hemiplegic migraine

Sanddancer,

I had a slight hemiplegic migraine attack in March 2012 lasting 4 hours then a severe one in August 2012 which took three weeks to get under control. With my second migraine I found even the consulting neurologist at the first hospital could not manage my pain after 10 days. He referred me to an amazing neurologist specialist named Jacque Joubert at the Epworth Hospital in Melbourne. He has researched migraines, written articles and knew exactly how to manage my migraine. It is now three years later, I have been on minimal medication 600mg Epilim and 10mg Allegron and have had a normal life. I work full time successfully in education, exercise, and enjoy life. Perhaps you can get your neurologist to contact Jacques. You are right though barely any Neurologist or GP in Melbourne knew of this condition or how to manage it.

Joan

Hi

I have just had what my Dr thinks is a Hemiplegic Migraine. On Wednesday I was driving and felt a weird sensation up my spinal cord and then felt extreme pressure around my eye and at the base of my skull, blurred vision and my face and neck on the left side went numb. I was actually in at the hospice with my grandfather when this all happened (I was driving there when I had the weird sensation). I was made to have CT scans as the Drs were convinced I was having a stroke but nothing showed up so they have put it down to this and we are investigating further. Its been nearly 5 days and I still have all the symptoms, have had a dead arm and my vision has turned into tunnel vision in the left eye. From your expereince and everyone else here how long do these migraines usually last, how would you recommend I proceed with looking into treatments or managing into it and is it common for people here to have reoccurances etc? The Drs have given me very little info and I am really wanting to understand whats happening and try to get a handle on it.

Thanks for your replies.

Ive posted what I did to get our of 'migraine hell' here are few times. Worked for me, and I have noticed if I 'slip up' and don't pay attention to my 'migraine triggers' the migraines come back with a vengence, but certainly not as bad as before. I've posted much of the Interviews and research that I've done on youtube at sbkris1.

Hopefully it will be of help to you.

I recently went to A&E with stroke like symptons as my speech was slurred and face droped.I was admitted to hospital where i spent 2 weeks.They done ct and mri scans whilst they tried to work out what was wrong with me.Told me I had masses on the brain.Doctor on the ward told me I had been having strokes and 2 hours later consultant told me it was caused by migraines as he had spoke to nuerolgist about me.

I thought i knew what a migraine was as when i get them i need to go into a dark room ect usual things that most people would do.For about 4 years i was getting pain in my right eye ,bad neck pain ,moderate headaches and real bad tiredness.Put me on proproponal 10 mg which i thought was for blood pressure as it was very high.

He has now taken me off this and put me on 10mg of amitrip

Sent before i finished

I am on 10 mg of amitripyline to be incresed by my own doctor.I have been referred to a memory clinic and discharged with no diagnosis.A lot of the symptons i can relate to headaches,speech slurred,face dropped,memory loss ,dizziness.now i am only in the care of my gp i was wondering how others got a diagnosis

Hello Sanddancer,

I just read you post about having hemiplegic migraines. I am so sorry to hear that you have come down with this neurological disorder. I to have hemiplegic migraines and understand your concern, frustration, and anxiety with the whole experience. Unfortunately when you are in that much pain and try to see a Dr or go to the ER you are often seen as a drug seeker or mentally unstable. Mine are so bad that I have had this migraine for 9 years straight. My normal migraine baseline on a pain scale is 5, what others would call a 20 or the worst migraine or headache they ever had. When mine becomes full blown, the pain is over 100 and often feels like my brain is swelling and it is going to push through my skull at any moment. With mine, I have full blown stroke and meningitis symptoms. I have total loss of the right side, I go blind in my right eye, facial droop with slurred speech and drooling. I am not sensitive to light or sound for the most part, unless light is shined directly in my eye and my senses are heightened to the point I can hear a person breathing 2 rooms over. Nausea comes but normally I don’t throw up. I do however, have severe trouble eating or drinking, often times feeling like my throat is closing. I have been on every medication that is known to man including steroids, beta and calcium channel blockers, anti-seizure, SSRI’s, anti-psychotic, different vitamins including magnesium and B12, and all the triptalines like Neurontin, and all the migraine meds. I often go 5-6 days without sleep because the pain is so bad. Nothing works and since mine are so A Typical and I am at the extreme end of the disorder I am pretty much screwed. I have not had one day without a migraine in 9 years and the only thing I can do for relief is pain meds to cut the severity but I don’t ever go below a 5 and even with the pain meds when they are that bad I am at a 9.5. I am currently in contact with doctors/specialists in Pennsylvania, Maryland, California, Texas, Michigan, Arizona, and I have contacted providers in England, Italy, Germany, Switzerland, and France. As I wait for their call backs, I am not discouraged. Just remember you are not alone. If I hear anything I will let you know. Until then, hang in there and journal when they come on or get worse. By doing that I know that some of my triggers are Vanilla air freshener and perfume, petiole, bug candles, cumin and other Indian spices, strong perfumes and cigars. By doing the journaling, you can look back and see if there is something that is constant and sets off yours so you can stay away. Also, I drink fountain coke when it’s really bad and I am really nauseated. The Coke syrup does help and sometimes caffeine does also even though some doctors will tell you to stay away. Feel free to email me at any time. I hope this helps.

Santina (aka rodsan)

Hello Sanddancer.

I have had Aura (hemiplegic) Migraines since i was a little girl with no explained reason.

My mother use to think it was Gastro, and that de-hydration would bring on a headache but it was the other way around.

Ok so first thing I have to say is that I have read Oliver sachs "Migraine", and highly recommend it.

This is a debilitating condiction that you must MUST keep an eye on.

In 2010 my hemiplegic migraines changed in character and I ignored it.

I started to get memory loss, and the headaches were different. More painful, longer in duration.

It was not until 2013 that the heart murmur was detected.

It is a very distinctive feeling of extreem palpitating followed by paralysis of the body either side, and bells palsy.

I see shapes, flashing lights and colors, sometimes I only have blind spots.

I have had rage episodes as well as sever depression in the hour before it hits.

They have gotten so bad now that my life is plagues with anxiety.

I cant work because they strike any time, all kinds of headaches from ice pick to thunderclap to full blown hemi- migraine.

No Dr has EVER helped me.

I have now taken matters into my own hands, and as it turns out I may have Lyme disease and my chances of heart attack or stroke have surged.

Please find a neurologist and get a CT scan.

These headaches are not normal, don't let anyone tell you that you will be ok.

 

I was diagnosed with hemiplegic migraines 2 years ago. They keep checking for MS because of grandmother passing of ALS and aunt with MS. I always recover from episodes but in the last 5 months recovery time is slow. My vision hasn't fully recovered. I was wondering what you do for the brain pain, I call it?

I am newly suffering with these. Mine starts 2 or 3 days out also. Extreme fatigue, my leg gets a peculiar cramp in a nerve on the inner thigh/groin area, pain behind same leg's knee and the arch of the same side foot. My bladder seems to be affected and outflow is slow almost like a nerve or muscle is blocking the flow. Then I get horrible night sweats. By the third morning waking up to this....the migraines progressed to sight, smell and hearing auras. When i try to walk i have to hold the walls. It is like my brain isnt telling my legs how to walk. There is more. But i wont bore you. I often wonder how many good days i will get in a month. Each episode seems to be closer and longer in duration. I used to the think i was mentally loosing it, or that I had MS or that i was doing something to trigger it. Knowing I am not alone helps. I dont feel quilty with mysrlf anymore when I am no longer Mommas In The Kitchen