For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

The Grinch Syndrome

Dr. Levine's Exercise Study for POTS now published in the JACC.

The paper entitled "Cardiac Origins of the Postural Orthostatic Tachycardia Syndrome" coins a new descriptive term for POTS; The Grinch Syndrome.

(Dr. Levine has sent me a copy of the publication for this blog. Email me if you would like a copy.)

Dr. Levine's paper talks about how patients diagnosed with POTS or OI can have hearts that are too small.
"Results from our laboratory have shown that there is a sex-specific difference in cardiac size and mass even in healthy humans and that women have a smaller (and therefore, less distensible) heart compared with men (2,54). It is possible that such a sex difference is exaggerated in POTS patients. This notion is supported by a recent study of Miwa and Fujita (8) showing that a considerable number of chronic fatigue syndrome patients had a small heart, as assessed by roentgenography and echocardiography. POTS is a frequent finding in patients with chronic fatigue syndrome (55). It is highly likely that the small heart contributes to the development of POTS and probably should be included in the genesis of this syndrome."
So what does that mean to the average POTS or OI sufferer?  Exercise designed to improve the performance of the heart muscle could be THE MOST IMPORTANT FACTOR contributing to a patient's recovery.

Start Exercising in a Recumbent Position
In this study, patients started with recumbent exercises such as rowing and the recumbent bike.  They then gradually moved to performing exercises in an upright posture.  They also combined their cardio training with weight lifting in order to progress the patient's conditioning levels.

Significant Findings from the Study

"1) cardiac size and mass and blood volume were much smaller in POTS patients compared with healthy sedentary controls; 2) HR was greater, whereas stroke volume was smaller, in patients than in controls during upright posture; 3) the function of the autonomic nervous system was intact in POTS patients; and 4) exercise training increased cardiac size and mass, expanded blood volume, and thus improved or even cured POTS syndrome. These results suggest that POTS per se is indeed a consequence of deconditioning (i.e., cardiac atrophy and hypovolemia) and that carefully prescribed exercise training can be used as a nondrug treatment for patients with POTS."
If you have POTS then start NOW!
Ten out of the nineteen patients in the study no longer met the criteria for POTS after finishing the three month program.  They were effectively cured.  If you had any doubts or worries about starting to exercise while sick with POTS then dismiss them, talk to your doctor and get on the rowing machine.

Thank you for helping me feel better
Contributors to the study report are: Qi Fu, MD, PhD, Tiffany B. VanGundy, MS, M. Melyn Galbreath, PhD, Shigeki Shibata, MD, PhD, Manish Jain, MD*,,Jeffrey L. Hastings, MD, Paul S. Bhella, MD, and Benjamin D. Levine, MD

37 comments:

  1. Honestly I'm sort of disappointed with the study. First I thought it was going to be a very large study with like thousands of participants. It's only 19 people. Also a 9 BPM decrease in standing heart rates is nothing especially for those of us who have a 70+ BPM increase upon standing. I can't read the full text unfortunately to see more info about it.

    I'm happy for those who are doing better or essentially "cured", but I don't think this sheds much light for POTS as a whole. It's obviously good for that little subsection who has a small heart and low blood volume.

    I wish my POTS was that simple, so essentially I am jealous.

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    1. This is a very reasonable comment. :)

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  2. I'm a big proponent of exercise, though it has not come close to curing me. However, the study size is entirely too small to be ground breaking.

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  3. I think the points you both make are good ones. The next phase of the study which is ongoing has over 300 patients involved I believe. That said, I experienced a dramatic improvement in my quality of life after doing the protocol and I know at least 4 others who have as well so that makes 24 ;-)

    As for medications, I have yet to find definitive studies on medications used to treat POTS which prove a significant relief of symptoms. This study at least sheds some light and hope. Perhaps not a cure but an effective management technique.

    My thoughts are that it is worth a go PARTICULARLY IF YOU HAVEN'T TRIED IT. After all it is the improvement in our quality of life that we're after right?

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  4. The problem with medications in POTS is if your doctor never figures out your "type" of POTS, then you could be taking a medicine that are is in fact contraindicated. One that comes to mind is if a person with hyperadrenergic POTS took midodrine or a SSNI...The results of that would be very very bad. Therefore, if a study were to be done for effectiveness of medications, they'd have to study the specific types of POTS and then go from there. Hopefully that makes sense.

    I agree that exercise is good. Just be sure not to overdo it too. If it's taking days to recover from any exercise, then you need to stop and do find something else that works better.

    I've been on antibiotics for a UTI and I'm feeling better. I have no idea what that means...lol

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  5. I think the deal with exercise is that you start gradually and in a recumbent position. If you don't do that then the exercise can trigger "exercise intolerance".

    I know when I started the protocol I was exhausted! But I stuck with it and reaped the rewards so to speak.

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  6. There have been positive studies on low dose propanolol, midodrine, florinef, and octreotide. That being said... many patients respond very badly to drugs for POTS as birdlady noted. I was bedridden without florinef and ddavp, probably due to a delay in diagnosis and bed rest post misdiagnosis. My POTS was quite severe when I was finally diagnosed, so I also wonder if the study drew from participants with milder POTS that were not in need of medications.

    I do have the grinch heart and low blood volume, so I am going to keep on plugging with the exercise. In my defense, I was not deconditioned in the least when POTS first hit. I was extremely athletic, almost never missing a day of exercise. I think having a genetically smaller heart is a better description than deconditioned heart. Deconditioned stirs up emotions by assuming laziness or lack of activity.

    I too agree that exercise only helps!

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  7. Its a hard one from that little snippet. I will say having been a researcher pre getting sick that lots of groups put out preliminary studies with minimal patient numbers just to get the idea out.

    Having said that I think that only roughly 50% were 'cured' isn't the huge numbers you are looking for to support their claims. Plus 'cured' would need longitudinal data eg what's the rate of recurrence 5 yrs post program. Deconditioning in the medical and lay world has different connotations which they need to specify. Particularly as many including myself, were very active prior to becoming ill.

    In such a small sample size they would be unable to provide any meaningful information on subsets of POTS/dys. Without looking at subsets and inclusion criteria,screening etc it's hard to appreciate how useful the information will be. I look forward to the bigger study. Hopefully it will answer more of the questions.

    Exercise is vitally important to any dys patients to improve quality of life (though as someone else said not if you overdo it) and should always be included in all treatment plans. I will say without Florinef I would be bedbound and without metoprolol I wouldn't be able to hold a knife for shaking, so for me they work.

    Really they need to be looking at better identifying subsets of POTS/dys and then tailoring treatments plans to each, be that exercise, meds, lifestyle or a combo of sorts. Whatever they do the nature of research is that it's likely to be another 5 yrs before those studies come out. Research takes a long frustrating time especially if you want to do it right.

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  8. Wow... While I haven't read the entire study, I am wondering how to even approach such a study. First of all, it's bothersome that the study finds that "the function of the autonomic nervous system was intact in patients with POTS." Numerous studies have shown that POTS is a form of the limited autonomic neuropathy, so my guess is that the subjects in the study either were not assessed adequately for the function of their autonomic system or simply had a form of POTS where all autonomic testing, except the tilt table test, was normal. As others have commented, the sample size leaves much to be desired.

    Another "loaded gun" statement is "these results suggest that POTS per se is indeed a consequence of deconditioning". As a researcher, I would not use that statement based on the study sample and results. One would need much stronger evidence and better studies to even raise that possibility.

    Finally, Dr. Levine does not explain how numerous patients with excellent cardiac fitness developed POTS in a matter of days after a viral illness, pregnancy or minor injury. Also unexplained is how POTS can have a recurring and remitting course in one individual. Do these people just become deconditioned and reconditioned spontaneously?

    In all, a good preliminary study demonstrating the benefits of exercise in a small subset of patients with POTS, but unfortunately, the study makes many premature conclusions while lacking the power and results to support these.

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  9. I did not see where Dr. Levine noted that the small heart was from physical decondditioning in the abstract. I thought he was attributing the small heart to a genetic predisposition. In fact, I know his team is aware that many patients that acquire POTS are in excellent physical condition. He also states that the cause of POTS is unknown thought his team found autonomic function intact. Of course, I am disappointed the study is so small, but the take home I message I got was that exercise helps and can sometimes reverse the condition.

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  10. Thanks for emailing me the PDF. I read through the whole study and I actually give him and the team more credit. The abstract does not do this study justice. They tested both POTS and controls for autonomic dysfunction with the cold pressor test, valsalva testing and another test called MSNA. None of the patients in this study failed these and the results were similar to those in the control group. These POTS patients in his study indeed DO NOT have dysautonomia. So if you've had these tests done and you failed, then I don't think you fall into this group.

    However, I still believe that his exercise regimen can only help. In the study it says that patients started out using a recumbent bike, rowing machine or swimming 2-4 times a week for 30-45 minutes and then slowly ramped up the exercises over time. Only at the end were they encouraged to jog, ride an upright bike or walk on a treadmill. During the entire study they were to increase their fluid intake, salt and to raise the head of their beds. I think we've all been told to do this though.

    There were a few severe POTS patients in the study. The highest standing HR was 165. The highest supine to standing HR increase was 60BPM. Figure 3 sort of confuses me a bit because it looks like someone was still hitting 150 after the exercise program. Obviously that person had little or no effect to his program.

    Those that dropped out of the study were either injured outside of the study (broke their leg or ankle), were too busy with work to keep up with the exercise or were diagnosed with something else during the study (seizures).

    All and all I think this shows that POTS doctors need to start testing us rather than just shove pills in our face. Have any of you had an MRI of your heart? I haven't! That's how he came to the conclusions that they had small hearts. I have no idea if an echocardiogram would show the same thing.

    So that's my overall impression now that I've actually read the study. I think it's a bit rude though to make fun of us by saying it's the Grinch syndrome. He really could have left that out. This isn't a laughing matter Dr. Levine. We are essentially debilitated with this illness.

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  11. I am still all for exercise as part of any treatment plan, but having read the whole article I think Dr Levine is making huge leaps from such a small and very specific sample, and a less than rigorous scientific method. His claims of 'cure' are presumptive and can only really be verified long term, although I will say I'm really happy for those who felt better as that's always a good thing (not that he presents the data). He gives little time to those who did not improve (9 no improvement vs 10 improvement) and represent a substantial ans statistically significant portion of the study sample. I wont go through every part as I'm too tired but his interpretation of the data are far from unbiased although fall in that technically not untrue, grey zone. Hopefully the bigger study will use more judicious language and interpretation.

    I agree with the Birdlady that the term 'Grinch' is inappropriate and does not reflect a sensitivity to patients who are dealing with a difficult illness. Whilst that may be humorous in the research setting (been there professionally and know your humour can be warped) there is a difference when you are talking about clinical populations, where respect and dignity should be paramount.

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  12. My Son is thinking of starting the programme. He did not fail any of the above test apart from the increase in pulse rate. Can anyone say that recovered how bad they were when they started. He is in a really bad place and has no energy and is in in severe pain head nerve the usual concoction. Also very fit prior to this starting. Any views would be welcome.

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  13. I stand corrected. I finally read the entire study, and Dr. Levine does state that the small heart is from physical deconditioning. Unfortunately, I am well past the exercise goals of the final month of training. Shucks. Hope his protocol helps other patients.

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  14. Hi Leah
    Weren't you working with another doctor on your exercise program? What are the differences with that doctor and Dr. Levine's approach? Are you still on meds for the HyperAdrenergic POTS? You mentioned back in April that when you started the exercises with this other doctor you were nauseated and shaky but got steadily stronger. Are you still making progress or have you plateaued?

    Dr. Levine has only been taking people on the study who are off meds I believe so its interesting to hear how you are doing with exercising on the meds...THANKS Leah!!

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  15. Hi POTS Recovery,

    I'm on Florinef and a tiny dose of DDAVP due to low aldosterone and partial DI. I was a frail, ghost of a woman before these meds due to low renin, unmeasurable aldosterone and ADH. I had very low fluid volume, despite practically pouring salt down my throat. I tried clonidine for hyperadrenergic symptoms, but it made me feel worse.

    I was working with another POTS specialist on my exercise regimen, which I started in December. We recently talked to Tiffany, and she agreed that I have well surpassed Dr. Levine's protocol. My routine and heart rate mirrors his recommendations. I have been using the same rower, which I find a piece of cake (Level 10, 45 minutes). I can't get my heart rate up to the recommended range unless I use a cross trainer, stairmaster, or jog quickly. Dr. Levine recommended that I add weights a couple months ago. I love the toning.

    I am happy to be exercising, but I have plateaued. I feel like I do when I first got POTS. I got much worse after a misdiagnosis of a CSF leak and now I have gotten back to where I was in the beginning. I actually felt better a couple months ago when the weather was cooler.

    There is no reason the Florinef and DDAVP would be preventing my heart muscle from strengthening and expanding, so I don't believe the medications are preventing my recovery. If anything, they helped me regain the fluid volume to start an exercise regimen.

    I am still optimistic that I will regain functionality in the future, but I haven't found the cause or proper treatment yet. I am always hopeful, and I encourage others to pursue exercise. I certainly did, and I am not sorry.

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  16. I forgot to add that I am on the waiting list to see Dr. Levine. My husband has spoken to him on the phone, and we have corresponded with his team. My POTS doctor is very supportive of different perspectives and is still working with me. I am very open minded regarding all available suggestions and treatment options. You never know when you try that one thing that makes a big difference.

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  17. There's no doubt that exercise can help temper POTS symptoms, or in some cases get rid of them. But, according to my specialist (who I won't name but who all of you have heard of) the study is seriously flawed. Levine restricted the participants in such a way as to only take the types of patients who might be cured by his routine. Calling POTS per se deconditioning flies in the face of the experience of many of us, who fell suddenly ill while in excellent physical shape (professional athletes, dedicated runners, etc.) When I first got sick, I was running 4 to 5 miles a day, but still felt like I was about to pass out all the time, with my heart racing. That was not deconditioning. I'm concerned that this study will just result in a label that confirms doctors' worst uninformed stereotypes of POTS patients: that we're just couch potatoes and lazy, not sick. There is nothing I would like more than to go for a good run right now, but doing so would land me in bed for a good six months. (Trust me, I've tried the "push through" phenomenon). If POTS were pure deconditioning, then you wouldn't need gradual reconditioning -- you could just go to boot camp, or conditioning like I used to back, pre-POTS, when I played competitive sports. I wish Levine could have published his results, within a certain population, without stigmatizing us all in the process.

    All that said, I've improved immensely over 4 years, thanks to careful limit-setting, hope, medication, and mild physical exercise, increasing over time, to help venous return. My specialist believes that I will get well. So my criticisms aren't about POTS-fatalism, but rather concern about the need for a genuine understanding of this disorder.

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  18. well, it's official, I am NOT deconditioned, but I still have severe POTS. I completed a cardiometabolic stress test today and blew through it to the amazement of all. In fact, I was told that I am in better shape than 99 percent of the population. My Respiratory quotient, a measure of CO2 to O2 was high at rest. It was so high that they were surprised that I was not passed out on the floor. once I started to exercise the RQ actually dropped. I get more oxygen to my brain while exercising than at rest. I don't think I have a grinch heart if I can outpace 99 percent of the population. Another mechanism is involved in my particular case.

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  19. Ive been swimming, supine, in cool water, no sweating, you'd think the best form of exercise for someone with OI there could be... and it has helped my physical strength, but then I have periods of exhaustion where I can't get out of bed from fatigue... I do not believe POTS is "cured" by physical exercise. Maybe some people who were physically deconditioned and did not really have POTS were in the study, and were "cured" because all they were was deconditioned! If you really have POTS, and I have the hyperadrenergic type, you know that this is true, and it's actually pretty discouraging to hear that there are MDs out there telling patients that if they exercised properly they wouldn't have POTS anymore. NOT TRUE.

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  20. I wonder if youre on to something Stacy?!
    How have you been doing Elisabeth?

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  21. I was diagnosed with POTS about 10 months ago and also migraine dizziness, all of which came about following a bad ear infection. I read the entire article and came away feeling hopeful that exercise would help me. My cardiologist is one of the staunch anti-exercise camp. In fact her nurse told me NOT to exercise at all! She said I should lie on my back and gently move my legs. I really almost started crying-- I said, "But... I used to take classes, I used to work out..." Indeed, I was in decent shape when this hit, working out several times per week with a trainer. I find it very hard to accept that it's all deconditioning! And I too find the name Grinch Syndrome to be lacking. I do not hate Christmas-- I'm just dizzy all the time! However, I do want to try the exercise plan. I wish he had gone into a little more detail that the one paragraph about the specifics in the article. If anyone has put together a week-by-week thing that I could follow, let me know.

    My blog: http://catherine.blog-city.com

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  22. I think that 6 exercise session per week is too much.

    I mean, athletes exercise 6 times a week and I know people who are very fit and lean and they just exercise 2 times per week.

    There must be some difference between a wannabe athlete and someone who just exercises to be fit and even more someone who has serious health problems and suffer from post-exertional-malaise.

    Exercizing 6 times a week is really overdoing it and more suitable for an athlete.

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  23. I just wanted to make a late comment on the small heart theory. I have comfirmed hyper-pots and I know I have a normal sized healthy heart. I had heart surgery related to a suspect PFO and the dr said my heart looked perfectly normal in size and healthy. This surgery was 6 years ago and I had hyper-pots symptoms (though milder then today) for at least 5 years prior to the surgery.

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  24. does anyone here have pots because of arnold chiari malformation? Does anyone have peripheral neuropathy? I have both, I was very fit and had symptoms of pots before my brain surgery for the chiari. After the surgery I felt better and the pots symptoms lessened and I walked 5 miles a day, went to curves(an exercise gym)and worked 12 hours/day except Sundays. Then I had a viral illness and developed pots again and this time I also developed small fiber peripheral neuropathy. I agree with most of the posters here that it is not fair to classify those of us pots as "deconditioned". POTS is a syndrome (response by the autonomatic nervous symptom) that develops because of a stimulus and there appears to be numerous stimuli that triggers it.

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    1. I was diagnosed with Chiari Malformation and referred to a POTS specialist. So I have both but I am being treated for POTS currently with .02 mg Florinef, a beta blocker, and Ritalin for severe brain fog.

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  25. I was part of this study, I have no idea if they consider me one of the "cured" patients are not. They said they would follow up with me after the study and I never heard from them again so I am clueless. I still have pots and am taking a beta blocker to control my heart rate. I dont think deconditioning has a lot to do with it. Maybe for some but not all. They do need to study a larger group.

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  26. I was running 5 miles a day before getting whiplash and immediately developing POTS. My heart is normal size and I find "The Grinch Syndrome" to be offensive. After a 4 month fight with this and medications/increased salt/compression stalkings/increased fluid intake it was finally under control. I had two years of relative health and working full time, then recently had a bad UTI and am having a POTS relapse. In my case, I think that being strong and fit helps POTS, but that is only one aspect of treatment. A pilote study such as this should be very careful not to generalize its results to the entire POTS population.

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  27. The label "Grinch syndrome" is not going to stick. It, in fact, is offensive and considering the insensitivity involved in minimalizing such a dibilitating condition, it only demonstrates who the real grinch is.

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  28. I happened upon this blog because my mother in law had been doing a lot of work with P.O.T.S and I was looking it up to see exactly what this disease is. My MIL is Mary Kyprianou and she has an office out of Dallas, TX. She does biofeedback and has helped so many people with P.O.T.S. I was reading some of the posts and saw that a lot of people do not like conventional medicine. You should look into biofeedback. Her website is http://biofeedbackusa.com I hope this helps!

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  29. Ok, I'm a new diagnosed patient of POTS, and I know nothing other than what I can find on the web about this disorder. I'm looking at the posts and people are posting "types" of POTS how did you get diagnosed with a type? ( hyperadrenegeric) my doc told me to take my pill, drink water, and add salt to everything. i'm frustrated. :/

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  30. This study is hardly conclusive of anything at all. 19 patients cannot possibly represent the whole POTS population. Additionally, the methods that are being used to continue this study are not scientific. Patietns are NOT being directly monitored, but are reporting their own success/failure with the program. They never even have to MEET Dr. Lavine. I suspect that the original study may have been "fudged" a bit, and cannot be reproduced. I am aware of many POTS patients (myself included) who have normal sized hearts. Actually, POTS can in and of itself lead to cardiomegaly (and enlarged heart) from the continuous tachycardia. Exercise in such an individual would be contraindicated and actually detrimental.

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  31. great POTS awareness blog potsbecomeaware.blogspot.com !

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  32. Just a quick update. No more POTS. I finally pulled out of it and am back to the land of the living and feeling great. I exercise daily. It took a good 18 months of hard exercise to fully recover and get off the POTS meds. I had this lemon of a condition for 3.5 years. I was not deconditioned when I got POTS, so it's a mystery, but the exercise was the only thing that worked for me. Good luck to all! I'll be out LIVING!!!

    Leah

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  34. POTS isn't something that is only caused by environmental triggers like an illness or an accident. I have Ehlers Danlos syndrome, characterized by hypermobile joints and weak connective tissue. I know what causes my POTS and I've had it my whole life. I didn't know what it was until recently (I was only diagnosed with EDS last year) and I've always been active as the POTS will flare up and then lessen allowing me varying activity levels-- but it never goes away. My conditioning has nothing to do with how severe my POTS is.

    I'm lucky in that it isn't too bad, but the tachycardia has been acting up. I do find that increased fluids, salt and sleeping with my head elevated does help. Alcohol and carb-heavy foods send me into a tailspin. I worry about my POTS because I know I'll never be cured and it can absolutely affect my day-to-day living. This study seems to me to not take the condition seriously or take into account how it doesn't affect everyone the exact same way.

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    1. I have also been diagnosed with EDS as well as POTS and now MCAS. What that means for me is that I MUST continue to support my cardiovascular system through regular workouts or my POTS symptoms come back with a roar.

      Efforts to improve blood volume also help ameliorate the worst of the blood pressure fluctuations such as Lotsa Salt and raising the head of the bed.

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