JimL

I asked this in another thread of someone else, so forgive me. What changes in your diet did you make? My emination has slowed and more effort. I've tried more fiber and it doesn't always make things better. It's like I can't find food that seems to make a difference. I lost a lot of weight before POTS, down 170ish now. My gastro wants to do an EGD and colonoscopy, but I have cervical fusion next week and I can't or shouldn't be knocked out within 30 days of the surgery. So I have to wait. Last night I woke up with abdomen pain on both sides.

I have GI symptoms, but slower emination and constipation. What diet changes did you make? I've tried more fiber and sometimes that can make it worse. Used to love greek salads, now they bother me. Woke up last night with pain on both side of my abdomen.

I thought OI is another word for POTS. When my cardiologist said OI, I said is that POTS and he said yes. The question I have is, why?

I was sent to an EP and he said something similar, but that he couldn't really help...So I got an appointment with a neurologist that specializes in POTS/dysautonomia. That said, the tilt test is to record what happens when the change one's position from horizontal to near vertical. Passing out on the TTT isn't fun.

Things can change quickly. Last May I was on top of the world and it's turned to manure since. It sucks adjusting to the new normal.

It sounds like rejection of claims at SSDI is proforma unless it's terminal. That's a h*** of a way to evaluate.

I had L4-5 laminectomy and fusion last fall where they said they found a CSF leak from a bone spur. I have to wonder if it was iatrogenic. Anyway, he stitched it and used a blood patch, but I had one of those whopper headaches the day after the surgery. I haven't had that since, but I devoped POTS 2 months later.

I have to wonder what the consequences are when metrics and money come before patients/customers? I will tell the anaesthetist for sure. I have my pre-op check up today as well as a pre-surgery consult with the surgeon. I've just felt so crummy lately. It's a travail just going on doctors visits.

Did a doctor give you a diagnosis? https://www.disability-benefits-help.org/disabling-conditions/neurological-disorders https://www.disabilitysecrets.com/topics/neurological-problems I can't find anything specific for POTS, my guess is that a doctor would have to tell you the underlying condition and then that would have to be acceptable to SS. https://www.disabilitysecrets.com/what-conditions-qualify.html Seems there is a blue book. You may want to find an attorney that does that kind of law that will work on contingency.

I had oxy 2x when I got home and for 3 weeks after just tylenol. I dont take anything for pain now or since. The only meds I am on are synthroid, metoprolol, lisinopril, esomeprosole and sucralfate. I take a multivitamin, vitamin C and D daily. That's it. I did have an issue from the anaestesia in that it slowed my bowels down. They were giving me pill laxitives which were doing nothing or next to nothing. I was really worried because I didn't go in 4 days. I told them to give me magnesium citrate liquid and that did it. Should have done that from the start. They don't listen to patients. Thats the frustration I've come to have most with the medical profession in the last year. Dr William Osler who is considered the father of modern medicine said that if you listen to the patient, they will give you the diagnosis. It's lost on medical professionals today. That said, I haven't been to a POTS specialist yet, I am scheduled for May 21. That's the earliest I could schedule and next week I have more surgery, more cervical fusion. When they did my lower spine, they used Ketamine in addition to the other stuff. I have to wonder if that did something. I had a weird reaction after the surgery, like hallucinating. Never had that before or since.

After my spine surgery last October my bowels seemed to slow down a lot and never got better.

What's that like? My GI has slowed down and takes more effort to get out even if it doesn't look like it should.

I am waiting for it to warm up a bit so I can use the pool. Another month or so and I will. Swim on my back for an hour a day.

It makes a difference to find people that understand. I found a local FB group as well. Maybe you can check that out. Now if only PCPs would get it. The truth is we are where CFS and FM were 25 years ago. Doctors have a habit of putting it in our head if they can't figure it out.

The interesting thing is that after my back surgery, I was up and when I got home, I got up every 1-2 hours to walk. By the time I went back to work I was up to 2.6 miles total a day and two weeks after being back to work it started. The only other thing that comes to mind is that I had a brain MRI with contrast. Then again, the S Show started before that. The only things I can think of before the gastro issues which started it all was that I went to florida a few weeks before, I had undercooked fish a week before and I had started running on a treadmill. I also did some construction in the house redoing a shower and I had to rip out termite damage and there was mold too. I sprayed everything down with bleach though. Nothing else sticks out. I wish I had my old life back.

There are many factors that can cause POTS and it could be your symptoms are consistent with one of those underlying causes. There are several autoimmune diseases that can cause POTS. What does your doctor say? As far as the tilt table, did they tell you the results? I have a lot of the same symptoms, GI, sometime palpitations, neuropathy, headaches and diplopia or double vision, high heart rate standing, but not doing much, goes back to normal if I lay down. I also get patulous eustachian tube on the left side and have joint pain in wrists and pain/fatigue in arms. Finding a doctor that gets it is key. You can check out here: http://www.dysautonomiainternational.org/page.php?ID=30 and here: http://www.dysautonomiainternational.org/page.php?ID=150

It helps people with PTSD and trauma. I did it before I had POTS. I think it could help you. Some therapist's that do CBT do EMDR. If your therapist is in the Albert Ellis school, they know what it is.

Cool. Does the therapist do EMDR?

I had laminectomy and fusion L4-5 2 months prior to this. Not sure if it's related. I also had GI issues and came down with diplopia before the operation. I think something is going on with my body that isn't right.

Have you tried cognitive behavioral therapy?

When I did the TTT I had it bad. I could feel the syncope coming and then I was out. I try to limit my being up no more than 30 minutes at a time and pay attention to the signs. When the HR gets high, I get antsy/dread.

Ok. My PCP sent me to a vascular guy who is doing the whole workup. I had a duplex ultrasound of my abdominal aorta and carotids this week and next week I have bilateral venous LE and IVC filter check. The week after temporal arteries. He noticed my feet were cold and that I didn't have a strong pulse in my feet. I don't know if that's normal for POTS. Unfortunately, my appointment with the POTS neurologist isn't for a couple months. Just trying to learn how to cope with this.

Metoprolol will lower heart rate and it is a beta blocker. 38 is way low.

I've read that in some cases the nervous system doesn't make the veins contract to raise BP and the heart beats faster to compensate. Maybe that's an oversimplification. I know my feet have been colder and sometimes my hands as well.

So far, I've gotten the crazy looks or at best, go through the motions of whatever tests they happen to do. One problem I see with specialists is that they don't take the whole body into consideration. If you go to a GI guy, you have a GI problem causing it, Cardiologist, a heart problems, etc. A good internist should be able to put the pieces together, but with 10-15 minutes per patient, it doesn't lend itself to deep discovery.