Living with someone who has hemiplegic migraine

Good morning all,

I have only just joined this website this morning so hello to you all. My husband was diagnosed with hemiplegic migraine nearly three years ago (I am pretty sure it is sporadic and not familial). I am very interested to hear from anyone who lives with a hemiplegic migraine sufferer or is a sufferer themselves. My situation is that my husband has completely changed since being diagnosed with this condition and at times I find him very difficult to live with. I have read lots of websites about the condition and most of them state that symptoms presented with an attack may last hours or days. My husband is permanently presenting the symptoms and the days on which he "feels slightly normal" are very, very rare. Can anyone give me any advice or even their own experiences with this condition. He is on medication for the migraine but the last time he saw his consultant or had his medication reviewed was in May 2011. Is this normal.

Any help or advice would be very gratefully received as I just don't know what to do next.

Thank you

Welcome to the forums.

Although I've not been given a diagnosis of Hemiplegic migraines (just "complex" or "atypical") I often have the symptoms seen with HM sufferers. My wife frequently has to struggle to cope with living with me. Probably the most difficult thing for her is that I seem to become a different person at times where neither of us is able to communicate with each other. At such times I'm not aware of the difficulty and often don't realise that I have practically stopped communicating verbally. We are now both taking regular counselling which has been a help to both of us.

I understand what your husband means by "nearly normal". Until a few months ago the number of days I felt "normal" in a month could be counted on one hand. When one is in pain, it is usually possible for most other people to understand and make adjustments when around a sufferer. But others seem less tolerant of such things as misunderstanding language, memory loss, de-realisation, depersonalisation or confusion etc. In my own case I sometimes go into some kind of fugue state and can go "walk about" not knowing who I am or where I am.

Finding the right medication is can be a long and drawn out experiment, with no guarantee of success. I wonder if the medication he is on is part of the problem as you mentioned he has changed since the diagnosis. Many medications given for treating migraines can have some nasty side effects. I have been prescribed medications that have caused me to have symptoms such as being aggressive and violent, constantly confused, poor coordination, slurred speech, mood changes, irrational and too many more to mention here. Eighteen months between reviews when his condition is not under control seems to be way to long to me. I would say 6 months tops, and more frequently when there's a change of medication or any change of symptoms.

I've had migraines for around 50 years and been chronic for about 15 years. In that time I have come to the realisation that there are no real "experts" in the field migraine treatment. Even the the best specialists seem to be working in the dark far too often when a migraineur isn't exactly a textbook case.

Please try to find a readily accessible migraine specialist and become an active participant in your husband's treatment. Often migraineurs have problem being an advocate for themselves simply because of their condition. I am very grateful to my wife who has often fought on my behalf when I wasn't able to. And regardless of all the difficulties and tribulations I have caused her over recent decades, she has been my rock. I really don't know where I would be now if it wasn't for her.

So far we haven't found the right medication to control my migraines, but together my wife and I are learning how to make the best of the situation. Please, whatever the two of you do, don't just accept the current situation. With the right help, your situation can become more bearable. Unfortunately I don't know where you are located (I'm in NZ), so can't offer any suggestions on where to go for support. Perhaps if you could let us know where you are located, one of the other forum members might be able to point you in the right direction.

I wish you well for the future.

Hi Moneypenny

I am sorry to read your husband has this rare and horrid mig type - I will find you some stuff to read in a min.

However, a meds review that long is not right - he needs to be seen at least every 6 mths - he needs to keep a mig diary and if the meds heis given are not making a difference then they need to be changed. What meds is he on now? Remember some of them have side effects which are worse that the migs - re personality...

Where are you based - maybe we can suggest a new nero for you to see?

HM does change your life - BUT it is manageable - it just takes time to get your migraine management plan sorted and this is where you can help. Often you are in such a state you cannot think straight - you cannot even think of the right questions to ask, let alone listen and understand the answer.... add to this pain and aura 24/7 days if not weeks on end and yep you get frustrated and cross - this is NOT him it is part of the illness.

So practical steps - would be to look for a new doc - newd meds - keep a diary... then look at lift style and make changes - Triggers are a big thing here - the more you can find and get rid of the better. he needs to learn to stop - and not push thing - this is a hard lesson to learn... and a hard one for those around them. If he was an outgoing, active, completer finisher - then t will be harder still.

I will post you some links below - have a read and then come back with questions.

This should help you understand the stages - he will I guess have all of them - and do not under estimate teh auara stage in HM it can be worse that the pain stage

http://migrainetalkblog.wordpress.com/about/the-5-possible-stages-of-a-migraine-attack/

This will give you the heads up on aura - it is not just about seeing stuff - get him to have a read too and tick off anything he has experienced - it might explain some of the issues you note above

http://migrainetalkblog.wordpress.com/about/types-of-aura/

Triggers - this is a big part of the management plan - triggers are not just food - its like his senses are or high alert - he will hear stuff louder, see light brighter, smell things stronger etc

http://migrainetalkblog.wordpress.com/about/types-of-triggers/

http://migrainetalkblog.wordpress.com/2012/06/09/migraine-awareness-month-8-let-there-be-light/


This may help you understand the meds which are out there to help.

http://migrainetalkblog.wordpress.com/about/migraine-management-medications-treatments/

The other point here is not to under estimate the alternative stuff too - anything which helps you relax and turn off the brain will help.

xx

I am not married. But my father was and I am FHM. When we were both in the same house and having episodes I am sure there were days my mother and brother (who are always in perfect health) wished they could move us to the ceilar and be done with us. Especially with us falling and blindly bumping around the house. My father was an engineer who tinited our windows, and other "helpful" things for he and I but made things harder for her.
At that time, websites like this where not really available for any of us. He was never as bad off as I am.But she and I have both found help, just talking here, with the RIGHT doctors, and to each other. It just takes time to get used to changes in a person when you can't fix the problem, but I stress...talking always helps.