New Sufferer of Hemiplegic Migraines

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Springhm
New Member


Date Joined Feb 2011
Total Posts : 2
   Posted 2/25/2011 9:26 AM (GMT -6)   
Hi I'm TJ,

I am a healthy 33 old male and I was just recently diagnosed with Hemiplegic Migraines. My first attack was last Monday. I was out doing errands when I noticed my right leg was paralysed, I thought that was odd, I shook it quite a bit and was able to regain feeling in it. Then my right arm did the same thing and then I started to freak out. I drove myself to the hospital with one arm and by the time I got there I could start to feel my arm, then the numbness spread to the right side of my face and mouth. Eventually I couldn't talk. I was able to regain all motor function and speech about one hour after the original event occurred and was left with headache on the left side of my head. Of course I had all the blood tests, CT, CTNU scans and EKG. At first they thought I had a Tia. But the Neurologist belived I had a Migraine. I had never heard of this before and was relieved to hear it. Now I'm not so sure. I have had another attack two days ago but this time it was my left side. I called the ambulance but by the time they got there I had regained my motor functions. My neurologist had scheduled an MRI for me on Thurs and it came back normal.

My question is does this sound like a HM and if so what are the best treatment options out there. I've heard alot of good things about Verpahmill for prevention, but what are good treatments for the actual attack. Also I've heard about the supplement Migrelief has anyone on here used it and is it effective for HM sufferers? Thank u all for any information.

TJ

jewishmother
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 2/25/2011 12:53 PM (GMT -6)   
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

Springhm
New Member


Date Joined Feb 2011
Total Posts : 2
   Posted 2/25/2011 1:58 PM (GMT -6)   
Thanks so much for the reply. This actually my first time I have what has been described as a "migraine" and as far as I know only my grandparents had regular migraines. So I'm thinking I have sporadic. I believe my trigger might be sleep related as my first followed me having only 1 hour of sleep after working the night before for 12.5 hours and my second was after I took a nap. I've read that doing things put out routine like naps can trigger it. I've also completely changed my diet since the first attack and have eliminated all know major trigger foods. Finally I've anxiety for a while and my GP and neurologist believe stress may be my major trigger so they have me on Xanax and Paxil. I'm seeing a Headache specialist on Thursday to see what he thinks. Thanks again for ur info.

Cheers
TJ

Also does anyone have a positive story about these type of migraines and good treatments as I have been looking and my prognoses seems depressing.

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 2/26/2011 6:20 PM (GMT -6)   
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)


tsiesel
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 5/19/2011 11:12 AM (GMT -6)   
Hello T.J.
 
I have been suffering from Hemiplegic Migraines for several years.  My biggest trigger is floresent lighting.  You may want to consider if they have an effect on you.  I am still looking for help with this.  I wear sunglasses to block the lights.  It cuts the effects but does not prevent the onset of migraine.
Tina

knbk
New Member


Date Joined Jun 2011
Total Posts : 1
   Posted 6/3/2011 10:47 PM (GMT -6)   

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!


pinkjody
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/23/2011 5:25 PM (GMT -6)   
Hi guys --

Just thought one of you might have some input for me - Had my first severe migraine experience about 3 weeks ago... Saw the flashing lights for about 6 or 7 days in a row a couple times a day... on the 5-7th days, i started to feel numbness in my leg... a few days later, woke up completely numb on my left side. The next day, woke up completely numb on my right. It's been almost 3 weeks and I can't seem to shake the slight numb feeling from my left leg. I feel the slightest feeling of what I'd say feels like goosebumps up my left side, but nothing extremely invasive... more annoying than anything else. Anyone ever experienced the numbness for weeks? Had an MRI this morning... CT and Lumbar Puncture were clear. Thanks!

Sherri0120
New Member


Date Joined Aug 2011
Total Posts : 15
   Posted 8/25/2011 1:02 PM (GMT -6)   
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
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 8/26/2011 9:24 AM (GMT -6)   
Hi, i am sorry to hear that you also suffer from Hemiplegic Migraines, I am 17 years old, i have suffered from Migraines with Aura since i was 10 and i was diagnosed with hemiplegic migraines earlier this year. Ever since being diagnosed they have basically ran my life. My Family tell me to try and get on top of them and fight them but they don't seem to realise that i have been trying.

In the past month i have had 6 attackes which is not very common for me. Before being diagnosed with HM i was suffering migraine attacks once every few months. When i had my first HM attack at first we all thought i'd just get a migraine as i went blind as per usual, but before the headache started the entire left side of my body went numb and i lost the ablility to speak. It was horrible! My parents took me straight up to the hospital where i saw a doctor who could immediately tell me and reasure me what was happening, as he was a migraine sufferer and when he was younger he suffered HM. I spent about an hour talking to the Dr and eventually the feeling came back in my body and i was able to talk. I a way i was relieved that it was a migraine rather than anything more serious, but they are horrible to live with.

Up until earlier this year, i was at college studying what i always dreamed of study, sport. However i ended up too ill to continue with the course and had to leave college. I now work in my local hospital and am hoping to go back to college in september to study public services, However i am worried that the same is going to happen again. We think my migraines are mainly caused by stress, but i stopped eating chocolate and Cheese when i was just 10 as they could have also been my main triggers. I don't drink coffee or take in much caffiene as i also know that they can be triggers. But i'm still getting Migraines on a regualar basis.
Could anyone tell me other triggers that they find cause attacks??

Being only 17 i can't take some of the medication that other HM sufferers take so at the moment i am just on 25mg of Amitriptyline and 0.5mg of Piotifen a night. When i feel an attack coming on i take Naproxen which seems to help the headache but doesn't help anything else. I panic alot when i'm having an attack which causes me to have many panic attacks throughout. Doesn't help that i also suffer anxiety, asthma and hayfever.

If only there was a cure to stop us all suffering. But theres not yet.
Good Luck to you all, i know what you feel like, we've just got to keep fighting and hopeful soon they'll find a way of stopping us all getting them!

Sherri0120
New Member


Date Joined Aug 2011
Total Posts : 15
   Posted 8/26/2011 12:22 PM (GMT -6)   
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 gary@performwell.net. 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!!
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