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About Nin

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  1. Yeah they said she's not taking on any new patients so can't even book an appointment now. They said they'll put me on the waiting list.
  2. I wouldn't had thought she was that busy! I know their is a guy in London Dr clive Grattan but don't know if he's as good.
  3. Oh no thats a long wait! How long do you reckon I'll wait to get an appointment with her if I made one now? Is it because of the lockdown? You have tried everything....so disheartening 😔
  4. Problem here is we haven't got what america offers! What have you tried so far? Well my pots doctor keeps telling me to take sodium tablets as he's reluctant to try fludrocortisone! They don't seem to be working. When the pots nurse phoned and I said these salt tablets aren't working, she said awww don't say that. Not being funny but those alone don't work for most. She made me feel like they should work. The only thing that seems to keep me on my feet are these horrible compression stockings. I can't keep wearing these especially in the summer, so I need another solution Dr Croom probab
  5. When I got really bad last year the one thing I got was bladder problems. I have to say it was one of the worst out of everything! I could hardly walk as it felt like bone was rubbing on bone (it was really weird) i had 2 lots of antibiotics and it just got better. So yeah I really feel for you.
  6. Yeah hoping to see Dr croom in next few months as I need this checked. Only problem here now we're in lockdown so probably can't get anything done anyway.
  7. This have been happening to me all week. I go to bed reading on my phone (calm) and then my heart has been pounding, also blood pressure going up. I've had some scary episodes this week. Im come to the realisation the toothpaste is causing it. I'm brushing my teeth, then instantly they start tingling, about 45 mins after heart starts pounding, body heats up, feeling sick and feels like a seizure is coming. The next day I'm just good for nothing. I wake up in the middle making these weird breathing sounds and my heart just pounding.
  8. I know pistol how can they say by the way your eyes are open or closed what type of seizures you're having. Its hard to find much info with autonomic seizures and especially a video. At least I could see if mine are similar.
  9. They told you autonomic seizures...did they explain what that is? Are you conscious and can you communicate? I'm conscious when they happen to me, I can't speak fully but can throw a word out. I remember when i 1st started having them my breathing was terrible, but don't seem as bad now when they come. Im just confused with these seizures as I've discovered food is also triggering mine. I need to lay off the nuts as they all seem to be reacting to me. I ate 2 chocolate nuts last night and a cake with a few sprinkles and I'm flat out today. Over doing it also causes seizures for me too. It see
  10. Are you seeing a doctor private for mast cell in the UK? It seems through the NHS no one specialises in it. I'll have to go private if I want to see if I have got that.
  11. I waited a year to see a neurologist in the UK. Have you ever linked your seizures to your mast cell activation syndrome? I have seizures and read mast cell can cause non epileptic seizures. Eating peanuts causes a seizure. Im just so confused with these seizures
  12. I had covid beginning of December. When the symptoms 1st started. It made me feel extremely weak and thought oh no my pots is getting worse. I was relieved to test positive because I thought I would stay like it. I lost my taste and smell. Im really lucky because my chest was fine. So panic over because I was worried how my body would react
  13. I slurr my speech and its usually when I've over done it. When this happens I usually have a seizure not long after.
  14. I'm really sorry you're going through so much right now. I also have seizures and I also feel them coming. It came out of the blue a year ago.
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