JimL

I just got used to it. It bothers me more if it's very quiet.

I've had it for years in my left ear mostly. It's from playing drums in a band. I will say that my hearing has gotten a lot worse in that ear since I've come down with POTS. I have to wonder if something inflammatory is going on.

No problems with that procedure. I did pass out on the TTT after getting nitro.

You're welcome

Thank you.

One of my brother in laws had one. He had it removed and has to be on some hormones for the rest of his life. In his case I think his hands and feet were growing and he had peripheral vision issues.

I have one low in my left lung, almost 2cm. Don't know how I got it.

I have one in my lung that hasn't gone away and my have gotten a little bigger. No one ever said there were meds to treat it.

http://www.dysautonomiainternational.org/page.php?ID=43

Ophthalmologist, not optometrist. The eye place I went to has both, but I saw the opthalmologist, FWIW. They usually have experience in internal medicine and would be better than an optometrist. That said, I would bet it's nerve related, but why? If you see a neurologist, they should have a clue.

It went. Having trouble swallowing and coughing. Will call the doc tomorrow. I thought this part would get better by now. They said it went well. We'll see.

You need to see a neuro-ophthalmologist, or at least a decent ophthalmologist.

Have you been tested for myastenia gravis?

Thanks. Came home thursday and everything wore off. Funny thing is I felt better in some ways than I had in months. They gave me steroids before the operation IV and I wonder if I have something inflammatory going on. It made me gain a lot of weight though. 8lbs, but I am down 4 from that now. They did put a lot of fluids in me too. Blood sugar went up a lot too. Normally 85-90 and it ws 127. Friday I took Tramadol and slept most of the day. that seemed to help a lot. Temps would go up to 100 at night, I'd take tylenol and it would go down. I feel like I am all over th place. Interesting thing is so far no high HR readings and I've been off lisinopril without bad effect so far. Just my throat is messed up from the surgery.

The only way I get diarrhea is if I drink a bottle of citrate of magnesia.

The cardiologist tested me for it and it was 567, which is in normal range. I just take a multi, vitamin C and vitamin D. On another note, I have surgery today. More cervical fusion. Leaving in a half hour. Wish me luck.

I had the lapband done in 2009 and removed in 2018. I lost the 170lbs between June 2017 and december 2018. What preceded this or coincided that I can think could be remotely related: I went to Florida in May of 2018 and did some hiking. Did I get bit by something? Started running on a treadmill in May, did I jar the band or something else and screw things up? Ate somewhat undercooked cod in May. I also tried intermittant fasting in May and doing so, felt like I screwed up my band. Trying to get enough calories in 2 meals in 8 hours was tough with a band, felt a lot of discomfort after this. Worked on a bathroom where I had to tear walls out and there was mold, sprayed everything down with bleach...All this happened in May. Thing is, at the end of May, I started with gastro issues. EGD in July showed gastritis and H Pylori. Treated and symptoms came back after treatment was over. Got patulous eustachian tube in August, neuropathy in feet and lower legs in September, with drop foot left side. Determined to be fully compressed claudia equina, L4-5. Surgery on Halloween for that. Band was removed in September. During this time I developed binocular diplopia. Went to ophthamologist and then sent to neuro-ophthamologist who said I had 4th cranial nerve palsy. Christmas I started with POTS symptoms. My first guess is an autoimmune reaction from the H Pylori, but I don't know how to prove that. All the standard tests come back normal. I did my own ANA, normal, eye doc id ACHr and that was normal. Normal CRP and sed rate. Now I have more cervical fusion, last time was 2012. Is it my spine? No one knows. THe neuro eye doc at mayo is useless. Just said you've had the palsy for awhile, but I've decompensated. Why? I've never had eye problems in my life. No curiosity on her part. I feel like I am getting reverse gas lit. Everyone is telling me I am fine, but I am not.

It's Wikipedia, so YMMV as usual: https://en.wikipedia.org/wiki/Neuroregeneration

That's so counterintuitive. Why would your BP drop without BP lowering meds? Mine was going down as I lost weight and I cut back. Thing was, the more I exercised, which was just hiking, the lower it would go and I cut back more to where I am now, which is minimal or near minimal doses of metoprolol and lisinopril. I am off lisinopril for 3 days before my neck fusion tomorrow and my BP has raised a little bit. POTS is still there though.

It's one of those things that we encounter with doctors. If it doesn't show up on standard tests, it doesn't exist or it doesn't show up consistently or its rare, so it doesn't matter. The best for me was a neuro-ophthalmologist at Mayo that told me I have 4th cranial nerve palsy. I asked why, as I've never had eye problems, especially double vision. She was like, you've had it for awhile, but for some reason you've decompensated. Why? No answers. So she sends the report to my regular eye doctor who tells me if it stabilizes get prism glasses otherwise I'll see you in a year. Whiskey Tango Foxtrot? On one level, he doesn't think it's serious enough to do more. On another level, do you trust his judgement? I am a little self-centered about health issues in that I know what normal should be and when I am told abnormal is ok or we can't find anything, I don't accept it either. The choices are to shut up and accept their diagnosis/decree, challenge them or move on to someone that will listen and look further. I am finding it difficult to be an effective advocate for myself as whatever I am doing, it's not reaching the right synapses in doctors. It seems like they don't like the patient having ideas of what's wrong with them, they want to diagnose it themselves. Then again, William Osler, the father of modern medicine said that if a doctor listens to a patient, he'll get the diagnosis. Something that's not taught anymore or isn't taken to heart.

Interesting point. I had a follow up with a vascular doctor today and I told him my woes. He said maybe I need to stop taking one of my BP meds. I've lost 170lbs and I've cut down on my meds a lot, but it's possible one is causing some issues, not all. Maybe aggravating it.

I think 1-2mm a day.

How often does one have to do IV fluids?

I've been doing mostly water, some milk once in awhile and gatorade. I want to try gatorade zero. I try to keep the suger lower if I can, just because. I've been adding salt to my diet too. I use coarse kosher in my cooking. I've been averaging about 4700mg a day, with a high of over 9K once. I think my pots symptoms get a little better with more sodium, but my BP goes up a little and I retain some water. Even 4700 sounds high compared to what daily recommended is. Funny thing is, water seems to calm my GI symptoms a bit... This stuff is totally new. I never thought about how much I drink. I just drink when I feel the need to.

I had AChR in november and it was in the normal range. The reason was for my diplopia as she was testing for MG. Thing is, only 50-71% of people with MG test positive for AChR. I don't know what they do things so piecemeal. Never heard of Celltrend.