Relax86

This is me to a T

Not at all for me. My Pots has waxed and waned since I became a member here during my worst and most significant flare (2011ish ??). I got Covid for the first time in August 2023, my Dad had a brain bleed, my Mom who has dementia stopped ambulating and I needed to have her and her home outfitted for a wheelchair, my dog was DX with cancer for the second time and subsequently passed away about 2 weeks ago. And despite all of this being a pretty terrible run of events my POTS hasn't raged, and my mental health has been what I think is appropriate through these stressors. This isn't a flex, but more of one persons response to multiple stressors NOT resulting in a POTS flare. I know that stress can provoke my symptoms but it doesn't always. And I fully predicted through all this to have a major crash. It's been emotionally a total mess. These days my POTS is provoked by heat, lack of sleep, and usually stress. I'm getting close to being considered fully in menopause and going through that has been a little rough but as I'm getting there I think my Pots is actually a bit better. Hopefully this helps some folks not worry that extreme stress might not always mean a POTS flare. Because before this series of bad events I would've never guessed I could get through it without flaring.

I feel like I tried every holistic and functional medicine method I could possibly tolerate. I had the best luck with meditation (calming my ANS) and also acupuncture which I think had the same effect as meditation. There were times that I thought this diet or that supplement was helping me make some headway but most of those things inevitably didn't prevent me from my next flare. Midodrine, easing back into my previous life (and I do mean easing with lots of trial and error), meditation and staying on top of my feelings helped me the most.

I also had trouble with bone broth and kept making my own and pushing myself to include it for some sort of elixir to my POTS and gut issues. I also have celiac disease. Histamine foods all have triggered me way more than gluten foods did. In fact, I never had typical celiac reactions to gluten. I finally went completely gluten free which overall wasn't very helpful. Due to continued stomach pain I was prescribed Pepcid for my chronic inactive gastritis and it helped reduce all my food sensitivities. My stomach pain ended up finally resolving once I gave up my favorite thing - Advil (I was taking 8+/day), my resting HR came down quite a bit after being gluten free but it took close to 8 months for that to happen. It was an unexpected benefit of finally committing to a gf diet. This was a long winded way of saying YES to bone broth always triggering a flare. Good luck MikeO

I took a peek at this study as well. I remember when I first became symptomatic, had severe POTS and now continue to be at a livable level of Dysautonomia but continuing to search for why this happened to me. I had all of the symptoms in this study, plus some. And as was pointed out by Momtogiuliana the study only had 23 people and no control group. It makes me wonder if those 23 were just on track for dysautonomia anyway. It's one of the most unlucky things that's happened to me in my life. And I'm 100% sure if I was hit with this following a new vaccine I would 100% believe it to be vaccine related. I am in no way meaning to dismiss someone's feelings or their journey on figuring out why this happened to them. I did get the Moderna 2 dose vaccine and 2 boosters despite being scared to death it would set me back but for me they didn't. I always love to see studies that might someday figure out why/how this happened to all of us, but I know there were plenty of folks in this forum who presented like all of the folks in the study without the vaccine. My journey is over 10 years old and I still can't figure it out. I just returned from a little trip to Atlanta (from NJ) and I'm in bed today. Travel is so hard on my body....still. I do consider myself 80-90% healed at times, but other times I have to take it wayyyyy down. Like today. I love having this group to come back to, to share stories and experiences. And hope everyday for a cure, treatment or miracle for all of us. Lots of luck to those struggling.

I'm in South Jersey, in Cumberland County. I had a cardiologist who was pretty fantastic. I also saw a POTS specialist who absolutely knew about POTS and did some POTS testing. He was quirky, but nice & knowledgable. Neither name is on the forum list - I'm unsure if they need to be vetted and didn't make it through the process or no one submitted them. You're welcome to message me if South Jersey is a location you would be willing to travel. When I was searching for a POTS Dr it took several tries for me to find the best fit. I think both of these Docs are worth a shot.

@angelloz, I think we joined around the same time in 2012. Since then I've tried to periodically post here that I was able to get better. I can't quote myself but I think sometimes I said I was 85% or 90% improved since my POTS started. One of the main reasons I try to stop by and post is to give people hope. I still battle the feeling of these symptoms and try to stay hopeful except...... recently I've been back on the struggle bus. I've had some return of my dizziness, stomach issues, extreme fatigue etc. I could go into more symptoms but it's just a mysterious collection of them that appeared for no reason (again). Here in NJ there's early spring weather, but also weird wind storms and storms affect me. There's less people masking and more people around me with things like stomach bugs and regular viruses. I'm vaccinated and boosted (moderna) and had no trouble with them. I usually react to everything as many of us in this forum can attest to. I don't believe I've ever had covid. I did a home test Saturday night b/c I was feeling so so off; luckily it was negative. So it's just me, and my perimenopausal self, and my POTS popping back in to say that these flares still happen. I don't always know why, but thankfully they seem to subside. I hope yours does soon also. POTS is pretty terrible, I wish we would all get better. Tracy

I'm someone who got close to full recovery of my POTS back in 2011, 12, 13. I was able to return to work, but it seemed like autonomic glitches continued to hum underneath. I was still pretty grateful to get "better". Around 2015 I was having some terrible stomach pain and I was annoyed b/c the POTS was better. I was diagnosed with Celiac, went gluten free without much change, then continued to live somewhat half hearted gluten free. I would've called myself gluten sensitive. The stomach pain flares would come and go and didn't seem to have anything to do with gluten. This past November I had a pretty bad pain flare, my pain is always under my left rib cage. I'm 51 so I had my colonoscopy, and endoscopy and a swallowed a pill camera and it was all negative except for celiac damage. Ive been strict gluten free since 12/1/19 without much change. A few weeks ago I started getting adrenaline surges, feeling light headed and such. My previous symptoms were fainting but I don't feel like that. This is sort of a new dysautonomia that is gut driven; or maybe the dysautonomia is driving the gut. It seems like our issues are a little parallel. Let's get through it! I haven't been on the message boards quite as much in the past few years. I try and pop on every once in a while and let people know I did improve and it is possible. I'll check back with this thread and see how you're doing. - Tracy

Recently I returned to needing Midodrine after being med free and feeling close to 85% better since my flare of 2011. Not sure why. I caught a cold, but not the flu. I traveled a lot since October and I'm completely over tired. Hang in to all looking for reasons for flares, clues to calm the insides down and a CURE!

At one point I also had elevated testosterone. Never figured it out. Good luck

Just wanted you all to know that it is possible to get better. I had dysautonomia probably most of my life following multiple orthopedic surgeries as a child. Had a few POTS flares off and on t/o adult life never knowing a name to the "crashes". Had a terrible time end of 2011-2012 (hope my timeline is correct) - was bedridden for weeks. Barely functioning for the remainder of 2012. I started to get better with movement (not too little, not too much - I know that's vague), midodrine, salt, diet changes, and meditation. I did have a few clues for my POTS. Low blood volume and autoimmunity. Guessing LBV over time caused autoimmunity. In 2013 I had a uterine ablasion and continued to improve. By 2014 and up to today I feel about 90% better, sometimes 95%. I never feel like the old me, but I work, and work out and have a relatively normal life. I can feel my body sliding sometimes and know my triggers - the usual suspects: stress, poor diet, over exertion, lack of sleep, pending storms, humidity. But I know when I was combing this forum ever day looking for some possibility that I would get well occasionally someoone would come back and post that they did; and that really helped. Believing it can happen is important and also being realistic of expectations too. When I was bedridden I felt like if I could just get close to where I am now I would be grateful - and I made it. So I try not to get too ticked off with my remaining 5-10% deficit. Or the fact that I do have certain limitations and things I just won't do to avoid the significan return of POTS. Anyway, hang in there all. Best wishes for recovery

I do. This was the drug that got me on my feet. I use as needed today (which is 3 years post flare) and about 85-95% better

I improved significantly. It can happen. Most days I feel about 90-95% better. Occasional slides/flares that I can manage. Seems like my body has intense environmental sensitivity to food, temp, smells, light, endurance, - you name it and it can flare me. I've adapted some things, avoid some things but also challenge some things to desensitize myself. I've had to learn to listen to my body. For me - perfumes are a complete no; but exercise in a tolerable form is an absolute. Good luck!! Stay positive

I had a lab test for the low blood volume issue. Honestly, I can't remember what it was...I was so sick at the time. It was around the time that I was having adrenal testing, aldosterone, renin etc..... The Doc I had hated me. He just thought I was nuts. Said all my adrenal tests were negative except that I had a little blood volume problem. Once I completed my lab stuff with him, I took my results and ran. I bought meditation CD's which helped me greatly in terms of emotional health. Deepak Chopra did a series with Oprah called "Perfect Health" - the best $40 I spent in 2013. I was so tired of co-pays. Good luck to you - the positive thoughts and slow meditative breathing helped me sort of re-set my system a little. When I flare I have a method to go back to - helps me get thru.

I have a love/hate relationship with cardio training. I have a dislocated hip and I'm an amputee so running is challenging - If I do a ton of treadmill then I either have a short period of feeling really good followed by a crash or I just crash. I actually did way better with weight training over time - a span of 8 months or so until I felt consistently better in 2012. I also used other things such as hydrocortisone, some midodrine and seems like a big help was having a uterine ablation which significantly helped my anemia and suspected blood volume issue. My reason for POTs was suspected to be autoimmune (I am still not fully diagnosed) and potentially endocrine (also not diagnosed) but both with some low level positive testing. While my reason for POTs which I think was blood volume issues (confirmed) has been corrected and/or greatly improved my body still behaves like a dysautonomia case just not terribly tachy anymore. I still flare with other symptoms but they are more manageable as compared to elevated HR issues which I was not tolerant of at all. Maybe try some weight training?? Good luck to you POTLUCK. I've been watching you for a while and always admired your running miles.

Some drinking helped me when I was more routinely symptomatic. It seemed to calm my ANS quite a bit. I realized that with dysaut symptoms I was drunk - quick. So pacing myself was/is key. Hydration too, I usually start with half a coconut water, drink 1:1 water to alcohol and finish the coconut water before bed. So if I want to include some drinking - this is how I do it. As with POTs there's always a management to it and sometimes a catch. Cheers!

LooneyMom ~ You're a warrior. Kids shouldn't be able to have dysautonomias. I admire your fight for him and my heart reaches out to both of you every time you post. I am fairly recovered from a pretty terrible flare in Dec2011/Jan2012. New things creep up here and there however I function most days. There was a time that I was so sick and confused that a day like today was all I hoped for. I hope your son makes a full, 100% recovery and never looks back. xo

3 hard boiled egg whites with sea salt and a cup of coffee. about an hour later I eat a 100 calorie pack of sea salted almonds

I'm still better -- usually around 90-95%. I typically can figure a reason for symptoms to creep back up - not enough water, sleep, storm systems, menstrual cycle, over exercising. I can usually correct with Midrodine and or hydrocortisone although I haven't used either since March of this year. I've actually had some significant stressors that didn't seem to set me back but I've been very mindful during those times to take care of myself. Stay positive all!!!

Me. works fine for me. I only use it as needed.

I was diagnosed low blood volume, retest showed low end of normal. I have anemia. I was also told my RBC's die a little early (???) but I can't remember how or why that was suggested or tested. I had an endometrial ablation (I was significantly improved at that point but still easily suffering flares) and since have made even more recovery. I do believe low blood volume was/is the reason for my POTs but why I have low blood volume - I have no idea. I was 22 years old when I started being rejected to give blood, I was 25 when I was diagnosed with low blood pressure. Always prone to POTs-like flares but never like the 2009 flare and the 2012 which was the flare that brought me down. Hoping the ablation helps to always keep symptoms at bay. During the bedridden month it seemed like my body was unable to manage fluids. My body seemed to forget how to manage the system....I always felt like I had a bladder infection. I insisted I did - test was negative. The pressure and urge to urinate would be worse at night when I would try to sleep. Good luck to you Andy

Happy for your son and for you. Seems like you guys have had a rough run. I only sporadically check the forum these days but I'm glad I saw something positive for your young man. Fingers crossed....good luck

I took hydrocortisone through out my worst flare and got better. I don't think I would have made recovery without it.

I was negative. But I did read a ton of info about Adrenal Fatigue in which those symptoms overlapped a little with mine. I did use low dose hydrocortisone thru my worst flare and it seemed to help. I still dose it on occasions during flares. I'm about 95% better but the heart of my flare lasted a good year. There's significant reason to be cautious when learning about Adrenal Fatigue and use of cortisone -- also most Endo's completely hate the idea and believe it's a made up internet disease. But most docs's believe POTS is a made up disease for people full of anxiety so it's like picking your battles. Maybe do a little reading and see if some of the info fits you or helps you.

I'm with Katybug on the meditation train. It helps a lot. I also bought a book called Overcoming Adrenal Fatigue by Kathryn R Simpson which made a lot of sense to me. I felt for me that it was concomitant with my POTs/Dysaut. It talked a lot about the startle issue, adrenaline etc.... The medical community has not come around to the thought of Adrenal Fatigue and in bringing it up to a doctor early in my search for answers I was told I was nuts and it's dangerous to believe in AF. I thought the book was helpful and easy to read. Meditation has helped as well. Good luck