yogini

Yes, mine used to turn dark purple when I first got POTS.

Mayo MN has the best POTS facilities - not sure too many people travel to AZ. You may want to talk to others who have been there.

I would go slow...ask your doctor if you can try one med first and then add the other...otherwise you will have no way of knowing which is working/.hurting you

Florinef is a complicated drug because it takes a while to build up. So high BP can sneak up on you and once you have it, it takes a while to taper off again. I can see why you are hesitant to try it again. I would go back and meet with your dr and ask why he is giving it to you again when you had high BP the last time. I think it makse sense to take less than you were taking the last time if you had high BP. Is your dr a POTS specialist? A lot of drs don't know enough about POTS - they know just enough to be dangerous. They sometimes don't put a lot of thought into what they tell us and then WE have to live with the side effects. It is important to question them (politely, of course) if something doesn't make sense. Florinef can usually be cut in half or taken every other day, but definitely make sure your dr is on board before doing this. There are also other options to bring up BP - compression hose, midodrine, mestinon. A drug like midodrine may be better than florinef, because it only lasts in your system for a few hrs, so if you get high BP, you can stop taking it right away and you will be fine shortly.

You have to balance being helpful to others and taking care of yourself. Maybe you can find a way to hlp that isn't so taxing on your health. In terms of cooking, etc., just do what you can. You'd be surprised - even moral support is nice. I know it means a lot to me having POTS, even when people don't physically do anything to help.

I think we get dehydrated overnight since we don't drink anything all night and our bodies feel better and can eat more later in the day. I too have trouble eating big breakfasts - even lunch is hard and I eat the most at dinner. (This is the opposite of what you are supposed to do to lose weight, which is annyoing.) I find that eating something low carb, (egg whites, smoked salmon, turkey bacon) or drinking a broth soup for breakfast works best. For lunch I just started getting fresh noodle soups from a deli and that has been the best lunch I have ever had (POTSwise). A big, filling lunch kills me, but I can tolerate a big or normal dinner.

I am actually pretty functional, work, go to the gym etc, but I have the same thing with bedsheets. IT wears me out. I do it in stages. like I take off the sheet sin the morning, then at some point in the afternoon, I put on the fitted sheet, then I will throw on the flat sheet later in the day. The bed is rarely made neatly, but such is life with POTS!

I think it is a side effect of beta blockers, if you are on those

I would say go easy on yourself. You may have to adjust your school or work schedule until you settle in with your POTS treatment. If you already found something to control your heart rate, that is a good sign. It sometimes takes a while for you body to get used to the meds and find a routine that works for you. Pushing too hard can just prolong your recovery. And going to school plus working is a lot, even for a normal, healthy person. Honestly, I led a crazy busy life before getting POTS and getting sick made me think about things differently. It makes you focus on taking care of yourself and being more balanced. It is an adjustment at first, but can actually be a huge relief when you get used to it. Feel better soon.

Awesome that they have dogs to help people with POTS!

I get sleep paralysis sometimes - sometimes in spurts - like a few times a month for a few months. I don't think mine is POTS or meds related, because I have only had one episode that I can remember in 8 years of POTS. But yours may be related, esp if it is several times a night. Mine has never been close to that often. Would definitely talk to your dr.

I felt dizzy for a couple hours after, but fine after that. In general vaccines haven't made me worse. I was hesitant at first, but in my book it is better than getting another condition like tetanus, flu, etc. on top of POTS!

Yes, I was like that for the past several months. I think playing with my medication was messing with my blood sugar. I added fiber back into my diet and that went away. If you need to gain weight, that is a good thing, though!

Easier to go slow and always best to work up, so you can find the lowest dose that works. You are lucky that you have such a patient doctor. Most of my doctors wanted to throw medicine at me and I had to put on the brakes.

I don't blame you for being scared of taking meds. Many of us have been through the wringer with trying meds that don't work and it is scarring. I was scared to try Paxil for 4 years and when I did it was the best med I ever tried. So sometimes it is worth overcoming your fears and going for it. You can try fractional pills - like if you cut a pill in 1/4 (As your dr first) and gradually taper up, then the side effects aren't that bad. Also, sometimes you just need to experiment with different meds in the same class I tried Lopressor at first, which was unbearable, but then atenolol (another beta blocker) did wonders for me. There are other meds that have bad side effects at first and if you wait it out, you could feel much better. If you read through old posts here about a particular med, and you can learn from other peoples' experience. Good luck

I think if I'd had POTS as a kid, I'd have tried to study medicine and dedicate my life to coming up with a cure for this. Most kids outgrow it, so I'm not sure if I feel worse for them or for adults that don't improve. Stinks either way!

Thanks. Day 4 and still surviving and feeling much better than I have in several weeks!

Massages are awesome. If you are sensitive in certain areas, you can ask the therapist to skip them. I am tight in my neck and shoulders. I think loosening up the knots helps improve my circulation. At my worst I also used to get them every two weeks. Now I don't have time b/c I work. I go to a Chinese place that honestly gives the best massages around for a very reasonable price.

I love ambien. I only take it as needed. I take 1/4 or 1/2 pill at most to help me break the cycle of insomnia. If you search on the forum, a lot of people here are on Ambien.

I cut out caffeine for about 1 1/2 yrs during POTS When I restarted it, it didn't worsen my POTS (in moderation). I drink green tea now from time to time, and it doesn't worsen my symptoms. In my case, it is either the NutraSweet and/or the carbonation that is bothering me.

Has anyone noticed their symptoms getting worse with NutraSweet/Diet Coke or other carbonated drinks (even seltzer)? I started a new job in August. They have free sodas and (embarassed to admit--no judgement please) I had gotten up to drinking 4 Diet Cokes a day. Over the last month I have been feeling awful, exhausted, etc. I wasn't sure if it was the job itself (I worked from home before), except the hours are pretty regular and it isn't too stressful. Then I realized it might be the Diet Coke (also b/c I have bad gas/burping from it - sorry for being graphic). Thursday was the last Diet Coke I had and Friday evening I started feeling miraculously a lot better. I don't know how to explain it, still having some symptoms but my head feels clearer. Given the gas, and the chemicals, I am going to cut out all carbonated beverages for a few weeks and see what happens. Since getting POTS, I have gone through periods where I cut out diet soda altogether, or drank it occasionally. Whenever I stopped Diet Soda, I replaced it with seltzer, which doesn't have the chemicals, but still has gas. It is stupid of me, because gas makes my POTS is worse. I don't remember how much it helped my symptoms. I am wondering what will happen if I stop everything. Have any of you tried this?

It is interesting if you read through the comments - how many people think they or someone they know have POTS after reading this article. It also seems that the person who wrote the article is not very knowledgeable about our condition in general. Oh well!

I am not angry. It sounds like a person without a medical background writing about her daughter's personal experience. Many of these articles seem to be about kids who get better. I think people love a story that has a happy ending. It is a start. What we need to do now is get more articles out there that talk about adults and/or people that don't get better...

I hate to say this, but she doesn't sound "that bad" compared to many. Most of the docs I have/had wouldn't bother to read anything I sent them or even respond at all or give any suggestions, or agree to any extra tests. Unfortunately with POTS, noone can guarantee that any test or treatment is going to work. I can understand, though, that you're not able to go to Mayo. POTS also falls outside the endocrinologist's area, which might be part of the problem. It is hard to find any doctor, even POTS specialists, to take charge of our condition. If this doctor's manner doesn't work for you, maybe try another doctor. I hope this isn't sounding like I'm taking the dr's side...just wanted to share my thoughts.

Thanks for sharing. It's not comprehensive or perfect, but I'm glad POTS made the NY Times. I especially wish they had mentioned that POTS is not limited to kids. These articles always seem to be one person's story. Since there is no typical POTS patient and we are all so different, the articles are never quite representative. Considering that some people are now calling it "Grinch Syndrome" even anything calling it POTS is a relief...