yogini

Yay! My DVR doesn't allow me to record more than a week in advance, so hopefully I'll remember. I wonder if there is a tech savvy person among us who knows how to post the video so that everyone could have access...I know people do this all the time on You Tube, don't ask me how.... I've watched the show once or twice. IMHO, they tend to overdramatize things sometimes, so I hope they do a good job and are factually correct!

Tea, I do take it in the am...otherwise I'd probably find myself vacuuming in the middle of the night! Good luck in trying CoQ10. PM me and let me know how it goes...

Interesting. I've noticed that I had to go to the bathroom less frequently when I was on higher doses of atenolol, so I've wondered whether excess adrenaline had something to do with it. And like Kristen I've had the bathroom problem long before POTS...really all of my life. I used to drink a lot of caffeine, so that might have been part of it too...but I don't anymore and still have to pee all the time! Anyway, it is mostly just annoying and embarassing, but I hope they continue to study this issue!

Were you taking florinef or other meds when you had the tilt table test? If so, that would have skewed your results....(your results might have been stronger without meds). If that is the case, the meds you are taking may be working and you might want to re-consider going off of them. I take atenolol. I do find some side effects - fatigue, weight gain, exercise intolerance. But for me well worth it.

Sorry for the confusion - 1/1 means Jan 1, so it's been 10 days, pretty close to the 2 week mark. I'm planning to slightly reduce my beta blocker this weekend, so after that it could be hard to tell what is attributable to the CoQ10. Lucily, I haven't noticed any negative side effects at all. Normally I used to feel kind of "blah" for much of the day - like sleeping or vegging out on the couch all day. I would get bursts of energy to do things, but then I would crash or at least have to rest. With CoQ10 my energy level feels a bit more constant - I do feel "blah" sometimes, but overall, I feel more alert. I've even found myself spontaneously vacuuming and doing other things which require energy in the evenings after dinner - normally I'd be camped out in front of the TV. My sleep has slowly been improving over the past couple of months, but I can't say for sure that the CoQ10 has helped on that front. I've seen CoQ10 mentioned in articles and on the news (including re: cardiovascular health) and that was part of my reason for trying it - I think in old posts some others have reported mild improvement form it. I think I even read somewhere that it is being used in lieu of beta blockers to treat some conditions. I got 60 pills for $12 at Vitamin Shoppe, so at a low dose it is pretty reasonable...and, for me, well worth it...

Hi Ernie, I have mild IBS. I think the meds you'd be given would depend upon the symptoms you're having. My main symptoms are gas and reflux and I've tried various OTC and prescription antacids, as well as simethicone for gas. If you're having diarrhea, etc, I'm sure there are many other meds. There are also dietary changes you can try, which are probably better to try first before going to meds. In terms of foods that cause gas and bloating (broccoli, beans, etc.), I think there is good info on WebMD. Plain, bland starchy foods like potatoes and rice are really easy to digest and settling to the stomach. You may also want to look into trying probiotics - good bacteria. I tried these recently and they seem to help with digestion. And I also agree with the suggestion of experimenting w/ cutting out wheat and milk products - this could possibly help not only with digestive issues, but with dysautonomia (or other chronic illness) symptoms.

Hi everyone, I started taking a low dose (50 mg) of CoQ10 on 1/1. I never expect too much from supplements, but I'm actually feeling more alert and feel less need to take a nap in the afternoons - I was taking one almost every day before. I especially notice a lot more energy in the evenings. I've been making a lot of other positive changes which have slowly been helping me to feel better, but think the extra energy is from the CoQ10 b/c I started to feel the changes right after taking it...so I'm pretty excited! Right now I'm going to stay at the low dose and see how things go. I'm making other adjustments and don't want to do too much at once. But I may think about increasing it sometime down the road. I know people ask about CoQ10 sometimes, so just wanted to share! -Rita

I think I saw 40-50 somewhere, but don't remember where (maybe one of the websites would have them or know). If not, maybe you could get them custom made. Another option would be a compression girdle. I think my worst pooling is in my abdomen, but unfortunately I can't tolerate anything tight on my stomach!

I wasn't really one to get sick much before getting POTS, though I always got a few colds every season. I didn't get any colds at all for the first couple of years I had POTS. The last couple of years I had two colds, which were thankfully short-lived. I'm not sure there is an autoimmune component to my POTS - I think my "good luck" is from being extra careful in taking care of myself - vitamins, flu-shot, hydration, rest, etc....not to mention being a recluse (not by choice)!

The chills and goosebumps don't bother me that much. I just get a strange feeling in my head - and after the midodrine wears off I also feel very weak and strange. I'm able to function OK w/ just beta blockers, but use midodrine for special occasions and emergencies.

Theoretically, your increase sounds fine because the max dosing for midodrine is much more. But if you're so sensitive that you can't even take 3.75 at once, I'm not sure how you would react to spreading it out over time. I'd check with a dr or pharmacist (these can be helpful if oyu can't reach your doc)...but they might not know either. It might be worth experimenting with when you have some down time. I think slightly high BP for a couple of hrs is not so bad - it's really sustained high BP over long periods of time which causes the damage. And if it works, it could be a great tool for you. I've only tried midodrine a handful of times and I do feel strange at the when I first take it and again whenit wears off. I don't take it unless I need to b/c I don't like the way it makes me feel. But the strange feeling has lessened a little over the few times I have taken it.

There is a separate version of Gatorade with twice the sodium - Gatorade Endurance, I think. It isn't low sugar and I think it's mostly available in sporting goods stores. I'm totally trying to cut out sugar substitutes, so I don't think I'll be trying G2 anytime soon. It's too bad they can't come out with a decent tasting low sugar, high salt drink. I guess there's no way to make all that sodium taste good without the sugar!

Julie, Is the manual therapy just for GI problems or also for POTS in general? Is it covered by insurance? Thanks, Rita

Funny, I went to Haleakala in 1995 and didn't have any problem. That was a decade before I developed severe POTS, though I often wonder whether I had it before my symptoms became severe...but maybe I didn't. I have 2 close friends (non-POTS) who have separately gotten altitude sickness when they went skiing - they had vomiting, headaches, fainting. Since my onset of POTS, I've avoid places of altitude just to be safe. It sounds like you made it through with some symptoms - but probably worth it!

FYI, I asked my cardio about this a while ago and he said that he has trouble getting cardiac rehab approved even for some of his serious patients like stroke victims. And I actually have pretty decent insurance. I am not one of the worst cases of POTS, but had a lot of trouble exercising, esp at first, and could've benefitted from some guidance. Just wanted to mention that ins coverage might be an issue...though hopefully not for you!

What helped me is to start really slow and ease into things. And to exercise regularly. Exercises where I am lying down (swimming, pilates) or sitting (recumbent bike) are the easiest, along with walking since it is slow. I worked with personal trainers for a while (meaning to get back into it) and that was great b/c they gently pushed me. Cardio was impossible at first and weights were hard too. I had to work up to both of them and still can't do them on my off days. Right now I'm really into yoga and it is helping a ton, but I couldn't have done it if I hadn't tried all the other stuff first. I love yoga because I actually feel energized after doing it, as opposed to feeling wiped out as I do from the other exercises. You may also want to read through old posts as this comes up a lot. Like some of the others, exercise has been a lifesaver for me. Hope you find something that works for you!

I saw this movie in the theater. I didn't post about it because I thought it might stir up things a bit. I think the movie is very worthwhile seeing. The point of the film is that the US healthcare system is grossly inadequate in many ways. I think most of us would be hard pressed to disagree with this. In making his point, Moore does take some liberties and in some cases exaggerates, as he does in some of his other films, but it does not mean that he doesn't raise some valid points. I'm currently on a leave of absence from my job - I actually quit my job and was thankfully offered a leave of absence - so I did extensive research about buying health insurance before this all happened. My company is paying for my health insurance for several months (god bless) and after that I will get COBRA for 18 months, so I am not so worried because I expect to be back at work before my insurance expires. But the ability to purchase health insurance depends upon the state you live in. In my state (NY) it is illegal for insurers to discriminate based upon pre-existing conditions - but this means many of the top insurance companies don't offer insurance at all for individual purchase in NY. And buying insurance is about 4 times the price as in other states. In TX, where my parents live, if you are rejected by a private insurer you are eligible to buy insurance through the state and it is reasonably priced. The laws are very complicated. From what I have read people in places such as Canada and France are generally happy with the socialized medical system until they develop medical problems. Then there is a wait to see specialists, etc. as we have heard frequently from Ernie and others. Often some of these people come to the US for treatment and many doctors from other countries also try to come here to practice because the money is better. And I am glad that we have excellent specialized medical care in our country. However, on average the people in countries with socialized medicine are more healthy and have fewer diseases than in the US. So if I were a politician making a decision in the best interest of ALL people, it would be a no brainer. I think that the solution in the US is really not all that difficult. They could offer a free base level of health insurance/health clinics for people who are uninsured or who cannot afford it and regulate pharmaceutical industry better. And then people who wanted could supplement with private health insurance or pay to see specialists as needed. The government could also regulate profits for pharmaceutical companies. I was in Italy for several weeks this fall and I didn't see a single commercial for any kind of medicine on TV. The mentality in the rest of the world is just different. Part of the problem is that profit from the current system lobby strongly to keep it in place, so any big change is going to be super difficult.

I think we all try to be really careful not to push ourselves too hard, but inevitably it sometimes happens. It's like some of us are on a tightrope and can manage to survive as long as we stay within our limitations. But it is inevitable that we will bobble or even fall off sometimes. The problem is not really us, but the fact that we are stuck walking on the stupid tighrope in the first place due to POTS. I think any level of POTS is seriously debilitating. Like you, I'm probably among the more active people on the forum and I feel grateful for that. Yet I can't do as much in one day as my 60ish year old parents and I can't help but feel sad about that from time to time. I used to beat myself up a lot each time I overdid things, but over time I've developed a different perspective. I do think there are many things that are worth pushing ourselves for, even if there are consequences later. And we develop a better sense of what is important over time - I have given up some activities and cut down on others that I don't think are worth it...and stopped volunteering myself for everything under the sun. Although I miss some things, overall it's actually a huge relief! I also think we can learn from each experience - learn to plan better, etc.

Compression hose work by squeezing your legs to prevent pooling and increase/maintain BP. I didn't even know that Walmart carried the hose. What really matters is the brand - I wouldn't be so sure about a generic brand from Walmart but if you got a brand like Jobst it should be fine. Many of us here shop online at Brightlife Direct or Ames Walker. (You don't need a prescription to get compression hose from these places - you may want to consult with your dr anyway to determine the strength of the compression, brand, etc. ) I've gotten pairs from Brightlife - they have a tape measure that you can print out and measure yourself and so I haven't had much problem with fitting. There is one brand (Juzo) which doesn't fit me at all, but other than that I've done great. I've also gotten measured through a local medical supply place and they told me that most people don't need the custom made ones. My insurance reimburses me 80% either way, but even when I pay 20% the online places are much cheaper. Good luck.

Haven't taken in a few years, but didn't have to refrigerate mine. If it looks different than what you're used to, I would double check with them to make sure they gave you the right med!

I agree with Melissa and the rest of the gang. The most common reason for fainting or feeling lightheaded after eating is the low BP caused by eating too much or too many carbs. Eating smaller, high-protein meals might help you...as well as avoiding some of the other foods mentioned above. Also when you lose a lot of weight in a short time, you'll probably wind up putting it right back on. It's much better to gradually adjust to a diet and lifestyle that you can realistically keep up even after you lose the weight. Your results will be much slower, but are more likely to last.

Hi Mark, Welcome - glad you found us. I don't know much about these issues personally, but the literature I've read seems to say that POTS can occur following any major trauma (such as your accident) or surgery. So really either could be the cause of your POTS. Where do you live? There is a physcian list on Dinet which might help you to find a dr. Good luck!

Tessa, I don't think a HR of 95 is too bad. Some of this is trial and error, maybe you could try dancing for a little period of time and see if you still feel sick the next day. I used to go out dancing til the wee hours of the morning many nights before I got sick. I can exercise, so I could probably dance for at least a little bit..though I haven't really tried since getting sick. Flop, I'm surprised that doctor told you not to exercise!

Drugstore.com also has a good drug interaction checker.

As far as I know, POTS patients are not deficient in salt. I just think that salt doesn't really seem to wreak havoc on our bodies in the way that we might expect based upon the warnings. The general population is constantly being warned about the bad effects of salt b/c they have a tendency toward high BP, but we need the salt. And if your kidneys are working properly, your body actually gets rid of the salt that you don't need. There probably aren't too many nutritionists that know much about POTS. Every doc I've seen has said to load up on salt, and no one said anything about balancing out with other electrolytes. . Some electrolytes (such as potassium) can actually be dangerous to supplement. The best way to know whether you need supplements is to actually take the high salt and then have your blood drawn regularly to see if things are off balance. But if your electrolytes are off balance you would probably know it pretty quickly It doesn't seem like many of us need to take any supplements due to the salt loading. I do like to take a multivite which has calcium and magnesium and a trace of potassium - I would probably do this even if I didn't have POTS.