Thursday, 22 March 2012

Getting Rich & Skinny off Migraine Medication: Topamax Part I.

If Winston Churchill had suffered from migraines he doubtless would have said “I’m terribly sorry this monologue is so long but I’ve had too many migraines recently to make it shorter”. He would have then gone on to give a rousing speech about fighting migraines on the beaches, on the streets, about never surrendering…

Actually, I think G.B Shaw originated the quote I’ve mis-quoted about not having time to write a shorter letter but anyway…

For various reasons my team of Doctors and I decided it was time to put me back on a daily migraine preventative. As you can see from my Tried & Tested page I have tried almost every preventative, without much success, but tomorrow I start a series of injections on my cervical spine (i.e. neck) that will, most likely, provoke yet more migraines. So back-up is needed. The top choice: Topamax (Topiramate), an anticonvulsant, epileptic medication used with relative success for some migraines.

One of the first things my Neurologist said to me about Topamax was:

“Now, Victoria, one of the most serious side effects of Topamax is weight loss.”

Weight loss? Weight loss! There is a drug that could make me skinny and possibly help with my migraines and my bastard Doctors have been keeping it from me for 13 years!!! It took every ounce of will power I possess not to reply:

“I’ll buy every bottle you have right now! Do you have some here, in your office? I want all of it!”

Instead, I took a deep breath, stroked my chin and said, “Interesting, interesting, do continue.” But I wasn’t listening, all I could think about was being skinny and migraine free (notice how it had now become a cure?) And then an evil genius plan began to hatch at the back of my mind. I could sell some of these miracle weight loss drugs on eBay! We all know what crazed Hollywood Actresses will do to get skinny. Imagine what they would pay for a drug that is known to cause weight loss in a quarter of its users!* Oh this was going to be amazing. I was going to be supermodel skinny, migraine free and rich! (In my defense, I had just come out of a 3 day mega migraine so was a little light headed.)

And then my Neurologist rather rudely interrupted my evil genius plotting by explaining the extent of weight loss in some migraine patients. One young lady he had on the drug lost more than five stone, which would be about half my body weight. A little excessive, even for me. But I was not to be deterred. He talked about severe pins and needles experienced by some patients, I waved this aside. My left arm and hand are numb most of the time due to radiculopathy (nerve damage) so I assured him, I could handle that. He went on to mention other possible scary side effects ranging from glaucoma, blurred vision to kidney stones, mood swings and memory loss but all I could think of was my ‘get skinny and rich plan’. How much should I charge on eBay? But he persisted in emphasizing all the side effects, especially the cognitive dysfunction and psychiatric ones. I really think he was being over dramatic. But then he told me how one patient rang him up to say she was having thoughts about killing her son. Ah.

But still I remained positive that I was only going to suffer supermodel anorexia and none of the other possible reactions. I think my Neurologist could see I was experiencing selective hearing so he said,

“And this drug can interfere with the contraceptive pill, so you don’t want to get pregnant!”

To which my ever-helpful Mother responded:

“She should be so lucky!”

That decided it. A prescription was written and off I went. I did, however, begin to grow a little apprehensive when I dropped off said prescription with my friendly Pharmacist and she said,  “Oh God, Victoria, whatever you do don’t read the list of side effects!”

She should not have said this. Obviously I then spent the whole night on the internet and found several actual ‘hate’ sites dedicated to Topamax. I know even Vitamin C has a long list of side effects, and I’ve been on nearly every other migraine preventative available, but Topamax has a list of side effects as long as a loo roll! I couldn’t sleep that night, convinced I would kill my parents in their sleep. If you’ve read previous posts you’ll know that murderous tendencies run in my family!

But, being a migraine pro I looked over my trusted reference books ("Conquering Headaches" and "Coping with Headaches and Migraines") and recommended sites (listed top right). For me, this did seem like a sensible option. And, let’s not forget, I would be skinny and rich.

Day 1. 
Now the advice with Topamax is “go slow”.  I was prescribed a pediatric 15mg ‘Sprinkle’ dose formulation. You can pull the capsule apart and ‘sprinkle’ as appropriate, thus regulating your own dose and increasing whenever you feel ready - depending on side effects (and obviously following your Doctor’s advice!). My Neurologist also assured me that most of the side effects would wear off and the scary ones, like going blind (I’m exaggerating for dramatic effect), would be apparent very quickly.  How scary could anything with ‘sprinkle’ in the title really be?

So, I took the pills and the first week went by without incident. I did not try, or have thoughts of, killing my parents. I experienced slight pins and needles, felt a bit spaced out and sleepy but nothing major. Nor, more importantly, did I lose any weight! Disappointing.

Day 14. 
On week two, the first bizarre side effect started to take effect. I have a sneaking suspicion it was karma paying me back for my evil genius get-rich-quick plan.

I am not going to get supermodel thin on Topamax. I am not going to turn in Heidi Klum. I am, in fact, swelling like Violet Beauregarde from Charlie And The Chocolate Factory! But not because I’m hungry, oh no, but because I can’t stop drinking!!! (Water, that is, not Gin.)

Oh god I've just realised we both have Copper Auburn hair and power bangs!

Yes my friends, thirst is going to kill me. I am drinking so much bloody water I will soon explode.

And I am not talking normal thirst. I am talking, Jesus of Nazareth in the desert for 40 days and nights with no water type thirst; dry raging throat, unquenchable thirst (it’s very handy that it’s Lent right now.)

When the raging thirst first hit, on a Sunday when these things always seem to happen to me, I obviously thought I was dying of Kidney stones (a listed Topamax side effect which I have subsequently learnt off by heart). I ran to Mum and, between lapping up water like a dog from the two jugs of water I was holding, said:

“You have to call a Ambulance right now I’m dying of Kidney stones!”

“Ok, Darling. What makes you think that?” Mum calmly replied.

“There’s no time to waste explaining but” {interlude to lap up more water} “I read about this girl on an internet hate site also on Topamax who was rushed to ER with Kidney stones so let’s save time and call the Ambulance now before my Kidneys kill me!”

Dad was called for a consultation. Obviously he’s had Kidney stones, having had every medical ailment known to man. He explained it actually takes some time for Kidney stones to develop, and as I’d only been on the drugs for 2 weeks it was unlikely.

“Oh god you don’t understand” I screamed “You don’t know about this drug and it’s power and do you have any idea how guilty you’re going to feel when I die and you just stood by and did nothing and do you know how irritating you are?!”

By now you might also have guessed the second bizarre side effect I was suffering. Mild Rage.

In the end it turned out Dad was right, I was not dying of Kidney stones. But the thirst was to such an extent that I could do nothing else all day but lie in bed and drink. I felt sick with thirst. It made me angry how thirsty I was. I tried sucking throat sweets, wet flannels, no matter how much water I drank nothing helped. Then finally, at about 8pm I realized that Ice Lollies, Calippos to be exact, were the only things on planet earth that would quench this unquenchable thirst. So out my devoted mother went into the cold night and came back… with soy fucking ice cream. As the thirst had augmented, so had the rage.

She entered my room coyly, tentatively holding out the soy ice cream in front of her, like a kind of shield. I might have growled. She eventually persuaded me to try some, to see if it would help. It tasted like cardboard, conversely making my mouth even drier! I wailed and moaned like a cow in labour. 

A cow in labour according to 'The Optimistic Rancher' Blog. 

Why did no one understand? Why was no one helping me? I threw the ice cream to the floor in disgust. Mum finally had enough. She had been tending to me all day.

“That soy ice cream cost seven pounds, it’s the most expensive ice cream in London. Tesco Express are not selling ice-lollies at the moment, they won’t stock Calippos until it’s spring so you’ll just have to make do.”

“WHAT! Well drive into Hammersmith and get some! And call the Chairman of Tesco and complain!”

Obviously, this didn’t happen.  But I did burst into tears. How was I ever going to be able to leave the house again? Mum suggested I could get one of those backpacks marathon runners wear, with water packs and straws you can have in your mouth at all times. That made me cry even more “That wont make me look weird at a dinner party will it?!” I wailed.

But then thank god my creative genius kicked in, I ran (or rather rolled like Violet Beauregarde) into the kitchen. I swear I could hear the lake of water sloshing around inside me. Was I really going to be the first person to die from water explosion? Anyway, once in the kitchen I frantically poured orange juice into ice cube trays and sat on the kitchen floor till they froze. This is how thirsty I was. Incidentally, I looked again at the side effects of Topamax and sure enough “Increased thirst and drinking abnormally large amounts of fluid” was listed. But I actually think any possible symptom, such a 3rd toenail from the left turning pink, would be on that loo roll of side effects. Anyway, when my mini cube lollies were ready I sucked on them, incredibly pleased with myself, somehow they seemed to help. Thirst finally abated, I proudly showed them to Dad.

“Look, look what I made Daddy! I should sell these!”

“You’ve just frozen orange juice.”

“You never loved me why don’t you love me!” Rage not quite abated.

So welcome to the world of trying out preventative medications. Is it worth it? I do realize that of all the listed side effects, I was pretty lucky. I also realize that selling drugs on eBay is highly illegal and dangerous. I wasn’t really going to do it!

As a family we decided it would be best for everyone’s personal safety not to up my dose until the rage and thirst had calmed down, which they did. During this time I wasn’t even on a dose that should have affected my migraines but I did notice they were slightly less frequent. In the coming weeks I’ll let you know what happened when I gradually increased the dose.

I’ll just tell you that my local Tesco Express now stock Calippos! This has nothing, whatsoever, to do with my stalking to the local manager.

 *Refer to Page 33 of the BASH guidelines.

Next: Topamax Part II: Bizarre side effects continue as I up the dosage but is it working?

Also coming up:
Top Tips and Migraine Rituals.

Possible links between Epilepsy and Migraine?

The National Migraine Centre: Migraine Mecca!

Have you tried…? Unhelpful helpfulness.
Legal Disclaimer
Topiramate is a really serious drug. I only decided to take it after careful consideration and consultation with my Doctors. The side effects I experienced are relatively rare but there are other side effects, some of which are much more serious. Everyone reacts differently to drugs. This article is not intended to be and should not be construed as being medical advice or a recommendation to take Topiramate or any other medicinal drug. Readers should always seek a professional medical opinion in light of their own symptoms and circumstances. For more information, book an appointment at The National Migraine Centre and talk to one of their specialist Doctors or refer to The Migraine Trust which has fact sheets online, and an information helpline.


  1. Hey Victoria
    It is funny cos I didn't attribute my increased thirst to Topamax until I read your blog! It obviously isn't quite as bad as yours but I do weird things like buy a bottle of water at a train station for a half hour train journey despite having a full water bottle in my hand because I panic that I won't have enough water to last me 30 minutes!
    I've been it on now since January and am now in Canada on a visit to see boyfriend and friends. I haven't been back since December and everyone is like 'wow you look amazing, have you been working out?' I'm like 'umm no I'm on this hardcore drug that makes you lose weight'! It is a pleasant side effect for once specially as all the other preventatives seem to make you put on weight but I do feel like I'm cheating somehow!
    But it does seem to be slowly having an effect which is awesome. Hope it works for you too. I look forward to hearing more about your side effects and maybe you'll point out more that I haven't even noticed!

  2. Hi Fi,
    Well maybe we should do some selling up in Canada...kidding!! Remind me what dose you're on again? I'm still only on 45mg! I accidentally took double yesterday and had massive vertigo spell - and my tinnitus has come back too. But that has always been a problem for me. I've also noticed sore throat - which I thought was being run down after lots of migraines but have just realised started with the mega thirst and is a listed side effect .... But as I said in the post I'm pretty sure any ailment could be put down to Topamax, I guess the trick is working out which ones are new! Really glad to hear it's helping with your migraines, wonderful news. How's the sleep going?
    Victoria x

  3. Hey V,

    I was asked to start Topamax but was too freaked out by the mind-altering aspects since I've had bad bouts with anti-depressants years back. Luckily for me, I went from migraines three times a week to (knock on wood) only two in the past six months. My "cocktail" is one Naproxen and two Tylenol but I always throw up either way. I can't tell if it's hormonal or situational or stress or food related. I kept a diary of them last year but found almost zero likenesses (is that a word?) Hearing your experience with it is slightly daunting and also all those commercials for cleft palate babies (do you have those in the UK??) associated with taking Topamax...

  4. Hey Lady, in England, where the Queen is from we have to be nice about people in our TV Ads. If you 'go slow' on Topamax, like I have been, it really isn't that bad...? Um. But sounds like you're getting your migraines under control, though I"m guessing it would better if you could more clearly work out your triggers and what was lowering your migraine threshold?? . Do Naproxen really work for you? You don't need Triptans? You do know there are some anti-emitics that you can take that might help with the vomiting, plus soluble and other, um, formulations of NSAIDs that are useful if one is throwing up? You prob know all this already! Sorry. My favorite (spelt American for you) book on Migraines is American 'Conquering Headaches', link in post above, you must buy it! Got some really great advice/tips - and the authors run a great migraine clinic in Stamford I

  5. Hey Victoria
    I'm on 50mg twice a day but I think I may have taken double this morning. You'd think it would be easy to remember if you've taken a pill or not but I find it really hard. I should really make a note or something. Of course I blame these memory lapses on Topamax! As for the rage, well I guess I must have always been a pretty moody person because I haven't noticed any difference and noone has mentioned anything (or they have been too scared to say!).
    But now you mention tinnitus, I have started getting ringing in my ears occasionally and my ears seem to hurt more during a migraine than they used to. hmmmmm.
    With the sleep, it is hard to say at the moment as I have jet lag to contend with which has messed up everything but I do seem to need 9 hours which is a little over the top!
    btw I was just rereading the Topamax site and it said that you should have a blood test to test the level of acid in your blood before and during taking Topamax. Have you had this? I haven't. Better just pray I don't develop kidney stones whilst I'm here in Canada!
    fi x

    1. Hey
      Didn't have blood test, my Neurologist just told me to stay hydrated (wondering if he had premonition!) as the chances of Kidney stones are pretty slim! Re taking dosage - I have found the solution - I tried to attach a picture but it didn't work. My Dad gave me one of his weekly pill box organisers! You know the ones you can buy in CVS, BOOTS....I know, I'm a complete Granny - but it really works! Enjoy Canada! xv

    2. Topomax can also cause irreversible hearing loss which may be why you are having the ringing in the ears. I now need hearing aids in both ears because of topomax and I am only 49. It also cause hair loss, and the chances of kidney stones are not slim they are fairly good if you take if for long or in high doses which I had to increase the dose enough over the course of 2 years to keep it working (400 mg a day). The side effects became so serious for me that it was destroying my health and I had to go off but it took several months to get off of them and in fact I am not off of them yet.

    3. After reading all these side effects, I don't know that I want to start this regimen of med. I was on Lyrica and lost hair, plus my energy level felt as tho I could leap tall buildings. And that was on the lowest dose. Took me two years to go off of it. My doc never indicated I needed a blood test. I already have a slew of meds that I am highly allergic too. Starting a new one scares me. And am i just covering up pain where there may be a real problem? I'm a nurse for 30 years, retired or on disability rather. I have fibromyalgia along with the migraines, which may be related to fibro. Panic attacks for no apparent reason. Chronic sinusitis, depression, but more like anxiety. Muscle craming, irritable bowel with severe constipation. Fiber makes it worse. Insomnia except now I'm on Klonopin and that is long-acting so it keeps me calm during the day and sleep at night. Had whiplash in 1980 so whiplash and discs may be the problem. Have cervical spinal stenosis. Just had gall bladder removed 3 weeks ago after being sick for 5 years, and tests showed nothing until my gall bladder died. Do much better now. Am very fatigued most of the time, don't even want to leave the house. I've taken care of so many people in my lifetime that I love being a hermit. Loud noises really put me on edge, or people that talk too much. I smile, but I want to slap them. Passive/aggressive. I'm such a fun date. Been there, no thanks. Getting back to med, I think I will pass on the Topamax.

  6. Hi Victoria, Im really enjoying your blog. My migraines also began at age 18, and are still going strong as I approach my 50th birthday! I just wondered are you based in UK or USA. Its hard to tell from the language of the blog.

  7. Hello Gill,
    Oh this is a comment I get all the time, especially with my creative writing. I am British and live in London at the moment but have spent a lot of my life in America. I'm an Americanophile. I've done a Master's degree in Creative Writing at Dartmouth College, USA and an MFA in Musical Theatre Writing at Tisch, NYU...also lived in San Francisco and most of my writing collaborators are American so you'll see why my vocabulary is a little mixed! I honestly can't remember how you spell most words any more. A British friend of mine very kindly did a spell check of this post for me and wrote "Literarily speaking you are moving away from your British routes towards our colony on the other side of the Atlantic…" But I speak the Queen's English.
    Hope you are having a good, migraine free, weekend. Victoria x

  8. You are very brave! I'm always so scared of taking new drugs, but it's for the better of two evils in the end :) I hope you get something positive out of it.

  9. Hah...I didn't even know rabies was a side effect of Topamax. I was pulled in by the skinny fantasy a few times,despite locust tinnitis and...I forget,um...oh,memory loss. Darn doc tried again to get me on it...said "want to try Topamax?" I replied "dopamax?" He said, "no...Topamax". I repeated "Dopamax?" He said..."no....with a T"!! Then,he got it the third go 'round. NO NEVER AGAIN. I stayed on up to 3 months with no benefit and no lessening of side effects. Glad some get helped,though.

  10. Lynelee, some Doctors just have no sense of humour do they! My Tinnitus is going crazy again, thought it could be my neck and other issues but it's probably this...but I'm going to preserver till I get on the dose my Doc thinks will be helpful! Do you take anything for your migraines now? Or was this for Epilepsy?

  11. Hi Victoria, I meant to mention to you at the User Group that I had experienced hideous side effects with Topamax. The effects on my speech and memory were terrifying, particularly since I rely on them for my career. The worst of which was trying to order some Mediterranean quiche which came out as 'flobalobalalobagan'. Amusing on reflection but frightening at the time. I would lose my train of thought in meetings and drop things on the floor and burst into tears. It also triggered an almighty migraine that lasted fifteen days. Not one of my better experiences! I have been trying electro acupuncture and a sugar free diet but it's not really making a huge difference (although I have lost half a stone!). Does anyone have the same lack of objectivity as me? If I am on a migraine free day I am optimistic and euphoric when during a migraine I can be almost despondent. My diary is the only place that really reveals that no matter what I try I still have between 12 and 14 a month. I feel particularly low today as I spent five days on holiday and had a migraine every day. Like an idiot I forgot my triptans so my husband had to trek across Spain to buy some over the counter! Feel better for sharing though! Best wishes to all fellow migraineurs and let's not give up hope just yet...Amanda

    1. I started taking topamax 6 weeks ago and startd at25mg the first week then 50mg the seacond week now stopped at 75mg. My doctor wanted me to go up to100mg. WTF I am losing weigh and my mind. What is wrong I can't go a day without a panic attack and two klodpin doesn't calm me down so now I'm on an Abilify???? Starting to thing migrains aren't so bad...

    2. Hi Anonymous. I started out on 25 mg then to 50mg. 1 in the am and 1 in the pm. Been on this dose for 10 months. No psych affects at all. No abnormal thirst. No rage. No panic attacks. Just a slow weight loss. Have lost 30 lbs. It is the reason I started taking it. I was getting so depressed due to chronic weight gain even though I was active. Was not a pig eater either. Topamax has been a life saver. I was 50 lbs overweight, Borderline diabetic, knees painful, and increasingly depressed. I feel great. I think you got upped way too fast. I didn't start on 50 mg until after two months and have stayed there. But again, I don't have Migraines. Maybe the higher doses needed for that are not so good. But lower doses for depression and weight loss for me have been awesome. The FDA has also approved a combination of a weight loss drug and Topamax.

  12. Hello Amanda, lovely to hear from you but oh I'm so sorry you're feeling down. Big hugs being sent your way, I so understand how you feel. Between migraines I'm the life and soul of the party but during one...actually I often like to burst into tears when one is just starting if that makes sense, then I can get on with the migraine, then maybe cry a bit after. Then return to my bubbly self! I can't believe you forgot your Triptans!! I put them in my hand luggage, handbag, suitcase, maybe even give one to whoever I'm travelling with. But I ran out of them during a trip to France and my Dad had to do what your husband did...but it took three days by which time the migraine had gone. He was so annoyed with me for not needing it anymore having spent three whole days persuading Docs to give them to him he said "just inject yourself anyway!" So sorry your holiday was ruined. Sadly this is all too common for migraineurs isn't it!

    Your Topamax experience sounds awful! How scary. People really don't like it do they! I'm still on a relatively small dose as my theory is if I go very slowly I might not lose the power of speech but I did have trouble signing my name the other day...? I think electro acupuncture sounds like some kind of medieval torture, is it any good? Also, I seem to remember you'd never been to the National Migraine Centre???? I know you're a pro and have tried everything but they're just so friendly there and it might just be nice to brainstorm and get a fresh pair of eyes looking over everything again? Ok I'll leave you in peace. For now. But I've just put up a new post that I hope will make you smile!

    p.s In case anyone else reads this Amanda and I are not in some drug addicts 'User Group' we're part of the newly re-formed Migraine Trust User Group!

  13. So lovely to have fellow migraineurs to share experiences with. Your blog is wonderful by the way! Feeling much better today. In fact - I have post-migraine euphoria! 'Tis a very contrary condition to live with. I hope you have a better experience on Topamax than me. I appointed some guardians at work and personally to observe any behaviour changes after I too read the scary side effects (did you notice 'suicide' is one of the side effects?????) and they urged me to stop taking them. It might help to retain objectivity. I have to say, I suspect from your eloquence at the meeting that you haven't been affected by the brain dysfunction. I remember too that all drinks tasted flat which was annoying if not as challenging as the insatiable thirst. The electro-acupuncture so far has delivered a reduction of 2 migraines a month (from 14 to 12), so it's not all that (and a costly exercise at £500 per month or disappointingly £250 per migraine averted). However, the practitioner maintains that he has never had a failure and is convinced he can cure me. Either that or he will bankrupt me. Well, we do have to give everything a try I guess...I will definitely be visiting the National Migraine Centre - amazed I haven't heard of it before. Thanks for the tip. And I will NEVER be so idiotic as to forget my Triptans again. EVER! Amanda

  14. Morning, it is indeed very contrary! Very good idea to appoint guardians, I have my parents who are more like my victims. May have banned my mother from singing in her own home in a Topamax rage! I really hope the electro-acupuncture helps you, it never did much for me (normal that is) but it does wonders for some and I know the NHS recommend it and as you say it really is about finding out what works best for you and just trying everything! Randomly, just found this rather funky online high tech migraine daily diary that I thought you might find interesting. You can do it via an iphone/ipad/blackberry etc, and it looks really good for noticing patters/triggers etc and keeping track of how many triptans and other medications you've been taking and you can email it to Doctors etc and looks quite easy to use.... The Nat Migraine Centre have a more simple paper one that they'll want you to have filled in before your appointment. Do let me know how you get on! xx

  15. I love this post! I'm so thankful to be off Topamax, but it sucks that the weight is coming back on for me. Hope you are doing well!

  16. This made me laugh. So true I don't think people realise how difficult it is. I take 200mg topamax but I take it at night only and have been doing for a couple of years its the only way i could cope with the side affects. I worked out the half life of the drug and talked it over with the Dr. i found that taking the morning tablet made me nuts i couldn't speak properly and i would forget were i was, if i take it when i go to bed it doesn't matter. I wouldn't do this if i was taking it to control fits, but as I am taking it as pain control it doesn't matter. I don't like the side affects but I am in less pain. Difficult choice.

  17. That is very cunning indeed! Sounds like it's now working for you taking it in this fashion? I'm just about to up my dose again so a blog update it probably due! But I actually appear to be putting on weight...damnit!!! (Obviously that's not why I'm taking the drug at all...)
    Hope you're pain isn't too bad today x

  18. Hi Victoria,
    I've been reading your blog but never commented but decided its way past time. I've been on topiramate for 6 weeks and uped my dose to 100mg today. Bad news - no weight loss grrrr!! However I seem to be having every side effect going. I was pushing my little boy on the swings in the park and the world just left me, twice! I felt terrible and sick. I've never felt this bad. I've had the tingles and dizzieness and the mind tricks and words (which is terrible because I've just got a job demonstrating on live tv do watch me screw up in front of millions of people)
    I've started to notice my hair getting thinner. What trolling the web looking up the side effects of topiramate I read that some one was taking pregnancy vitamins to counteract this. Have you heard of this? Talking to my dr is terrible it takes weeks to get an appointment.
    I'm the one meant to get thinner not my hair!!!!!
    On the up side my migraines have gotten a little better though, hopin the uped does will settle them right down seeing the neurologist on the 2nd

  19. Hello Katherine, Sorry its taken me so long to get back to you!! How are the side effects going? I've found mine have begun to ease but re-appear when I up the dose. Very glad I don't have to do your job as speaking on TV would def not be ideal at all! I forgot how to sign my name for a prescription the other month so that would be most embarrassing if on live TV! I've never heard the thing about preg vitamins...maybe they mean just the usual vitamins they sometimes recc for migraineurs? Hope you're doing well today though and that the appointment with your neurologists goes well - do let me know how it goes! x

  20. So glad I've come across your blog. Please excuse my spelling and grammar as I'm still detoxing from Topamax - I came off them 1 week ago cold turkey style, I'm also dyslexic and totally scatty.
    I popped my 1st topamax on April 17th (my 49th birthday). By week 3 my memory, speech, organization went haywire(and still is) and was sent home from work and have been off sick for 4 weeks...all because of Topamax side effects. I'm a Community Nurse in the NHS and need my brain to be working to full capacity.
    On June 11th I had an episode of SVT (supra ventricular tacchycardia) which required me dialling 999 and taken to A&E. My colleagues and I think the Topamax triggered the SVT.

    2 days before that episode I started to experience really weird “nerve sort of electric shock feelings – (not pins and needles) that come from my chest area (not cardiac) and shoots out to my arms, hands, legs, jaw, face and head. It’s like it enters my chest area and leaves my head area. This happens every 40 seconds and scaring the s**t out of me and still is. I stopped taking Topamax 1 week ago and still I'm getting these weird sensations. It feels like abnormal activity going on in the brain and it won't go away. It feels more scary than dialling 999 and being rushed into the Rescus room and having this drug that could stop the heart beating altogether!
    Have you heard or experienced anything similar?

    1. Hello Preep I'm so sorry you've had such an awful time and I've haven't got back to you sooner. I can't believe the time you've had! Topamax is a very strong drug and I have heard of people having incredibly strong reactions to it, completely forgetting names/speech etc and my Neuro did warn me that if anything strange did happen to get help immediately. I'm also not sure I could have handled a full time job while I was starting Topamax so I can't imagine what you've been through, must have been so scary, especially as Katherine says given your job! I also think a lot of people start off on a very high dose?

      I have heard of people still experiencing side effects once they've stopped the drug, as I think, though I'm not totally sure, it can build up in your system? So it may take a while to ware off? I do hope, by the way, that you're seeing a headache specialists?

      Why don't you leave a comment on the National Migraine Centre's community forum as someone there might have experienced something similar? Also, if you could possibly get to London, the Doctors there are really lovely, you don't need a GP referral and might be great to have another opinion if you wanted? It's not a private clinic, a charity.

      Might also be an idea to call the information line at the Migraine Trust? Again its a free service

      Do let me know how you get on and I hope these symptoms ware off soon. Usually people are able to wean off Topamax slowly unless there is an event, like yours! Fingers crossed x

    2. Hi Preep, your other comment doesn't seem to be showing up here but it came to my inbox. Please do think about visiting the National Migraine Centre. I'm going to write about it in more detail soon - but if you can't make the minimum donation don't worry about it, your health must come first, and all they ask is that you help spread the word, maybe mention on Facebook, twitter etc and you can donate when you can! Why don't you just give them a ring and talk to them to find out? It's a very unscary, un pretencious place and really sounds like you need more than 8 mins with a headache specialists. The initial appointment at the Migraine Centre is about 40 minutes!! Here is the link to the Health Unlocked forum for the Centre - its via the links section of their main website. Hope this all helps. Do also think about calling the information line for the Migraine Trust too x

  21. Hi preep, I have mild svt anyway do when I read that this tablet could affects heart I was like - should I really be taking this?!? Thankfully it has only given me a few more minor episodes and nothing major because the hospital trips scare the heck out of me.
    My side defects are starting to settle down but I'm still not convinced they are working to they best of their ability. So words will be had with my neurologist.
    I don't blame you for going on the sick though! That nuts have been very scary having the side affects so bad especially in you line of work, my would just be embarrassing but yours is serious! How you coping now your off them? I'm having a bad few days so I do hope your doing well off them!

    1. Hi Katherine, sorry to hear you're having a bad few days too! My side effects have finally, after 5 months begun to settle down too, going to write up a full blog about it soon, but I think its also the combination of the other things I'm doing too that's also helping. Hope you're doing well today!!

    2. Hey From Canada, ( yes, we really do say hey an awful lol,). I too have started on the road to topamax, so far just a lot of numbness in my toes and possibly more sick to my stomach then usual. I crinch to say it, but I know I've hit the MOU wall. It makes me cry just thinking about it. I can't remember the last day I didn't have a migraine, so everyday I take between 2-3 imatrix and up to 6 mersyndol (codeine and a
      Caffeine ) I know, seriously bad! Well, reading your blog has given me enough courage to start with a baby step, so for the last 5 days I've cut out the mersyndol , of course for now my head is worse and I can't sleep (lots of panic attacks ) but I will try to soldier on (: I have no idea if these preventive meds can help if you're dealing with all this othe crap? Any how, sorry to ramble on so, please let me know if you are seeing any improvement and what dosage you are up to. Also what a relief to come across really funny articles after years of researching stuff that can be so dry. BTW......I'm 56 and have had migraines for 30 years, YIKES

    3. Hey, hey, hey!!! So glad you found this blog and thank you for your kind words. Sorry it's taken me a while to get back to you. Obviously I'm not a Dr but it does sound very much like you are indeed in MOU/Rebound headache land - and while you're there the Topamax won't have a chance of working at all! Mixed pained meds - one with codeine/caffeine are also particularly noted for their ability to give you MOU very quickly I believe!

      I'm going to write a blog update re the Topamax soon but I think it is gradually, slowly, starting to help but in conduction with nerve blocks, physio and other measures too. I'm nearly up to 100mg but taking less during the day and more at night to avoid being dopey!

      Susan, do you have a great headache specialist helping you at the moment? I know you've been dealing with this way longer than I have but sometimes a fresh pair of eyes, i.e a nice new headache specialist (not all neurologists are headache specialists as I'm sure you know) could be just what you need to help you through this really rough patch. Geography is not my strong suit at all - but are you any where near this place, in Toronto?
      Dr Zitney sometimes leaves comments on this blog and seems to understand what we migraineurs face.

      p.s Have you seen my MOU post? Remember you're not alone! Looking forward to hearing how you get along xx

  22. Hi - thanks for your reply and reassuring comments - the links are useful to. I'm interested in the Migraine Clinic but not sure how much of a donation they would expect. My life style is very basic as work part-time, single parent, I support a 21yr old son who is till in full time education and a son whose been unemployed since he left school 4yrs ago. I wouldn't want to embarrass myself with an offer of a small donation - it would be nice to know what others donate.

    I'm still off sick and still feel drugged up. The weird shock feelings are still there but fainter and less frequent - say about every 4 or 5 mins apart.

    I thought I was seeing a headache specialist when I was referred to see a neurologist at Ipswich Hospital. My 1st appointment lasted 8 minutes, given Topamax (note first thing he said ("side effect maybe weight loss" - this makes me wonder if there some sort of financial gain between consultant and drug company), then he said NO NEED FOR FURTHER APPOINTMENT AND DISCHARGED ME, any problems see your GP.
    Now, I tried to get help when the "weird scaring the s**t out of me sensations" started, saw GP - he had look up the drug and side effects, I told him what I'm experiencing is not listed so he put it down to stress and anxiety, (which at that point I was getting stressed. 2 days later I'm feeling worse so I rang PALS,not to complain but for help, who put me in touch with "my" consultants medical secretary. She said my consultant is based at Addenbrookes (80miles away) and that she would email him and he may get back to me. I then asked to speak to any neurologist in the hospital and she said there was NONE!
    And to this day I've heard nothing.
    This drug has definitely had an affect on my brain but I don't know what and still need to find out.
    The only good thing about Topamax is I did lose 2 stone in 2 months:)
    So I will now leave a message as you suggested on the forum and let you know how I get on.
    I did manage to arrange some blood tests for myself - got a colleague to take them. Surgery rang next day to say I need to discuss the results with GP - appointment tomorrow.

    I can't find a link to click on migraine clinic forum page....any ideas?

    1. Try an over the counter Potassium supplement for the stinging sensations. My GP told me about this and it really did help. If you don't want to take another pill try eating more green leafy vegetables, mustard, bananas, strawberries. All of these foods are very rich in Potassium.

  23. Dearest Victoria and all of us migraine victims:
    I've suffered from migraines since I was 11 years old and started Topamax when I was 25 and was on it for 5 years and have been off it for almost 3 years and I'm still battling the side effects!
    I LOST HALF OF MY HAIR! HALF! I had the most beautiful hair and now it is limp, thin and almost non-existent. I continue to struggle with this daily and have spent so much money, time and tears trying to get it back to the way it was and have to sadly say I don't think it will ever be the same again :(
    And I won't go on about the memory loss, skin conditions, triple weight gain, etc. because the EXTREME HAIR LOSS should be enough!
    Do some research. Go online. There are thousands of sites where millions of women are miserable after losing their hair on Topamax!
    The weight loss is great at the beginning but it screws up your metabolism for life!! You will gain it all back after a while even if you stay on it!
    All of you: Research this terrible drug that ruined my hair and my life!
    I'd rather have migraines than be bald and miserable.
    Google "Topamax hair loss", and you will all be convinced. Just trying to prevent this happening to any of you.
    I wish someone would have warned me...
    Hope this helps. Good Luck!

  24. Hello Kika, I'm so sorry you've had such an awful and horrible time with Topamax. It really is a very strong drug and as with all preventatives there are very serious potential side effects. I really did do my research, I promise you, and my neurologists did very carefully take me through all the possible dangers/risks etc and I don't plan to be on Topamax for a long time at all. I'm only hoping to stay on it for a while to get me through this 'migraine slump'. We all react differently to different medications and I'm so sorry that you had this appalling reaction. I guess I'm lucky that at the moment I'm doing ok with minimal side effects. Will post an update soon. x

  25. I will never forget the great work of Dr. OMO in my life. I was terribly ill and the doctors confirm that I can’t be healed completely for this I was frustrated and my increases as time pass on. When I meant Dr. OMO online I discuss my situation with him, and he said nothing is impossible. He ask me to send my photograph which I did and he bought some materials which he used for me and I was able to regain my normal health after a week. When I went to my doctor for check up he was surprise and said unbelievable that my health is normal and my body weight equally normal. My greatest thanks to Dr. OMO if you which to contact him, his Email

  26. I began taking Topamax when I was 18. My Dr. started me on a 20mg dosage and slowly increased over the course of about 1 month to 200mg. This still did not prevent every migraine. I refused to increase dosage anymore as I was taking up to 4 pills of this daily. I was also on a rescue medication called Maxalt MLT. The rescue medication did work quickly but I was sick and tired of medication. I never really experienced any side effects other than the tingling sensation, which was cured by a daily dose of Potassium, and some general moodiness at first, I attribute that to my Generalized Anxiety Disorder. I have since weaned off all medications. I have daily recurrent migraines but other than an over the counter analgesic I REFUSE to take medication daily. I try not to take that. I have recently begun working night shift again and my migraines are worse due to adjusting to my sleep schedule. I have about determined that changes in barometric pressure has a large effect on my migraines and that is unavoidable. Chiropractic services helped more than anything with my migraines but I am no longer able to go to a chiropractor daily. I just wanted to share my experiences. Good luck to you.

    1. Hi Kaitlin, thanks for sharing and so sorry you're having so much trouble with your migraines. I've found physio and treating my neck to be the best solution too - along with topamax as well. I was off all preventatives for many years as didn't see the point for a while but have been pleasantly surprised this time around. I'm also having nerve blocks - have you ever had those? No nasty side effects compared to daily meds! Such a shame you can't keep up with the chiro. I bet doing night shifts must really, really mess with your sleep cycle which is a huge problem for us migraineurs. I'm guessing there is no way to get round that? Good luck to you x

  27. Just read this with a half smile on my face. I've just spoken to my doctor and been told to stop the Topiramate because I'm getting eye pain and blurry vision, I decided that simply because of the eye pain I didn't fancy it getting any worse and putting my eyesight at risk as I already have seen a change in my eyesight. I have to wear reading glasses anyway, which drive me mental. I hate having to clean them and polish them every 5 seconds so I don't fancy having to wear them all the time! I am also on Amitriptyline for my migraines so I don't know if the thirst and dry mouth thing is due to that or to the Topiramate but it is awful and I hate it, I have to have at least 2 pints of water next to my bed during the night and that usually isn't enough! I'm a bit concerned about the whole kidney stones thing as I've been having some pretty horrendous back and abdomen pain which I'm really hoping is just random and isn't a kidney stone... I don't know what the odds are of me having one... I've been on 100mg a day for the last week... and I've been on Topiramate for 3 months now. I'm going to have to try and wean myself off it now I guess, I hope I don't get any awful withdrawal symptoms, I don't want my migraines to get even worse again :( I have to get back to work!

  28. Jill Seattle-ish, WA USA11 October 2012 at 00:53

    Oh goodness everyone. I've had migraines for years and just dealt with them as best I could. It wasn't until I first went to the Dr for an unrelated visit, and he ssked if I had any other concerns. I told him I seemed to be getting headaches more frequently...and the cycle of meds, side effects, 'try this and see if it helps and come back in a month' omg craziness began. I could nod or empathize with SO many comments, medications, 'treatments' and complaints in the posts above. I'm sorry for all of your suffering. Today a substitute Dr perscribed Topirmate because the Amitriptyline (sp?) .... (blurred vision/migraine right now, God bless it) has quit working and the breakthrough migraines are Hell on earth. She mentioned weight loss as a side effect, and being years now as a medicine test rat (how I am beginning to feel), that made me super alert to google side effects on my own.

    Victoria, your initial post made me laugh because my exhausted and pain controlled mind GRABBED 'skinny' like grabbing a sword end to save oneself from drowning. But my realistic mind spoke up in it's quiet, tired voice and asked 'if that is a 'side effect' why is it not perscribed for obesity aid, etc. I smelled something rotten in the garbage heap, eventhough I wanted to blindly believe the 'weight loss' side effect.

    What I've received here is far more than I dreamed. I did indeed get pulled out of the clouds for this drug and am back on planet Earth and alert. But far more, the community of sufferers, the shared experiences, feeling very less alone than I ever have. If your family and co-workers have not experienced migraines, it sometimes can feel like they don't believe you or that you conveniently have an illness. Mine are the type that occur in my sleep. I can go to bed completely healthy and feeling great, only to be awakened with a full raging, bone piercing, eye-bleeding (a bit exaggeration there...but many of you will comprehend), nausea, loose bowel, noise and light sentsative, dibikitating migraine.

    And Victoria, you made me laugh. Your story of water thirst, the mental visual, the over-the-top descriptive Lord, could I relate.

    And I've had kidney stones once before. Hospitalized for 5 days. Morphene push button IV along with additional shots to accompany the drip. Tapping on the trigger button just in case it might release on accident before the light turned green again. Had I been told that the pain would never go away (the pain still present under that much morphene), I would have killed myself. No bones about it. Then getting home after finally passing them, exhausted, sore, tired...only to experience morphene withdrawls for a few days. Crazy phsychotic dreams that were vividly real.

    Medications have their place, but it is surely good to research on your own, and get second opinions and alternate options...or at the very least, a good understanding of potential side effects, so you can recognize them.

    My prayers are with you all, and myself. Thank you for sharing your suffering and humor. xo Jill

    1. Hello Jill, thank you so much for you wonderful comment and I'm so sorry it's taken me a while to get back to you. You really have been through the wars! Obviously I completely understand where you're coming from! It can be so disheartening when it feels like our migraine specialists are just going down the list of drugs one after another can't it - which is why I like to find one who treats me like a human, gives me hope and looks at the whole picture - they're an effort to find but they're out there! If you're seriously worried about the side effects of Topamax (which by the way for me are easing a lot, I think for some people they're horrific and for others - like me they ease with time) there are other anti-convulsants/neuromodulators in the same type of family, if you will, that your Doctor might suggest for you. But it's so individual isn't it - we all seem to react so differently! Obviously I'm not a Dr but there are lots of options still....sigh! But as you say we have to be our own health advocates and medication is just one portion of the battle against migraine and learning how to live with them. I look forward to hearing how you get on. Victoria xx

  29. HA!

    I got very thin and angry on Topiramate, and my outburst weren't nearly as funny as yours.

    Didn't make a blind bit of difference to the migraines, either.

    Great post, made me laugh.

    1. Hey Lady, thanks! Ironically I now appear to be getting fatter but thankfully does appear to be helping a bit with the ole migraines....x

  30. I loved reading this. I laughed so much because I thought the exact same thing when my neurologist prescribed this drug for my intracranial hypertension. I thought I could sell this drug and make millions as the new diet wonder drug lol. Of course it's illegal and I'd never do it... I'm lucky in that for me the drug is working and bringing the pressure in my brain down and most importantly (although the neurologist and hubby don't agree that it's most important lol) but I've lost so far 10kg in a month just by popping a tablet morning and night. Won't say there are no side effects. I do have shocking pins and needles in my hands and feet and my kids now eat more then me. I also now visit the loo more then my 5 year old, but it's worth it. I've struggled with weight my whole life and always had to work my butt off so the idea of now being able to pop a pill that is curing my brain pressure and my waste line is a miracle

    1. Hi Anonymous, glad I'm not the only one who had this evil thought! So glad to hear that it's helping with your IH though - and with the added bonus of the weight loss. I appear to be putting on the pounds - but I'm on quite a small dose so think that's probably more because I'm not as active as I used to be. I do hear from others on Topamax that side effects tend to decrease as time goes by so hopefully yours will too - I know mine have been :)

    2. Anonymous (Nov 23) What dose are you on? I too have IH and am currently on 50 mg and am scared to work up to the 100mg. Heather

  31. I just came across your blog and I love it! I've had migraines since I was a wee child and they've worsened now that I'm a wee adult :( I'm on propranolol which has made me extremely tired and kind of zombie like so I was thinking of changing it up with topamax (weight loss HELLO) but maybe I'll hold off :O thanks for this informative and hilarious post :D (hey if it can make a propranolol zombie laugh ..)

    1. Hey lil-bee oh I hated propranolol...saw snakes crawling on my bed, was a zombie too...much prefer Topamax actually but we're all so different and hey, I'm not a Doctor however much I secretly wish I was House..... hope you're doing well today!

    2. Hey Victoria, thank you for the reply :) I wasn't on a very high dosage of propranolol (20 mg only) so didn't have the hallucinations a lot of people complain about thankfully but wanted to get off propranolol since it was making me really tired, unable to sleep and a bit depressed.

      I had an appointment with my GP this week Tuesday and thought about it a lot and decided to ask her to put me on different beta-blockers instead of going down the topiramate road. Spoke to her about my worries about the side effects, etc but she assured me that I would be on a low dose, every medicine has side effects but its not necessary that I will get them and then she went on to prescribe 25 mg of topiramate for me.

      I've been ill these past few weeks (flu, tonsil infection, etc) and was quite frustrated with propranolol so decided to slowly decrease to one a night / missed taking them for a week while I was on naproxen and paracetamol for my flu / fever. Anyway so after Tuesday, my dad picked up my prescription from Boots on Wednesday and I realised they mistakenly gave me 200mg instead of the 25mg prescribed to me :O I was so in shock, went to see them today and complain and they were understanding / said they would file an official complaint but I'm just so shocked and angry that they made a mistake like that .. really, how one goes from 25 mg to 200 mg .. 10 times the dosage :O thankfully I hadn't taken any, having researched about the side effects but c'mon now :/

      Just came back on here to share and ask how its going for you but decided to read through the comments here before reading the safety leaflet (Boots gave me a loose dispensed bottle of topiramate and didn't include any safety instructions!) and now I feel really hesitant to take topiramate. I mean sure its a low dose I suppose, but I seem to digest and get affected by medicine at low doses and I really don't want to be all over the place for 2 or more months while my body adjusts to topiramate :/

      I was finally put on medication for migraines because it had gotten really bad around Christmas time, 2011 & I started feeling really spacy and weird (depersonalisation maybe) as well as dizziness, etc (I also suffer from anxiety) and my GP referred me to a hospital and I got an MRI scan and EEG done, etc as they suspected front / partial lobe epilepsy (I was diagnosed with a form of epilepsy when I was around 6 / 7?). Anyway by the end of those few months, the neurologist said I was feeling like this due to migraines (I was getting headaches lasting a few days during this time) and so was put on propranolol.

      Man, this comment is HUGE and maybe probably all over the place. I wanted to come on and share my shocking experience with Boots and also ask you a bit more about how topiramate has worked for you recently but now, after reading all the comments (and probably overthinking and analysing as I do from being anxious), I feel like not taking the risk of starting topiramate, at least till I finish this year of university. I suspect my migraines got worse due to stress from my final year of undergraduate (I decided to be a masochist and enrol for a postgraduate degree straight after) so maybe I will continue with the remaining propranolol but cut it to half and only take it at night (makes me too tired during the day otherwise) / cut it off completely and see how I cope and just keep topiramate in my cupboard for now.

      Ah, I'm just going to shut up. Super sorry for such a huge comment (its more like a post then a comment!), hopefully you are faring well with topamax :)

    3. Hey, hey
      A) BOOT thing is TERRIFYING.....I always check my pescription when I pick it up - as used to always get the wrong type of imigran injection etc etc but that type of dose change can be dangerous/have such an impact when starting a new drug
      B) I do totally understand the reluctance to starting a new migraine preventative when you're studying. It did take a while for the side effects to ease for me and I'm not sure I could have held down a full time job - but 25mg is a low dose - I actually started on 15mg so that might be something you want to talk about with your GP, you can get a sprinkle formula - and you can increase the dose at your own speed. As you've seen side effects vary enormously and for me it's been totally worth it - my migraines are now far less severe and intense. I'd also say can you go back to your neurologist (migraine specialist) to talk about all of this. I don't know where you're based but cutting up pills is never a good idea or messing around with doses etc - as working with a good migraine specialist really is key - seeing them every 3 months while we figure out doses get things sorted and have a plan. I'm doing really well now on Topamax, and I know several other migraineurs who are also very happy on it too - and I hardly have any other side effects, of all the preventatives it's been the best I had - though I do also have Nerve Blocks, physio and several other treatments - we have to look at the whole picture after all. And as you say you have some type of epilepsy (is that right) you really must be careful and look after yourself - and get all the help you can! So I don't know if you're taking any medication for that - as I'm sure you know Topamax is primarily and anti-convulsant...but not being a Dr I've got no idea if that's how they would treat you - you'd have to see your neuro. But slightly loss of consciousness/dizziness - as you describe are common to some migrainuers - especially Basilar migraineurs - anyway, I'd vote you go back to your neuro just to chat about all of this again and go over all the options. Plus your GP might be able to refer you for some CBT if you think that could help with the anxiety etc etc?

      Good luck!! :) x

    4. Hey Victoria!

      Thank you so so much for your reply! I was really stressed and a bit frustrated about the whole migraine situation and your reply just helped :) sorry about not replying back sooner!

      1. The Boots thing is pretty terrible! Especially when thinking about the side effects of topiramate specifically :O I went back to have a go at them and was assured that they will put it through to inquiries but I think I'm going to write to the head office to find out the outcome. I am also never going to Boots again! My pharmacist friends were saying how busy pharmacies make mistakes (no excuse, if they are busy they should be even more careful!) so I'm going to stick to my local small pharmacy!

      2. I think I was just feeling frustrated esp coming to terms with the fact that I have a chronic disease I will need medication for, possibly for the rest of my life. As I mentioned before, I went to see my GP about propranolol because it was really getting me down, tired, etc! I had flu at the time so I cut back to one a day / none for a week and she told me to slowly stop before starting topiramate. So far I've been off medication for almost three weeks and the changes in my mood / energy kind of shocked me. I've always been a happy hyper kind of person and I didn't even realise how the depression and lack of energy slowly creeped up and took over :/ since being off propranolol, I've had around 3 beginning migraines, the first 2 I ended up sleeping off / using tiger balm, inhaling steam, etc. I had a really bad / throbbing one on Monday and ended up taking some Aleve (naproxen) for it and it didn't come back later on (my migraines last around 2 to 3 days)!

      3. I am really looking forward to your Topamax part 2 post! I looked at your last post when you met up with Twitter friends after their NMC appointment, are you thinking of coming off Topamax now? I'm just mostly concerned about the possible depression, tireness and loss of concentration associated with topiramate! Just the thought of going back to the same sad and tired zombie I was on propranolol makes me want to cry :( how long would you say it takes for side effects to subside? Maybe I came off propranolol too quickly (2 months and few weeks) :/

    5. 4. I used to get epileptic fits when I was young. I recently had a lapse and the doctors suspected it could be partial epilepsy but they didn't find anything wrong and so diagnosed the symptoms with migraine. Reading up on basilar migraines on the site (thanks for that! It seems very informed) it does feel like my symptoms match that more than anything else. I think educating yourself is sooo important for people living with something chronic / more long term. After coming across your site, I checked out a few places you linked and am planning on buying your migraine bible lol.

      5. I've just finished a CBT course that ran for 8 weeks and it was really helpful :) I also got to speak to some people who were on propranolol for a long long time & helped make sense of how I was feeling on them.

      6. My neurologist discharged me after my MRI and EEG came back negative for epilepsy. I don't think I can go back without a GP referral :/ I spoke to my pharmacist and GP family members about my symptoms, different pills, etc. I've been off preventive medication for a while now and though I have had a few migraines, I've managed to subdue them relatively quickly. Its funny but I've noticed that I felt an almost impending doom each time my head felt funny since my migraines before medication were really bad. But that didn't really happen, and reading about it, I know usually preventives help break a cycle of chronic and severe migraine so I guess that's what happened / I hope so? As for the migraines right now, I'm trying to prevent them by avoiding some triggers I've identified, so hopefully I can keep them at bay. If I do get one, I'm planning on taking some pain killers / triptans (tho I will have to be careful to not abuse them, least I get rebound migraines) and hopefully it won't disable me and confine me to my room!

      7. Lastly, sorry for the HUGE comment. I was going to mail it to you but thought if someone is on a similar boat, maybe my essay will help? I was feeling really hopeless about my migraines but your site and others really helped educate me and calm me down. I think the migraine community needed a place to come together and not feel useless and weak for not being able to handle 'just a headache'. We need to raise awareness about migraines and how severe they can be & fingers crossed that research in future can help us with 'cures' that don't have a long list of side effects!

  32. Hello everyone, and thank you for the very insightful comments. Although I do take topamax and have been for years. 200 mg twice a day, , I take it for my seizures. Is there any one that takes it for that? I do know it helps with migraines but it does nothing for mine and unfortunately I can only take Tylenol. I do suffer the horrible stabbing pains in my toes and legs, hands, and for.that I take neurontin, which makes you gain weight so the two cancel eachother out.:( Just wondering if that's anyone out.there who.can relate. ...ashley

    1. HI Ashely, sorry to hear of your troubles I'm sure there are many who can relate. Did you see my more recent post about the links between epilepsy and migraine. I take it your Doctor has taken you through the range of many migraine drugs - including the other ones left in the anti-siezures. Re migraine meds do you mean you can't take Triptans? Hope you're having a migraine free weekend! Victoria x

  33. Haha! Thanks for the laughs! I've just started topiramate over the past month, ( is there a difference between that and topomax? ) - I suffer from chronic migraines and headaches for the past 4 years(I'm 21- was on amitriptyline and propranolol before) and so far it hasn't made a difference. Though I've been feeling absolutely horrible on the meds, extreme nausea, loss of apetite and extreme tiredness.. Does it get better??

    1. Ola! Topiramate is the 'real' name for Topamax - which is the brand name - so yes it's the same!! I was on both those other drugs too and they didn't do much for me either. But in short, for me, yes it did and does get better if you can stick with it!! For most of us the side effects do ease - but it does take time - I only increased the dose when I felt each awful side effect beginning to ease, then I went up as couldn't cope otherwise - but it was a bumpy ride but really worth it as my migraines are doing a lot better now! Most of these drugs, as I"m sure you know, can take a while to kick in and people do often give up too early - though if you have the really horrible scary side effects you have to but if you can bear it it's worth it....well it is for me! Good luck!! p.s I MUST write part two of this....

    2. Please do write Part 2, I'd like to hear how topamax worked out for you. I'm thinking of trying it myself, but am scared off by all the side effects. Thanks.

  34. Topamax drug is especially prescribed for the migraine problems.It is quite good remedy to solve the one side head ache withot any side effects.

  35. Hi victoria,

    I have been suffering with horrible migraines for several years now..My doctor has recently written a script for Topamax and was hesitant to take it due to the side effects..I have decided to go the alternative route of chiropractic care and holistic medicines..just a note to your readers;many migraine sufferers have an underlying thyroid issue and if you do not treat it , all the medication in the pharmacy will not help you..eventually the migraines will return along with other secondary problems .. I have enjoyed your blog and hope that you find some relief from your migraines!

    sweet blessings,

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  38. I started on topiramate in November 2012 and the hair loss started in about January, I believe. I have thin hair anyway, so any loss is a big loss to me. I had a continuous migraine ... I mean, it never stopped. I would take Imitrex and the migraine would stop for 12 hours, then start again almost like clockwork on the 12-hour mark, so I'd have to take more Imitrex. My migraines are caused from osteophytes at C2 pushing on my occipital nerve, so there's not much can be done, short of neck surgery, I suppose, but docs don't want to do surgery that close to the brain stem. Anyway, when I noticed my hair falling out, I went to my GP who ordered thyroid tests to make sure that was not the cause. The testing came back okay, and he just sent me on my way, telling me he didn't know why my hair was falling out. It wasn't until I started doing research and found out that the topiramate was apparently the cause. The other side effects, which I knew were related, were the tingling in the hands/fingers, loss of appetite, and it also gave me double vision. I really had "trails" if anyone knows what they are, and my neuro said that could be a sign that the meds were causing glaucoma. I was only on 100 mg of the topiramate a night, so not a really high dose. I started weaning myself off it at the end of February and have been completely off it since mid-March, but my hair continues to fall out. I daily take 500 mg Biotin and a multi-vitamin, but it doesn't stop. I bought Fructise Fall Fight shampoo which seems to stop some of the loss, but you have to use it every day or the loss just seems more extreme at your next shampoo. My hair also looks like I've had chemo... the ends looked burned and frizzled. I haven't had a migraine since I've been off it, thankfully, so maybe it permanently did something to my occipital nerve ending. I sure hope so because I refuse to go back on that stuff! I'm at least starting to feel like a person again with real emotions. I just felt flat, emotionaless when on it. I actually laugh out loud now. So ... happier, but still a little depressed over the hair issue. I just don't see the loss slowing down, even after stopping.

    1. Hey! So sorry to hear about the hair loss - so scary - I had a very very minor version of what you had - I started to notice more coming out in the shower and when I brushed and blow dried etc - but luckily, as with most other side effects it seems to have stopped and I'm so sorry this isn't the case for you - but fingers crossed that it seems to have had it's affect on the migraines themselves and maybe the hair will start to re-thicken? Hope you're well.

  39. Thanks for the great post!
    My neurologist started me on this drug about a week and a half ago... It's funny.. The only side effect she really pointed out was wieght loss- added to my current mix of adderal, kolonopin, fluoxetine, and misc vitamins for energy- no other side effect was really pointed out.

    I've got chiari- in short a brain condition that very seldom my has effects on people, so my doctor doesn't believe it has anything to do with the issues I've been having. Luckily my neurologist disagrees and listens to me.

    I started feeling tingling in my toes, feet, nose, abdomen, and arms. Weird, but okay.. Adderal has already gotten me dehydrated- now at least I'm drinking, but I'm always thirsty!
    I've been having trouble sleeping- due to restlessness and stomach problems, waiting for these to die down.

    1. Hi Amanda, yeah most of what you're describing seem to be, from what I can gather, pretty common side effects for Topamax - the tingly stuff - and the constant thirst - I thought I was dying!! But - they did fade eventually as I increased my dose very slowly - and hopefully this will be the case for you too! Fingers crossed and let me know how you get on! I also seem to be the only person on the planet who didn't lose any weight on this drug....

  40. Best thing I've read in such a long time! I have taken 100mg 2x a day for 2 years and after fwding this to my husband he called my cracking up. You put light in a world that often requires eye masks and total darkness :-P

    1. Hi Anonymous - thank you! Hope you're doing well

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  44. I had protracted migraines lasting 60 to 90 days in a row several times a year. I built up a tolerance to every med over the days that the migraines lasted. I was so low and I'd even have the vision distortion without the headache sometimes.

    All of this magically disappeared after I had my last period - menopause. I still can get headaches but not migraines or protracted ones. I know of one other woman who also had a lifetime of migraines disappear after menopause. Some migraine sufferers I know would have one if they ate chocolate or an orange, but I think they are hormonally driven. I wonder if birth control pills would help. I did not have migraines at puberty and it wasn't until I was around forty (with menopause occurring around age 52) that they began.

  45. Hi Victoria

    Good blog and good tweeting. Thought I should finally get in touch ...

    I was finally diagnosed with Migraines by my neurologist back in April - it took 7 years of being told I was suffering from repeated bouts of labyrinthitis because I don't actually always get the headache phase. However, eventually, after the episodes were happening monthly and then moved to fortnightly (each episode lasts 4 days) and I'd had MRI scans and seen enough ENT people to sink a battleship, my GP finally saw me when I was having an 'episode' and saw my lopsided face and decided to refer me to a neurologist. After 20 minutes with him, he agreed that I had migraines and that they were triggered by my hormones. (the joys of the menopause)

    He decided that Topiramate was the best course of action, so I dutifully went on it and gradually increased the dose week on week. First week was plain sailing and then I just went into zombie world. I wanted to persevere with it because I can't live my life (and work to pay the mortgage!) being incapable for a minimum of 8 days every month, and the neurologist had said that I couldn't expect to see any improvement until I was up to 4 tablets a day, so I took a month sick leave from work to get through it.

    At top dose I had all of the following - most of it worse in the morning and getting better by midday:

    * stomach the size of a beach ball
    * drinking and weeing all the time!
    * tingling hands and feet - but only when i do something physical
    * dry eyes
    * dizziness / light headedness
    * general tiredness and weakness - it takes me ages to get going in the morning and I get worn out after having done very little which is really frustrating (I'm a jump out of pink planes and hike to Macchu Picchu kinda bird ...)
    * a bit of drooling would you believe (that was was really embarrassing)
    * but mainly cognitively severely below par. Slow in thinking, speaking, unable to concentrate, forgetful. Impossible to work when I'm like this (hence the sick leave) and scary to boot.

    Generally, I have had fewer migraines and the ones I have had have been less severe (though that might be because I'm comparing dropping from a lower operating level than I would be when I'm functioning normally in a work situation), but I've not been me and that makes me really miserable ...

    As a result, I've agreed with my GP to reduce my dose from 100 to 50. I was down to 75g last week and already felt brighter and have just gone down to 50. However, I got a migraine on Sunday and am just coming out of it now. I wasn't as severe, but I still couldn't have worked. I'll probably work part of tomorrow though and see how I get on, but I'm running out of paid sick leave and the mortgage is waving!

    What to do? What to do?

    I guess I'd almost rather have more migraines and feel like me in between than have no migraines and be 'someone else' unless they can find some other wonder drug which will have the same effect but isn't so 'dirty'. Seems like that's my current choice!

    Anyway, are you still doing OK on it? How much do you take? When do you take it? I'm currently taking 1 in the evening and 1 in the morning and it is the morning one that does me in. I set the alarm for 6am so I can take it early and then sleep it off so I can attempt to be compus mentus to work by 10am! What sort of regime do you follow?

    Do you ever drink on your Topiramate? ;)

    Have you, in your research, ever come across any progesterone treatment / injections for people who have migraines triggered by hormones? I think they are used in the States, but when mentioned to UK GPs, the general response is that it isn't proven over here so they're not keen to discuss it. I was going to write to the Migraine Trust to see if they have any information on it, but just thought I'd ask you seeing as you seem to have done quite a bit of poking about already!

    Hope this thread isn't dead and I've missed the boat!



  46. I too was on Topamax... It was a wonder drug for me...
    I had fewer severe migraines (I suffer daily, nothing helps), w/ the added help of low dose codeine, Iwas able to function and once again enjoy life and LOST 80 pounds!!! **angels singing**.
    I too had several side effects, but it was worth it...
    The thirst, Oh GOD, the thirst... And as I read your story, I laughed... I craved O.J. too... And water, the O.J. tasted like crap, but my body needed the Vitamin C that Topamax sucked out of me (I was on 400mg a day)... And any other type of drink I tried tasted like crap... Soda was out, it tasted like pure syrup, and food, my favorite pumpkin pie tasted like sawdust (loved your description of that, most people don't understand it), anything sweet was horrible, I'd have to eat the bitterest of bitter dark chocolate for it to taste good (talk about screwed up taste buds) and eating anything other than a kids serving at any meal, made me feel like I was going to explode... Guess it was b/c of all the water... LOL
    I'm sadly not on Topamax right now, due to no insurance, but I'm hoping to get back on soon... I can't take many more of these daily horrible migraines...
    Wishing you all the best, side effects included...
    I dealt w/ the pins and needles, thirstiness, food tasting bad, sleepless nights, slight rage, very bad concentration (not good for a bank teller), I do have a retina that's deteriorating and the weight loss (I gladly welcomed that)...
    Take care and keep writing...

    1. Hey Starlene,
      Sorry it's taken me so long to get back to you! I'm having huge issues with the blogger filter right now. Ah the dreaded thirst! But as you say, at least it helped. God I'm so sorry that insurance means you can't get the help you need - I always forget how lucky we are here in the UK with the NHS system. Really hope you can get this sorted out soon!

  47. Just happened to come across this and thought I would post something positive about topamax amidst all the hate. I was started on topamax at 16 years old when I was diagnosed with epilepay. Being overweight the dr made sure to mention that I would probably see rapid weight loss but eventually it would even out. That is exactly what happened. I lost a lot of weight extremely quick. It controlled my seizures just fine. The only negative side effect I had was that sometimes I would feel like I wasnt in my body. Its weird to explain but once I got up to my full 200mg dosage that went away. The drug worked wonders for me. After taking myself off of topamax (against drs orders) for no reason other than to feel rebellious I have reconsidered that decision. I enjoyed topamax so much I have considered taking it again because of the weight loss and how great it made me feel. In the medications defense it can be a really great drug. I guess it just depends on the person. I must be one of the lucky few.

    1. Hey! Thanks so much for giving the positive message. You're right - this drug does get a bad rap but it does help lots of people too, like me! Hope you're doing well and are healthy!

  48. OMG...Topamax. I stopped taking it after a week on it. NOWAYEVERAGAIN. And the weight loss thing, I'm sure the quacks just tell us that because they have a huge overstock in some cupboard somewhere!

    1. Hey Kim, I'm now discovering that a few, like me, put weight on. I guess it's so individual, right. Hope you're well and have found a treatment plan that works for you!

  49. Hey Julie! Thanks so much for sharing all of this with us all - I've been terrible at getting back to comments on here because they all got stuck in a filter! Urgh! x

  50. Is there a part 2?!?! I just found your blog during a tempter tantrum of migraines-are-ruining-my-social-life. I am also currently suffering through the dreaded first week for Topamax.

  51. Have you tried MigreLief with Topamax to lessen the side-effects? My neurologist recommended it and eventually weaned my off of Topamax using the MigreLief supplement. It first cut my Topamax side-effect/symptoms in half and then I realized I didn't need Topamax so much. My hair is now growing back which is a huge plus too. I was getting weekly migraines. I get one every 6 months...maybe, but Advil alone will now make it go away, I don't even need an icepack. It is non-prescription and contains Riboflavin, Magnesium and Feverfew. I give it to my daughter as well who has other problems, so our pharmacist told us to nip her migraines in the bud with MigreLief as well. Unfortunately for us... migraines are a family affair so I hope they never stop making this stuff.

  52. Hey Victoria,
    Love the blog it's absolutely hilarious! I've been on Topamax for about five years now I believe at 200mg a day. Now I love it. It keeps my migraines down to 3-4 a month opposed to 3-4 a week.
    That being said, yes it does have side effects. I have memory loss, trouble finding the right word, I repeat myself a lot, diarrhea, acid reflux, and the thirst which I never attributed to it until reading your blog. BUT I would rather deal with those than migraines every other day.
    I think with Topamax it's really about what you're willing to put up with in order to help lessen your migraines. Granted I haven't had what I would call "scary" side effects. Although it does make me sad sometimes to think that I no longer have the memory retention to really go back to school if I wanted to. Maybe if I took one class at a time. Lol
    As for side effects going away some will ill give you that. But know that a lot of the neurological ones don't. And for some people do only get worse. I haven't noticed that mine have really worsened any, or maybe I've gotten used to them! Lol I know that people that know me have gotten used to me saying "oh what's the word? I know it. I was just thinking of it. Its right there. Oh well it'll come back to me."

  53. Hi Victoria,

    Loved your entry and totally could relate to it. I am different from probably everyone else on here so I thought I'd share my story. An off label use of Topamax is treatment for alcoholism. I confessed to my psychiatrist that I had a problem with my wine consumption and it's bad because I'm also on antidepressants. Topamax is pretty much the only drug that can be prescribed while a person is trying to drink less or stop completely. I've been on it for 2 weeks now and I'm not really have any reduction in cravings. I, like you, was initially terrified about getting on Topamax after reading about it on the internet but have had no side effects except for what I think might be hair loss and I'm extremely concerned about that. I see my psychiatrist again on Nov 1 and if there has been no change, I'll get off of Topamax because it's just too serious a drug. I'll start up with the prenatals (prenatals are indeed always recommended for thinning hair as I've taken them in the past) and see if that might counteract.

  54. I'm one of the people for whom Topamax has been a "miracle" drug, and I don't want to ever stop taking it. I've had some side effects, to be sure - but none so bad as lying in bed for years with head pain so bad I wished I would just die since I already had no life left.
    I get angrier now than I used to but I never would have ascribed it to Topamax - I usually ascribe it to being clear headed enough to get angry at people who deserve it. Before, when I was constantly sick, people just took advantage of me a lot and I sat around and cried over it. I've never seen anger listed as an official side effect.

  55. I've experienced the foggy memory, weight loss, and my poor hair :( But it has helped my migraines a lot!!! Thinking about taking myself off of it but scared of the migraines and has anyone experienced weight gain after getting off this?

  56. Hi Julie! I loved your hilarious article. I've been a migraine sufferer since I was only 5 years old. I've been on Topamax for about 4 years and I've had all kinds of side effects good and bad. I started on 25mg and worked my way up to 200mg. Right now I'm more stable and only have to take 100mg daily. I did lose weight in the beginning (about 25lbs) I wasn't all that big to begin with. I'm 5'5" and was 155lb then and after losing weight I just melted back to my 120lb 18 year old self. I was ecstatic because I looked great and had fewer migraines. However I was sleepy in the morning and my memory was (still is) jacked up, I mean I was forgetting names, dates, important appointments, what did I go in the kitchen for...etc. I do get the pricks and needles but they're occasional and not a big deal. I didn't lose any hair either. I do get super thirsty and always have water with me. I even bought one of those water bottles that come with a small filter, since I live in New York City and our water is not that bad if you filter it. Now about the weight loss: IT IS NOT PERMANENT. I've been on the drug for a long time and about a year ago, even though I was on the peak dose of 200mg, I started putting on weight really fast for no reason. I'm a vegetarian now and I get regular exercise because I wanted to make sure I didn't put on weight again, but regardless of that I'm back on 150lb and I'm stuck with Topamax because if I stop taking it I get my headaches back. Some people say that when you get the generic version, if your pharmacy switches brands you may put on weight, maybe that's what happened, but still I don't understand why it won't work anymore. So, if you are planning on taking it exclusively for weight loss it is not worth it.

  57. Hi Julie! I loved your hilarious article. I've been a migraine sufferer since I was only 5 years old. I've been on Topamax for about 4 years and I've had all kinds of side effects good and bad. I started on 25mg and worked my way up to 200mg. Right now I'm more stable and only have to take 100mg daily. I did lose weight in the beginning (about 25lbs) I wasn't all that big to begin with. I'm 5'5" and was 155lb then and after losing weight I just melted back to my 120lb 18 year old self. I was ecstatic because I looked great and had fewer migraines. However I was sleepy in the morning and my memory was (still is) jacked up, I mean I was forgetting names, dates, important appointments, what did I go in the kitchen for...etc. I do get the pricks and needles but they're occasional and not a big deal. I didn't lose any hair either. I do get super thirsty and always have water with me. I even bought one of those water bottles that come with a small filter, since I live in New York City and our water is not that bad if you filter it. Now about the weight loss: IT IS NOT PERMANENT. I've been on the drug for a long time and about a year ago, even though I was on the peak dose of 200mg, I started putting on weight really fast for no reason. I'm a vegetarian now and I get regular exercise because I wanted to make sure I didn't put on weight again, but regardless of that I'm back on 150lb and I'm stuck with Topamax because if I stop taking it I get my headaches back. Some people say that when you get the generic version, if your pharmacy switches brands you may put on weight, maybe that's what happened, but still I don't understand why it won't work anymore. So, if you are planning on taking it exclusively for weight loss it is not worth it.

  58. Hi Victoria,

    I loved your wonderful article. I've had horrible migraines since I was 5 years old. I had tried everything until my neurologist put me on Topamax 4 years ago. I started on a low dose that was increased every week until it reached 100mg. I've taken up to 200mg per day. I've experienced all kinds of side effects good and bad. I lost weight (25lbs) and kept it off for about 3 years. I wasn't really that big to begin with. I'm 5 5" and 155lbs then and I literally melted to 120lbs within 3 months or so. I became a vegetarian to make sure I could keep the weight off on my own and also because I have high blood pressure. Unfortunately, despite a healthy diet and regular exercise I started gaining weight very rapidly last year and I have not been able to lose it. Im 150lb once again and totally miserable. Some people say that if you take the generic version of Topamax (Topiramate) if the pharmacy switches brands you may stop losing weight or you may get new side effects. Maybe that's what happened, but I have no idea why it stopped working. I was on my peak dose when I started gaining weight (200mg)
    The problem is that I'm stuck with this drug that has really awful side effects like memory loss and increased thirst. Although I didn't lose any hair or had suicidal/homicidal thoughts (Good grief!) I truly believe Topamax turns your brain into mush, since I forget names, dates, my own phone number, important appointments, what I went in the kitchen for, etc. I depend on my agenda and the notes app on my phone for everything because I have to write everything down otherwise it "never happened". Also I am always SO thirsty and have to carry water bottles everywhere. I had to buy one of those refillable water bottles with a filter because if I ran out of bottled water where I couldn't buy more I can just refill it from the tap or drinking fountains. I live in New York City and luckily our water is not so bad if filtered. And if I stop taking it after 2 days my headaches are back and much worse. Bottom line, for anyone considering Topamax as a weight loss aid, IT IS NOT WORTH IT.

  59. Hi there, Happy New Year. I am so glad I came across your blog on my search for Topamax side effects. Funniest thing I have read in ages. You should write a book! I had never had a migraine in my life until the end of 2011. In fact I didnt even know I was having migraines until 18 months of tests, 2 ENTs, 3 doctors, MRIs, medication, and finally neurologists decided I had an unusual form of chronic migraine. I was in a constant state of pain that no pain medication could touch. Until they started me on Propranolol last September. Things were tough in the beginning, I had the extreme thirst that you spoke of with that (funny), but gradually things seemed to get better, until I hit a wall. Stuck between not being as bad as I was, but still having a long way to go, the neurologists decided I needed to try something different. So I find myself about to embark on the adventure that is Topamax. I have read so many horror stories, that I nearly decided that this half way house I was living in was better than becoming a nut job. I then changed tactics and decided to search for Topamax success stories, and there are a lot out there, an awful lot. It does seem to be one of those medications that if it suits you, it can revolutionise your life, but if it doesnt, then its dreadful. I've got to the point where I am willing to take the risk, just to try and gain some kind of normality (I cant remember what thats like). I am thankful to have a great neurologist and doctor who are working closely together, and closely with me to get me as far as they can. We are starting off low (25mg) and increasing by 25mg fortnightly, slower if need be. I was going to expect the worst, have apologised in advance to all my friends for any behaviour that might occur, have got close friends and family to keep an eye out for anything worrying, but I have to say I am also feeling quite positive, and going into this with a degree of faith that this is going to work.

    How are you getting on with it Victoria? Are you still improving? Keep us updated.

    Thanks xxxx

  60. Hi there, Happy New Year. I am so glad I came across your blog on my search for Topamax side effects. Funniest thing I have read in ages. You should write a book! I had never had a migraine in my life until the end of 2011. In fact I didnt even know I was having migraines until 18 months of tests, 2 ENTs, 3 doctors, MRIs, medication, and finally neurologists decided I had an unusual form of chronic migraine. I was in a constant state of pain that no pain medication could touch. Until they started me on Propranolol last September. Things were tough in the beginning, I had the extreme thirst that you spoke of with that (funny), but gradually things seemed to get better, until I hit a wall. Stuck between not being as bad as I was, but still having a long way to go, the neurologists decided I needed to try something different. So I find myself about to embark on the adventure that is Topamax. I have read so many horror stories, that I nearly decided that this half way house I was living in was better than becoming a nut job. I then changed tactics and decided to search for Topamax success stories, and there are a lot out there, an awful lot. It does seem to be one of those medications that if it suits you, it can revolutionise your life, but if it doesnt, then its dreadful. I've got to the point where I am willing to take the risk, just to try and gain some kind of normality (I cant remember what thats like). I am thankful to have a great neurologist and doctor who are working closely together, and closely with me to get me as far as they can. We are starting off low (25mg) and increasing by 25mg fortnightly, slower if need be. I was going to expect the worst, have apologised in advance to all my friends for any behaviour that might occur, have got close friends and family to keep an eye out for anything worrying, but I have to say I am also feeling quite positive, and going into this with a degree of faith that this is going to work.

    How are you getting on with it Victoria? Are you still improving? Keep us updated.

    Thanks xxxx

  61. Hey Victoria!!!! I hope you are well!! How have you been?
    I ended up here on your blog because my daughter Victoria is also taking this med. and she has been very strange and difficult since doc doubled her dose from 25 to 50mg day. As i read your post and others answers I realize how much it has effected her. I have lived 50 years with migraines, thankfully not everyday or month...but when they come its a tsunami. BUT...i prefir the tsunami once in a while than being a daily zombi. i cant afford losing my job....k

  62. I have thoroughly enjoyed reading all the comments & your blog, I have had migraines since 11yrs old, been on trip tans for 16yrs however Iam suffering daily now, went to G.P. & she wants to stop the additional co codamol

  63. I too am surprised at all the tmax hate. I do have some side effects, but my neurologist, who IS a specialist in migraines and other headaches (important) my dosages and effects carefully. He has me not just on topamax..but on a tyramine-free diet (which the National Headache Institute recommends, along with more widely known foods to cheese..chocolate. .caffeine. .etc); a very low gluten diet, a beta-blocker, and now we are going to try botox injections..not cosmetic botox..but 42 scalp and neck injections called "allergan" here in the states. You must have 14 migraine events (4 hrs or more) per month and have tried 4 of the five things I mentioned above to have insurance pay for it as it is rather expensive but has a very high prevention rate for migraine, cluster and tension headaches. Combined with the diet and prevention's a plan for striving to not need an abortive or pain med. I am not a candidate for a triptan so I must endure or take a narcotic. I have been dealing with migraines for 20 years and even had a hysterectomy early to relieve the week I was down and out from the trigger of cramp leading to acute onset. Topamax didn't lessen my frequency did help my intensity. Based on all other medications and diet changes (which have been hard..not lying)..I have went from daily migraines to about 20 a month
    After the botox next week..I should be able to see in 3 months (its a 3 month injection cycle), if it lessens 50-90 percent as the average patient records claim. Would be interested if anyone has had experience with this regimen. Betas..tyramine free..gluten free..and of course botox. .but only botox from your neurologist. .plenty of cosmetic doctors claiming to give it for migraines..I was duped..the key..did your insurance pay? If was done right.. and where were the shots? Neck..scalp and upper temple vs temple, brows and eyes only. Also..300 mgs tmax. 100 morn 200 night. Only slight hair loss..little confusion. . No thirst. Guess I am lucky. But I am easily angered.

  64. Love your blog! I have been suffering from chronic migraines for about 15 years now and thought I had tried everything for prevention. Then I did some more research recently after a particularly difficult month and came across Topamax. Went to my doctor today and got a prescription. Hesitant but hopeful, I took my first one this evening. Already my beloved diet pepsi tastes like arse. Which is a good thing I suppose considering I'm trying to stop drinking it anyway! Also having some mild tingling already in my hands and face. I think I read somewhere (not sure how credible it was!) that people who have this symptom tend to have better success with migraine prevention on this drug. I just want it to work! Willing to try just about anything at this point, so possible scary side effects - get at me! And admittedly I too am really hoping the weight loss bit is true for me! I recently put on quite a few pounds for no apparent reason so I'm eager to get that off!!

  65. Victoria,
    I am literally crying I am laughing so hard-- I am 3 mos on Topamax and your inner dialogue with your neurologist was exactly mine with my migraine specialist.
    I practically blew the tires off of my Jeep making haste to the pharmacy with that weight burning prescription!!
    So far so good. Side effects? Yes. But I lost the weight my 40 year old self couldn't lose even working out 3 days x week and my migraines are less agonizing.
    Please keep writing.
    You have a gift --- and have gained a fan!!

  66. Hi Catherine! Thank you so much and I do hope the topamax keeps working for you! One day I will get round to writing part two!

  67. Hello Victoria! I just happened to come across this while looking up side effects for a medicine I just got for Pseudotumor Cerebri called Inderal (which by the way I've been on them for 4 days and absolutely hate them so very much). But I got Topamax when I was 15 and oh dear it was not good. I took them for 3 months and I was miserable, it took 3 more months to get it all out of my system. I had almost every side effect possible and then some. During the six months I was so sick and nauseous to the point I could not get out of bed. I could hardly eat and when I did it came back up anyway. I have never had a problem with gag reflex but during the 6 months I could hardly drink water without gagging. I've heard from so many other people that it has happened to them as well but I am glad it is helping you.
    I was just curious I guess if this has happened to anyone else.

    It's been 7 years since I've been off of them and I still have a terrible gag reflex and other side effects and I honestly don't think it will subside.

    Sorry this was long I just haven't really told a lot of people because I feel I will be seen as crazy if I am the only one.

    Have a good day and good luck with your migraines.


  68. Hi,
    Have you heard of anyone taking this medication for mood control? My doc just started me on it after getting a second opinion from a specialist to help me with my mood swings caused by my constant pain and discomfort from 3cronic pain disorders.... I have never suffered from migraines thankfully and this medication is kind of a last resort because I am on 12 meds already that interact with a lot of meds and things have been going good so far but I'm woundering how it will effect my mood since I've read a lot about it causing rage and anger...I honesty dont know if my family could handle me being even more angry or basically what I'm asking is if you have heard anything about this...thanks

  69. I would love some advice for how people tapered off Topamax! My DR suggested I wean down from 200mg to 50mg for 4 days and then stop. I have read countless stories of those who had seizures and even a story of a woman who died of a seizure with NO history of previous seizures so I have been very nervous to follow his suggestion. I did go down to 100mg for 4 days and then 50mg for 4 days and now I'm down to 25mg and I'm on day 3. I am home alone most of the day so should I have a seizure I would not know or have any access to medical treatment.
    My DR suggested Topamax during a highly stressful time in my life. He said that it would help as a mood stabilizer and it would also assist me with losing weight. I was thrilled. I was having a hard time with anxiety and went to see him since he is an expert in his field. I trusted his advice and suggestion. After 3 days on 25mg I had my first panic attack. My anxiety sky rocketed. His suggestion? Increase my dosage. Guess what happened? I had panic attacks multiple times daily. I ended up in the ER begging for an EKG-insisting that I was having a heart attack. Everything came back normal. I was told that this medicine takes time to work and my DR denies the link between my new panic attacks and the topamax. Besides the attacks, I've also became fearful to leave my house due to the anxiety, blurry vision, flashing lights in the corner of my eyes (which again my eye DR says has nothing to do with the medicine) I can't form sentences verbally, no memory, deep depression, cannot taste carbonation, no desire to eat, no desire to do anything. I am feeling better since the tapering off but I would love to know what your doctors had you guys do. Thank you!

  70. I was wondering what your tapering schedule looked like? I was up to 200mg a day and my DR suggested I go down to 50mg for 4 days and then stop. I have read a bunch of stories about people having seizures from stopping too quickly-even those with no history of seizures (such as myself) I would rather be safe than sorry. I don't want to go against my DR but my DR isn't the one who is concerned about his personal safety and well being. He prescribed this medication during a difficult time in my life. I went to him because I was struggling with anxiety. He said Topamax would be a good mood stabilizer and I would love it because it would help me lose weight. He even said "there are NO side effects" After 3 days I had my first panic attack. His suggestion? Increase my dosage. He said there was no link between topamax and panic attacks. It was just the stress of my day to day life and circumstances. I went through weeks of hell. Blurry vision, flashes of lights, depression, nausea, upset stomach, no appetite, sore throat, headache, unable to form sentences, not wanting to leave my house for fear of embarrassment. I've only been on it for 6 weeks, thank GOD and I'm down to 25mg. Any suggested for successful tapering would be appreciated as I continue to have concerns about this very serious medication. Thank you!

  71. Hi I have been on topimax two weeks now and the dryness is killing me my nose is dry mouth but throat is by far the worst I have tried boitene ice saltwater drinking 24/7 without taking a breath lol will this ever stop? Did you ever find or here of anything that would help with this any suggestion would be greatly appreciated the medicine seems to be working but I'm constantly hacking bc my throat is so dry ugh,,, also I feel ally of pressure In my head sometimes?? Thanks so much!! Amanda

  72. Oh My Gracious I am laughing so super hard. Thank all of you for the laughs and stories and what a great read to stumble across in the early morning . I was up for a bit with my lil one and was looking up my meds because my dose got swapped from 300 down to 200 back up to 300 mg. I have been on Topamax for six years and I feel amazing.I have had very crazy to very mild side effects. I also have anxiety so it's hard to decipher so I choke everything up to that these days and take Klonopin to keep me calm. I very much enjoyed your blog and I will be looking forward to reading part 2. I hope things are going great for you and yours.

  73. Hi Victoria, I was wondering if your still taking the topamax? I just started taking it about a week ago and I'm super excited about it and I'm curious how it's worked out for you. I would love to hear from you!

  74. Wow. So many different experiences people here have had with this drug. Just came back from the neurologist with a prescription for Topamax. Thought I'd do some research before trying something new. Really appreciate the blog post, the sense of humour, and everyone who shared his or her experiences. At least I have a better idea what to look for and expect - as well as what to hope for!

  75. After reading the insert that my Dr told me not to read....I am scared. Starting it tonight. :( I gained weight on Lexapro...badly. I went fron 124 lbs to 144. I also take Sumavel Dosepro stuff ever even if it feels like ten bee stings at once. Magical.

  76. Anyone suffer from bad tinnitus whilst taking Topiramate? I'm on 25mg twice a day and the tinnitus has gradually got worse - it sounds like someones constantly blowing down the neck of an empty bottle in my ears. Also I have a constant metallic taste in my mouth. Been taking the medication for three months now and whilst the latter has been there from the start, it too seems to have got worse over the last few weeks without a hike in dosage.

  77. Hi Victoria. I hope you are having better results now. I have been on Topamax for a couple of years now but on a low dose. I had suffered with migraines since the age of 8 and am now 65. Every single day for almost 30 yrs, then prescribed a med that would rid them for a few days at a time. I really enjoyed reading your story and related so closely. I especially laughed when I read "...and my bastard Doctors have been keeping it from me for 13 years!!! It took every ounce of will power I possess not to reply: ..." Here is some information they kept from me and I felt exactly like that. I'd read in Reader's Digest that certain kinds of food trigger migraines. When I asked my doctor (who had been treating me for migraines), his answer was, "Oh yeah, migraines can be caused by certain foods or ingredients". Well, after all those years....
    Anyway, I was very lucky In that the only negative side affects I've dealt with from topamax are the hand & arm pins & needles and the dry mouth. The positive is the weight loss. I could be on a higher dose and should be because I still get migraines occasionally and if I eat the wrong foods but a higher dose leads to depression (for me).
    Migraines are no joke. I wish God's blessings to you and your readers.

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