Hemiplegic Migraine
 

Hi...I was just diagnosed with Hemiplegic Migraines. Does anyone else suffer from them? How often do you get them? Are you on preventative meds...and what kind? Any symptoms from them? Also...what do you do when you have one of the hemiplegic migraines come on strong that won't go away? Do you go to the ER every time?

Thanks!

I have Spordic Hemiplegic Mirgrains and my neruo.doctor has told me I am the most severe case he has ever seen and he is the best neruo.doctor where I live. I take over 20 meds a day and night. Most of the time they dont work and also dont know why. I have been admitted 5 times in 6 months and been treated numerous times in the ER and discharged after I get loaded with pain meds. I now have to go to Gainsville,Florida,which is a 8hr. drive one way. The best thing I can tell you is to really educate yourself about this type of migrain,also educate yourself about what your meds. are.Pay close attention to the symptoms and let the treating phsycian at the ER know that you have this type of migraine so they can treat it right. Educate your family and friends so they will know what to do. Remember ever case is different. Good Luck!!
Single mom of four

I was diagnosed in July of last year with hemi's. I thought I was having a stroke the first time. I've found heat\weather is a trigger for mine. I have been on a few preventive meds, most with impossible side effects. I've only had a few severe episodes where the meds didn't help. I have only gone to the ER for the first one. I take imetrex as a rescue med, though I prefer the dissolving Maxalt pills ( I can't afford the maxalt because my insurance is to tight to cover it. $300 for 10 pills.) I avoid driving when I can't get the numbness to go away. I've been told that this type of migraine can last hours into days.
Brie

Both hemiplegic migraines and basilar
 

Hello to all!! I am newly diagnosed. I'm looking for a support group that actually talk to each other. I have had 8 episodes in a short amount of time. I have gone to the er almost every time. I was wondering if any of you have lesions on your brain? I do. They can't explain that either. They also think I may be having seizures. Anyone have seizures? I am waiting on genetic testing to find out if it is familia or sporadic. Each of those are genetic mutations. I read alot about this since practically being disabled. I just had one two days ago. I'm fed up. I feel like I don't get alot of answers from my neuro. I'm on verapamil 120 mg two times a day and its not working. I need you guys to answer those questions it might help me. By the way , I never get headaches and I don't feel pain only in my limbs after my face, arm, and leg go paralyzed, then the next few days I'm beat up and in pain on my right side. I have almost no short term memory.

Fed up help
 

I had another last night it came on so quick, my husband had to help me walk, I could barley talk. All limbs were weak and I could barley shuffle my legs around with the help of husband. I kept losing consciousness. He laid me on the couch. I thought I was going to die. I'm already on verapamil nothing is working....anyone else got similar symptoms?

You can do it
 

I had these as a child and they recently came back at 38. Genetic test confirmed a CACNA1A C to G transversion recently. Here's what has helped. Verapamil made me sick but stopped the headaches cold. Acetizolamide helped with fatigue and weakness to a point. I'm now off everything. Tight diet is a MUST. Only whole veggies, fruits, whole grains, natural meats, egg whites (I'm off nuts, beans, gluten, citrus, hydrolyzed proteins/MSG, dairy). All junk/processed food and binge eating/lots of carbs sets me off. Flights set me off. Moderate exercise, especially HIT cardio and weights, is GREAT. Long/slow cardio sets me off. NO alcohol. Light caffeine. Solid sleep. Butterbur, Magnesium may help. Daily breaks, routine and meditation help. Good luck! Read EVERYTHING on the internet. Lots of great info. You WILL fight through this.

Hello

I too suffer from hemiplegic migraines. I have had them since 1990 after having neurosurgery for epilepsy. i currently take neurontin but I have not noticed much improvement. The paralysis is getting worse than the headache itself. I was advised once not to take Imigram or Maxalt for this type of migraine.

Jayne

hi penelopickle
Yes I do have lesions my brain found in the first MRI of brain they did. It said it was demyelinating lesions, but the doctors never realy have told me the cause other than that they looked suspecious for MS. So I was sent to a MS neurologist, I have seen him twice, they repeated the MRI every 6 months, but so far no sure diagnosis for the lesions I am going to have a spinal tap in 3 weeks after the Plavix gets out of my system.
But I have terrible neuropathy with a lot of pain. so I am being treated for that without really knowing the reason. We are checking for autoimmune disorder. Have one, vasculitis.
As far as the migrane goes, it is like the Ice Pick type migrane. It comes on, very sharp stabbing pain, and it moves around a little bit, but usually stays in one area, like in one side of the head. If I have it, it usualy comes and goed for a few hours of the day, and it can be there a week or so. Then it will dissapear for weeks.

read up on celiac disease. and make sure you are getting enough magnesium,

Yes, I do. I've had hemiplegic migraines since I was a kid, but they stopped during my teen years until last october. We're still trying to figure out the damage to my gait at 21 years old. I'm in the process of regulating my diet and medications to prevent any more attacks. I was already dealing with nasty neuropathy with tramadol, but I'm looking to discuss a different medication for pain. The migraine itself is usually quite ice-picky in the temple, kind of like someone taps one into my skull periodically along with a dull ache on same side and back of neck/shoulder. Usually last about a day and a half of the main migraine pain, then my head will ache dully for another 5 days to a week. Lots of mini headaches in between, too.

Hemiplegic Migraine 16 years Suvivor
 

Hello Tinymom,

Step back and take a deep breath. I had my first attack in Jan. 1998 at the age of 50 and after retiring in the prior September. I thought it was a stroke, as did the medical people, slurred speech, complete left side paralysis, drooping eye sensitive to the light. I was admitted to the hospital and all the test were ran, MRI, CT Scan, ultrasound of the arteries in my neck, and check of the chambers in my heart. Thus began a saga of going to the neurologists every other week. I was having an episode ever week. One day I'd have the episode, the second day I'd have extremely sore eyes and fatigue and on day 3 I'd be physically weak. I recorded a diary of what I eat every meal and how I felt every day for a year. I was tried on every med regiment you could think of. When the neurologist said he was changing my meds and starting me back onto what I had started with the first time, I said enough and changed neurologists. Six months into this neurologist's treatment, he was relocating and referred me to Vanderbilt Hospital. A wonderful lady doctor was there from Cleveland Headache Clinic conducting migraine studies. She had seen my files earlier and told me that I had migraine with stroke symptom aura. So I am on Aggrenox, Depakote generic, Propanol, and Anytriplene. I've had no specific name for my migraine until Monday, November 3, 2014 ... yep it's Hemiplegic Migraine! The frequency of episodes has changed to about 3/month and the severity has diminished. My doctors say I will most likely have this the rest of my life but I can live with it and nothing prevents an episode but the meds lessen them greatly. So Tinymom hang in there, you can adjust and I was told that most people that have them at an early age can have them go away just like they started but when the onset is later in life like mine, they're here to stay. God Bless and stay strong!

Welcome tactical. :Wave-Hello:

I'm a 36 year old woman who suffer from Hemoplegic Migraines. I was just diagnosed March of this year. I had known something was wrong with me for a very long time, but the doctors couldn't find anything. Till one day I lost my short term memory, one side of my body went numb, I couldn't form sentences or talk correctly, and I couldn't walk straight! One ER doctor that was new to the area, seen me, and he diagnosed me with these rare type of migraines. I am now not able to work anymore, have taken PT to try and retrain my brain, which didn't work! I see a neurologist, which is trying different types of meds that either give little or no relief. I need a specialist here in NC that knows about Hemoplegic Migraines, if anyone has any ideas please let me know! I am currently trying for Disability, also if anyone has any ideas to help me please let me know!