yogini

Just POTS for me. Most people here seem to have other coconditions, but guess I am one of the lucky ones I''m content with just treating my condition and not worrying about a cause. I have improved over the years. Mine was post viral.

I live in the city so don't need a car. I didn't drive for about 1 1/2 yrs after getting pots. It took me several years before I could get comfortable getting behind the wheel by myself and a few more before I could drive long distances.

I get dizzy after exercise too. I find that my HR just doesn't calm down. Warming up and cooling down definitely helps. Sometimes I like down and put my legs up the wall for 5 min, which helps to bring the blood bck to my head. Wearing compression hose also helps, and monitoring my heart rate to make sure it isn't going too high during exercise.

Me too. It cld bar for a lot of reasons. Sitting up without support is work on your body, so it is easier on your system in general...kind of like leaning against a wall is easier than standing up on your ow. For me I don't have EDS, but I am hyperfexible in my shoulders. Ihave terrible posture and my neck and shoulders always hurt. Any support is a big help!

Many people here have had such poor/ignorant care the ER, being treated as hypochondriacs, anxious, etc. I think really it depends on the particular place and whether thy are familiar with POTS - I would guess most aren't. Definitely better asking ur dr.

Your schedule sounds very taxing. Is there s omeone that can takeover some of these tasks? Exercise, yard work, lifing, being on your feet are likely to make symptoms worse. I'd try to cut down on those - limit them to whayothers can't do - and pace yourself like the others recommend.

Interesting. My guess is that most dysautonomia patients do not have advanced peripheral neuropathy. I looked this up and it means loss of sensation and extreme pain. I have or had regular peripheral neuropathy - my ams and legs used to turn almost black when i first got POTS. That doesnt hAppen anymore, tho they do turm brightnrd sometimes. Interesting that I have swelling in just my right ankle foot. I developed this a few years ago out of the blue. I don't always wear stockings - there have been months/years when I don't wear them and then weeks where I do. Wonder if it's related. I have found compression stockings to be a huge help for my POTS sympoms. I can wear them during a flare instead of taking a beta blocker, or in addtion to taking a beta to keep up my BP. But hey don't always help people with dysautonomia. Like everything else it is trial and error.

Great story, thanks!

Thanks. I would say I started feeling better within a couple weeks and evened out at a couple of months. When i started i was also on betas and felt better once i was able to get off them. I started with 10 mg Paxil and asked to go to 20 b/c I found it was helping. I believe 20 is still a low dose. I don't consider myself recovered b/c I am dependent on meds and still have episodes/ rough periods. But am highly functional and increasingly so as time goes on... Fingers xed!

In my nonmedical opinion, 3 months is way too soon to try weaning off. For those who have dysautonomia and are prone to recovery, it can take years. It is really hard to find anything that works to treat POTS and if you have found something that is great. My advice would be to use your improvement to enjoy life, be active and exercise. If you can build up your strength, that can facilitate recovery. if SSRI is interfering with your sleep, maybe you can talk to your dr about switching the time of day, etc. Before I tried florinef, betas, midodrine and numerous natural trmts. Many things worked for me, but none as well as Paxil. I have been taking SSRIs for about 4 yrs now. Last year I went down from 10mg to 20mg. Last August, I started a full time in office job for the first time since getting POTS. I went back to 20 mg Paxil earlier this year. I feel better than I have in years and almost back to my normal self. I'd prefer not being on meds, but to me it is worth the tradeoff. If you do decide to wean off, go slow. I did 1/8 pill every month or so.

I would ask the dr why he recommends an SNRI over an SSRI, because the SSRI is for POTS as far as I know. I too was hesitant to try SSRIS. I had some luck with other treatments, but it ha been by far the best for me. I tried Paxil 4 yrs into POTS and regret I hadn't tried it sooner. No side effects here. Good luck!

What are you taking them for? I believe SSRIs have been studied for POTS and shown to be effective. SNRIs haven't, but I believe some people take them for pain and other reasons. I take Paxil for POTS and it has worked wonders

My IST is episodic too

I don't think IST is based on a number - that might be SVT. IST is just inappropriate sinus tachycardia, which means your HR is too fast from activity. It's different from POTS becase POTS is positional - gets worse in upright position. IST is not dependent on position. I have IST sometimes addition to POTS. The other thingw I am not sure when an ablation is appropriate, but it can sometimes make POTS worse. People here usually get multiple opinions before getting an ablation just to make sure.

Medical info is private and I'd be very surprised if any state required you to inform your employer UNLESS there was specific professional requirement (ie you are driving or operating heavy machinery which could put yourself or others in danger), or you wanted special treatment/protection under disability laws/plans. Employers are not supposed to discriminate unless it affects your ability to do the job without reasonable accomodation, and they shouldnt need to know unless you need accommodation or cant fo the job. Tachy, you are amazing for being able to manage for all of those years.

Mine is tilted, but not sure I feel any difference. Might not be worth falling.

I'd be inclined not to tell. If you've been there for 7 years, it hasn't affected your performance. If you had a close friendship with your boss, you'd have told him/her already. Hopefully your new treatment will help. You can always tell at a later date if needed and think about what to say. In my old job I had to say I had a chronic illness because I got ill in the middle of the job. Noone really understood POTS anyway. Since then I've had 2 other jobs, and not said anything because there was no reason.

I remember several years ago there was a woman on this form that ran marathons. Her HR was at some crazy number like 300 bpm, but she was able to do it. Not sure if this is the same person. And others here have run in races. I am like MomtoGiuliana, there is no way in heck I could do that. I can walk, but not really run. I am OK with that and THRILLED that there are others out there who can manage it. And glad POTS is getting more and more PR, even if not always described how it should be.

Yes, I agree with MomtoGiuliana. This article is very specific to outcome of patients with heart failure. It is not related to the likelihood of heart attack in low BP patients. I don't think most of Us here would have anything to worry about from this article.

Songcanary, I've also had a ton of benefit with yoga. I learned pretty quickly on that some types of exercise are much better for me than others. Cardio and exercise in the upright position exacerbate my symptoms. I also have had to ease into exercise - building in 5 min increments. I am pretty functional overall, I can work full time and even be on my feet for long periods, but it seems a lot of people with more severe POTS can tolerate cardio much better than me - run on the treadmill, etc. I can only handle a recumbent bike, and only on good days. I doubt a protocol like Dr. Levine's would work for me. It just goes to show that we all have to listen to our bodies. I am glad there is an article that shows that cardio is not the best for everyone.

I only paid $15/session or so - for me it definitely wouldn't have been worth $100.

Yes, I got a Groupon and went to 6 sessions. It was nice, relaxing and helped mildly

I am certainly not an EP and probably use imprecise terminology. Several people on this forum i believe were required to get a pacer due to asystole on the TTT. There was a 2009 discussion on this. Other than that (or in the case of an ablation, in which case i believe a pacer could be due to ablation and not dysautonomia itself) it seems unusual for someone w POTS to get a pacer. As noted on the dinet info page, it is a controversial treatment and not the first line of treatment. There are a lot of risks and only a doctor can advise on these (including, for example, whether there can be heart damage) and whether, based upon one's symptoms, it even makes sense to investgate this with an EP in the first place. There are lots of prior posts on this topic which probably articulate what I am trying to say more clearly.

Yes, scary and hard to fall asleep with this feeling/noise. The worst is when you feel the pulse in your ears.

There are similar studies showing female health care workers get IST (inappropriate sinus tachycardia). Interesting. Maybe it'll someday lead to info re cause,