JimL

8 hours ago, brainchild said:

Hello @JimL,

Welcome and empathy for you feeling so poorly and being frustrated. I’m new here too, so I’ll share what has helped me. 

Once I was confident that I had POTS, I read a ton (research articles, articles by organizations, forum posts). I started with the recommendations that were common, including increased salt and water intake, elevated the head of my bed, compression stockings, smaller meals, supine exercises, plus a few more minor changes specific to my worst symptoms. I noticed an improvement pretty quickly; not gone, but better management. I’m still in the early phase, but I was concerned how I would be able to keep working as I can’t plan ahead or cognitively function up to par.  I can see how life can be more magaeable.  Again, I’m fresh into treatment, so I don’t know how often flares will disrupt this.

I found doing the stand test at home caused my symptoms to flare. You may be having an increase in symptoms since the tilt test was recent.  Can you get a copy of the results of the tilt test? From what I understand, people either have POTS or orthostatic hypotension, but not both. Your heart rate increase on standing and your constellation of symptoms do sound like they match POTS. But you need to have more information and be cautious with diagnosing yourself.  From what I read, most doctors know nothing about POTS. I had one doctor tell me ‘well your heart rate can go to 120 just running to your car to get something.’ He had no idea what I was talking about.  My cardiologist is aware, but has seen less than 5 POTS patients.  If I were you, I’d review the numbers from the tilt table test, compare that to scientific articles on POTS and OH and then search out a doctor who knows a little something about it. I’ve seen it commented a number of times that an open minded and willing PCP is a better ally than a specialist who dismisses you. 

Once you have confidence that you have POTS, then there is quite a bit you can do for yourself - without a prescription.  I don’t have the gastro symptoms, so I can’t offer much there. From my experience and understanding from reading, calming the whole autonomic nervous system seems to be the root that then helps to alleviate all the branch symptoms (maybe not completely resolve them, but goes a long way to controlling them).  So I think anything you can do ought to help the whole picture to calm down and for you to be more functional and less symptomatic. 

I started with low dose propranolol and I truly believe that it helped with my panic mind set. I, too, was freaking out about how I was going to be able to function in life and where this was going to end up and just generally catastrophizing everything.  It seemed logical at the time. But with a short time (as in less than 2 weeks) of doing as much management as I can at home and taking propranolol, my emotions are coming down off the ceiling. I still ramp up over loss of income, the constant outflow of money for doctors and self help items and life in the future, but it’s becoming a more normal stress response level. 

Can you go back to your previous level at work - give up the no title no pay promotion? Extra stress is not helpful. 

I’m not a physician and I can’t give medical advice.  If I were in your position of likely having a flare post tilt table, I’d go easy with myself for a few days to a week or so. Let house projects wait. Get good sleep, eat well, do any exercising lying on your back and keep it at an easy level. Try to be upright but maybe do mostly sitting; limit time standing. Drink water. If ok for your health, increase salt. I barely used salt before POTS.  Now I’m just at the level of the recommended amount for anyone - which is a huge amount in my mind. So those are things that nearly anyone could do without a doctor’s order. 

I am happy to help you however else I can. If you would like links to articles or guidance finding them, or any to any other info I’ve found, I’m happy to share. 

There are resources and benefits to be had. You’re doing the right thing by asking for help and being open to new information. 

The only things that help are compression stockings and getting off my feet when I get symptomatic. The gastro stuff is an annoyance, the bloating, belching and discomfort/pain. The thing is, POTS can be caused by a lot of different things and without treating the root cause, if one can, it's just treating symptoms. If this is the new normal, I don't know what to say. All of that said, I have issues with my neck as well. I've had fusion c4-6 and my neck doctor says I have to get 2-4 done as the spinal chord has a lot of pressure on it and it could be causing my issues. I found this out today. I want him and my cardiologist to get together. He's pushing for surgery at the end of March or sooner if possible. He doesn't even want me to climb a ladder or do anything where I might fall. I found this out this morning. I am really at a loss. 

8 hours ago, Pistol said:

Hello - and welcome to this forum!!! I am sorry to hear your story, you sure have had a hard time!!! Regarding your GI issues: I have similar problems from POTS and have been through the wringer with tests. I also was prescribed Pantoprazole twice a day. I have Barrett's esophagus ( precancerous changes in the lining of the esophagus ) from the relentless overproduction of acid. What has helped very much is a change in my eating habits and diet: no fresh vegetables, minimal dairy, low acid and several snacks a day rather than 3 meals. This has improved the GI symptoms greatly. -- I also believe that the surgery and subsequent bed rest could have caused your symptoms. Whenever we are not able to get up and exercise for an extended time the body looses the ability to adjust to orthostatic changes and this can lead to tachycardia and orthostatic intolerance as you describe. Slow reconditioning is the key. Have you considered seeing a physical therapist? They can advise you on exercises that are safe to do with your back but increase your resistance to orthostasis. Several members on this forum ( myself included ) have found improvement from daily targeted exercises. -- Also: the TTT should show if you have POTS or orthostatic hypotension. Most of the people on this forum have been referred for  treatment by an autonomic specialist., there is a physician directory on this site if you are interested. Please keep us posted on your progress! Be well!

I was up pretty quickly after surgery and got active. I think I averaged about 2.6 mile a day when I was out. The only complication I had was a CSF leak. What a headache the next day when they sat me up. Holy smokes, I would have ended it there if it kept up. They laid me down head low and it went away and hasn't returned. The POTS thing started about 2 months or nearly so after the surgery. I am at a loss. I am on 25mg metoprolol now and was on a bigger dose over several years. I never had gastro problems before either. I could drink gasoline and pee ice cubes. Nothing phased me. Now I get disgusted just thinking about my favorite foods. Nothing sits right in my stomach.

I was supposed to go to a PT for my back but canceled when I got this POTS stuff as I can't be on my feet for extended periods. Passing out on the tilt table really freaked me out and I haven't  felt right since or better put, my POTS is a little worse. 

11 hours ago, Stark said:

Do you have EDS? Your numerous spine issues could point towards this. It is often comorbid with POTS

I don't think so. I am 56 and never had issues before, at least not like this. I did have a huge growth spurt between 9th and 10th grade where I grew 5" over the summer and I was very premature, born feb 26 due may 12, but I never thought I had genetic problems per se. 

15 hours ago, Hutch said:

Did you have lots of bed rest from recovery from your surgery? They say that can cause pots, also depending what drugs you went under, for surgery can miss up the  nervous system. People can end up with pots after surgery. Seems you have a lot of possible things that could have triggered it.

No. I was actually more active during my time off in general than I am back at work. I actually walked 4 miles inside my house one day. I know they used ketamine when they put me under. Never had that before. Never want to again. My back surgery was two part. The anterior day 1 and day 2 the posterior. The latter was tougher. 

Thanks in advance for replies and advice. I'll try to keep this as brief and to the point as possible. 

late May 2018 I started having stomach issues out of the blue. Abdominal pain, especially an hour after I ate. Went to do, had CT scan, nothing wrong other than enlarged prostate, minor left inguinal hernia and a solitary lung nodule, 13mm very low in the lung, probable granuloma. Ok. Went back to the doc again still complaining and basically they told me all my labs were great, I'd lost over 130lbs at the time and I should be happy. I went to bariatric doc (I had a lapband put in 2009 in Iowa now live in AZ, but that's not how I lost weight, used Keto) in July and he took the fluid out of my band and then did a EGD. H Pylori and gastritis. 12 day treatment and after symptoms came back. breath test was negative. He ordered upper GI and had mild esophageal dismobility. Said lets take the Lapland out. That was early September.  Around this time (August) I had come down with patulous eustachian tube on the left side and I started getting tingling in my feet beginning of September . By the third week of September I was scheduled for the Lapland removal. The tingling also moved up my leg and I started walking goofy. Went to new PCP as I ditched the guy that said I should be happy and he said I had foot drop and symptoms of lumbar problems. I also started getting double vision.  Anyway, had the lapband out and some of the gastric problems got a little better. I had been belching all the time like a steam engine, then less. Still had stomach discomfort and felt off. Lumbar issues turned out to be stenosis, bad disks and bone spurs. Stenosis so bad that my spinal chord disappeared on the MRI at L4-5. Surgery scheduled for October 30. I also had a neck MRI as I had a cervical fusion 6 years before. Stomach issues continue after spine surgery which required 6 weeks home recovery. Went to ophthalmologist for the diplopia. More tests and yes I have diplopia but doesn't know why. Did one test for myasthenia gravis which was negative. Had MRI of brain and that was ok. Paid for my own ANA/CRP/ESR/TNF test which were normal. Went to gastro doc who just doubled my lansoprazole dose to 2x a day. Ophthalmologist refers me to the Mayo Clinic to a neuroophthamologist, who I am seeing this Thursday. Yes, it took this long. Went back to work 2nd week of Dec having exhausted all my vacation and sick time and around Christmas I had heart palpitations and shortness of breath. I went to the ER and I didn't have a HA and they sent me home. Two weeks later same think when I was driving. Had an accident. Went to hospital. Nothing wrong was found. They referred me to a cardiologist who did a calcium scoring, echo, nuclear stress test, coronary CT yesterday and tilt table test today. He seems more on the ball. The echo was ok, but the nuclear stress test was inconclusive as my heart rate went nuts pretty quickly on the treadmill and I couldn't do it long. Understand that not that long ago, only 5 months or so I was hiking 21 miles a week and was getting in great shape. I liked hiking and had planned to do one of those spartan runs. He mutters othostatic hypotension when I was on the treadmill. Still have gastro issues and in fact last week my PCP decided to treat me for h pylori again thinking that is causing my problems. Still have diplopia. My left eye is off a bit, the image off diagonally down. Still have the symptoms of rapid heart beat on standing and walking, headaches when up and not feeling right. If I lay down, my heart rate can be 58-65 resting. Standing up, 100 or more depending on how long. I did the tilt table which freaked me out. They gave me nitro after 25 minutes and 5 minutes later it was lights out. I've never experienced anything like that. I felt it coming though. That nitro made me feel flush in my torso. I don't know why this is happening to me. Looking at the DI website, it could be a dozen different things. Doctors have become a disappointment to me. When I lived in NY, I had a dynamite internist that did his residency at Bellvue and was sharp. The PCPs out here just want to prescribe and look at metabolic panels. Maybe I get 15 minutes with them. I am made to feel like a hypochondriac. The only thing that has improved a bit is my foot drop. Other than that, I have the same gastro issues and more, like it takes longer to get through me/constipation. Belching, short of breath at times if I am up, like my epiglottis is confused, headaches and neck shoulder pain/stiffness sometimes. I wonder if I have some autoimmune disease they are missing or that the h pylori caused something along those lines or that I have some sort of paraneoplastic syndrome. Because I have had a lot of doctor visits and I've taken some time off when I don't feel well, I have almost no time left at work. On top of this, they made me a supervisor a couple weeks before my spine surgery last fall and I am not digging it. No extra pay or title. Just feeling like there's little upside lately. Where do I go from here? Judging from today's table tilt test, I would think I have POTS. Why, I don't know.  Any advice would be helpful. Informationally, I do wear thigh high and full height compression stockings now. It helps, but after the tilt table today, my heart rate didn't settle down so well. I actually thought I was doing a little better, do a few things around the house on the weekend and now I feel set back and exhausted. I am on low doses of metoprolol and lisinopril and 75mcg of Synthroid, but that's it other than vitamins. Thanks for your patience in reading this and letting me dump a bit.