Hemiplegic Migraine

well. should i start worring now? my 13 yr old daughter came home from school yesterday feeling ok. within one hour she had a headache. then it turned into a migraine. couldn't stand light, then she had me turn off her tv because the noise was bothering her. tylenol didn't help so o gave her something s little stronger and she went to sleep. slept all night and i woke her up this morning and she felt fine. she had a little bit of a headache hangover. do you think she will follow in her daddy's foosteps? i,m going to keep a diary about it and see what happens. hope everyone is doing well. have a great weekend! love mimi

Hi everyone!!!  I have had an attack for 2 days now, with my speech gone and trouble walking, and everything going

in slowmotion, however when i woke up this morning i was okey.

I haven´t started with Topimax yet beacuse i am planning a trip 14/5-25/5 to see some relatives i have in Finland.

And i dont want it spoiled by some side effects ( could be that i´m not going to have any but i am not taking that risk)

 

Summer when i was in my 20 i too got Imigran it did´t helped for me either, so my neurologist i had then said that

it couldnt be migraine then beacuse imigran always helps??  ( Stupid doctor ) he thought it was tension related.

When i was younger i only had the headaches ( but today i no that i had aura too, my eyes saw dark things in the room )

I remember that i often asked my mother if she didnt saw some things hopping around in the room? but she told me that

it was only the air that i saw.

 

mimi hope that your daughter will be okey!!!

 

OK bye everyone hope you all to be HM free!!!!

 

Hugs Sweden

I was hospitalized on Oct 2006 for what was to be believed a stroke and another in June 2007 and another in Oct 2008. All tests come back normal. Since my last what my wife and I call episodes in 2008, I can have several episodes a day to not having any for a couple of days. But I now have to wear a brace on my right leg because my foot turns in real bad to where I hit my left foot while walking and also my right hand stays clinched and my whole arm shakes.  I now think I have hemiplegic migraines but the doctors say everything fits except my rightside not going back to normal. It will be a year in Oct and I still haven't got the function of my rightside back. Does anyone else had this or anything similiar?

Hi y'all. I am doing much better than my last post. I still feel clumsy when I walk and I have to concentrate when really carrying on a conversation. But I'm up and about taking care of my kids and driving them to school again. That feels so good to be able to do. I have been reading up on a lot of migraines, not much out there on HM though, and hormones for woman can be a huge trigger. I also read that women who either go thru menopause or have full hysterectomies end up with less migraines due to less hormone fluctuations. I asked my neurologist if we should have another child and he thinks that as long as we monitor me closely and put me back on the meds as soon as the baby is born than it shouldn't be as bad. He also said we should do it now and then I can consider having a hysterectomy soon after birth. I know Im risking more by having another baby, but we want one so badly. Luckily I have a tremendous support team from my husbands family and my friends.

Sweeden to answer your question...yes they have me on Norvasc (calcium channel blocker) and baby aspirin. My kids are 10 yrs old and 11 months old. Hence the reason we want another. We want my son to have a playmate. His almost 11 year old sister is not much fun, LOL. Topamax was never offered, should I suggest it? Are you on more than that?

For those of you men out there with this condition, Im sorry you can't blame hormones. But both my dad and my grandpa have these ridiculous migraines and it does get easier with age. My dad rarely gets them like he used to.

Thank you to everyone who posts here. It makes me feel less alone in this strange migraine world.

Leesa

Post Edited (mtngirl74) : 6/1/2009 10:27:29 AM (GMT-6)

I forgot!!! Calcium channel blockers was the first suggestion for me from my neuro, but i ca´nt take them beacuse i have tried them before
and i got an allergic reaction from them so...thats why, i tried them for my high blood pressure.
So i think that they can help you. Topimax is only helping with my headaches not the aura.

Sweden

Thanks for the info Sweden. I really liked that website it had a lot of good information. Yes mine if FHM. I talked to my great Aunt and she has them too. Interesting about the Lamictal helping for the Aura. The headache is bad and I hate it, but Im more afraid of the aura. I loose my speech, my ability to walk, think, or do anything at all when I have a bad aura. I will take the pain over the aura any day. I will mention the Lamictal to my doc next week. Thank you. Hope you are feeling good and migraine free.

Sorry Summer77, I haven't ever lost my hearing before with my HM. Ive lost my vision, but never my hearing. Sorry to hear you are going thru that. If you can show the research on Hemiplegic Migraines to who ever your medical coverage is, they will clearly understand that it is a debilitating disease at times and shouldn't be covered like all other conditions. Migraines are taken to light hearted in the medical field from those who don't get it or have suffered thru it. I wish you luck. Keep us posted.

Post Edited (mtngirl74) : 6/14/2009 9:15:35 PM (GMT-6)

Hi everyone!!!

Summer 77 i have somewhere read that being deaf in HM attacks is one of the Auras ( I´don´t remember where i read it thou )

but i remember that there was nothing about tinnitus. OK Kala UK Lamictal 400mg are you there yet? and have it helped you?

I take 200mg but my neuro was going for 300mg, the problem was that when i came up to 250 i was soo sleepy, i could´nt stay

awake so much, so we went down to 200 again. People with EP take it up to 700 and sometimes over it too.

 

YYEEESSSS GREAT that you are going to get the ONSI soon, I read that they was testing it in USA this spring, but have´nt  seen

any test results yet. Have they´ve test it in UK already? Or are you in the test group?

 

I started with Topimax but had to stop taking them, beacuse i got side effects from them ( anxiety ) Did i spell that right?

anyway i´m seeing my neuro after the summer so we shall see what he´s giving me next.

 

Hope you ALL to be HM free / Sweden

Hi Sweden,

No I am not up to 400mg on the Lactimal yet. I am on 200mg at the moment and will remain there for a while. I am experiencing side-effects, which include insomnia, low mood, muscle and joint pain, etc. So despite all of that to contend with along with my chronic migraines and SUNA headaches I am going to continue for a while to see if things improve. The thing is my consultant said that it could take up to a year to see if Lactimal was beneficial. So I feel that I have to give it a fair try. However, in the past 10 days I have experienced 2 major attacks, which may also account for some of my extra symptoms, for example, low mood, muscle and joint pain, etc.

With regards to the ONSI in the UK it has not been approved by NICE (the National Institute for Health and Clinical Excellence) so I am assuming I will be part of a study. Also I was told that I will be the first person who suffers from HM to have an ONSI, so that will be interesting to see if it has affect on my aura symptoms. You never know I might even be in a Medical Journal!!

And yes you did spell anxiety correctly, however thumb has an h in it! I hope you don't mind me telling you so?

Kala UK

Hi everyone!!! No i don´t mind at all that you correct me  Kala Uk , it´s  good for me to write in english and get a little practice

It´s  been over 20 years sice i wrote something in english so..... ( it was in the school )!!!

I am so sorry that you have theese side effects and yes you are right could be that some of them are related to your major attacks.

YES i hope that i some day see a medical Journal where they´ve written about you and your test with the ONSI ( HI HI )

 

But i sure hope you will keep us updated here as you go along  using the ONSI too?!

 

I have been feeling really great for the past month, of course headaches many times a week but not so bad ones ( Zomig and codein tabs )

did the tricks for me, and havent had any attacks for a month now so.........yyiipppiiie!!

hmm maybe i should lay a little low with that so i don´t get one soon, but i am soo happy, this is the longest time for me being without

any attacks.

 

Mountaingirl you can google on SUNA headache and on ONSI too there is much to read!!!!

 

Hope  you all will be feeling so good as possible!!!

 

With love / Sweden

Bongobear,

During the years that you have had the hemiplegic migraines, have the doctors been testing your prolactin, estrogen, and progesterone (I think that's the correct spelling).  The way I understand these can effect you with migraines.  My daughter has an ovarian cyst and her level was off, and they're having her go back in to check the levels again.  It seems like a lot of people that have these hemiplegic migraines have it get better or worse around the time of having their baby or around menopause.  A friend of mine had the passing out and seizures, and it all stopped after she had her first baby.  If this was the problem with you also, there is a cream I've heard of with the estrogen or progesterone but I don't know all the details on it (somebody told me a little about it).  My daughter still has the weakness a lot and siezures, but knock on wood not as much with the hemiplegic migraines as she used to.  Hopefully, it will stay that way and continue to get better.  I hope it does get better for you.

God bless you.

Vickabee 

Hello to all those suffering from FHM. I am new to this post and quite honestly have never participated in any type of posts before. I am thankful for having found the wonderful group of people here that have been so kind to tell all of their experiences. Since May of 2008, I have been suffering from strange episodes of weakness, headaches, neck and shoulder pain and dizziness to name a few. It has affected my life significantly. I do have a history of Meniere’s, hearing deficits, asthma, headaches. Before my illness, I was very independent and quite active. I worked full time in and outside of the home. It was a very busy life. You don’t know what you miss until it has been taken away from you. All that was taken away on May 2008.

I believe my symptoms started before then, but I ignored it and just put up with it. I was at the office and just came back from walking, when I started having chest discomfort and numbness to my face and left arm and leg. They called the ambulance, thinking that it may be cardiac related. In the ER I kept telling everyone that I had difficulty taking deep breathes, but I was not short of breath.) Later on, I discovered that it was the nerves and muscles that were affecting my chest arms, legs and face.) I went back to work, but I knew that I was too weak to continue. I then took short term disability and eventually LTD. Thus started the many visits to multiple doctors, endless tests, blood work, physical therapy, medications etc. etc. Meanwhile, I was researching possible diagnosis that I may have on my own. I switched primary physicians quickly when all they were doing was to try and diagnose me with depression. It was the most difficult thing having people not believe you.

Thankfully, I was blessed with a supportive family and strong and wonderful husband. There was much doubt that I encountered in the medical community-it was so frustrating. There were many times though that the illness can bring you down. You want to move but you just can’t. Finally, I found a wonderful team of doctors that understood what was going on. It took almost a year before they diagnosed me with FHM through genetic testing. I was not crazy, I really did have an actual diagnosis! I am on medication to try to decrease the episodes and decrease the severity of the symptoms. I have used a cane a walker and a wheelchair and an AFO boot to my left leg this past year. My retirement has been exhausted, we have had to ask our parents for assistance, my husband became unemployed, and my mother in law passed away all this past year. We applied for assistance at the hospital that diagnosed me and thankfully they were able to decrease our cost. We continue to make payments on medical expenses. This was definitely one of the hardest years of our lives. But we are thankful for a diagnosis and I am thankful for the support of my doctors who continue to help me through this and have also helped me to obtain disability and most of all I am thankful for the support of my family. I continue to have episodes and have difficulty walking even on my good days. The hardest thing for me I think is the transition from what I was before to how I am now. Thanks for reading such a long letter. God Bless all of you and thanks again for this wonderful support.

Thanks for the reply Sweden. I am trying to look through these forums to see what triggers everyone's episodes. What are yours? I have quite a bit of triggers. Menstrual cycle and weather are big ones. Has anyone found a way to decrease their symptoms during their menses?
Thanks and best regards,
Dizzyme

Hi everyone.  I've never posted on a site like this before...but i'm feel like i'm losing my mind....and my husband's the one w/ the hm's.   they began when he was 13, but have gotten extremely severe in the past 2 years.   a month before our wedding, he was rushed from work (he works in a jail) by ambulance. originally the docs said anxiety attack...then they realized the confusion and right sided weakness...said TIA, but couldnt figure out why an active, only slightly overweight 32 year old would possibly be having a TIA. I thank the Lord every day we had an ER doc who had no idea either, so she ordered every test under the sun... CT, EEG, ECG, EKG, TEE, MRI, and every blood test she could think of.  that is what led us to our first lead.  He tested postive for Factor V Leiden (one bad genetic copy, called heterozygote).  it's way more common than we originally thought 3-8% of the caucasian population...turns out we've since found out i have the same genetic condition. it causes people to clot 5X longer than others and places them at a 2-5X risk of stroke, DVT, or pulmonary embolism. we left the hospital with his right side very weak and a day later he lost ALL ability to speak.  a month before our wedding i thought my fiance had a stroke.  turns out we now know it was a HM w/ prolonged symptoms (4 months).  we met w/ a genetic counselor today.  our kids someday (haven't tried conceiving yet due to his health issues) will have a 50% of HM. and each kid w/ have a 50% Factor V Leiden (1bad copy,1good), 25% (2 bad copies= 50-80 times the risk for stroke, DVT, pulmonary embolism), and 25% (2 good copies)... Bottom line... my worst fear it there's a 12.5% chance w/ each child our kids have HM and get 2 bad copies of Factor V Leiden, placing them at huge risk for stroke, DVT, etc. AND guranteed strike-like symptoms from the HM.  i'm trying to focus on the other end of the spectrum (12.5% w/ each child of NOTHING WRONG).

 

i know i'm rambling, but i do so for a reason...we've learned a few things along the way and i'd love if someone was able to learn from our mistakes/experience.  anyhow... now we can't get life insurance even though it violates federal law to discriminate based upon genetic condition.  soooo....if any of you are considering genetic testing for HM's,  i'd advise getting all healtcare/AFLAC stuff in order FIRST!!!!!!

 

they put him on Coumadin, a risky blood thinner,  especially for a man working in a jai. if he were to get hurt, he may not make it to the hospital before dying!!! (still thinking he'd had a stroke, but couldn't find it on MRI)

 

we finally got in w/ the local neuro 7 months later.  she asked to see original MRI's.  saw no sign of stroke and said symptoms couldnt have been due to TIA due to sypmtoms resolving w/in 24hrs.  ordered another MRI.  Guess what?? You guessed it, no stroke.  said "atypical migraine" which only served to TICK ME OFF!!! but it did fuel my quest to get answers.  googled "atypical migraine" and found HM's on on healthcentral.com  at least the local neuro realized she was in uncharted territory and referred us to University of Washington Neuro Headache Clinic.   that was 3 months ago.

 

Seattle Neuro took him of Coumadin (no need),  maintained Verapamil, and added Topamax.  my husband's 6'1" and she was good to add it slowly (25mg increase/week).  by 125mg, my husband was loosing ALL SHORT TERM MEMORY IN THE EVENINGS! VERY SCARY.  AT LEAST WHEN HIS RIGHT SIDE AND SPEECH WENT OUT, HE WAS AWARE.  THIS, HE DOESNT EVEN KNOW IT'S HAPPENING!!! DID I MENTION HE WORKS IN A JAIL.... SCARY!!! I have been able to check on him at work.  what seems to be happening is that he knows he HAS TO be ok at work, so he is, but then he gets home and does a nightly "crash and burn" routine.  as his wife, it is soooo scary.  i dont' know whether to keep up w/ Topamax or begin the taper off.   we've saw the doc 2 weeks ago and she backed him off to 100mg.  now the migraines are coming back and short term memory is still going to crap every night. 

 

How many of you have had short term memory loss w/ topamax? 

 

i've read some people dont recover from this even after getting off the med (webmd.com).  we're considering a career change, but jobs are so hard to find. 

 

Also, how many people have a hard time w/ florecent lights w/ or w/o the Topamax? what do you do to deal w/ this? 

 

I am praying for all of you and would love any additional prayers for my husband and I. 

God Bless!

I promise to keep it shorter next time....