hemiplegic migraine
Posted , 163 users are following.
i have recently been diagnosed with hemiplegic migraines. as its such a rare condition alot of doctors dont know anything about it , or how to treat this debilitating condition. i am typing this because i hope that it may help someone out there who is going through this and the doctors dont seem to know what is going on with them.
my symptoms tend to start two days out from an attack. i usually get a nasty ache at the back of my head , its tends to be dull and very painful, a score of 7-8 is normal. my head will feel like a block of lead, and i become very tired and listless. i tend to do alot of sleeping as well. on the second day my balance starts to go and i stumble about and and i notice my speech gets slightly slirred.
the attack usually induces bells palsey to the lhs of my face, my left eye droops as does my mouth. i have swollowing difficulties and loose sensation down the lhs from face through all my limbs. i get paralysis on the lhs in my limbs. i usually cant pass urine so i have to be catheritised, and am nil by mouth. the attacks seem to get worse each time as well , the last time i was taken to hospital in a semi concious state . i usually start to come out of it typically 3 days after the attack and my left arm is the first to fully recover , while my balance and left leg can take 2-3 weeks to come right . that depends on the severity of the attack . i find that i never make a full recovery either , so i am left with short term memory loss and learning difficulties , and am on a soft food diet only. i can only work parttime now as well, my body doesnt like full time hours and i got very washed out. i find 4-5 hours is maximum for me per day any longer and i hit a wall and struggle to go on. the nurologist said that half my brain goes to sleep which causes this. its not curable and they can only try to prevent reoccurance or limit the effects.
ive tried propanalol and topomax , but they didnt help at all , so im currently on amitriptaline. the neurologist started a weekly dose 5 weeks ago after an attack beginning with 10mg and increasing it over 5 weeks to 50mg. i had an attack during this time and am now on 75mg.
with not much being known about these debilitating migraines im surprised that a nurologist or gp hasnt worked with patients who suffer these migraines and written something for the drs to read as a guide to diagnosis or help prevent them. if any doctor wants to do so them im willing to help with this , to aid anyone else who suffers this rare debilitating migraine.
15 likes, 418 replies
purple19m
Posted
I think starting a diary is a great idea wish I had done it ages ago I think it will help I've started one online.
smurphy
Posted
stringman,
ive had the same experience of being discharged and cleared fit to drive and work even though i couldnt walk unaided and even with aids would fall after less than 10 steps
re what questions, maybe any white spots on scans? (they can explain, i think of them as air holes to let my brain breathe), one medication choice over anohter, has anything shown in any test, are any treatments not suitable for you due to maybe other health conditions
would recommend a look at the severe headache expert website and he has a guide to self help for headaches before you see a neurologist
also this a link to help your gp with starting you on treatment as its a guideline to what need to look out for and when to refer and how
http://www.severe-headache-expert.com/support-files/headache-advice-for-family-doctors.pdf
https://www.migrainetrust.org/ - this might help you to figure out what you want to ask
Emma.
i have a m.e and a fibromyalgia diagnosis as well as hm - my m.e started in 2007 and my fibromyalgia was diagnoised in 2010 -
emma18197
Posted
you say you've been diagnosed with fibromyalgia - I can manage the migraine ok - like you I've been having them since I was a teenager and I don't seem to have them as severe or prolonged as some other people who have posted here. Even the diagnoses of HM a couple of years ago I can handle and don't medicate differently. Fibromyalgia though - my doctor has diagnosed Gabapentin for me (an anti epileptic). I had an awful experience with a nerve pain drug after I was hospitalized and diagnosed with HM (can't remember what the drug was called - a depression or anti psychotic drug)
It has made me very wary of anything not over the counter - anything I've read on the internet about Gabapentin hasn't reassured.
I've a big overseas project launch coming up this week and have just avoided the whole medication thing in case it interferes and I'm caught out abroad. The tiredness and pain is very hard to deal with though. Any advice?
Emma
smurphy
Posted
re medication I cant really advise anything as everyone is so different and with fibro what works for one may be awful for another its totally trial and error, are you getting any support with your fibro? real life or virtual - fibromyaligia uk forum is very good and there is a thread in the coping section about what all has helped others
with regards to pain some people find heat helps them, thermacare head pads or cura pads (from £1 shop( can soothe pain a bit, others prefer colder sensations so biofreeze or similar
hydrate as well as possible as will help migraine prevention as well, keep a pair of dark glasses handy in case lights are overwhelming,
would also recommend to have a look at about com fibromyalgia pages there are very good
bring whatever you need in a small purse to keep with you, do you have a braclet of anything like that to indicate that you have medical conditions - I carry a list of up to date meds and my diagnosis etc just in case I was to collapse either due to side effects of fibro or from a bad hm attack so it helps for emergency personall to have info to help them in the event you cant communicate properly
ive had problems with gabapentin but preserving, think its a fibro thing as drug sensitivies can go weird for us
sorry this is a speedly reply, hope it helps
joanne90460
Posted
stringman
Posted
I saw the consultant last week and he has prescribed gabapentin, starting at 100mg tds increasing to 300mg tds.
In the past I have had amytripiline, propanalol. all these were said to cause drowsiness and didn't affect me at all. but I am knocked for 6 with the gabapentin. I feel shattered and spaced out and although I don't have the right eye pain or right eye headache ( behind the right eye if that makes sense) buti have had a constant headache at the side and back of my head.
I have only been taking them 2 days so don't know if this is an initial side effect that will calm down or if this is how its going to be. if that's the case I need to start looking at alternatives.
Any Advice?
Andy
Lissybabe stringman
Posted
debbie88581
Posted
seasidespinner
Posted
lisa221076
Posted
I havent been diagnosed with hemiplgic migraines, but after reading information about them on the migraine trust website and the comments on this forum, i feel this is what is wrong with me. But there are a few things that are different for me and was wondering if any of you have the same issues.
My headache is constantly there it started in june last year and has not gone away since, there are days when its not as severe but the headache is always there. In October i was admitted into the hospital after my gp grew concerned i was having a stroke, my left side was numb and weak, my vision was blurred with lights(my vision has been like that since the start of the headaches) my words were slurred and i couldnt get my hands to co operate with what the doctors were asking me to do, it was like the signal from my brain just wouldnt let me do what i was been asked. I was told that it was a migraine and the feeling would come back. my left side is still numb and considerably weaker than my right side, this hasnt gone away since october. I have had 2 mri scans and a ct scan all come back clear
and i am due to have a lumbar puncher and to see the stroke doctors next week.
My nurologist as not been very helpful until he sent me for vision field tests and i failed them badly in both eyes. he now realises that im not making up my vision is affected constantly. The drugs i have taken up to date are migraleave at first, submitamol, naproxen, amatriptayline, he then put me on toperimate, which had little effect either, i have now been put on a drug called nortriptayline which certainly isnt working. Since coming off the toperimate my head as been worse than it has for a while, so i feel the toprimate have done something to stop the big attacks, but not the constant headache.
I am due to see my gp on wednesday and will be discussing with her the chance i could be suffering from this migraine. sorry for waffling on, but i have been so frightened and worried. i am so happy i have found this forum and hopefully to find some answers and hopefully some peace of mind and to try to find a treatment which can help me with my normal every day life, but reading what has been wrote on here, im not sure that will happen
Lisa
Lissybabe lisa221076
Posted
stringman
Posted
Whilst I appreciate how scary all this is and, judging by your posts you are in the states, I really think you need to get professional advice. I am sure that the money side of things is hugely important but this is your life you are talking about. You say that you are suffering from this type of headache for a few weeks yet you haven't been diagnosed by a specialist, so how do you know? I am not being aggressive but trying to highlight the dangers of internet diagnosis. I spent a year thinking I had had TIA (mini strokes) then thinking it was a stroke mimic, and it was only after diagnosis by a specialist that I was diagnosed with HM. I was on every forum going almost cherry picking the illness.
You are petrified of other attacks yet this is likely to cause another attack ( I can stress myself into migraines almost at will)
YOu have had CT and MRI but how soon after the attack? A mini stroke will not show up on a CT or MRI after 36 hours so that's more worry to add to the mix.
Not being morbid bu how do you know it wasn't a TIA? this forum may well "fit" your symptons, but go on a stroke forum and you will also be able to "fit" your symptons there.
What you really need is to arm yourself with information and then see a specialist. Yes it will cost, yes it will be difficult but at least you will KNOW whats wrong with you.
I spent a year thinking every headache would lead to a stroke. At least now I know a headache will lead to a migraine and a crap day or so but it wont be life threatening.
Sorry if you think I am being harsh its just that I am a newcomer on here and I have had people asking me what drugs they should be taking. We are all different and all need different treatment.
Best of luck
smurphy
Posted
stringman - how you getting alongside with gabapentin now? any better or worse?
Lisa, wishing you good luck with your drs appt and let us know how you get on?
stringman
Posted
I am on 200mg tds and it doesn't seem to make a difference, next week I will be up to 300mg tds and then reduce the propanalol and what difference that makes.
if not there are different drugs I can try
smurphy
Posted
hopefully this will go well for you, keep us up to date please