Hemiplegic Migraine

Hi

My names is Darren and my partner has been diagnosed with suffering from a hemiplegic migraine by here neurologist.

 

I have read books and searched the internet a to try and understand this type of migraine and how to "cope" with it.

I'll try and explain what here symtoms where/are to see what you guys think.

Last June she was leaving the house,walking down the path and "BOOM" her jaw dropped,speech started to slur,weakess in her lower left hand leg.

The clinic is only a 5-10 min drive away but on arrival she was completly paralysed down the left hand side of here whole body and couldn't talk.

First thoughts of her doctor at the clinic was that she was having a mini-stroke (TIA)

Once in A&E a cardio doctor was ask to take examine her and a TIA was ruled out because of her age (28) and that she didnt lead a lifestyle that would accustom this type of stroke to happen at such an early age.

This paralysis lasted for about an 1 and a half,which at this stage they had admitted her to hospital.

Whilst in hospital she had another attack and was sent straight for a CT scan to check for a TIA,which came back clear.

She was seen by a neurologist who carried out various tests including a MRI and it also came back clear and diagnosed her with having a "hemiplegic migraine with an aura" and put her on inderol (beta blockers) + Aspirin.Which he decrease of the rest of the year as he didnt like her staying on the beat blockers with her being so young.

Over the period from June to December 07 she had taken a further 3 of these attacks all leaving her with the same paralysis,although her full motor skills do return once she starts to come out of it.The attacks have never been more than 3/4 hr but leaves her with a sore leg.

Now the thing is since 13th Jan this year to today she has taken 9 of these attacks,all with the same symtoms and lasts for anything up too 3/4 hr.She was readmitted to hospital for a couple of days for observation and seen the neurologist again at which time he put her onto topomax 25mg a day to start her off.

Is this a good medication ?

Now that was on the 15/01/08 and since then the attacks have been coming 2-3 times a days and is really starting to scare me never mind her + plus the fact that most of the time she doesnt have a sore head but after it is sore and just tonite she said it felt as if their was like a pressure pain at the back of her head which has got the alarm bells ringing in my head.

hemiplegic migraine  symtoms seems to me to cover a lot of other conditions like tumors MS,things like and th more i seem to read the more it becomes worse.

Sorry for it being a bit long winded but thats basically it in a nut shell.

thanks for replying or reading it.

What im really asking is that does anyone else have this type of migraine and is this the way it effects people or do we need to start pushing for more tests to be done as they are coming to qquick and too often. 

Hi - I'm sorry to hear about the hemiplegic migraine attacks. I suffer from them as well, and her story sounds very similar to mine. I was 29 when I had my first attack. The whole right side of my body went paralyzed, I was taken to the hospital where they diagnosed me with a TIA and released me. Same thing happened the next day and I was taken back and admitted to run a battery of tests of me. I had multiple MRI/MRAs, EKG, EEG, ECG and tons of blood work. Everything came back normal. I was also put on daily aspirin and topamax. Eventually my pcp suspected hemiplegic migraines and referred me to a neurologist who specialized in migraines. I thought this diagnosis to be extremely odd since I had never had a headache migraine in my life.

I had journaled my episodes over the few months between the first one and my appt with the neurologist. After her exam she said I had classic hemiplegic migraine and the paralysis was the aura. She said later in life I may start to get the headaches after the episodes, but hopefully not. She took me off the topamax and put me on verapamil, which is a blood pressure medication. I can't tell you how wonderful that pill is! I hated the topamax, I had awful side effects and it didn't stop the episodes anyway. I got to the point where I was having them daily. The paralysis would usually last about 10 minutes and then for the next hour I just wouldn't feel right and my right side was weak. Occasionally the attacks would cause aphasic-like symptoms where I would have trouble talking or writing (i.e., I would try to say a word but something different would come out)

I started taking verapamil in August of 2006 and have not had an episode of paralysis since. I still get episodes occasionally, but now they are extremely mild and I can go through them without anyone even knowing. Now my right cheek just gets partially numb and my right arm a bit heavy. I have also completely cut out caffeine, which I found to be my trigger. As long as I stay clear of caffeine, I don't have episodes.

To answer your question, I wouldn't push for more tests, but I would certainly consider asking about getting off the topamax and getting on something like verapamil. My neurologist said that is the first medicine she puts hemiplegic migraine sufferers on because of the success she's had with it. I wouldn't be concerned with tumors or MS if she has had MRIs. That would show up on the films and those who read the scans no doubt were looking for those conditions. Have you seen a neurologist who specializes in migraines? Maybe get a second opinion of another neurologist, especially since the medicine she's on is not working for her.

Please feel free to email me at [email protected] if you have any other questions. I definitely feel for you guys. I know how scary it is.

Cathy

I have had hemiplegic migraines since I was 26 -1st they lasted seconds, my worst last about 12 hours affected my entire left side, including my speech and my ability to think clearly. I could open a magnetic plastic sliding door. The docs in the ER that time thought stroke, although my 15 yr old son tried to tell them it was a migraine- Tests proved he was right. It has taken years of different meds and combination of meds to control mine. Now at 53, stress will still cause them and altho I have had a complete hysterectory, whenever it is the middle of my month - I still get slight problems with my right arm or leg. I take Fiorinal to control or stop it. If your partner is birth control - stop it, they make them worse. Topomax is a good drug for me. Inderal may work, but it causes weight gain and SEVERE BIRTH DEFECTS. I was on Verapmil- now I am off of it didn't work for me. Keep trying to find the right med or combination of meds. I take several different blood pressure meds, so a combination of different drugs may work.

Please feel free to email me if you want more in or just to talk I know that these are scary - but from what I have gathered they are not dangerous once you learn the warning signals. I carry my cell phone with me at all times. I take the fiorinal at the first sign of one of these - Fiorinal "is an older class of drugs but it works wonders - it takes about 40 minutes to work, but it works.
The first doctor explained to me that reason most women get them is that "we release too many hormones, too fast". I thought that at first I was going crazy. He told me if I was, then a lot of other women were too. It was nice to find a Doc who understood...
Hang in there..Linda


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Post Edited By Moderator (Annuk) : 4/26/2008 3:18:18 PM (GMT-6)

Hello, I know all the effects of hemiplegic migraine can be scarey I was diagnosed in 2004 at 36 and at first they thouht it was alot of different things like tumor, MS, Parkinsons, my symptoms were so eradic that they sent me to the MAYO Clinic, that is where they were able to put my symptoms together and diagnose me. I'm on Topomax aspirin and a BiPAP machine at night because they found out when I go to sleep my brain shuts off my breathing for unsafe amounts of time, It's called central Apnea. I've found that the best defense in this hemiplegic migraine world, is to have the same routine daily of everything diet, sleep, and even stress levels if you can control them at all. Don't change any of these if possible it really does help. Sorry for the diagnosis, but it gets easier when you just except it and don't fight the fact that it will be apart of your life. BUT NOT THE WINNER.

hi

sorry to hear your girlfriend having a bad time but hang on in there take a tip dont delve too deep scary stuff on net get a good neurologist or migraine specialist and with the right medication they can become not as severe. ive had them for the past 3 yrs and yes they are scary. i thought id got mine sussed then after my yearly mot got low blood count so off the 600mg aspirin and bang back to square one attack everyday really low at  momment but as my son said mam its not permanent some people have no legs at all out of the mouths of babes eh. so ive made an effort to count my blessing and get on with it.

as an update ive been told to ask for a bloodtest for hughes syndrom apparantly it has the same symtoms as hemiplegic migraines plus some other i also get its realitively unknown there is info on the net goggle the name.

hope things have improved.

 

 

Just another quick note,
I spent years going through testing for all other possible diseases.
2 spinal taps for MS - tested from Myathenia Gravis, in hospital numerous times for possible brain turmors or TIA and heart attacks. Always came up - No problem identifies. We know something is wrong- Go home and don't worry about it. - Welol that was always a bloody helpful thing to tell me..

I was lucky to get assigned this neurologist when I was on my latest hospital visit for a posible TIA when I had an attack and fell down at the library. They took me to a hospital where my regualar neurologist was not on staff. My lucky day. This guy had the idea as soon as he heard my long drawn out story, which usually just makes Dr's roll their eyes, like I am some nut case.

He put me on Topamax, It has made me a bit blurrier then I would like and I will back off a bit, as soon as I get off all the anti seizure medicines I was taking... for no good reason.
On Friday I will see My Family Doctor who the Neuro is suggesting put me on the verapamil for my blood pressure in stead of what I am on. This seems from the above notes to be a good plan of attack.

Again, I am so glad to have found this little group. I know there are not that many of us so it is one of those areas where the internet can make such a big difference. Thanks for being around folks.

Tanna,

I can relate that exercise has really helped me. This spring I really started exercising to get myself back into physical condition. I, also, had a left shoulder laproscopy to remove a bunch of yuck so my shoulder would work better. The PT really helped me to get moving. After the PT for the shoulder I explained th the therapist why my right side was atrophied from the years of what I now know is migraine reactions. He thought he could help me and neruo agreed and wrote me a script. I am so lucky to have finally found a wonderful neurologist. (It is about my 10 neurologist - so keep looking until you get one who will treat you correctly!)

I had to quit exercising, because I neede my gall bladder removed which was done this week. Between the surgery and the lack of exercise. I have had aura symptomes this morning. I honestly think it is more from the lack of exercise.  So I would say keep up the exercise!

Unfortunately, your feeling about driving is probably correct. I voluntarily took myself off the road about 10 years ago. It is a terribly dificult decision, but if you are feeling uncomfortable about your driving then you should not be. It is very difficult to quit driving, But betterr to quit before an accident then after one, especially if you have children in your car. Talk to your husband and neighbors and see what you can work out for rides and car pools. I know it is very hard. I still have trouble saying I need help...

Glad you found the board, sorry you need it.

Not a lot of chatting here. When I found it, it was just so nice to no I was not the only one with the problem.

I had a great summer for the first time in years. No I am not all better, but was much more managable. It really is something you can learn to live with, especially if you were like me and thinking you had a brain tumor.

I have gone off the topamax, as it was not particularly helpful to me either. I recently had a set back, when I had a sleep study done. As soon as they attached the "thingy" behind my ear, my leg started hurting. Now my face is in a flare up and my leg, which has not hurt for months is hurting again. At least I have a very specific cause this time and perhaps it will help when I see the Dr. this week.

For years I complained that taking a shower gave me. Post Shower Syndrome. Everyone always acted like that was crazy. But now this is dramatic proof that the outside scalp on my head is sensitive and can set me off.

All these things are different for each of us and we have to become our own observers. Keep a little journal and it might help you pin things down. I, also, have a reaction from riding in a car with the window open. I think again it is because my scalp nerves are very sensitive for some reason.

Good luck with your Dr. visit and do come back and post. I think there may be another chat location, if I find it I will post it here, so you can find it.

I'm sorry to hear about others with Hemiplegic migraines. My family has dealt with them all my life so it is comforting to know what they are at least. My grandfather, father, aunts and uncles, cousins, brother, myself and one of my daughter's get these.

My family was actually part of a study from the Netherlands group that identified the chromosome that is affected. They also found that approximately 1 in 3 offspring are affected with familial hemiplegic migraine (FHM) if there parent has this abnormality on the 19th chromosome.

My symptoms are similar in that I do have an aura, loss of vision, hearing and then paralysis. I have had some swallowing difficulties with the last couple of episodes. The headaches are excruciating and symptoms seem to be lasting a little bit longer. I find that I am extremely tired, have word finding difficulties, and am in a fog for days. Fortunately, mine are not that frequent. I did go for 12 years with out one. They have increased recently to once a month for the last 3 months. I am 47 and wish I could say they would end with menopause but my aunts who are older continue to battle these.

My neurologist, in consultation with a neurologist from Mayo Clinic, has started me on Diamox on a daily basis. Hopefully this will help decrease the frequency and severity of the episodes. My father and daughter have both been on this drug in the past so it's worth a try.

While the aura, paralysis, and headache are difficult, the uncertainty and fear that I will get one of these when I'm out and about is the biggest challenge to me. I do wear a medical alert necklace and carry a cell phone everywhere. I usually have less than a minute before I lose my ability to walk. A little bit longer for speech but confusion sets in pretty quickly. I've never been driving when I've gotten one of these but my dad and my daughter have been behind the wheel at the onset.

Hopefully, my info will help someone else.
Best of luck to all of you.

I'm wondering if any of you guys have ever tried intravenous magnesium for Migraine. I started getting them in Jan 06 from encephalopathy, and though they did not continue with such intensity once I'd gotten through the acute phase of the infection, they have never stopped.

In May of this year I found found an ND who tried intravenous magnesium sulfate and not only did the Migraine I was suffering at the time completely stop within about 20 minutes, but the frequency, severity, and duration of my Migraine symptomss dropped noticeably for about the next week to ten days.  I'd love to get them regularly, but I have to pay out-of-pocket for that procedure and I just can't afford it in addition to my other medical expenses.

BongoBear said...
Dear Gma, Thank you so very much for responding to my note. I am actually having a pretty good day! I have only had a regular migrain with no left side paralasis today. So I painted a picture of golden aspens from our beautiful Sandia mountains near Albuquerque where I live. I am a retired art teacher. I had to retire this year because of my severe attacks. Yesterday I saw my doctor and she prescribed the blood pressure meds that were recommended on this site. I sure hope they work. I have been afraid to go on a walk in my neighborhood for about nine months, but if I feel this good tomorrow I might give it a try.They thought I too might have a brain tumor in February as I have a walnut sized cyst in my brain. Next week they will re MRI it, but this seems like the more likely disorder. I too had a sleep test in September, I will get the results soon. They are also going to do the video three day in hospital eeg test. At least I now feel I have doctors working for me. I was on a different health plan and the nuerologist their said it was all my imagination! Yeah, right! This week some of my former art students are coming to visit me, I am hoping we can go out to lunch. Little steps at a time. Good luck to you, Grm, ((((((((((Hugs)))))))))))))Bongo

I am interested to hear the results of the 3 day test. My neurologist would like me to have one, but my insurance will not cover it. I hope you get some helpful information

Fuzzy's_Dad said...
I know I am a bit off topic, but I have heard quite a number of people mention the side effects of topamax and that they couldn't bear taking it. Could someone please tell me about the side effects? I know about the weight loss, as I am now taking 100mg of it a day for my hemiplegic migraine. Are there some more things I should be aware of?

I am going to end this post here. My mind is still jumbled. I was hospitalized for 4 days because of my most recent episode and they let me come home, but my mind is not straight yet. I am just happy to find a place where there are people who can understand the condition.

sorry to hear that you are feeling so jumbled. It happens to me after an attack and can take months to calm down.

Topamax was not a big complication issue for me, but just not effective.

Stay tuned. It is good to have a place to hear from others.

Dear friends, I am really doing well! I will be seeing the only migraines nuerologist that spealizes in rare forms of nuerological disorders in Albuquerque in November. But the oxcarbazepineI have been on is working great. But one word of caution. This antiseizure med inacts with the one recommended on this site. When my doc added it I got worse again, so I seached for drug interaction and it turns out the blood pressure med lowered the effectiveness of the antisizer med, so I am back on my old blood pressure med and doing great. With sunglasses on I can even go with my husband to grocery store. Flourescent lights really trigger my spells. After all these years of severe dizziness and the last eleven months of paralysis for up to five hours a day I have now gone many days. I am happy to finishg a complete colored pencil drawing in one dry. I wish you all luck. God's speed, Lo0ve and hugs, Bongo