yogini

Yes, this happens to me when my POTS is acting up. I usually feel the worst after lunch. I have tried to follow all of the "rules" - cutting back on carbs, smaller meals, etc., but doesn't seem to help much.

Hi. I have had a lot of trouble doing cardio. I've had to work my way up from 2 min to 5 min to 10 min all the way up to 45 minutes. I've recently discovered that it helps to wear compression hose when I exercise. Other things that help are monitoring my HR closely (and not letting it get too high) and also taking my time to cool down, even lie down if needed afterword. I can't do resistance exercises much, but I have found that doing pilates with a trainer on a pilates machine is really effective.

I have taken to washing my hair every other day since getting POTS. There is no way I could shower twice in one day when my POTS is acting up, let along wash my hair twice. I have a hair dryer stand at home. It makes drying my hair so much easier, since I don't have to hold the hair dryer. Best $20 I ever spent!

I did water exercises for a while and had the same problem showering. I put conditioner in my hair before swimming and then took a break before showering - either stting in a chair by the pool, or just going home and resting for an hr before showering. It isn't great for your skin or hair to wait, but it was much easier for my POTS....

I have just gotten back to exercising over the past couple of weeks, after not having exercised for about 3 months. I must say that I can definitely tell that it is helping. My HR goes up and I feel slightly uneasy for about 1/2 hr after, but then that calms down and then I start to feel really good. I think exercise brings up your BP, and then it stays up for the rest of the day. If exercise seems to work for you, I would definitely stick with it. It is non-medical, no side-effects, etc. Just be careful not to push yourself too hard. Over time, things will probably get even better for you and you won't have to exercise every day.

Hi, I was prescribed midodrine 2.5 mg a few weeks ago. My doctor prescribed it 3 x/day, but told me it was OK for me to skip a dose any time. ( (In reading through the posts on this forum, it seems most people take 10 mg 3x/day.) So I have been taking the midodrine only as needed. I actually started out with 2.5 mg and didn't like the side effects, so I cut it to 1.25 mg. I can feel the midodrine when it starts to take effect and also when it starts to wear off. At first I got really dizzy at these times, but this seems to be getting better. I have noticed that, when I do take it, it gives me more energy and I can also walk faster - my body just wants to walk faster without my even trying, if that makes sense. My BP is naturally very low (90/60), but I still don't feel comfortable lying down on midodrine. My doctor told me it is better to avoid taking it if you know you're going to be lying down. 2.5 mg is a very low dose, but still probably not worth the risk. I have had to up my beta blocker in the last couple of months, and I am hoping I can slowly incorporate midodrine more and pare back on the beta blocker, which makes me dizzy and tired. Since the side effects seem to be getting better, I might try to up my dose to 2.5 mg. Like you, my POTS had been in check for a while and I suddenly started having stronger symptoms due to some unexpected stress -- among other things, I also work long hours at my job. Now that the stress has been alleviated, I am hoping that things will even out in another month or two. I hope the same for you! Let us know how things work out with the midodrine. -Rita

You should check with your doctors, but having high BP on midodrine probably means that you are taking too much. I would take this as a good thing - maybe your body is better able to maintain blood pressure now than it used to be.

I have the same exact thing. I am pretty sure I am having vivid dreams because my heart is already beating fast. Then something startling will happen in a dream - like falling off a cliff - just at the point where I wake up. This is a pretty common symptom - you may want do searches on this topic. I find that this especially happens on days when I have over-exerted myself. You may want to keep track of your activities.

The midodrine helps my dizziness once it settles, but unfortunately, I can feel it entering and exiting my system. At those moments, I feel dizzy. I guess it's just me who feels this. I do think I am feeling it less each time I take it. I have only tried it a handful of times, so hopefully it will get even better over time.

Hi Tea, First I just wanted to say that I'm really glad that your trip to Mayo went so well! I am glad you have some answers on what's going on with your body. In terms of the sleep thing, I also struggled about whether to take sleep meds. I finally backed down last year and started ambien, because I wasn't sleeping for several nights in a row and needed to break the cycle. My personal theory on the sleep thing is that we don't sleep either because our HRs or BPs are off - it's hard for the body to rest in that state. I'm wondering whether you could try a low dose - like a 1/2 or 1/4 ambien - maybe take it in the afternoon and let your husband watch you to see if you are breathing? This has made such a difference for me and I definitely think it's worth a try. I was so worried about dependence and it took me 8 months to go through 30 pills, and I really think it has helped. Anyway, just my two cents. -Rita

Hi Cardiactec, One thing that I am encouraged about by your post is that you have only been taking florinef for 1 1/2 months. This probably seems like a long time for you, but it actually isn't. My experience with meds is that they take a while to settle in and get the full benefits - especially with a steriod such as florinef. And once you start feeling better, you can maybe do some exercise, and then start feeling even better, etc., etc. It took me two years before I really started feeling better. So I would not rule out working in the job you want in the future. Maybe it'll be a year or two down the road that you can do this. In terms of your job, did you come out and ask them whether you could do it seated? I have a hard time asking for what I need to. One of my friends at work is about 20 years older than me, and I asked her for advice when I needed my own accomodations at work. I think women in particular have a hard time speaking up and aksing for what they need. They might turn you down, but, who knows, the respose could also be much better than you expected. I hope things work out for you the way you want in the long run. -Rita P.S. 0.3 is a pretty high dose of florinef. I do think that 0.4 is the highest. 0.3 is more than 0.16 - about twice as much! Glad it's working for you, though.

Hi Rachel, I use an Epilady type device to remove hair from my legs. I have been doing this for years. I have a lot less hair on my legs from doing using the Epilady, and the hair grows in a lot slower and thinner. Some people find it painful. It does hurt a little at first, but not at all anymore. I have really dry skin, so when I shave, I just wind up cutting myself or getting razor burn. I usually just leave my ingrown hairs - luckily, mine aren't painful. But a good way to prevent them is to exfoliate using a loofah or scrub if you are able. Or you could try TendSkin as Emily suggested. That's the product for ingrown hairs - and there are a couple of other brands out there too. They're salycilic acid, which is the same indgredient as in OTC acne medicaiton. I usually wear the opaque compression hose in the winter, then I switch to the more nylony ones in the spring. Once it gets hot, I don't wear my stockings outside. I find that I'm extremely sensitive to temperature - cold too,. but especially the heat. I had actually put my hose away for a while, but now I am back to wearing them So we will see what happens this summer. I am hoping that I can use Midodrine instead of the hose. It's funny that you posted this topic, because I have been having my on struggles with compression hose, though different than yours. For me, they are so tight and uncomfortable. I find that the Jobst opaque ones are easier to put on. But I can't tolerate the ones up to my stomach, because they give me reflux. I think they dry out my skin by absorbing the oil - mosturizing helps, but I can't do this as much as I need to because of the stupid hose. And I just don't like that constant squeezing feeling. When I put them on, I feel like I want to take them off right away and I am so relieved when they are finally off. -Rita

Poohbear, Get well soon! Hope you make it home this weekend. -Rita

Hi Tessa, Your experience sounds horrible, but unfortunately not that unusal. I went through something similar, although luckily they didn't have to administer drugs. I couldn't get up after the TTT. They administered IV by rapid infusion and that helped a lot. I agree that it's miserable, but the good part about it is that it's over now and you finally have a diagnosis!! I am surprised that they allowed your cardio to administer the TTT if he wasn't familar with the test or with POTS! Were you on beta blockers when you took the test, because this would have affected your results. -Rita

The literature saysdthat most forms of dysautonomia, including the associated low BP, are not dangerous and do not shorten our lives or hurt us in any way, other than to make us really uncomfortable. You might hurt yourself fainting, but I don't think that the typical low BP associated with POTS would cause organ damange. 80/50 is not to far from my baseline BP of 90/60 - it always was that low even when I was a "healthy" person pre-POTS. Part of this probably depends upon the person, too.

I took florinef for a year. I agree that it is not "dangerous" - it is an FDA approved drug that has been used for ages. On the other hand, it isn't exactly one of those drugs that is mild on your system. It has some tough side effects, including headaches, weight gain, high BP and potassium loss. All of my docs kept telling me that they'd prefer me not to be on it in the long run. I am not sure about the long-term ramifications, but I think it was a lot more than just bone loss. I also had a really hard time weaning off of it when the time came. The same doctors seemed a lot less concerned about my being on beta blockers in the long run. I am a big believer in medically treating POTS. I agree with the others - I would do almost anything within reason to improve my symptoms, and florinef is not an unreasonable option. But I do wish my doctors had thought to try midodrine before florinef. I find it a much easier drug to deal with for increasing BP.

Welcome back! Glad you're home and that things have been stable.

Hi everyone, My new doctor prescribed 2.5 mg midodrine a few weeks ago. I tried taking it a few times and it seemed to help a little, but it felt a little strong and I got really dizzy right after taking the pill and then again right when it wore off. Do any of you experience this dizziness? Does it start to go away after a while? I don't mind the goosbumps/creepy crawlies so much, but the dizziness is really uncomfortable. The pill is scored, so I decided to just try taking 1/2 of it yesterday afternoon. I get tachy and tired in the afternoons after eating lunch, no matter how hard I try to eat small meals and avoid carbs. Well, I took the midodrine and the tired feeling went totally away. I was able to take the train home (which I hadn't in weeks) and not feel dizzy (the train usually made me dizzy even when all of my other POTS symptoms were OK). So I am thinking that I'm probably going to take midodrine a bit more. Does anyone else take such a low dose (1.25 mg)? Do people normally develop a tolerance and have to take more over time? I was even able to take off my compression hose yesterday afternoon. I am not sure why such a low dose helps me. I've been wearing compression hose and salt loading, and this didn't seem to do much for me. I'd prefer to boost my BP the natural way, but it just doesn't seem to work. I know this topic comes up a lot. Sorry if these questions have already been asked, but I didn't find anything when I did a search. -Rita

Hi Rachel, At my last exam, my doctor told me that the risk of blood clots in healthy,non-smoking females under 35 is pretty low - something like 1 in 10,000 and birth control pills double this risk, but even then it is still pretty low. (I may be off on the statistics, but you get the picture.) I personally opted for a low dose BCP because I wasn't sure how I'd react to it and whether it'd worsen my POTS. At the time, I really wanted to try an SSRI, but I heard that there was an adjustment period and didn't want to deal with this while working. I actually didn't have any side effects when starting the birth control the first time around, but I am having some now after stopping and re-starting. The beneficial effects were so gradual and mild that I didn't even realize them until I had stopped taking the pill. I do think every little bit helps. You may also want to do a search on this topic, as it seems to come up a lot. -Rita

I generally believe in vaccinations and medication. I would not hesitate to take any medicine that would protect or mprove my health. However, I am very reluctant to try anything that hasn't been out on the market for a few years, unless necessary. Although drugs, vaccines, etc. go through FDA trials before being released, there are often side effects and reactions that we learn about later. I think Gardasil is on many peoples' minds mostly because of the media attention and political controversy. My understanding is that the risk of cervical cancer is very low in the U.S. - it is even more rare than POTS. And, because most people get regular GYN exams, there is a high success rate for treating cervical cancer. Some of the articles I read mentioned that Gardasil is more important for people who live in third world countries where they don't have good access to health care. I also think I'd be more inclined to get vaccinated for something highly contagious through casual contact, like measles or even the flu. I do think it's a personal decision and I'm slightly above the recommended age range. If I were in the age range, I think I'd wait a few years to see how this played out before getting this vaccine. -Rita

Hi Morgan, I am so sorry this happened. I can only imagine a small fraction of what you're going through. I have had minor traumatic experiences with doctors - the last one was a year ago, and it took me a year to look for abnother doctor - and that was only after I had missed work for a month. I think when these incidents happen, it is really demoralizing and you need to take time to grieve. I hope you will at least continue with your gastro appointments and touch base with your cardio. Maybe he could suggest another PCP or be able to take over managing things? -Rita

Thes look like articles on the topic, tho I can't access the articles: http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_DocSum, http://content.nejm.org/cgi/content/extract/340/25/2006 What I'd found before were patient postings on another forum, such as: http://www.medhelp.org/forums/cardio/messages/36174.html

Hi Sophia, I've always loved the blue version of Fantastic (oxygen?) because it has hardly any smell. It comes in a spray, though, not wipes. I also have Lysol wipes and the smell is also mild. I used to be horribly sensitive to smell, but not so much anymore, so maybe someone else can confirm. -Rita

Hi Rachel, I find it very strange that they wrote you a letter instead of just calling you to cancel the appointment, especially since you hadn't even seen the doctor before. My personal experience is that receptionists know nothing about POTS, nor do most nurses (nor do most DOCTORS, for that matter of fact). If this doctor was recommended to you by multiple POTS patients, maybe you or your husband can call back and ask if there was any misunderstanding - that you have the same exact condition as many other patients he treats, so he should be able to help you - if those people are comfortable with your using their names, maybe that would help you too. I'm not sure it makes sense to send something in writing at this point. It will take time and effort for you to write and more time for them to review and get back to you; you can always do this at a later date if the matter can't be resolved over the phone. Hopefully it's just a misunderstanding that can be cleared up tomorrow. Let us know how it goes. -Rita

For me I think 49% is my "normal". I don't think I am dehydrated, but benefit from having extra water weight. I think I could even feel the difference between 50.5% and 49%. My goal is to try to figure out how to control my water weight and gain a couple more percentage points over the next few weeks.