futurehope

I always do this, except for antibiotics. I'm sensitive to any changes. And my family does not know that I do this because I do not want to be explaining things to people who don't live in my body. I would have no problem telling any of my doctors. They haven't minded me doing this.

I sought out a gynecological oncologist when my regular ob/gyn was scaring me into having a hysterectomy and telling me I could have cancer. They are more qualified to diagnose. They have more training. I still see him despite the fact that I did not have uterine or ovarian cancer. I do not know whether there are "generic" oncologists that treat different cancers? Anyhow, I would think you should try to see the most qualified person possible, right? Try to reign in the fear, and do whatever needs to be done to get well. Wishing you healing thoughts.

BTW, I can do calf muscle exercises (using ankle weights), while holding a dumb bell and using a stair stepper. I've figured out some exercises after reading postings on this forum. You can do exercises on the inner and outer thigh muscles using ankle weights, as well as your butt and the rear and front of your legs. The weird and difficult thing is, sometimes I'm too exhausted to do anything. Sometimes I can "push through it" and be fine and sometimes I can push through it and feel really bad like my brain stopped. It's really difficult to tell what you should push through or not. I think I'll use my heart monitor around my chest as a guide and check my heartrates. This illness stinks. If you don't do anything, you feel bad. If you do anything, you have to watch it or you'll feel bad. The one thing I learned is one day is not necessarily connected to the next. I've gone to bed so exhausted that I was convinced that I'd sleep though the next day. Then I wake up the next day and find that I'm "okay". Usually I have some level of POTS headaches. Sometimes I push through it and I'm fine. On occasion, I've pushed it into a full-blown "brain rebellion" migraine. I really have to watch it when I'm pushing to sit or stand in hot humid weather. Like I've said before, the unpredictability of this is such that I find myself very inconsistent in what I can commit to doing. Who knows how I'll be feeling when I'm supposed to be-------? Fill in the blank. I'm always pushing and doing the best I can. I frequently lay low the day before a "big event" in the hopes that I'm well rested and will be able to handle it better. I guess I'm helping the situation when I do this?! Okay, enough rambling.

I had been exercising my entire life. So much for POTS meaning I'm "out of shape". When I had last gone to the gym for workouts, I had been using 5 lbs free weight dumb bells, but higher amounts on the machines. Once POTS hit, I stopped doing anything as I had no idea what was happening to me and I was frightened. I started up again with 2 lbs weights, then 4, then 5lbs for about 2 years, and now eight lbs. I may stay at this weight for years. It depends on how easy it becomes. I do as much near the floor as possible except for sitting doing arm curls. I do not push myself. I just do a little as often as I can. (I hate to see anything "wiggling", and as I get older I tend to lose muscle mass unless I exercise.)

I do some of that with two 8 lb dumb bells. Over the head, pectorals. You know our ANS doesn't work great supine either, at least mine doesn't. It is not as much stress as being upright, but things are still not working perfectly nontheless.

"What's the best way to regain my independence back?" At this point, an important question to answer is "how do I regain my health?" You can be more independent when it becomes obvious that you are well enough to handle it. By reading your post, I do not know enough about your day to day activities and what you need help with. But I have to admit that if my daughter were a fainter and she took a walk towards a pool by herself, I would have been upset. Do you think it was wise of you to do that, being that you admitted your walk was towards a pool? I suggest that you have a talk with your family and discuss options so that they will feel more comfortable with you doing anything by yourself. I do not know your health situation and maybe, at this point, it is better if someone else were around. Maybe your objection is that you are feeling like they are treating you as they would a child with no ability to do anything? Is it their attitude towards you that you are objecting to? Or, are you having difficulty realizing how needy you've become in a short amount of time? I hope you find ways to improve your health. You are very blessed to have such a caring family. Some people wish they had that. They have to learn to adjust to your changed health as much as you do. When they see what you are capable of, they may feel more secure letting you do things on your own without assistance.

I have it. The latest script I got was for 2 pills 4X/day of xifaxin. That's a lot of antibiotic. The things I noticed after treatment: No crampy diarrhea attacks which I used to get after eating too much sugary foods ( I guess because the sugar helped the bacteria reproduce in my gut). Less bloating after meals. Whether it comes back or not??? I've assumed (maybe incorrectly), that I will always be subject to SIBO, and after going through 3 or 4 courses of antibiotic with three months in between, I decided I did not want to be taking that much antibiotic, that frequently. I was afraid I'd become resistant or something. Maybe I'm wrong. I would notice the bloating coming back before the three months were up anyway. And I can't stay on antibiotic all the time. What I feel more comfortable doing is having the script in the house for use, but I take one probiotic in the AM and one probiotic in the PM daily. I've been doing moderately well with that but I have the script in the house if I notice any worsening. This is a side question: Anyone notice that you put weight on after treating the SIBO? Supposedly, if you have SIBO, you're not getting the nutrients from the food like you should, and if severe enough, you would be malnourished.

My observations: I feel better (have more energy) when I do nothing with one big caveat. If I have been doing nothing for too long, , like due to illness, then my stamina takes a nosedive. I have been known to push myself to the point that I feel my brain has stopped. I feel shaky, and I can barely put one foot in front of the other because my body is screaming, "I can't" and I ignored it. I have found that even if I have an episode like that, the next day is a new day and I may be able to handle what I couldn't the day before. Forget about "runner's high", or "feeling better". I have always wondered why people felt better from exercise and I never did? Now I know. POTS. The toughest thing to deal with is the inconsistency - good some days, bad some days. Are we hurting ourselves by pushing? My uneducated guess is, I doubt it, unless I'm injuring some internal organs from lack of circulation? Truthfully, at this point, I don't care. This is my life. I'm trying to live it as best as I can under the circumstances, and if I quit doing things every time I felt poorly, I would be doing nothing---ever. Anyhow, that's just my opinions.

I love the way benzodiazepines make me feel more relaxed. My experience is that the longer I took them, say for 3 weeks or more (daily), the less they had an effect, and the more I had a withdrawal if I discontinued them. But I have nothing but good to say about their ability to help you sleep or relax in difficult situations. Now, if only I could keep taking the stuff and have the same effect no matter how long I've taken them..... Anyhow, that's been my experience.

To put your reactions to changes in Mestinon dosing in context.... I was given the liquid form of Mestinon and a syringe to pull 5 MG of the liquid into it. It was a minute amount. It gave me a horrible headache and I couldn't wait for it to wear off. 60 MG's would have put me on the floor. So, yes, any amount of anything changes our "homeostasis" (set point). That's my opinion.

Hi! I, also noticed less exercise problems if I ate a "Balance" mocha bar before my daily walk. You mentioned that you ingested the coffee after. I found it the most helpful to ingest the bit of caffeine before the exercise. I never knew what the reason was, but I attributed to two things: 1) the caffeine must have helped with the internal mechanisms of my OI, 2) the protein bar helped keep my blood sugar stable and prevented an "after-exercise" crash. The above are purely conjecture. I did mention it to my endocrinologist and told him I couldn't keep doing that as I was putting weight on and refused to let that continue. He suggested I make my own sugar-free protein/carbohydrate snack to eat before exercising (minus the sugar for less calories). Anyhow, I'm glad you noticed something, and I believe your coffee idea would work for me too except that coffee contains way too much caffeine for me. I do well with less, like in a candy bar. Obviously, the stimulant is helping you with your exercise intolerance.

I am getting the distinct impression that the above article references YOUNG people with POTS and ignores the many older people that have it. You can find several older POTS patients on this forum. I feel misunderstood and ignored when the medical community looks at this as a young-person illness. I wish they would acknowledge us older folk. Hopefully, I got the wrong impression from the article.

What does your doctor suggest as the first priority? It seems obvious to me that unless you are in an adrenal crises, you would have to start by getting one set of hormones up to snuff, because doing both at once be totally confusing, don't you think?

Have you considered going to a doctor I hope you feel better soon.

Actually, that's a good question. If you have apprehension, your doctor can order a venous doppler on your leg vein to see if the leg vein is open. I, for one, would have difficulty telling a "charlie horse" from a "deep vein thrombosis". Maybe you can go to a walk-in clinic? If you do have a clot and it is in a superficial vein, they are not as scared (though it needs to be addressed) than if it were in a deep vein. I have a tendancy to get clots after long trips in the car or an airplane. One doctor suggested I take an aspirin before each trip to prevent clots. I haven't really done that. I hope you feel better soon.

I second the notion that IVIG should not be the first route of treatment. If you read up on it, there can be side effects to the IVIG, and it is very expensive. If indeed they find an autoimmune disorder, I don't even think that a doctor uses IVIG as a first line of defense. Proceed with caution is my advice. I second what the posters above me said.

I got my notes, and hashed out a few things with him on the phone. He now realizes I will be keeping tabs on him since I am very aware of everything he said and wrote. I do believe he has changed some notes. Frankly, as long as I can get general care from him, that is all I need. I will not allow him to write or insinuate any falsehoods and he knows it. I've lost my fear of him. My specialists are really the ones who treat my underlying conditions. I'll be careful, but I do believe he will try and work with me now. I wanted to make sure that there was nothing on the Hopkins notes that would prevent others from seeing my true medical conditions, or laid the cause of them on a mood disorder. I am now convinced that will not happen. Phew!

What's PC? Is that a medicine or a pulse? Yes, we can overreact in the hormone department, and our pulse can go higher.

Different doctors have differing opinions as to the "number" that they want your TSH to be. Was that the only test they did, or did they do a Free T4? You are at the high-end of normal and may benefit from additional hormone, but be aware that POTS people are sensitive to any changes to anything, and my doctor always tends to go real easy when changing my dosing schedule, knowing that I overreact to everything. So, to sum up, some doctors may want your TSH to be a bit lower, whereas, some are uncomfortable changing anything when you are in the normal range, although at the high end. There is no clear cut answer and you will have to discuss this with your doctor. Best to you.

As some of you know, I tried a new internal medicine doctor and was less than pleased. If I never go to him again, how do I find out what he wrote in his files? Unfortunately, he is part of the Johns Hopkins medical system, and his notes are everywhere in Hopkins' files right now. Should I speak to him? Should I forget it? I cannot see another Hopkins internal medicine doctor because they will see the current notes from the doc I do not like. Actually, any Hopkins doctor will have access to his notes. What would you do if you were me? Any input would be appreciated. Thanks in advance.

All the time.

You are downright funny! Thanks for the laughs. Yeah, I really like the ones who admit they don't know. They are the "real" thing. You're right, I'd feel much better if my doctor was real, but I need a break from MD's right now, and I figure I'll just use him for the flu, or sore throats and for my scripts. Other than that, he can go back to treating his high blood pressure, high cholesterol patients, and I'll go back to my docs that understand. The "psych" questioning really got "under my skin." Can you tell? That's why it gives me pleasure to call him names. Not nice. I know. He's just trying to look important and feel important. I hope he had a fun time dealing with me. I'll admit, I'm not shy. I speak up. And some doctors are not used to patients having opinions and expressing them. It scares their socks off! You know, I believe he had a personality disorder! I'll call it "excessive pride" covering for "insecurity". There. That felt good. Take care, you all. I knew you'd understand.

Didn't Realize How Hard It Is To Go To Dr's By Myself It sure is. I just wrote my rant about my experience talking to a dimwit today. Yes, it's tiring. There's a lot of explaining we have to do.

I'm very tired right now from spending 1 1/2 hours talking to a dimwit, errrr, I mean Internal Medicine Doctor. I had to explain to him half my tests because he probably had never seen them before. I carry all my testing with me. Then he spent time trying to show me how much he knew....yeah, right. He wanted to write one of my diagnosis as postural hypotension. I said, "no" that's not what I have. I let him write dyautonomia, which explains it better. He spent too much time trying to prove that I have a diagnosis of depression or mood disorder. (I think I was developing this disorder as I listened to his ignorance - lol) I lost my patience and said..... "You can write down what you want (mistake), but I have had an infection in my tooth for 4 months, I'm hypothyroid, and I'm on a strong antibiotic for the second time which is taking its toll on me." "If you call my exhaustion "depression" or "mood disorder" I believe you're being inaccurate." You know what? Dealing with the likes of him can bring on a mood disorder. Then he asked me if I had a gun in the house? I said, "What?!" Is that a question they ask if they think you or someone in the house is depressed? I said, "Nobody ever asked me that before." Anyhow, I wasn't expecting much. I just wanted someone close by to be able to treat the flu or a sore throat and prescribe medications I'm on. I'm beginning to realize how difficult it is to describe the many malfunctioning body systems I have. It's tiring to go over all this stuff. My favorite doctors are the researchers who are interested in their particular specialties, who can relate to my illnesses, but can also look me in the eye and say, "I don't know". It's the jerks, like I had today, who try to prove how much they do know, and then, inadvertantly, make themselves look foolish in the process. How arrogant, and insecure! Obviously, I have no respect for the dimwit I saw today. Real people, who admit they don't understand instead of trying to puff themselves up, are more to my liking. I know all you people on this forum can relate. It just wears me out dealing with the stupidity. Thanks for letting me rant. It feels good to talk to people who "get it". Have a blessed day, y'all!

I am very happy for you. Thanks for sharing and may you have many more wonderful days ahead!