Migraine

I'm just wondering if the hemiplegic migraine people could sort of check in all together again. If this has been done recently, please point me to the post and I'll leave this thread alone! I noticed that in the introductions board at one point last year, several people chimed in.

I've had so many experiences with doctors (not my current one thankfully) who haven't known diddly-squat about hemiplegic migraine that I really like hearing from other sufferers. Makes me feel less insane about the really weird symptoms and the incredibly long aura/postdrome stuff that goes along with hemiplegia attacks.

I saw that Mike (Solveig's husband) said at one point that Solveig has hemiplegic migraine. Who else out there is getting paralyzed these days?

(Don't mean to be flippant about the whole thing, but better to laugh than to cry, right?)

Lynne (mostly typing with right hand today)

My angel has another Husband???? Hmmm, ok but he is going to have to start pulling his weight around here. Learning how to give her shots would be a great start!!!

Hoping you are feeling well today.

Peace,

Dave

Lynne,
Not flippant at all! laughter is better than crying!

Im chiming in with my 2 cents! I have had my share of clueless drs too! My current one wants to try botox as nothing else seems to help except the depakote which isnt helping enough, and says there is nothing but my midrin to take for the pain, unless I wanna do narcotics..Those make it worse for me anyway. unfortunatly I cant take midrin most of the time, as I have to drop off or pick up or care for my 4 kids! BLECH!

I HATE the long drawn out auras and postdromies! heck I hate the long drawn out migraines! your not alone girl! or insane

Dave,
Good to see yall again! Hope you and Sol are well!


Tawsha

Dave,

Sorry. How embarassing. Can you tell that I have memory loss along with my migraines??? I have no knowledge that Solveig is sneaking out secretly .....

Momsbreak - I just posted to you about the abortives thing in another thread. So frustrating.

When I was in the hospital this last time, I'd been there one week and I had a MASSIVE case of rotary vertigo, which of course was immediately followed by a full hemiplegia episode. I think it was the worst one I've had in four years. It was because of the medication change I've been undergoing, I'm sure. My first thought was, "Oh, my God, I remember this and I'm not sure I can survive it again". Because I knew that episode was going to cost me a good month of difficulty. Now I can't find nouns easily, I tend to tip to the left, my face is still numb, and I don't dare pick up anything glass with my left hand. Bah. What a pain.

I'm hoping against hope that once I reach therapeutic levels with these new meds that they will knock the hemiplegic episodes down to a manageable level again.

Lynne

Hello Lynne
Just thought I'd post a hello too, I see hemiplegic migraines from a different point of view as it is my son Tommo who suffers from the sporadic kind.
He currently is taking flunarizine after being diagnosed about three years ago , after much trial and error with a lot of other drugs.
I also like to look for other people who have the hemiplegic type of migraines, as it seems to be quite rare.
It is because of that I searched for a site that could be a good source of information and insight as Ive yet to find one over here in the UK. Without sounding mushy thank god I found it here!!!
Take care for now and hope to see your posts soon
Regards
Sarah m and Tommy.xx

Hi Sarah and Tommy!

We'll keep an eye out for each other on these threads - I'm glad you showed up. A number of years back I used to read and post on the about.com site, and I found a few other hemiplegic migraineurs there. It was nice just to get some validation. The episodes can be so confusing!

I had episodes in childhood and adolescence that were not correctly diagnosed, so I do have some personal experience with childhood complicated migraine. I'm glad your son is being correctly diagnosed, and I'm sorry that he is having to go through this. I look forward to hearing about his successes in treatment.

Take care,

Lynne

Lynne,
Ah yes the symptoms you speak of sound SO familiar! Trouble finding words, spacy, left side weakness, just "off" on that side. It always seems to be my left side that does the migraine, weakness and paralysis, though I occasionally get numb and tingly on my right too.

I just pray that my 9 year old that was just recently diagnosed with migraines doesnt develop the hemiplegic ones!

Sarah and Tommy, So good to see ya again! How is Tommy doing? Hope all is well on the other side of the pond!

Great thread Lynne!

Tawsha and TJ

I'm not 100% sure what I have, but I get classic migraines & basilar migraines. at least those migraines are pretty clear cut.

I have episodes of muscle weakness, but not sure exactly what they are. I am assuming they are hemiplegic migraines since the doctors aren't giving me any answers:

First kind:
triggered by MSG, food additives, aspirtine, asthma attacks
often have long auras (weird smells, tastes, auditory hallucinations & cyclic paresthesias/dysthesias, muscle spasms) I often feel like I can't breathe. Mental confusion, cant get words out
R side of body feels numb, followed by sleepiness, lethargy and right sided muscle weakness (sometimes weakness can last over a week).

Second kind:
similar auras to the first, worse ones start on my left & then go to my right side, more common on my right. Fingers feel numb/paralysed & start curling up & arm curls up and folds up to my armpit. Right side of face and arm (and sometimes leg) feel stiff, then muscle spasms. Followed by a short term, jabby headache on the opposite side of my body( usually mid-center of my head). It's a bit different than my regular migraines due to location of pain & that it usually last only several hours. I'm not sure if I notice muscle weakness afterwards.

This usually happens when I am asleep, easily fatigued, have PMS or ovulation or triggered by vibrations/lights.

Third kind:
Usually triggered by emotion, long exposure to flourescent lights.
I try to flatten my emotions, so this doesn't happen as frequently.
Ranges from slurred speech, left eye turning in, left leg turning in (I have "corrected" strabismous & used to have gait problems as a child, but had orthopedic therapy to straighten my legs & feet). Worse episodes are when I feel weak & I feel like I am going to collapse.

I don't notice any residual problems afterwards, back to "normal".
Since this has an emotional part & I don't get head pain, I doubt these are migraines. There was a question whether I had Narcolepsy, but since I failed the MSLT (day time sleep test), we are still unclear what these episodes are.

My migraine specialist & GP thought I had a seizure disorder, my epileptologist isn't sure what I have, but doesn't think I had seizures, but thought I had Narcolepsy. My sleep specialist doesn't think I have Narcolepsy, but that I have Apnea & ???. It's all very confusing.

Again, some of it seems like hemiplegic, but there are a couple things I have that don't quite fit (like the asthma attacks, the curling, muscle spasms, etc.)

Alexandra,

Wow! I guess I have to assume that some of this stuff is hemiplegic migraine - but it really sounds like you haven't gotten good answers from your doctors. Have they done things like a 24-hour EEG, MRI/MRA, etc., to diagnose? Are they taking those symptoms seriously? What are they doing about it?

I'm no doctor, but those first two kinds of attacks sound a heck of a lot like mine. I have read that some variants of hemiplegic migraine can involve seizures or seizure-like symptoms, so it isn't an either/or question.

I'd be very curious to hear what your preventive meds are. I would assume that someone has been trying antiseizure meds? They'd be part of the treatment of choice for both the migraine and the possible seizure disorder.

How much reading have you done about hemiplegic migraine? I know it took me some time to pound it into my doctor's heads that there was research support for some of my symptoms (like the prolonged aura and the altered consciousness state). I kept having doctors blabber away at me about "auras can't last for longer than 30 minutes" or whatever, and I kept saying, "Read this".

I'm glad you're here and posting, and I certainly hope that you get some better answers soon. They can't treat it till they know what it is, right?

Good luck.

Lynne

Lynne,

if I had more time right now, you'd have opened a can of worms. (see if you can check my previous posts on this board).

No, I haven't gotten any straight answers from my doctors. The only doctors that I have a somewhat ongoing communication with is my GP and sleep doc, but this area isn't their specialty. My asthma pulminalogist never heard such symptoms before (I mentioned it to him because I sometimes have muscle weakness, etc. after an asthma attack).

I've had 4 sleep evals, 2 telemetries (72 EEG), MRI & CAT scans (last MRI & CAT scan were a little over a year ago). While I've had some of my symptoms occur during my sleep evals, it was my luck that my hormones have been unpredictably lately & didn't have my major neurological problems during my telemetries. I think I was so focused on the pain the bandages & electrodes on my head that it somehow cut off my circulation & decreased my chances of my symptoms ( having to drag a 20 lb box & plug it in kind of limits my activities as well).

My EEG results have been vague... abnormal baseline EEG, but no eleptiform stuff caught. Something about paroxysmal theta waves, generalizes & bitemporal irregular theta activity, left lateral temporal slowing... seizures "detected" but not "caught". Have no idea what that all means & I question if I'll ever get an answer.

I'm hoping an auto-pap machine will help my episodes at night, but I'm sure I'll get lighter sleep because of the machine & will probably be more aware of the episodes.

Anyway, I've basically read what was on this site about hemiplegic migraines & some other stuff online. My migraine specialist originally confirmed my basilar migraines & said my symptoms "sound like" hemiplegic, but didn't mention anything more about them. However, once he took a look at my MRI & EEG, it almost seemed like he was ready to pass me off to another neurologist. I originally went to him because I'm interested in treating my symptoms holistically, but my last appt he said that I need to see a seizure specialist & be on an antiseizure med.

Basically, my preventative meds are my asthma & GERD meds (GERD & asthma trigger migraines for me). I couldn't handle topamax (EXTREME side affects), elival (increased my symptoms, extremely sleepy) or ativan (makes me extremely agitated, muscle spasms). In the past, I took tofrinal & inderal, but had problems with them too. I take magnesium from time to time, but my stomach is sensitive. I do take multivitamins & evening primrose oil.

Midrin is affective for my basilar & classic, but often my I don't get as much warning for my hemiplegic ones. I can't take NSAIDs & taking tylonal is as affective as a sugar pill.

I am trying to patient, but I've been going through evals for the past year and a half. I'm really tired of all of this. I know my doctors are trying, but often I have to wait a couple months in between tests, appts. & it's really dragging out. And I will have no insurance come September.

In my opinion, it doesn't feel enough is being done to deal with this stuff. Sometimes I feel like I'm a hypochondriac complaining, but my quality of life has really taken a nosedive.

Alexandra,

I did take a look at some of your other posts. I'm so sorry that you're having such difficulty getting a good diagnosis and treatment plan. It sounds like it's all kind of a mess right now.

I think one of the hardest things (or at least it was for me in the beginning of this illness) is having really weird and unusual symptoms, and having to describe them to doctors over and over again. Some of them believe you, and some of them think you're nuts ... and it's really hard until somebody actually puts everything together and gets a treatment plan going.

I truly hope that this process keeps going along and gets easier. Your experience reminds me basically of my first two years of my illness - it took me that long to get evaluated properly and find a doctor who was willing to treat me aggressively and listen to me. It was a rough road.

Good luck to you. I will be wishing you all the best.

Lynne

Dear Lynne,
Just read your last posting and had to agree!!
To be in a doctor's/school/Gp meeting and have them all look at you as if you are completely "nuts" has seemed to be our way of life .
It really wasn't until we had the name hemiplegic that I found it easier to relate too, and research.
Tom is really with a great team and that does really help
does'nt it.? In a forty five minute assessment not only were we told what Tommy had but that it was real and although not curable (yet!), could be managed.
Again you are right about finding the right treatment plan and as Tommy is taking Flunarizine (Unlicenced in many countries including the UK) at the moment it seems to be helping him. This has taken two/three years.
Unfortunatly, he is still experiencing a secondary pain and this is due to be assessed on the 19th of May , when he has an admission.
I do think the best advice I recieved was that there is no magic cure but there are people out there who are willing to help. Finding those people is the first rung of the ladder !!
Tom has tried gabapentin. topiramate, propanalol, all to high doses. I am sure there are many more to try.
Sorry to burble on, but I would just like to say that Tommy for the first time in ages found these postings very helpful, he said that he does not feel so alone and that what he "gets" is happening all over the place...he even told his Nanny!!
That's a good medicine in itself.

Take care
Best wishes
Sarah m

Lynne,

Would you mind explaining what your migraines are like?

And if you have any articles/publications supporting any of this, can you include info or a link?

Again, it seems like my doctors (sleep, migraine, seizure) seem to think that the "other" specialties are what's really going on. I'll be getting CPAP for my apnea, but it sounds like my sleep specialist doesn't think I have any other sleep issues (beyond insomnia & circadium rhythm stuff) & keeps saying I need to talk to the seizure specialist (who seems a bit dismissive of my symptoms). I'll be seeing my migraine specialist in a month but it'll be a couple months before I see the seizure one. I understand their caution since I've had such bad reactions to meds, but it's very frustrating to me.

I would like to work full time again or at least have a job where I can get health insurance!! I am sooo crazy in debt.

it's very hard to remember everything to tell to doctors even with writing it down. I've had some of these symptoms for years, but the ones that are driving me more nuts started about a year & 1/2 ago. I guess because I rarely collapse & fall down it doesn't seem that serious. I'm sure there are people with much worse. It's just the biggest advice is to "ignore" my symptoms. I'd like them to ignore it if they had it! And it's really frustrating not only all this, but loosing time...sometimes I can't remember if I brushed my teeth (no memory if I did or not), took meds, fed cats,why am I driving, where am I, etc. And when it happens at work (I work with little kids), and if I am asked what happened at so & so time, I sometimes have to make it up.

Lynne (and others)... what are your treatment plans? How did you get your doctor to listen to you? Do all migraine specialists really know all the complexities of complicated migraines? How did you get diagnosed?

Did anyone else have abnormal EEGs? Any questionable MRIs (not major issues, but "possible" structural issues of the brain)? Were you told what they ment?

Alexandra - sorry it took me so long to reply. I'm still trying to regain some order to my life after this last hospitalization!

I do have daily headache (at various levels) all of the time, and my attacks vary in severity. The less severe ones start with me getting very spacey, nauseated, irritable (and having some difficulty communicating my thoughts), then usually progress to pain and dizziness.

My most severe attacks can start up with a variety of symptoms: heart palpitations, rotary vertigo, parts of my left side beginning to feel numb, or abrupt severe nausea. The very worst ones start with an alteration in consciousness - at its worst I actually lose consciousness briefly althought that's rare. The symptoms don't always progress in the same order, but generally I have some type of visual aura (always in the same spot), left side weakness and numbness that always travels to my throat and leaves me temporarily unable to swallow properly, aphasia (to some degree - at its worst I'm totally unable to speak), feelings of unreality. I also sometimes become abruptly agitated and actually shake for awhile. I get chills and sweats, and am extremely restless. I am completely unable to stand because of dizziness and lightheadedness. I can't stand light at all, or any kind of noise. If someone is speaking to me, I can hear them but sometimes what I'm hearing just doesn't make sense or feels so far away that I can't always get myself to reply. That's when I just sort of curl up into a ball (I'm sure I look totally insane when I do that).

What else? I stagger, lean to the left, my eyes won't focus properly, right and left become confused, I become uncontrollably sleepy ... and of course there is pain.

Afterwards, I have some degree of these symptoms for days. I'm not normal cognitively (lose my nouns, am slow to respond in speech, have terrible short-term memory, can't pay attention enough to read a chapter in a book). The nausea, pain, and dizziness take awhile to subside.

Fun, huh? I remember trying to get diagnosed. I began keeping meticulous track of the symptoms. I also documented who had actually seen me have them (usually my husband). I wrote down specific examples. Then I just kept repeating myself to doctors, along with my family history (father had severe migraine with vertigo and uncontrollable vomiting), and with my suspicions about my diagnosis until someone actually believed me.

I've had MRIs (all normal), CAT scans (all normal) and EEGs (with nonspecific abnormalities inconsistent with epilepsy).

I've been through so many medication regimens it would make your head spin to list them. I can tell you my current meds: Nardil, Nimotop, Klonopin, Lamictal, Gabapentin, Gabatril, magnesium, aspirin. My current abortives are IM Benadryl, IM Toradol, IM Ativan, Norflex, Zofran, and Vistoril. When I get IV treatment, I usually get IV Benadryl, magnesium, and most recently either Keppra or Depacon. It usually does the trick, along with a whole lot of IV Zofran.

I'm going to break up this post so it isn't too long. Hold for further info ...

Lynne

Links about familial hemiplegic migraine:



[URL=http://www.geneclinics.org/profiles/fhm/]http://www.geneclinics.org/profiles/fhm/
http://www.emedicine.com/NEURO/topic219.htm
(look at part about "migralepsy)

I must say (indignantly) that anyone who advises you to ignore your symptoms is a fool. Fire them. Immediately. They do not have your safety in mind.

Not all migraine specialists know a lot about hemiplegic migraine, but in my experience they're at least your best bet, and more easily educated, especially if they keep up with the literature. One of my favorite questions became, "Can you explain to me why this diagnosis (hemiplegic migraine) does NOT apply to me?" I became adept at printing out relevant info and handing it over, along with my lists of symptoms.

The rest of your speciality physicians may be unlikely to have ever heard of hemiplegic migraine, but at least if you suggest it as a possibility, or something you're curious about, they may take it upon themselves to do some reading and help you get to the proper specialist. Keep in mind that seizure and migraine disorders have been known to co-exist (it's in those links I listed above).

Frankly, about half my neurologists (the ones I fired), eventually told me that they thought I was exaggerating my symptoms, referred me to psychiatry, and told me I "couldn't possibly" be having that many neurological symptoms. Those were the neurologists who came up with the lamest and least effective treatment plans.

The other half were knowledgeable about hemiplegic migraine (or became so because they were intrigued with my case), believed me, took the stroke risk seriously, and kept trying everything new that came on the market. They understood that complicated migraine usually involves use of multiple preventives and aggressive intervention, and were willing to hang in there with me through a lot of medication trials. They helped me the most. It was a lot like rolling dice, and I still have a serious fear of being told I'm crazy, even though at this point my condition is so well-documented that it's unlikely I won't be believed.

I think the best advice I can give you is to become as well-read and educated as possible, to become a strong advocate on your own behalf, and to not go alone to your appointments. Go armed with another person and well-organized documentation and headache diaries, and lists of meds you've tried and the outcomes for them.

I say this because even good doctors become mired down in too many symptoms, and I saw relief on their faces when I said, "Look, I have all this written down, and this copy is for you. Will that help?"
Then it was possible for the doctors to ask follow-up questions to my lists of symptoms, etc, rather than try to wade through too much talking.

Again, best of luck to you. I hope this information about my own history and experience helps. I know nothing about the other specialists, but I can strongly recommend you find the best migraine specialist possible to take a good hard look at what is happening to you! It took me two years to find my first good neurologist. They were not fun years. But you sound like you're almost there. Keep pushing!

Lynne