Just been diagnosed with Complex Migraine on UK Migraine Awareness Week

Hi All,

I was admitted into A&E earlier this week as I was feeling really drowsy "feeling drunk", dizzy, my speech was slurred, I had a massive headache. Earlier I had been complaining of severe neck/shoulder/arm/hand/arm/nerve pain. Got really worried my memory was getting really slow. Not being able to recall the name of objects or not being able to string sentences together. I also was getting mini convulsions in my legs, arms and sometimes my face/mouth. Does anyone else have all these symptoms?

The A&E doctor wanted to send me back to the GP and get me referred to a neurologist saying the A&E unit had no access to Neurology... RUBBISH. My partner the previous year was seen by a neurologist when she lost sensation in her arm. Anyway.. I was sent for CT, ECG, Chest X Ray, MRI, a lot of Blood Tests.... I had to stay overnight and had more bloods taken and the Neurologist saw me.

He diagnosed me with complex migraine with epileptic symptoms. He's put me on 25mg of Topiramate twice a day. Its early days (3 days out of hospital). I still have most of the above symptoms.

I have to go back from EMG tests (electrical tests to test my nerves are working) and have a follow up with the Neurologist.

I have most of the above symptoms 3 days out of hospital. Its early days with the Topiramate I guess.

Any advice from anyone who has this condition/experts would be a huge help and reassurance.

Thank you.


Christoph

PS It's mad that it's also UK Migraine Awareness Week this week!

Welcome to the forums.

Your symptoms are very familiar. I experience similar symptoms regularly. I'm not sure what it's like in the UK, but here in NZ, when I present at A&E, I'm usually pushed straight to the top of the queue as it looks like I'm having a stroke. Once it's clear that I'm not, I'm "put to one side" to wait for the non-emergency teams to deal with me.

I experience the symptoms you describe several times a month and yes, the symptoms can last for many days.

With regards to Topiramate, it seems to work wonders for some, but for others it's more like a "pill from hell". I was prescribed Topamax for a while, but while it did little for the migraines, it really affected my memory, and for I while I really thought I was getting dementia. I suspect it was also the cause of kidney stones I had a year or so ago.

I'll keep my fingers crossed that Topiramate works for you. Best of luck.