pamyla

Hi Jessica, I used licorice root continually for about a year. I finally stopped taking it because it increases estrogen levels which was giving me increased anxiety as well as acne. But, keep in mind, that was after a *year*. My doctor originally told me that I could take it long-term no problem. When I brought my complaints to his attention he told me to take for a month or so, then take a few weeks off and so on. I didn't think licorice root affected potassium levels....do you know where you read that? I'm curious. I was also under the impression that long term use was generally ill-advised because of the high blood pressure (which for us isn't a problem). Keep us posted! Pam

Hi Deb, happy birthday Hope it's a good one!

Hi, I buy from ames walker all the time as they seem to have the best prices I've found. Once you get on their mailing list they give you 10% off coupons for each holiday. That even includes holidays like President's Day, etc. So if you miss this go around they should offer again for Memorial weekend.

I second the soy sauce I'm a big sushi eater and always feel wonderful after consuming all that sodium Also I buy those cup-of-soup things. I drink one of those when I need a little pick me up. And any kind of canned soup also has a ton of sodium in it too.

It's a vitamin supplement that I take - Methylsulfonylmethane (MSM) is a nutritional form of sulfur and supports connective tissue health such as hair, skin, nails, tendons, ligaments, bones etc. Some people cannot metabolize the sulfur well and cannot take it. The typical dose is 2 to 3 grams daily. MSM is one of the major building blocks of glycosaminoglycans. Glycosaminoglycans are key structural components in cartilage and play an important role in the maintenance of joint cartilage. My doctor first recommended it for weak adrenals but I know it's also recommended for arthritis sufferers. hth, Pam

Michelle you are too kind Maybe you should post an announcement on the forum when the newsletter comes out? I don't think I've ever received a notification..... Do you know where your numbness comes from? Jackie - I also sometimes get achy knee. If I've done alot of exercise it can sometimes ache for weeks. And then the weather also affects it a bit, although more so in the first few years after the accident. I've been taking MSM and wasn't sure it was helping until I stopped taking it. About a month after I had a big increase in aches and pains, so I went back on it and they do seem to be better. Oh, and I definitely get those blue feet! When I was on crutches people kept commenting on how my foot was purple

I find this interesting as well. Over ten years ago I got hit by a car - I actually had a bumper imprint on my leg. Anyways, when I touch around my knee there are places that are tingly and numb. I never would have thought about a connection with pots....

I take 25 mg of zoloft. I was originally on 50 mg but feel better on the 25. 25 is the lowest dosage they make in the pill. I tried to go down to 12.5 but felt better on the 25 mg. I take it right before I go to bed. My doctor had originally recommended I take it in the morning, but at first I got hit with the urge to take a nap about 2-3 hours after I took it. So, it worked much better taking at night as it helped me get to sleep. I've never heard of anyone taking it both morning and night.... hth, Pam

Hi, I don't usually have any problems flying either. The only other thing I'd suggest is to wear compression hose. I wear the knee highs and they help me somewhat. As for vitamins, you might want to take some vitamin C before you go. Planes have that recycled air so unfortunately if one person is sick it seems to spread the germs pretty easily. Have a good flight

Hi guys! If you haven't found us yet, please come by and say hello We're starting a Virginia on-line support group and will hopefully learn lots from each other! Also, if you happen to be in one of the neighboring states, feel free to join us as well. http://dinet.ipbhost.com/index.php?showforum=3 Hope to see you! Pam

I've got the dark circles too - ugh. I notice when I don't feel well they become particularly noticeable. I'm 30 and am already addicted to eye creams and concealer!

Hi guys! I'm starting school in the fall and have to make sure all my shots are up to date. There is one that is required for menningitis. However, you can choose to waive the shot if you acknowledge that you know the risks. I'm still debating. Has anyone else had this shot? Have any advice for me? Should I get it or not? I notice that it says it's important if you're living in the dorms, which I will not be. Thanks, Pam

Hi Deb, thanks for sharing. I've also had problems with anxiety. I suppose it could be the pots or it could be actually anxiety - it all seems to blend for me But either way, whatever it is, it doesn't make you feel very good. While the SSRI's may not be for everyone I also take zoloft and find that it helps me. Glad to hear you're feeling better. Pam

Hi guys, just wanted to give you the follow-up and tell you that we booked our cruise - yeah We'll be hitting the S. Caribbean in about 2 months! We booked with Princess and I was happy to discover that they have this on-line list of things you can request. One of the items is a shower stool, which is nice. I'm also thinking about getting a doctor's note saying I trouble standing in lines because I understand they have a special check-in line. I can't wait for all that yummy food! Cathy: Which cruise are you going on?

I second that, when I feel foggy the only thing I've found that helps is lots of rest. I just wanted to add that I've had suggestions to up my dose of zoloft many times and I've never done it. For me, changing the dose (whether up or down) makes me symptomatic so I prefer to leave it alone. hth, Pam

This is who I have been seeing although I'm not sure he's been accepting any new patients. Dr. Alan Pocinki 2141 K St. N.W. Suite 606 Washington, DC 20037 202-223-2282 POTS & NCS Primarily sees patients that have orthostatic intolerance as a feature of another syndrome, such as CFS, Ehlers-Danlos and related hypermobility syndromes.

I have been taking atenolol and zoloft together for over 5 years now. I take 12.5 mg atenolol 2x a day. And I take 25 mg zoloft once a day. No big issues to report, and it definitely helps me function I had some trouble adjusting to the zoloft at first, but from what I hear side effects are pretty common at the beginning. hth, Pam

Yahoo Briefcase sounds similar to what you're describing. It let's you organize files into folders. It's free if you sign-up for a log-in. You could always copy snips from posts into a word document and upload them that way. http://briefcase.yahoo.com/

Thanks for all the input Glad to hear no one seemed to have seasickness problems And good ideas about trip insurance, wheelchair, naps and taking food and water. I'll let you know what we decide to do! Although my husband seems to now be leaning towards the all-inclusive resort deal Either way I'm looking forward to some beach time!

Hi everyone. I'm thinking about taking a cruise this summer. I went on one years before my pots symptoms emerged and had no problems. But now I'm wondering if the pots will make me more sensitive to becoming seasick. Anyone have any experiences to share?

I use odaban, so that might have been me It basically stops your sweating, like a really good anti-perspirant. However, you're still supposed to use your regular deoderant with it so that probably wouldn't help in this case.

Hi, welcome to the boards! I also have high blood pressure with the pots. In answer to your question about high salt, increasing salt makes my blood pressure go down. My doctor explains it that my system is compensating and trying to keep the blood to the head. So, when you add in salt and fluids, you're making that job easier and your body doesn't have to compensate so much. (of course everyone is different and talking to the doctor is a good idea!) Pam

1. Name Pam 2. Age 30 3. Dx POTS & EDS 4. Age at dx. 23 for pots, 27? for eds 5. Where you live Northern Virginia 6. Symptoms at worst badly fatigued, fast heartrate, anxiety, insomnia, muscle aches, brain fog, dizzy, extreme thirst, exercise intolerance, no sweating, always cold, hypoglycemia 7. Symptoms at best tired, exercise intolerance, excess sweating, always cold 8. Medications/treatments, etc. that didn't work for you midodrine, ambien, paxil (couldn't tolerate any of these!) 9. Medications/treatments, etc., that do work for you atenolol, zoloft, sonata, xanax, vitamin supplements, light exercise (walking, swimming, yoga), meditation, pranayama, getting lots of rest, odaban (for sweating), changing diet to avoid sugar and carbs

Have you looked into applying for scholarships? That's what I'm planning to do. I think www.fastweb.com has a listing. I've found a couple that are specifically for people with disabilities. You can always apply for financial aid as well. And you may want to contact someone in your department as there may be grants or assistantships available. (I'm personally hoping for an internship!) As for insurance, most schools offer some sort of coverage. Until then, if you're working you'd qualify for Cobra. It's expensive, but at least you wouldn't have a gap in coverage to worry about. hth, Pam

I get these too. They come on really bad after lifting something heavy or doing any kind of exercise. I figured our bodies were compensating with extra adrenaline?