yogini

It is a bit confusing - maybe because the original source was not in english. I think it says that bad air triggers changes in some people's bodies which lead to heart disease. It does not seem that autonomic dysfunction was the main point of the study, so hopefully it's not applicable to us.

Hi. I get tired showering too. I used to shower every morning before work, but since my last POTShole I started showering at night. I don't feel as clean, but it is much easier for me energy-wise. That way I just collapse after the shower. I have thick. long hair which I insisted on washing every day up until I got POTS. Now I wash every 2-3 days and use the Klorane spray shampoo in between, which works but has a little bit of a smell. I used to like Paul Mitchell Dry Clean Only, but don't think they make that anymore. I'll have to check out some of the other brands you guys mentioned. I do find that I have problems with my scalp because I think my scalp never adjusted when I stopped washing my hair every day. Actually in the salon they tell you not to wash every day, so we shouldn't feel bad. For those of you that have trouble blow drying, try getting a hair dryer stand from Bed, Bath and Beyond - it's just $20 and you can blow dry w/o having to hold the hair dryer!

Yes! I definitely notice that I get gas sometimes when I am having episodes or when I'm exercising. About two days before I got REALLY sick in Dec I also had the worst gas. A couple of others have posted about this before too. I did a web search once and found some postings on a cardiology forum where people thought that the gas feeling was actually irregular heartbeats. I'm not sure if that's it, but I definitely think it's something heart-related.

Beta blockers are one of the most effective treatments for POTS. While some can't tolerate them, as the others have said, they're a lifesaver for many of us. As with any other med, it's also a matter of trial and error, finding the right BB (there are many different ones), finding the right dose and learning to live with the side effects. You can search thru some of the old posts, as this topic has come up a lot. Good luck!

I bought my scale a few months ago. My body water percentage is usually between 49-51%. I do feel better when it's on the higher side. Maybe you can talk to your doctor about it. I wouldn't get worried just yet, because maybe the scale is not as accurate as tests your dr can run.

There is a magazine which puts out a list every year of the top doctors in NYC (in all specialities) including the insurance accepted and many don't take any insurance at all. I guess if they have enough patients willing to pay out of pocket, I don't blame them as I hear insurance companies are a pain to deal with.

Thanks, Michelle. I loved this and emailed it around to some people. He describes POTS in a very user-friendly way and also does a good job of explaining what it's like to live with POTS and some of the things that help. It seems like we are slowly starting to see more publicity these days. Hope it continues!

I agree with Flop. 0.3 is a pretty high dose to be on. Can you tell any difference in your BP or HR over the past couple of weeks? If your legs are sore, it could be from a potassium deficiency, which can be a side effect of florinef (as is the weight gain). Also, 2 weeks is probably too short a period to know whether your symptoms have gotten permanently worse or whether you're just having a bad spell. If it lasts for several weeks or months, it's a different story. Probably a good idea to touch base with your dr anyway.

I think people in colder climates are also more likely to get viruses, which are a big cause of POTS. This may be another reason why there are fewer people out West. Most people have also included their hometown in their profile - if you're looking at a post it shows up on the left hand side under the username.

Thanks for taking the time to drop in and share your update. It's always encouraging to hear about someone's improvement. I worked with a personal trainer for 1 1/2 years. I've gotten off track for a few months and need to get back into it. Hope things keep up for you!

Melissa, I agree with you that those numbers aren't cause for concern for most people - even I'm not concerned, just uncomfortable...and I would feel safe moving around. My POTS is moderate and, though we are all different, IMHO the numbers mentioned generally would not be indicative of severe POTS/dysautonomia. Emily, thank you for your questions - I'm not sure I understand either...

Catherine, you said your circulation started to fail after jogging for a couple of minutes - does this mean you felt faint? Melissa, when I am lying down and my HR is 100, it is highly uncomfortable for me - not dangerous but uncomfortable enough that I cannot sleep, get drenched in sweat, etc. And my normal lying HR is somewhere in the 70s - my symptoms usually start upon sitting and worsen upon standing (where I would not flinch, and might be thrilled, if my HR were 100). So it might depend on what your baseline numbers are in the first place. That being said, I'll go so far as to say that I'm not sure that tilting the bed upward would be effective for most of us as it was for Catherine. But I guess we're all different and anything that works for some of us is a good thing. I tried the "leaning against the wall training" when I first developed POTS and I did find it mildly helpful. I am not a fainter, but I would never push myself to the point of extreme tachycardia or lightheadedness - certainly not fainting. I actually found practicing walking in small increments a lot more effective than the wall leaning.

Is this a POTS doc that's giving you advice? Florinef helps a lot of folks, but I found it to be "rough" on my system compared to some other POTS drugs. I much prefer beta blockers and/or midodrine. You can also read through old posts on florinef, as your concerns are not uncommon.

How can you tell if you're hypoglycemic when your fasting blood sugars are normal? Sometimes I feel much, much better a few minutes after eating, even though I eat well and didn't realize I was hungry. I think something may be going in with my blood sugar, but not sure.

Caffeine is a diuretic. It causes you to lose water. (I believe it's in some diet pills for that reason.) Coke actually has less caffeine than coffee. I used to drink a liter of Diet Cokee/day before gettnng sick. Now I rarely allow myself to hahave caffeine. When I do, it tends to make my tachy episodes and insomnia worse - not always, but often. I think you can get the calories w/o the risk by sticking to caffeine free coke or sprite.

I do agree with the others that florinef is an effective treatment for POTS and should not be ruled out. But I have a slightly different perspective. My cardiologist, who is not a POTS expert, put me on 0.1 florinef and then increased it to 0.2 when my symptoms persisted. I think he gave me florinef because he didn't know what other options were out there. Looking back I feel that even 0.1 was way too much for me, and I had a really hard time getting off of the florinef - it is a steroid, has some potentially strong side effects and takes a long time to leave your system. A couple of months later I got put on a beta blocker, which I think helped me more than the florinef. And I have been recently given midodrine, another drug to increase BP, which I greatly prefer to flornief because it is much easier to tolerate, can be taken as needed, etc. I really wish I had been given midodrine in the first place rather than florinef. It would have saved me several months of grief. I would recommend seeing a POTS doctor and talking through the various medication options before starting anything. The Dinet page has a long list of things you can try. If your son has such a high HR upon standing, a beta blocker might also be a good place to start.

Since getting ill, I've sometimes been asked whether I'm PREGNANT because I have skinny arms and legs and carry all of my weight around my stomach. I was very thin before getting sick and gained about 15 lbs (on my 5'3" frame) when I got sick, all of which is on my belly. Now I have lost about 5 of that and STILL got asked if I was pregnant as recently as last week. Although I laugh it off, it does strike a nerve because I've lost myself (the way I am used to looking) to POTS. I have a closet full of clothes I can't fit into...which I have held onto for 3+ years in the hopes that I will fit into them again! I think that is your point - a sense of loss - and we all feel this whether or not we are able to work. So, cardiactec, I can understand how you feel. Although you probably WILL develop a "thick skin" to these comments over time as others suggest, this is easier said than done and the comments still hurt.

Great news! Good luck and let us know how it goes.

Merci beaucoup once again, Doctorguest! Can you please send one of these docs my way??

It's been 3 plus years for me. When I first got sick my docs told me I would be completely better in 6 months to a year. It took me about 2 1/2 years to feel a lot better. At the end of last year my situation was similar to Katherine's. I was taking very little meds and living a very active life. I had a bit of a relapse due to external factors and haven't been quite the same this year. All along, my recovery has required a lot of effort in terms of exercise, rest and gently pushing myself to go off of my medication. I'm hoping that getting into that routine again will put me back on track. But even in my current state I'm able to be fairly active and can't complain too much. The articles on POTS seem to say that most people do recover. It is hard to tell if this is true from people's experiences on the forum. If doctorguest is reading this, I would be interested his thoughts as to whether that happens in practice.

I laughed when I read your post. I throw all of my mail, receipts, etc. in a box (or more than one box). Every once in a while, I get a big burst of energy and sort out everything. It usually isn't as bad as it looks, b/c it is mostly junk. Of course even as soon as I've cleaned it up, it piles up again almost immediately! I hope you find the time and energy to do something fun during your time off.

I bought it at kohls.com b/c it was on sale, but they have it at lots of other places, including Amazon and JCP. Here are some links if you're interested. The explanation is pretty cool. http://www.sleepbetter.org/ambient-comfort-pillow.php http://www.sleepbetter.org/ambient-facts.php

I saw the Ambient Comfort Pillow recommended on an Oprah show about improving sleep. The label on the pillow says that it is clinically shown to help sleep and improve oxygenation and circulation. I took that part with a grain of salt, but I found it for 1/2 price so decided to give it a try. I was expecting maybe a small improvement in my sleep, but what happened this week is that my hands have warmed up. I've always had ice cold hands, so it's actually kind of weird. I only have trouble sleeping sometimes, so can't tell yet whether it's helping my sleep. I'm still feeling the same POTS-wise, but I'm hoping maybe my circulation has improved and that I will start to feel a little better. The company also makes a mattress pad, so I'm thinking of trying that next. Just thought I'd share in case some of you are interested.

Hi Rachel, I've only been to Mayo (MN) and would recommend it as a great place for testing/investigation. If you think that you have something else in addition to POTS, they might be able to help you figure that out. You may also want to read through some of the old posts, beacuse people here seem to have had mixed experiences both with Mayo and Vanderbilt, wheras the posts re: Dr. Grubb always seem to be really positive - but I think he is more for follow up care rather than testing. It might be helpful to try more than one of these options if you can manage it. Good luck and let us know what you decide! -Rita

Mkoven, I could not agree with your advice more. There aren't too many doctors that know about POTS, but even among those that do, many of them don't know the ins and outs...not to mention that we all know our own bodies better than anyone else. My docs have sometimes unintentionally led me astray, so I've also leared to listen to my body and just do what works to keep me functional. Flop, I think there are probably people on the forum who have been taking sodium and wearing compression hose (from morning to night) for years. At the Mayo Clinic, they told me that the first step in treating POTS is through salt, fluids and hose, since there are no side effects - if those aren't enough, then the next step is medication. I'm surprised that your dr would give you midodrine and tell you not to wear compression hose! I'm not sure how your health system works, but are you able to find another cardio? I hope you feel much, much better in time for your interview!