Essentially, it is a place where you can log things. You might be asking yourself, ‘What kind of things?’. Well, really anything relating to how migraine affects your life.
So, you can write about anything from how migraine impacts your family life to the side effects of certain drugs to how it makes you feel (whether emotionally or physically).
Positive blogs are always good to hear, so sharing your success stories with those who are suffering at the moment can be of great value.
One of the best ways to foster a sense of community is to post a testimonial blog: when were you diagnosed and what has your journey been like since that point?
Blogs can be as short as you like so don’t feel you need loads of content. Simply post what’s on your mind.
That’s it. Now go blog so we can read and comment!
Rebecca
National Migraine Centre
Written by
Charlotte_NMC
Partner
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Hi, I have been a migraine sufferer for over thirty years. Midly at first, then getting much worse in my thirties and forties. I am now over 50 and still do suffer with them but have learnt to manage as far as possible so thought I may share my treatment in the event it helps one other person out there suffer less. I have low levels of anti-cardiolipin antibodies also and think this is connected but after MRI showed a lot of lesions etc and possible m.s. I have convinced my doctor to give me plavix this works quite well, I also have inderal twice a day and if I still get migraine I take zomig, which is a triptan that appears stronger than imigran. I also am very careful to get the same, right amount of sleep, always eat well and avoid drinking alcohol. Hope this helps, Letitia
I started getting migraine when I was expecting my son, who is now 23. Over the years it became more debilitating and by the time he started school it was out of control. I've been on migraleve, beta blockers, imigran, zomig and am now on Maxalt Melt and diclofenac for an attack. I've also been on so many different preventatives - one of which made me put on 2 stone in weight - which I've never managed to lose. I'm now taking an anti epileptic - Topirimate as a preventative and an anti nausea med - domperidone, which makes the Maxalt and oral painkillers work better. I still get attacks where I go numb down one side - hemiplegia - which made the GP take me off my HRT so I've had to go cold turkey on that and it's been HELL! The only upside is that the clonidine they gave me for the flushes also helps with migraine and the attacks seem to have been less frequent but also less violent so the Maxalt has worked better since I've been on it.
My biggest problem though has been the so called 'Migraine Clinic' at the hospital I was referred to. I won't name the hospital but they increased the dosage of the Topiramate that the GP had prescribed and then discharged me without monitoring what it was doing to me. They had ramped it up so high it would have knocked out a bull elephant - I'm only 4'10"! Needless to say when I turned up at the GP in such a state and he looked at the dosage and asked when I was going back for a review, he was disgusted to find I was not going back. We've got it back down to a level that works for me and I can cope with now. Their only redeeming action was to order a CT scan, which came back clear. I've not had an MRI. Would that show anything new? Should I ask for one?
Anyway, I'm sticking with my GP for treatment as he's been far more help than the alleged clinic were (apart from taking away my HRT - ratbag!) and if anyone thinks that my meds - Topitimate and clonidine as a preventitive, Domperidone as an anti nausea and Maxalt Melt for an attack in conjuntion with a diclofenac suppository (not nice but the only effective way to get it into your bloodstream) will work for them - speak to your doc.
Somehow, I've managed to hold down a full time job through all of this and bring up 2 kids and even reassure my daughter, who also sufferes with migraine, that hers won't necessarily get as bad as mine have.
Hi micks_missus, it is so good to hear such positive experience from going to your GP, despite the poor treatment at the hospital. We at the National Migraine Centre believe that 90% of headache care should happen in primary care and it sounds as if your GP is doing a good job to achieve this!
We welcome anyone who doesn't have such an experienced GP on headache to come to see our specialists at National Migraine Centre.
Hi there I am a newbie so please be gentle with me!!! =D I was "struck down" with migraine attacks exactly 2yrs ago & no-one can find out why or what triggered them......I'm talking 2/3 a week plus daily headaches........I can remember having about 3 or 4 in my whole life before April 2010 but 2 of those wre triggered by the paint we were using in school for a project!! No-one can understand what has caused it to suddenly hit me with a bang.....I have had ct scans/blood tests/diet diaries/umpteen different meds which we're still working our way through the list again/gynae clinics for hormone tests/I even went through receipts in my house to see when I purchased my couch & carpets in case they were the cause(maybe chemical gasses???!!).....I have been taken off some painkillers as the neuro's were worried that I was experiencing Medication Over-use Headaches but having been off them for 6months now & still have the daily headaches..........The only meds I'm on just now are topirimate, verapamil(3month trial),sumatriptan inj.x2 a week....my GP has been great though my local community hospital had made things worse at one point by piling one med on top of another on top of another instead of allowing one med a chance to see if it'd work then removing it then trying another.....my neuro doc is pretty good she understands that it is crippeling my whole life & is trying everything she can even Occipital Nerve Blocks.....I have been off work for the last 6months(due to meds trials etc) but I have begged my GP to allow me back on a slow introductory basis though I'm not sure how this will work but as long as am not sitting at home thinking on it then hopefully it may not be as bad as I'm worrying about!!! =) My query was that my neuro doc has got me on triptan inj.x2 per week only & I get 3 sometimes even 4 migraines a week.....now depending when I have taken an inj. I can use another later on in the day should another attack occur therefore using up my allowance in one day never mind a week!!!......how do other people manage with this restriction??? cause right now all I seem to do is hide in a dark/cool room & sleep most of the time =( I still have reviews by my GP/neuro but I'm not sure where else they can go with me on this as we seem to be reaching the end of the road =( any ideas/thoughts/hints or tips would be gratefully received!!!! =D
Hi Jan, I am sorry to hear that you are having such a tough time of it. As you mentioned it is important not to get into the mode of medication overuse but if it is the only way to be able to function sometimes that gets difficult. Did you come off all painkillers when you went 'cold turkey'?
HI there thanks for getting back to me....yes I did the dreaded cold turkey but it was nowhere near as bad as I expected considering the amount of meds I was on.....I have no painkillers at all now.....well except sumatriptan that is =) The amount I was having to take to get by on a daily basis (work/family) was going to melt my liver eventually.....I had 8-10 cocodamol 30/500mg (I know 10 was too much but that's because 8 wasn't working anymore!) I also had 50mg tramadolx2 when required which I ended up using 3x2 per day I also had naproxen/declofenac that on top of all the other meds they were trying me on I was near flying!!!! =D lol But cutting that didn't stop the daily headaches but there's still no way I'm going back on all that lot again!!!! =D I just wondered how other people cope with the extreme limited use of triptans?? What other techniques apart from cold/dark room....(can't do that at work - homecare - supposed to look after THEM not the other way around!)....My other problem is I get no warning signs like auras etc so it's like BANG headache/sickness/nausea......if I'm already at my limit of triptans what else can I do??? =(
Like you mentioned non-medication approaches such as Nerve Block injections and Botox could help you. We have some patients who have responded excellently but its only suitable for chronic sufferers such as yourself.
I did have the Occiptal Nerve Block over a month ago but it didn't make any difference =( I was a bit gutted over that one cause I had stopped myself getting too excited about meds/treatments working as it's hard to pick myself back up when they fail but I was soooooo sure the nerve block was going to be my answer =( I have asked about botox but it's not available on the NHS in my area apparently (nhs highland) and I can't afford to pay privately to have it done........so I'm kind of stuck logistically as well as medically =( I'm not normally glass half empty but lately I have been =(
Hi there
I have a variety of migraines: basilar/aura/non aura/vestibular.
My life of migraine:
First started feeling dizzy in my final year at primary school at 11 years.
First true rotational vertigo attack at 12 years. First aura migraine at 16 years.
Vertigo used to be the main problem, it would come in cycles of every 6 months or so ( I believe they call this cyclical migraine), then the attacks became less frequent in my late 20s and 30s however I have always had regular dizzy spells.
I did get severe migraines, but generally they were not always that frequent, but my life has mostly been dominated by an almost permanent background headache. From my mid 30s I began to get chronic spells of migraine which would mostly resolve after a month or so and go back to the usual pattern.
That has repeated with some good periods in between up till now, my early 40s. Migraines just got a lot more difficult from my mid 30s and continue to do so.
Last September I had an acute vertigo attack, by the end of the month I was in a chronic migraine phase and I have been since, along with frequent vertigo and dizziness, though the vertigo has improved a lot. After 32 years I finally had my vertigo confirmed, last month, as vestibular migraine. It was no surprise to me but a relief to finally be diagnosed. I've also found out that all my sinus/hayfever problems that I thought I had, seem also to be migraine induced and all the accidents I have had, such as falling down stairs, walking into things, hitting my head and frequently breaking items are probably due to episodic ataxia as part of basilar migraine . I have also been experiencing 'absences'. I thought I had developed silent epilepsy.
I lost my job in March as I am not medically fit to work and don't know when I will be, at least for now. I am lucky if I have 1-2 good/better days a week. I have found my whole worklife difficult and have lost jobs due to migraines. Now I can't work, for now at least. I find I am scared to make any plans at all in my home life, I'm prone to cancelling at the last minute and simply can't live a normal life at all. One of the worst parts, apart from the migraine, is the social stigma when you become a chronic migraineur, it's horrible and adds to you becoming so isolated.
I am a 20 year old woman, and I have suffered from severe migraines since early childhood. I am lucky that my migraines are relatively short. They always last around 9 hours. I've heard of people who sometimes have a migraine for several days, I can't imagine that horror!! However short, mine are very extreme. During my migraines I experience visual disturbances, nausea, paralyzed limbs, and trouble with speech. I suffer from a kidney disease, which means I cannot take any medication what so ever for the migraines, I just have to sleep through them if I can.
I have however come to learn some tricks that don't involve medicine, so this is for people who either would like to stay away from medication or, like me, for some reason can't take it.
The first is the most weird one - some of you might be appalled but it is however the one I've found most effective. Orgasms! I've had migraines disappear, I'm not even kidding.
Secondly, one you've probably heard often before is routine. When I follow a strict day routine I rarely get any migraines at all. I go to bed at a reasonable time, and always at the same time. I wake up at 7am, and I don't let myself sleep any longer. I eat at specific times as well.
Drink tons of water - migraines are not so much different from hangovers. Hangovers are a result from dehydration. So I always try to drink a ton of water every single day - 2 liters is my goal (like 6 glasses throughout the day).
I also try to avoid screens - I haven't really experienced a link between looking at screens and migraines, they seem to be as often or seldom with or without tv screens and such. However many doctors have found that there is a link between it .. and I just don't wanna take any chances haha!
My migraines started when I was at primary school, probably at the onset of puberty, the GP initially prescribed paracetamol syrup, which I would invariably vomit back up, during the two-day long incoherent blackouts. Totally dependant on family back then, I lacked the ability to articulate to any medical professional the sheer range of symptoms. A family member thought he was helping, by giving me his prescription back-pain medication. It was co-dydramol, I was 10, it knocked me out.
During adolescence, I was prescribed a wide range of drugs, Stemetil, Prochlorperazine, Proprananol are the ones I can remember. It wasn't until a girl in my Geography class helped me out of school, and across the road, to the GP's surgery, DURING a migraine, where he could see the degree of impairment, that the scans and such started.
That was back in the late 1980's, and I was referred for various scans, a slight abnormality in some brain-wave or other was noted, and my GP started to refer to the migraines as 'seizures'. Didn't stop him prescribing the combined contraceptive pill, when I was 16, mind you.
The migraines continued, stealing two-day periods of my life, with no apparent obvious trigger, until I found myself pregnant at the age of 20, most likely having vomited up my contraceptive pills during a migraine. The lack of understanding of migraine has always been a sore point for me, I remember my husband once saying "Don't be so STUPID, how can a headache mean you can't speak?" and my Father-in-law, well-meaning fool that he is, once saying "Are you on drugs, lass, have you taken something?" A migraine is very, very different to a 'headache'.
The migraines would start with a visual aura, which would make the peripheral vision untrustworthy, somewhere between looking through a glass of petrol-spill water, and the after-image of one of those plasma-ball things. The peripheral vision would close down, leaving me only able to see what was directly in front of me. The pins and needles would come next, fingers, toes, and face tingling, and then numb. Confusion, brain-fog confusion and clumsiness, next, even though it had probably happened a thousand times. The visual disturbance, and the numbness meant I would either knock over, or completely miss anything I tried to pick up or put down, as the vertigo kicked in, and everything was woozy-spinning-disorienting. The pain would come around the same time as the porridge-mouth, the aphasia, where I KNEW what I wanted to say, but my brain wouldn't let my mouth have the idea. During one of the early-marriage migraines, I was trying to tell the Father-in-law that the brain scans had been inconclusive, but what came out was "Pictures, that thing in my head, nothing there.", garbled, slurring, incoherent, no wonder he thought I was drunk.
Over time, the vomiting with the migraines stopped, and then, strangely, so did the pain. I was still utterly useless, vertigo, porridge-mouth, and confusion, but it didn't hurt.
I stopped using hormonal contraception, as I couldn't rule out that even the mini-pill might be a factor, but the weird, 'silent' migraines just kept coming, again, no obvious trigger, and no sort of regularity to pin down any causal factor. In the autumn of 2012, I had a sustained period of almost-migraines, and sought advice from my GP. Sumatriptan, initially 50mg, then 100mg tablets, I had 23 migraine onsets in a period of about two months- likely rebound from the Triptans?
In February of this year, I had a Subarachnoid Haemorrhage as a result of a ruptured aneurysm. The husband, who doesn't-believe-in-migraine, very helpfully told me that I wouldn't have any more, after the draining/coiling surgeries, but, that if I did, he would take me to the hospital, even if it meant strapping me to the roof-rack of his car. Supportive, isn't he?
There you go, I haven't had a full-blown migraine since the surgery, but I've had almost five months of visual disturbance, headaches, and vertigo... which I'm not telling the husband about, in case he carries out his invasive, borderline abusive threat to take me to the hospital by force.
It may be written more eloquently on my blog, somewhere. gaiatheorist on tumblr.
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this works quite well, I also have inderal twice a day and if I still get migraine I take zomig, which is a triptan that appears stronger than imigran. I also am very careful to get the same, right amount of sleep, always eat well and avoid drinking alcohol. Hope this helps, Letitia
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