yogini

Emily, I think there are multiple benefits of BCPs - shorter periods, less bleeding, milder PMS, but the biggest thing for me is the increase in blood pressure. I think estrogen causes the kidneys to retain salt thus increasing blood volume and in turn BP - also causing some people to gain weight. I think this is also the reason why regular folks not on the pill get bloated around the time of their periods. I know florinef also causes the kidneys to retain salt - think this is the primary function of florinef, but more of a side effect of estrogen. -Rita

Hi Em, I take the BCPs in the am. Would it be better to take them at night? I'm about to start a new pack tommorrow, although I'm wondering whether I should wait until next month to tinker with the time...only because right now I am playing aroud with meds, compression hose, etc. in an effort to get back on my feet. Thanks for your suggestion, especially since you're in the hole these days too. Rita

Very interesting. My symptoms often start after eating. I always assumed it was postpriandial hypotension, and I think it partially is. But I go through periods where I have terrible gas, and have noticed that my POTS symptoms are much worse during these periods. I do think there is some kind of correlation between gas/stomach issues and HR - in fact I did some internet searches a while ago and found some discussion on a cardiology forum. I slouch terribly too. Thanks for the info, I will definitely read up on this.

Hi Lauren, I am also on Orth Tri Cyclen Lo. I started it last year, and I think it helped a lot in my improvment. I made the mistake of stopping it in Nov because I think it was screwing up my sleep; it probably was, but the benefits outweigh the side effects for me anyway. I think it helped me to even out my hormones and also to retain water. I wasn't able to re-start until the end of Jan. I wish I was having as much luck as you - re-starting it has temporarily put me in an even deeper POTS hole. I started having crazy sypmtoms the day after I started taking it again. (Annoying, because I didn't really have any side effects the first time around.) I'm hanging in there because I think things will even out after another cycle or two. Glad to hear you're doing better, though! -Rita

Kit, Glad to hear that the scale is helping you. It's interesting that you are also on the low side in terms of body water. I'll bet that's problem for many of us. Rachel/Corina, The brand of the scale is Tanita. They make body fat scales - you may want to check the package because only a few of the models include a body water function. I got mine from amazon.com. I bought the cheapest one with the body water feature and it was $50. I've seen the scales at lots of other stores like BBB and Target. Hopefully they're available in Europe too! If anyone decides to get one, let me know. I'll also post back after I've used it for a little while to let you know if it's helping me. -Rita

I had hearing loss once last fall when I was at the gym. I felt funny and looked down and my HR was 190. I agree with sonotech. I think the blood went from my ears in an effort to get blood to my brain. Needless to say, I lay down very quickly as soon as I realized what was going on!

It sends a small current through your body to measure your body fat and water percentage. Hopefully it'll be helpful info in monitoring my POTS!

Hi, I just got a new body fat scale last week which includes body water. The manual says that a normal body water percentage for women is 45-60%. My body water percentage last week was 50.5% and for the past couple of days, it has been 49%. I guess I'm normal, but of course on the low end of the range. I am wondering if the loss in water is affecting how I'm feeling...or maybe I am reading too much into things? Hormones are a factor right now too, so it'll be interesting to see how things play out. Just wondering if any of you know what your body water is? -Rita

Hi Maxine, I have been having episodes like this and I know it can be scary. What I do these days is wear my HR monitor whenever I leave the house. I look down at it from time to time and if my HR is high I know to sit down and take a break, take a little extra beta blocker and/or just go home. I think it is important to try and pace yourself - even if your symptoms aren't tied to your heart rate, you know your own triggers. Hopefully this horrible winter will be over in a couple more weeks! -Rita

Yes, I've done relaxation and breathing exercises. They did seem to help me in the long run, although they never seem to work in the moment when I'm having a POTS attack. When doctors mention doing these kinds of exercises, it makes me nervous because I worry that they are confusing POTS with anxiety. Although the exercises are helpful, I don't think they are a substitute for medical treatment.

You can have POTS and haqve your HR below 100. My baseline is in the 70s. My POTS had improved last year to the point where my HR was below 105 most of the time last year on a very low dose of beta blocker...although for the past 2 months my HR has gone up again. I did have POTS symptoms even when my HR was controlled, mostly fatigue and exercise intolerance. I do think that doctors take me less seriously - they don't even seem to be worried when I have an HR of 125, although it is hard for me to function at this level.

I think "Orthostatic" means upright posture. OI means difficulty being in an upright posture. POTS means tachycardia in an upright posture, and it is a subset of OI. Other forms of OI include NCS, PAF and Shy-Drager. Most people with OI have either POTS or NCS. Some people feel strongly about distinguishing between these conditions. There are subtle differences, but I personally think of POTS and NCS as pretty much the same thing. The Dinet main page and NDRF Handbook have good explanations of all of this.

I took 0.1 and 0.2 florinef for a while, and didn't have to take any potassium supplements. I know that too much potassium is dangerous. A lot of people on the site take supplements, but I think it's better to check with your dr first and get regular bloodwork done.

Hi Tea, Thanks for checking in with us. I was wondering how your trip was going. I'm so glad that you have the opportunity to have such extensive testing and hope you find some answers. Please keep us posted when you have a moment. And stay warm...glad they have those underground tunnels for you!

Hi, I get this symptom when my POTS is acting up and find myself having to, shall we say, race to the bathroom. I don't think your body could be digesting that fast. I think it's more like an autonomic storm where your body is expelling things already in the system - I get the same sudden urges to urinate too. (Another thought is that your body could be having a reaction to what you're eating - for example if you were lactose or gluten intolerant) If you are having frequent diarrhea, this is not good, because it's dehydrating you. So it is important to get this in check. I will add that, if you have been diagnosed with POTS, I think it's much better to treat POTS as a whole, rather than worrying about and treating individual symptoms. I find when my POTS is at bay, all of the weird symptoms go away or are much milder. Are you working with a doc who is treating you?

You may not have gotten a lot of answers to this post because exercise has been discussed a lot in the past. You may want to do a search. Most docs recommend that POTS patients stay as active as possible. At the beginning, this may mean walking just a couple of extra minutes a day, doing Yaz exercises or stretching exercises. You can start gently and slowly build up over time. You try a little, and if you feel sick after, you can just back off a little.

I just wanted to add that, in most people with POTS, the heart is perfectly healthy and there is no damage to the heart structure. (This is why for many of us, all of our tests come back as negative, other than the Tilt Table Test) Although we get tachycardia and/or low BP, the cause is neurological, not heart-related - the heart is beating to fast to compensate for the fact that the body is unable to maintain blood pressure. POTS often occurs following a virus - not necessarily a heart virus - but any virus could spread and attack the nervous system. If you think you have damage to your heart, I think a cardiologist would be able to pick it up pretty quickly with basic tests.

Hi. It sounds like you're dealing with a lot. Any type of stress makes my symptoms act up. Are there things that you can take off of your plate to ease your burden through graduation? I also agree with Mack's Mom that getting rid of stress can be just as effective, if not more, than tinkering with meds.

For me it really varies. When I first got POTS, I could barely walk 2 min. After getting on meds, I regularly practiced walking and got to the point that as long as I rested and didn't overdo things, I could be on my feet for quite a while. On extra special days, I could even do several hours of shopping, or a sporting event. I would be totally wiped for a day or two after, but I could tolerate. This was all true before my crash in December. Now I'm back to maybe being able to handle 20-30 minutes of walking, though I feel sick the whole time I am walking...and also a lot of the time when I am just sitting. It's a bummer falling backward after all of that progress.

I so agree with JaneEyre. It took me many months to wean off florinef. I reduced by 1/4 pill and then I waited a few weeks before I reduced again. It's normal to feel an increase in symptoms when reducing medicine. Sometimes this is because you actually need the medicine, and other times it's just because your body needs to adjust to the fact you aren't taking the medicine any longer. I have had the same issue with reducing atenolol. The first couple of weeks are really bad, and then things seem to calm down. I've been able to reduce the medicine by just going a lot more slowly than the doctors suggested. I was on florinef for a year - it was the first med prescribed to me. I was just given midodrine last week, and I have to say that it's a much easier drug to handle. It can be taken as needed and there are fewer side effects. Wish I had tried this before florinef, because weaning off florinef was a nightmare for me - almost as bad as getting POTS in the first place.

I had a carotid ultrasound when I first got sick. I was told that carotid blockage is pretty rare, especially in young people. I'm not sure whether it would be portable. I'm not a dr, but think your symptoms can be explained by POTS.

Hi, I work a very stressful job. I continued full time for about a year after getting POTS and then realized I couldn't handle it any longer. I was spending every evening on the couch and every weekend in bed, and realized that it didn't make sense for me to push myself so hard. I switched to 4 days/week after that. Wednesday is usually my day off. The arrangement has been great, and I've used the extra day to exercise and do other things to improve my condition. -Rita

I use aromatherapy slippers which have a microwavable insert. Just pop them in for a minute and instant heat to your feet. Cold feet are common for many of us. However, if this is a new symptom, you may want to touch base with the dr. You also may be more dehydrated than normal with the flu.

I also had lots of dizziness when I first got POTS. My cardio insisted his was separate from my POTS. I went to an inner ear dr, did 3 months of vestibular rehab. The rehab really helped me, but when dizziness came back, we figured out it was POTS and not ear. I would do the exercises your dr prescribes, because it did help me. I still use some of the techniques when I'm dizzy, like staring hard at an object to make me stop feeling I like I'm moving. Some people here do have ear problems in addition to POTS - but POTS itself can cause severe dizziness w/o having an ear problem. I am not even sure it's deconditioning, because I am dizzy right now during my crash but in good shape from exercising all last year....for me it's part of the lightheadedness. -Rita

When I went to Mayo, they recommended Dr. Kaufmann at Mt. Sinai, who I'd already seen. My appointment this morning went much better than expected! It was with a nurse practicioner, who seemed to have at least heard about POTS and knew to take my BP standing up. My BP dropped a bit, which it doesn't always do -- explains why I've felt so dizzy. Then the dr came in, and he knew quite a bit about POTS too. He explained what was going on with my body and the different treatment options. He mentioned midodrine and SSRIs, which were the exact two meds I was thinking about for myself. I'll be trying out the lowest dose of midodrine this afternoon. I am so excited and relieved - even if the med doesn't work, it seems I finally have someone that can actually help...