margiebee

I'm actually having horrible vertigo as well today. It seems that the worse my allergies get the worse it gets, my sinuses are very clogged as well so I figure maybe that's part of it.

I would say that probably my worst point ever was about a year ago, I was actually passing out which normally doesn't happen to me. Since then I have improved quite a bit as far as symptoms and my functioning, it seems to have been both a random improvement that my exercise routine has contributed to. My BP has also started going up instead of down, my POTS doctor said that's still just a dysautonomia thing but my HR increase has improved dramatically, from an increase of around 70 to around 20-30 upon standing.

But even before I was diagnosed I always noticed I'd have about a month where I'd be almost completely fine, and then a flare. And then I'd be fine again. For me it doesn't really have a "progression" type pattern its just up and down constantly. Now that I'm getting treatment hopefully it'll be more up than down but my doctor said this will pretty much be how it goes, he said it shouldn't be progressive at this point as I've had POTS for almost 10 years without any serious progression.

Or vice versa? I was trying to find any similar topics to this but nothing came up.

I have on and off low hematocrit tests that point to anemia. Basically, I become anemic during and after menstruation, something that I have tried to address with other doctors to no avail. I try to supplement with iron during those times but I'm careful not to take large doses because it upsets my stomach and I know too much iron can be bad for you. Regardless of if I take the iron or not, my hematocrit levels do eventually return to normal. But during the times when it is low I experience a worsening of symptoms, as well as new symptoms most notably horrible headaches that last for days. I personally feel that this issue may be contributing to the hypovolemia I experience, especially because iron supplements alone aren't really helping much.

Basically I am wondering if anyone else has dealt with this, and what you have done. I think that IV saline would probably be helpful just once a month along with the iron supplements but I'm not sure any of my doctors will go along with that.

I'm in the same boat, my symptoms are mild at this point, I am able to live a pretty normal life with slight accomidations. I have actually made some improvements and there were times pre-diagnosis when I was much worse off. But I keep having new symptoms pop up, like headaches and nausea. I have been told that its usually not so much a progression but a pattern of improvement and then flares and then improvement again.

I have had "trivial" abnormalities on EKGs show up, I think I actually had this exact one once. I called my doctor in a panic when I got the paper in the mail with the results. He explained to me that he didn't bring it up because its a trivial thing, translation yes its "abnormal" but its really not consequential and doesn't mean anything else, at least in my case. He compared it to people's heights, people are different sizes but it doesn't mean they're all sick. Anyway, it certainly wouldn't hurt to bring it up but my guess is there's a reason your doc didn't mention it and chances are that reason is it is actually inconsequential.

I am someone who thought for sure I was not going to be able to improve on exercise or even do exercise at all, but I have recently finally decided to take that step and I have to say, if you can manage to get started with it you could possibly see some serious improvements as I have.

I totally understand what you're saying about having an active lifestyle, but I think the key is to be doing the right sort of exercise. I always thought because I walk lots of places I was technically being "active, but my doctor explained that exercising for POTS is different. I do 15-20 minutes of using a recumbent bike every other day, and strength training every day. I really like using the weight machines because I can be seated and its not too much cardio for me but putting on muscle, especially in my legs, has been a huge help. This is more or less the only change I have made and I have experienced drastic improvements so far. Of course its not the same for everyone and I do have ups and downs but overall it has been a game changer. I know you might not think its right for you but I just wanted to give the perspective of someone who went from zero exercise to a great improvement with it.

If you don't think you are ready for that, I also have had success taking magnesium for my muscle aches and twitches, although you have to be careful not to take too much

I think that over time since I was not diagnosed for a very long time after my symptoms started, I have actually started to adjust to the symptoms I get when standing. Like they are still there and have progressed to a degree but I started to tolerate them because everyone kept saying there was nothing wrong with me.

That said, I very rarely experience syncope upon standing (maybe 3 times in my life), but I do experience lightheadedness and dizzyness, I have more trouble thinking when I am standing up, and I do sometimes get "pre-syncope" symptoms, the main one i get is shaking very badly. I also get an upset stomach when I have been standing for a while.

I have always had problems with heat for as long as I can remember, I just get horribly uncomfortable. I don't sweat that much at all, but I do have the same issues a couple others mention where my veins swell particularly on my hands and feet and I get very blotchy. The veins are very visible and uncomfortable and this is really my main symptom where I will have people ask me "what's wrong with you?" because its just so awful looking. I also get extremely dizzy and faint. I would say my limit is pretty much anything over 78 degrees makes me very uncomfortable.

The only SSRI I even tolerated slightly was Prozac. And that was years ago, when I was in much better shape POTS-wise. Everything I have tried since has given me an insanely bad hyper-POTS like episode that lasts until I can get off of the medication. My heart rate shoots up to 200, I have to use the restroom non-stop, I get flushing (which I never usually get). I also thought this sounded a lot like serotonin syndrome so I have always gotten really freaked out and discontinued. The side effects may pass, but for me they were just too awful and debilitating to put up with for a month or more just to get slight relief.

I currently take a benzo drug (am discontinuing to avoid severe dependence), and that honestly helps me a ton. Lowers my HR without lowering my blood pressure at all. It seems people who do poorly on SSRI's do well on benzos, but I would not recommend them for long term daily use because weening off is at the very least annoying.

Thank you! I think I had pamphlets on all of them from the Cleveland Clinic (that's where I go) but I lost all of them, of course. During the blood volume test were the blood draws to test hormones and stuff like that? I thought I had remembered that being mentioned from a previous appointment I had but I can't recall, I am really antsy to get those checked out. My doctor does not want to put me on any new medications before I get those tests done because I am very very sensitive and I am (somewhat) successful with lifestyle changes, as this post sort of illustrates.

My POTS doctor claimed that Smart Water is useless as far as liquid to electrolyte balance, apparently it does not have very much electrolytes compared to liquid content. But I have seen some electrolyte drink recipes floating around here that could help with the citric acid problem, I also have used Nuun electrolyte tabs in my drinks sometimes, they are flavored and are pretty good tasting, I don't think they are very acidic either. In general I try to make sure most of my beverages have electrolytes in them, I am tiny so I can only drink so much in the day and I want to make sure I have a good balance. That system works pretty well for me.

HyperPOTS, random question but were your catecholamines taken during your blood volume test? I suspect mine are way high which is also why I think clonidine would work, and my next test is the blood volume test. I thought I remembered them saying they draw blood to test NE and such during that test but I could be mixing things up.

Its actually pretty funny because today I feel pretty bad again, not sure if the tachycardia has returned because I haven't gotten my home HR monitor yet but I'm almost positive my blood pressure dropped back down, I get this miserable feeling in my head like a headache when its low and I can always tell. I am beginning to notice a pattern of dehydration when I get worse vs. better, unfortunately it is SO easy for me to get dehydrated. Like, literally if I drink a half glass less of water in a day I become very dehydrated. Go figure haha

I have been wondering about clonidine as well, it sounds like a miracle med for my symptoms so there has got to be a catch.

Ah I suppose its good to hear that other people have had this, I just hope it sticks around as long as possible. My doctor seemed really enthusiastic about my exercise routine and thinks that is a huge part of it so hopefully its not a fluke Its so funny that I am literally not used to getting "better"

I almost always have less than 30 points between the two numbers, but this has been cleared by a doctor in my case so if its new you probably should be seen. I don't know how serious this could be in other people because I always have it, but I can say there are definitely cases where it is not bad based on my own experience. But you still might want to go to the ER, listen to your body definitely

Thank you! I do feel very blessed that all my hard work, despite how little it might seem to others, has been causing pretty drastic improvements. I suppose its just the drastic nature of the improvements that is so shocking to me. But I suppose I have always had periods of time where I feel my symptoms wax and wane so it does make a little sense, I just wonder if that pattern is common with POTS

Also my doctor has scheduled me for a QSART test and hemodynamic testing. Any insight on that?

So as I've said in a couple other posts, I have been really focusing on exercise and getting healthy, and I do feel that I have been making improvements although I still have some symptoms. Today I saw my POTS doctor, and my blood pressure actually increased slightly upon standing and my heart rate increased only a small amount, no tachycardia. I know I should see this as an improvement, but it is kind of strange after being sick for so long and making only relatively minor changes in lifestyle. Has anyone else had normal test results for HR and BP during a time of improvement? I had a tilt table test 4 months ago that showed a drop in blood pressure and increase in HR of over 50 upon standing.

I used to get chronic ear infections as a child, but never had a tube or anything to treat it. I would get a lot of fluid buildup in my ears, and I think I still do when I get a lot of allergies or congestion. My doctor has also remarked that the shape inside my ear is "odd" but didn't explain that any further.

Yes.

Well, its not constantly. But I do have that sensation occasionally. I get really sweaty and clammy like I do with a fever but my temperature will be completely normal. People with POTS generally have trouble with temperature regulation as part of the whole dysautonomia thing so I figure that's why, but I suspect it also might be part of hyper-POTS which I still need to be tested for.

It is so inspiring to hear that other people on here have been able to work up to a higher tolerance! I have been starting to exercise, which was a real push for me because it was a nightmare for my body at first and I used to avoid it because it would make me feel so ill. But now I am loving it. My current routine is I do a light jog for 5 minutes, recumbent bike for 15-20 minutes and 15-20 minutes of strength training, focusing on my legs to try to help with venous pooling that I have severely. I also do some light workouts from youtube videos, and it is awesome to see when I started out only being able to do 3 minutes of it and now I can do the whole thing.

The only exercise I used to be able to tolerate was yoga (the slow non-heated kind, no cardio so of course I love it haha). I still am practicing yoga and would recommend it to anyone else with POTS, the instructors at the studio I go to understand my condition and help me find poses to help me and modify others so I don't pass out.

I get muscle soreness and twitching (fasciculations) after I work out, even though I am getting pretty good with my workouts at this point and building a lot of strength. A lot of my non-dysautonomia friends have similar issues so I try not to give it much thought. My boyfriend's brother is a personal trainer and helps me out a lot and has also told me that even "healthy" people get very sore even from slight activities sometimes, just depends on a lot of factors.

I think that consistancy does help though, at least for me. Also I get more sore when I do too much upright exercise. So that could be part of it. From what I recall you have to do Wii Sports standing up, so maybe that is a factor in it?

I feel very fortunate to have very few functional limitations compared to other dysautonomia patients, but compared to the general population I still have a lot and it is borderline impossible for people in my life to understand. I work part-time around 15 hours per week and attend school in the fall and spring, but I have to take frequent sitting breaks at work and wear my compression socks, and at school I take the bus from class to class rather than walking. I do get uncomfortable symptoms during these activities from time to time but I just make sure everyone around me is aware of my condition and its never too bad for me. The limitations for me come in more so in what I do with my free time, which is almost 90% sitting or laying doing relaxing non-strenuous activities. I don't go out very much for someone my age, which is something people have trouble understanding. If I hang out with friends they come to my house and sit with me, haha. I don't have severe problems with energy, but I do feel that I "conserve" energy in my free time so that I can still work and attend school which is very important to me. I usually tell people my functional limitations in a nutshell are I can't stand for more than an hour or so at a time, can't walk more than a half mile without sitting and can't run at all, can't be exposed to very hot temperatures and can't lift very heavy objects, all of these trigger symptoms and syncope for me. I also do think that by pushing myself for so long I have made people think that I am "fine" and worn myself a bit too thin.

Now that I have a diagnosis, my feelings of panic and anxiety are much improved. Before I knew what was going on with my body, I would be constantly on edge because new symptoms kept showing up and I had no idea what was wrong, that would make anyone anxious in my opinion. I think a lot of POTS anxiety is related to the lack of support.