Relax86

I had nuclear stress test - neg. I wore holter monitor - neg. I had an echo - neg. I think lots of our symptoms mimic cardiac reasoning so closely. But part of my healing was being able to put the cardiac worry behind me. My cardiologist was a great guy and I trusted him. Getting the right tests by the right Doc was part of my healing and recovery that I've made up to this point. Good luck

I literally ate salt from Jan to July trying to elevate my BP...plus I'm afraid of meds. Had been prescribed midrodine but was scared to try it. Finally sometime around mid summer I gave it a try and it did help. I was able to d/c midrodine after a period of time and my BP seemed to stabilize. One of the reasons I gave up salt and water alone is because I read someplace on the forum that without something to help you hold the salt and water then it's just running thru and or stressing your system (???). For me the midrodine was about finding the right drug for the right period of time. Funny thing is now I'm on the autoimmune road. Wondering what came first the chicken or the egg.

I recently have found dinner to give me the most difficult time. Most of the time I eat the same foods so the only difference in my meal is the time of day. I recently had salad with additives that I wouldn't have chosen and salad dressing that I wouldn't have picked and had a 5 day flare. But generally dinner makes symptoms flare. The only meal which is followed by being sedentary.

I bought C0-Q10 at some point last year and never tried. I still stare at it wondering 'why not'....I just can't seem to find enough people who said this supplement made a significant difference. And in the spirit of not putting vitamins in my system I may not need, I've held off.

I have days where I amaze myself in exercise and very little rebound issues. Other days where I cut my weights back to just 4# dumbbells and I feel like I can't finish a set. I can't seem to correlate a thing to symptoms, food, fatigue, mental status/stress or menstrual cycle. It's just this mean little game. Furthermore there are some days where I exercise with weights and reps that should give me muscle soreness and it never comes. Other days I have a short, light workout and I'm sore for days. My form is always good. There's a chemistry disconnect with my tissue. Like I said before - I rarely push my treadmill. I'm an amputee with a hip disartic ( which I don't think I even mentioned before here on the forum ) but I limit my impact cardio so I can energy conserve orthopedically for my job in outpatient physical therapy. I completely understand the switch. I used that phrase to describe my symptoms to my husband in my flare of 2009. The 2012 switch seems a little more like a dimmer - never quite turning off.

I love the Rama hypothesis...I'm pretty convinced I'm at number 5. Which model ~ I'm not sure and not liking the end result of either one...haha. Just looking for the fix. I feel like a DJ that wants to scratch across the record and start the song again from the beginning. I didn't start out a poor eater but I easily can see what my trigger was to my flares. I can control that moving forward, or so I think. But how to find homeostasis again is the question. Can I reverse what my body has been through, can i get myself back online? Or will I ever find a way to keep symptoms baseline. I have to say this journey keeps changing. The forum here is what keeps me chasing the curve certainly not ahead of it. Recent visit to rheumatology finds C3 deficit and positive ANA for scleroderma. Not convinced I'm scleroderma but probably autoimmune. We all have heightened sense of how our bodies feel b/c we are forced to listen to our symptoms to decide what we can accomplish each day. But at this point I'm just at a loss for a direction. Recently had a 5 day flare of symptoms (which included a migraine - new symptom for me) after a new food. I can't decide if I should attempt a Paleo diet, a gluten free diet, test for protozoa, do a 23&me kit, live off of hydrocortisone or just run down the road until my body explodes. The plan for today is to meditate, try and watch my daughter play soccer and just enjoy the last day of the weekend.

I believe emphatically that I was a POTs candidate from being significantly anemic followed by an autoimmune flare/dysautonomia (still trying to decide) followed by a 4 day hospital stay with a ridiculous amount of bloodwork. Followed by discharge; feeling worse and continued lab testing - weekly - wildly looking for answers. I didn't start to get better until I stopped the blood work; a decision I made after having a test that showed low blood volume. I don't think my body rebuilds/replenishes blood quickly. I currently do not have low hemoglobin or hematocrit but I'm always on the lowest end of normal and that's with 2 iron pills/day, beets daily and liver every 2 weeks. I agree with Rama in that exercise does make you tolerate exercise better; but my body still flares when that's what it wants to do. Funny thing is that I call myself 85-90% improved, and I am better, but each day I can still list easily 5-10 symptoms that I've learned to live with. It's just nuts. This week I had a bad response to a (first time eaten) salad dressing - immediate fatigue, followed by adrenaline surges, followed by a 3 day migraine. That was not normal Tracy pre POTs, or autoimmune or dysautonomia or complement disorder or whatever this is.

Good to know as I have recently had the positive ANA and also complement testing that was not normal. So I'm going down the autoimmune road. Information moves slowly and I learn more from the forum - so thanks; I'm trying to be patient while the medical community attempts to figure me out a little. I apparently have low C3 which supposedly means I have a reduction in my immune system which is funny because besides POTs in the beginning of last year and subsequent dysautonomia I rarely get sick, cuts heal very quickly etc...I may never understand my body again.

I am one that responded well to dosing hydrocortisone. It's the only drug that helped to bring me along. Later added midrodine for a short period until BP stabilized. Then weaned off of HC as it makes medical Dr's nuts when you're on it and you have negative cortrosyn testing. I still miss how I felt on it. It was very helpful for me. I use a brand of vitamins called Pure Encapsulations and often browse their Adrenal support section.

Once medically cleared by the cardiologist I was supported to do what I felt was right. And it was suggested pushing (for my case) was fine and could only help. But yes, at times I would struggle after exercise for a day or more; usually resulting in overall decrease in symptoms.

My closest friends know and are supportive; 1 in particular did tell me she originally thought it was anxiety which is disappointing. I have an annoying family of which I was typically the rock...if I try and talk about MY symptoms then my family just wants to come over the top with theirs...that's my Mom and sister. My husband has been supportive but I suspect he thinks most is anxiety and I'm not out to proof anything to anyone. He also thinks I am 100% better now and doesn't understand why at this point I can't just put last year behind me and move on. I stopped communicating symptoms to him just because the poor guy had to listen to so much crap from Jan 2012 to July 2012...I still have symptoms but I just tolerate them better now. Also, I look really healthy despite feeling not like me anymore so it's just annoying to try and overcome the stigma of not looking sick. Reality is the maintenance it takes for me to stay outta POTs zone is just a daily grind. And not knowing when this thing might return and try and steal my life is my biggest barrier to happiness right now. If I'm walking into walls my hubby just takes over the task that I'm trying to complete, he always carries, and offers to drop my to the door. He's a good egg, he just doesn't get it. Sometimes I think to fully "get" dysautonomia you have to "have" dysautonomia and I wouldn't wish it on anyone

Driving was only a problem at the start of my flare...I was bedridden for a few weeks and I didn't do anything. I am a fainter but not when I'm seated. I only had pre-psyncope in sitting but sip water aggressively or pull over if I felt it while driving. Driving was a little bit of re-education for me. It pushed me to hear noise and see light, re-learn to not over grip the steering wheel and breathe. I have a 45 min commute to work and I think it helped with my re-train.

Happy for you Puppy ~ you were due...overdue actually. Nice to see you get a break!!!

And there you have it.

I started in sitting...I didn't start any cardio or walking before I could do some basic arm and leg PRE's (progressive resistive exercises). I started very light. I did 1 set of 10: bicep curls, shoulder raises, knee extension, heel raises in sitting, etc... I added treadmill way later to my routine. One reason is that my resting HR has always been outta control (should have been a POTS clue) and I had such a tough time keeping it down and keeping me comfortable. Usually after an exercise attempt I would have a bad day, followed by some distinct good days - real bright spots. My cardio today is only about 15 min on the treadmill but my weight training has bumped up to quite a decent program. I just like the way my blood pumps with toned muscles and I'm not sure why. There are some very intelligent people on this forum who could probably explain the chemistry.

I'm POTS but not MCAS. Actually in the height of my flare sex helped b/c it increased my BP. But I would often crash afterwards and feel terrible - not because of all the fun, but because of adrenaline...etc. Worry always makes POTs feel worse. I'm a breath holder during...try not to hold your breath. Here's another comment that might get pulled from the forum - but practice yourself. When I said I retrained everything, I meant everything. Driving, light singing, exposure to chatter, TV, light, perfumes/smells, exercise, food...and actually sex. I breath a little different now. And I feel comforted when lots of times POTs is scary. Sex isn't. So I had to retrain my brain to believe some of it. These are just a few things that helped me. Good luck. I've officially discussed having inappropriate lactation over the summer, I believe I've had a poop conversation, and now I've talked about sex both with my partner and with myself. It is what it is....:-)

Mornings are the worst. And when I was in the heart of my flare I just was so sad to go to bed and scared to wake up. Never knowing the crazy symptoms I would be faced with. Suggestions from this forum were to elevate the head of the bed - helped me a lot. I would salt and drink water before I got up. I sometimes would eat a little slice of cheese before bed to avoid blood sure issues (not sure if this really works but I read it on the forum someplace). I would pump my feet and slide my legs to get blood flowing before I got out of bed and I would move slowly. I definitely believe it's blood flow for me. People would think I was nuts if they knew but I swear I can feel the blood bubbling from my right carotid. Some nights I wake up around an hour after I went to bed and feel the bubbling, short of breath, elevated HR (100BPM)...for no good reason....just laying there. I think those nights correlate with some late night snacking...I need to pay better attention to the foods I eat or time of month.

I just don't like today's environmental issues....and I always wonder about the quality of my air, food, soil, water...etc as a trigger to more people becoming affected. Not to mention the rat race that mentally I just don't believe as a human race we were meant to withstand all the pressure we put on ourselves. {2 cents added}

When my BP was consistently low - waking up at 85/45 and never getting better than 102/60 (and symptomatic b/c I realize that's a normal BP for some) then Midrodine did help me significantly. I took 2.5mg at 8am and another dose at 2pm. I could feel it wearing off.

My Mother has had anxiety most of her life. She has had some POTs type symptoms but that's just my thought; that perhaps she has some dysautonomia that created the anxiety. However reality is when she just takes a little bit of xanax most of her symptoms disappear. I'm not a doctor so I really don't know which came first for her. She could be straight up anxiety - Lord knows I've spent my entire life being her crutch. My 14 year old has some symptoms that I'm watching - mostly eczema/allergy in nature. I'm not going to rush to make a wrong decision/diagnosis for her but she's on my radar....otherwise she is very healthy. I agree that thinking about a child living this life is haunting.

The second I lay down for bed I feel like I have to pee. If I pee and lay back down I still feel like I have to pee. Before one of my earlier POTS flares I demanded antibiotic for UTI (which I am not prone to, never get and subsequently tested neg). So I improperly treated myself. Mu 2012 and most recent POTS flare bladder symptoms have been a real pain. Now that I am 85-90% improved it's one of the symptoms that lingered. Only when I'm trying to sleep and even with an empty bladder. Who knows?!?!

I work in outpatient physical therapy job. I have 50 minute commute. The commute works for me. I turn on the radio and try to engage my senses. I'm up most of the day but can sit in my stool periodically b't pt's to document. Once the weekend comes I can't wait to veg a little. What I have experienced is that I feel actually a little worse on Sat/Sun by not getting myself moving by the morning. I like to take my time on the weekends - read newspaper, catch up on forum, facebook, call my Mom...etc. I also have a my hubby and daughters (18, and 14) who looooove to sleep in - which I hate. I have recently been getting up and out to do a few little errands that they don't want to do so I can get my blood moving (???). I don't have the daily grind of the job but I do have to keep active. It's weird how this thing keeps me guessing. But yes, the tricks we all learn.

I have recently had a positive ANA, false for scleraderma, negative for sjogrens, positive for low complement (C3 I think). In the beginning of this pots flare - jan 2012 I was prescribed hydrocortisone for a diagnosis of Adrenal fatigue and I responded very well to it. I went on and off HC a few times in the year as a few Doc's felt it was going to destroy my adrenals. I generally took about 10-15mg per day and it always helped. So my current rheumatologist says based on my current blood tests it's no wonder I felt better on the HC. She doesn't exactly know what's wrong but at least she's willing to test, look and not peg me for a nutcase. I may, however, turn her on to this thread.

I had a flare in 2009 which I felt really bad for 2 weeks, then felt crappy and unsure why for about 6-8 months. I found DINET but recovered and talked myself out of the POTS diagnosis. I had another flare in 2012 - had a 4 day hospital stay where I had way too many blood draws causing low blood volume and that flare had me bedridden for weeks, and sick after that for months. It's been a little over a year and I did recover. I don't think this flare would have been so bad without all the bad bloodwork and poor or no care to follow. It delayed my recovery. Nonetheless I re-found DINET, finally admitted to myself what was going on and also this time my family Doc diagnosed me very early but had not clue how to help me. My long winded point is that staying ahead of the worry might just be your best defense; you've already recovered before and can do it again. I found reading peoples posts and stories here empowering and educating. "Meeting" people here like me was comforting. And yes there are many who get better. Good luck

I think many of us here have symptoms that parallel MS. The one thing to think about is that there are very few POTs posters who actually do have MS or who post "guess what guys I don't have POTS it's been MS the whole time". My point being is that although MS is mysterious and tough to diagnose I think POTs is more difficult. My heat intolerance has changed over time from profuse sweating to lack of sweating, to becoming short of breath, tremors, nausea, and perceived unilateral weakness UE and LE. One of the reasons I say perceived is that I always feel like my R upper extremity is losing strength. It seems like my grip has worsened and I tremor more in that hand, my ear pain is right sided as well as my neck. I always have veins bulging out of that hand followed by tachy, and lightheadedness...but objective strength testing has not changed and my deviation between R and L has remained the same using dynamometer testing over the course of the year. I have some flares that make me certain that I have MS but realistically it just hasn't been proven true thru testing. Good luck and hang in with the tricky and every changing life of POTs