lejones1

I'm assuming it was just prompted by cost cutting. They give detailed rationale here - http://www.anthem.com/medicalpolicies/policies/mp_pw_c160708.htm. It refers to a couple of studies that found that the tests aren't essential to diagnosis and that testing doesn't necessarily change the treatment plan. It's seems ridiculous - I know that for me, testing did change my treatment plan. I also wouldn't know that I have SFN if I didn't have a QSART test - skin biopsy came back normal. A huge part of the reason that testing doesn't change our treatment is because there isn't much known about the mechanisms of dysautonomia, there are only off-label treatments for us anyway, and they don't always work. That certainly doesn't mean it's pointless. This is so frustrating! I'm writing them an email - they don't own my insurance company but I think this matters so much to all of us.

I have a couple of pairs of thigh-high 40/50 - Juzo and Medi brands. They're REALLY strong and quite a workout to get on. I actually kind of wish I'd started at a lower strength but this is the only level my doctor would prescribe, and since they're covered by insurance it's way cheaper than buying them myself. And they do work! My HR is actually noticeably lower when I wear them, by 10-15 BPM. I usually have to put my legs up in my chair almost immediately when I sit, but when I wear these I can sit for a while with no problem. It's easier for me to stand longer. Occasionally I do have some trouble with them - it's a kind of funny lightheaded feeling that I'm almost sure is from wearing them, but I don't know why. It only happens every few weeks though. I have slightly less trouble with the Medi pair sliding down and bunching behind my knees (which is really uncomfortable), but since these are my first two pairs I don't know if those are a brand thing. Welcome to the sexy world of compression stockings

There is more specific testing for subtyping and I would definitely encourage you to pursue it. The three big subtypes I think of are hyper, neuropathic, and hypovolemic. Then I guess there's also the mechanism behind EDS-related POTS (stretchy veins? May be wrong about that.) A lot of the testing does require special equipment that they'd only have at a clinic but not all. I have neuropathic POTS, which was diagnosed with a QSART test and punch skin biopsies. You can also have a thermoregulatory sweat test. These all test for small fiber neuropathy (autonomic neuropathy is a subtype of this). However normal test results don't necessarily rule out neuropathic POTS. My biopsies were normal but QSART was abnormal. Many people with neuropathic POTS also have sensory SFN, which causes burning/tingling, numbness, and/or pain, usually starting in the feet and hands, so that could be a clue. Neuropathic POTS is associated with immune-related causes - autoimmune or post-viral. You may be able to get a non-POTS neurologist to run some of these tests on you if they're otherwise familiar with small fiber neuropathy (since it's quite common with diabetes). Faintinggoat gives a good explanation of hypovolemia. I've never been fully tested for that, but I did have my aldosterone level tested and it was extremely low. Aldosterone is the hormone that makes your body retain salt and, by extension, water. A very low level suggests chronic dehydration if not hypovolemia. This is a simple blood test you could get any doctor to run. I don't know much about hyper POTS because I've never been tested for it, but I know many people on here have so hopefully you'll get some good answers! Finding the mechanisms behind your POTS should definitely help with a treatment plan. I was put on a lot of beta blockers when I was first diagnosed and they made me feel AWFUL. At the time I was accused of being stubborn and dramatic by my doctors, but after seeing a POTS specialist I found out those were absolutely the wrong thing for my case, and I should've been tried on Florinef or Midodrine instead. So further testing can definitely help save you some frustration!

I have the same Omron monitor and after about 6 months started having the same problem with the error message. Or sometimes it just wouldn't inflate all the way. So I called the company and they told me to mail it in for repair...a couple of weeks later I got a brand new one back, free of charge. If yours is still under warranty you may want to try that.

Do you have any family history of hypermobility at all? Or any family history of things associated with EDS, aside from your dad's MVP? Who diagnosed you with EDS? Was it an expert? Do you feel like all other possible causes causes have been looked at as well? If you don't, then definitely keep looking! Even if you do have Personally, I have some sort of immune-mediated POTS and SFN. But my POTs specialist also wants me to be evaluated for EDS because I'm hypermobile and have a family history of hypermobility. He doesn't think finding one cause rules out secondary causes and I definitely agree (although I'm sure some doctors are happy to stop searching once they think they've found a simple answer!). So don't give up! I don't know a lot about EDS but from what I understand the inheritance pattern isn't always super clear. I know 2 people with POTS definitely caused by EDS and neither has a family member with EDS but both have family histories of EDS-like symptoms. I think the genes that cause the hypermobility type can cause also cause benign hypermobility so it might show up that way. I'm not sure if your pictures are "freaky" or not. I can do those as well, but that doesn't mean they're normal. Were there certain things you could do with joints that made your doctor think you had EDS?

I did it and I think it's pretty cool. I learned I don't carry really scary genetic diseases which is good if I have kids. I learned I carry double genes for hemochromatosis, which is pretty important to know (although I was having it confirmed through a doctor anyway). Also it's just fun to look through for more minor things like eye color, personality traits, and other minor things - like I'm immune to noroviruses which probably explains why I never throw up! Unfortunately I don't think many dysautonomia genes, or the genes of the common related illnesses, have been mapped yet. But hopefully that will happen soon! Hanice, it is reliable. It's a DNA test and DNA is found in your saliva. It's not commonly used because the idea of personalized, gene-based therapy is quite new and not widespread, especially in mainstream medicine, but will probably become a lot more common in the future. I see an integrative doctor and they encourage their patients to get it so they can optimize supplement recommendations, etc. A bigger issue is probably privacy - whether you want a company to have your DNA, whether you want your results on their servers, etc.

Sarah, does your HR get that high without exercise? My upright HR is usually 110-150, depending on the day, but a few times a month it'll get up to 210-220, just from being upright/walking around. I've had a thorough cardiological workup and been told I'm fine as long as it goes down when I lay down (and it always does). But it still kind of weirds me out. My resting HR is in the 50s so it's quadrupaling. I mean...how does it get that high?! I'm just curious...if this happens to you too without any exertion, I'm wondering if you've ever gotten an explanation.

I agree with Katybug about the albuterol. I don't think it's actually bad to use with POTS if it's just occasional (or to get you through this), just aware that it can definitely can palpitations. Another thing is that you be hyperventilating a little bit, which can cause palpitations. I have asthma and I know it's really common to hyperventilate with it and when I've had bronchitis I've had the same sort of feeling. Sometimes if it feels like you can't catch a breath, you can sort of starting gasping for breath and it'll set off an unhealthy breathing pattern. Try consciously regulating your breathing and see if it helps.

During flare ups, I look pretty bad. I'm already skinny, but losing a few pounds pushes me into bony territory. My skin gets super pale and I get terrible dark circles. I can't stand light so I wear sunglasses a lot. In photos from those periods, I look really glassy eyed, like I have the flu. And I move weirdly - slow shuffling. I'm pretty home bound then but if I go out to the doctor, I imagine I look like a sickly little mole that's emerged from the ground. (And my family has confirmed this as an accurate description!) On the bright side, during better times I even think I look normal! The only thing I notice in myself is really dry skin.

Unfortunately a TTT is the gold standard diagnosis for POTS and without one, it will be difficult to get a diagnosis. Have you been able to find a doctor to discuss this with, to see if they think it may fit your symptoms? Can you find a doctor to give you a poor man's TTT (just standing in office)? Here is a physician list: http://www.dinet.org/physicians.htm Or you can post your location on here, and maybe people can give you recommendations within your state. Regardless of whether you have POTS, another undiagnosed condition, or if it is really anxiety, it can only help you to find an outlet to deal with these fears. Would it be possible for you to start seeing a therapist? Or do you have a close friend or family member that you trust, who you can discuss your fears with? I've dealt with periods of anxiety and sadness since getting POTS, and I've found it's very helpful to be able to sort out the irrational fears from the genuine concerns that can be addressed. Getting caught in a cycle of fear and sadness will only make you feel worse, emotionally and physically. I'm not at all suggesting you just snap out of it because I know it's not that simple - but maybe you can reach out to someone who can help you work on your fears. You may also consider trying meditation and deep breathing. If you look on YouTube, there are some wonderful guided meditations.

I bought a pair of Jobst 30-40 for women on Amazon, but I know when I was searching I saw some for men as well. You can find pretty good deals on there too - at least worth a look!

23, 22 when symptoms clearly started. But looking bad, I think maybe minor symptoms since 19 - when I had mono, like a couple others mentioned!

Thanks for sharing, looneymom, that's so interesting! How are you addressing your son's sleep issues? You say he's sleeping through the night but still may be sleep deprived? Personally, I've had a very similar experience to what you describe. Definite correlation between sleep quality and all my other symptoms (I also get severe headaches and touch sensitivity during bad periods.) Trouble sleeping is one of my first signs of an oncoming "crash" but I can't figure how fix it. It seems to be a side effect of something else rather than an inherent cause, I just can't figure out what that something else is! Did your son's doctors suggest any causes of sleep deficiency?

I broaching the topic of anti-depressants probably is difficult, since so many doctors like to blame chronic illness on depression/anxiety and ignore physical issues. But there is so much we have to deal with, both physically and with the emotional strain of having a poorly understood chronic illness, that I think some level of depression and anxiety is a perfectly normal response and hopefully a good doctor would understand that and work with you. I'm not sure sure if that's something you should ask your primary care doctor about or find a psychiatrist? Also, I would strongly recommend seeing a therapist or psychologist for talk therapy in addition to medication, especially if you do feel you're on the verge of a mental breakdown. I don't know if your mental health issues are due to dysautonomia or a separate issue, but regardless talking it out with a professional can really help you sort out feelings and make everything seem more manageable. Good luck, I hope you're able to get the help you need very soon!

I can't be 100% about this but I asked around A LOT - at the major hospitals and a few people I know in NC with POTS - and there no POTS specialists in NC. Dr. Klein was the only one and as of a couple months ago, she was still out on medical leave indefinitely. From my personal experience and what I've heard from other people in the state, all we have are cardiologists who maybe have a little POTS experience, but it's not their specialty. If you'd be willing to drive, I would highly recommended Dr. Chemali, a neurologist in Norfolk, VA. Since it's coastal, it shouldn't be much farther for you than inland parts of the Carolinas. I saw him for the first time in July and he was great - 90% of his patients have POTS/dysautonomia and he actually believes in looking for a cause rather than just medicating. He also sees a lot of out of state patients, so he'll schedule it so you can get all your testing done while you're there. I think he has a really long wait list but if you get a referral from your current doc it may speed up the process - the scheduler told me I was bumped up by 6 months because I already had a diagnosis, not sure if I was just lucky and they had a cancellation but it's worth a try.

I have a low resting heart rate too, usually low to mid 50s, but sometimes when I'm not feeling well it might be higher. Sometimes I have periods where it drops below 50 and I feel kind of tired and out of it - not sure why, but I haven't had it in a while so I try not to think about it! I also asked my cardiologist and he said it was good thing...so I guess I'll believe him. I was in pretty good shape before getting sick so I guess it makes sense. My dad has a low HR too so maybe you're right, maybe it's a hereditary thing!

Hmm. Decaf coffee does affect me, but not like that. My body just responds to a tiny bit of caffeine the way most people would to chugging multiple cups of coffee. I've even had hot chocolate that sent me into a crazy caffeine buzz. Did you feel anything right after you drank it? And maybe the next day was kind of a post-caffeine crash?

That quick drop when you first stand up is called initial orthostatic hypotension and it's benign. I get it too and think I've had it since middle school (I almost always get lightheaded when I stand up). That was 10 years before POTS started and a lot of healthy people in my family get it as well. It confused the first doctor who saw my TTT results but another doctor told me it's actually not uncommon in young people, especially if they're tall and thin. I don't know if you fit that category but it's probably still a possibility. Here's some more info: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3029466/

I use my GP/internist for referrals. I'm only his second POTS patient so he readily admits he knows very little about it and related conditions, and isn't offended when I ask to see a specialist. Some doctors seem to have weird ego issues. Like "oh I know very little about this condition and have only treated it a handful of times, but don't you dare question me or ask to see someone who knows more!" I made that mistake with the cardiologist who diagnosed me - I asked for a referral to Vanderbilt, and he delayed for over 2 months with no clear explanation and refused to release my medical records. I finally had to get them printed by another doctor in his system, it was really bizarre. So yes, you're smart to tread lightly when asking for a referral! I really like christyd's suggestion of self-referral too, I might have to try that in the future.

Yes, unfortunately I think the whole diagnosis and treatment process for POTS seems to be very long and drawn out. I've had POTS for 14 months - it took 7 months to get a diagnosis, 2 more to find a doctor who would treat it (but only with beta blockers which made me even worse) and I finally had an appointment with a POTS specialist 2 weeks ago (the wait times are awful!). And he made it clear that I probably have more testing and lots of trial and error ahead before I can expect improvement. And yes, it can be very debilitating as well. I've been mostly housebound since November - there are ups and downs, I was largely bedbound for a few months in the spring but some weeks I can leave the house a few times. And I know there are other people on here in similar, or even worse, situations. I'm sorry about your terrible experiences with your doctors so far! I think most of us have been through that, but that's just ridiculous that an autonomic clinic wouldn't be very familiar with POTS. Your cardiologist may be right that POTS isn't exactly a cardiological condition, but he could at least help you find someone! Have you looked for any cardiac electrophysiologists or neurologists that may have experience with POTS? Maybe there are some other Canadians on here who have better recommendations. Have you considered travelling to America to see a specialist? I'm not sure how expensive it would be, but if it's financially feasible maybe that would be something to consider. This may not be a very positive answer, but maybe it'll help you to know that other people are going through the same thing. There are doctors out there who are empathetic and actually understand this thing (sort of at least), but it can take a while to find the right one and the find the right treatment and that whole process is so frustrating and disheartening. It seems so unfair that on top of the physically difficulties of being sick every day, we have to deal with doctors who don't believe us or say we're too confusing or too hard to treat, and sometimes that really brings me down too. I'm also young - 23 - so I understand the particular difficulties of being this ill at our age. It's a time when we expect to be very active and healthy, not worrying about doctors appointment and medications and whether it's even possible to get out of bed each day. I feel like I have more in common with the elderly now than with people my own age. And sometimes young people aren't very understanding - my parents friends are actually a lot nicer about it, maybe because they're more familiar with the idea of chronic illness. A lot of my friends have seemed sort of frightened/depressed by it, or just don't understand why I'm still sick, so it can be very isolating. If you're well enough to go, you might consider finding a psychologist or counselor who specializes in chronically ill patients - I see one sometimes when I'm feeling down and it's nice to have someone who understands where I'm coming from (at least has seen lots of similar patients) plus it limits how much I burden my family and friends with my fears and frustrations. Good luck finding a better doctor who will actually treat you! I think it's normal to be mentally down about this sometimes, but just stay hopeful that it won't always be like this, you will find someone who can help you.

I have eczema and very mild rosacea. I have the common type of eczema on my arms but also dyshidrotic eczema on my hands and feet. I've had eczema since childhood, rosacea sort of appeared over the last 5 years or so, and POTS a little over a year ago (but maybe with some odd symptoms before). I don't know much about the cause of rosacea, but eczema is part of the "allergic trio" along with allergies and asthma, so maybe there's a mild autoimmune connection. If there is any correlation with POTS, I would guess maybe both occur in people with at least a tendency toward autoimmune issues? I got eczema and rosacea from my mom's side of the family, and probably my susceptibility to POTS as well - there's a history of hypermobility, very low blood pressure, etc, so maybe that's support for a connection. But if there is a link, I'd assume it'd be weak, eczema at least is fairly common. I also have REALLY dry skin and it definitely came on at the same time as POTS. I guess it could be dehydration? Lotion is only sort of helpful.

I'm not sure what you describe is "normal", even for POTS, but I've had a lot of the same symptoms. Brain damaged is a pretty good way to describe it! One day my brain sort of felt "zapped" and then for the next 4 months I had bizarre head sensations, headaches that felt like a balloon was in a my head, what felt like brain inflammation, nausea, light/sound/smell sensitivity...really most of the things you mention except depersonalization. I was diagnosed with migraines because of the light/sound sensitivity, although my neurologist admitted my headaches didn't sound like migraines. Another doctor suggested mild meningitis (I had low grade fevers at the time too) but it was after the fact and never tested for. Almost as suddenly as the symptoms came, they went away, haven't had them in 2 months. Mine were also worsened by "exercise", any sort of exertion really, on bad days talking could set it off. I'm so sorry you're going through this - none of my other POTS symptoms have touched on how bad those 4 months were, I know it can be miserable. Do you know the cause of your POTS or do you have any other co-existing conditions?

I second the recommendation for Thermotabs, especially if you have a sensitive stomach, because they're buffered. I tried the regular (unbuffered) 1 gram tablets a few times and they made me very nauseated. But with Thermotabs I can even take them on a empty stomach and I just take 2 if I want a full gram. You can find them on Amazon.

Good poll! Maybe you could make a few more options for the last question though..like "nothing has helped it"

Hi and welcome! First of all, I definitely think you should definitely see a neurologist to rule out other causes - it's always good to be a careful and even if it is just fainting you may get a different perspective on it from a neuro. I do have a possible explanation though. I have the opposite pattern - I can get extremely wacky vitals (like 60/40, 50/30 sustained) and feel absolutely horrible but still not faint. A neuro explained that that was because machines only measure blood pressure at one point in our body, usually the arm, while fainting is dependent on blood in the brain, so somehow my body is compensating for the low BP and still getting enough blood to my brain to keep me conscious. I wonder if it's possible for you to have the opposite problem - even with a seemingly normal arm BP, you still may not be getting enough blood to your brain. Maybe something to discuss with a doctor! Good luck figuring it out!