Migraine

Does anyone here have experience treating hemiplegic migraine? I have just started Topamax for preventive therapy and have changed diet, supplements, etc... But what can I take when it HITS? I read something about not wanting vaso-constrictors because of risk of stroke?

I believe there are studies going on now to see if this is indeed true.

There is Midrin that you may be able to try.

Jaimee,

I have hemiplegic migraine also, and have been cautioned not to take the triptans because of the possible increase in stroke risk. It is my understanding that nobody really knows if the risk is theoretical or real, but most doctors play it safe and don't use the triptans. You can ask your doctor about this.

So then, the question is: what do you do for a bad attack? I can tell you about my abortive/rescue medications (past and present), which might give you a leaping-off point with your doctor. Since we're not allowed the simple solution (a triptan), we generally have to have a few different medications that target the various symptoms of an attack: the hemiplegia, pain, nausea, etc.

The key medication right now in my rescue meds is Benadryl (IM shots, not oral). There is debate about whether this is a rescue med or an abortive. I consider it to be an abortive, given that I usually experience a reduction in my left-sided numbness about 20 minutes after my shot. I have also taken Neurontin PRN as an actual abortive - again, it reduces the neurological symptoms, and does not merely mask pain and nausea.

When I've had to go to the ER, I usually get (these are all IV) Zofran (for nausea), Benadryl alternating with magnesium, and sometimes Depacon or Keppra IV. I sometimes also end up with a pain med, usually Toradol. I stay away from narcotics.

So, at home I have Benadryl IM (for the neurological symptoms/pain/nausea), Toradol IM (pain), Zofran (nausea), Vistoril (nausea, dizziness and pain), Norflex (pain), Ativan IM (vertigo and agitation), and a liquid mixture of ibuprofen and acetominaphen for mild pain. My instructions from my doctor are to start with the most bothersome symptom, then work my way down the chain alternating medications till I get the relief I need. I have very specific guidelines (which I put in a chart) about how many days per week these meds can be used, how frequently (hours between), etc. I also keep a detailed log of their use.

I cannot emphasize enough - I'M JUST GIVING YOU AN EXAMPLE OF MY PERSONAL REGIMEN SO THAT YOU CAN ASK YOUR DOCTOR ABOUT A MULTI-MEDICATION APPROACH! Hemiplegic migraine is really, really tricky to treat. You usually end up with multiple preventives AND multiple rescue meds.

Don't get discouraged by hearing from anyone, "Those are just rescue meds and they only mask the pain and nausea" or whatever. Some of these medications actually do abort neurological symptoms. Unfortunately, some of them need to be administered IV or IM, so you either need your doctor to write some standing orders for the ER, or you may need to learn to give yourself shots at home.

My best rescue regimens have come from doctors who understand what a bind we hemiplegic migraineurs are in, and that we really do need a bunch of rescue options in order to deal with multiple symptoms. Nausea and dizziness is often a huge feature of hemiplegic migraine, and if you don't get some meds specifically for that symptom, chances are you'll end up in the ER getting IV drugs and lots of bags of fluids. Much better to have a pill. (Zofran comes in a dissolvable tablet now that you can put on your tongue - goees in a little faster)

I hope this helps. I'd head back to your doctor's office with a bunch of questions and start asking to try more meds. As long as you have very specific instructions on limits of use, and perhaps some blood draws (I usually end up with blood testing every few months) to make sure your kidneys can handle clearing the drugs, you may be surprised by how effectively you can treat an episode.

I'm sorry to go on and on, but it's a complex issue and the drugs are many! Time for a conversation with your doc!

Don't give up. Triptans are NOT the only solution. But for safety's sake, if I got offered the triptans again, I'd want to have a big discussion about risk.

Lynne

Thank you for the replies.

I guess I have a long road ahead of me.

I am wondering if I eventually will be seeing a headache specialist. Right now I am charting my "headaches" which can difficult because they don't always come with the "ache" part and can differ greatly from one to another. So my family doctor (he is a WONDERFUL man who finally diagnosed me!) is the one who just put me on Topamax. I think I was so ecstatic to have an official diagnosis, I didn't stop to rub the two brain cells together and ask, well what do I take when the ding dang things actually happen? duh.

So I had another one this past, well kinda Saturday-fizzling out now... only it wasn't the hemiplegic kind... not really sure what it was. It came with the really bad vertigo/disorientation/back of the head pain... I took meclazine, ibuprofen, tylenol and went to bed to keep from passing out while the kids ran around destroying the house and trying to noise each other to death.

Anyhow. You've given me some to think about that's for sure. I go back to the family doc in August to discuss how the Topamax is going. Perhaps then based on my journaling, I could ask or he will recommend a headache specialist. I have this intense fear of appearing to be a hypochondriac, after essentially being told by... 4 doctors before him just in the last 10 months that its "all in my head." But I really do want the best treatment. And its hilarious because I have probably been to the doctor maybe 5 times my whole life until all this happened. I've always done everything with herbs and homeopathics... but this is bigger than me. So here I am--- GIVE ME DRUGS! PLEASE!

With this type of migraine, your best bet would be a headache specialist just because of the complexity that comes along with HM.

Dear Jaimee,

I just posted to you in the welcomes also - hello again! I'm with Eileen on this one about getting a migraine specialist as fast as possible.

I diddled around with general neurology for quite some time, and was actually lucky enough to end up with a stroke specialist who was a truly good doctor and a wonderful person - he just educated himself like crazy, did consults with his friends nationally, and got me on my way. Then I wasn't so lucky after I had to stop seeing him.

FHM is such a complex disease and is (frankly) so difficult to treat successfully - not impossible, just difficult - that if I could do it over I'd cut to the chase and get a specialist right away. One of the reasons that you'll find in the literature is that the postdrome (lingering symptoms) of FMH are unusually long, and leave your brain in a sensitized state that is more receptive to new attacks for a longer time than regular migraine. So, you likely need aggressive treatment with multiple drugs, and most neurologists are a little afraid of getting in there and pushing up doses to levels that are effective. A good specialist will be careful but more aggressive.

Re: your fear of being called hypochondriacal. I'm a little afraid to be sarcastic here because I don't know you much, but what I want to tell you is to go ahead and let go of your fear -- because it's going to happen! At least once. I can practically guarantee it. But probably not with a specialist. Lots of us can advise you about how to handle this situation, but it will all come down to "if you can't educate this person swiftly, fire them and move onto the next doctor". I've had more psych consults called in (even in the ER when time was critical) than I can count. I always bring my husband to the first three appointments with a doctor because they are more likely to take reports seriously when there is a witness present, plus if I have to bail out, my husband is really good at being challenging.

But you're not a hypochondriac. You have one of the most complex neurological illnesses. You know, FMH is one of the most studied types of migraine right now, because they are actually doing the gene mapping, etc, and our brains do some pretty interesting things under scans, etc., so the research scientists are pretty interested in our affected families - it's just that a lot of the practitioners haven't caught up with it. You are not making any of this up, and if anyone implies that you are, try explaining the symptom one more time in case your explanation was confusing, and if you still reach a brick wall, run for the hills and try the next doc.

Specialist, ahoy! Don't waste time like I did. I have a specialist at Diamond Headache clinic in Chicago - I see Dr. Urban - and he is my hero. Just looked at the diagnosis and said, "How interesting. You have quite a rare variant. You and your family must have had a rough number of years." and then went on to his own assessment. I almost kissed him.

Good luck. Keep asking questions. Push on for treatment as you absorb this diagnosis and get more informed. It's livable. I've done it for years. It's not always pretty, but you can do it.

Lynne

Thanks. Seriously. It is a breath of fresh air just to hear someone acknowledge that I have SOMETHING, ANYTHING. lol. No, I am one you do not need to fear being sarcastic with. I cannot help myself, and oftentimes forget that people cannot see my facial expressions online.

Yes I have been called crazy by 2 neurologists, and Ear/Nose/Throat, and a Family Practitioner. All of them said that the vertigo and muscle weakness/paralysis could not be related even though they occurred at the same time. And all of them suggested a psychiatrist. The psychiatrist was the only one who took me seriously and was so happy and relieved last week to hear my "real diagnosis" and gladly released me for migraine therapy.

My family doctor who diagnosed me said he actually has a few patients with FHM, which is why I kinda thought I'd stick til August when I go back to discuss the Topamax... Though I desperately want to kick this thing in the hind quarters. Plus I really think I've got at least two different kind of migraines going on. One is the hemiplegic which is huge and lasts the longest (Ive had 2 BIG ones in the last 10 months--- 1 that lasted 6 weeks and 1 that lasted 2 weeks)... But then after that it seems like I'll have these others... that are different.

I guess that's why I'm doing the diary. I have formerly tried to ignore the "smaller" ones because I figured if noone cared about the big ones, who'd care about the small ones? And at least the small ones were only a few days or so and I could usually still use both sides of my body But yeah... Maybe a specialist would be the way to go... My main issue is childcare. I don't have any. It has been a very difficult time trying to go see these doctors which can sometimes take hours when I don't have anyone to watch the 4 children. My family is about 2.5 hours away and my parents still both work full time. Kind of frustrating. I guess I'm hoping I'll see this miraculous transformation from the Topamax and I just won't have to worry about it anymore.

Yes. I AM an idealist.

My mom's "episodes" eventually stopped. She had them off and on from the time she was 30 til she was maybe 45, but they weren't bad. She would take benedryl and sudafed (she thought it was her ear)and rest and it would go away. I'm hoping mine will go away too.

Sorry. I just totally changed this whole thread to something else altogether.

So what can I take over the counter when this stuff happens? Is it ok to take the standard pain relievers? Will that even do anything if I'm not experiencing excruciating pain? The meclazine helps tremendously with the vertigo/nausea. Would oral benadryl do anything?

Jaimee,

Dear, I understand what you are asking as far as what you can take. I understand your position, I truely do.

The only thing we, on the forum can give you is our experiences, such as Lynne has. We can't say, "yes, Jamiee, take this or that". That would be medical advice, and the only person who can give you that is your doctor.

I know you are looking for answers. We all are, that's why we are here!

But for us to tell you what would be a good idea for you to take, would be irresponsible of us. I hope you understand that.

We can give you suggestions to talk with your doctor about....such as Lynne has when she's mentioned what she is taking, but you should speak with your doctor first, even before trying over the counter medication.

We here at mymigraineconnection and HealthCentral cannot give medical advice, nor should anyone else on the forum. They are not your doctor, they have not treated you, they do not know your allergies, your complete medical history. It is just not a good idea.

Please contact your doctor about this. And as I said before, with this type of migraine, you really should see a specialist. I understand you really like your PCP, but they may not have the best resources in which to treat you - no disrespect to them, it's just not their specialty.

See our list of specialists in the link I gave you in the previous posts. If you still need assistance in finding someone, you can contact Teri or Nancy via the email in their signatures.

I hope this does not come off harsh, it's just the rules we have to follow.

I'm sorry. I wasn't really asking what I SHOULD take as far as over the counter medications are concerned. I should have worded my questions more carefully. I was really trying to figure out what is AVAILABLE over the counter that is ok for that type of migraine. I understand though. I really will probably just wait until August when I can talk to my doctor. Sorry for the confusion.

No need for sorry here girl, no big deal!

I'll see if I can get another moderator that is maybe a little more familiar with HM than I am to help out.

Jaimee,

I totally understand your frustration over the child care issue. When my kids were that little, even with my husband as backup, it was so difficult to manage anything medical. Trips to the ER -- ugh. It was awfully complicated and I often felt pretty desperate.

If I may make a suggestion, however - another thing I would have done differently at the beginning of my illness was to swallow my pride in being independent (which was considerable - I've always been SuperWoman) and started asking for help from anyone I could possibly think of, instead of being so worried about inconveniencing anyone. You may be surprised at how many people get satisfaction from being asked to help out a bit.

I know we all have to do this our own way, but it worries me a little that you're going to wait till August to talk to your doctor about how to treat the "little" headaches. Here's why - the "little" ones are probably increasing the likelihood of the big ones happening. Just because they don't leave you paralyzed and so dizzy that you're hitting the floor doesn't mean you shouldn't do anything about them!

Could you maybe call your doctor or talk to the nurse over the phone or something? I bet they can do better than over-the-counter meds, or at least if they recommend OTC meds, they can advise you on how to avoid rebound headaches by limiting the number of days you take them, etc. I've gotten a lot done over the phone with doctors and nurses at times.

Hope this doesn't come off as bossy. You really should do whatever makes you comfortable. You're just pulling on my heartstrings a little because I remember how scared and tentative I was at first when I got my diagnosis, and how much I was having to juggle in order to take care of myself. I keep wanting to just drive over and take you to your doctor!

Glad the meclizine is helping. My dad and I have both taken that at times, and it can be a Godsend. There's nothing quite like having the world start spinning wildly when you're in the grocery store ...

Hang in there. You'll get this all straightened out. And the kids will be all right, truly. You're already making tremendous progress.

Lynne

P.S. So, you've gotten the "you're crazy" response already! Now you know what to run from. It makes me mad on your behalf that you've had to deal with that, because it can really undermine your confidence if you let it.

I have usually made ER doctors sorry when they called in a psych consult, because I'm a Ph.D. clinical psychologist, but I learned to withhold that information till the ER doctor got the consult in, and I got a chance to absolutely shred the case for hypochondriasis. I think at some point they put something in my chart about "don't bother to call psych, she's absolutely impossible to cooperate with" and just treated me medically. Obnoxious behavior on my part, I admit, but it worked. Guess that degree was good for something after all.

That is absolutely hilarious!

I think perhaps I will call the office the next time I have trouble. I just am very hesitant to do anything to ruin what I consider to be my first successful patient-doctor relationship ever!

Thanks for understanding about the kids and stuff. It has been really hard. I'll think I'm really tough and then another one will hit and its back to square one. But at least I have a diagnosis! I am definitely moving forward from here.

Jaimee,

You're being a tough cookie. Good for you. Hang in!

Lynne

I don't know a whole lot about hemiplegic migraine, other than what it is, generally, and I have no experience with it. It's certainly an understandable question you're asking, Jaimee.

Unfortunately, though, I don't have an answer. For one, I don't know which OTC meds, if any, are generally used with HM (again, inexperience). An added caveat, too, is that if there is such a list, I would suspect that the meds included on it might not be okay for everyone. It would definitely be dependent on your own medical profile and needs and such. Your best bet, as always, is to discuss this with your doctor and ask him or her which OTC meds might help you, and are safe for you to try in light of your history. That's always safest and best.

You can always call the doc's office, and ask the staff to get the doctor to give you some OTC ideas in the meantime if he deems it safe, and which you can discuss further at your appointment, if he is willing to do so.

quote:

Originally posted by Jaimee:
I'm sorry. I wasn't really asking what I SHOULD take as far as over the counter medications are concerned. I should have worded my questions more carefully. I was really trying to figure out what is AVAILABLE over the counter that is ok for that type of migraine. I understand though. I really will probably just wait until August when I can talk to my doctor. Sorry for the confusion.

Hi Lynne and Jamie,

I was hoping that I might ask a couple questions of both of you. I don't have a diagnosis of FHM, but am looking for reasons why this diagnosis doesn't describe me.

I have been sent to the psych., as attention-seeking or playing hypochondriac many times. I never had an unusual MRI, EEG or other neuro exam--but that fact surprises my doctors. So when they don't find anything its all in my mind, a severe panic attack and laziness on my part.

I have had these collapsing fits--I just crumple to the floor. I can't move. I can't talk. My eyes water, usually because of the frustration and fear I experience. I hear everything people say. I even have words in my mind, they just won't come out. I get very pale-ghostly white.

My children have never had a time in their life when they haven't seen me have one of these episodes. One of my most vivid memories of my children is their response during one of these attacks. We had a family function, the extended family had left so it was only the kids and I at home. I had crumpled to the floor. I couldn't move, talk, or even see clearly.

My 4 and 6 year old decided that they needed to put a pillow under my head. They debated calling 911, and decided that wasn't necessary. Then they discussed what would Daddy do. They decided that I needed motrin and caffine. One of them opened the motrin bottle, the other got a spoon and a can of Mountain dew and preceeded to spoon feed me. I just laid there on the floor, unable to talk, being cared for by a kindergartener and a preschooler.

The inablitity to talk,and move passed after about 30-45 minutes. Which is the standard course these episodes take. Afterwards my balance is messed up, I have almost constant dizzyness, and I tire easily for up to a month. I also usually have a fever that lingers for a while.

I take alot of medicine, all of them are on Teri's 100 medicine list.

I was afraid a couple years ago that I was never going to be able to use my muscles on my left arm and hand because of the numbness and locking up that would occur. I actually got rid of a lot of sewing things and other craft things because I really thought I wouldn't be able to use them. Thank goodness for medicines because my life definitely improved after I started them.

Is this what you are experiencing when you have a HM attack?

Mary in NM