hemilplegic migraine

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red1
New Member


Date Joined Jul 2007
Total Posts : 7
   Posted 7/26/2007 3:01 PM (GMT -7)   
hi new here and after advice/help after two yrs they have decided i have hemiplegic migraines i suffered a tia two yrs ago and started with these attacks after i dont get headache just loose different parts of the left side of my body including speak or just totally loose use of the left side of my body and pass out when i wake up totally confused and like this for days it happens often and this latest one scared my son i got up from bed and wallop no use. has been comming n going for days now and is painfull and sad to say is getting to me as i have a weakness to my left side now permanently(been really positive all the way through). my dr is going to try some medication but can i do anything  to help myself? read up loads but say goes when get headache dont get headaches. any help/advice greatly received
thanks

catlou1
New Member


Date Joined Feb 2007
Total Posts : 13
   Posted 7/31/2007 1:47 PM (GMT -7)   
Hi there. Sorry to hear you're suffering from hemiplegic migraines. I was diagnosed with them this time last year. My episodes sound similar to yours. The very first one I had was at work. The entire right side of my body went completely numb. I fell out of my chair and was really confused as to what was happening. After a battery of tests I was finally diagnosed with hemiplegic migraines. It came out of nowhere and I started having these same episodes every day until I started on a blood pressure medicine, verapamil. I also take one adult aspirin daily. I was on topamax initally, but it didn't help take the episodes away and I had some negative side effects. I started out on a low dose of verapamil and then slowly worked my way up until the episodes were pretty much completely gone. I will still have them occasionally, but all they are now are some very slight numbness in my upper right cheek and very mild weakness in my right arm. None of the confusion or aphasia that I experienced before with the episodes and no one can even tell I'm having one. I don't drink caffeine anymore because that is definitely a trigger for me.

My neurologist told me that the paralysis is actually the aura of the migraine and that an actual headache migraine can sometimes follow. I've never had a migraine in my life, so it was a little odd for me to be diagnosed with a migraine disorder, but oh well. She said that at some point in my life I might get the headaches, but I am not getting them now so I hope it stays like that. Until then I'll just stick with my verapamil. It's a miracle drug for me!

red1
New Member


Date Joined Jul 2007
Total Posts : 7
   Posted 7/31/2007 2:11 PM (GMT -7)   
thanks for that made me feel a bit better and shows medication can work just got to find one that suits. my gp says could be lucky and get there on our first attempt . curious that you said blood pressue tablets helped she wants me to come off mine n statins bit dubious as blood pressure was sky high before as was cholesteral ive requested to stay on them until after summer hols not fare on my little lad to be worse than normal so come sept may try it but they will keep a close eye on me due to tia incident. anyway thanks again and hopefully it will work for me as well as it has for you.

Kala UK
Regular Member


Date Joined Oct 2006
Total Posts : 54
   Posted 8/1/2007 1:19 PM (GMT -7)   

Hi, I also suffer from Hemiplegic Migraines and have done now since I was 7, I am now 31. I experience an attack every 6 to 8 weeks and at their worst will last for 12 days.

I am currently taking Flunnarizine, which is a calcium channel blocker. Although it has reduced the severity of my attacks I continue to suffer from them on a regular basis, and side-effects. I have tried all the preventative medications available, including Verapamil (which is also a calcium channel blocker) but this caused me to develop an extremely stiff neck (to the extent the GP at uni thought I had meningitis). Although I knew it was my migraine trying to get out, so what I ended up having to do was stop the medication the next day and then I would have my hemiplegic migraine. So in the end i decided it wasn't worth using it.

I have tried to survive without preventative medications, but the attacks are just too severe. I am also unable to find any triggers for my attacks. Also I suffer from chronic daily headaches and I am now under a specialist in London, and he really seems to think he will be able to help me.

It is my left side that is affected, as well as my speech. And I go completely off the planet!!!

I hope you find a preventative medication that helps you.

KalaUK


red1
New Member


Date Joined Jul 2007
Total Posts : 7
   Posted 8/1/2007 2:45 PM (GMT -7)   

hi

thanks for that made me realise iam not the only one  that feels this way iam guns pinch the completely off the planet bit if you dont mind.

my gp gave me pizotifen but because i had such a bad time with other medication after the tias ive opted to start after the summer holidays not fair on my little lad n to be truthful a little scared i can cope in my own way and have done for the past yr and half but come end of aug guna give them a try shes also given me aspirin again which dont no if all in my head but makes me feel better apparantly the neurologists say it reduces the brain spasms we get it may help you.

 i lost my job this yr because of these and that got me down worked in a school but when tried to return total disaster had an attack everyday and because ive got weakness on the left side couldnt do my job after 27 yrs was a shock and hard to give up but could be worse who knows if these work may be time for a new career. at the moment thou having a good day is my goal can live with it and for once enjoying a slower pace of life.

hope the doc in london works out keep me posted.

AM-uk


Kala UK
Regular Member


Date Joined Oct 2006
Total Posts : 54
   Posted 8/8/2007 9:09 AM (GMT -7)   

Hi again,

I am currently struggling with my job and have been referred to Occupational Health, I should have an appointment next week sometime. Although at the moment my manager is being very supportive which I greatly appreciate

I can understand your decision to hold off starting the medication until after the summer holidays. I also had to make a similar decision when at uni as my consultant wanted me to start a new medication around when my exams were, and I said that I would wait until after my exams. I do hope your new medication really helps.
 
Do you take the aspirin daily or use it as a pain relief? I have tried aspirin as a pain relief, taking doses of 900mg at a time. Unfortunately it didn't really help. Although I have considered taking a low dose, e.g. 75mg daily and I was considering suggesting this to my consultant when I next him.
 
Kala

catlou1
New Member


Date Joined Feb 2007
Total Posts : 13
   Posted 8/9/2007 2:22 PM (GMT -7)   
Kala - I take the aspirin daily, 325 mg.  I started on it initially to thin my blood when I first started having attacks and was diagnosed as having mini strokes.  It seems to help though because the verapamil will widen the blood vessels to my brain while the aspirin thins it, so it's flowing better with both.
 
Cat

Crstyne
New Member


Date Joined Aug 2007
Total Posts : 7
   Posted 8/11/2007 11:02 AM (GMT -7)   
*Is it possible to have a hemiplegic migraine "attack" or "episode" and have no headache before, during or after the attack?  (husband experienced complete paralysis on one side of the body including the face - it came on suddenly and all symptoms resolved in about a half hour)
 
*Is it possible to have an attack with no visual disturbance? (he has experienced half-moon like shapes cross over both eyes every 2 or 3 months but again no headache is involved)
 
*Is it possible to have an attack and feel no pain anywhere in the body? (during his attack he said he had no pain at all)
 
Thank you.................

red1
New Member


Date Joined Jul 2007
Total Posts : 7
   Posted 8/12/2007 8:52 AM (GMT -7)   

hi kala

sorry not replied been away. i take 1 75mg aspirin per day initially they had me on two when i was having tias when they stopped it thats when these started really severe again.dont know if its psycological or not but i think it helps. good luck with occ healh they were very fair with me n life goes on health more important after all. 

am

 
 
 
 
 
 
 
 
 
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