Thursday, 24 October 2013

What do you DO all day? Questions for a Chronic Migraineur

"What do you do all day?"

"I wish I had all that time to myself."

"It must be lovely not getting up to an alarm clock!"

"Yes, but what do you actually do during the days?"

In the throes of Chronic Migraine and buggered up neck land, I couldn't work full time. I couldn't really work part time. This seemed to confound my friends and other innocent bystanders. They simply could not understand what I did with my long, long days of slumber. Many suggested hobbies from yoga to baking.

I, always politely, replied that if I was well enough - if I could -  I would love to laze around all day learning yoga and getting my baking up to Mary Berry standards. Alas, I would gently repeat, I have a chronic pain condition that prevents me from even doing yoga. "Yes but...." would always come the helpful response.

So, let me lay out a typical day for someone in the throws of Chronic/Daily Migraine or even any continuos pain condition. First, to be totally honest, it's all a bit of a blur. Secondly, people always forget (I'm including myself in this) how utterly exhausting pain is. Remember this and read on....

Day 1:

4/5am - Woken by deep stabbing in skull. It's like needing to pee in the night. You know you have to get up and do something - but you were enjoying sleeping. Get out of bed, start 'migraine protocol' of either injections, nasal sprays, possibly pain killers. While you're up (if you can actually stand) might as well get hot water bottle and ice pack. Re-position pillows that seem designed to provide no comfort or support at all. Turn on audiobook to distract you from pain.

7am - Alarm goes off. Every Doctor/Physio/Parent tells you that regular sleep patterns are key to managing such conditions. However, you've only just, about 10 minutes ago, managed to drift back to sleep. You attempt to sit up, wanting to maintain good sleep hygiene, you panic that disrupted sleep is a trigger for you. How will you get to sleep tonight if you sleep-in now! But even the act of sitting up makes you feel shaky and it's possible you might vom on the cat that is asleep on your feet. Return to horizontal.

9am - If the medication has had desired effect you will be able to drag yourself to the kitchen. You must eat to maintain stable blood sugar levels after all. You feel like a truck ran you over in the night. The effort of getting to the kitchen and eating is exhausting. Return to bed.

11am - Nope. Bugger. The medication hasn't really worked, it was just a brief respite, the stabbing pain and general body ache is back. You know this is going to be a 2-3 day affair. You will swim in and out of consciousness throughout the days. The main aim now, ironically, is to sleep. If you're lucky a parent/friend will bring food parcels at regular intervals. When you can focus enough to eat, you spend about 15 minutes contemplating the teeny tiny size and texture of rice grains. Isn't it a miracle? Such fascinating thoughts take up much brain space during this period.

2 - 3 days later:

Slowly emerge into the world. Today you feel capable of showering and wearing non sleep attire. But you are now in the full throes of migraine hangover, i.e feel battered and bruised, probably tearful and just want to go back to bed and recover. But you've been in bed for the best part of 3 days so you want to check that the world is still there. Plus, you have Physio, Consultant and GP appointments that you can no longer delay.

You bravely arrange to meet a friend for coffee. Coffee? Brave? Keep reading. The effort involved in physically getting to the meeting location will be almighty. But you will appear, to all intense and purposes, to look just dandy; a bit crumpled around the edges but no one would guess you hadn't spent the week baking and learning yoga.  You will have had a power nap in preparation, put on nice clothes and even brushed your hair. But this outing will probably re-trigger another attack so it's likely days 1-3 will be repeated (see above). But you decide it's wroth it as you desperately want human contact with someone outside the medical community.

You enter Starbucks (nearest coffee/tea place - don't judge). You order a soy chai tea latte and marvel at all the other (seemingly) healthy people milling about. You feel as if you're in the middle a 3D film, the world seems to have an odd sheen to it. You do not feel part of it.

You sit down to meet your friend, so pleased with yourself for making it this far.

"So, what have you been up to this week?" they cheerfully ask.

Sunday, 20 October 2013

JFK, Sex and Migraines

Happy Sunday all. 

After a little break - while I went on vacation -  normal blogging services shall be resuming. 

Here is a tidbit to amuse you today:

According to a new biography of the fabulous Jackie O, as reported by the Daily Mail, her errant husband - JFK - allegedly said:

"'I get a migraine headache if I don't get a strange piece of a** daily"

Charming. But I'm pretty sure I wouldn't have said no as he was rather dashing. 

Now this is not the first time The Daily Mail has offered sex as a migraine remedy. I also have a vague recollection of some Italian scientist delving into this matter....

Seriously though, does anyone know if JFK did actually get migraines? On recent said vacation I visited the Sixth Floor Museum in Dallas, Texas, former site of the Texas School Book Depository. It was a very thoroughly researched collection and I don't recall any mention of migraines..... 

Monday, 7 October 2013

Book Review: Migraine and Other Headaches by Dr Fontebasso. Guest Post.

The fabulous Daisy, of Migraine Memoirs, was the obvious choice to review this handy guide to migraines. Why? Because Daisy happens to be a patient of Dr Fontebasso who heads up (excuse the pun) the York Headache Clinic. Who better to compare the book (the theory) to the actual treatment (practise) and care given. Daisy's review makes for interesting (and very honest) reading - and, I must confess - I completely agree with her analysis. But you'll have to read on below to find out what that is!

To discuss the book, and general migraine issues, with the rest of the Book Club Members join us tomorrow (Tuesday 8th) for a private, on-line, group discussion. Directions at the bottom of this post.

I was excited when Victoria asked me to do the review for the book club this time, mostly because the book is written by my specialist at York Hospital and I could draw comparisons on my experience at the Headache Clinic at York Hospital’s Department of Neurology with the book.

Firstly, a note about the way the Headache Clinic works at York Hospital for migraine sufferers like myself.  On my first visit I had a 30 minute appointment with Dr Fontebasso, the book's author, who then provided my diagnosis of Migraine Without Aura.  After that, I return every 6 months but each visit after the first one is with the specialist nurse, Jill Murphy, who I noticed was mentioned in the acknowledgements in the book, so I have had minimal contact with Dr Fontebasso despite the fact she is my specialist doctor.

The fabulous Daisy on her wedding day!

The book itself is broken down into various chapters which range from defining migraine and other headaches, diet & lifestyle and other complementary therapies, through to both preventative and acute treatments.  I think the chapter subjects themselves were well thought out, covering a wide area of topics. The format of almost all of those chapters however, is a brief introduction to the topic by Dr Fontebasso followed by the rest of the chapter being questions and answers. Judging by the specific situational nature of many of the questions, I believe the questions are largely asked by real people.  

Unfortunately, the result of this format structure is that the questions and answers are extremely repetitive and you have to read through lots of almost identical answers to find the occasional new piece of information or advice.  This was a really tedious way to find out the information Dr Fontebasso was trying to convey to us, and left me feeling really frustrated.  Even more frustrating I found, was that there were even some questions which we repeated verbatim in other chapters.

Leaving the frustrating formatting of the book aside, I was naturally comparing my experiences at the Headache Clinic at York Hospital as I read it.  The introduction I thought was very good, recognising that every person is different and that you need to understand a person's full story to understand their headaches or migraines the best.  This was reflected by the full and thorough history Dr Fontebasso took from me on my first visit at the hospital and I hope this was all passed along to the specialist nurse who I have been seeing ever since, as this was never something she asked for.  In the introduction Dr Fontebasso describes the format of the book as being designed to best empower the reader to find out and understand their own problems as best they could, but I think the same information would have been much better disseminated in a different format.

I found it interesting (on page 14) in the chapter about what migraine is, that Dr Fontebasso doesn't recommend detailed diaries are kept, as this focusses too much on the negative.  I strongly disagree with this as I think a detailed diary helps each person to understand what their triggers are so that they can better manage them in the future.  From my experience at York Hospital, the specialist nurse has asked me to keep diaries for just this reason so I found this contradictory from my experience at Dr Fontebasso's clinic as well.

In chapter five, which was about headaches with more serious consequences, I really felt the information here would have been far better laid out. For example, having the possible symptoms of these more serious conditions, and information about them, which would make it an easy reference chapter compared to (again) very piecemeal way of having to look through all of the questions and answers.

Chapter seven which was focussed on successfully managing your condition and how to best help yourself was, I think, one of the most useful chapters in the book.  The descriptions of thresholds and managing thresholds is exactly what I have had described to me at York hospital and I found that way of thinking a revolution with regards to managing my lifestyle - and I'm really pleased it has been described in the book.  Considering that I have been given several self-printed leaflets at the clinic, I'm surprised that I was never given a leaflet showing the threshold diagrams on pages 84 & 86.  The information about the glycaemic index on pages 95 and 96 was very useful and I was surprised that I have never been told about this at York hospital.

The information about complementary therapies in chapter eight was certainly backed up by the actions taken at York hospital as they referred me to NHS provided specialist headache acupuncture and a headache specialist clinical psychologist.

In chapter nine which is about who you can go to for help with headaches and migraines, the introduction mentioned a specialist nurse, which is of course how the York hospital clinic works.  I find this way of working very frustrating though as I would also like the opportunity to see Dr Fontebasso again as well, as good as Jill Murphy is I don't expect her to have the same level of understanding of things that Dr Fontebasso has.

Chapters eleven and twelve deal with acute and preventative treatments and when discussing various drugs, I very strongly feel that this information would be better presented if it was laid out in a clear and structured way - instead of the usual question and answer format.  The table of drug interactions on pages 180 and 181 was very helpful but I'm surprised again, that I haven't been given this information by York hospital.

In chapter twelve, Dr Fontebasso explains how preventatives should only be taken for three to twelve months to break a cycle, but I have been on propranalol for three years now so I'm surprised that I haven't been advised to come off it by now if this is her recommendation.

I was pleased to see that a whole chapter was dedicated to medication overuse headache (MOH) as I think this is very common among chronic migraine sufferers and it's something which GPs don't seem to have much understanding of.  I had MOH when I had my first visit to the clinic at York hospital and since then I have been limited by them to only six medication days per rolling month.  This has been very difficult to stick to but I have stuck to it having experienced MOH I don't want to go through that again.

I found chapter fifteen about women and hormones particularly interesting because I know people are usually surprised when I say that I have been put on the pill to help with my migraines.  Whilst I was out of work last year, my migraines formed a definite pattern of only happening at menstruation and ovulation so I was put on a low oestrogen pill which I tricycle, which means I take three packets back-to-back before having the one week break.  I was told this was to level out my oestrogen levels so that I wouldn't have the peaks and troughs of oestrogen which seemed to be the main cause for my migraines at that time.  If I had migraine with aura then I never would have had this recommended to me due to the increased risk of stroke but since I don't have aura then I've been perfectly happy with this as a preventative treatment.   I was very surprised therefore, to not read about this anywhere in this chapter and I wonder if this is a treatment they have started to recommend since the book was written about seven years ago.The charts which were shown in this chapter are very similar to the charts I was given by York hospital to fill in but those also included what times headaches started and stopped etc, as well which was useful for conveying when a triptan had seemed to work but then it returned the next day.

The section I anticipated finding the most useful was within chapter fifteen and was about pregnancy.  As someone who is wanting to get pregnant but can't start trying because of her migraines this was of particular interest.  Most of the information here was about getting migraines whilst pregnant, to which the same answer was given time and again of only use paracetamol, something which I know doesn't come close to touching my migraines so that does fill me with dread.  Eventually the issue I wanted addressing came up, about trying to get pregnant when you are on preventatives.  The answer was what I feared it would be though, that you need to come off the preventatives before trying.  I hadn't had such a definitive answer as this from the York hospital specialist nurse though so I wonder if it is less clear-cut than this but Dr Fontebasso didn't want to put that in writing.

The book finished with a chapter about research which has become out of date quite quickly of course, so I'm surprised it was included.  Seeing botox becoming a more widespread treatment on the NHS now though, I found it interesting to read the quite sceptical was Dr Fontebasso was talking about in 2006.  The glossary at the end was very useful to anyone newly diagnosed who isn't used to reading the language used for migraines but the contact details section was again, out of date already with mentions of sending stamped addressed enveloped to some places.

Overall, I think the book had quite a but of useful information in it but it was so difficult to find that information and even harder to then go back and reference it again, that I think the book ended up losing most of its value because of this.  I won't be recommending this to any other sufferers I know and I didn't even find that it was wholly consistent with my experience as a patient of Dr Fontebasso.

Daisy is a 33 year-old sufferer of migraine without aura.  She's had migraines for 4 years and they have been chronic for most of that time.  She works full time at the University of York supporting the Timetabling system by managing the migraines with medication and lifestyle.  She's a proud geek and crafter who spends most of the time she's able to either playing board games or making crafty things.  She blogs about her migraines to help her friends and family understand her better

Thank you Daisy for such an honest and thoughtful review!

We will be meeting on Tuesday 8th October at 6pm (UK) and 1pm (USA). Everyone and anyone is welcome to join in. Just follow the instructions below:

1Click here to enter the chat room: MMBook Club (will open in a new window)
2. Enter Password: mmbookclub
3. Join in our incredible, life changing discussion! 
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