Oh I feel so relieved to find someone else who understands what i'm going through and doesn't think i'm mad!
I had my daughter at 16 and when she was 2 months old I had my first attack, I had a terrible headache but then the numbness started, I couldn't speak or swallow or walk properly. i was taken to A&E and was told i'd mad a mini stroke. It went with 24hrs but I was left weaker for a few months. I had suffered from migraines from 14 and didn't think it was linked. Then when I was pregnant with my son 3 years later I had another attack. I went numb all down my left side and I had them daily/ sometimes 2-3 times a day. I also had brain fog, got confussed and couldn't find the right words. I then started having seizures. I was admitted to hospital so many times it was awful. The thought i'd had a stroke then they thought i was making it all up for attention as i was a young mum, then they asked if my husband was abusing me!!
My neurologist then told me it was because I was fat and had kids young so if i lost weight i'd be fine - not helpful.
Eventually my GP said he thought i had hemiplegic migraines and refered me to a migraines specialist in kings college hospital london. He thought I had a PFO - a small hole in the heart and it has since been found that people who have this often suffer from bad migraines. I had a scan and a hole was found so I had to have an operation, but when they did it they couldn't find it!
The specialist recomended that I start a daily medication to control the symptoms, but I didn't want to as I had no faith in doctors, i still don't and was worried it would make it worse. He told me the tablets my first neurologist had given me was completely wrong and no wonder I had suffered, but stupidly I still said no! I was given a tablet to take the pain away when they started but as they had settled down after having my son, I thought I'd manage.
Then 2 years ago I had the worst attack I've ever had and it took about 3 months to recover. It left me with vertigo and off balance all the time. I was so weak down my left side i couln't do anything. I saw a dr who said I had damage in my brain that a nerve from the balance organ had been damaged and thats why it was worse. An MRI scan was done to rule out a stroke but my neurologist said sometimes haveing HM can cause damage - anyone else heard of this??
To cut a long story short, I now am off balance all day everyday which really limits what i can do. I can't drive anymore, and use anything i can lean on to get around the house. I have a really bad attack about once evry 3 months and some smaller ones in between. Stress, hormones, th weather, flashing lights seem to trigger them off and cheese so i do my best to avoid all of them.
The problem i have is both me and my husband wanted another child. I fell pregnant earlier this year but I my migraines came back worse than ever. I had no medication, and was fitting and going numb daily. I was suffering really bad vertigo where i couldn't get out of bed. In the end the I went to A&E where the dr advised me to terminate the prgnancy as I was at huge risk of having another stroke. So I took his advice and now feel it was the worst decision of my life.
I've since looked into it a lot and found out that what i had before wasn't a mini stroke it was just the HM starting up. My mum has them, not as bad, but they said it was genetic. So was I really at risk of having a stroke??? Are they linked? Also I have found out that dehydration can make them worse and I had bad morning sickess. Teh trouble was I was no longer under my neurologist so to see him through the NHS again was a 4-6 month waiting list and we could not afford to pay private, so I couldn't get advice from a specialist in time.
Is there anyone who has had a baby with HM? Is there a way we could have another child or is it too unsafe? I'm only 25 and hubby is 27 so it would be a shame to say never again. I am registered disabled because of the way it effects me and it made it impossible for me to do day to day things. I can no longer drive so I can't take the kids to school and even walking straight down the road is a chore without something to lean on as i'm still weak on one side and always dizzy.
I just feel like this is never going to end and i don't want the rest of my life being stuck in this house doing nothing. I want to live my life and enjoy it.
I'm going to see my GP in the new year to get referred back to the migraine specialist and i will agree to a daily medication. I've read that calcium blockers are good so i might talk to him about them.
I'm really sorry for the long post but any advice would be great. Thanks x