Hemiplegic Migraine Help Please

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N&C
New Member


Date Joined May 2012
Total Posts : 1
   Posted 5/10/2012 5:56 PM (GMT -6)   

My boyfriend has Hemiplegic Migraine (FHM). He started getting them when he was 14 and he is now 36. The doctors never could find out what was wrong with him. They kept saying it was from stress or anxiety and sent him to all kinds of therapists and when all his tests and results from therapy came back clean the doctors told him that it was all in his head. He finally found a doctor that diagnoised him with Hemiplegic Migraines. He has been seeing Dr. M for almost a year now BUT he is still having a lot of trouble with his migraines.

 

   He has been Verapamil, Amitriptyline, Zonisamide, and Topamax. He is currently taking Verapamil, Topamax, and Zonisamide. Dr. M has tried imitrex and all the triptans there is for pain but they don't help him at all. Dr. M does not have him on any pain medicine because he said that there is not any medicine he can give him that are for the symptoms he has because he has so many. He only has Aleve or Advil for pain but those don't even help him.

 

He gets dizzy, unable to speak, his legs get weak, tingling mainly in his left leg, arm and hand; he also trouble using his hands, he has nausea, vomiting, light headedness, blurry vision, and he feels disconnected with reality when he gets the migraines.

 

I hate seeing him in so much pain all the time. I've never been with anyone with these headaches and I don't know what to do to help him properly. I try to help him monitor his food that he eats because the information I found online said that food is a big trigger for these types of migraines. But, we still don't know which foods cause the headaches. We keep a food journal (anything he eats, when he exercises, stress level of the day, and weather is written down). We also have a headache journal that we write in when he gets headaches and what his symptoms are before, during, and after. Chocolate, caffeine, and sweeteners like NutraSweet are the only things we have decided is for sure giving him headaches.

 

 

Does anyone have any advice for us? I read that the triptans have worse side effects in the long run. If this is true, what are they? What foods should we avoid? Are there any medicines that will help him with the pain?

 

Thanks for any suggestions!

Post Edited (N&C) : 5/10/2012 5:32:41 PM (GMT-6)


Griff21
New Member


Date Joined May 2012
Total Posts : 2
   Posted 5/14/2012 6:17 PM (GMT -6)   
N&C,

I have suffered with these for about 12 years. The 1st thing is that with Hemi migraines you should NOT be using any Triptans, they are vascular constrictors and can kill you. Before they figured out what type of migraines I had they gave me Imitrex and it almost killed me. With Hemi migraines the blood vessels constrict on there own (normal migraine the vessels open to far) and the Triptans make it worse......
I have been to many doctors, Cleveland Clinic, U of M and ALL of them made me promise to never take a Triptan again!

Hemi Migraine are one of the rarest forms of migraines, I spent years taking all kinds of preventative medication, around 35 different ones with no relief, had the nerves in my neck desensitized, had nerve blocks every 6 weeks, every type of pain pill with no help. I went back to my family doctor who I trust and was very open with him and told him I was ready to kill myself. He gave me the Fentanyl patch 10 years ago and it saved my life!!!!!!!!!!!!

The fentanyl patch helps me on most days and when it does not I take a Lortab or two, when my tongue starts to go numb and I start loosing feeling in my face and left arm I head to the doctor right away and they give me a 150cc shot of demerol and 75 of vistrail and I go home and sleep for about 4-6hrs, normally this will take the pain away but I am left to deal with the side effects of the Hemi, Slow or no speech, left side of my body is very weak and I feel like I am dragging it around, feel like the world is moving 110mph and I can not stop it, this normally last for 2-3 days before it gets better.

I hope this is good information for you and your boyfriend. These types of migraines are so debilitating and are far worse than a typical migraine because not many doctors have studied them or understand them.

This is classic Hemi
"He gets dizzy, unable to speak, his legs get weak, tingling mainly in his left leg, arm and hand; he also trouble using his hands, he has nausea, vomiting, light headedness, blurry vision, and he feels disconnected with reality when he gets the migraines."

I feel for you also just like my wife, you feel lost and unable to help him! I don't know how my wife has done it over the years but believe me he NEEDS you more than he will admit! PLEASE hang in there and just try to make him as comfortable as possible and re-assure him that it is not in his "head" as some doctors will try and tell him because they don't understand this type of migraine.

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 6/15/2012 3:41 PM (GMT -6)   
Hi N&C

I am sorry your boyfriend suffered for so long without a doctor him seriously. I know how upsetting and discouraging that can be. I only went through it for a couple of years so I can’t imagine going through that for as long as he has. The minute you said tingling and disconnected feeling from reality it was like you were writing my daily life story. "He gets dizzy, unable to speak, his legs get weak, tingling mainly in his left leg, arm and hand; he also trouble using his hands, he has nausea, vomiting, light headedness, blurry vision, and he feels disconnected with reality when he gets the migraines." I experience all of these and then some. I know just how he feels. He is not alone. We are out here. There is a facebook group for Hemiplegic migraineurs. You should look it up and join and get some info and meet even more people with HM.

Well I have tried many meds. I am not sure if he has tried these:
Namenda
Lyrica (I haven’t tried this yet but I may in the near future)
Acetazolamizde (I see you are taking something similar
Nortripltyline
Neurontin
Amitriptyline

I am currently take:
Topamax 325mg (this drug has really helped me a lot throughout this whole illness. It was the only that took my symptoms away completely for a while and since I have been bumping up the dosage I have been feeling better. My doctor says she goes as high as 800mg. 0.0! Yeah I know, I hope I don’t even have to go that high)

Verapamil 360mg

Abortives I am currently taking are:

Diclofenac POTASSIUM

Flexaril

Tylenol 3 (Neurologist are reluctant to prescribe narcotics. I was told because of rebound headache, these drugs change the way the brain preceives pain, and I guess because of addiction. But I don’t care!! Some of these doctors must think migraineurs are playing or they (the doctors) don’t understand what it means to be in pain. When your heads is hurting You can’t function right. It would be a little bit easier if it was some other part of the body, but if its in your head. NO!!.
Tylenol 3 is a weak narc and if I am in a lot of pain dclofenac is not going to work and I need something stronger. So I get this from my primary care doctor if they are not willing to prescribe it).

Other abortives I have taken are

Tramadol (I think this is contraindicated with verapamil so I stopped taking it once I started taking Verapmil)

Vicodin (not frequently only when migraine was really severe) ( I was taking this for another condition but when I was put on Diclofenac Potassium regularly. I no longer need the vicodin (which I took once a month for severe cramps. Tylenol 3 takes care of whatever residual Headache or cramp pain diclofenac doesn’t handle.

Flubiprofen

As for foods I stay away from things like caffeine (rebound headache) All nuts (especially Peanuts I found out that it is a very big trigger for migraines (esp mine), cheese, processed foods, beans (esp. Kidney beans black beans seem to be okay for me), No more Corn and I try to stay gluten free that one is quite hard :-/. I try to stay very hydrated. I tdrink almost 2 gallons a day because of all the meds I take. Especially that Topamax.


Other drug therapies/Alternative therpay

Has he tried botox and accupuncture?


I have also tried Prednisone, IV steroids to break this migraine cycle. Nothing has completely stopped them. Topamax has helped make them less frequent and intense. It has been 4 years now. Good luck with everything.

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 6/15/2012 3:45 PM (GMT -6)   
Oh yes and NO TRIPTANS. I took A TRIPTAN ONCE after a doctor who thought I had somatoform disorder prescribed it for me. To make a long story short. She nearly killed me. The only thing that stopped me from ending up in the hospital was the dislike of hospitals, ERs and doctors that had formed ever since this disease process had started. A dislike and distrust that was honed from being told I needed to see a psychiatrist, just stressed out, needed to walk it off. I could have died in the house though from a stroke. Full right-sided paralysis 15-20 minutes after taking that medication, lose of consciousness in less than 25. ... It is a crap shoot with those triptans with people like us. Be careful!!

dd wallace
New Member


Date Joined May 2014
Total Posts : 2
   Posted 5/5/2014 2:33 PM (GMT -6)   
I have had Hemiplegic Migraines for over 40 years. It has been rough. I thought I was alone until I read these posts below. Can you believe after 40 years I have never heard of anyone else having these? Doctors are still baffled. I have kept records for years of what I eat and nothing has ever triggered them except chocolate and caffeine. I was diagnosed with Scleroderma about 5 years ago. This auto immune disease is what causes the hemiplegic migraines I was told. I had a GP who was so caring and listened to me. I told him I have nausea, pain in my head and I told him about the numbness on my left side only. He wrote me an rx to have compounded. I have been using these for over 30 years and they help greatly. The meds have something for nausea and ergot to open or dilate the blood vessels and something for pain. I will gladly share the names with you all. I have also seen a homeopathic dr who taught me deep breathing exercises to do when they hit out of the blue. You breathe in through your nose and out your mouth, but as you breathe in do it deeply and hold for 6-10 seconds and breathe out that length of time. it really does help. I usually would panic when they'd hit and stop breathing. I noticed this after I learned the deep breathing. You never know how bad they'll be or if you'll be hospitalized. I have been to the ER so many times in my life I can't count. I've stayed almost 2 weeks at times. I have been pumped full of steroids over the years by dr's trying to get my brain swelling to go down. A few years ago after the worst headache because of the steroids my hip balls started to crumble. This is called AVN. I have had both my hips replaced and because of the weakened left side of my body my left leg kind of drags. I tripped on concrete that was raised a little bit above the other cement because my left leg didn't make it up. I fell on my left arm and the ball of my shoulder rotated around completely. I had to have surgery on that arm and now have a permanent plate w/screws in it. This disease is just horrible. I feel for everyone of you out there that has this. Everyone knows the routine when I get one, help me change clothes, turn down the bed and get my meds. if I can get my meds immediately I do much better. OK here's the names of what I take that are mixed together...Ergot/Atropene/phinergin...
these words are abbreviated so i'm not sure I spelled them correctly..in order of the meds it lists the amts
they are 1.2mg/1mg/25mg
the pharmacy I go to has them already made up and they told me they are like peanut butter, they last a long time. I have been taking them many, many years now and they are the only thing that has ever helped me.>EVER...talk to your GP or neurologist about these and see if they will let you try them. I only get like 16 at a time and my GP makes sure I get lots of refills. He's seen me in this state and feels for me.i too feel disoriented when I have them. it has started in my foot when I feel it coming on, it used to be my mouth or tongue. IT moves around how it starts. Also, you can only take one of these in 24 hours. I took 2 about 8 hours apart one time and had hallucinations really bad. I will never do that again. Having a wonderful understanding husband and children sure does help. When it's over with I usually take an Advil or two or three and the headache subsides. I have shared this RX with many migraine sufferers and it hasn't helped, but with hemiplegic migraines which are worse and stronger than anyone elses it works. I also started taking antibiotics...go research- antibiotic protocol. I take them 3 days a week and take 100mg at a time.They are very mild..it's what kids take for acne. IT seems to have helped with the severity, but not how many I have per month etc..I have been on them about 3 years..you have to take them a long time. it has reversed rheumatoid arthritis and in some cases scleroderma.. I think stress brings them on more than food does(at least with me) The older I've gotten the longer it takes me to get over them..one headache takes about a week to feel fairly normal. 2 headaches is 2 weeks and 3-4 over a month. I had 4 in 2 weeks not long ago and i'm just now feeling ok. I can't take the heat either. I feel rotten. I hope I've helped someone out there. Hopefully one day someone will find a cure. I was told that the cartilage that the scleroderma makes attaches to an area of the brain and atrophies it and causes the headaches.I even asked my neuro if they do surgery to remove the cartilage and he said no, you wouldn't want to do that. I told him if it would stop these things and I could be normal like everyone else I would too do it. No one understands unless they have them. Good luck everyone!! DD

dd wallace
New Member


Date Joined May 2014
Total Posts : 2
   Posted 5/5/2014 2:36 PM (GMT -6)   
the numbness is like getting a shot at the dentist before he does a procedure. is this how everyone else feels?
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