writerlymom

Thanks Katybug, I'll look into those. Lewis, your experience is interesting. My neurologist said they have only theories on the reason for morning trouble for many people- that it may be a function of lying down all night, dehydration since we're not drinking when we sleep, or a mixup of day and night hormones. Your experience seems to point to the hormone theory. My cardiologist suggested trying to be more active in the morning, that getting the blood pumping helps. I have seen that elsewhere too. Nothing seems to make a difference for me. I do move around early in the day and have tried exercising too.

Hi- I just wondered if anyone has found strategies or medications that really help with the mornings and early part of the day. I usually start feeling better around 3 p.m....by 8 I'm usually almost good, and it's just about time to finish up the day and start over! Unfortunately my current life doesn't let me just switch to being a night owl. Am completely burned out on this Groundhog Day effect!

My cardiologist told me recently that 80 percent of the time they can't determine the underlying cause. I don't remember the percentage breakdown of the known causes: virus, autoimmune problem, rare cancer. For me all they have are theories: hormonal changes (perimenopause), extreme emotional trauma, and possibly blood sugar issues.

I don't have any especially useful advice but just wanted to say congratulations on the new job and I really applaud you! I work from home and am impressed you have been managing up to 50 hours a week. Agree with DeGenesis on checking into disability regulations for your state or province and on not getting too technical in the explanation. One useful thing someone told me is that so many people are navigating one thing or another that you don't need to feel terribly self conscious about it. Good luck and good for you!

Thanks- wish there were something like that nearby!

Macca, hi, how did you find an exercise physiologist familiar with POTS? I have been wanting to find a trainer who really knows this condition. It would be nice to have more guidance on what to do.

Hi Andy- It can be phenomenally discouraging at times, and it is a tremendous test of patience. As someone else said, people who get better tend to not be on the forum much. I'm doing a lot better than when I became ill more than a year ago and haven't been on here in several weeks, I just check in now and then. My doctor told me emphatically that the rule is improvement. I'm not sure what's missing in your puzzle- unfortunately with POTS I think there are more unknowns than knowns- but you could consider a phone consult with Dr. Blitshteyn in Buffalo or find a holistic doc in your area-there is one near me who will run lots of tests to check for gut, adrenal, etc., problems that other doctors won't do. The activity piece is SO tricky because I think POTS wants to trick us into doing nothing. It's a real struggle to exercise, especially when you're practically bedridden, but it pays off in the long run. Last year around this time I struggled to just do little walks around the room. Now I walk about three quarters of a mile alternating 2 to 3 mph at 1 minute intervals- not a sprinter or marathoner for sure but progress. Also do leg machines at the gym, just light weights. Not sure what kind of exercise you're doing but I think it's important to be gradual. Anyhow- try not to let POTS play its mental games on you. Sounds like you have a terrific girlfriend. Focus as much as possible on the positives. You'll be OK.

Could be gluten in the soy...I also know someone with POTS who is affected by maltodextrin or other preservatives, which are in a lot of foods.

I was tested and negative for celiac but have gone mostly gluten free on a naturopath's suggestion. I tend to feel better when I don't eat it and some minor skin irritations that I used to have cleared up. Not sure if the skin stuff is just coincidence... and gluten-free probably means lower carbs in general, so that could be why I feel better without it.

There are recommended exercises, from beginner to advanced, specifically tailored to POTS patients in the book POTS: Together We Stand/Riding the Waves of Dysautonomia. Author is Jodi Epstein Rhum. The beginner exercises were helpful to me in getting back on my feet. Good luck and enjoy your baby!

Completely agree with KJay- important not to scare people. Anxiety makes POTS worse. And POTS absolutely has one freaky thing after another happen. Sounds like blondie appropriately was checked out at the nurse and touched base with cardiologist. Hard to imagine a cardiologist dismissing something potentially serious. Blondie, if you're still worried about it- go get checked out - and if you're not comfortable with your doc find a new one as soon as you can. No one on here knows your situation as well as you and your doctors.

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.

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.

Thanks for sharing this and for earlier posts on your progress. A post you made last year was incredibly helpful to me. I was not a member of the forum then but the posts must have been public. I did Google searches for things like "I recovered from POTS" and "POTS recovery" and yours was one of the most helpful accounts. I printed it out and read it every day when I was at my worst, and it helped me to push forward. It was hard to find real stories of improvement. I've made a lot of progress. THANK YOU.

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.

If you can't find someone close to you, you can do a phone consult with Svetlana Blitshteyn MD in Buffalo. She has a web site.

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.