Posted 3/23/2011 5:33 AM (GMT -6)
It has been sometime since I have been on this forum but I saw you post today and just had to respond to you. I am sorry to hear that you have been diagnosed with hemiplegic migraine.
I too have hemiplegic migraine, I was diagnosed at the age of 7 and I am now 34, and I'm from the UK. However, I have been a chronic suffer for over 13 years now.
What you need to realise is that everyone is different and all I can go by is my own experiences. Like I said I was diagnosed at the age of 7 after several severe episodes and the doctors had no idea at first with what they were dealing with and my mum literally remembers them being surrounded by textbooks trying to match my symptoms with a diagnosis.
Anyway when things settled down I would have an attack every 4 to 6 weeks lasting a couple of days. However, as I have become older my attacks were every 6 to 8 weeks but lasted up to 12 days. I was put on preventative meds at the age of 14 and went through virtually every one with several being tried more than once with no true benefit.
I am currently taking 3600mg Gabapentin a day, 5mg Flunarazine a day and my latest medication is Memantine 20mg a day. Although my illness isn't completely controlled by these medications it has been shown that they are all doing a little bit. For example, the Gabapentin is helping to control my hemiplegic aura (like you my left side is affected), Flunarazine has been seen to reduce severity to some degree and Memantine was only started in October last year so waiting to see what this will do but it has helped with my level of concentration and I my head feels less "fuzzy" if you know what I mean?!
Despite all of these meds none of them touch my pain. I have not had one pain free day in over 13 years despite other treatments being tried as a hospital inpatient.
My most recent admission was 4 weeks ago due to suffering a severe hemiplegic migraine and I was in hospital for 12 days. I was completely hemiplegic for 5 days before I started seeing a mild improvement and gradually over the following 7 days it started to resolve but it always takes my arm longer to recover.
Symptoms of hemiplegic migraine include:
Episodes of prolonged aura (up to several days or weeks)
Hemiplegia (paralysis on one side of the body)
Meningismus (symptoms of meningitis without the actual illness and accompanying inflammation)
Impaired consciousness ranging from confusion to profound coma
Headache, which may begin before the hemiplegia or be absent
Ataxia (defective muscle coordination)
The onset of the hemiplegia may be sudden and simulate a stroke.
Nausea and/or vomiting
Photophobia (hypersensitivity to light) and/or phonophobia (hypersensitivity to noise)
I don't want to give you information overload (although I have probably done that already!) so if you have any questions then please feel free to ask.