I need help

[Sherry284]

I've been to two neurologist and they just can't seem to figure me out, so I need help.  I've been diagnosed with Hemiplegic migraines and have had these migraines since I was 6 years old, I am now 30.  Approximately 6 months ago, my migraines changed, increased pressure in my head, nonsensical speech, head shaking, legs and arms going numb.  Approximately 1 week ago, I began having seizure like symptoms when the pressure in my head became intense.  I've had an MRI, EEG blood tests and everything has come back normal.  I've even had a TEE and it showed a small PFO, but the neurologist does not believe it is large enough for it to affect me.  The doctors are at a loss and now believe that maybe I have too much stress in my life.  I've explained that I am content in my job, marriage, have 2 kids that I enjoy and don't feel stressed.  The doctors seem to have given up on me, any suggestions?

[Sonaya]

I am not a medical person but just wanted to post since your situation is so similar to mine.  I have never had migraines or headaches before but approx 5mths ago I had an episode that started my journey through this medical mystery whereby initially thought it was a stroke.  During the past 5mths I have had what seem to present as mini TIA's and seizure type episodes.  I have had all the tests too.  MRI's came back all clear so my doctors put it down to Hemiplegic Migraine.

I get all the same symptoms and them some as you do.  I have just had an EEG and dont have results yet but I do know that when they put the flashing strobe light on, I started to have uncontrollable twitches in my face and reacted quite badly to it.

I am not sure what a TEE is and what a PFO is? Sorry not familiar with some of the terminology.

Have you actually looked up some of the symptoms for hemiplegic migraine?  They can be quite full on and  many people need to be on medications for it and some say even an anti seizure medication works well?  Has this been suggested to you?

I really get quite annoyed when the doctors put it down to stress because they cannot think of anything else?  YOu need to stand strong and keep ensuring to them you do not suffer from anxiety and your stress levels are fine.

I would be getting another opinion if you are not happy with the one you have.  However if your happy with leaving it at hemiplegic migraine then ask your doctors what you can take to help with your symptoms.  At the end of the day you never know they may work for you and improve your life and s ymptoms may go who knows?

I have been keeping a diary of when this all started.  NOt just for the doctors but for me too, it helps to work out patterns of when mine start, what I was doing before hand etc etc.  


It can be quite frustrating when nothing shows up but you know something is wrong.  I wouldnt put hemiplegic migraine into a nothing category, it can be quite full on, I am just not convinced, in my case its that and until they can prove to me otherwise, I am not going to rest or give up. I havnt even seen a neuro yet but that will be next on my list if the results of my eeg comes back clear.

I wish you good luck on your journey to finding out whats wrong with you.