goldicedance

Putting on my fake doctor's jacket and basing my response on my experience and the explanations on DINET: "Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising." On the other hand, Neurocardiogenic Syncope is characterizeddrops in blood pressure. Unfortunately, some people have both. Lois

Thanks for the update. I continue to keep Melissa in my thoughts. I do hope that the doctors can resolve the current crisis and can come up with a plan going ahead so that she can soon be home with her family. Melissa--consider yourself hugged! Lois

Also an increased risk of certain breast cancers.

Em, The trip sounds so very long. Is it possible to fly? Is it possible to break the trip into 2 days to give you some rest time? Just some thoughts.... BTW, the Wheaten pups are too cute for words. Do they turn white as they age? Lois

Ditto to what Em says. (BTW, Em, my husband has a Buick Rendezvous and he loves it. He prefers it to my Lexus SUV. That's fine with me!) As to why IV saline seems to work (from what I have been told), is that the IV fluid goes into your blood stream. On the other hand, when you drink volumes of fluids, you urinate volumes of fluids. There is some system in your body that helps prevent fluid overload to prevent sodium imbalances and to prevent you from bursting at the seams. This is not the most elegant or scientific way of describing the phenonomenon. Lois

I would say that's pretty normal response. Lois

Have you gotten your results of the blood tests? I hope that you got good news. Lois

Michele, Congratulations to you! You should be so proud of yourself for this accomplishment. The book sounds very interesting. A number of decades ago, I lived and worked in Geneva for 2 years. I did feel different when I was working and interacting in French than when I was with American friends. Even my dress style was different. Many years ago, I saw a film about managing a cultural diverse workforce. I was fascinated by the concept of time and how it was handled by different cultures. I would love to read your book, but the price is prohibitive. Do you think public libraries will have it? Could you loan me a copy? I think your book should be quite valuable to politicians as the debate about immigration continues. Good luck, professor! Lois

Emily, Thanks for sharing this sad news with us. Melissa, You know I am thinking about you. I am praying that you will be back to a stable baseline real soon. You continue to go through so much. You are so courageous! Lois

Hi, Eliza. I am so sorry that things are going rough for you. I do not know what high CO2 levels mean. Are these levels high based on arterial blood gas tests? These tests are painful. Have you seen a pulmonologist? That's all from me. Good luck. Perhaps someone else can shed some light.

So sorry you are experiencing these problems. Have you seen a pulmonologist? A pulmonologist could probably help diagnose your problem.

If Zoloft has helped with the headaches on such a low dose, that is good. Migraines are NASTY!

Sophia, I had the same reaction. Lois

Jacquie, Sorry you do not think Zoloft is helping and maybe even aggravating. You are on a very low dose of Zoloft. It took a long time for me to reach the dose that seems to help--250 mg once a day. My internist was always concerned about the dose. However, the Mayo Clinic informed me that you have to be on a very dose of Zoloft to get a benefit. He had no problem with the 250 mg. My migraines are now pretty well controlled with Zoloft and Lyrica. Lois

I am actually surprised that I don't see any (or few) people who has tried Sandostatin. I am probably the only one active on POTSPLACE who has tried it. I got excellent results for awhile until I developed hypertension plus gall bladder disease. I sure hope that more research is done on autonomic disorders. Lois

Hi...Are you sure it was thyroid? Could it have been parathyroid? Lois

I have gotten better control of my symptoms adding Labetolol with Mestinon, et al. I tried others, but Labetolol works the best for me. It was almost like trial and error. Good luck, Lois

My doctor is a pulmonologist, who has been keenly interested in Lyme Disease since the early 1990's. Her practice is not a Lyme practice. Her practice specializes in pulmonology and critical care medicine. The group practice used to take most insurance, but then stopped. She felt she could no longer devote the time necessary to evaluate/treat a patient and still have an economically-viable practice. Nothing is as bad as going to a doctor who can only devote x number of minutes to you and then starts looking at the clock or who gets interrupted by an assistant and when the doc returns, your time is up. As Nina has said, many doctors have opted out of the insurance network. During the past few years, that has been the case with my internist, cardiologist, gynecologist, surgeon, opthamologist, ear, nose, and throat, etc. I have had to evaluate my choice of doctors and go out of network for the doctors who are most important to me. Doctors practicing within a hospital generally accept insurance. Several years ago, my POTS doctor gave up private practice altogether. He was in a teaching hospital--splitting his time between teaching, clinical reseach, and patient practice. As you well know, the time it takes to evaluate and treat someone with POTs is certainly a whole lot more than the time it takes to evaluate a patient in a pacer clinic. Bascially, he was not a "profit-center" for the university. It is indeed a sorry time for medicine and patients.

Re: anti-tatoo--I can think of two reasons why he doesn't approve--(1) personal beliefs and (2) chance of getting infection. Why take the risk?

I have a doctor in suburban Maryland (Chevy Chase) who has a keen interest in Lyme and other tick-related diseases. She also has developed a pretty good understanding of POTS based upon her treatment of me. I referred someone else on POTSPLACE to my doctor and was extremely pleased. The only problem--she accepts no insurance.

Lindaj: I can relate to the gall bladder aspect. I do get diahhrea really bad. That was actually the first symptom that I had with the gall problem sludge. About a month later, I started Mestinon and the problem really increased. I tried pancrease at meals. I didn't notice any difference. I also tried cholesteramine. No difference. At this point, my solution is to always know where the ladies room is when I am out--if you get my drift. Lois

You can get sublingual B12 - put it under the tongue and it dissolves. That's what my husband has to use because of gastric bypass surgery. As a result of the surgery, his stomach does not absorb B12. Lois

Good luck! Will be thinking of you tomorrow morning. Speedy recovery to you! Lois

Welcome aboard! Glad you dropped in from cyberspace to join us. I can see you are going to be a welcome addition based upon your first post. Your response made me smile! Lois

I take it early in the day. The doctor told me never to take it after noon. I take it first thing so that it wears off before bed. I had before taking Provigil a hard time falling asleep and staying asleep. Still have the problem. Lois