L4UR3N

I'd make an appointment with a rheumatologist asap. In the meantine, they should also be testing your liver function, amylase, lipase and gallbladder.

I think that is awesome!!!!!! I totally agree with Tablet's post--she has some good points. I hope that your new job brings you much relief! I long for the opportunity to take a "lesser job". Unfortunately my curent job, although it is technically a well paying job, doesnt bring me enough money to cover all the bills I have. I really have NO idea how I'm doing what I'm doing. I often wonder how people get by when they can't work, and dont have anyone else who can help them out financially? I am terrified that this will happen to me....

I tested negative for AChR antibodies but was diagnosed with a sensory neuropathy. Very interesting!!! Never had my TNF alpha or IL-2 levels checked.... Good articles!

I am wondering what a beta blocker combined with DDAVP would do... I am dizzy on beta blockers too, although I assume the root cause is from decreasing the heart rate without correcting the blood volume issue. Rama have you tried a beta blocker with your florinef?

After the recent research article was published on the use of DDAVP in POTS, I am wondering if anyone has any personal experience with taking this? If so, was it helpful? Any side effects that were intolerable?

Salt seems to help me out in the short term, though I'm not sure about long term. It seems to cause more edema which further depletes the intravascular space. I dont regularly salt load, but I certainly dont restrict it either. I usually reserve the salt loading for times of "crisis" when I need a quick bail out.

I have a lot of trouble with vitamin D...but nothing too horrible. It just makes me feel generally unwell. I am taking it now but in very small doses which are probably ineffective LOL. I am also taking cod liver oil which is FULL of vitamin D , and I have had no issues at all with it. If you are truly scared of taking the vitamin D, maybe try some cod liver oil (Id try the caps rather than the oil cause it tastes nasty). What are the listed side effects that scare you?

Thanks for sharing this video-- interesting ideas! While I dont personally believe that CFS and POTS are the same thing, anyone who has chronic tachycardia is going to lack energy for sure. This clinic seems to focus on the mind/body connection and belief that if you want to be better, you can be. The mind defintely has an extremely strong influence over the body, however it is limited when it comes to curing actual physical problems (such as genetic defects). I do believe though that a positive outlook and believe in yourself and your abilities can benefit ANYONE.

I wake up tired no matter how long I have slept. That's usually my first thought/feeling.

Yep. SVT, PVC's, PAC's, sometimes brady as well as tachy.

Any type of persistent and prolonged tachycardia will lead to an increase in heart size (your heart is a muscle and responds as such) and can lead to cardiomyopathy. Cardiomyopathy in turn often leads to heart failure and many other problems such as dysrhythmias. There are many articles and have been many studies on tachycardia induced cardiomyopathy, and the association is not casual. You are definitely in a tough spot . If it is possible to get your heart rate consistently under control (eliminate the tachycardia as much as possible), it would help you at least not progress with the heart failure. I know that does not help your current fluid balance issue, but may prevent it from becoming even worse. What is your EF (ejection fraction) if you dont mind me asking? You can find it in your echo report--it would be listed as a %.

I had a natural doctor tell me that if properly tested about 70% of people come back positive for lyme. There are more insects than just ticks that carry it, and there is a questionable sexual transmission as well. I definitely wouldnt rule it out if you think there is a possibility (if you have been bit by a tick or a black fly you should definitely be checked). I actually had the EM rash twice in my life, so I am pretty certain I have lyme in my body-- however, I also know that my dysautonomia did not stem from that, but unfortunately is genetic (sister has it too). I can say that since the first time I was bit I have had horrible vertigo and headaches, which I did not seem to experience before. Other than that, the tachycardia is just bad genes .

Thanks for posting this. I was on zithromax a few years ago and had so many PVC's that I had to ask my doctor to prescribe something different. It's now listed as an "allergy" in my chart and after reading this, I'm glad!!

Ive had a few times where this has happened to me as well--very scary!!! It seemed that no matter what I did I could not get my heart to beat faster. This last time it happened I ended up eating extremely spicy peppers and peanutbutter (which always makes me tachycardic) to try to help myself. It's funny how Ive become so used to the tachycardia that it doesnt scare me anymore, but the bradycardia is terrifying!!!!

Just bringing this interesting topic back to life . btw, to those who are wondering about the florinef, I think the reason they said she cannot miss one dose is probably due to electrolyte imbalances which can set you up for a whole host of very dangerous things. I'm curious about the Vasotec too...

I am SOOOOO happy for this article!!!!!! It seems like such common sense yet it has taken them all these years to actually do a study on this, lol. I have long wanted to try this drug, yet no doc would prescribe it to me given my hypertension. Ive never had the water deprevation test for DI, but have seen 2 endocrinologists who played around with the idea since I pee out 6 liters/day. They both decided against testing me for it because I could hold my urine at night. Given the dramatic improvment that I get from a saline infusion, I can only assume that this drug would be extremely beneficial to me. Thank you SO much for posting this. Best research Ive seen in quite a while....

Not sure about everyone else, but for me I dont think it was the bactericidal properties that were helping me. I have taken many other broad spectrum antibiotics in the past but never felt any better. Keflex was the only one that had this effect on me (twice!), so I have to believe it is some side effect of the medication which turns out to be beneficial for POTS. Just not sure what that side effect is.....

=A potsy wedding . You could try something like this where you are sitting down.

I am a nurse and had never even heard of EDS before I was diagnosed with POTS. Unfortunately the medical community is largely uninformed about these disorders, and doctors who do actually know what EDS is, think that it is too rare for any of their patients to actually have . When I was initially diagnosed with POTS I did a lot of research trying to figure out what could be causing it. I literally went to my doctor with a long list of things I wanted to be tested for. He tested me for everything BUT the EDS, stating that it was too rare, and in all his years of practice has never seen anyone with it. At the time I was content with this and didnt pursue it further. It wasnt until I saw a neurologist who specialized in POTS that EDS was brought into the picture again. He asked me how flexible I was and had me demonstrate several things, then sent me to a geneticist who diagnosed me. After learning more about EDS so much of my life now makes sense. Seemingly unrelated medical problems are actually all due to EDS. While I am happy to have a diagnosis, I'm frustrated by the lack of awareness in the medical community. I have to explain everything any time I see a new doctor. I have met several doctors who claim to not even know what EDS is, although they are taught about it (briefly) in medical school. Nurses on the other hand, are not taught about it. I feel fortunate to know what it is, and have had several patients that I have suspected to have it. We just really need more education and awareness.

Morphine does not burn when given IV push so it does sound like your IV may not have been completely in the vein.

That theory makes good sense to me . I'm a firm believer that all lab tests should be drawn after standing for a while, and values that have potential positional changes should be drawn in all 3 positions. It doesnt make any sense to draw labs when sitting down since our symptoms only occur while were standing.

Also would like to know if anyone has had their BNP (brain natriuretic peptide) levels measured while they are standing? This is another one that I asked for but have yet to complete.

I recently asked my doctor to order orthostatic aldosterone levels after giving much thought to my inability to retain water ONLY when I'm standing. Aldosterone is supposed to increase incrementally from lying to sitting and standing, however mine actually went down and was low when standing. I am wondering if anyone else has had these levels ordered in this way, and what they showed?

My mom used to be very flexible like me but now she has very bad arthritis and is super stiff. She can still bend down and nearly touch her elbows to the floor though hehe. When I first read about EDS my gut reaction was "I dont have that". It wasnt until I started trying some of the things that other people with EDS could do, that I realized it might be a problem. Then the geneticist pointed out all of these other things in my life that were caused by the EDS. Suddenly everything made so much sense

I have this faintly on my arms and legs! Weird. Ive had pots my whole life to some extent, but got much worse after a GI viral infection followed within days by bronchitis. I have good days and bad days but I dont ever remember a time when it wasnt there to some extent. I've definitely had periods of time though when I thought I was "better". At this exact moment in time I feel the best I have in years (due to an antibiotic?).