Relax86

I too saw a huge improvement with exercise. I weight trained with light weights and built up from there. I added light cardio (15min) on treadmill. I feel much better overall; my best days are those that follow the treadmill. When I skip the treadmill too often I have "off" days.

Glad you're still updating, I was wondering how you were doing

Thanks. I'm staying on the advil to keep down inflammation. I recently read that Carotidynia occurs more in the winter time so I'm just going to keep on pluggin along here. I'm due to have some autoimmune bloodwork (waiting until next week so I can work thru the Christmas week since bloodwork pretty much slumps me over)...once the bloodwork is done I might add a little bit of the HC back into my plan for a few weeks. We shall see. I have never tried a beta blocker. I usually have low BP's and borderline tachy. Yesterday was a tachy day with no air...go figure. Happens every time I post that I'm 85% better. :-) Also, I'm a big Peter Gabriel fan

This forum offers hope, it takes away fear, it empowers where often the medical community or friends/family don't fully understand. Finding this group that has suggestions, is well educated and supportive truly helps with recovery and acceptance. And when you find a poster or 2 or 10 who has symptoms just like yours you can trade ideas or just silently feel relieved that you're not going crazy. Good luck!!

Anyone experience these symptoms, been diagnosed? One of my more prevalent remaining symptoms of my POTs flare is symptoms that are similar to Carotidynia. I have only R sided ear pain, neck pain....when it gets really flared then I get lightheaded, head feels like I'm descending too quickly in an airplane (is this cerebral hypoperfusion?). I think technically I no longer fit the criteria of POTs as my HR resting is around 86-92 and when I tach it's only about 105...My discomfort level is great once I get to 96 but my numbers are still much lower than most of you folks. I still have some stomach pain, bloating, urinary pressure, adrenaline spikes at night and fatigue, very occasional pre syncope only. Compared to Jan/Feb of 2012 I am much better. It's surprising what we can learn to live with. It just feels like this vessel is not functioning and I have begun to notice R arm weakness, a little bit of tingling, and my vessels in that hand and arm just pop out on occasion and they feel hot!! These symptoms I believe were much better when I was dosing with hydrocortisone which I've successfully weaned. I use 2 advil in am and 2 in pm to control. If I decide not to take the pm dose then my body knows it. I would love to jump back on HC for a little during my flare months but I'm just about to start some testing with a new rheumatologist and I don't want to have HC in my system Any thoughts?

My BP has stabilized back to my norm....my HR improved as a result. Still get tachy flares in the middle of the night. Also about an hour into sleeping I wake up tachy and can feel my neck pulsating. Carotid doppler neg. Generally about 85% better but plateaued at this time; HOWEVER this is my flare season so I'm hoping that if I can get thru Jan/Feb then I might see some more improvement in what has been my worst flare ever.

I myself recently had positive autoimmune bloodwork. Plan to see the immunu people Friday. Despite being 85% better I would like to know a little more about my cause. I don't know what type but I got better anyway. My POTs flares are usually every 3 years, seemingly 1st to 2nd week in January. It's my holiday crash?? The crash of 2012 being my worst by a long shot. I believe b/c I succumbed to a 4 day hospitalization which was full of bloodwork, mistakes in my bloodwork and lost bloodwork requiring too too many blood draws. I think it took months to rebuild my blood supply and the rest of my ANS is still trying to re-group. I did get smarter this time thanks to the forum. I'll look for continued updates from Issie's dietary changes.

With my subsequent flare I went medical crazed - testing and bloodwork, lots and lots of bloodwork. Then I couldn't get up and for a little while I didn't. But I realized early that my body was fading and I set small, daily goals for movement, was medically cleared for exercise and slowly started to incorporate (some days was just 5 minute bouts), got some outside time (even though I wanted to stay in) and used HC for inflammation. I also succumbed to the use of midrodine as I am a low BP Pots and later was able to wean from the meds. I had 2 years of decent health b/t flares. Made a job change and with that change had new hours, different diet, forgetting iron pills, no tanning/sunshine. Passed out and ended up in the hospital and they crushed me with bloodwork which I was approving so they could find something. Later the pieces came together for me that the bloodwork significantly increased my flare therefore my recovery. I am about 80- 85% recovered; it's been a year; I do feel a little plateaued. Hoping this flare didn't cost me in terms of full recovery because I did make a full recovery b/t 2009 and 2011. Water, meditation, positive thoughts, this forum to keep anxiety low (because at some point we all think we might be a little crazy), and some faith. You can feel better again. Good luck

I guzzle water, splash my face with ice cold water and then go into the deepest meditation that I can manage. **** Warning!!! Weird POTs post**** Also, and I know this is strange - I sometimes just try and use the bathroom. For some reason if I have to pee/BM and I don't go right away i get surges. I'm in the medical field and used to holding which is a bad habit. But sometimes remembering to pee helps. Good luck

Also interested. I have brutal cycles that contribute to anemia.

No trauma here, but poll won't let me post

Being in the hospital cost me big time with this bout of POTs. I attribute that to all the bloodwork. I need my blood volume up to function. It took months before I felt better. My philosophy was Keep moving - slow and steady. Good luck.

congrats!! great news :-)

Congratulations!! I'm inspired by your will to achieve your goals and get well. Super news

Naomi ~ this was a great post. I loved it; very amused at how you wrote it. Sorry for the continued ignorance of the medical community. So bad when med school means you no longer need to keep learning.

POTs changed my coffee habit considerably. Prior to my crash I was using it to keep upright. Post crash, I eliminated all caffeine unsure of why i was tachy, had OI, severe abdominal issues and internal tremors. I reintroduced coffee and now like the first cup and seem much better if I have the second cup right after lunch. I have stomach issues due to the salt, double iron and high vit D; have always had stomach issues but this year have been way more exaggerated and unpredictable.

I'm feeling about 80-95% recovered/recovering. I've re-read my posts and I see that I change that number...not meaning to misrepresent myself but I think it depends on the day. I also feel like my tolerance for symptoms is so much better that what I now consider a good day would be crap for a non POTs person. Seriously??? We tolerate a lot!! But I also worry when the floor is going to drop out from under me. I make every effort to live in the moment. Knowing that some of the folks on this forum would love just one day like mine. But the fear of going backwards, or symptoms hitting my like a rock constantly creep into my head. There was no answer as to why it happened, I'm not 100% sure how I got it to subside. Just wanted to say that I relate to mixed emotions with good days. Good luck to all

I take a high dose of D and was still deficient. I tan once a week. Never did I abuse my skin in the sun, but honestly it helps support the vitamin and gives me some color that POTs takes away.

I used hydrocortisone which helped tremendously. I was extremely cautious with it; and often felt like I could benefit from dosing higher but I understand the adrenal consequences and shot low with my dosage. I used it for a few weeks and felt much better at 10mg at 8am, and 5more at 1pm...I weaned and felt so much worse in less than 2 weeks. I jumped back on it and stayed with it for about 5 months.....successfully and slowly weaned. I would use it again in a second. It was the only med that made me feel like it was fixing the problem and not just treating a symptom.

It raised my BP immediately which was the cause of my lightheadedness; therefore I had a positive effect immediately. I took 2.5mg at 8am and 2pm. That was the dose that worked for me. I am extremely sensitive to all meds though.

I reluctantly and very carefully weaned from hydrocortisone b/c some Doc's believe that you can shut down your adrenals...as your body will not make it's own as I use the supplement. Another of my Doc's felt that low dose was not harmful and it was allowing my adrenals to rest from being fatigued (this drove my first endo absolutely nuts). So in my quest to avoid giving myself Addisons disease I weaned when I felt like a had a chance at not having my body crash right back into a POTS flare. I had weaned in April only to find myself severely POTsy again in May. Now that I'm off of it I feel happy to be med-free and that my body was in fact ready. If I ever have another flare I would jump back on it in a heart beat. Only people with POTs know how unbelievably sh*tty it is - and I refuse to suffer since I have found something that helps support my recovery. I just wish I knew my cause...hopefully my next appt will help me put together the pieces.

I also found relief with Hydrocortisone. I credit the drug for my recovery. I have since weaned as most of my Doc's swear it's doing more harm than good. But when your BP is in the toilet, HR is radical, pee all of your water, need water to stand, can't keep body temp, can't shower, can't stand noise or smells, can't tolerate eating....yeah, I'll just take the risk of a low dose HC. I did have a supposed negative cotrosyn test from a Doc that said i was crazy. Found a second endo that did a 2nd work up and also confirmed I had normal endo testing. She's did find positive ANA and referred me to her friend who is rheumatologist. Appt is Dec 21. Zap, it looks like we are on the same path, or close to it. Good luck

I took 2.5mg twice a day. Only needed it for a few months then my BP seemed to adjust

Increase HR has been my main symptom and also the most annoying. 90 to 96 at times sitting; doing nothing. Usually just over 100 for daily activities. If I treadmill for 15 minutes it goes up to 130 which isn't terrible but it stays that way for about an hour before coming back down to my baseline. All my cardiac tests are clear. It's just an autonomic dysfunction for me. Good luck

Here's how I broke my cycle: I had high HR and low BP (80/40). Once I rec'd full cardiac work up which to me meant my heart was healthy but my system was whacking out I felt safe/comfortable starting some easy exercise. I started in sitting with no weights, then light weights. I always did heel raises thinking they were pushing blood back up towards my rapidly beating heart. I always used proper breathing techniques. I rested and would breath between ex's. I did basic activities: elbow curls, shoulder raises, tricep presses, knee extensions. Once I could stand a little I would do mini squats - only 8 reps then rest. I would do a light set in the late morning and sometimes again in the early evenings. Evenings I used to feel a little better. My heart rate was unhappy but my muscles thanked me and emotionally I felt like I had a plan. I didn't train on the terrible days. I kept those days for light walks around the house. But I didn't want my body to "forget how to function" so I always tried to at least shower and get to the kitchen for a little bit on the bad days. Tried to sit at the kitchen table and hear noise, smell smells and exercise my senses on those bad days. Every day was a fresh start but trust me it always just seemed like I was waking up to the same nightmare....eventually I started to have some time in the day that I was functional. Breaking the cycle was the best thing I did for myself. I didn't tolerate florinef. I was a hydrocortisone user and finally tried some Midrodine which was a savior for me. I only needed it for a few weeks as my BP stabilized on it's own with the drug as a kick start and me resuming daily activities. This is my experience and it seemed to work for me. My heart rate was already tachy doing nothing; it wasn't getting better and it didn't seem to be killing me so I went for it (with medical clearance). My guess is some seated, no weighted Active Motion is not going to make things worse and it's a start. Good Luck.