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About Nin

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  1. Ah right yes cardiologist etc are usually the ones who don't know a lot. I seen a specialist in pots and he didn't explain anything to me or give any advice. Everything I have learnt has been off here.
  2. See this is the worrying thing like you said even renowned specialist don't understand this and then I'm worried I won't get the right treatment to sort this. I can't see how ivabradine alone will work...but I might be wrong.
  3. Yes it must be white coat syndrome! I'm taking my own readings for 3 mornings to email over so he can see, as the medication ivabradine might not be suitable. It was distressing as it happened 3 times and I thought please just put me back down now. Yes true I suppose being dehydrated made me worse as by that time on a normal day I would have had 2 coffee's and 2 pints of water by then. I really hope ivabradine works and I can start walking again.
  4. I've seen a neurologist before the ttt and she knew then I was having siezures and not once said it could be pots related. I think siezures are more of a uncommon symptom of pots and most neurologist and cardiologist are not aware of this.
  5. My blood pressure when I test at home is on the low side and then with doctors it's higher. They're not seeing the true me. I don't know if it's a adrenaline problem with me but my HR goes through the roof and blood pressure goes from 105/58 at home to 130/78 with doc. Doc said about putting me on ivabradine but I'm worried it's going to drop my blood pressure. I had a tilt table test today and my heart went sky high and had 3 siezures through the test which was like 40 mins standing. My heart again at home don't usually go this high, so I don't know why my body reacted like this as before I went in I wasn't really that nervous. I hadn't had my daily fix of coffee (which seems to help) less water and walked to appointment which done me in beforehand. Do don't know if this triggered something inside. I have siezures at home but when I do too much on my feet, I had a siezure really quick with the ttt...so wondering if its a adrenaline thing like a fight or flight reaction my body felt having this test??
  6. All this is true! I was saying the exact same things to my mum today 😂 It's just not a shock to the system to me as this is how I've been living anyway. I'm just watching people around me falling apart already. One good thing for me is I got my children home with me and don't have to be crying every morning because I can't take them to school anymore.
  7. Thanks pistol. I've learnt a lot from the info you sent
  8. What's excessively vasoconstriction? Do a bath trigger that? Baths make me feel terrible afterwards. I had a siezure the other day after a bath because I kept going and my body was telling I need to lay down. Haven't had a siezure for about 3 months.
  9. No I haven't tried that. I'm not even sure what vasoconstriction or vasodilation is to be honest? Which one of those effect in a hot bath do you know? A bath make me feel terrible after. I even had a siezure after a bath the other day because I felt exhausted after it and pushed myself to keep going.
  10. I find after I drink a cup of coffee in the morning I feel better. I know I wouldn't if I kept drinking throughout the day, I have another one around 3pm and again feel better. I thought coffee would make you feel worse. I'm thinking maybe my problems are more brain related like a leak as caffeine helps, i have had brain trauma off the back of problems with both ears. Hopefully having MRI Saturday but if they don't put dye through I don't think they would see a leak.
  11. Yes thats what I was thinking. It must be the lack of blood going to brain.
  12. I decided to walk to my appointment as I don't like going in a wheelchair. After about 4 minutes of walking I tried to talk to my mum, i would say a couple of words and then nothing would come out, I would try again and no words. We just sat in silence for about a minute until I could speak again. Also as I sat I could see stars flashing.
  13. I also twitch and the more active I am the more I twitch, have had this for a year
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