Cate Posted September 10, 2017 Report Share Posted September 10, 2017 Hello All, I'm new here and new to dysautonomia and feeling very scared. So please go easy on me 😊 I have been referred for tests for POTs and diabetic autonomic neuropathy but I am 99% sure of this diagnosis already. I have also been given Fludrocortisone as my blood pressure is low and my vision goes black when I stand. I'm also exhausted all the time; struggle to stay upright for prolonged periods of time, have to nap after eating, have racing thoughts and can't cope with sensory overload situations, can't tolerate heat or exceed use. Basically the usual dysautonomia symptoms. One of the scariest symptoms for me is my vision problems/brain fog. It was actually one of the first symptoms to surface. I say vision problems/brain fog because I don't know where one stops and the other begins; I get a lot of floaters, in particular if I have been looking at something quite bright. But my eyes don't seem to adjust to light. Even on an overcast day I really struggle and everything seems too bright. It's really quite scary. I also struggle witth brain fog which is kind of like an 'unreal' feeling which I have assumed is because my brain isn't getting enough oxygen because of the blood pooling in my legs etc. I wondered if anyone has received treatment successfully for this or if anyone has found anything that has helped them? I'm really frightened and really apprehensive about what the future holds for me. Please can anyone give me hope that it is possible to live a normal life again? I dream of being able to do the things 'normal' people do like going on holiday or shopping. And I'm scared to death I may never have a family or a career because of this. Does it get better? Any messages of hope would be so much appreciated, Cate Quote Link to comment Share on other sites More sharing options...
angelloz Posted September 11, 2017 Report Share Posted September 11, 2017 I have vision issues as well. I have had them for many years and so far not really worse. My pupils are really tiny and don't respond the way they used to. My husband says sometimes they are different sizes but not when I have looked at them. Things often seem very bright to me. Sometimes I seem to have to sort of force my eyes open when outside. I also have gotten what I call dim vision at times. Blurry on a few occasions due to dry eye issues. I do believe things will get better for you with time. Some of it is you adjusting, but I think also over time the body learns to sort of compensate for some of the autonomic changes. I think everyone here understands the fear, but have hope. Not only can time improve things but studies to help and breakthroughs can happen any time. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted September 11, 2017 Report Share Posted September 11, 2017 Be careful about starting the fludrocortisone before having the tilt table test. It could mask the symptoms and alter the results, preventing a POTS or dysautonomia diagnosis. Quote Link to comment Share on other sites More sharing options...
Jan Posted September 11, 2017 Report Share Posted September 11, 2017 Blacking out is not unusual for low blood pressure. If you haven't gone to an eye doctor, I would highly recommend it. You may have eye issues unrelated to POTS. There are many eye conditions that can cause an increase in floaters that should be addressed by your eye doc. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted September 11, 2017 Report Share Posted September 11, 2017 4 minutes ago, Jan said: Blacking out is not unusual for low blood pressure. If you haven't gone to an eye doctor, I would highly recommend it. You may have eye issues unrelated to POTS. There are many eye conditions that can cause an increase in floaters that should be addressed by your eye doc. Agreed about the eye doc. My friend is one and because this is medical, I would make sure to go to an MD, an Ophthalmologist, not an Optometrist. Quote Link to comment Share on other sites More sharing options...
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