futurehope

He diagnosed me. He's knowledgable, and interested and keeps up with the latest research. He's willing to try things I've mentioned to him.

I frequented this forum much more when I was new to POTS. It's been approximately 9 years since my diagnosis. I prefer to live out my life to the best of my ability. I learned a lot on here to help me. To that end, I prefer not to frequent this forum as much any more, because I prefer to focus on other things. That's my choice. But, I did need to hear more about this ailment in the beginning, because I was scared and uninformed.

Do you guys mean UMDF.org? MD is muscular dystrophy.

Toddm, Has your treatment for mitochondrial disorder helped you? What have the doctors suggested for you as a treatment?

In my case, once the weakness has set in, I need to rest. That's it. Obviously, it would all be easier if we could prevent the weakness in the first place. In the past, during vacations, when I've wanted to remain okay, I've used the motorized scooters available in the stores. I'll us them if I know I'm not feeling great and when others with me need to stand and browse. I cannot stand and browse. I can also use a seat cane in the above. Sitting upright for too long (like waiting at a doctor's appointment), takes everything out of me, and I need to recover. I haven't quite figured out how to prevent this, though. On the whole, I think other "normal" people would be surprised to learn the level of disability I deal with on a daily basis, especially since I do not talk about it. (I found out that talking about it does nothing, unless, of course, I need to talk about it to prevent a medical "crises").

They need to stop using "Grinch" as part of the syndrome name. It's an ugly and unfortunate name. There is one thing I can agree with in his study, and that is that the exercise must be incorporated into daily life indefinitely because I'm not "cured". Whatever doesn't work, still doesn't work. It's just that I'm compensating with exercise. When I stop exercising for any reason, illness, surgery, laziness, I'm back to square one, though I'm hoping that re-conditioning takes less time.

Congratulations! What an accomplishment! I spent from January to three weeks ago, building up my muscles and my stamina. Of course, with all that, I was doing relatively well. Then..... I just had gallbladder/umbilical hernia surgery and I'm dreading starting all over again. Wednesday will be the first day that I will slowly work back to some semblance of normalcy. How easily I lose what I've gained, but the outcome is worth it. Carry on.

Well, from what I was told, I was given anti-nausea meds before coming to, as well as after. Each time the nurse injected me with something else, I felt worse. My only recourse was to live through it. Fortunately, about 5 hours post-surgery I started to feel like a human. Yes, I'm glad I had my gallbladder removed. I just hope I never need any other surgery.

Post-surgical update: My cholecystectomy/umbilical hernia repair went fine, but........ For me, coming out of the anesthetic was a nightmare. I felt deathly ill, like I needed to throw up, my head hurt severely like a migraine, and I was extremely sensitive to any motion of my head. The nurse kept telling me to take deep breaths, I guess to stop the quirky machine from going "off" because I had low oxygenation. Finally, I was given supplemental oxygen. Honestly speaking, I hope this is the last surgery that I'll ever need. I felt so bad in recovery that I prayed for death. Can you imagine, death seemed like a welcome alternative to what I was feeling? This kind of reaction happened to me 13 years ago following a 15 minute D&C. This was a one hour operation. The only thing I can think of doing is to get my surgery/anesthesia reports and to beg the doctors not to give me any stuff listed on there. I already know I'm overly sensitive to meds, so this sensitivity to anesthesia doesn't surprise me. Is there anyone else with POTS out there who has had a severe reaction to anesthetic?

The way I deal with my condition is that I realize my body is malfunctioning. Having a malfunctioning body does NOT mean that I won't have good days. I have many good days. Sometimes, there are factors making it a bad day, and I am reminded that my body is malfunctioning. But, since I do not look at myself as cured, I can deal. I suspect strongly from reading your post that you will have good days again. After all, you've had them before.

I'm going in for a gallbladder removal and umbilical hernia repair Tuesday. The nurse from the hospital called to go over medicines, illnesses, past surgeries, etc. I started going into my usual "song and dance" about Postural Orthostatic Tachycardia, speaking to her as if she knew nothing. To my surprise, she said, "Oh, we get several people in here with POTS." "We're familiar with it." Wow! They've come a long way since 2003 when I was first diagnosed and nobody had heard of it. It made my day!

I'm improved after 4 months of exercising. I started January 5th, 2011. It has been a long road getting to this point. I have had several tests done to rule out possible causes of my POTS. I have had POTS approximately 10 years. I have several different specialist treating different parts of my body: urologist, allergist, gastroenterologist, gynecologist, neurologist, endocrinologist, all of whom contribute to my well-being. The people on this forum sharing, and discussing "what helps", and the Levine exercise regimen, motivated me. I will continue to view exercise as necessary to me as brushing my teeth. I would lose much ground if I stopped. Of course, if I must stop exercising due to some unforeseen circumstance, I will stop. But, until then......with God's help, I forge ahead. Oh yes, I deliberately make myself sit vertically for 30 minutes/3 X per week. I may begin doing standing exercises against a wall as well, but I'm actually doing satisfactorally in standing, and there are only so many hours in a day, so... Folks, there is hope. Believe me. This medical condition has been a major challenge. I am doing the best I can with what I have.

A tip from one with experience: If you wear compression hose daily, consider the open toe variety. Why? The cold water wash, drip dry regimen of laundering does NOTHING for killing toenail fungus. If you have the open toe variety, at least you have the ability to wash/dry your socks (not the stockings), enough to kill the toenail fungus.

Hi, I am aware that you are unable to share Dr. Levine's exercise protocol. But, are you allowed to share the percentage of maximum heartrate that he allows you to strive for? IOW, are you working at 80% of maximum of heartrate for your age group (that is the normal aerobic target), or 65% of maximum heartrate for your age group (useful for fat burning)? It may or may not be 65% for fat burning:I'm forgetting. Or, are each of you specifically given a target heartrate depending on initial screening?

My two cents..... I've had much mercury amalgam in the way of tooth fillings, in my mouth, for years, starting in childhood. Slowly, I've now been getting them either crowned or replaced. I've had one implant. I have no proof of what I'm about to say, and my prior dentist would have totally disagreed....., but here goes.... I am sensitive to chemicals and medicines. I do not think, being the way I am (sensitive), that having mercury in my mouth, even in an inert form, is beneficial to my health. Even after my crowns and implant, I will still have about 5 teeth, 4 of which are in the upper arch, that will contain mercury amalgam fillings. Since the upper arch is a bit more tricky in that the teeth located there are closer to the sinus cavities, I don't know how willing my doctor would be to work on those fillings and replace them unnecessarily.

My opinion..... I'm not cured. I'm more functional. Someone in a fitness center once said to me, "You brush your teeth every day. I look at exercise the same way. I need to do it." I tend to see exercise that way, as highly necessary, but.... As for me personally, I will not exercise every day. I take Sat and Sun off. And I also noticed that having POTS, I can regress or fall back to "square one" more easily than before. And, I have bad days and I have good days, If I'm noticing my heartrate is too high for the same exercise as I've done before, I'll back off. But, mentally, the idea of striving for something, striving for improvement, is very rewarding for me. It might take me longer. I may never be normal. Heck, I may be hurting myself (I noticed my knees cannot take certain things), but nobody is going to say to me "she didn't try". My motto "I'm not dead yet, so I'm going to keep on pluggin' away." Honestly folks, if you and your doctor decide it is okay, why not start with exercise that are done on the floor, to minimize the vertical component? Anyhow, I hope I did not anger anyone here who is severely ill. I would not expect someone in very poor health to suddenly act normally and begin an exercise program. You do have to be able to eat and obtain nourishment and hydration, for starters.

Shall I assume that you will not be taking your opiate-based pain medication again ("whenever I take my opiate-based pain medication") ? From what you wrote, it sounds like you know what's going to happen, yet you have taken this medication anyway? Did I miss something?

Ernie, I am so happy for you. Back in the day, I used to do a lot of dancing, three times a week, to be exact. Lately, I'm gradually building up my abilities through exercise. For anyone else out there who is thinking about all this. There may be other things that would benefit your condition. For me, it is supplements, monitoring my thyroid hormone dose, eating organic and good food as much as possible, taking antibiotics for my "small intestine bacterial overgrowth" every three months, etc. There are too many things to list that I've done differently since I began reading this forum. If you do decide that you want to exercise, don't do too much at first. Remember, we are not like normal people. Start real slow, little bits, Keep at it. There is hope. Don't overdo, and don't give up. When I say start real slow, I mean choose an exercise that is done near the floor, at first. Don't do too much. But, don't give up. Then, come back on here and let us know how it went. (Do not do anything without first consulting your doctor.) As one other person mentioned, do not expect that you can do even five minutes worth of exercise, unless you have been doing it for a while.

Bellajulz, I consider 5 minutes on 3 different machines too much, especially if you've been doing nothing. Thirty seconds to one minute on one machine is more like it, in my opinion.

Ashelton80, I am so happy for you! It is wonderful to feel that glimmer of hope, and the thrill of the success. If I desire, I will need to find a cardiologist who will support me if I want to do the Dr. Levine program. Right now, I'm haphazardly doing my own thing.

Hi, Handmadebyemy, I so want to talk to you and see how you're doing with the program? Maybe you could PM me your phone number? As for my opinion (who asked me anyway?), I was doing an exercise regimen for years when I had an attack of tachycardia during one of my walks. I freaked out, and stopped moving for a long while after that. My POTS came on full force a few years later, during which I did nothing much, just researched and joined this forum and found a doctor who understood. My take on it is.......I am not cured by exercising. My POTS is still here, I still have orthostatic intolerance, but.....the exercise definitely improves my quality of life. I'm thoroughly enjoying the challenge. I'm watching my heartrate on the treadmill and the elliptical machines. I stop if it is getting too high. I've been exercising in earnest since the beginning of the year. Now, that being said, I believe that "setbacks" can happen, especially after things such as an illness, additional stress, lack of sleep, change of meds, whatever. For those of you who might have a thyroid situation, I'm now researching about thyroid hormone supplementation since I am on Synthroid. I am finding out the pills do not act like my thyroid would. Duh! I may not be converting the pill form of the hormone to a usable form, and this has repercussions on all body systems. It is very difficult to figure out how much hormone I need. But, that's another story... I would not go gung ho on an exercise program unless a doctor has cleared you for it. You may have a medical condition that prohibits it. But, I would like to talk more to people who are exercising. Hi, yall! I hope we can all keep it up without crashing.

Hi! I'm 59 years old, diagnosed at 51.

Mestinon gave me a headache. I couldn't use it.

FWIW, I do not have "the program", but I "do my own thing". Some days, I wear my heart monitor. I do some exercises at home, then some at the gym. I do biking and treadmill and some weights. I noticed that my exercise heartrate has gone down over the last eight weeks. Yayy!!! I will keep this up as long as I can. Again, I do not think this is a cure. I think this is a way to "manage" the impact on my quality of life. I plan on continuing my own thing until it is no longer feasible. I was an exercise nut before, so for me, this is just being who I am.

I am very excited for you that you have found something that works. I had tried this medication, one pill a day working up to two. I stopped because I couldn't take the increased dizziness, motion sickness and headaches it caused me. One thing I've learned by reading this forum, we are all different, and what might help one may or may not help another. Again, keep up the good work..yayyy!