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hemiplegic AND basilar migraines. . .if that's possible?

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Posted 9/26/2009 2:21 PM (GMT 0)
Hi everyone! I am so happy to have found this site and to not be alone, I really have no words. I am just being diagnosed and right now we are just with "migraine with aura."

Here is the my story. . .

Vertigo spells on and off 3 years.
Sudden hearing loss, hearing aids now for two years, hearing still dropping.
Loss of balance constantly
Middle of the night. Can't move arms/legs or speak for hours. Happened only one time.
Bad migraines start with shaking all over, pain in back of head, light/sound/motion sensitivity/nausea, then weakness. Couldn't lift arm or legs, then couldn't walk or hold weight on and off for two months until put on meds for "depression" that accidently prevented my worst migraines when they doctors gave up on figuring out what was wrong with me. I wasn't diagnosed until two and a half years later when I figured it out myself and found a new neurologist to confirm it!

So here are my questions:

does anyone get the shaking?
does anyone have loss of control on BOTH sides?
will prevention meds for migraines stop my hearing loss progression?

thanks and be well : )
Posted 9/26/2009 3:55 PM (GMT 0)
Welcome :)

I don't have much experience with many of your symptoms but I do have a few thoughts. Regarding the subject of your post (whether hemiplegic and basilar migraines can coexist), according to the IHS both types of hemiplegic migraine (familial and sporadic) "very often [have] basilar-type symptoms in addition to the typical aura symptoms." Apparently basilar symptoms accompany FHM (familial hemiplegic migraine) about 60% of the time. In that case, however, basilar-type migraine is categorized as FHM or SHM (sporadic) if motor weakness occurs. So the combination of hemiplegic migraine and basilar-type migraine symptoms is not uncommon.

More importantly, though, your symptoms are not consistent with the diagnostic criteria for hemiplegic migraine (but there are exceptions). The two main reasons for this are:

1) Hemiplegic migraine is typically accompanied by hemiparesis, impaired motor control of one arm and one leg on one side of the body. But you report tetraplegia, full loss of motor control of all four limbs. From my limited knowledge of this topic this symptom seems to rule out hemiplegic migraine.

2) Sensory or motor symptoms of HM are "fully reversible" and your hearing loss is not. However, your hearing loss may be unrelated to your other symptoms or maybe caused by some underlying condition that is causing them separately.

Now with HM having imaging studies (MRI, CT, etc) is very important. Even if you don't have HM your symptoms make this equally important. Considering the wide range of sensory and motor impairments that you're experiencing it is very important that you rule out more serious disorders. Honestly that's the best advice I can give you: make sure that you're thoroughly checked out by a good neurologist. While all of your symptoms may not be directly related to your migraines their presence strongly suggests something more than "migraine with aura" (suggests being the operative word--it's very important to explore the possibility of more serious conditions, if only for the sake of ruling them out).

Finally, shaking or convulsions are not uncommon with these types of migraines. FHM is actually quite often misdiagnosed as epilepsy. As for your hearing loss I (obviously) really can't say. That's something that needs to be very thoroughly investigated by your neurologist. In my eyes at least your case seems quite atypical which, again, makes it all the more important that you're proactive in investigating it.

Well I wish you the best of luck and I'm sorry I couldn't help more. Please keep us posted as you learn more.

Ben
Posted 9/26/2009 8:20 PM (GMT 0)
Hi art chick!!!

I´m with Ben here, it is important that you get investigated by a neurologist, to rule out other diseases. I have FHM and all of us who has it, have done

 many test to rule out other diseases.

Ok to your questions both HM and Basilaris have all the same symptoms eccept that in HM you also have the paralysis on one side and that is something Basilar patients don´t have, and if you have Basilaris you can have hearing losses,that is something we with HM don´t have.

All theese are aura symptoms and they come and go, so about your hearing loss who´s progressing, i am certain that there must be another reason for it.

However the very first time i got paralysed it was my hole body on both sides, the only thing i could move was my eyes and mouth, i was so in the hospital

for one week, but after that first time i have always only had it on one side of my body ( always the right side )

And yes i have theese shaking body things and we are many with HM who has them.

So if you see a neurologist soon i am pretty sure that you after some tests can have more answers!!

Good Luck / Sweden

Posted 9/27/2009 4:15 PM (GMT 0)
thanks for the info! a bit of clarification: i have good neuorologist who is also a headache specialist who i just started seeing who put me on 75mg of topamax this month. the middle of the night incident was six years ago. and i was hospitalized 2 and 1/2 years ago for 3 days when i couldn't lift my left arm or my legs but neuro refused to come in. the arm movement came back in a few days but legs stayed weak for 2 months on and off. had a spinal tap and ct and mri, all clear. but mri did show the white spots consistent with migraine and i have history in the family.

the other possibility for the hearing loss is severe bleeds that led to a hysterectomy this spring. the audiologist said it's possible that overall blood circulation and flow was disrupted month after month for years so we have to see if it stabilizes.

what other tests do i need?
Posted 9/27/2009 8:41 PM (GMT 0)
Hi again art chick!!!! :-)

That´s good that you have a migraine specialist. how often and how long are your seizures when you get them?

When you were in the hospital, why did the neuro refused to come in?

Did you start with 75mg dose of Topamax? I no i have many questions here smilewinkgrin   Do you have any speech problems?

You mentioned that they did see white spots consistent with migraine at your MRI ? I have never heard of such a thing??

For me and many of us with HM they took also EEG tests to rule out epilepsy, there is a rare form of epilepsy that gives

many of our symptoms.

And since you also have that shaking thing, maybe you should have some kind of EP test too. ( I am not a doctor!! )

but have read and discussed HM for some years now, so.............thats why i ask so much and so on!!

Hope you will have a great week!!! / Sweden

Posted 9/28/2009 8:08 PM (GMT 0)
i shake when i try and go off the meds and before i started them, on and off for a few months. it lasts anywhere from 20 min to two hours but the last time, when trying to go off the med, was six hours! i re-took the med since i was clearly in trouble (since i had no diagnosis at the time and the doctors had already given up on helping me) and waited and finally it stopped but i was exhausted for two weeks after that episode.

when i went to the hospital the really bad time i mentioned earlier, i was slurring my speech. that only happened one time. the neuro sucks at that hospital i guess. . .my new neuro/headache specialist said it's not the first time he has heard of them refusing to come in.

the mri "spots", i meant the white matter lesions i think they are called.

i started on 25, then 50, then 75 on topamax. and now it's been about 3 weeks at 75. lots of side effects but they are all better now, thank goodness.

i'll ask my doc about those tests, thank you!!
Posted 3/5/2010 3:45 PM (GMT 0)
Hello,

I came across this post while looking for other information about Hemiplegic Migraines (I have had them since I was 18 and badly since 2003).

You mention "loss of balance constantly". I had this too but it has more or less been eliminated by a very large dose of Vitamin B2 - 400mg. Don't confuse this with the more common vitamin B12. Talk to your neuro about it (It is a large dosage so I don't recommend just taking this without getting your neuro's opinion). It has helped me a lot.

Frenchbean

Posted 3/6/2010 4:15 PM (GMT 0)
hello everyone im new here and so pleased to find you all i have hemerplegic migraine i will post more again about myself but all you say sounds so like myself
write soon
Posted 7/28/2012 4:00 PM (GMT 0)
My partner has suffered with basilar migraine for the last seven and half years and although his neurologist believed that it was basilar migraine he always said that it was a working diagnosis as my partner has tried various medication but unfortunately nothing have worked up to now. My partner has been investigated extensively by his neurologist but his neurologist referred my partner to the national and international neuro hospital in queens square London where my partner was seen by dr matharu top migraine consultant in the uk and he did confirm that my partner does have basilar migraine and suggested a few different treatments to try so at the moment he is trying gabapentin. Dr matharu also suggested that my partner should be tested to see if he had hemiplegic migraine too.

My partner has the aura also known as attaxia which is slurred speech, blurred vision, unsteady on his feet, headache, the room spinning, ringing in the ears and can also become very disorientated and loses consciousness and has ended up in a coma of several occassions. It usually lasts a few days but feels weak afterwards as it completely wipes him out. It takes about two weeks for him to make a full recovery but thankfully he does make a full recovery.

On one occassion when my partner was admitted to accident and emergency a nurse came on to me and said that she suffers with something similar, she said I suffer from hemiplegic migraine and said that she takes a herbal remedy called fever few, a tablet in the morning and another in the evening and she has had no problems for about 3 years. She said that fever few can work for both basilar and hemiplegic migraine but you do need to speak to a neurologist first as they don't like complimentary medicines. Also if you are taking prescription drugs please do not take a complimentary medicine as well as it can interfere with your medication and cause problems. SO PLEASE SPEAK TO YOUR NEUROLOGIST FIRST!

Dr matharu also recommended kettermine nasal spray which you take on the onset of the aura and it does stop the aura but it also comes with it side effects.

I hope this information is helpful but please speak to your neurologist before taking anything that has been recommended by anyone other than a professionally trained health specialist.
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