yogini

Has Mack been tested for low blood volume? It's interesting that his results came out that way because many of us have low BV or symptoms that mimic it. And symptoms similar to altitude sickness too. My friend got bad altitude sickness in Colorado and said it reminded her of me and my POTS! In either case not enough oxygen getting to the brain, but how to fix it? My blood work is always "normal". It's interesting that something showed up here. I hope that looking into this brings you some answers and more/better treatment.

I agree with Poohbear. I think seniors (I'm not one, but have family members who are ) have Medicare as first insurance and supplemental as secondary. So the doc may just be confused. Can you talk the person in her office who handles the claims? Maybe they would understand the insurance rules better. There may be reasons why this doc doesn't want to deal with Medicare (or even the possibility of Medicare). Even if you submit claims on your own, the doc has to fill out some forms for you, which she may not want to do. Or she may have had problems with them in the past. I know very little about lyme, but have heard that some of the lyme docs don't take any kind of insurance. If you think just medicare is a problem, consider mentioning just your main insurance to get an appointment. Then call back before your appointment and clarify the Medicare part to make sure you are covered. I wonder if this doctor is eager to take on new patients. My docs (even if they are terrible with the medical stuff) always go out of their way to help with insurance - I always let them call the ins co for me so I don't have to deal with it. In getting treatment for something so specialized, it might be important to get someone who wants you as a patient, listens to you and wants to work with you on financial/insurance stuff. Good luck and let us know how it goes.

Atenolol was fabulous for me. I think I started out on too much, though, and later figured out a baby dose was enough...we're talking 1/2, 1/4 or even 1/8. Now I just take it as needed. It's great you're taking florinef to help support you BP while you're on it. Good luck - hope it works for you!

I dunno. I have read that beta blockers work for at least 1/2 of POTS patients. I have seen similar stats for SSRIs. But what does it mean to "work". There probably isn't any treatment to "fix" POTS the way Advil knocks out headaches. But there are lots of meds that help people function better. I think that there are many different reasons people don't take meds. Some are scarred because they tried many meds that didn't work --and who can blame them! Others prefer the idea of supplements or more natural treatments. In my mind, I think of anything that I put in my body as the same. There is also a tradeoff with side effects and some people find it easier to live with the POTS symptoms than the side effects. Earlier on in my condition, my POTS symptoms were harder to tolerate and I needed more meds. Now I can live with my sypmtoms and am trying to wean off....though I would not hesitate to go back if things got worse. Another issue is availability - I think we sometimes have to be pushy with our docs to get the opportunity to try different things, which can be hard to do. If doctors were more receptive and better experienced/informed about POTS, we'd all be feeling better sooner. I do think that it's important to evaluate each med differently rather than to think about meds as a whole....because each med is completely different. Even within beta blockers there are several and some are able to only tolerate one. Some are also easier to test out and have fewer side effects than others.

Can you talk to some people working in your particular field and find out what qualifications you need? I graduated from college years ago and did lots of "extras". Looking back, many of those extras were not necessary to be sucessful in my career. And they took a lot out of me, where I could have been dating, socializing, or just plain relaxing. This was all when I was healthy! Since getting POTS, I try to find the simplest path. Three majors and an extra year sounds like a lot of work, which you should think about carefully. And there aren't too many fields which would require that. You aren't happy with your school, but it sounds like living with your family would be stressful too. Not only the living situation, but the health risks and the commute. Are there any other options - can you live on campus? or go to another school with a good program where you don't have to commute or live at home?

When I first got sick the smell of bleach or any kind of cleaner would make me sick...nausea, headaches, POTS flare up. Those allergy face masks or a towel over my nose helped a little. I switched to all natural cleaners a while ago which have a milder smell. I hope you can convince her to go back to the old cleaner!

Has your son tried dietary changes like giving up gluten and lactose? That may help with the nausea.

Glad to hear that neither of you had a bad reaction. It's funny how the news stations were obsessed with H1N1 for months and now you barely hear about it anymore...

Hi. I know a bunch of people were thinking about getting the H1N1. Did anyone go through with it? Did you have any reactions with POTS or otherwise? Would love to hear your stories. Several of my relatives got it and they are all fine, without any reaction. I did hear of one person's 3 yr old daughter getting sick. I'm thinking of getting it now. I got an email saying that it is available in many Walgreens.

When I first got POTS, my dr. told me my constant dizziness couldn't be caused by POTS. I went to an ear dr and they diagnosed me with a probable inner ear condition. I went to rehab for 3 months, did all these crazy exercises for eyesight and balance and was actually feeling better. Then the dizziness came back in full force. That's when the drs figured out it was POTS and not my ear. I was constantly dizzy for the first year or two of my POTS and had trouble walking just form the dizziness. I practiced walking a lot. The dizziness went away after a while and now I just get it once in a while. While you can have both POTS and inner ear, I feel like it is probably related to POTS in many cases. P.S. don't forget the water with your potato chips!

I like the idea of a yahoo group or email. I think the thread on the chit chat forum will get too long and be hard to read. I feel like in the regular forum a lot of good questions and ideas get lost in longer threads. Or maybe we could break up into subgroups based upon our preferred method of communication. Anyway, whatever you all decide, count me in! I am very excited about an exercise support group!

Great idea - count me in! I need to get motivated to get back into exercise/yoga starting in Jan. Maybe we could do our own Facebook group or email list? I'm on email more than the forum...

I was really surprised when I saw this post, b/c I think few, if any, drugs are FDA approved for POTS. Unforutnately, drug cos don't have much of an incentive to spend the time and money getting approval for such a rare, little known condition. I believe most of the treatments in the US are off-label, meaning docs prescribe them for POTS even though they were FDA approved for something else. Wikipedia can be hit or miss b/c anyone can go on there and edit info... so I checked the website of Novartis, the mrfr of Ritalin. Ritalin is FDA approved for ADHD. It doesn't say anything about dysautonomia. http://www.pharma.us.novartis.com/products/index.jsp Setting aside the technicality of FDA approval, people with POTS can sometimes benefit from ADHD meds. The Dinet site mentions Ritalin under "What helps".

One is an echocardiogram, the other is an electrocardiogram. I think it's the electro that they take every time I go to the cardio's office and the echo which is done rarely, every few years. But maybe I am getting that confused and/or using the wrong abbreviations!

Yes, I have terrible dark circles - but I barely know anyone who doesn't complain about this! Thank goodness for undereye concealer, lol!!

Laura, don't be embarassed. I always get confused too! Flop, can you explain the difference between ECG and EKG? I thought EKG was the one with the leads and the ECG was the one where they put goo all over your chest and look at your heart structure? But maybe I have it backward?

Hi - I think the ECG looks at the structure of your heart and not so much your heart rate. It's usually taken lying down b/c they need you to hold still. Most of us have normal ECGs - which is a good thing!

I really liked the video up until the point that they got to the florinef. I agree the risk of eart attack from missing a dose of florinef seems exaggerated.

I have neck and shoulder pain. My mom has it too, though she doesn't have dysautonomia. I am hyperflexible in my neck and shoulders, but don't have EDS. In cases of EDS, there is a clearer connection. But for the rest of us, it's hard to tell whether there is a connection. Neck and back pain are reallly common - many people I know have some form of them.

I know somoene who spent a lot of time at the beach and kept getting them. I think her cause was dehydration, so that could be a link to POTS. Even if you drink a lot, your body may not be retaining fluids properly due to POTS.

Hi Flop, So sorry that your appointment (and travel) was such a trying experience. Do you think Pro Mathias would agree to see you earlier if you told him how it went? As for heat intolerance, I have it too. I've been on Paxil for the past 1 1/2 years and I think my heat intolerance is really exacerbated by the Paxil. I had POTS for a few years before that. I definitely became more uncomfy when it was too cold or hot after getting POTS. But before Paxil I was usually cold and being hot was a lot more bearable. Now I dress in layers - usually a down coat with a cardigan and a tshirt underneath. I take off my coat and sweater (which are light to carry around) and just wear the tshirt once I get inside a store. I noticed boots make me too warm once I'm inside, so I try not to wear them. And keep my hair up in a ponytail. I carry a couple of bottles of cold water, which I keep sipping from to keep me cool. Hope you find something that works!

Not to say that you don't have anything else, but severe fatigue can be a symptom of "just" dysautonomia. It can also be a side effect of meds. At first I was really tired b/c my HR was to fast and my BP was too low. Then I got on beta blockers to help with tthose symptoms, but the betas made me tired. Salt and compression hose helped some. I finally got rid of the extreme fatigue by getting on Paxil and weaning of betas...and a little caffeine doesn't hurt. I hope you find something that helps with your energy!

Ugh, that sounds awful, and the nurse's response makes it worse. A couple of years ago I got a tetanus shot and I felt faint/ shaky for a few hrs after, slept it off and was fine in a day or so. Maybe we should request all of our shots lying down! I would love to hear how you fare in the long run from the H1N1 shot. A few friends' kids have gotten them and seem to be doing fine. Always reassuring to hear success stories.

I used to get sick from alcohol when I first got POTS. I barely drank for 3 or 4 years, but I have started having drinks occasionally again two summers ago. I completely lost my tolerance during the period I didn't drink and have been able to build it back up again. Last night I had 2 glasses of wine and I'm pretty much fine this morning. I can't say alcohol makes my symptoms BETTER, but at least it no longer makes me feel worse. It's great to be able to enjoy a drink or two again - makes me feel more "normal" in social situations. Same thing with caffeine. I gave it up for a couple of years and now I am able to drink it again without aggravating my symptoms - and that actually helps me - gives me more energy.

OMG. I can't believe that anyone would talk to a parent like that. So rude. I hope this woman is not responsible for teaching children manners...maybe you should tell her that the next time she is so obnoxious! I hope you do report her.