margiebee

I can say that in my experience, my heart rate recovers quicker after exercise now than when I first started exercising. I believe that this affect holds true for when I experience tachycardia in general now, and I can notice a difference. I feel slightly better now, at least tachycardia-wise.

My diastolic blood pressure dropped by about 15 on my first tilt table test, but recently my POTS doctor did a poor man's tilt and it rose slightly. I am told that blood pressure fluctuations of all kinds are a POTSy thing/related to dysautonomia. I recently got tested for neuropathy, still waiting to get my test results back but it is my understanding that these things can result either from neuropathy or a general dysfunction in the autonomic system. I still have a hard time understanding it but I don't think any dysautonomia symptoms specifically point to neuropathy, you have to get tests for it.

So I'm gathering from the article that an abnormal Vasalva test doesn't necessarily indicate neuropathy? That's the main thing I'm worried about but I honestly don't think that could be the cause of it because I have had difficulty with things like yelling and blowing up balloons since I was a young child. I guess it all depends what my QSART results end up coming back looking like. Katybug I do only rarely experience syncope but I experience severe symptoms from pre-syncope pretty frequently so that would make sense.

Today I had both a QSART test and the autonomic test where you have to blow into a tube for 15 seconds. I don't have official results back from either, but during the breathing one I started blacking out, and the nurse said that my heart rate was high and all over the place. So I'm guessing I failed haha. Has anyone else had this test? What were your results? Any ideas what this means for me?

Dark scarring can also be a sign of Addison's disease or low cortisol. I also have pretty stretchy skin but when I've looked at the tests for flexibility for it (using your elbows and fingers and such), I can't do any of those things. Although, I have had a history of easily injuring myself at the joints for my whole life (constant sprained ankles and hyperextended shoulders), I have soft skin and TMJ as well as scoliosis. I suspect there's a possibility of EDS for me but I don't know if its even worth pursuing, unless I can manage to get the blood test for the vascular type.

I'm not familiar with any in NYC, I live in the Cleveland area and I had about 5 studios to choose from, I'd imagine you'd have more choices and possibilities. I basically either talked to someone from the studio or went to their most gentle class to get a feel for each one. The place I go to is just a local studio, nothing fancy they just happen to be the right fit for me.

I shopped around at different yoga studios to get a feel for who had the right style for me. I am doing much better now and I am able to do the "regular classes". I go to a studio that focuses more on calming types of yoga rather than the crazy cardio "hot yoga" stuff. They have lots of classes that are half meditation half slow flow, which is what I did at first along with getting some individualized help. They are very knowledgable of my exact health issues (more so than most doctors) and would come around to modify poses or give me different ones as needed. They offer a class called "yoga therapeutics" that helped me out a ton at first, it was basically all chronicly ill people in the class and the instructor, who had certifications in natural health studies types of things, would come around and help everyone with their individual issues. Now that I am doing better I have been doing a class on Kundalini yoga, which is still a slower-paced class but more strenuous because it involves holding poses for a long time. But that form of yoga focuses on awareness and is supposed to help restore the nervous system through that, and honestly that's the most help for me out of anything. I don't know what it is but I always just feel that my energy is so balanced in my body after I do it. If you get good results and are able to take on more of a challenge, I'd highly recommend it, its not crazy cardio so it doesn't amp up my symptoms. I think the important thing is finding the right studio, a lot of the studios around me are basically fitness centers that offer classes designed more for weight loss than improving health. But from the first time I went to the studio I go to I could tell they were more health-minded and the class offerings say a lot. I'll generally like a studio more if I see more restorative or meditative classes than "kick butt super toning" classes.

I have not been cured by any means but using yoga as part of my exercise routine has made a big difference, I got training on poses to do for my specific issues and it works out very well. I feel that yoga helps to strengthen my body as well as regulate my blood flow much better. I am interested in which herbs or supplements people use, I've found a few things that seem promising but its hard to research it because POTS isn't well known.

Yes, if I'm reading this correctly I think I experience similar patterns. Oftentimes I'll have a period of time where my blood pressure is low so I feel achey, tired and just crummy but I'm not experiencing tachycardia. Then I'll have these episodes of tachycardia where my heart rate just spikes and I can't even stand. Then I'll generally restore back to pretty "normal" vitals for a while (my blood pressure will go up to a normal type of range). This is actually generally the pattern that my POTS follows. My doctor said that it could be adrenaline spikes, or it could be my body's attempt to correct for the low blood pressure (which of course is a total overracted attempt because my autonomic systems are screwy). I think that other people have surely experienced something similar as well. My POTS is sort of fleeting, I don't feel like complete garbage every single day. My vitals can be beautifully normal one day and really off the next. I have pretty wild swings in it.

I have tried it, it tastes great and is effective but I had to stop using it recently because it contains sorbitol which causes me intestinal problems. Huge bummer.

I have absolutely miserable reactions to mosquito bites, they swell up so huge and actually become painful at a certain point. I also have severe allergic reactions to bees, including anaphylaxis.

I actually have had night terrors for my whole life (since I was a toddler), where I have extremely vivid dreams and I start thrashing around and screaming. But when my POTS symptoms are bad I do not get them at all. I think that when my symptoms are bad I don't fall into a deep sleep.

Well I use the compression stockings with no toes on them. I feel like in that case it doesn't matter so much what your shoe size is because your feet can extend as much past the end of the sock as they need to. They work just as well for me, I get them because I have small feet and the full footed socks are too big on me.

I actually have very low cortisol, bordering on Addison's territory but not quite. The doctor who ran the test said if its not completely out of the range it doesn't matter, but later on my more "holistically minded" primary care doctor said that it could be something called adrenal fatigue which can be caused by the stress on your body from chronic illness, amongst other things. There was probably a point in time where my cortisol was constantly high from being in an anxiety type state all of the time, but apparently that wore down on my body and now I don't produce a lot of cortisol at all. I am trying some things to correct this. But anyway, I don't think that all or most people with dysautonomia have high cortisol. I think it runs the gamut. The relationship is interesting though, as low cortisol can cause some dysautonomia related symptoms, especially orthostatic intolerance. Not sure about high cortisol but I bet there are related symptoms there too. And Looneymom, I'm not sure what kind of sleep issues you are referring to but I have trouble getting a restful sleep, its not insomnia but I just can't fall into a deep sleep which leaves me tired in the mornings. I also struggle with chronic headaches as of late.

I wouldn't say that I need to push myself as in "I need to run 8 miles every single day and do hours of cardio", but in the sense that I push myself to work out when I don't feel like it yes, I find that immensely helpful. For example, I have had an ongoing tension/TMJ headache for over a week now. Yesterday I finally decided, I have got to work out, even though I feel like crud. I went and did 25 minutes on the recumbent bike and some strength training, and I felt a lot better. This is how things generally work for me, it might not be the same for everyone but normally its a huge ordeal to actually get me to work out and I do have to force myself. But I always end up benefitting from it. Now, if you get VERY sick afterward you may be pushing yourself too far. But a lot of times I do feel a little worse before I feel better. I think the deconditioning factor is way worse, not that its what causes POTS but I feel it can complicate it a lot. And as Spinner says, hydrating like crazy is going to be vital too, usually when I feel significantly ill after working out I will notice I wasn't hydrating enough. For me I can see a direct correlation. But you just have to pay attention to your body.

Absolutely the fact that this affects all parts of our bodies, that's the part I have the most trouble with explaining to people. Usually they're like "but I thought you just had a heart problem???". I like to really emphasize that this illness affects my whole entire body in various ways. You could probably give a brief and clear explaination of what the autonomic nerve system actually is, I feel that helps a lot with explaining to people.

My periods are all over the place. They have always been miserable and heavy, but lately they have been very short but still miserable and heavy. I also have a longer cycle than average so I almost always have about 40-45 days between periods. My doctor says that's fine but it does make it harder to keep track of. I think that my level of activity affects my cycle a lot, the shorter periods line right up with when I started exercising. And Joann, I also have gray hair coming in and I'm only 20! My hair thinned when I was iron deficient but it all has grown back since I have been correcting that. I get iron deficiency during and after my periods but my levels are normal other times.

For me, my heart rate just continuously increased as I stood for the TTT. It wasn't like a sudden drastic spike, it just kept going up and up and up. My blood pressure didn't fluctuate wildly though, it just dropped. Anyway, my doctor who specializes in POTS just said that if you have an increase of over 30 that is generally considered POTS. I don't think "skyrocketing" is part of the criteria. One thing I've noticed is a lot of doctors who aren't specialists tend to try to use other terminology other than "POTS" to describe the problem, for example "its not POTS its orthostatic intolerance with tachycardia" (no joke I was told that once). So, your doctor could just be doing that.

I always think I'm getting better but lately new symptoms keep popping up, which is upsetting to me. I try to just keep plugging on regardless of it. I don't like the fact that there is so little information from the medical community as far as what to expect from this illness, as someone who constantly worried about the future that's not a great thing for me.

Yes, I think that high-stress situations and environments are just too much for my body and its a huge trigger for my symptoms to flare. I really don't like to consider myself "sensitive" or "delicate" but I have started trying to accept that I do have to be careful to take care of myself. Modifying my lifestyle a bit so I'm not in very high-stress environments has made a difference for me. Lately I've been quite busy and I've also been flaring up pretty badly.

Thank you for the info! I'm wondering if its technically even considered asthma since I didn't require any kind of medication or inhaler to get better, just some fresh air. Guess I'll have to ask my doctor all that. My brother did get a diagnosis but then they thought it could be a vocal chord dysfunction, and his doesn't get triggered by smoke like what happened to me. I just worry that it could be something totally different, but I suppose I'll find out.

also I should note, I do not take a beta blocker, I know sometimes they can cause asthma to appear

When I had part of my thyroid removed I started waking up early, I was undiagnosed at the time and the doctor was just astounded because I'm very small and they gave me a pretty hefty dose. Its so strange because I am so so sensitive to other meds and take "baby doses" but it seems sedation isn't very effective on me, go figure.

So today I was at a family gathering and my cousin was smoking about 3 feet away from me, with the smoke blowing in my direction. Suddenly, I couldn't inhale without coughing (it was sort of like a "tickle" cough but very bothersome), felt like I couldn't get air into my lungs well enough and sort of felt a weird feeling in my throat like it was swollen. I had to physically leave and go breathe some fresh air to make it stop. I have never had any real breathing problems before, and I have definitely never had that reaction to smoke. As little as a month ago I had people smoking in my car with the windows nearly closed and didn't have any issues. Now suddenly it seems like smoke triggers this horrible breathing reaction. All I know is my brother has had asthma since he was a kid and it seemed very similar. So now I'm pretty terrified, does anyone else experience this? Especially a sudden onset where it didn't used to happen.

Jamie that was a really good explaination, thank you! That honestly explains a lot about what's going on. It seems like stopping my periods would be ideal honestly but I don't tolerate hormonal BC pills well so I'm going to ask about getting fluids. I have a blood volume test coming up so if that shows it to be as low as I think it is, hopefully that'll help make the IV fluids thing happen.