New Sufferer of Hemiplegic Migraines

I have basilar migraines and like HM it does have some pretty unnerving aura symptoms. Do you have any history of migraine in your family? It is important when dealing with migraines to try and determine any triggers. If this is your first time dealing with HM have you made any changes in your daily routine? Eating or sleeping habits? There are several abortive and preventative meds that you can try - unfortunately you may have to try several before you might find one that works for you. Has your neuro suggested any meds? My best advice with medication is to start out with lower doses and see how your body handles the side effects because they can be just as bad or worse than dealing with the migraines! Good luck and stay in touch! Leslie

Hey Tj

HemiL here I have Hemiplegic migraines too. July 2011 is my 4th year anniversary of sorts. Sorry to hear about all you're going through. That episode sounded really scary. I don't know if that is a hemiplegic migraine only a doctor can confirm that of course, if you are not satisfied or convinced with what is being said please seek a second opinion. I can't count how many doctors I saw before I finally received a diagnosis of hemplegic mgiraine. I am sure there are many people on this site who can say the same. They may also recommend,like I am about to, that you seek out a headache specialist if you haven't already done so.

I will say your symptoms sound a lot like mine. I have right sided numbness with pins and needless that spread to my mouth and face and my speech becomes garbled or slurred. I sometimes have right sided paralysis when my migraine are very bad, as well as other symptoms that affect my hearing, walking, breathing, etc,

Right now I take 360 mg of Verapamil. When first took Verapmail I noticed an improvement in my headaches and had my doctor bump up my medication to 240mg. I eventually had to go to a higher dose. I also take Topamax 200mg. I experience side effects as well (weight loss, loss of appetite visual disturbances). But I will say that is been the only medication, when it did work, that took away my migraines & hemplegic symptoms completely. I have yet to try more medications since I still experience daily Hemplegic episodes.

In addition these to medications I use Diclofenac POTASSIUM 50mg every 6 hrs, as an abortive. I find this drug helps with mild to moderate migraines. It does not work on severe migraine pain for me. Along with these medications I have tried some others preventative medications. *Hopefully one of them will work for you or someone else.

Neurontin 300mg (On this medication for 3 months and gained 30lbs) withdrawal symptoms were the worst I have ever experienced) the drug helped with neuropathic pain. It did nothing for the numbness, facial pulling, weakness, etc

Diamox 1000mg (approx. 6 months caused visual disturbances, dehydration) it had minimal impact on my migraines in my opinion. Maybe it will work for someone

Namenda 50mg (approx 10 days (caused drastic mood changes) had no impact on my migraines or symptoms. I take a number of other medications so maybe that could have been a drug interaction.

Amitriptyline 50mg (used it for approx 6 months caused) no effect on migraines

Nortiptyline 50 mg (took it for approx 10 months caused weight gain ) minimal impact on hemplegic migraines and symptoms.

Some of the Abortives:

Execedrin (Rebound Headache city)

Relafen and Flubiprofen, These two were not as effective for me because of the dosage times. They were so that I could not take them often enough.

I also tried Tramadol a weaker narcotic my neurologist does not want me taking narcotics because of his of narcotics and their association with rebound headaches but when these headaches get going really bad, which isn't that often, then boo him. I have some narcs that I have for another condition and I just have to take them because I refuse to sit and be in pain for anyone's theories. No matter how right they are. Also there is a drug interaction between tramadol and verapamil sooo.


I take supplements Magnesium, B2, Melatonin, C0Q10 enzyme

You mentioned Migrelief I hurried and looked it up to see if I could try it. After some research I read it contains Magnesium, Riboflavin and Puracol Feverfew( That ingredient I am little weary of because I've read it may cause rebound headaches. This is something I do not need. Have you heard of Butterbur. This is something after some looking into I am going to give it a go. Of course ask your doctor first before taking these supplements for allergy risk, potential drug interactions, etc, etc

Keep in touch,

HemiL

Post Edited (HemiL) : 2/26/2011 5:26:16 PM (GMT-7)

Hey all I have been suffering with these hemiplegic migraines since i was in college, in 1996.  I woke up one day and could not move-through a series of tests, they diagnosed them as hemiplegic migraines, although some of my ana levels come back borderline (lupus or rheumatory arthritis).  I cared little about them in college, and did as I pleased (the young are invincible)!  I had my first son 6 years later and six months after having him, collapsed at work.  I was put on Neurontin (i am allergic to sulfa which eliminates a lot of drugs), I gained 2 pounds from that (on top of the 15 I still had to lose form my pregnancy, I was not happy)!  I was on that for about 3 months and then on Depakote for three months- and then I got pregnant again.  Since then 2005- I have suffered terribly and am now out of work. I had my last child (I have no migraines when I am pregnant by the way) in 2007 and after her, my body just seems like it died.  The migraines rule my life. I started Topamax in January- 25 then up to 75 mg, I was thrilled because I thought i would lose some of this weight that all of the meds and steroids have given me- but THAT DID NOT HAPPEN.  I felt like a moron on that drug- and two weeks ago took myself off of it- DO NOT DO THIS--THERE IS SERIOUS WITHDRAW-SIMILAR TO BEING A HEROIN ADDICT MY NEUROLOGIST SAID!  I am slowly getting over the terrible withdraw and will go back on my verapamil in hopes it will work again (I was on it so long it stopped working).  I am also going for Botox injections and nerve blocks.  It is so frustrating, because the symptoms feel like I am having a stroke.  I start to panic ever darn time, even though I know what it is!  I can't help it- so you are not alone!  Reading a lot on line is not good either. I am in Philadelphia and see one of the top doctors here and in the u.s- he just gave me a script for the gene- it can be tested- o ask yours and see if you can have the test - it will at least ease the worries that these attacks are what the docs say! I get numb, tingling, and just a different feeling on one side of my body- someday s I would rather have some curable cancer- I am amazed that these cannot be controlled- but they cannot- not unless you take medicine and everyone's are different.  Please stop the Topamax- it worked wonders for my migraines the best yet--- but the side effects are horrible, and the withdraw after is unthinkable, i considered committing myself - no joke! I am a mother of three and   could not imagine being on a higher dose than the 75 mg(it was making me insane and stupid)   I am thinking the higher you are the more weight you lose. I was praying to lose weight and tried to hold out until I did (I was 110 pounds my whole llife- and have an extra 45 pounds now) but Topamax is not the answer- try some thing else and keep us posted- yes there are goos things about htem- you need to learn to deal with them- I vacation, drink socially (with three kids that is difficult) and live a mostly normal life, I am just totally irritable when there is too much noise, or when I have a migraine- if I sleep it off then I am good to o- stay hydrated and do not panic- i think i would be so much better if I would stop worrying about whether or not the docs are right!

Hello TJ and all,

WOW I can't believe you got a diagnosis so quickly, usually it takes YEARS. I also can't believe how quickly yours resolve. I've suffered from HMs for years. Mine are always different. Sometimes it's my legs I can't feel, sometimes it's my arms, sometimes it's my right side, sometimes it's just one limb. I never know what to expect. The paralysis usually lasts for several hours (I try to sleep through it since there is nothing I can do about it) then several days of total weakness in the limb(s). It usually takes me quite a while to fully regain my strength after paralysis.

Like already suggested you have to find a good headache specialist. We all react differently to drugs. Drugs that work wonders for others do a number on me. Drugs that work for me do a number on others. It's just a matter of figuring out what works for you.

You also wants a doctor that listens to you. If any doctor tells you anything is all in your head make that the last time you see him. We get crazy symptoms and we need someone who understands.

I know there are lots of different drugs for the pain or prevention but I know of no treatments for the paralysis. I had a seizure after one a few months back (it was a side effect of one of my medications) anyhow by the time the seizure hit I was 4 hours into the migraine and the pain was gone. I had convulsions for about an hour (so they tell me) and afterwards the only lingering problem in the ER was the paralysis in my legs. The doctors couldn't do anyting about it. They ran all sorts of tests (most of which I didn't remember until I got a copy of my medical record) but pretty much let me sleep until I got some strength back. Then it was a week in bed recovering. So as of yet I've not learned of anything to stop the paralysis. I sure hope somebody on here has the answer because I'm looking also.

In between migraines try to stay as healthy and fit as possible. The better shape you are in the quicker you can recover from them. If your muscles start out weak it is harder to regain strength in them after one. I swim to stay in shape and get relief from them. 5 days after the seizure I was back in the pool just walking determined to get my strength back.

I also had to learn to give myself a break. It's ok to rest when you need to. I used to feel so guilty sleeping so much but then I realized that I couldn't sleep a weekend away if my brain didn't need it. My new motto is I do when I can and I don't when I can't.

Good luck to you!

Butler93,
So sorry to hear you have them so young. I sure hope you get control of them soon so they don't continue to impact your life.

I sure understand about family not understanding. Friends don't understand either. Heck I think the only people who can really understand are those who suffer from them. I have basically become anti-social just to keep people from pushing me beyond my limits.

For the life of me I could not figure out my triggers. I would cut something out of my diet and have no change. It wasn't until I did blood testing that I found out what foods I was reactive to. Some of these will surprise you, they sure surprised me.

I'm reactive to, and get migraines from:
Basil, Black Pepper, Cheddar, HOPS, Lima Bean, Baker's Yeast, Beet, Cashew, Cauliflower, Cinnamon, Cot Cheese, Cow's Milk, Fructose, Garlic, Grape, Green Pea, Lentil, Mushroom, Olive, Onion, Pear, Phenyleth, SMB Sulfite, Solanine (I don't even know what those last 3 are), Sweet Potato, Tapicoa, Tea, Vanilla, Watermelon, Wheat, Corn and Pork.

You'd also be surprised to learn how much these are in foods we eat. Beet sugar is in a lot of juice, or a substitute for cane sugar. Grape juice is a base for a lot of juices, Vanilla is in everything, even the dairy substitutes. I didn't think tapioca was a big deal until I found out a lot of gluten free (wheat free) recipes used tapioca flour as a substitute. It's just crazy what you learn when you have to start reading lables.

But since I've cut these things out of my diet my HMs aren't as frequent. If you want to check into it I used [email protected]. I've never met him and I don't get a kickback from him. All I can say is he changed my life. I could never figured all these out on my own.

Good luck to you!!