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Pots Recovery

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Hi. I'm a new member in the forum and found great value in looking at posts last year when I was first diagnosed and the forum was public. Sorry to have been a stalker; for various reasons was not comfortable joining then.

I just wanted to share my experience because some of you were so helpful to me in the early stages of my illness and perhaps this can help someone else. (I am a writer but am pressed for time so please forgive any bumbles or oversights.) I rarely check dinet now. However, if there are follow-up questions I will do my best to answer.

I was diagnosed with POTS in March 2013 at age 48 after several months of bizarre symptoms that many here know too well -- heart racing, dizziness, weakness, shakiness, insomnia, fatigue, confusion. The first few months were absolute ****. After I came downstairs in the morning I barely went up again until it was bedtime. I could not drive or think. I was determined to not have my kids see me seeming too sick, so I showered even though I thought I might die in there and while I couldn't really "clean" the house I made sure it wasn't gross.

Anyhow, after trying a few medications and consulting with a neurologist in Buffalo - first by phone, then by visit in May - we found a mix that seemed to help. I am on very low doses of atenolol, midodrine and Paxil, plus salt tabs, a multivitamin and vitamin D. Initially was on hefty dose of anti-anxiety meds to get my sleep and the sympathetic nervous system under control but am now on next to nothing there.

I had just about every blood test and scan imaginable but no cause was found. The theory is that a combination of hormonal changes, trauma (huge losses in past few years, including the death of both parents), and maybe blood sugar fluctuations are at the root of my POTS. I am not aware of a virus having preceded this. I think I might have had very mild POTS for a long time before the acute onset- I experienced dizziness and various things off and on for years, especially in the mornings.

The doctors kept telling me to be patient but that was very difficult in the first months. It's hard to even recall all of the strange turns this illness took; for a while it was as if the right side of my head was having spasms and I thought I was having a stroke. In a different spell I felt I couldn't get enough air.

Anyhow, I kept looking for stories of recovery and focused on the little that I could control. It helped a lot to have a friend who many years ago had a terrible bout with Chron's. Different illness but she completely understood everything that goes with a severe health setback and I could talk to her and she didn't get freaked out/tell me what to do/tell me I was wrong, etc. She also helped me begin to get out of the house for normal stuff again. With the isolated nature of my work and my focus on the kids over the years, I had little to no social support.

I did the floor exercises outlined in the POTS/Rhum book and used a floor pedaler (about $100 online). At first if I exerted too much I paid the price for days. I remember one day fairly early in the illness when I tried to function semi-normally - sat at my desk a lot, walked a few paces, was up and down the stairs in the house - and by late afternoon my legs were numb and tingling all over and I could barely stand. Terrifying! It was very hard to believe the doctors' theories that I would improve but I clinged to that. It seemed to take months before my muscles even had any feeling. It probably was nine months before I really could walk more than a tenth of a mile.

I still have a long way to go but compared with a year ago I'm phenomenally improved. I don't do so great in the morning- still don't want to drive until the afternoon- but I can be up and down the stairs with laundry, at my desk all day, run errands and get out for walks in the afternoon and evenings. I can push myself harder with exercise (walking interspersed with light jog, the floor work/isometrics, and light weights) without suffering for days afterward.

Exercise has been a huge component in improvement, I think. The other pieces for me have been proper meds and time. Also, I seem to feel better when I avoid gluten and sweets. And there is a tremendous mental aspect--maintaining a mindset of pushing myself and not letting the illness take me down. I made a decision early to read about recovery rather than get caught up in maybes or having other people's bad experiences in my head. One poster on here was a particular inspiration- I think her username was lemons2lemonade. I printed out her story of recovery and for a while was reading it every day.

I was lucky that my cardiologist is familiar with POTS and my primary care doc was willing to learn about it and communicate a great deal with him. In the early weeks I called my cardiologist with questions every day- and he always took the time to talk to me! As you might know, many medical professionals look at you like you are from Mars when you try to describe POTS.

Also was lucky that my cardiologist knew Dr. Blitshteyn, a neurologist in Buffalo, about an hour away. She made an enormous difference and if you are in a remote area and can't find a doc knowledgable about POTS I highly recommend at least a call with her. I have continued with phone consults with her - have been able to ask questions and get a lot of encouragement and reassurance; she is very positive. At first I had calls with her probably every two weeks! It costs money but was a worthwhile investment for me.

Nobody can say for sure how anything is going to turn out for someone with POTS, which is frustrating, but I am telling myself that in a year I'll be *close* to normal. I didn't think that would be the case when this first all hit.

WARM WISHES for everyone.

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Thanks for the comments-

I neglected to mention a couple of things... I stopped obsessing about my heart rate and blood pressure. (I think lemons2lemonade said something about that--grateful.) I try to function according to how I feel rather than the numbers because after obsessing for months on the numbers it became clear that nothing deadly was happening and that it was an unproductive focus. Although functioning according to how I feel can be tricky so I tend to push unless I feel really rotten.

Another thing - Dr. Blitshteyn told me to give myself a break when I need it. I currently work from home so I am able to lie down for 30 minutes or so midday, sometimes again late afternoon. Also I skimmed a bit about the meds- there was a lot of trial and error--florinef, nadolol, different antidepressants. My docs generally had the attitude that if something didn't seem to help fairly quickly it made sense to dump it and move on.

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Thank you for posting your story. I am sure it resonates with many others as it did for me.

Quick question: I am wondering about the Vit D? Many of us are low and many have had problems taking it. Have you found that it helped you and any specific symptoms?

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Hi - I can't say that I noticed anything directly from the vitamin D, good or bad. I know that my D level was pretty insanely low last year at this time. Haven't had it checked in a while but last time it was in the low-normal range. A highly respected naturopath I saw at one pointed wanted me to take 5,000 IU in addition to the multivitamin but that seemed excessive so I've taken either 1k or 2k IU in addition to the multi.

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Hi again... I thought about this some more. What kind of problems do people have with vitamin D? Is it gastro? I didn't get into this earlier but I had a lot of intestinal weirdness for a while. I am not sure why it settled, but I suspect the Paxil helped because it began to get me back into a regular sleep cycle. My entire system was completely overcharged even though I was weak and exhausted.

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Not sure of I'm answering your question about D, but it is a fat soluble vitamin and it's not uncommon for people with gi issues to be deficient for that reason. It's really more of a hormone that can be made by our liver. When you don't feel well it's hard to get enough sunshine.

I was deficient in D and other nutrients when I had "IBS". Of course my IBS was a problem with gluten.

When my D was low I had more fibro pain, and I think my hair was shedding too much. deficiency can also increase migraine pain, cause weight gain, and affect sleep.

It's one thing that you can easily overdo with supplementation so I'd suggest a blood test before taking too much. If you do supplement you want the D3 form not D2.

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  • 3 months later...

Hi. I thought I should provide an update. Things were going so well. Not sure I can unravel it all - not sure anyone can- but began taking a downturn at the end of May and am in a flare. Maybe a follow-up here would be helpful to others because I think I pushed too hard for too long. Again, guesswork but things were going great and I might have had too much of a mentality of "mind over matter." I ignored some signals - fatigue, weakness, etc- and kept doing things as I pleased. I also encountered some severe emotional stressers. And since I went down on the Paxil in early February I wonder whether there was a serotonin or other chemical issue. Plus some phenomenal heat and humidity came our way. Now fiddling with meds, seeing docs, etc. - fun fun fun. : )

Warm wishes for good days to all.

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I did not realize who your doctor was until I found one of her research studies on POTS and the G vaccine. What other things are you looking into? Have you been checked for HyperPOTS? POTS is a rollarcoaster of a ride and your doctor is learning the ups and downs of this disease from you. Hang in there.

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