Newly Diagnosed Hemiplegic Migraine Sufferer

My name is Michelle and I am 38 years old, I have just found this website and am so relieved to find I am not alone.  I was recently diagnosed last September with hemiplegic migraine.  I have never suffered from migraine in my life (or even headaches that much).  One Sunday morning I started tingling in my mouth and face and it quickly spread to my right side and arm which then went numb, it was very frightening.  By the time I got seen by a doctor an hour later I couldn't speak and could hardly walk or stay awake.  The doctor called an ambulance and I spent 5 days in hospital being told that I had a TIA or 'mini-stroke'.  They ran all types of tests including CAT scan, full bloods, stress test, ECG, MRI x 2 and when they all came back negative the neurologist came into the room and said 'we didn't find anything in the tests so we're pretty sure its a migraine.  There's not a lot we can do so go home and we will send you an appointment for the migraine clinic'!.

The migraine clinic told me in January that due to the higher risk of stroke with these type of migraines that they couldn't give me preventatives and that they couldn't say if or when I would have another attack.

I have been living on my nerves ever since!.  I had another attack this month on the second day into my holiday which totally ruined it.  This time my speech went straight away and the numbness followed after a half hour.  Both times I had absolutely no warning and now I can't even stand in the queue in the bank without thinking 'what if I get to the counter and I can't speak'!.

Does anyone else have this crippling fear and if so how do you cope / live with it?  I feel like I am going mad, the fear and stress is taking over my life.  I am literally sitting at home with painkillers in my hand waiting for the next attack.  I have no quality of life, I can't go to a restaurant, cinema or anywhere on my own.  It is starting to affect my relationship with my partner because he can't plan anything because I don't want to go out in case I have an attack and even if I do go out I don't enjoy it because I am so stressed.  How do you all cope with this?  Am I the only one to feel like this?  Or do you all get warnings of an attack?  I get no warning and it is the fear of an attack coming on suddenly while I am out that is crippling me rather than the actual attack itself which I can deal with by crawling into bed.

Thanks,

Michelle.

Yes, I know exactly what you are talking about.  I was diagnosed with hemiplegic migraines two years ago, when I was 29.  I was at work and all of a sudden the entire right side of my body went paralyzed.  I fell out of my chair and eventually was able to call somebody to my office for help.  I was in and out of the hospital and had a battery of tests done.  Like you, they initially said it was TIAs, but after everything came back clear they thought it could be a migraine disorder.  I had never (and still have never) had a 'headache' migraine so the thought of this was very odd to me. 

I was getting the episodes daily, where the right side of my body would go out for about 10 minutes.  I had little notice.  My 'notice' was that I could feel my cheek going numb and then within about a minute it was full-on.  Then for about an hour afterwards my right side would be weak, but I could function.  I was put on daily aspirin and topamax.  That stopped them for a couple of weeks, but then they came back every day.  I was definitely living in fear.  I remember on one occasion I was giving a presentation to a group of doctors and I completely bombed.  I was so nervous that I was going to have an attack in the middle of it that I could hardly talk.

I ended up seeing a neurologist who specializes in migraines for my official diagnosis.  She said it was classic hemiplegic migraines.  She took me off the topamax and started me on verapamil, which is a calcium channel blocker used to commonly treat high blood pressure.  I can't speak highly enough about that drug.  Since the day I started that, almost two years ago, I have not had ONE episode of full paralysis.  Now I do occasionally get episodes, but they are so incredibly mild that all it is is some slight numbness in my cheek and a bit of weakness in my right arm.  I can completely function through them and nobody would ever know I was having one.

Since starting that I no longer worry about having attacks.  I have also made a slight adjustment to my diet because I noticed caffeine would often trigger an attack.  As a result, I no longer drink anything with caffeine in it. 

I would recommend either seeking a migraine specialist and seeing what kind of other preventative you can go on (like verapamil, but stay away from triptans) or asking your primary care physician about starting you on something.

Good luck, I know it's incredibly frustrating and scary. 

Cathy