firewatcher

Surgery was yesterday: 2 bilateral inguinal hernias and one umbilical! Hopefully all fixed. Now I get to deal with post-surgical pain AND a POTS flare. I keep trying to hydrate, but my bladder is not happy with the trauma, so it isn't working like it should. Seriously, what is is with clueless nurses? They KNOW you have orthostatic issues and they still want you "up and around?" I threw up all over us both, but at least I didn't faint. "UP" is a very different thing for a POTS patient.

AND the not so good news... Because the pre-op nurse asked why I was taking so many antihistamines I told her about the possibility of MCAD and the positive response I've had to the treatment drugs. NOW, anesthesia won't put me out to perform the procedure. Three docs have said, nope not till you know for sure. C'mon! Seriously! I mention this stuff so they can prepare IN CASE and it negates me getting treated AT ALL?!?!?

One week till hernia repair surgery! I don't have a lot of choice anymore, I have a painful bulge and it is gurgling, and surgery is the only way to fix it. I had my pre-op hospital visit today and actually felt better when I came out of there. The nurses and anesthesiologists actually took me seriously! When I mentioned POTS, the nurse admitted she'd never heard of it, she looked it up and immediately contacted anesthesiology which HAD heard of it AND treated it before. The kicker is that I'm on MCAD treatment drugs...and I have a great deal of my life back......however, it makes surgery far more difficult because of the possibility of anaphylaxis. I've had a fantastic response to the drugs (vastly decreased headaches, decreased body pain AND my kidney function is now "normal") so it makes it likely that I would have MCAD....****....and hooray! I just don't have an official diagnosis, so here I go again. Wish me luck!

I have an appointment with a new POTS doctor in mid-October. Hopefully I will also be on the mend...after hernia surgery...sigh. Congratulations, though; a diagnosis is so often a vindication. YOU know what you are dealing with, but now that it has "a name" it can be treated seriously!

Just a note on "Anxiety" meds: they treat more than anxiety. I had a very good response to Clonazepam (Klonopin) for many years. These meds seem to blunt the overreaction of the central nervous system. The issue is really "the label." Many doctors see an anxiety med and will assume that you have anxiety, many nurses will do the same and all this gets in the way of proper diagnosis of the actual medical condition. But that does not mean it is an inappropriate treatment! just an inaccurate label. IF you trust your prescribing doctor, AND you have a good response to it, take it and be honest with your doctor about what it does for you. Full disclosure on my part, I no longer take Clonazepam, because I lost the GP I trusted and the new one got onto the "anxiety" bandwagon. It helped and many times I wish I still had it, but until I get a doctor I trust, I will deal with my symptoms...sigh

I am also from Georgia and was diagnosed with POTS 10 years ago at Vanderbilt. I saw Dr. Biaggioni and he was excellent; I have seen him several other times for follow up and he was still excellent. As for cardiologist in GA....let me know if you find one. This is not a good state to live in if you have "unusual" conditions regardless of the firmness of your diagnosis. Whether you go to Mayo or Vanderbilt, you will need some type of doctor for prescriptions and monitoring, not necessarily a cardiologist, any (MD)doctor who is willing to be your advocate will do as long as you trust one another.

Hi Syra, welcome to the forum. I honestly wish none of us were here and that we were all "better" and busy living our lives. May we all recover!

SammyJo, As awful as it is to hear, sometimes there is no "cause" and even if the "cause" is found it does not mean there is a treatment. Have you checked into Ehlers Danlos? https://www.ehlers-danlos.com/eds-types/ I seem to remember there were many tests for that, from flexibility scores to genetic testing, etc. Vanderbilt has a bunch of specialists; I saw cardiology, neurology and endocrinology when I was there, and I've been there 3 times. I still don't have a "cause." For many of us, we have to do our OWN research on this stuff. One of the few doctors I still trust told me once "no doctor is going to have the bandwidth to figure all this stuff out." There are simply too many variables and systems involved. I research on PubMed.gov which contains almost all the medical abstracts for papers published in the last century or so, they have a handy search function and often the articles are available for free online. Many rare diseases, like EDS have websites and support and education, often with lists of doctors who treat that condition.

SammyJo, have you contacted the team at Vanderbilt? As a patient (even research) you should be assigned to their patient portal. I have always gotten quick replies and help from them, though they do not "treat" POTS by prescriptions or regular follow up. I have only had good visits at Vandy and have not been to Mayo. As for Georgia...yeah, good luck with that. I live just South of Atlanta and can't find even a regular GP or Cardiologist to touch me. University of Alabama in Birmingham has a "Mitral Valve Prolapse Center" that supposedly also treats POTS, but I have not ever been there. Let me know if you find a doctor around us!

Sue1234, I keep getting tired of all the "healthcare is or isn't a right/ healthcare should be paid for" arguments. I have excellent insurance and can't find a doctor to treat me! The doctors at Vanderbilt and other "super-specialists" are fantastic and supportive, but don't treat day to day stuff. The further outside of specialties you go, like cardiology, internal medicine and family practice just don't touch people with diagnoses like us. As soon as they see it or you ask them a question, they tell you a specialist has to treat it....but its impacting the rest of me!!!! If they do take me into their practice, they won't do even minimal research and then look at me like a clever toddler if I ask a question. Health care treats the healthy, those that are sick with "incurable" or "difficult to treat" conditions are simply ignored. I have started taking the OTC MCAD meds plus a bunch of salt, and things have improved, but I have some specific POTS issues that I'd like to treat and no doc to help me. Perimenopause is a ***** and it is making life difficult. My OB-GYN wanted to do a hysterectomy, but I really don't want to deal with hospitals and recovery plus a whole bunch of "medical professionals" that are not going to understand when things go wonky!

sue1234, I've been disappointed in the medical community as well. The promising POTS research has seemed to stall and honestly "Healthcare" has been corrupted by turning doctors away from treating the sick into "preserving the healthy." Most doctors I've found won't treat a rare, chronic illness (no matter how motivated the patient) when they can "treat" 10 sore throats and ingrown toenails. As hospitals and "Health systems" gobble up independent doctors offices and push everyone into "a system," the patients in need of care are abandoned to go off and die quietly with no one to advocate for them.

I am also certain that hormones play a part. Oral contraceptives (without a break) helped my POTS, but caused a bunch of other issues. As for "finding a doctor that will listen..." I'm not sure that exists anymore. The more doctors I see, the less I trust any of them, even the supportive ones. Thanks for the welcome return. I'm sorry we are all here!

Hello everyone. 10 years ago, I was diagnosed with POTS (hyperadrenergic tendency type) at Vanderbilt University. My condition has waxed and waned and flared up during the years, but mostly improved. Two years ago, I was frustrated with my progress and did the Levine Exercise Protocol for POTS. It was difficult, but possible and I almost ditched my POTS diagnosis. I was excited at my progress, but my local doctors in Atlanta were not, and were very discouraging, so I stopped...and things got worse. I thought that if I ignored my issues (like they did) and did not bother to treat it, it would go away. It did not. I have also been hit with almost daily migraines, and now perimenopause issues, so I am trying to get back to where I was two years ago. Anyway, I did a very adolescent thing: I ignored my conditions. I denied my diagnosis. I was so tired of wearing this ****** diagnosis like some merit badge, that I pretended like it did not exist. It makes it difficult to find doctors who will treat me, because they've never heard of it and don't have time to familiarize themselves with it, other than a blurb on Medscape...they all stop at the word "benign." I still do not have a "treating" doctor for my POTS: the local cardiologists say that a neurologist needs to follow it, and the neurologists say it is treated by cardiology...forget family medicine. So in frustration, and seeking understanding, I am back.

I know you say Nashville is too far, but it has some of the best Autonomic Disorders Specialists in the world. https://ww2.mc.vanderbilt.edu/adc/ Dr. Italo Biaggioni was my doctor there and gave me a diagnosis of POTS. Many of the research articles published are from this facility. As hard as it may be, it is likely worth your time and your health.

Cornell University has studied CFS/ME patients and found blood and stool biomarkers that indicate an altered gut micro biome. Whether it is a cause or effect of CFS/ME is unknown, but it finally creates a hypothesis that firmly shows a connection between altered immunity and the CFS/ME state. "Our work demonstrates that the gut bacterial microbiome in chronic fatigue syndrome patients isn't normal, perhaps leading to gastrointestinal and inflammatory symptoms in victims of the disease," said Maureen Hanson, the Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics at Cornell and the paper's senior author. "Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin." http://www.news.cornell.edu/stories/2016/06/indicator-chronic-fatigue-syndrome-found-gut-bacteria

I stopped the herbal TCM (traditional Chinese medicine) but still practice some core dietary changes (no sweet foods, no raw foods, no cold foods, among others.

SarahA33, I agree with every single one of Dr. Blitshteyn's points from my own personal experience. Maintenance is also key: two weeks with significantly reduced activity will cause me a setback. BUT...it is a treatment IF you can stick to it. For me, it has fewer side effects than some medications I've tried. Still curious to read the full text of the article though.

There is a new POTS article out by Dr. Raj: Heart Rhythm. 2015 Dec 28. pii: S1547-5271(15)01674-4. doi: 10.1016/j.hrthm.2015.12.039. [Epub ahead of print] Row, Row, Row Your Way to Treating Postural Tachycardia Syndrome.Raj SR1. There is no abstract, so I am curious to see what the actual article says...

I was very happy to have a good experience as well. I had expected something far less pleasant, and was impressed by the amount of compassion. The only POTS meds I stopped were propranolol and the daytime dose of dDAVP. I am still off those. Is it a cure....? I'd call it more of a treatment. I have not checked my orthostatics in several months and do not feel the need to do so. I feel better than I did before. Currently that is enough.

When I asked this question of my cardiologist recently, he told me "it doesn't matter what your heart rate gets up to, only that it comes down into a 'normal' range with rest."My active HR can get well above what my "predicted max (200-age)" with exercise, but returns to my "normal" afterwards. I've also been worked up and worked over by numerous doctors, so they are pretty sure that i don't have "heart issues." Ask your/her doctor.

I was considered to have hyper-POTS. I had two healthy, term deliveries. Both were induced, but by different methods. The first was with pitocin without epidural, which sent my BP skyrocketing and made labor and delivery very fast (3 hours total.) The second induction was by "stripping my membranes,"plus an epidural. My labor progressed well until I got the epidural and my BP bottomed out, my son was born quite blue, but pinked up once delivered. Every person is different, but my BP was very sensitive to both pain and epidural. Good luck!

Weight training, in the exercise program that was suggested for me, was to do 2 sets of 10 reps. The weight should be great enough that the last 2 reps of the last set are difficult. Once they became easier, I was to increase the amount of weight lifted. In my prior experience, that meant "lifting heavy:" greater weight and less reps. The concentration of the exercises were on the bigger muscle groups (quads and hamstrings) and especially the calves. The goal was to strengthen the "muscle pump" through increased hypertrophy (size) of the muscle.

I reached a point where every medical treatment does not need the mechanism explained. Migraine is a good case in point: the researchers don't know why triptans help, but some do in some people. I'm not going to hold out on taking my migraine meds because they don't know how they work...they work for me...I take them. Placebo can be a powerful thing. If it is placebo, then placebo has made me more functional. I was simply trying to provide a positive experience and perhaps hope for anyone who wants to attempt the protocol. For years, I'd read comments from naysayers who had never attempted the program. I was outright fearful of the doctor himself from hearsay. All of these delayed my attempt, until frustration with my current doctors made me swing in this direction. I had a good experience with Dr. Levine and his staff. They were knowledgable, personable, friendly and supportive. My doctors at Vandy agree that there has been improvement and encourage me to continue.

"I think all they did was identify a group of people, possibly Firewatcher fits into that group, that will be successful with exercise." Actually, my ANS tests at Vanderbilt initially were NOT normal, nor were they when I was 3 months into the program, but they were getting better. However, at 6 months into the program, they were normal on testing. Chronic daily headaches (migraines) are still one of my issues, and have hampered my ability to fully engage in exercise as has chronic pain and very high (180+ bpm) heart rates with activity. I think part of the contention with many of these research studies are the narrow scope of the criteria (orthostatic HR increase.) Even with that though, my quality of life has improved, as has my ability to cope with my other symptoms. I would not discourage someone from attempting this protocol, whatever their issues. I would, though, encourage the hope that life CAN get better, though it can be a struggle to get there, as well as uplifting everyone to think that they are actually capable of doing more than they believe they can. Initially, if you check through very old posts of mine here, I thought this research was questionable and suspected cherry picking of patients in its findings. It took me years to get to the point of physically being able to attempt it, and it was against the approval of my current cardiologist. I had never met the people in Dallas before my appointment at 6 months into the program, and I was defensive of their potential attitude/demeanor. Quite honestly, I found that Dr. Levine's (and staff) confidence in my ability and improvement (as well as the doctors at Vandy) to be honest, sincere and incredibly helpful. My current level of function and athletic ability is certainly not "normal," but I'm greatly improved from where I was. It is no miracle, it is my effort. I was in pain before doing nothing, but now I am in pain doing something.

Hello all. I was diagnosed with Hyperadrenergic POTS in 2007. I am now 11 months into the Levine protocol. It is not really "physically difficult," but it is rigorous (you can't let it slide, you need to complete all the time for the week.) I no longer meet the HR criteria for POTS on most days and my extreme BP swings have normalized. I do not "grey-out" unless there are extreme circumstances usually related to body temperature. I still have other symptoms, but my daily functioning has definitely improved, my Doctor at Vanderbilt agrees. I was not asked to go off of any of my medications. My physical therapist had the complete protocol within 48 hours of requesting it. I was not part of the study. The HR zones are customized according to your orthostatic responses and may need to be adjusted frequently during the course of "conditioning," which is one reason you don't want to be doing this all by yourself. Other issues can crop up during training that need to be addressed by a physician as well, I had/have pain and GI issues. It also helps to have a physician "cheerleader" with a realistic understanding of what is going on. I found Dr. Levine to be exceptionally caring and kind. He addressed my concerns and issues and consulted with other doctors on my "stranger issues." My doctors can call on him with any questions. Am I cured? Yes, depending on criteria (HR and certain ANS tests.) Am I more functional? Yes, definitely. Do I still have physical issues? Yes, but not as debilitating as before. Was (is) it hard? Some days, yes. But it was never more than I was physically capable of doing. It requires a certain mental state of stubborn toughness on bad days, as well as an acceptance of only doing what you can do and that being good enough. There is no one cure for POTS. POTS is too multifaceted and probably encompasses several illnesses. But for me, the exercise does help.