IB/ATOS Medical coming up... again!

Dear Celine

I also have hemiplegic migraine and have never met anyone else who has even heard of it, let alone another sufferer!

Hi, I too suffer from hemiplegic migraine and yes it can be terrifying!

The worst one I had was a week before I had my first child and went to hospital.

I also forget words for things, including the names of my nearest and dearest so I feel like I am going mad!

Favourite funny phrase "what's a photocopier?"!

Best wishes,
Rachel

whit47 wrote:

Dear Celine

I also have hemiplegic migraine and have never met anyone else who has even heard of it, let alone another sufferer!

thats because most docs are going to think your having a stroke which type do you have the one that runs in family or the other one ? sh something

Hi Dave

I don't know if it's FHM or SHM. No-one on my mother's side of the family has ever had it as far as I know, but before the availability of scans etc., I assume anyone with it would have been treated for stroke as I was, so who can say really? I haven't had any contact with my father's family for over 40 years so no idea about them.

Hi Fedup

I have been in hospital 5 times in the last 8 years with 'stroke' and only just found out what the cause is late last year. I have less severe problems all the time though and the weakness, confusion and fatigue never really go away. I also forget the names of things which other people think is hilarious but drives me crazy.

Are you on any treatment and has it helped?

I also have severe migraines and have had these since i was 10 year old but luckily have not had one for some time now. I do still get the viual disturbance which had always been the 1st sign, then comes the numbness in my little finger on right hand and that goes numb up to my elbow. Then my speech goes and tongue goes numb, i was in an english lesson once when this happened and was taking notes even i didn't understand what i had written and then the horrendous headache. No cause to this was ever given but they have decreased over time. I think i can understand what you are going through!!

Mm xx

Hi, my migraines started at 11 years and typically were bad every three months.

I have tried many different meds but the best rof me is to be on permanent beta blockers and to take migrleve the second I get a 'spark' in my eye.

Consultant couldn't offer anything else because of other meds. MRI was normal.

Was awful in each pregnancy cos I couldn't take anything for it.

Mine isn't inherited.

I really feel for anyone who suffers, it is scary. But, like panic attacks, less awful once you know what it is.

Lights, including the sun can set mine off. Stress and hormones. Not food or drink.

Best wishes,
Rachel