ellen

To add to Ariella's recipe for zucchini in marinara sauce: I cover it with marinara sauce, parmesian and mozzerella cheese and bake for fifteen minutes till it's bubbly. For cabbage, you can dice it and stir fry in olive oil. It's so good for you!

I use Benedryl - ( OTC for allergy). It keeps my ears from clogging (change in altitude can cause ear aches) and makes me so drowsy. Why not just call your doctor and ask what he suggests- he might be able to call in a Rx to your pharmacist for something stronger. Hope you enjoy the comvention.

Jaquie- I had a similar question in June- if you do a search for Mayo you can see the response to my post, which was, basically, (sorry ) a no, no one had found a good doctor there. Please let us know if you have better results- ellen

Yes, it's a breath that's not satisfying. I feel like I want to yawn, and open my mouth wide, but still it doesn't satisfy. I also YAWN alot, especially when I'm exercising.

Yes! I have unexplained bruising, on my arms and legs, sometimes toes.

Kathy- I recently bought a pair of JOBST compression PANTYhose (they go all the way to the waist), at Tearose's suggestion. I could only find that brand. I'm still trying them out, but anything is worth a try. The only problem I have is that every time I have to use the bathroom (often, because I drink alot), I have to wiggle back into them. The first time this happened, I put my finger through and got a run. Nail polish stopped it, but I have learned they are very fragile. I would like to know has anyone tried them and found they were NOT helpful? Everyone who uses them seems to recommend them highly. This is a better solution than meds, if it can help. -Ellen

Dear Tears, YES we know how you feel! You have come to the right place. I think you will find alot of help in understanding and treating this illness, as well as support from alot of people just like yourself. I'm sorry you're going through this, especially with your husband gone, but I'm glad you found this site- it has been a tremendous help to me, and I hope you find the same support. - Ellen

mom4cem- yes, I have a strap and it transmits to the wristwatch. It's a Polar F5, Fitness Heart Rate Monitor, and it's accurate up to +-1%. That's a good suggestion, I will contact the manufacturer. I don't know what is "normal" and I don't want to call my doc for this and have him think I'm a hypochondriac.

I recently got a heart rate monitor and have been wearing it throughout the day to monitor my activity level. What I found is that several times a day my HR drops to 30, or goes up to 180 for only a few seconds, then returns to normal (70-120). I was just on the phone (relaxed) and it went up to 228! I have no sensation when these events occur, it can occur during the most ordinary activities and has no pattern. My question is, is this normal or should I contact my doctor? My PCP doesn't seem very knowledgeable re: POTS, and the cardiac EP who diagnosed me said he doesn't need to see me anymore (since I'm doing everything that can be done for POTS). I would really appreciate some input from your collective knowledge on heart rate, since I have no understanding of this! Thankyou so much---Ellen

Friday, my story is the same as Dawn's - I have never regretted for a minute having a hysterectomy. I have had POTS since mid-thirties, just diagnosed last year at 50. I think what Dr. Grubb was saying was, POTS doesn't necessarily go away when you go through menopause (don't expect a guaranteed improvement when you turn 50), and can even get worse. This illness is so unpredictable. I actually feel as good as before the hysterectomy just without cramps, bloating no moodiness- I love being period-free! I hope you consider this option with your doctor- Ellen

Thanks for the input - I guess that flyer was just another advertisement to drum up business. I really wish I knew how to find a new doctor- the search requires too much energy, which I'm short on presently. If it weren't for this website I would never have been diagnosed with POTS, I guess I should be thankful for all I've learned here. More than all the years of doctors telling me how "healthy" it is to have low blood pressure!

I got a flyer in the mail from the Mayo Clinic in Scottsdale, AZ which interested me with this quote, "I was finally diagnosed with something that many other doctors could not diagnose for me. I finally got an answer." Does anyone know if they have any doctors who treat Dysautonomia? I don't feel my doctors know how to treat this illness, and I have no idea how (or the energy) to find one who does.

Nadine: I do not know if I would have figured out the relationship with food if it had not been for my Vanderbilt experience. I learned that carbohydrates were particulary problemetic. I really noticed a difference when I went on the LOW CARB diet with my hubby (to support him, he lost 50 lbs). I felt so GREAT. I think maybe I'll try it again. Any thing that helps improve my energy level!

Jacquie, my husband took Reglan when he had nausea for years, until we found Emetrol syrup(comes in cherry or lemon, both very good). At any drugstore- of course, you should ask your doctor. I hope you get some relief. -Ellen

Dear Rebecca, YES I definitely recognize the strange mental fog you are experiencing. I was afraid I was getting Alzheimers for a while (who knows). I was also a multitasker (I designed software before I had kids) and now I can't even USE the software properly. As for your bowel problems, I think you should discuss it with your doctor. Why wait until it's progressed any further? Just my humble opinion, maybe someone else here has more to offer, but just the STRESS of that adds to your illness, and we need all the support we can get. We're all dealing with different symptoms, and I appreciate your willingness to share this very difficult one with us. -Ellen

Dear Rebecca, I very much understand your feelings - most of us have gone through the same things. Hopefully the tilt table test will give you a definitive answer, and your doctor can proceed from there. Wishing you well tomorrow- let us know how it goes! -Ellen

Well, I got a heart rate monitor about a month ago and have been using it several hours a day. I find once or twice a day my heart rate drops to 30-45 (low), or 220-245 (high), for several seconds, then returns to normal, 70-120. I know only a doctor can diagnose me, but is this anything unusual? Does anyone here experience this?- ellen

Albuterol makes me tachy also- I take Clarinex everyday and haven't had asthma. When I DO need the inhaler, I rinse my mouth out vigorously afterwards, and brush my teeth to keep it from being absorbed in through my gums. I find this decreases the tachy.

Jaquie, Here we are. When you need friends who understand your illness, come to the Dinet website. I'm sorry you had such a disappointing evening, but you're not alone. I get alot of comfort reading the posts of all you other "potsies". -Ellen

Rhonda, please keep us posted- it's so exciting to find a doctor who can look at this illness with a fresh approach. wishing you success, - ellen

Yes, I just went to the medical supply store and did as Tearose suggests. They were very helpful and did explain how to put them on. I'm getting used to the tightness. but it's only been afew hours .

I just got in from buying my first pair of JOBST compression hose (on TEAROSE's recommendation). I went to a medical supply store and they talked to me for awhile, measured me and recommended 15-20 to start with. I am wearing only one because I want to see if the other leg feels worse-we'll see. So many people here recommend them, it's worth a try!

Tearose, you're kidding, I can go to the sports store and buy a heart rate monitor?! That's a great idea. Thanks for the suggestion. I dont use compression hose, I live in Arizona, 100+ degrees, (it's inconceivable). My cardio said I'm doing everything that can be done,so no need to come back. When I told him I stay ontop of the current research on the internet, he said, then you know as much as anyone of us.

Michelle, I will be out of town the first week of July, but would still like to participate in the auction. Is that the only time it will be available? Maybe I'm the only one, but I thought I would ask, since that is such a big vacation time. thanks, Ellen

I don't feel like passing out but I do feel short of breath, so I yawn ALL the time, even when I'm very interested in something. Especially while I'm exercising (at Curves) I yawn (and get all kinds of comments)-it's as though I can't get enough air. It's so embarassing because "normal" people don't understand what it's like. It's nice to have someone I can relate to.