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About Agreeky

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  • Birthday 11/10/1987

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  1. Rach I have breathing,bladder, and Hypertension(my bp goes up) involved and it is still called mild from my neuro. I guess compared to what I read on here I could call myself "mild". In the sense I am not bed ridden and can still function in society. That I do feel very lucky for!
  2. Ps. Spinner I used to take Kpin but now I have ativan? Is that similar? I never take it. Maybe I should?
  3. Ps. Spinner I used to take Kpin but now I have ativan? Is that similar? I never take it. Maybe I should?
  4. Spinner I appreciate all the advise. I often have thought if I have a dairy allergy... I did regular allergy testing but do not think this was included. I actually got approved for a cpap due to apnea. The doctor is not sure how well I will handle it though. When I did the study on it my body kept jerking not sure why?? I wonder if my muscles were not strong enough to push air back out. Rich, I have read about that test. Think it would be a really good test for me. I wonder if a neuro can order it? I am going to one that specializes in dysautonomia tmrow at Boston Medical center. I will update
  5. Dana I had a hard time finding anything on closed eye hallucinations! I think after seeing that video I have something similar...
  6. Thanks everybody for your responses. For me it is my most bothersome symptom. It scares me. Also, I do not get what triggers it because it comes and goes. Weird part though is my oxygen levels are excellent during day. They drop during the night though. They said I have hypopneas. I did a study with a cpap but my body had a hard time with it. Waiting to see what my diaphragm function tests say... Rich I will private message you for some more info. Have you guys had abnormal pft tests?
  7. Hey everybody. I got so many responses on my eye problems I thought I would throw this out there too. Since last summer I have had a hard time breathing on and off. Some days it feels like my body is not breathing on its own. Other times I literally feel suffocated. This is unrelated to bp or heart rate. The weirdest part is this sensation I get on the left side when I breathe. It is almost like a paper bag is in my body and I can feel it inflating and deflating... Or like my lung has cob webs and I am breathing through it. So hard to explain. Lung doc stumped. I am thinking it is s connective
  8. Hey all thanks for the comments! The Boston eye doc did not have much to say. I have no optic neuritis, true floaters, or abnormal eye movements. Pupil dialtion normal... So now I have to go to a retina specialist. He only sees one patient a month! But I guess he is the best of the best in Boston. They will try to see why my eyes are doing these things in the dark. The doctor really does not think night blindness. Dani I have that annoying right eye floater too. I only get it in the sunlight though. Never inside the house? Dana I think we get the same symptom in the dark. That tunnel vision..
  9. Thank you all for your replies. I will update after I see the Boston Eye doc tomorrow!
  10. Clare, did your doctor tell you why people with pots have these eye issues? I wonder if some signal gets messed up? You do not have the tunnel vision I described do you? I cannot find anybody else with it...
  11. llynchurch, I had two bouts of benign positional vertigo. Where when I would lay down or I would look up to thr ceiling I would get it. It is almost like having the spins when you are drunk. I think it is what you described it moves like 90 degrees. But I also have a new dizziness now where it feels like when I am sitting it feels like I am on a sea saw, maybe that wave feeling you described. Also, if I am standing it feels like objects are moving that are not. Dunno if that is vertigo too?? My MRIs come out clear too except fluid in my sinuses.
  12. Thanks hope! Actually I saw that on Greys Anatomy where they had a whole body MRI haha. Wonder if it will one day exist!
  13. Thanks guys! Yea my tunnel vision is not related to blood pressure. So it seems my vision problems could be unique maybe with the right eye doc it could lead to a diagnosis. I spoke to a lady with chronic lyme and she said lyme could be changing the mechanisms in my eye. Hence the night time issues. I am doing a lyme igenex test in June so we will see if that shows anything. I will update you guys! Thanks so much.
  14. Also, badhbt what type of eye doctor did you go to? I feel like there is a miscommunication between eyes amd brain. Sometimes when I am in a store I confuse floor pattern changes for a step. Like if I am walking on tile and it changes to carpet my body takes it as if it is a step and I stomp over it... Sorta hard to explain..
  15. Thanks for the replies! Susan do you have true floaters or visual disturbances? They said mine were not true floaters? Also is your tunnel vision at night? I always wonder if my night time problems are related because I have been telling friends for 4 years now I have trouble seeing while I drive at night. So who knows if it is part of this or not... My field vision test was good. They want to send me to a more neuro specialized eye doc though. If I look at something too long my eyes begin to burn too almost like something is off with the tear duct. Very fraustrating.
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