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About Nin

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  1. Oh this was me back a year ago. I just had a siezure out of the blue. Went to the hospital and the jerking and involuntary movements i just could not stop. Its was frightening! I still get them to this day and its a warning a siezure is coming. They said they are non epileptic. About 5 months after I was diagnosed with pots. Not one doctor has said this is pots related, but I believe it is. I just think its a rare symptom of pots. Another thing I read the other day is mast cell activation syndrome can cause siezures so that's another thing I would like to rule out. I struggle the most with the
  2. Has anyone tried sodium chloride and did it help?
  3. Yeah get a digital blood pressure monitor, those wrist ones are inaccurate.
  4. I'm from Wales and unfortunately had to pay private for a tilt table test as I knew I would still be be sat here waiting because of covid. My GP did refer me but they just won't put it as urgent. I paid £750 for tilt test and then consultation afterwards. After that I paid again to speak to Dr Gupta as he is highly recommend and I think he just forgot about me. So I have now just got an appointment through the NHS and a specialist nurse is in contact with me and hopefully going to try new medication. She did say they are not even doing tilt table test now, but obviously I paid to have it alrea
  5. It's just ???? All the time. I'm always questioning why why why. Now I know we just don't have the answers most of the time....it is what it is. I tell myself "you just got to ride the storm" I just hate it when I know the storms coming. I try to stop things happening, but I also have get on with everyday life i.e cooking, cleaning. I was doing really good for about 2 weeks, cleaned the house and then felt rotten since. Acceptance really is hard to accept! But I suppose we got no choice. Keep going like you do!
  6. My eyes are a big big problem. I feel I'm constantly on a boat! I can't seem to focus on anything and if I do I feel like I'm swaying very fast. So looking at my phone, talking to people (making eye contact) I'm struggling with. The lights in the supermarket are terrible also
  7. I'm not sure if blinking helps. I tend to close my eyes and look back at whatever I was focusing on just to rest them and that seems to help.
  8. I did ask her about nystagmus but she said no it doesn't look like nystagmus
  9. This eye problem seems to be a common thing with pots I guess.
  10. Thanks for that! Everything you just said is my homework they gave me after I went for a vestibular function test. Even thou she said it doesn't seem to be coming from my ears (surprising enough both been operated on) she told me to still do the exercises. I hope they don't make me worse
  11. When you do speak to your sisters would you be able to ask the name of the condition? I did have a vestibular function test the other day but not sure if I was in the right place for what is happening. Nothing showed up with that. Nothing worse when something affects you so much and they say no couldn't find anything!
  12. No one has said why I get these siezures. I had 3 operations in the space of 9 months and started having siezures after the last operation. I was feeling more and more unwell after every operation and then diagnosed with pots. The siezures I get are usually when I've pushed myself too far and my eyes start flickering fast and I start fitting for about 2 mins. I had them when I had my tilt table test. With my eyes and not being able to focus on things I don't know if that is sort of a siezures thing or they are just not functioning properly. Anything that's flashing in my eyes make me go weird
  13. Just posted the exact same thing as you on here about 4 days ago! My eyes are a nightmare for me. I struggling to focus on anything e.g. making eye contact when talking, reading. I avoid so much because once I do start focusing my head starts spinning. I actually started having siezures since November 2019, these are non epileptic siezures and started when my pots symptoms got worse. I had a vestibular function test the other day but nothing got picked up. I'm wondering if this was even the right place to have this problem checked out.
  14. I have terrible trouble with my eyes, especially when I need to focus them. As soon as I focus my eyes e.g talking to someone, looking on my phone, reading, my eyes feel googly and I get real dizzy and stay that way. I had a vestibular function test today and she said it's not my inner ear. She tested my eyes and only said my right eye was flickering at the end but that's it. I felt disappointed coming out with no answer again to another disabling problem I have. Did I even go to the right person if I'm having dizziness caused from my eyes? Is this a common problem with dysautonomia?
  15. I've had this pressure in my ear from standing for about a year. Initially I thought it was my ears playing up but for me it almost feels like the bloods not getting to head quick enough and that's why I get this whooshing sounds. Got constant ringing in ears as well
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