firewatcher

Traci, I am looking too! I've been looking for over three years. I found a cardiologist in Atlanta who knows/studied with Dr. Robertson at Vanderbilt, but he is in no way an expert. I've only seen him once, so I really can't recommend him, but if you PM me I can give you his name. A lot will depend on where you are and how far you want to travel. Several Atlanta people on the forum go to Birmingham and like the docs there at the Mitral Valve Prolapse and Autonomic Dysfunction Center of UAB. If you search the forum, you'll find that this question has been asked frequently. I am currently looking for a new GP, my wonderful, former GP was too good and was picked up by Mayo. I miss him tremendously!

The test is legitimate and easy to come by. I've done similar tests online for "field of vision" screening for pituitary tumors. The pattern of results is proprietary, meaning that the doctor's results as to what substance causes what pattern deficit is known only to his office. There are other articles online that could possibly point you toward which exposure you've had, but you'll have to search since the number of chemical exposures is so great. This test was used by NY to determine if dry cleaning chemical exposure had damaged the nervous system of people living near the facility. (http://www.health.ny.gov/environmental/investigations/perc/info_sheet.htm) One of the questions that I would have is a chicken/egg one: can dysautonomia cause similar visual pattern loss as a chemical exposure, or did the chemical exposure cause the dysautonomia?

Linda, I looked a little more, and found an excellent suggestion from a "former patient:" since the doc has published his findings, it is all there for you to research! There are labs that will send you test kits for some of the same draws, you can take these to a sympathetic doc, who isn't going to make you sign away your human rights, and then you and that doc can go over the results. There are a few really smart docs left out there (hopefully you've found one) and you can get these books used at 1/4 the price. You've come this far educating yourself, don't stop now! Good Luck! Keep us posted!

The problem with many of these "cutting edge" doctors, is that they ARE cutting edge: the research is not there, validated or even testable! This doctor MAY be right, but no one will know until time and testing bears it out. The doc's info that I saw cited tests that only his lab could do and mentioned persecution from the FDA and the government. ANY doc that complains of government persecution raises a red flag in my book!

I guessed at who this doctor could be. IF it is who I researched, he is all over Quackwatch. There are several docs out there like this: the Savior/Satan doctor. The super-sick go to him to save their lives when all else fails and he either cures them or makes them mad...no in between. Medicine is a practice, there are successess, failures and improvements of all degrees, NOT polar opposites like what I saw. Don't mention names, I don't need confirmation. I would NOT go, or even call back.

Linda, Have a nice bonfire with the new patient packet and don't look back! This sounds like a scam!

"What is the 'nasty green' protocol from Texas?" I refuse to degrade POTS with a cartoon (Seussian) name. My heart is plenty big!

For everyone that has gotten great results from exercise, I am very happy for you and very envious of you! I am one of the "no-improvement" exercisers. I do it because it is good and right for my body to move, and I do not want my muscles to atrophy, because deconditioning WILL make POTS worse. That being said, I am a life-long POTSy, and a life-long exerciser: just not cardio. The HRs I see posted here look slow to me. My walking HR is in the 140s+, Lat pulldowns will send it to 180s+ and jogging...well, 220+syncope! At one time, I trained for over a year, six days a week, to try to jog; I have never broken a 15 minute mile. Even after that year of training, it was not a constant jog...more of a jog till I can't see then walk and hope I don't hit a mailbox till my vision comes back. My former primary doc (he was picked up by Mayo) would not approve me for a gym membership, I have to have monitored exercise. I tried to get him to let me do the "Nasty Green" Protocol from Texas, but he said, "As your doctor, I am telling you NOT to do this." For three years, I have exercised weekly with a PT doing Pilates. It sometimes takes up to a week for me to recover from the pain, extreme fatigue and muscle weakness that occurs. She says that I am stronger than the average person, but only for a few reps, then the muscles stop working and will not do more. Every doc I ask just throws that into the POTS bucket, so no explanation. I used to be more active: over a decade of Martial Arts, two years of weight-lifting, several months of building stone walls... But through all this, my HR has never come down. I used to think that your target HR was 220-your age, because I'd hit it consistently every time I'd walk on a treadmill...I still do, even on a BB. Does exercise help? Yes, but it hurts too! There is no "one size fits all" cure or treatment for this conglomeration of illnesses that is called POTS. Exercise helps, in moderation, just like eating right and getting enough sleep. Take a jog for me, knowing that you are doing something that I have only dreamed of doing. I'll wave as I drive by!

Know that we are praying for you, and sending all the postitive energy toward you that we can! (((((((((((((((Linda))))))))))))))))))))

dDAVP - synthetic pituitary hormone for volume expansion

You can do these supine/inverted. If you go to the back of the gym where the "big muscle" plays, there should be a squat rack (sometimes called a hack squat rack): you "lay" in the chair and push up against the weights. This is much easier than an upright squat, just don't hold your breath or you'll have serious BP fluctuations between movements. Get a spotter too, once you take the "stop" out, the weight has only your legs to support it, it could come down and crush you if the weight is too heavy. Enjoy!

POTLUCK, My endocrinologist does quarterly bloodwork and hormone panels to monitor me. Right now, the female hormones are low, and "barely adequate."

I believe that there is a subset of patients that has POTS-like symptoms because of deconditioning, BUT, few of us on this forum would meet that criteria. I do think that exercise is a valid coping mechanism for the underlying problem...if you can do it. However, one of the ways many athletes can tell if they have overtrained is by taking orthostatic measurements and seeing a greater BPM rise in HR: "Well rested athletes will show a consistent heart rate between measurements, but Rusko found a marked increase (10 beats/minutes or more) in the 120 second-post-standing measurement of athletes on the verge of overtraining. Such a change may indicate that you have not recovered from a previous workout, are fatigued, or otherwise stressed and it may be helpful to reduce training or rest another day before performing another workout."--Overtraining Syndrome and Athletes By Elizabeth Quinn, About.com Guide

Violent, teeth-chattering shivers? Yeah. When I walk down the frozen food section of the market or if the air conditioning is too cold, my hands turn blue/white and I can't feel my thumbs at all. I never run a fever and rarely can get a normal temperature reading from a thermometer.

Preeclampsia and POTS share hypovolemia as well. There was a study, that I can't find now, that mentions the chronic low blood volume persists after giving birth and creates a predisposition to hypertension later in life. I wondered why these women did not all get POTS or why POTS patients did not all have preeclampsia. There is some mechanism that is different for us. I thought it would make a good clinical trial, but never pursued it. BTW, I did not have pregnancy hypertension until the actual labor and delivery.

GOOD FOR YOU! I am giving you a standing round of applause (both for going through the endoscopy and standing up to an ingnorant doctor!) Do you have your results yet?

http://bodyodd.msnbc...nt-actors-story A nice, accurate story in a major news network!

B vitamins make me NUTS! I can't take them at all, they make me so much worse. My doc had me on them when I had mono in 2006 and my blood levels were crazy-high; much higher than they should have been given the amount I took. I don't think that my body knows how to use them, or can't absorb them...something. I also have extreme reactions to niacin: I looked like I've been boiled alive and burn and itch all over for hours.

I take melatonin nightly and have for several years. I took it while I had my only holter monitor study before my diagnosis and melatonin dropped my HR by 10-20 BPM within an hour of taking it. Beta Blockers abolish any effect of natural melatonin, so the nightly dose really helps me to sleep. I also have a sleep disorder where my melatonin rhythm is off, so morning BB and nightly melatonin does a good job of resetting that. HOWEVER...melatonin can disrupt hormones and can mess with your metabolism...so you can't just take it all day, it needs to be timed properly.

Howdy! Glad you found us, but sorry you are here! Your serum and urine osmolality (concentration of particles in relation to fluid) look good. The normal serum Osm range that I've seen is 285-295, so you are almost in the middle. When taken with the urine Osm., urine should be three times higher than serum, unless you are really over-hydrated. Your cholesterol is high, join the club! That is greatly considered genetic, though any MD will give you meds to lower it. The utility or futility of lowering cholesterol is debated in some medical circles. What would make me question the referral to the nephrologist is possibly the urine sodium or your serum Creatinine (which you did not mention.) I have high serum Creatinine which indicates that I have kidney damage (CKD stage 3---my SCr is 1.19-1.34 mg/dL.) Nephrologists are excellent problem solvers, so take all your previous labs and don't be afraid to ask questions! Good luck and keep us posted!

I SO hear you! I'd bring the tequila to the party if we could drink it! Gatorade will have to do instead. Some days life just stinks, today is one of those days...I know it was for me too. Say a few foul words for me too...I can't even say those, my kids would hear. Blast it all!

I have come off Klonopin a couple times for testing. Any weird-neuro symptoms were the same weird-neuro symptoms that I initially started it for. When I initially came off, these seemed far worse because I hadn't had them in so long. For me it was mostly the nasty headache and adrenaline surges. I also had some symptoms going back on it, mostly my eyes not tracking as fast as my head and brain. It can take a while for your system to "reboot" from everything the klonopin was suppressing. Just because a medication is past its half-life does not mean that it has cleared your system! It can take a while for some of these meds to clear. Good luck and take it one breath at a time if you have to! Klonopin is a HARD drug to come off of and you just did it!

This sounds like a really good doc. He is mentioned specifically in the "POTS patient in Ironman race" thread on this forum. I haven't seen him myself, but the woman in the article was highly complimentary. Good luck!

http://www.nctimes.com/blogsnew/news/healthcare/oceanside-rare-condition-not-enough-to-keep-woman-out-of/article_acd8ac77-4467-59bc-a00a-8e8f3e7dd7e7.html News article... Oh that we could all function this well!

Well, according to the Chinese Materia Medica, it is considered bitter and toxic and used to induce vomiting. It is also in only one formula that I have found. You can find all kinds of supplements with it in it for all kinds of autoimmune conditions, but they may or may not be "safe." As I tell my friend who is on this special "supplement" kick of the Moringa tree, I don't believe that there is a "single-substance" cure for every ailment. One plant will not cure every ill...unless it kills you!