Agreeky

I have similar issues. Our numbers are pretty close. My bp goes up too. Wish I could help I am on no meds yet. Finally got set up with a neuro that specializes in this stuff.

I am glad to hear you have improved again. Not knowing how this will play out is driving me nuts! I wish I knew what triggers it and what improves it.

Margiebee so some of your symptoms got worse before getting better? I noticed my blood pressure issues getting slightly worse. My blood pressure actually goes up and not down? Also I have weird vertigo issues that have gotten worse. My GI issues come and go though as do my breathing issues.

Thanks for that. I do have a specialist now, but no treatment yet. I have to wait until my ttt, and then we will start pursuing the causes. I guess she is one of the best in Boston. I actually just met her this week so it took 13 months for anybody to take me seriously. I was hinted by many docs to go see a psychiatrist. I started to break down to my former lung doc, he told me I do not have a lung disease and I should take my crying to a therapist. Hate him to this day. Anyway I am glad you understand my breathing sensation! So hard to describe. I hope you are feeling better now!

Spinner I really have no idea what triggers my breathing. I cannot pinpoint it. I was eating a lot of frozen meals on weight watchers around the time I got sick, so that could fit your theory. I eat pretty healthy now though and still having breathing issues. My issues include forgetting how to breathe, feeling suffocation in my throat, and a weird sensation on my left side. Almost like air going through a cob web.

So I have posted in this forum a few times now. I have also read over many posts, but I am still confused. My symptoms have been coming and going for 13 months. With each few month period bringing a weird new symptom. Am I slowly progressing to the point of full blown illness, or can you have mild dysautonomia? My neuro says I have fairly mild symptoms, except for my breathing. I have read other peoples post where they say they became bed ridden and I am pretty worried. Any opinions or stories would be great. Thanks.

Yes I do. I get that swaying off balance all the time. It is not related to bp or heart rate. Sometimes even sitting I get a feel I am on a wave. The neuro went over my brain MRI said she cannot remember the last time she saw a brain that good lol. Hard to believe though because I have so many neuro symptoms.

I know how you feel Naomi. I scrutinize all my tests hoping to find something. I always hope to find some clue in my blood work. Always in the hopes it can be treated or cured. Not knowing eats away at me.

Westernmass I am glad to hear this. Make sure you bring pen,paper, and a list of questions. Update me after your visit with her. I think I will shoot her an e-mail tmrow imapumpkin. Thanks for sharing with me.

I have also found my Ekgs abnormal, after reading the reports. No doc ever bothered telling me. It says I have twave flattening and inversions or something of the sort? Guess it in not important though because if they thought your heart was in any danger they would be obligated to tell you. That is why I hate getting the reports sometimes because I obssess over the details.

Wow that is great you see her too! How are you doing with your symptoms? Is it possible to reverse all this?

Hello all. I visited Dr. Anna Hohler today she is a neuro. Confirmed what I have known for months, that I have some sort of autonomic dysfunction. I have to go get a ttt, a skin biopsy, and a swet test. Is there any other tests I should be getting? She mentioned small fiber neuropathy as well. So many questions I forgot to ask in the moment! She said several things can be causing this. Mentioned metabolic disorders, viruses, connective tissue disorders, and other things I forgot lol. Should I be seeing different docs for these different potential causes? Already seen about a dozen specialists. She said right now my symptoms are mild which usually means better outlook. Any advice further would be appreciated...

I have apnea. They said partial obstructive hypopneas. So I get bouts of shallow breathing. I got approved for a cpap but have not gotten it yet. My body had a hard time handling it... I am waiting to see my neuro tmrow to see what else I can do.

Ps. Spinner I used to take Kpin but now I have ativan? Is that similar? I never take it. Maybe I should?

Ps. Spinner I used to take Kpin but now I have ativan? Is that similar? I never take it. Maybe I should?

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 again. Thanks guys!

Quick question? About two months back I got abnormal ANA test with a homogenous pattern. All my research said this pattern could likely indicate Lupus.. The rheumo did not seemed concerned though because my other tests were normal. Does anybody know what else this test could indicate? Or it could still be lupus?

Dana I had a hard time finding anything on closed eye hallucinations! I think after seeing that video I have something similar...

Joan I have a hiatal too. I do not buy for a second it does not cause symptoms. They said mine was tiny, but I can tell it gives me issues. Would love to read that article...

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?

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 tissue thing. I also get a sharp pain in upper left to middle rib when I breathe think it is diaphragm... Would love any input

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.. People think I am crazy when I tell them. Please describe it more. My eyes also burn in the dark if I look at an object. Also if I look at the object too long I can make it dissapear it is scary. Djeeps that vertigo is just like mine. Feels like the ground is shaking or I am on a boat. The local neuro just laughs at me... Thanks again everybody

Thank you all for your replies. I will update after I see the Boston Eye doc tomorrow!

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...

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.