margiebee

A blood volume test is set to be my next test so far actually. Sympomatically I apparently appear to have low blood volume, and salt loading does help me significantly. I also have pretty significant blood pooling and that is part of it. But my doctor also has said that most POTS patients are hypovolemic to some degree and that there is probably still some other cause behind it.

Reducing fluids at meals is interesting, I actually always feel worse when I drink while eating! Thank you!

I have not had specific testing for it as I do not experience these symptoms very often. I do have some GI discomfort and bowel issues but its more like IBS type symptoms, I did have a colonoscopy to check for things

I was tried on this by my primary care physician while he was suspecting that I had POTS, for me it was absolutely horrible. It lowered my blood pressure to an extreme degree, I was so fatigued I literally could not get out of bed or walk. Could hardly even open my eyes because when I did the room around me looked like it was spinning but in slow motion. My brain felt like it was asleep while my body was awake. Now the fact that I was also on a benzo at the time could've worsened the sedating side effects as my doctor said, but just be forewarned that it can be a very VERY sedating drug and although that may lower heart rates it also can make you extremely uncomfortable if you're like me. Good news is after stopping the side effects passed much more quickly than I thought they would, within a day or two. So if you react badly it probably won't be a huge setback just a couple day thing.

It sounds to me like some of us are sensitive to estrogen or other hormones and some find improvement with them, that is very interesting to me. I have always suspected that my hormones are slightly imbalanced, as I have all sorts of period related issues but have never had them tested. My gynecologist has told me that it seems like the less estrogen in a pill the better in my case, she couldn't explain why this is though. I do know that prior to my period my blood pressure also is almost always at its absolute lowest, usually 85/50

futurehope, are benzos known to help with mast cell issues? Myself and my doctor suspect a possible mast cell problem and I improved significantly while on benzos, but I am discontinuing before I become too tolerant to them. Claritin also helps my symptoms slightly when I take it for allergies.

I am currently tapering off of clorazepate but I had dysautonomic symptoms way before I even took my first benzo (have had symptoms for around 8 years, have been on clorazepate for about 1 year). It was actually prescribed to manage my symptoms of POTS and dysautonomia. While tapering I have had some ramping up of my symptoms that already existed previously, but none of the horrifying symptoms I have read about on benzo forums, at least yet. I have cut my dosage in half, but I will admit I was taking a low dosage to begin with (started at 7.5 mg clorazepate daily, equivalent to 0.25 mg xanax or klonopin). My doctor says that if any of the serious prolonged effects were going to hit me, they would've by the halfway mark. I suppose I am lucky. But as far as POTS or dysautonomia being caused by withdrawals, I think that orthostatic intolerance is definitely a withdrawal symptom. When I saw a specialist and tested positive for POTS he made sure the verify that my symptoms started before I even touched a benzo. I am not sure that food intolerances could be caused by withdrawal, and I am not sure that specific food intolerances fall under dysautonomia exactly either, although perhaps it could be a mast cell issue? Have you tried taking your heart rate or blood pressure during one of these episodes? I believe that normally people with POTS or dysautonomia will still have some kind of abnormalities in blood pressure and heart rate.

The week prior to my period is actually the worst for me, I am very sensitive to hormones. All hormonal birth control also ramps up my symptoms except for the very low dose Loestrin. Immediately after my period ends is when I feel the best usually.

I take Align probiotics daily for my GI issues (bowel irregularity and pain), and they work very well for me. I also eat Stoneyfield yogurt every day, I tolerate it better than the Dannon kind that's loaded with icky ingredients. If I am feeling especially bad I switch to Amande almond yogurt, it has the cultures but no ingredients that trigger me at all (no dairy or soy)

I think that is considered a moderately high resting heart rate, not tachy but enough that most people who aren't accustomed to it would notice it. That sounds more like what I have been told is considered "palpitations"

I know how relieving it is to finally get an answer, I'm happy for you! I think if you can manage without taking meds then that's even better, exercise has been helping me quite a bit lately, especially working on the leg muscles

Thank you all for your suggestions! I actually figured out that I think the reason I was nauseous was because I was dehydrated to begin with, of course go figure. Snow cone maker is definitely a good idea, I was basically crushing up ice by hand and mixing it with gatorade which seemed to do the trick, along with some of my trusty pepto bismol.

Nausea is a symptom that doesn't hit me very often, but for whatever reason whether it be a stomach bug or POTS issue, I have been experience pretty horrible nausea today. Hasn't escalated to vomiting but I am just feeling extremely woozy and sick to my stomach. I worry that I may be dehydrated, but as soon as I drink any substantial amount of water it gets worse. I have tried using my usual treatment of peppermint, but it isn't working very well. Does anyone have any suggestions on how to hold down liquids when feeling like this, or even better what you do to treat the nausea?

I have been told that is considered "presyncope" and I get it pretty frequently, although less frequently now. It was hard to identify at first because rarely does it lead to actual syncope, but I guess its just sort of like an "aura" that happens with migraines. Definitely my scariest symptom though, its a hard one to just fight through

I work in retail so I am on my feet quite a bit, and it is difficult for me but fortunately I can actually manage it with compression stockings, although sometimes I do wonder if I am overexerting myself. But I have noticed that when trying to explain my condition to my managers they just kind of go "oh, interesting" like they don't believe me, which is kind of frustrating for me. I'm just a part time sales associate so I guess I'm just sort of inconsequential to them, so I am hoping as I get higher level jobs I will get more respect to my limitations and requests for certain hours. I agree with Spinner, many people act like they care or claim to understand but the bottom line is most jobs in the corporate world don't care much if you can't do what they want all of the time =/

My temperature swings around quite a bit, and when I am symptomatic it is generally in the 99.2-99.8 range. When I am feeling well it runs pretty low, around 97.3-97.5. I suppose it makes sense as some kind of autonomic issue

My symptoms definitely became much worse after I hit puberty, but they were definitely there for most of my life in some form. When I was a kid (around ages 5 to 10) I had pretty bad GI issues and would get severely constipated and nothing would help. I also always noticed a very strong intolerance to heat and exercise. I always loved to run around but I would always get dizzy and have to sit down, I thought it was normal because I didn't know any better. Also have had severe allergies to various things my whole life. Started with a milk allergy as a baby. We feel that whatever form of POTS I have it is genetic because my brother has it and my father had symptoms when he was a young adult. Both my brother and I have shown symptoms since we were young children. So in my experience, I think if its genetic maybe it shows up sooner. I hope you can get her feeling better soon though!

From what I understand, coming off of a benzodiazepine can cause general tachycardia (not orthostatic) even in people without dysautonomia or POTS, so I would say that is definitely a possibility.

My heart rate can sometimes be high when I'm sitting, especially as lejones1 said. If I have to sit in one position with my feet below me without moving I definitely experience symptoms. Generally I always sit cross legged, even in chairs. This seems to help. Of course I don't know if your son could sit in this position in his wheelchair, but that could be a possible reason why its happening.

As far as being embarassed, I felt the same way. I don't have any nausea or vomiting, only bowel issues, which sounds like a major TMI for most people but believe me most gastroenterologists talk about that stuff like its the weather which is really comforting. Expect to be asked many questions along those lines though! I can't speak for the dysautonomia part because I saw my GI doc before my POTS diagnosis, but when he was updated on my diagnosis he seemed to think it made perfect sense. But the familiarity with it is completely random in my opinion and I'd expect to explain at least initially what dysautonomia does to the body.

I was vegan for a period of time, but due to being pretty badly intolerant to soy and not being able to tolerate too much fiber (i.e. too many beans are a no no for me) I had to stop. I do really wish I could manage it as I think it could help my health in the long run.

People who take magnesium, what dosage do you take? I feel like this may help me but I've been very worried about taking too much.

I have some of the more pronounced increases in heart rate upon standing (75 to 150 is pretty common for me), but it absolutely does not happen every time I stand. I guess I could say it happens most times, but there are definitely times when I stand or change position that causes no symptoms or tachycardia for me. It is totally random. My doctor told me that this is normal for POTS. Depends on all kinds of factors. And for your second question, I can't say for sure because after standing for a while I generally feel like my body is adjusting and evening out but my tilt table test showed that after 45 minutes my HR was still increasing. So I don't know if you have tried to measure this but I know I feel one way but my heart feels differently. I am sure my HR plateaus eventually but I am not sure at what point.

My hands are always cold, people have noticed that my whole life, my feet tend to vary more based on whether I'm standing or sitting and how active I am. When I exercise my feet get burning hot and turn bright red/almost purple. Similarly, my brother (who we suspect has POTS) gets severely red/purple cold hands when he runs, and the same but hot when he plays his drum set.

khaarina I had a similar situation! Before I started seeing a cardiologist who specializes in POTS, I saw just a run of the mill cardiologist. He basically did an echo, tested my cortisol, and told me that I had anxiety and there's nothing else he could do for me. But when I got my TTT done, my new cardiologist brought it to my attention that the old one had written "possibly POTS" on my record. He asked me why I didn't have the TTT done after had seen that doctor, and I said he didn't even mention it to me! I figure the first doctor just didn't even know what to do about it, since when I mentioned POTS in one of my appointments he said "that's an extremely rare illness" (yeah right) and "it would've shown up on your echo" (whaaaat?)