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. 

On 4/6/2019 at 11:22 AM, aelizabeth3300 said:

@JimL Thank you so much for sharing that link. It's actually very helpful!

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. 

59 minutes ago, KiminOrlando said:

Lung is different than pituitary. The oral med is for pituitary granulomas and it doesn't always work. 

I have rheumatoids in my lungs. They aren't going to do anything about it. Sometimes it is best to leave stuff alone because the process of 'fixing' it is worse than the original problem.

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

15 hours ago, KiminOrlando said:

If it is a granuloma, they may try oral meds to make it go away. I went through something similar. 

It sounds scary, but don't freak out yet.

Of course I'm a hypocrite. I freaked out too. Turned out it was for no reason.

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. 

7 hours ago, bombsh3ll said:

Yuk! I've heard magnesium comes in enemas too, although I don't think they are used here in the UK.

Anyway glad to see you back on here after your surgery Jim, how did it go?

B xxx

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?

On 3/27/2019 at 1:37 PM, Pistol said:

Dear @JimL - I wish you best of luck with your surgery!!!! Please keep us posted on your recovery!!!

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. 

On 3/28/2019 at 12:19 PM, bombsh3ll said:

I take half a teaspoon of mag citrate powder most nights mixed in a drink. It is tasteless when added to something like chocolate milkshake or a smoothie. 

I understand that both high sympathetic activation (typically the case in POTS) and licorice root/florinef (I took the former until recently) can deplete it. 

The only symptomatic difference for me is it relieves constipation which I am prone to. It can certainly lead to diarrhea if you are sensitive or take too much. 

Some people also report it helping with palpitations although I haven't found that personally.

B x

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

2 minutes ago, MomtoGiuliana said:

@JimL b/c of the gastric band, have you been tested for vitamin deficiencies?  I was found to be B12 deficient last year (I am a vegetarian but it never occurred to me or my doctor this is a risk factor for low B12--as is generally getting older!).  People who have had gastric surgery are also at increased risk from what I read at the time.  I had no idea what a toll low B12 can take on your nervous system.  I had a severe POTS relapse last year that disabled me for 2 months--it included a lot of digestive problems which I had not had before with POTS.  Do you take a B12 supplement?  You may want to have your B12 level tested and consider taking supplements anyway even if you are not found officially deficient.  B12, from everything I have read, is safe to take in large amounts b/c it is water soluble.  Apologies if this has already been discussed elsewhere in the forum with you.

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. 

27 minutes ago, bombsh3ll said:

JimL,

There are case reports of other patients developing dysautonomia following massive weight loss (achieved by gastric band/bypass etc). This could be something to look into for you. 

PS best wishes with your surgery

B x

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. 

3 minutes ago, p8d said:

@jklass44I think the EMG was to rule out something, possibly Parkinson’s but I am not sure about that.  I think in cases where dys comes on post viral, suddenly, autoimmune diseases should be ruled out.  Many such diseases are kicked off this way.  In my case that’s exactly what happened and my maternal family, especially my mother, who has 4 autoimmune diseases.  My mom’s started after a tick bite. I think a fair amount of the research is finding a link between dys and autoimmunity.

@JimLI think it’s 1-2mm per month not day but I am not sure.  It’s extremely slow whatever it is.

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

3 hours ago, RecipeForDisaster said:

Sorry, should have clarified, I was gradually taken off all 3 hypertension meds years ago as my BP fell to half of what it was. I can't manage to keep my BP up without them! 

 

That's the million dollar question.... nothing in my life changed at all between 150/90 on 3 meds and 70/35 without the meds. I'd love to know why. I probably shouldn't have been hypertensive as an active, healthy eating teen anyway....

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. 

1 hour ago, Pistol said:

@RecipeForDisaster - if you used to be hypertensive and now are hypotensive - is it your meds causing that? And if so - could they be adjusted? What brought on the change in your BP to swing from one extreme to the other? 

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. 

1 hour ago, p8d said:

@Pistolshe’s talking about the peripheral nerves that are being attacked by the autoantibodies.  In my case the a-1 adregenic autoantibodies are attacking the nerves that tell your peripheral blood vessels to constrict on being upright.  At least that’s what I think it is. Nothing to do with the shingles shot, sorry to be unclear.  When we discussed the blood pooling I said I think that it’s not going up my legs as far, we’re talking centimeters here, and she said it makes sense because the nerves demylate from the toes up the legs so if the nerves are re-growing they go the opposite way, from the central to peripheral and reach the toes last.  Nerves regrow extremely slowly though.  Is that clear as mud? 

1 hour ago, p8d said:

@Pistolshe’s talking about the peripheral nerves that are being attacked by the autoantibodies.  In my case the a-1 adregenic autoantibodies are attacking the nerves that tell your peripheral blood vessels to constrict on being upright.  At least that’s what I think it is. Nothing to do with the shingles shot, sorry to be unclear.  When we discussed the blood pooling I said I think that it’s not going up my legs as far, we’re talking centimeters here, and she said it makes sense because the nerves demylate from the toes up the legs so if the nerves are re-growing they go the opposite way, from the central to peripheral and reach the toes last.  Nerves regrow extremely slowly though.  Is that clear as mud? 

I think 1-2mm a day. 

6 hours ago, Pistol said:

@RecipeForDisaster I too rarely feel the need to drink, except for first thing in the morning ( I am up peeing all night ). When I used to drink 2-3 liters a day along with lots of salt I just peed it all out, it never did anything to my POTS symptoms. In addition the fluid would add to my stomach problems and make me feel very full all the time. IV fluids are definitely the way to go in my case as well. The results are IMMEDIATE and LASTING!!!! With drinking fluids my BP was till high - with IV fluids my BP is normal to low and I can manage ( and feel ) a lot better. 

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. 

22 minutes ago, bombsh3ll said:

I am interested in the Celltrend panel myself as I was only tested for AChR antibodies at the UK's only public autonomic center. Which of yours showed positive and what was the treatment offered if any & has it helped?

B x

 

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.