toomanyproblems

Personally, I can't take showers. I can't stand up that long or look up at all. I would fall or pass out. I just run cooler water for the bath than I used to. Then I just flop/slide gently over the side when I'm done and lie on the floor if I have to. I've done this for years. You just have to keep the temps right so as not to cause trouble. I keep a space heater running in the bathroom to keep the air temps right. I use one of those sprayers with a long hose attached to the shower head to rinse.

I have Addison's and the normal dose high end is 0.1 mg once a day. I take 0.05 mg daily.

Possibly this happens because certain types of stress such as high altitude will trigger cortisol secretion during the event. As it normalizes over the next day or so, you feel crappy from the withdrawal. I have Addison's so I have to increase my steroid during stressful events like flying (although I haven't flown in over a decade), then wean back down to baseline once I'm back to normal stress levels. I always go through this withdrawal worse because synthetic steroids aren't as easy to on the body changing levels as the body's natural cortisol. So this feeling worse a day or so after a stressful event has been even more evident to me for the over 30 years that I've had Addison's.

POTS is really a syndrome not one disease. It can be caused by different things. In my case it's thought to be caused by autoimmune disease. If this is the cause of your POTS, it could be that the adjuvant in the vaccine caused the reaction. An adjuvant is something added to a vaccine that helps boost the general immune response of the body so that a specific immune response, such as the one the flu vaccine is trying to illicit, can take hold easier. An adjuvant usually acts on the body more quickly than the new desired immune response such as the flu immunity response. Because it's a general immune response booster, it has the potential to get autoimmune disease stirred up, although this is not always the case because they're very sophisticated these days. Because you report feeling worse very soon after the vaccine, it could be from the adjuvant, which **might** have stirred things up for your especially delicate balance with POTS. It can cause even healthy people to feel bad. Or, as others have written, another additive might have somehow unbalanced your unique system. Personally, I haven't had a flu shot in 30 years. I've had other pretty severe autoimmune diseases for many years even before I knew I had POTS. The last time I got one I was sick for six weeks.

I'm sorry but I literally cannot tell what you're trying to say?

Not diagnosed but they want to work me up for it. I have a question though. If you have it, what will they do about it? I'm trying to transition from Gabapentin to Topamax, both seizure drugs. The Gabapentin wasn't good enough. I'm hoping the Topamax will be and I can avoid the work up.

Not cured but improved. Greatly improved. It's not reported in the literature but it sure worked for me. It helped a lot of my problems.

As I have said before on here I've passed out a lot over the years. IDK how dangerous it is for your brain but I wanted to comment that in my experience what you describe above has caused problems for me because of the leaning over. I remember last year when my daughter and her husband were home for Christmas and I leaned over in the kitchen to pick up some shoes or something, I stood up and passed out cold on the tile floor right in front of them. When I came to they were standing over me looking distressed. I said, just give me a minute. My daughter said, it's already been a few minutes. I assured her that it was okay, it happened all the time, got up eventually and went on my way. But I could tell they weren't very reassured since I live alone. But it is what it is so I deal the best I can and try to avoid hurting myself falling. I'm a PhD biochemist and have been in clinical and academic medicine my entire adult life (retired now). I've researched the blank out of this and the truth is, beyond the usual combination remedies that the docs give you to try, they really don't know much about it. So I just keep trying things and go on with my life as much as possible. For passing out, I've worked on identifying the triggers and beyond that, the cues once it starts and how to best deal with what happens. Your triggers may be specific to you, but I'm pretty sure from what you describe and since it's common, you, like me, get light headed from leaning over some times. If you have to do it, try to stay relaxed and breath. Learn how to do relaxed, deep yoga breathing. You can probably breath your way out of a lot of these near faints if your BP is high enough. Stay hydrated. Don't move too fast. I'm a quick mover with very quick reflexes. That's been a HUGE problem. I was very athletic in the past and every time I get to feeling the least bit better I start moving quickly again. If you do this, work hard to control it in trigger situations. Not sure you wanted advice but to add to the above here it is. I'm sorry you're going through this. It's really hard to handle the loss of control.

I pass out or nearly pass out all the time. Have for years. I just lie down flat and after a few minutes test the water on getting back up. Then I usually take it easy for a bit. nAfter I usually check my bp If possible, which can be all over the place, and make sure I'm hydrated. I don't bother going to the er. They might give you a bag of fluids and that might help for a while. But not long term. It's probably important to know the results of your 24 hour urine catecholamines before your dr can proceed.

Well, I flat pass out all the time so I wouldn't be a candidate.

I always thought it was crazy people's cardiologists told them that it wouldn't affect their heart. People have heart attacks pooping for heaven's sake. You know it has to stress your heart over time. However, lots of people with POTS -- a striking over representation, are or have been athletes, myself included. Maybe that helps.

Hi OP. I share your concerns. I have heart disease on one side of my family but I'm already 65 (just turned) so I've made it a while. I've had active POTS around 12 years but probably had it longer. They've checked my heart with all the tests they know to do. I have chest pains, tightness and shortness of breath sometimes every day for hours each day. I lie in bed doing deep, long, stomach calming breaths like they tell you but they don't really help. Clonidine sometimes helps tamp down my sympathetic nervous system enough to calm it. They say, call an ambulance or come to the ER if you *really* feel like you're having a heart attack but I have no idea how I'd tell the difference. I've never done either. I'd literally be in there everyday when it's happening a lot. Plus I don't think heart attack pain goes on like this for hours and hours so that's comforting afterward 😕 I have so many problems. I feel somewhat resolved to not let them run my life any more than possible. I mean, it's really hard and I have to say I do get scared and desperate much of the time when the chest pains get bad, but POTS as a disease syndrome has actually not been known very long and I guess on some level I just have to accept that they just don't know much about it. FWIW, from reports on POTS forums, it does seems as if chest pain is a very, very frequent complaint and yet it's really rare to hear of anyone actually having at heart attack. In fact I don't recall ever reading of one. The above poster has the only report of any heart problem at all that I can recall, which I think is strange because you would think it would have to stress your heart over time for heaven's sake. But it is what it is. I'll take the good news where I can get it. Good luck to you.

I can't even answer in too much detail about my situation because it would sound too scary. I've just turned 65 and live alone in a rural area. I figure I've had a mostly good life so whatever happens happens. I make sure I have my cell phone with me all the time. That's my best advice.

Hi, If you're asking me, yes, I was tested years ago for pheo but not recently. Thanks

You've posted a lot of info so maybe I missed this but if your BP is high enough you could try some clonidine. Altho most or my problems have been properly diagnosed, I have so many conditions that nobody knows what to do with me as a whole. I'm beyond caring about getting diagnosed with specific diseases anymore. I just look for treatments that can help. I have hyperadrenergic POTS and have horrible adrenaline problems. It's beyond just surges because it seems to go on and on. Even Valium doesn't help until the dose is way higher than for a person my size. I don't even feel it until around 50 mg and that's with no tolerance because I rarely take it. I describe it as trying to take down a charging bull moose. My BP does go all over the place so I have to be careful but if the diastolic is in the 80s and sometimes if I'm going to be in bed, in the high 70s, I can take it. It helps tremendously with many things but the extreme temperature intolerance is a significant one. I don't cycle through a ten minute bout of severe sweating every hour night or day with the clonidine. And if I do something it doesn't cause me to immediately become drenched in sweat. I have Addison's so I have to take steroid replacement every day. My adrenaline is high but I know my cortisol levels are not because I don't make any myself so I control that. If you have gained weight, I wonder if your cortisol levels are high. It's tricky to measure it properly because it fluctuates according to stress and there is also a normal diurnal pattern of secretion. Just wondering if that's been examined properly. Just some thoughts.

Hi, You may know that immunoglobulin isn't a medicine per se but a blood product from donation by others. Many times they want to do a loading dose that is higher than subsequent doses. This is the way I did it. I had some improvements in other conditions but not my dysautonomia symptoms until I'd completed four set of infusions. The most profound thing they helped with WRT my POTS is the dizziness. My heart rate still goes up dramatically like it did but I can walk around and drive. I can still get dizzy if I do a lot but it's 95% better. I also no longer (at least until it wears off) have bradycardia. My resting pulse was in the 50s and often my HR was in the 40s and even high 30s. This is even while my HR would jump 100 bpm when I stood up. My resting pulse went up to the low 70s after the IVIg when I noticed I wasn't as dizzy and has stayed above 65 most days. I'm not sure this is key but I'll find out since insurance will not pay for the infusions and I'm sure the good effects will wear off in time. A related problem I have is gastroparesis. I was on liquids only for two years after my diagnosis and have for years had increasing numbers of food intolerances. Now I can eat real food again and my food intolerances are much less. I can't tell you how much it has meant to me to be able to eat again even if only for a while. I've had some improvements in other autoimmune problems I have as well. I have had some pretty bad adverse reactions too but they were worth it.

I've been getting IVIg and it's helped a lot of things, including my dysautonomia. However, I'm getting what I understand to be maximum dose. I considered subQ but I think I get too much. How much in grams and volume are they looking to give you?

Hi, just curious as to how you didn't tolerate it. What happened?

Yes.

I have the same problem but don't know of any meds to prevent it. It's often from a histamine reaction so maybe you can find the triggers and not eat/drink those things.

I hate to say this but look up the symptoms for complex regional pain syndrome (CRPS/RSD). I have that along with POTS, small fiber neuropathy, gastroparesis and EDS. Altho apparently less common, CRPS is more common with these other diseases.

Gastroparesis is common with POTS. Your symptoms could be caused by that. I would go to a gastroenterologist and tell him you read they are commonly seen together if he doesn't consider it first. Mine had no idea but I ended up having it bad before it was finally diagnosed (in the hospital two weeks) even though I pointed out the possibility to him. Every warning about esophageal cancer stated here is accurate. My grandfather died from it.

I went to a world renowned geneticist for final confirmation diagnosis of EDS type III a year ago after being diagnosed with it by neurologist. I believe the EDS is the driving force for some of my other problems - POTS, gastroparesis, CRPS type 1, small fiber neuropathy, autoimmune autonomic neuropathy. All of these are common with EDS so it makes sense. It has kind of become a big glob of problems with overlapping boxes instead of distinct diseases. I don't always know which disease is causing which symptom because there is so much overlap. Hands down, the dysautonomia affects my quality of life the most profoundly since I'm about 95% bedridden at this point. I had a maximum loading dose session of IVIg with five infusions last fall which helped amazingly well for a while. I'm now fighting insurance to pay for further treatment. Other than that I feel stem cell therapy in the future is my only hope. The current popular stem cell therapy where they use fat cells will not work IMO. They will need bone marrow stem cells that are more undifferentiated to regenerate nerve damage.

And what symptoms make you seek medical help, like going to the hospital? Thanks!

I would think so.