futurehope

My 80 YO Mom had an ERCP. She had to. She had sludge from her gallbladder causing pancreatitis and the ERCP was used to clean out the duct. She came out fine.

The only other time I've heard of what you are describing is from someone who had gone to the "dizzy" clinic at Hopkins (I'm from Baltimore) and they had to retrain them because they had some malady with their inner ear. Other than that, I can't help you. Sorry about your problems.

Welcome home, Melissa, and may your healing be speedy!

I'm sorry for your frustration in not fitting the "typical" POTS case. FYI, my two worst symptoms are orthostatic intolerance (feeling poorly when sitting or standing) and fatigue.

Yep, my 81 YO Mom is on it for the long-term and it works for her. I'm glad you're feeling better.

I've had root canals, fillings, etc. with the epi-free numbing agent. No problems.

I have no proof of anything but I have a theory that in my case an anti-depressant triggered my POTS. I suspect that I had a predisposition, and that it was triggered by a prescription med. Remeron No proof. Just my theory.

Is there anyone else beside your parents who can take you to the doctor in Sao Paolo?

To add to what everyone said, my mother got depressed to the point of being hospitalized because of Beta blockers. She's now on one that she is alright with.

I first noticed debilitating symptoms at 51 years old. So much for your cardiologist's knowledge. I believe some doctors could learn some things by reading this forum.

There's hope in the world! A neurologist who UNDERSTANDS and can educate others. Too good. God bless you Karyn.

My experience with this was negative. The enzymes really burned me and gave me worse heartburn. The "protector" did nothing. I went back to Prilosec as that worked. Good luck. It sound really promising and logical. It just doesn't help heal you. P.S. The only enzymes I could tolerate were the prescription enzymes they give to people with pancreas problems. These do not break up until they are past the stomach so they didn't bother me. The gastro let me try them. I'm not sure they did anything but give me loose stools, so I discontinued them.

When you are describing your need to lay down again, is it sleepiness or profound weakness (can't move), or profound tiredness(standing up is too much for me to handle)? Have you taken your blood pressure when you are feeling like this? Is it hot outside (with bad air quality)? Has this ever happened to you in the past for any reason? I know I respond very poorly to heat because my adrenal glands do not respond well to stress. I hope you get answers soon.

If it were me, and the doctor gave me a "one-time" pill of trazodone for sleeping, I'd ask for a second pill to "test" BEFORE the trip to see how you react. I've used 30 HG compression hose during a long flight, and I still got a clot in my leg, though not in a deep vein. So, I suppose I'll always be wearing them during flight and taking and aspirin with them. I do not know a reason why you would not wear compression hose unless you find them very uncomfortable. Have a great trip!

If I were you, I would seriously consider that it is the Nexium causing your new symptoms. I know from personal experience. Also, I do not know where you were reading side effects, but if you read the full insert put out by the drug company, you're side effects ARE listed. Secondly, you are taking other medications, and the combo could make the side effects worse. For me, Nexium sort of acts like a beta blocker, so for me, I probably could not take all the meds in the same day. Thirdly, would your doctor allow you to take an over-the-counter brand of acid reducer? It might have less side effects. Fourthly, I would not take another drug to counteract the effects of a combo of drugs you are currently taking. I would want to know firstly whether the addition of Nexium to your daily intake has created a new set of symptoms. You are the one who knows yourself best. Fifthly, I have my suspicians that because the Nexium cuts acid, that CAN affect the absorption of many things, from drugs to nutrients. That's my unadulterated opinion. But that is my belief from my personal history and from years of taking PPI's (proton pump inhibiters). If I were you I would try skipping the Nexium for a day and see if you feel better. I've done that. Unfortunately for me, I DO need the Nexium, or my GERD gets worse. P.S. The powers that be will probably delete my suggestions because we are not supposed to be giving medical advice. We are not doctors.

To answer your question, "no". When I had official TTT tests, in both of them, I was told to not eat before the test. Plus, I was emotionally stressed by the process. These two considerations definitely swayed my body to show an increment of 30 BPM upon upright posture. This has not always been the case during my regular neuro visits.

Amby, Check out this website. http://www.medicinenet.com/sjogrens_syndrome/article.htm

Yes I do, the soft Bausch & Lomb daily wear - usually only when I go to church or to meet others. I tend to throw them out after using them twice. Do you have Sjrogen's syndrome? It'll dry you out.

I, for one, feel worse on drugs and I despise withdrawal from anything, so to answer your question..... I tend to "put up" with whatever horrible symptoms I'm having instead of putting up with the side effects of a drug. Now, I am not saying this is the correct choice for everyone. Some people here definitely see the benefits of whatever medicine they are taking and they stick with it. You need to make choices and realize that there is no magic cure, just trial and error. I hope you feel better real soon.

Steve, I think it is difficult to know sometimes what triggers a setback. At other times, it's obvious. One thing you can know for sure is that things change. "I was fine until I laid down for a nap (but shouldn't that have the reverse effects of standing?)." Nope. One can feel really bad after a nap. The ANS seems to malfunction under any circumstances. We just notice the effects more upon standing (or napping ). Concerning the nap and sleeping: I've come up with a theory of my own. I think that there is an ideal amount of sleep my body needs. I was told that for me this is eight hours. My sleep doctor figured this out by looking at my two month sleep log. Yet, due to my ANS issues, I often have low blood pressure and I know I have blood pooling which I believe get worse the longer I am in bed. Because of the way my body is, I FEEL like I need more rest and more sleep when in reality, it's just a reaction to some stressor or my low blood pressure. In other words, 8 hours of sleep is all I need but that is NOT how I feel. Consequently, I'll stay in bed longer than eight hours, or I'll take a nap, both of which make me feel WORSE. It's really tough to stay on a schedule and not get "too much sleep". I know. I'm in the middle of a battle with myself right now. The intense heat we have outside here in Baltimore makes me feel more lethargic. But there is no question in my mind that if I stay closer to the amount of sleep my body really needs as opposed to what I FEEL I need, then my POTS symptoms decrease. What to do? Recline but do not sleep when the "tired" episodes hit me. And get up at the same time each day with no longer than 8 hours in bed total. Easier said than done. I hope your setback goes away soon. Try not to get too down about this since thing will change.

Sounds to me like your body has trouble adjusting to the "change" from motion to stationary. Maybe you need a "cool down" where you just move arms or legs a bit before going totally stationary. I bet with time, your body would adjust. Sometimes we have to go through a period of adjustment when the body learns the new activities we are doing. I know when I had dizziness (before POTS) the Hopkins clinic where I went for it had me doing exercises that actually made me dizzier. But with time it diminished. Other than that, I assume you've had your heart checked out and it is okay, right? I'm glad you were able to do some walking. It took me a while to get used to everything I do.

If I remember correctly, the doctors like Buspar better than a benzo because you can take it and stop it at will. With the benzos there can be a rebound effect of being even more anxious until you take the dose your body is needing. I tried Buspar and didn't like something about it, but I can't remember. It was so long ago. I hope you find a solution soon. Anxiety is no fun.

Dionna, Way to go! It sounds like you are doing a good job on your new diet. I'm sure you feel better about yourself knowing that you are getting good foods into you and eating every few hours. I'm glad you're trying. Anything you can do to feel better - that's the idea!

Dancing Light, What is a formal assessment of sleep hygiene? I do not know the official answer but I can give you a "guesstimate" since I've seen a sleep specialist. The sleep specialist had me keep a diary for (I think) two weeks marking down every time I fell asleep and whether or not meds were involved. This was prior to his visit. That way he could tell how many hours total sleep my body seemed to need each day. He also asked me questions as to HOW I go to sleep. The upshot was, he did not want me to take naps; he wanted me to sleep ONLY in my bedroom (no reading, or watching TV); he wanted me to keep to a regular schedule as much as possible. I can't remember the other stuff. Anyhow, once I got the sleep study done, they could tell I had restless leg syndrome also. Hope the info helps and I hope you get the meds you need approved.

Welcome Dave. I hope you get some answers here on this forum. Sorry you have the ailment though. Dave, Cheryl, Boy can I relate. I was a computer programmer for years. Once this POTS hit, it would take me so much longer to think and figure out bugs in programs. Also, I was feeling so bad, I wanted to avoid meetings and people. Unfortunately, I pushed and pushed through it for about 1 year, even going part-time until I knew I could not continue. Also, I enjoy being around people but now that fatigue is my constant companion, not anymore. At my worst, I don't want to be around anyone because then my over-tired brain would have to function and I just do not feel like thinking or relating to anything. Anyhow, welcome again. It's great knowing there's a bunch of people on this forum who know what you are talking about.