I have suffered from them for 6 years now and luckily only get 2/3 a year but it can take a few weeks to recover, and it has also caused a mini stroke once which was very scary.
My main fear is that it may lead to a full blown stroke as it did with my mum when she was 39.
i havent been able to find much info and my neurologist has basically said its a case of deal with it when i have 1 which i dont think is much help.I have been in contact with the Migraine Assoc but they have very little on the type of migraine as it isnt very common.
I know it is genetic as both Mum and i have been tested .
Can anyone shine anymore light on it.
5 Replies
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hopalongkp,
I can appreciate the frustration of trying to find out information about a rare condition. My eye condition is 1 in 100 000 births and when I first went online there were only a handful of websites about it.
I don't know anything about hemiplegic migraines but I had a search on google and found this support group on msn. It looks like it is Australian and it has almost 40 members so it might be worth a try.
I hope you find some support and useful information. I wonder if contact a family would have any information since it is genetic? It might be worth giving them a call even if there is nothing on their website as I know they keep a list of contacts on various rare conditions.
Hemiplegic migraine is a term used to describe the migraine syndrome that is associated with a weakness or sensory loss of the limbs on one side of the body. The headache usually precedes the weakness by a day or more. The limbs gradually return to normal over several days.
Often there is a family history of this type of migraine, usually with an autosomal dominant inheritance.
It is always necessary to exclude another possible underlying cause for the hemiplegia such as an angioma.
It is a rare form of migraine.
Trigger factors are reported commonly but there is little consistency between patients.
Dietary triggers affect about 20% of people (1).
Most attacks have no obvious trigger, and some triggers that are identified are unavoidable.
Trigger factors include:
* bright lights
* certain foods:
o alcoholic drinks
o tyramine containing foodstuffs (cheese, citrus fruits, chocolate)
o food may be considered a trigger when:
1. migraine onset occurs within 6 hours of consumption
2. the effect is reproducible
3. withdrawal leads to improvement
* extremes of weather (e.g. very hot or cold, strong winds)
* long distance travel
* loud noise
* missing meals
* strenuous unaccustomed exercise
* too much or too little sleep
* emotional stress and anxiety
Once a diagnosis of migraine has been made the patient should be offered explanation:
* migraine is an inherited tendency to headache which can be treated but not cured
* with the exception of women who smoke and take the oral contraceptive pill there is no significant association with serious disease
* treatment takes time
The management of migraine can be divided into:
* general measures
* management of the acute attack of migraine
* prevention of migraine
Hope this helps Hopalong, let me know if you'd like me to find a bit more.
Cathy
Thanks Cathbear
As of yet i havent worked out what triggers mine which is a nuisance .
I have been put on medication which is usually used for high BP but has been shown to help this type of migraine, i was hoping for some more info on treatments orthodox or/and alternative and just anything that people might know.
Obvioulsy having had one mini-stroke my fears are for a further or full blown stroke , i know that no-one can tell me the odds of it happening , was just wondering about others knowlegde/experiences.
Beth- thanks for your support i will check out the link and let you know how it goes. whta is contact a family ? i dont know anything about it.
As for the genetic part , mum found out that one of her aunts(now deceased) also suffered from these types of migraine. Im just praying that none of my kids follow me.
I used to suffer from these ""hemiplegic"" migraines. I had my first one aged 7 and by the age of 11 was having up to 2 a week. I was given a low dose of propanolol (a beta blocker) for a few months which fortunately really helped. I very rarely get migraines now and even if I do, it is not normally the sort with hemiplegia. My Mum and Nan also suffered from these sort of migraines however ""grew out"" of them.
Hopalongkp,
Contact a family are an organisation who support families of disabled children. they hold a database of information about rare genetic conditions and support groups available. They have regional offices and a national office. I guess it would be worth you ringing the national office to see what information they have. I had a quick look on their directory of conditions and hemiplegic migraine isn't listed but I know that they do keep information on conditions which are rarer including people who haven't got a diagnosis, just a list of symptoms. People often get in touch and leave their details to be contacted by other people so its definately worth a try. I know they are primarily aimed at childhood disorders but I'm guessing that hemiplegic migraine could in theory affect someone of any age if it is genetic.
I've had good contact with them about my eye conditions, getting othe contact details for the support group I used to run on their database. I've also had meetings with the regional team at work and they provide really good activities for disabled children and their families.
At the moment the only other organisation I can think of that it might be worth trying is GIG, the genetic interest group. Their address is gig.org.uk
Its so difficult to highlight triggers isn't it? I had a migraine a few weeks ago and there were a number of things that could have caused it but nothing I tried seemed to alieviate it (usually I can tell by what works when I tret it) so I just had to sleep it off.
Fingers crossed you can find some helpful information.
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