sugartwin

Well.... there's a long list of disorders that can cause POTS here: http://www.dinet.org/what_causes_pots.htm It's really your doctor who ought to know which blood tests to run. Tests for diabetes, autoimmune diseases like lupus and celiac, things like that. Since you mentioned easy bruising, you might want to get worked up for Ehlers-Danlos Syndrome, which has a high association with POTS. Especially if you have other symptoms like hypermobility and joint pain. POTS doesn't explain your easy bruising, but EDS might. POTS would explain your feeling thirsty though, I think. NCS is neurocardiogenic syncope, so if you're not passing out, I don't think you can get that diagnosis. It can exist alongside POTS though. If I recall correctly, Pure Autonomic Failure tends to cause outright orthostatic hypotension rather than POTS. But you can test your catecholamines. If you have PAF they are low and don't increase on standing. Anesthesia, flying and dental work give some people no trouble at all. Other people have tons of problems. There is no one causes for POTS so very few things are true of all POTS patients.

I have EDS and am not hypovolemic, and I honestly feel that someone who had hypovolemia on top of whatever causes the vasomotor defect in EDS would be looking at profound disability if not a life-threatening situation. What I'm trying to say is that the latest research indicates that EDS patients' blood vessels don't leak or stretch or anything of the sort. Rather, they don't constrict properly. That's why I have POTS even though I'm not hypovolemic. There's plenty of blood to go around, it just never gets to where it needs to go. Even if vessels were leaky, that wouldn't cause hypovolemia. Or at least, not strictly. Blood that leaks would still be picked up by a blood volume test because it's not like it exits the body entirely. Hypovolemia would have to come from some sort of error in whatever tells the body to retain the right amount of fluid and manufacture the right amount of blood cells.

This is a good article. I suppose from this perspective that EDSers blood vessels aren't "stretchy" but "loose" instead. "Loose" when they should be stiffer. If excessive collagen deposition leads to vascular stiffness and hypertensive states, then perhaps deposition of diminished or otherwise abnormal collagen leads to looseness, lowered blood pressure and the kind of autonomic dysfunction that EDS patients exhibit.

Let's see. I was mis-diagnosed with: bipolar disorder asthma fibromyalgia anxiety autism (this was my fave--diagnosed autistic at 28 years old!) malingering "psychosomatic" hysteria/conversion disorder deconditioning drug-seeking chronic fatigue syndrome I think malingering/drug-seeking was the worst, because then the nurses treated me awfully. They wouldn't help me off the floor when I fell, they wouldn't help me get cleaned up, they wouldn't give me anything for pain. I was so miserable that I contemplated discharging myself AMA.

Well, first off I have EDS and the association between dysautonomia and EDS is well established. I wonder if some of the people who have flexible joints but no EDS diagnosis are people with EDS who are undiagnosed. Joint mobility starts to lessen as time wears on. My dysautonomia symptoms started as a child. I've always had poor exercise tolerance. My classmates' pulses would be 75 and mine would be 88. It was blamed on my being out of shape, even though I wasn't. But I could never run laps in gym. I'd do two laps and be exhausted, unable to run farther. As I took up running as a hobby in junior high, I always wondered why I couldn't never run farther than 1000 meters, no matter how hard I tried. I pushed myself hard one day and ended up collapsing. After that I concluded that I just simply couldn't run distance for some reason. I always knew, however, that that was something about me that wasn't normal. Other people could, for some reason I couldn't. After a bad virus when I was 27, my POTS symptoms started. I knew something was wrong right away, that I was physically ill with something. I didn't make the connection between how I felt as a child and how I felt after my virus for several months. When my sister tried to help me up one day, she partially dislocated both my shoulders. I thought to myself afterward, 'That hasn't happened to me since I was a kid.' When I underwent surgery, the nurse asked me if anyone in my family had negative effects from anesthesia. By then I had been formally diagnosed with POTS. I remembered that my grandmother's heart always stopped when she went under anesthesia. The nurse asked me why and I said slowly, "She probably had the same thing as me." That's when I realized the whole mess was related. It was all related, it was all hereditary. I had the same thing that my grandmother had, which was EDS. I don't have fair skin. I'm black. And as black people's skin tone goes, mine is medium.

She mostly likely thought you were referring to acquired connective tissue disease like lupus, rheumatoid arthritis, where you have to wait to see what the symptoms "turn into." But if your daughter has a heritable connective tissue disorder like Ehlers Danlos her symptoms are manifesting in manner that can be diagnosed right now. And should be, as soon as possible. There is no treatment and no cure for EDS. But because your daughter is relatively young she can start protecting her joints now and save herself a lot of pain and trouble when she gets older. You need to see a geneticist to be diagnosed, preferably one who specializes in connective tissue disorders. Don't bother with a rheumatologist. Most forms of Ehlers-Danlos Syndrome are diagnosed clinically, which means you don't need a biopsy or even a blood test. It certainly sounds like she could have it what with the bruising and the hypermobility. Contrary to popular belief, you don't have to have stretchy skin.

After the way my doctors have treated me, I'd be stupid to give them my unquestioning trust. I can barely manage to dredge up basic respect for them. It's hard not to tar them all with the same brush. Such horrible things have happened because they didn't trust me. They never took my complaints seriously, attributing them to mental illness and then to malingering and drug-seeking. They yelled at me, insulted me, refused to lend their help when I needed it most. After the first nine days that I spent in the hospital, I told a friend that if I didn't need someone to write my prescriptions I would never go see a doctor again in life. I still do feel that way.

I live in Cleveland and have seen both Fouad at the Clinic and Chelimsky at UH. I have no experience with Chemali. I'd say for diagnosis that they are both equal, although I had a wretched experience at the Clinic that left me trying (but failing) to sue them and having to settle for never seeing them ever again.

I have it as well. My abnormal periods started at the same time as my POTS symptoms, and I strongly suspect there is a link there. I read a study that people with CFS (which has a strong component of dysautonomia) are 100 times more likely to have endometriosis. When my gyno was explaining to me why he thought I had it, he said that rare diseases 'run in packs.'

I do see both Chelimskys and I agree that they are awesome. I was so disgruntled after my Clinic experience and it was so helpful to see him. He was interested in getting to the root causes of my POTS and after my mother and I showed him our stretchy skin, he referred me to the geneticist who eventually diagnosed my EDS. I think he's brilliant. I've only seen Dr. Gisela once so far, but I find her to be just as attentive and compassionate as her husband.

I live in Cleveland, and the Clinic was the first place I ended up being seen for POTS, which was undiagnosed at the time. I have to say that I had a negative experience. That said, Dr. Fouad really is excellent at testing, and her nurses and techs are very familiar with dysautonomia.

I'll be frank. CFS is a joke. A really unfunny joke. The way the diagnostic criteria are set up in the US... It's like you're tired...hmm...some bad headaches...hmm...Oh, and by the way if you have any other illness that is causing these symptoms it isn't CFS! So technically, getting diagnosed with EDS and small fiber neuropathy means I can't have CFS. What's more to the point though, as far is the United States go, some people with CFS have POTS...and some don't! Some have flu-like symptoms, some don't! The way CFS is defined in this country offends my scientific mind. How anyone is able to conclude anything about CFS with such lax criteria is beyond me. I don't think it's as easy as POTS being equal CFS either. Would that it were that simple. I would advise anyone to actively avoid a diagnosis of CFS. Unless the doctor is able to tell you exactly what he plans to treat you with and why he thinks the treatment will work, the diagnosis of CFS will do nothing but cause other doctors to view you as at best a hopeless case and at worst, a fraud. I speak from unfortunate experience.

I love the third design. I think it gets the point across best and I like the aesthetics. I would wear that shirt!

Well, I was hoping for a lot more data, but I think it's nice they've finally started researching this. I started having symptoms very young...elementary school. But of course, I didn't know what it was...I barely figured out that what I was experiencing wasn't 'normal.' Every insult to my body worsened my autonomic dysfunction. Surgeries, major illnesses, even intense emotional stress. I see they're still on the 'excess dilation of the veins when upright' idea. I think this is the least likely theory. Rather for whatever reason the vasculature just doesn't respond to chemical provocation as well as it ought to. And then there's things like CCI to consider which is a whole other etiology...which nevertheless leads to similar results. I sincerely hope that more research is done in this area.

I think this happens to everyone. It happens to me. I think it's the bismuth in it. If you stop taking it, you're tongue will turn back to normal shortly.

An interesting poll. I had a very gradual onset to my POTS. I was...23 or so (29 now) when I started having palpitations which lead to a holter monitor which showed intermittent SVT and PACs. The cardiologist said it was "just the way [was]" a phrase that I would hear a dozen more times as I got older. Before that I had exercise intolerance from the time I was a little girl. I wasn't overweight, but I could never keep up in gym class. After I started grad school at 25, I started having "panic-less" panic attacks. My heart would race, I'd get short of breath, but I never felt any emotional symptoms with them. They were far enough apart that I decided to ignore them (plus I had no insurance at the time.) Then during my last year of school I caught a bad virus that sent me to the hospital and the rest is unfortunate history. The symptoms that were just every once in awhile became continuous. Eventually I would find out I had EDS. I was really interested to read this because I have a hunch that the patterns of onset in POTS can gives clues to the underlying etiology. For me, it's clear now that while I didn't always have POTS, I always had something "off" in my ANS.

Hey, I'm in Cleveland! Personally I see Chelimsky at University Hospitals of Cleveland. He's difficult to get in with (aren't they all) but was the only one who found out the root causes of my POTS (small fiber neuropathy and EDS) He even swung by to see me while I was admitted recently although he wasn't in charge of my care. I had much less luck at the Cleveland Clinic. Even that said, I've had even less luck with other doctors. Every cardiologist I ever saw had to be told what POTS was. The chief of neurology at my local hospital had treated POTS patients, but said I was way over his head. In general, if you have a difficult case, going to a doctor who doesn't specialize in dysautonomia probably won't yield good results unless you can find the root cause of your dysautonomia and that turns out to be treatable.

Erika, I feel for you so much. If I were anywhere near you, I'd come and see you myself! Your experience reminds me a little of when I first got ill, not knowing what was wrong with me. I couldn't stand up for more than a few moments without falling and a round of doctors told me that somehow...it was my fault. I would cry every night in frustration and misery, quietly, so they couldn't accuse me of being depressed. I can't believe that that doctor called you deconditioned, as if you were lying around by choice! And the behavior of your mother and ex-husband...it's bad enough to be sick without having anyone to support you. I'm so happy that Vanderbilt accepted you as a patient, and I hope that experience will lead to the kind of care and compassion that have been missing so far. You'll be in my prayers.

arizona girl, Sorry for the late reply! Even though I was sad to learn it was EDS, I'm happy because it means I don't have to hear how I'm just "stressed" or that my pain is imaginary or that I'm drug-seeking. For the most part, anyhow. In any case, I take Lyrica for my neuropathy, 450mg in three divided doses. Before I even knew what was wrong with me, this medicine gave me a good percentage of my functioning back. Interestingly, when I was in the hospital recently (for dehydration and hypokalemia secondary to gastroparesis) IVIG was one of the treatments mentioned, but I guess they decided not to go ahead with it.

NSAIDS like ibuprofen can raise blood pressure. It might be something like that.

futurehope, I'd say yes, even though knowing what is making me sick isn''t the same as 'getting well.' EDS has no cure, but when I found out I had it, I was finally able to get effective pain relief and physical therapy. Before I was just having POTS+severe pain, and no one was really willing to treat the pain. Those that did assumed it was neuropathic pain, which it wasn't. When I discovered EDS I was able to get that pain treated and find effective ways to reduce it (like not sleeping with my knees hyperextended.) I was damaging my joints without realizing it because thinking I was 'normal' I assumed everyone had the same range of motion that I did. On the POTS side of things, I discovered that since I had small fiber neuropathy, drugs that treat that tend to take care of a whole swath of symptoms at once, like my light and noise sensitivity, gastroparesis and the violent swings in my blood pressure. Instead of trying to go after each symptom individually, I can get several with a single medication.

I've had a ton of testing done, including holter monitor, full battery autonomic testing and hemodynamics. There might be a few other I'm forgetting. Based on the results, it's clear that I at one point had an autoimmune small fiber neuropathy but it isn't progressing and I suppose I'm just stuck waiting for the damage that was done to heal up. In my case, the cause of my POTS turned out to be EDS, aggravated by a small fiber neuropathy. I'm sorry I can't offer you any advice on plasmapheresis. Personally, I was dead set on finding the cause of my POTS because it affected so severely that I couldn't go out in public without risking fainting or seizing (or both.) Fortunately I also live in Cleveland so I had the facilities with that kind of capability nearby. Ideally, everyone would be able to get to the root cause of their POTS. I really think that it's more of a symptom than anything else, and going after a symptom without tracking down the cause is hit or miss.

Quite closely related. The relationship is just now being fleshed out. I asked my geneticist what she thought caused POTS in EDS patients and she said that the blood vessels, for whatever reason just don't seem to respond as well to the chemical provocation that says "constrict! constrict!" Either there is problem with the way the blood vessels themselves are made, or a problem with the nerves that carry the signal.

Lenna, My doctor ordered a hemodynamics test, injecting me with a radioactive marker that binds itself to red blood cells. Then I would change positions (from lying to sitting) and they would 'watch' what the marker did...where it went, how quickly, whether it 'pooled', as well as how many red cells there are overall, and their size. The results take a couple weeks to come back.

Not necessarily. In my own case for instance, my blood pressure would fall, my heart rate would increase, but my blood volume is normal. I tend to think that hypovolemia in such cases must be pretty common though, because when my doctor (who is one of the 'big names') found my blood volume was normal, she didn't know what to do with me anymore.