yogini

Thanks everyone for your wonderful suggestions and advice. I have printed out the thread and will bring it with me to the stores. I'll definitely stop by Whole Foods, which just opened up near me, and the Freeda store, which, coincidentally, is just a couple of blocks from my office... Have a great weekend, Rita

I'm about to run out of my multivitamin and was wondering if there is something better that I could be taking. I think my current vitamin is Centrum for Seniors because it had all of the vitamins I wanted. But I wonder whether more expensive vitamins from GNC or a health food store would help me to feel better and give me more energy? I have heard mixed opinions about whether they're worth it, and wanted to get your thoughts. Also, the choices are a bit overwhelming. Are there certain brands or combinations of vitamins that any of you have found helpful? I need something without iron, so it doesn't upset my stomach. And sorry if this has already been discussed - I did a couple of searches and didn't find anything. Thanks, Rita

I am dealing with the weight problem too. Right before POTS I was down to one of my lowest weights ever. I admit I was probably too skinny. Now I definitely feel like I look pregnant, because all my weight is around my stomach. Like many of you, I was very active before getting sick, so I am sure I burned a lot of calories. Now I'm mostly sitting on my behind. I lost several pounds last year when I was feeling better and could exercise. But then I had a relapse and I gained the weight back (plus some). I agree that starving ourselves isn't the answer. I start to feel faint (even though I am not a fainter) when I am hungry. We are already suffering so much from POTS, so I don't think it helps us to add hunger to the mix. I do eat very healthy, but I think my appetite is much more than it was. So I am trying portion control. I am also focusing on eating protein and cutting down on sugar. I try to eat smaller meals frequently, because this is supposed to increase metabolism. But that's not always so easy to do. Although diet helps, I think the best way to lose weight is to be more active and/or exercise. But I have gotten migranes, nausea, etc. from trying to exercise when I wasn't feeling up to it. In the end I decided to exercise when I can, but pushing myself isn't worth it. The beta blocker and high salt diet are also a big part of it, but I don't think I could function without them. So for now, I am just living with the weight...

I grew up in Wappingers Falls, New York, which is in the Hudson Valley about an hour north of NYC. I went to school in Cambridge, Massachusetts and also lived briefly in Austin, Texas (where my parents now live). I moved to New York City about 10 years ago and have been here ever since. So I guess I'm vying with a few others for the title of Ms. NY... I love that the forum is such a melting pot, and I can't wait to see the map!

Emily, How are you feeling today? Here's hoping you finally got some zzzzzzzs. I've had a lot of trouble every time I've tried to adjust my meds, so I can totally relate. It took me 6 months to get off florinef and my recent attempt at reducing my beta blocker didn't work either. I think that the others are right that you just need to wait it out. Your body is still also adjusting to your surgery, which makes it extra hard on you. It's really painful to wait it out, but hopefully you'll feel MUCH better in a few days.

i could be wrong, but i think i read somewhere that st. john's wort shouldn't be taken w/ beta blockers. i would check with your dr before taking it...

I'd suggest that we put together a package including medical info and stories from a few people, maybe even pictures. That way, maybe they'd be less likely to ignore us...

Fantastic idea! I'd love to help in drafting the letter....

Hi Radha, Do you start to have your symptoms right after you take a bite? I think that for most of us the problem hits a while after eating. Postprandial hypotension starts when the food makes it to our stomachs. So your symptoms may be something different than just POTS. I would encourage you to talk to your doctor about this, because maybe it's one of the meds you are taking or even the lyme disease you posted about that's causing this -- just a thought. I really hope you feel better soon. -Rita

I have trouble with stairs too. I think it's a pretty common symptom for POTS patients. Walking is bad enough - stairs are like walking times ten! I can do a few steps OK, but when I have to walk a couple of flights it's really hard. I always take the elevator too, so I am sure that makes me rusty. It's kind of strange - I always had trouble with stairs even pre-POTS. I used to work out a lot and was in good shape, yet I would always be lagging behind and out of breath on the stairs.

Hi. One of my doctors is really hard to get in touch with and his secretary is totally non-responsive. One thing I did was get the email address for the doctor and things have been a lot better since then. I get responses very quickly. I'm not sure how far the doctor is from you, but it also might help to make an appointment or drop by the office. I think they are sometimes more responsive to a face than a voice (or at least they can't avoid you if you show up in person ). -Rita

Hey Merrill, I work on the 45th floor of a building. It's funny, just this morning before I read your post I was thinking what trouble I used to have in the elevator every day. I would feel totally dizzy and tachy, as if I was going to pass out. I still get it from time to time, tho I think my body has learned to adjust a little. I generally feel OK after I have settled into my office. Emily, I like your theory about the acceleration. It can't be just the elevation, because I am better in my office and sometimes have the same symptoms going down as I do coming up. And it's definitely worse when the elevator doesn't stop along the way.... Feel better, Merrill, and get some rest this weekend. I think I need a massage too! -Rita

Merrill, You're right. I've been told not to wear compression hose while sleeping because it can cause supine hypertension. Gena, I would check with your doctor whether it's OK for you to wear them at night. If you have super low BP at night, then high BP might not be a worry for you. I will agree with the others that I've found Jobst to be the most comfortable of the brands I've tried. I think I have the opaque (microfiber) kind, and they're super soft and really easy to move around in. I also think they are more effective at keeping up my BP than the sheer ones that I've tried. The surgical stockings are also good at keeping up BP, but they are way too thick and uncomfortable. I am starting to get really warm even in the microfiber ones, though, so I probably have to switch to sheer for the summer! -Rita

I am in the same boat as you. I have gained 15-20 lbs, depending on the time of month. I desperately want to lose it (at least 1/2 of it). I agree that protein and veggies are the important to eat. I generally eat very healthy, grilled fish and chicken, boiled veggies and multi-grain or whole wheat breads. For me I think the weight gain is the combination of not being able to exercise hard-core like I used to pre-POTS, combined with the beta blocker slowing down my metabolism. What kinds of exercise are you doing? Maybe it would help if you start off with something really slow, like walking or Yaz exercises? I did these when I was at my worst. I have slowly increased my exercise routine, moving to pilates. I find it pretty easy to tolerate since most of it is on the ground. After a couple of months of pilates, I am actually able to ride a bike for 15 min. This used to give me headaches and severe nausea a few months ago. The funny thing is that all this exercise hasn't helped my weight much yet. I am hoping that I will start to see some results over the summer, as I try to do harder exercises. It's not easy adding weightloss as another thing to worry about on top of the POTS. Good luck!

Hi Ariella, I can completely relate to your post. I had severe walking problems for the past year. I cannot tell you how difficult it was for me to walk. I felt like the ground was constantly moving up and down, like I was walking on a boat or something. It was a struggle with each step. These symptoms for me started three or four months after I got POTS. I went to several doctors, none of whom knew what they were. I was told it was something different than POTS. I went to an inner ear doctor and to 3 months of vestibular rehab. Towards the end of the rehab, my walking improved a great deal. But then I reduced my florinef and then the full fledged symptoms came back. That's when my doctors realized that the symptoms were related to POTS and not my inner ear...HELLO! This was before I found this forum. I will say that I think the rehab helped, even though my problem was not an ear problem per se. I know some others have this symptom too. Here is a passage from Chris Calder's website which I found only a couple of months ago. I wish I would have known about it sooner - it could have saved me the wild goose chase with the inner ear stuff. "Most POTS patients have poor balance, which may be caused by decreased blood flow to the brain and other disturbances in the vestibular system. The patent's root neurological damage may also cause balance problems directly as well as causing the debilitating symptom of orthostatic intolerance. Patients are often unable to pass a drunk test by walking with one foot placed directly in front of the other. An abnormal gait is common. Patients may walk with legs wide apart and feet flared out to the sides as an instinctive adaptive response to increase their stability." I have to say that my walking speed has improved tremendously over the past few months. A lot of people have been coming up to me and telling me that I am moving faster. (I didn't realize my walking problem was so obvious!) I think what has helped me is practicing walking and the exercise routine I started in Jan, mostly pilates. I do still have trouble from time to time, but it isn't as constant as it used to be. Hopefully your symptoms will improve over time like mine. -Rita P.S. I took florinef for several months and it did help me to feel better.

JLB, you may want to do a search on the forum on this topic. This has been discussed before, and others who are more experienced than me seem to think that POTS can be severely disabling, but is not generally life-threatening. Have you had a full heart work-up? (echocardiogram, etc). Because this really helped to ease my mind. Also, here is a great article that EarthMother posted a few weeks ago regarding arrythmias. It has really helped me to deal with them, and hope it helps you. http://www.toppup.com/htdocs/dcforum/DCForumID1/357.html I agree that it might help you to see someone who is more familiar with your circumstances. There are some knowledgable people on this site, but it is better to get advice from an dr and/or a counselor who can see you in person. Hang in there.

Miriam, Can you please clarify your post? Do you mean that 2 patients died because they stopped their beta blockers abruptly? Because, unless you have another heart problem, I think it should be safe to do it as long as you follow the doctor's instructions and taper it off gradually. I am a bit sensitive about this topic, because I am in the process of trying to reduce and/or stop my beta blocker. JLB and Janine, I have read repeatedly and been told by several doctors that POTS in and of itself is NOT life-threatening. -Rita

The pill is strongest when you first take it. I take atenolol, and my doctor told me that 1/2 of it is out of my system after the first 12 hrs. So the BB is most effective at controlling HR when you first take it. The bad part is that the side effects are also strongest when you first take it. You may want to try taking it at night , and you can always switch back to the day if it doesn't work. I started off taking the larger dose at night, but then I had to switch to the day beacuse of tachy attacks. When I switched around the dose, it made a huge difference. Also, if you decide to take it during the day, the fatigue could get a lot better over time - it has for a number of us on the board. Good luck, Rita

I've worked 80+ hr weeks in a law firm for the past several years. I actually love my job, other than the hours, and had been meaning to find something a bit more reasonable. But the market has been so tough and then I developed POTS last year. I was out on short-term disability on and off for a total of 3 months. I really don't know how I managed to make it to work for the rest of the year, because I was so dizzy all the time and could barely walk. I was lucky to have a lot of help from my family and friends. It was probably just as hard getting to/from work as it was actually doing the work. Though my firm was pretty understanding and let me take on less, I would come home every night with a headache, exhausted and nauseous. Finally I couldn't take it any more and I switched to part-time in January. This has been a godsend for me and my health has improved by leaps and bounds. But now they're trying to pressure me to come back full time. I am trying to put them off while I look for another job. I would seriously quit and take time off, except I am worried about health insurance and how to explain to future employers...I would have to go back eventually. This is such a difficult issue. I think this is a highly personal decision for each of us, based upon our individual circumstances. It is still comforting to know that many of you are in the same boat. -Rita

Persephone, If your BP and HR remain continuously that high, I would also go to the ER. Even if they aren't autonomic specialists, they could still monitor you and give you something to bring down your BP and HR. Many of us on this board resist going ot the ER, but generally we do not have such a high combination of BP and HR. Are you on any medications right now? I am really sorry you are having so many ups and downs. I think many of us are in the same boat. I have become so cynical, that whenever I have a good day (or a good few days), I am always waiting for the next bad day to arrive, which inevitably it does As for your trip, I personally think it's better to be safe than sorry. Here in the US, the airlines let you reschedule trips, especially if you have a doctor's note (they may charge a fee for this). So maybe you could move your trip to another weekend when you are feeling better? It could give you something to look forward to. Feel better soon, Rita

I just say I have a condition which causes my heart to beat too fast, especially when standing up. I know it's an oversimplified explanation, but at least it's something that people can actually visualize and understand....

I am with Gayle. I took florinef for nearly a year but then had to go off of it due to BP spikes. It did help me feel better. I had mild side effects of nausea and anxiety. My doctors were not too concerned because I was on a low dose (.1-.2), but encouraged me to go off of it because of the potential long-term effects. You may wany to do a search on the forum, as florinef seems to come up as a topic pretty frequently.

I really like the forum the way that it is too. I like to be able to skim the headings and see all of the new posts. I read the NDRF forum sometimes, and it seems like most people post under one category even tho there are many different categories. However, I wonder if it might be helpful to have a frequently asked questions (FAQ) section as many other websites do? It might be nice (and make traffic more manageable) to have a central place to answer some of the questions which keep re-appearing every few days, especially for all of the new members. Just a thought...

Tilting the head of the bed up increases blood volume. On potsplace.com, it says the bed should be elevated 4-10 degrees. It takes about a week for the volume to be increased. I did this right after getting diagnosed with POTS. First I put books under the head of the bed, and then I got some plastic bed risers from Bed, Bath & Beyond for about $10. When I am away from home I haven't had any problem sleeping in a flat bed. To be honest, I can't tell whether it has helped my symptoms or not, but it certainly can't hurt. Just another easy thing we can all try which may help our symptoms. I have acid reflux, and tilting the head up is good for that too. Persephone, glad you are feeling better.

I agree with Katherine, I've read that visual disturbances are a common symptom of dysautonomia. When my POTS was at its worst, I had problems with both eyes (dryness, floaters, blurriness, blacking out). These days, I sometimes have trouble focusing, especially when I first wake up. Amy, I also have the field of vision problem in only my right eye. It was constant at first, but now it comes and it goes. My vision tests were normal, so I just chalked it up to POTS an didn't bother to investigate further. Luckily it has gotten a lot better over time. -Rita