firewatcher

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  1. MAYO or Vanderbilt? Which would be best?

    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.
  2. MAYO or Vanderbilt? Which would be best?

    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!
  3. 10 years later...back again.

    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 B!+@H 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!
  4. 10 years later...back again.

    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.
  5. 10 years later...back again.

    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!
  6. 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.
  7. Need Specialist in TN

    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.
  8. 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
  9. 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.
  10. 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.
  11. 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...
  12. 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.
  13. What Is An Unsafe Heart Rate Level?

    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.
  14. Pregnant...delivery Room/anesthesia Questions

    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!
  15. Exercise Progression?

    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.