Transformed Migraine

I've seen a couple of posts/questions mentioning Transformed Migraine, so thought I'd relate my experiences as I'm having a rare clear-headed day today!

I started having migraines just after my 20th birthday and that's now 43 years ago. At first I had episodic migraines, lasting up to three days with a common pattern of left side pain, unbearable photo and phonophobia, and nausea moving on to vomiting and diarrhoea every 10 minutes, which lasted for almost precisely 12 hours each time. During the entire duration I couldn't even keep water down and then it would slowly recede and I would feel fine and full of energy until the next bout. I used to take two pink Migraleve when I felt one coming on, but mostly they happened anyway. I can't remember how often (except they were very often), and during my daughters' childhoods, one of their happiest memories is of being taken off to Pizzaland by their father as just the smell of food in the house made me vomit. I tried avoiding all the food "triggers" - none had any effect. I never had aura as a warning, they would just come on suddenly and agonisingly. They didn't seem to be hormonal, although while I was pregnant, they eased, but then came back with a vengeance. The only time I remember a respite from the fear of developing a migraine was when we used to go to France (towing a trailer-tent) for up to six weeks in the school summer holidays between 1988 and 1991. (My husband was a teacher but my headaches meant I was never able to develop my teaching career.) My GP joked that he was sorry he couldn't prescribe me holidays in the sun!

I think I started taking triptans at around the same time as the menopause when I was in my early 50s. They were the first treatment that had ever really worked for me. But the headaches changed around that time anyway and about eight years ago I was told by a neurologist I was referred to that I was likely to be suffering now from "transformed migraine". The attacks have certainly changed completely, so much so that if I didn't know that the only thing that would shift one is a triptan, I would doubt whether they actually are migraines. Now I can happily eat and drink throughout the pain - in fact I have breakfast biscuits beside my bed which I have with my morning cuppa most mornings. The pain itself is usually not so severe and I never vomit, though occasionally recently I have felt a little nauseous and muzzy-headed. I've had a lot of stress in my life over the last six years (cancer, family issues) so I think I've also had a fair number of stress headaches and sometimes it's hard to tell them apart, although after having GON jabs in February this year, a "genuine" migraine usually focuses there very quickly and then only Zolmitriptan stands a chance of working, usually after two hours of crashing out in a reclining chair. Occasionally a couple of paracetamol, sometimes plus a Sudafed will clear a "thick" head. I never take opiates, even codeine, but I take upwards of 18 Zomig every month (which I know is far too much, but what can you do when you have a busy life and are trying to function as well as possible?)

I suppose to sum up, I would have to say that I rarely feel completely clear-headed and when I do, it usually means there's a fairly severe migraine brewing, so the pleasure of feeling normal is somewhat tempered. Over the years I have tried all sorts of preventatives, none of which helped - and I've refused to try Topirimate after reading the list of side effects, most of which I already had, and I'm now waiting for a course of Botox on the NHS. Originally promised for September, I'm now told it'll be by end of November, but as my local hospital has a waiting list issue and is prioritising "life-threatening" illnesses, I don't hold out much hope.

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  • I had my first text book migraine (ie the full migraine works) at 19 but didn't realise it was one at the time. Started to get them again in my thirties. But looking back I had other episodes of illness as a teenager and in my twenties which I just put down to lethargy / bugs/ hangovers (!), but now I'm certain they were migraines as well. I was diagnosed at the age of 37 with migraine without headache, left the hospital and within an hour had another text book migraine with the headache!

    I've suffered from chronic pain in my face / shoulder for 8 years and realise that some of that head pain was actually migraine. I've had the same foggy-headed feeling for years and years, and it's not until I get a run of clear-headedness that I realise how awful it is.

    My conclusion is that for some people the migraines are a mixture of types and symptoms. I still don't know why I sometimes get the full works and sometimes don't, or why the botox sometimes works and sometimes doesn't. Or why, having had a few months of almost no pain / mild migraine symptoms it's all flared up again.

    I am trying to think that it's just how I am, I know I can muddle my way through it, and perhaps I'm over-analysing it too much. C'est la vie (until the next bad attack when I won't be feeling quite so philosophical).

  • My experience of migraine started from childhood carrying on through to where I'm at now menopause. My lead up to an attack includes extreme tiredness, yawning, irritability, increased urination, sensitivity to smell and sound and sugar and salt cravings. I too have thought a lot about hormonal triggers always had menstrual migraines and now they have escalated to 1-2 per week accompanied by increased hot flushes and night sweats with disturbed sleep. These attacks include a muzzy head days before and following I also have neck and shoulder tension and pain and feel this also plays a part.When i have massage a migraine will often follow the next day has anyone else experienced this ?

  • Yes I have experienced terrible migraine after a massage. Like the above posts, I've suffered these type of heads since my 20s, and now am 52. Sumatriptain worries me because it does get rid of the pain but ensures that I take it for 4 to 5 days, as the pain returns. My migraines/ headaches are usually non severe, but very debilitating. They are rhinal, side of head/face , around one eye .The only times I have been migraine free , have been on holidays, especially in the sun! I am wondering about wheat/ gluten allergies now, as the frequency has gone from once a month, to every two weeks over the last year or so? Anyone have any tips on controlling / avoiding the pain? I was diagnosed with MS in 2003, but apart from a limp, don't have many problems working and being a Mum to 5 kids! The bane of my life has actually been the head pain , more than any other aspect. All suggestions would be most welcome!

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