yogini

If you are drinking 4 liters of water plus gatorade and other liquids, that sounds like an awful lot of fluids. I think we're only supposed to drink 8-10 cups of liquid/day, or 12 at most. I think that is only 2-3 liters of liquid total. You may be drinking too much and washing out some of your electrolytes. And although thirst may be a symptom of POTS, it is usually a secondary symptom. It may be worth investigating the kidney thing further - usually POTS doesn't affect kidney function.

I think any kind of exercise can bring on POTS symptoms, and worse, there is often a delayed reaction. It makes it hard to know what our boundaries are! I know the type of exercise has made a big difference for me. There are some exercises I just can't do, and others are much easier. Squats are particularly hard on us because of the rapid positional change. Maybe your therapist could adjust the exercises so that you are sitting or lying flat.

I started taking 50mg in January and felt an increase in energy within a day or two. I do really like how it makes me feel. It's not a huge increase in energy, rather it's kind of subtle. That may be because of the low dose. It didn't otherwise help my POTS symptoms, but doesn't seem to have any negative side effecs either.

Dysautonomia does seem to run in families. Given your symptoms, it sounds like a good idea to mention this to your dr. It also might be helpful to measure your blood pressure and heart rate at home for a few days. There are all sorts of variations, but fast HR and/or low BP are usually the most common symptoms of dysautonomia.

Sorry I didn't respond. I think I missed your update b/c you added it to an old thread, which I tend to skip over. You'll probably get more replies next time if you start a new thread. I know I don't always get responses to my posts. Sometimes it's disappointing, especially when you're in a place where you need support. But as others have said, it's not personal. Ernie, you are probably one of the people on the forum that is most cared for! Glad you found a good researcher.

Tea, my reading of doctorguest's post is not that he is recommending SSRI's to anyone, but saying that it is an option of treatment for all types of POTS. In my non-medical opinion I don't think it's known exactly how SSRIs help POTS, but they are shown to help a good number of patients and I think the only way to actually know whether it would be helpful is to try. Your concerns about side effects are valid, but I think that would be true for taking any type of medication. I think it's a decision that each of us needs to make in consultation with our doctors. This is an interesting and sensitive discussion to me because I just started Paxil three weeks ago. I don't know which type of POTS I have - I never bothered to find out because I wanted to concentrate my energy on exercise, treatment, etc. I don't have anxiety or depression and am taking Paxil only for my POTS symptoms. Fingers crossed, it really seems to be helping with my BP and energy level...so no second thoughts so far

Hi Morgan, I'm so sorry you continue to be treated this way by your drs. I hope that you'll be able to find someone to give you a script for sleep meds - Ambien has been a godsend for me...and fractional dose of it occasionally is all it takes. In the meanwhile, have you tried OTC sleep meds or benedryl? I like Ambien much better, but the OTC meds might be better than nothing...

Katherine, I can totally relate to how you are feeling. Actually I think my relapses are usually related to a specific cause. But when you're doing "relatively well" for someone with POTS, a relapse is a scary reminder. It always brings me back to how I felt when I first got sick and brings back fears of getting worse. Anyway, hang in there, rest up and hopefully you'll be back to "normal" soon... -Rita

I had my booster shot last year and felt a little funny after, but it went away after day or so. You can search old posts, as I think a few others here have too. I think the tetanus booster also includes diptheria and whooping cough, which I think is on the rise. It may be worth getting immunized unless there is a risk of permanent damage. I'd think the risk would be pretty low, but it's really the dr who should be walking you through the risks. Do you have a POTS dr that you can talk to?

Thanks ladies. I didn't see the heat/sweating thing in the list of Paxil side effects, but it was mentioned in patient discussions when I Googled it...

Thanks guys. I am still zonking out for hrs at night and also in the afternoon! I also noticed that I feel HOT ad thirsty all the time and am sweating, even in my sleep. I am usually one of those people who is freezing cold all the time. Normally when this happens I get scared b/c this is a sign of being tachy, but my HR seems to be fine at these times... Does anyone else get hot and sweaty due to an SSRI? Anyway, none of these side effects are that big of a deal - I'll be sticking with the Paxil and may even increase it in another week or two. I think I even noticed a couple times that my HR is a little slower...if so, that's good news.

Though they didn'r respond to your question, there are people here with all different levels of POTS and different combinations of symptoms too. If you're not sure about your diagnosis, a good way to tell is to just take your HR and BP at regular times and especially when you're having episodes. If you write down this info for a week or two, if you do have POTS the numbers will at least sometimes be out of whack...unless you're taking meds to control them, though usually the meds aren't perfect.

Florinef does tend to cause low potassium - you can search through old posts to read about this. I know that you don't want to mess around with your meds which have been working, but thought I'd share that I had a tons of trouble reducing florinef until I went super slowly. I was able to wean off of it totally by going 1/4 pill/month, without any side effects. Just thought I'd mention this, in case you decide to try...

Hi, Welcome to the forum. I just skimmed through your post and was wondering whether you've been tested for celiac disease and/or lactose intolerance? I've bad gas sometimes and these tests were suggested to me by others on the forum. You can search past posts...these conditions seem to be pretty common among POTS patients. Some here even test negative but feel much better after cutting out gluten and lactose anyway...just thought I'd mention. Feel better soon! -Rita

I think it's only available in Europe, not in the US.

Hi everyone, I've been on 5mg Paxil for about a week now, which is 1/2 pill of the lowest dose out there. The first day I felt fine. The next two days I started feeling tired and slept all the way til noon w/o realizng it. I'm still fatigued, but I've only had a minor increase in POTS symptoms - but it is really not even as bad as I feel around my period. So things so far are going much better than I expected. It's probably b/c I started really slowly, thanks to the good advice here. Since small doses seem to work for me, I actually think I might wait a couple more weeks before increasing to 10 mg. Who knows, maybe 5mg wll even be enough. Because of my own experiences w/meds and reading other peoples' posts, I was really reluctant to try an SSRI. It was something that my docs recommended 4 years ago, but I was too scared. Just wanted to share my experience for those of you considering an SSRI that all in all it has been pretty bearable....now we'll just have to see whether it helps with my symptoms!!!!

Talk to your doc- maybe it makes sense to stop the med and restart it at a better time in your schedule. Many of us feel an increase in symptoms when trying a new med - often this calms down after a few days or weeks. You'll see a lot of posts on this as it relates to some of the more common POTS meds, such as birth control or SSRIs, but I have found it to be true in general. I think we have to take meds for longer than regular people to figure out whether they're working or hurting...

Hi Nina, I got nosebleeds every week or two while I was on florinef. I don't have EDS, so I'm pretty sure it was related to florinef, since I haven't had any bleeds since I stopped (3 years ago). I think someone posted before about florinef causing small blood vessels to rupture. I would check with your dr when you get home - to make sure it's the right med and dosage for you. Enjoy the rest of your time in Mexico. I was in Cozumel last week and we had two really cold days - 75 degrees - good for POTS, but too cold for the beach... -Rita

I dont know anything about Coreg, but I think there are mixed reviews for all beta blockers on here...in fact that's probably true for all POTS meds. BBs actually seem to work for more people than many of the other meds. They regulate heart rate, but in doing that they often help with many of the other POTS symptoms. In the best case, the first med you take will work right away...but you often have to play around with a few things before you find something that works. The good thing with a BB is that if it doesn't work, you should know shortly - within a few days. There are many other drugs that take much longer to settle in, weeks even. If you decide to try it, you can also start slow, so it will be easy to taper off if it doesn't work. Good luck!

Funny, I was just on a flight and overheard the flight attendants saying that if they gave oxygen to everyone who asked, they'd have to carry around 100 tanks of oxygen. They were probably thinking about the diabetic woman who recently died on board a plane bc there was no oxygen. Just what we need our flight attendants to think! I do think. from reading a lot of posts about flying, that most people seem to survive better than expected. As long as your dr is OK with it, it's at least worth a try so you know one way or the other. It sure isn't fun, but I personally couldn't imagine taking a car trip for more than a couple of hrs. And just think of all the places you can't get to with a car...I am writing from Mexico!

Mayo did give me a report with all of my test results. It is in the closet somewhere, so I have to look for it! I doubt I had the catecholamine test b/c I just remember having one regular blood dr...but I do want to double check... I'd rather not call the dr since this isn't urgent and I already asked a zillion questions at my last appointment. I'll ask for a copy of the report and post back if I find anything interesting!

Rachel, I think you're right - I think I'm just being tested for a random bunch of things. As for the catecholamine test, I need to look over my paperwork for Mayo. For some reason I don't think I had it there. If I haven't had it, I don't think I will try to get it at this point. My POTS diagnosis is pretty clear, and while I'd love to have more info, I don't think it would be worth traveling to do it..don't think it would have much impact on my treatment anyway...

I think Flop had a really good post on prognosis recently - I tried to find it for you but couldn't. In any case, according to everything I've read, and what Mayo told me, the prognosis post-virus is very good and same thing for post-pregnancy. I know things can be incredibly scary when you first get your diagnosis. No one can tell you for sure how things will turn out, but I think most people do improve or at least find some stable ground and are able to be fairly active. I think people usually don't get worse unless they've had this from an early age and/or have other conditions which complicate things. It may take some time for you to find a good dr, get the right meds, get into an exercise routine, figure out your limitations, etc...not to scare you, but, to be perfectly honest, that may take a few months (or longer). But after you make it through that initial rough period, things do get better, I promise! Hang in there!

Thanks, Sophia. It wasn't the catecholamine test b/c all 5 vials were taken at once...though I wouldn't mind having that test. Did you decide to stick with the gluten free diet, by the way? I couldn't manage through the holidays, but I may go back to it at some time...

I just went to have blood drawn following a dr's appointment earler this week. I've had lots of blood tests since my diagnosis and usually they take 1 or 2 vials, including when I went to Mayo. Well, this time they took 5 whole vials!! Has anyone ever had this much blood taken? I was a little freaked out b/c I once almost fainted as a teenager after having blood drawn, but so far I'm feeling OK...fingers crossed... The dr said that he had been reading up on POTS and wanted to test for some things, and I'm wondering what could he be testing for? I should've asked. I wish I still had the order sheet from the dr, but turned it into the lab. I'm sure I will get the results eventually, but just thought I'd ask. As long as I'm feeling OK, I'm not complaining about the test and am happy to have any more info - even tho I am sure all the tests will come back "normal", as usual...