StayAtHomeMom

My pulmonogist had me try dramamine to help my dizzies. 1/2 a tablet. It seemed to help me. Then again it may not work for you and I wasn't on any other meds at the time. Ask your doc if it is safe for you to try. Made me a little tired but it helped so that during my few week spells when I get dizzy over silly things like noise I could function. The swaying I got no help on except stay near walls. Hope you feel better soon. Try to stay relaxed.

Kim: I have had an echo, 2 chest xrays, chest ct with contrast, six minute walk, full pfts, albuterol breathing test, the breathing test that checks for inflmmation. They have not done the pulmonary pressure but considering everything was normal I suspect that is why they didn't. I noticed my dlco is a little low but the doc says it is normal. Also had EKGband 24 hour holter monitor. The diagnosis that I have is POTS (not looked for underlying cause yet), kidney stone in rt kidney, fatty liver, mild chronic superficial gastritis, low vitamin D, polymorphic light eruption, rosacea, acne (finally have a handle on because of accutane). The POTS diagnosis I found and was confirmed in Janurary with a tilt table. Did they 24 hour urine test and it was negative for hyperPOTS. Bladerunner: it does feel worse on the propranolol I think but it could be environmental because I haven't managed to be on the reccomended dose more than 2 weeks. My thing is the breathing problem is always there just varies with intensity, anyone else have that? Or is it always in waves?

I know shortness of breath can be a symptom of POTS. My question is, is it chronic and constant? I have felt the need to take a deep breath every few minutes for going on 2 years. When laying down it is easier to attain, and when standing the sensation that is screaming to take a deep breath will get worse and attaing it is almost impossible. The intensity varies based on position, day, and possibly temperature. This breathing issue was the reason for me to seek medical care in July 2015. It started after a short run of less than a mile. It is almost like the bottom third of my lungs are not working during regular breathing so I have to inhale deeply to get it to expand and make me feel better. My pulmonolgist does not believe it is my lungs, ENT does not believe it is my sinuses, and my Chiro is flummoxed.... well most of my docs are flummoxed. I have been on propranolol and it lowers my average heart rate but it doesn't seem to help any of my symptoms. Some symptoms feel worse while on it. And my breathing feels awful like it is half my lungs instead of a third. Every medicine I have taken since this started has not made my breathing issue better. They even tried xanax and another anti-anxiety, it didn't help my breathing at all. The best the xanax did was keep me from hyperventilating due to fighting to get a deep breath. I am sorry this is long and maybe confusing. My brain is mostly shutdown due to a POTS flare up these last few days. I am hoping maybe someone may have some insights.

I was officially diagnosed this past January. It is amazing when you think back how long you may have had it and had no idea. I had to have my PCP explain what palpitations where. I assumed it was when your heart skipped a beat only (doesn't happen often but moreso lately). I was surprised when she explained it because I thought everyone felt it as often as I did. I am still trying to get a specific answer to a cause so I can begin to feel better. I refuse to be a guinea pig anymore and won't take meds unless they can prove I have what they think I do. Good luck and welcome to this forum. So much information and support on here.

It happened to me in the doctors office, not on my tilt table. My tilt table showed I was over 130 for almost all of the 45 minute test. In my doctors office they did a bad poor man's tilt table and it showed nothing. I have seen some people say it is a common occurence. I would give him some raw data from home and after a while try a retest.

Well good luck on your testing and hopefully they can find something else. I seen something about beta blockers sometimes paired with alpha blockers (or something like that). Maybe just tweaking the type of med with help.

See I don't have asthma either. Did a full work up with an amazing pulmonogist and he said there was absolutely nothing wrong with my lungs. I have the issue where I feel "tigh-laced" and I can't get a deep breath. After taking my propranolol for a few weeks I noticed it getting worse, and I was fighting more to get the deep breath. The pharmacist asked if I had asthma when I filled it, because it can cause an asthma attack. Kinda makes me wonder if the breathing issue isn't something similar to asthma and maybe that is why it freaks. How did they figure out you have hyperpots, and what is making them test you for MCAS?

Just wanted to say welcome, and congrats on a diagnosis. I got lucky of just a year and a half before I got my diagnosis. A lot of people on here took a lot longer. Try not to be nervous about your testing, the more data they collect the better answer they can give. And I believe an answer, any answer (as long as it is correct), is better than not knowing. Good luck on your tests.

I noticed my propanol was causing my breathing issues to worsen, are your breathing issues due to something besides POTS? I went off of it for a while and would only take as needed but I recently decided to try again thinking maybe before I was triggering my breathing symptoms to worsen because it had got so hot out.

Normal person I believe is 200-age for max excercise hr. I have never fainted during sex. Sensations change daily, sometimes it is good, sometimes bad. Orgasm for me has been out of reach but it can still be enjoyable. Best thing you could do is ask your doctor if it is safe for you do to so, and if it comes up make sure your partner understands your condition, and be flexible (lol I know bad pun for the EDS, I just couldn't help myself). Sometimes weird positions can be the best for symptom management. Good luck!

I have noticed with myself I always feel crappier when my sleep is bad. I am not sure what my heart rate does but my symptoms are significantly worse. It helps if you can establish a regular sleep pattern. Personally I use melatonin to help on the days I can't sleep. I also try to allow myself 10 hours a night minimum.

I thought I was crazy! I will have to look more into this. About 6 months ago I noticed my skin doing it. If I scratched my arm it would turn white instead of red and I thought it was the weirdest thing. Tried to show my dermatologist at the time but it wouldn't do it for her. It isn't all the time for me though.

The last dentist visit I had I informed them of my condition. They put it in my chart and told me it wasn't a problem. They have different meds that wouldn't effect my heart rate. I would suggest for now to drink lots of water and relax while you hear back from the doc. If you feel the need to go to the ER. Better safe than sorry.

I personally had the problem where all the doctors were saying anxiety and/or smoking. My 1st cardiologist all but dismissed me. I have been having my POTS symptoms for almost 2 years. I ended up doing a poor man's tilt table everyday for a month and recorded my info. So when I went to my 2nd cardiologist he couldn't dismiss me or my raw data. He agreed to put me on the tilt table. I was diagnosed this past Janurary. For a while I thought what was going on with me was environmental because my 13 y.o. son was having similar symptoms. So I started doing a poor man's tilt table on him and I suspect he has POTS too. He goes next month to see a cardiologist and hopefully with the raw data I can convince them to do a tilt table on him too. Not all of his symptoms are the same as mine but a lot overlap. And when I am at my worst, he is right there with me. Don't give up hope. I have been through at least a dozen doctors for myself over the last year. Sometimes it takes a while to find the right medical team to find the answer. No matter what the answer is.

I have been noticing the same issues. My body is freaking out like my heart rate it high, but my numbers look ok. I plan on talking to my doc about too. Just figured I would let you know that you aren't the only one.

I ended up buying the garmin vivosmart hr. I got it for $100 at best buy. Best money i have ever spent. I find it to especially helpful in the shower. I have used it in the shower and even swam with it last week. The waterproof ability is awesome. That being said i am not sure of the accuracy of it when i am wet. I think it may be a little off, but i have not tested it to be sure. For anyone debating between the 2, i recommend the garmin. It is calming to be able to look down and see if i am doing too much with just a glance.

Akwardspondy: i spent some time researching the garmin. I think it is worth the little bit more money to have it waterproof. Plus i seen you can sync it to the pc with the included usb in stead of spending $25 for a dongle. Thanks for the tip on looking at garmin.

Thanks everyone for replying. I kinda wish the charge 2 was waterproof, but other than that I think I like it over anything else I looked at. Akwardspondy: when I looked at that Garmin it didn't do as much as the charge 2 such as sleep tracking. Did I miss any features about it? Amyschi: they work independently for hr, but it has to sync to a phone or pc in order to track long term. I have seen you can get a dongle and just hook it to you pc if it doesn't support your phone. Like my blackberry curve.

Does anyone use a fitbit charge 2 or similar device to keep on eye on you heart rate fluctuations? Does it help or make you more anxious when you can see you heart rate at a glance? I am considering getting one. I know it isn't prefectly reliable but could give a ballpark.

Thanks. I love the wealth of information, and the help and patience of members.

Welcome. I have recently been diagnosed with POTS. I can only confirm my heart rate jumping since november but looking back i wonder if it started much earlier. I just turned 31 and i find it frustrating too. I have to have my 14 year old son help me just to pick up groceries. I hope you find your answers.

Kalamazoo: that is the next thing i want them to check since i have allergic reactions but an allergy skin test came up almost totally negative. What is the easiest way to check for MCAD?

KiminOrlando: it feels like sometimes i forget to breath but that is at night and only happens every once in a while. My breathing issue was terrifying at first but after test after test came back normal it is mostly just irritating and frustrating. It is like walking around meditating all the time to make sure my heart rate stays down and my breathing slow. I am currently trying to get my insurance compant to cover the pulse oximeter so i can check my o2 and pulse much easier. My o2 seems to be fine whenever they check though. Yogini: they haven't said it was part of my POTS, i just assumed it was considering it does get better when laying down and i can get my deep breath easier if i am laying and doing minimal activity. If my POTS isn't causing it then i am back to the drawing board because the docs have no idea.

Yogini: When I am upright, active, or standing it is worse, but it is still there while laying down. I have had it everyday all day since I went for a short run in July 2015. It is kind of a tightness in my chest that makes me feel the need to expand my lungs as much as possible by sighing or yawning every few minutes. Sometimes I can get the deep breath, most of the time I can't. If I fight with it I will end up hyperventilating and end up at the hospital. KiminOrlando: it just said negative. She didn't tell me what specifically she was looking for. Just that some autoimmunes present in the skin and I get a weird sun allergy rash every year in the spring for the last 6 years (except last year). She diagnosed it as polymorphic light eruption. After the skin biopsy and the negative ANA. But this was done in April 2015, about 2 months before I got the breathing issue. Last year I think my skin rash didn't show up because I was avoiding direct sunlight due to some meds my dermatologist had me on.

I have a copy of my results of my ANA and it seems to show negative. Personally it looks more like a result report than the actual results but it is what my dermatologist gave me. I had a skin biopsy to confirm PMLE and she did an ANA as a precaution. Not sure if it checks for all autoimmunes or just some. I have read ANAs can be unreliable. I am not sure if they checked pulmonary pressures. I know I have had 3 breathing tests and a full PFT. Plus 2 chest xrays and a chest ct with contrast. I have wondered about pulmonary hypotension but not sure how they would test. My pulmonolgist released me last month swearing my lungs were fine. He was the first doctor I had that listened to me and seems to be highly respected in his field in my area. I can only verify my POTS started this past November, but I have been having the breathing issue since July of 2015. I assumed if I got my heart rate under control my breathing issue would subside. It has only been a few days, but I did my poor man's (I have been daily since December) and it was beautifully normal, but my breathing issue was still there. It is kind of frustrating.