firewatcher

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  1. As awful as you've read it could be, remember that it will be controlled and monitored by people who actually care and know what they are looking at. They actually want to know as much as you do. My experiences at Vandy have all been good ones. I hope they get you answers!
  2. 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.
  3. 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?!?!?
  4. 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!
  5. 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!
  6. 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
  7. 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.
  8. 10 years later...back again.

    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!
  9. 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.
  10. 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!
  11. 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 ***** 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!
  12. 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.
  13. 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!
  14. 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.
  15. 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.