Hemiplegic Migraines

[quietsmelody]

Hi I am new the community I have commented on situations that are similar to mine with no response and it could be because I have not just asked a question I have posted comments anyway here is what has been going on, and hopefully someone could give me information or something that might help me because I am really tired of being sick, and more than that I am tried or doctors asking me what to do, rather than telling me whats wrong. So if anyone can suggest or know something that might help I would really appreciate it.

I am at my wits end, to try and be brief as possible this is what has happen thus far, in Jun of this year, I went to see my PCP I told him I had, had a headache for 3 weeks that really would not go away it would ease up with ober the counter meds, but not go completely away, I told him I had also been experiencing dizziness, and nausea he gave me meclizine for vertigo and sent me home. The next day which was the 20th of June I was rushed by ambulance to the hospital for chest pain and numbness, tingling, and weakness to left side, when I reached the hospital, my face had a slight droop on the left side,  and I was no longer able to move my left side, I was then told I had a mild stroke by a well known neurologist, they did CT scans (in total I believe I have had 3or 4 this year), CTA, MRI, echo cardiograms, and the test where they check the arteries in the neck, all came back clear. From that point I was in and out of the hospital the entire summer, I was told I was having TIA's but they couldn't be sure because all my tests were clear. Long story short my PCP referred me to Two neurologists, First one thought it was spinal fluid in my brain due to something he found on the fundus of my left eye, the second one said she thought I was having hemiplegic Migraines, but before that she did an EEG which was clear she started me on Gabapentin which I was given during one of my many hospital stays this summer, bottom line it is not working. At this very moment I am in extreme pain and I am so nauseous its ridiculous. I went to the emergency yesterday, I was given some Dilaudid, which totally had me vomiting for most of the day not to mention drowsy and unstable, and because I have had so many CT scans, I could not get one to make sure that something isn't actually going on other then the Hemipelgic Migraine, ( I wanted  a CT scan  because my mother died from a brain aneurysm, and my brother had a brain aneurysm  at the age of 20 but he survived) So here I am, I am sorry for such a long story but the pressure in my head is starting to worry me, my neck and face burns on the left side,and my head feels like its going to pop. To top it off the Dr. in the emergency yesterday prescribed extra strength Vicodine or hydrocodone, I couldn't get it filled because I was too sick, sent someone to fill it and was told my medical coverage no longer covers it (SMH). So here I am trying to type through the nausea and the head pain. I have read something about Magnesium supplements that could decrease the attacks, but how much or how many milligrams do I have to take and what other info can you give me to help me. Currently the sensation on my left side is not as strong as the right and I walk with a cane when needed due to the fact my leg will get heavy(numb) on the left side if I walk too much. Can you help or give me some more info. With that said I hope to hear from someone thanks, and again I am sorry for the long story I just want answers peace.

quietsmelody

[MakstersMom1130]

My hemiplegic migraines started about three years ago, the first one I was hospitalized because my co-workers at the medical facility I worked with thought I had a stroke. It happened after taking a trip tan for what seemed a classic migraine. I  had left-sided weakness, difficulty speaking, and non-equal pupils.  I had quite q few after that episode and then was diagnosed with a seizure disorder, focal seizures while sleeping, no evidence of them except on EEG and some sclerosis of left temporal lobe showed on MRI. I  tried on so many medications, but none worked and I had a headache for three months. I lost 30 pounds because I couldn't keep any food down. During this time I was also diagnosed with a very small aneurysm on my carotid ophthalmic artery, right side and dilatation of the posterior communicating artery.  Finally my doctor just put me on a large dose of Topamax for both the seizures and migraines and I have only had mild symptoms such as numbness of the left side of my face occasional headaches since then. That has worked better than anything else for me. I take fioricet for the pain which works pretty well live pretty normally. Sorry you are going through this. I know how hard is is. Keep your head up, it will get better.

[1972mom37]

Its amazing to see how many people suffer from something that so few ever hear about.  I know I didnt till I had one myself.  I still experience new things w/ each one.  I am still waiting to see a neuro.  Since I wasnt hospitalized w/ my first one, I didnt see one right away.  I have one appt on Feb 1st and another set up as a back up on the 16th incase the first one gets pushed back again as it has once (or if we want a second opinion).  The last two weeks have been rough w/ near, if not full blown migraines each day.  I went to my primary Friday as no medicine I had was touching it.  He increased my Topamax and basically just shook his head.  I know he just doesnt know what to do to help till I see the neuro.  So I just have to wait it out.

[quietsmelody]

Hi,
Welcome sorry to hear what about what you are going through believe you I know what you are going through all this just stated for me in Jun of 09 I also have children and this has been heck! (wanted to say something else but I am trying not to be bitter smile) anyway as far as what you are seeing no I have not seen that, but I do see spots something that looks a wavy a line ( but here recently I think that is my eyes dancing) yeah that is something new that has been happening to me, my headaches have been so bad that it elevates my blood pressure and my eyes have started moving real fast from side to side, Think about rolling dice in your hand from side to side yep like that. If that is not bad enough depending on the pain, I get what my better half thought to be tremors, it makes me feel like I have Parkinson's disease but once I get my blood pressure down, the shakes stop and my eyes seem to stop as well. Sorry I could not be more of help, but I hope  you get better real soon.


quietsmelody

[StormyRenee]

Hi,
Unfortunatly I too see things that arent there. It has a name somthing like Mouse in the Corner Syndrome.I see floater type things but only in my right eye. They range in size and shape. It happens day or night .I have started to get use to them if thats possible. For me they tend to happen more frequently without an actual headache.In my case these are not silent migraines (aura w/o headache) they are different.You need to call your neurologists and let them know whats going on.
I was initially dx with complicated migraines.But the new neuro feels that my migraines are some sort of migraine varient like Hemaplegic or occular.She also told me that it is common to suffer from multiple types of migraines.I have multiple spots/lesions on my brain.

[1972mom37]

Wow! I wish I had read this before I had posted my question tonight!  I too am suffering what they are telling me was a hemiplegic migraine.  My head hurts daily.  Most days to the point of tears.  The last two weeks have had me pretty much in bed or on couch as the pain has been so unbearable.  I have been waiting since November to see a neurologist and my appointment isnt till February 1st.  It got pushed back cause the dr is on medical leave and it was still quicker to wait to see him than to get a referral to another one.  I do have a back up referral just in case for the middle of February.  I have been on Short Term Disability.  I work around very big and heavy equipment that wouldnt be safe if I was disoriented (which I am to at least some extent alot) or was to suddenly become unstable or such.  I keep hoping another answer is found that easily can be remedied so I can return to life as usual.  I have children ranging from 20 to 2 and while the older ones understand I feel like my condition is robbing the youngest especially.  And I get more depressed as each day passes w/ pain.  My meds dont work and dont seem to take the edge off anymore.  And my fear is becoming addicted to pain medication, so I try to steer clear of them.  But the last few days, I have had to take some that I've had just to endure the pain.  I am starting to feel like a vampire as I cant handle light, especially sunlight.  Even light shining into a room across the house makes my head hurt.  IF for once my head isnt hurting, light makes it start. So outings get painful.  I am calling my dr tomorrow to see if there is anything he can give me that might work better, but I fear he will think I am pill hunting even though I never ask for more.  Its just the pain is getting worse.  Sorry for going on and on but I have felt like I was the only one personally feeling this way.  Now I see I'm not, which is bitter sweet.  While its good to know I'm not alone, I hate knowing others are suffering as I am.  

One question though, has anyone else had 'spells' where they saw things that weren't there?  I have had 3 times (always in middle of night), to which I woke up and saw monsterous spider in my room.  First time, scared me so bad i was bout to push my husband out of bed trying to get away from it.  It wasnt like it was about to get me.  It was crawling into our room on the top of doorway and ceiling.  I kept pointing at it.  My husband thought I was talking about some normal size spider and couldnt see either.  Finally it disappeared.  I thought it was a dream that I wasnt fully awake from till the other two happened.  They werent as bad though.  I dont know if the first two preceded a migraine strength headache as my head does hurt daily.  But I do know that the last one happened the night before this last round of migraines and severe headaches started 2 weeks ago.  Could this be an aura?

[quietsmelody]

Hi, thank you so much for posting a comment to my situation I really appreciate what you had to say, to answer a few of your questions no I have not been put on any preventive meds and as far as doctors, my recent experiences have left me feeling helpless, to me it seems like out of the millions of Doctors that exist, on a handful really still care or have the passion to help you come up with a cure, or something that helps you mange your condition. now days they want to get you in and out of the office and if not that, they want to give you medicine. Believe or not in my last hospital stay in August this year I actually had one of the doctors, tell me that his most powerful tool was his Pen, and he meant that, and due to my naivete, I always thought it was a Doctors, brain, and dedication to his patients that made him the best. So to sum it up here lately that's all I have had, Doctors, that want to medicate instead of educate me about my problem.  You have to remember now days the Doctors and the Pharmaceutical industry work hand and hand.

So if doctors were to do what they take and oath to do, and that is cure us, or at least tell us the things to do to stay well, where would the Pharmaceutical industry  get their revenue from? Anyway I have said enough I will definitely look into the medication you mentioned, more than that I will mention it to the nuerologist I will be seeing in a few weeks. Again I thank you for your well wishes, until next time I bid you peace and blessings.


quietsmelody

[quietsmelody]

Thank you so much for your words I am so sorry that you suffered that long, I am glad that you finally found something that worked but, the side affects sadden me, with me now the left side is what is affected the most, I wake up with my face numb on that side, I have left I walk with a limp because the sensation is not the same anymore, with this last bout or what I am currently going through seems a bit more extreme because now I am feeling tingling feelings on my right side, the headache subsides a bit but never really go away I am due to see neurologist on the 11th I have she comes up with something because this nausea, and constant head ache has had me bedridden since After Christmas right now the pressure in my head and neck, not to mention my stomach upset makes me want to pull out my hair. Oh and lastly having children that don't really get it does not help either (smile) anyway I thank you so much for your words because if nothing else despite of the length of time it took for you, you let me know that, there was hope and for that I thank you so much. Please feel free to write anytime, for it is my goal to post any change that occurs, good or bad, because maybe just maybe someone can tell me something that I can do, that does not involve Doctors experimenting with my health and condition you know? With that said I bid you continued good health.

quietsmelody

[rudyhorse]

Hi,
You sure have been through a lot... so sorry...My migraines can last for weeks/months also.   From your note, I am not sure if they have you on any preventative medication?  Also the medication for acute migraines, do you take anything like Zomig, ect?  Sometimes the ER medications you have been given aren't the best for Migraine.  Is there a good, caring Dr you can consult about preventing this with medication?

Hope this was some help, ---On the Migraineurs support group there are postings about what medications people have found helpful, maybe that would help you also.
Keep us posted and feel free to ask any questions..!!
Tracy

[Donna456]

Hi

I suffered many of the same symptoms you did, including droppiness of face,  speech problems, right side weakness, nausea, tiredness, extreme vertigo. I took 2 years to finally be diagnosed with Hemiplegic migraines. The neurologist put me on Verapamil which is a Calcium channel blocker it took about 8 months to get me on the right dosage and to stabilize but since then ( more than 2 years now) I have not had any symptoms and my life is back to normal. Prior to the medication I was in and out of hospital, getting MRI, CTs etc.... presenting like I had had a stroke over 22 times in 2 years.

The problem with diagnosing hemiplegic migraines is it a diagnosis of exclusion. They can test for it, but only for the hereditary form and it is not covered by medical insurance and it was a few years ago when I had it done $2000 USD. If you have the non hereditary form there is no test.

Even though there is no evidence of strokes on MRIs I have had residual effects such as the right side weakness ( I have lost about 30% of the strength on my right side) and muscle damage in my face (my smile droops so I rarely smile anymore as I am self conscious of it). I was told these symptoms would go away over time but it has been about 4 years since I had a very severe episode that left me hospitalized for a week and a half and off work for 6 weeks and caused the damage that still remains.

If it is indeed hemiplegic migraines and then there is hope that they can get you stabilized on medication and get your life back to normal.

Good luck,

Donna