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About Nin

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  1. 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.
  2. I did ask her about nystagmus but she said no it doesn't look like nystagmus
  3. This eye problem seems to be a common thing with pots I guess.
  4. 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
  5. 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!
  6. 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, when I had a EEG done my eyes were jumping all over the place along with my body. But the EEG showed negative for epilepsy and i was sure it would be positive. I just feel so uncomfortable talking to people as I don't won't to focus on their face. Typing this to you now is making me dizzy and I tend to close one eye because my eyes are so strained. Once it starts the dizziness/head swaying feeling I deal with this all day everyday. I believe this is pots related as the autonomic nervous system controls your eyes as well and something is just not functioning properly. My gut is something like binocular vision dysfunction. But I don't know who you would see to test for this
  7. 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.
  8. 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?
  9. 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
  10. Wow pistol it sounds horrific! I can't believe what it done to you. It's crazy just taking medication to help another problem your body would react so bad. Hope you start to feel better and find a alternative medication.
  11. Thanks pistol for that. I've actually just bought a rowing machine. I'm only doing 4 mins at a time. Is it ok to use everyday do you think? My partner said you're not suppose to exercise everyday, but I thought 4 mins a day would be ok. It's actually surprising how many people get sore throats and this is not on the list of symptoms with pots. Actually I think most people don't realise it's part of pots.
  12. I've been feeling breathless for about a week now. This is something that comes and goes. I can have months of not feeling like this and then it's back again. It's like I can't get enough air into my lungs Also I've been getting sore throats since November 2019. Do anybody get sore throat on and off. Always seem to get it when I'm having bad day's
  13. Morning's are bad for me too. I just wake up feeling rubbish everything morning. After a coffee (which seems to help me) I feel like I can function a bit better, until I start pottering and back to square one again. So I lay down and just feel terrible still. I think if I lay I'll feel better and I can get back up again. I just lie there thinking well if I can't even lie without feeling so bad what do I do!
  14. I've had problems with my eyes for over a year. I cannot read a book, looks at a screen without me spinning out. Once I do look at my phone or try to read something it happens and that's me spinning all day! So I only look at my phone at night when I know I'm going to be going to bed soon. Even talking to people really strains my eyes because I have to focus to look at them. Dry eyes I have as well. This is something I need to check out. I did have a vestibular function test appointment but they cancelled it because of covid. Hoping it will eventually shed some light on it.
  15. That's what I was thinking today it must be a flare up. It's been nearly a week I've been feeling this bad. I mean the best of times are terrible, but this past week has been horrific. Do you ever get a certain time of the day you just may get a spurt of energy and are able to actually do things? I had that today. I was in bed for about 2 hrs I just couldn't get up and then later on pottering thinking what happened earlier and how am I able to to what I'm doing now ok. I'm just constantly trying to figure it out in my head!
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