futurehope

If I were you, I would nix the jogging especially since you are just beginning, and use an incline while walking, or a bicycle to get the heartrate up. Also, you can walk carrying weights in your hands or wrapped around your ankles. That will make you weigh more and get your heartrate up.

FYI, Swallowing difficulties need to be evaluated by a physician. There can be other health issues present along with POTS.

I am so sorry this has happened to you. At one time, my doctor had prescribed neurontin for my restless leg syndrome, and it had made me ultra sensitive to motion. I had to discontinue it. Maybe your med is doing this to you? I hope you find out what is happening so you can get on with your life.

Boymommy3, HPA - hypothalamus, pituitary, adrenal, I think. They all speak to each other to help sustain us. Update on my prior comments: Surprisingly, my Free T3 , Free T4 and TSH as of right now are the best they have ever been. The TSH is right where I want it as are the two other tests. I have no idea what caused me to finally convert the Synthroid's T4 into an adequate amount of T3? My exercising, maybe? Anyhow, after years where the above tests came out fluky, I've finally arrived at normalcy. The problem is, I still am cold, and get weak attacks, along with tired attacks. So, in my case, the endo was right......it is not my thyroid hormone causing the problems. It is something else...... Time to talk to my mast cell doctor about all this. I still have not arrived where I want to be in terms of how I feel. All for now. Good luck to everyone out there dealing with thyroid issues.

Lynnie22, Bless your heart. I can so relate to everything you wrote. I guess my alternative is death (if I refuse to take hormone at all), so from that perspective, I'm blessed to be here and able to function on some level. I managed to survive all right on the Synthroid from 20 years old up until 50. After the other hormones declined (estrogen and such), it has been downhill for me. BTW, I take name brand Synthroid only. I do not trust generics. It is unbelievable that doctors at Mayo do not know what to do either. That tells me that there are no easy answers. My one endo who allowed me to experiment with timed-release T3 taken in split doses of 2.5 mg throughout the day was concerned about my sensitivity to medications and possible palpitations. That is why I had the T3 compounded to a relatively low 2.5 mg dose and created with a "time-release" chemical added to the hormone. I was unsuccessful. I got diarrhea. I still have the pills, so I am seriously considering popping one again to see what happens. Then again, I may be getting diarrhea from the gelatin capsule itself, or the time release med that was mixed in, or the thyroid hormone formula itself. I have MCAS, meaning, I am sensitive to many things. Anyhow, from reading these posts.....I can sympathize with anyone going through thyroid madness.......I can conclude that as of right now, most medical practitioners do not have the knowledge as to what to do, and are unwilling to experiment with a POTS patient who is sensitive to any changes. I may go back to my wonderful experimenting endo to have my cortisol levels checked out via a salivary cortisol test. My cosyntropin stimulation test of my adrenals was normal, but my adrenals react poorly to stress as determined by an insulin tolerance test.

Everyone who responded to my difficulties....I thank you. It is difficult. I have tried compounded time-release Cytomel throughout the day, and was having diarrhea attacks from the meds. The attacks stopped after I stopped the T3. So I am definitely not an easy case. Yes, it is possible my adrenals are weak, though still functioning. This endo did have me check my serum cortisol, but he neglected to tell me not to exercise before they drew the blood. I read on the internet afterwards that exercise affects the results. He also tested for ACTH. But, from what I've read, he should have done the saliva cortisol tests in the AM, midafternoon and PM, not a serum cortisol. Once I emotionally recover from this poor experience with the endo, I will move onto someone else. I need a break from doctors right now. Half of them are worthless. Sigh.

My thoughts are this: I am convinced that the removal of my thyroid for cancer, and the subsequent dependence on Synthroid is no longer working for me. You can see by my bloodwork that I get enough T4 (which is a hormone obtained from the Synthroid), but that my body is not or cannot process the T4 pill into the usable form T3. My bloodwork show this. Consequently, my TSH is a bit on the high side, showing hypothyroidism, and my Free T4 is on the high side, showing a mild hyperthyroidism, while my Free T3 shows I have a mild deficiency. I have been to three different endocrinologists about my thyroid conversion problem (using the Synthroid and converting it to usable T3 hormone). Two of them do not seem interested or care one whit. The other, bless his heart, did allow me to experiment, but I was unsuccessful. One of the two uninterested endos, the one I saw last week, suggested anti-depressants and a sleep study because it "may not be my thyroid causing the problems". IOW, it's my problem, not his and he has no clue what to do about my conversion problem. It is a horrid state of affairs when the doctor has no clue how to help you so he suggests depression and sleep problems as the cause. I was asked just enough leading questions for the uninterested Dr. to suggest the antidepressant and/or the sleep study. Apparently, medical science has no idea how to treat a T4 to T3 conversion problem. Consequently, I suffer with "hypo" symptoms constantly. It is disheartening to say the least. Most endos are so overwhelmed with the diabetics, that they have neither motivation or inclination to figure out my difficulties. If you have a good endo sucessfully treating your thyroid difficulties, you are blessed.

Oh, good grief. What a waste of time (and money). Move on. Not only is this doctor uninformed, but it sounds like he is too close-minded to listen and learn.

I would like to add how I view my POTS problems. I look at all my symptoms as if, for example, I broke my arm and as a result, I have to rehab it. Something went wrong in the functioning of my body, and I needed to work to relearn how to live with POTS. It has been difficult and much work. After all, I used to be able to do all sorts of things before POTS took over. The older I became, the worse the POTS got. When I was younger, I was relatively normal. I had my odd symptoms, but I could still participate in life. After resurrecting this thread from Lemonsin2lemonade, I have to agree with much that was said. Sometimes I push through. Sometimes I don't. I rest more. I am aware of my disabilities.

I agree with Relax86. In the past, as I began my exercise regimen, I have put up with surges, fatigue, etc. But, my conclusion is that I am willing to endure these reactions because overall, I am in a better place to enjoy everyday life. I have decided that in my case, the exercise has given me enough positive reinforcement to continue...and so, I ignore my less than stellar response to exercise in order to gain the benefit of increased ability to enjoy life.

The stuff makes me sick. Maybe it's the other ingredients in the formulation like the coloring that does it to me? I hope I never need it.

The response you had is not a response that I get. Also, FWIW, you should not be getting your heartrate "up there" without warming up first. Also, "cooling" down and gradually decreasing your heartrate is preferable to exercising, then just stopping. Even "normal" people can cause syncope if they stop exercising cold turkey.

Wow, you have some difficult symptoms to deal with. I imagine it would make it scary to take risks and make yourself worse. It sounds like you need to discuss with your MCAS doctor, and see if he as any suggestions. I certainly do not want to say anything or suggest anything that would make you worse. Brethor9, What diagnoses do you have? What is causing the nausea? Are you still in the process of being diagnosed?

Brethor9, I was one of those people who had been exercising by walking for 1 hour/day when my palpitations began. I stopped everything because of fear, and remained inactive for years. Then after getting the diagnosis of POTS, I began slowly to exercise again. I am currently exercising as much as possible. I become more POTsy if I have to let up because of illness or whatever. I now have an MCAS diagnosis as well as POTS. I noticed that when I first began exercising, my MCAS was causing my interstitial cystitis (bladder pain) to return. The exercise was contributing to mast cell degranulation, I guess. But since I do not get anaphylaxis or any other really dangerous response, I continued exercising, and my body adjusted. I can now walk on the treadmill at 3.5 MPH for 1/2 hour, and 3.3 MPH for the second 1/2 hour. I will keep this up because I believe it allows me to enjoy life more because I can participate. It has not cured me, and I really do not expect it to. I am not telling you to do what I do, as we are all different. I thought I would share my experiences.

I agree with this. My exercise endurance is better. My underlying condition is still there (POTS, MCAS).

Does this person who measured your breaths per minute know what your heartrate is? Aren't they related? Or maybe they think if you slow your breathing down, your heartrate will follow? I'm glad it was relaxing for you to go to this therapist.

I loved Klonopin. My POTS feeling dissipated while on it. Unfortunately for me, my nervous system adjusted, and then the same dose did not continue to work. As a matter of fact, I could tell when the drug was wearing off as I would become more anxious from the withdrawal than if I had never taken the drug to begin with. Not wanting to increase my dose, I discontinued the drug. That was not easy since I had terrible insomnia and anxiety as a result. My choice is to stay away from benzos.

May I suggest that you do not look at the answers to your question? The answers will be irrelevant for you. You will need to focus on yourself and your situation. People on here have differing reasons for their POTS problems, so reading how far someone can walk will not really help, since the reason for your problems may not be the same as the reason for theirs. Maybe you just want to know if there is improvement possible after needing a wheelchair? My suggestion is to always assume that there would be room for improvement, unless a physician gives you a good reason why not. I thought it would be a bad idea for you to compare yourself to another person on this forum. Do your best to remain hopeful. Reading others' responses will not help your situation. God bless. P.S. If someone on here is able to walk long distances, in all likelihood, they are no longer frequenting this forum because things are going so well for them.

Kelly, if you don't mind telling me, what H2 are you taking? How many milligrams in each dose? I was surprised that you could take them 4 times/day? TIA

Kellysavedbygrace, I'm so happy for you. I, too, am a POTS patient diagnosed by Dr. Afrin this past year. It is truly a blessing to be able to tie all my infirmities together into something that makes sense. I am also in the experimental phase of trying medications. Continued good wishes to you.

I am going to try to remember as I am in the ninth month of what I call a serious exercise routine. I, too, had Dr. Levine's program, his three month one, though I was not an official participant in the study. I was too old. They were then gracious enough to send me an additional 3 month more difficult set of exercises that I did. I then repeated the "sixth month" two more times for a total of three "sixth months". I am now on my own as they will no longer recommend anything further and consider me "fit". I was able to walk on the treadmill to begin with as I had already been doing a small amount of that. For me personally, the rower would be too much even to this day. It is way too much movement of too many muscle groups at once. I won't even try it. I prefer the treadmill because I could slow it way down, though for me as a POTSY, slowing it down too much could mean making me more POTSY and dizzy with a higher heartrate. If I remember correctly, I had a difficult time keeping my heartrate down when I first started exercising. Also, as I said, if I tried to slow the treadmill down, that did not help to decrease my heartrate either. So, if the cardio nurses are saying to lay down or slow it down, I have to agree. For me, I think I just struggled though the first three months. I remained on the treadmill, but I could see obvious improvement over time in my heartrate and what I could do. I kept notes of everything on the charts that they gave me. It was not uncommon for me to go home and crash. I still do that if I feel like it. It's part of who I am and what I need. On to the months four through six which were not part of the study ever, but were given to me after I asked. This was even more difficult. I remember thinking that I knew why this was called a work out. It was because I was always working so hard. There was day after day of 45 minutes - 1 hour of working out. This was not easy. It really wore me out. I must be a masochist because I did it anyway, even if it made me tired and in need of more rest. Fast forward to now, in my own routine after repeating month six for three times total. I have decided to jog, just because I used to do this in my thirties. I am now 61 years old. I never have gone past jogging for 1 mile, even in my thirties. Well, I have decided that the exercising almost every day, which is what month six involved, was too much for me, so now I do the aerobics Monday, Wednesday and Friday, and the weights on Tuesday and Thursday, and I do nothing except my usual life on the weekends. When doing the Levine month one through six, I would frequently append the weight routine to happen after the aerobics. So currently, unless something sets me back, I warm up on the treadmill at 2.5 mph for three minutes, then jog at 4 mph for 1 mile, then remain going at 2.5 mph for a total of 45 minutes, for a distance of 2.?? total. I cannot tell you how excited I am that after all this working out at inclines and time on the treadmill for nine months, I can jog. I find the jog preferable to the high inclines I was needing to get my heartrate in the zone. I was needing increased inclines because I was becoming more fit. As a matter of fact, after consulting with the Levine people and telling them that it was becoming too difficult to get my heartrate up and keep it there, she had asked me to forward them the average over three days of my resting heart rate after waking up in the AM. The zones were recalculated for me at about 5 beats per minute lower in the base pace and the maximum steady states because of my increased fitness. Conclusion: I still have POTS. I still have MCAS. I still crash after exercising, but not as severely. I can do more things without horrible POTS symptoms for longer periods of time than before exercising. I will probably keep this up, or whatever I can keep up, for the rest of my life. I will not do the recumbant bike. It hurts my knees. I will not do the rower. I can tell when I used the rowing weight machine how difficult it would be for me to do that motion for many minutes. I would be tachycardic for sure and require a major recovery. And, oh yes, at the beginning I would have days in which I was suffering from tachycardia late in the day because I had been exercising earlier and it was too much for me at the time. So, I don't know what to tell you all except that having the cardiac nurse monitor is a good idea, and do not expect to get the benefits that normal people get after exercising in which they feel energized and great afterwards. This never happened to me. I notice an improvement in my fitness, and how my regular life is so much easier than exercising. All for now folks. Good luck.

This is what I found on the internet: http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/evaluation/autonomic/qsart.shtml

I do not totally understand all there is to know, but....... I had had a test done in the past called an insulin tolerance test (I think? I cannot remember). It showed that my adrenals respond "below normal to stressors". In the case of the test, the stress was a deliberately decreased blood sugar. The adrenal hormone was supposed to increase more when my blood sugar was decreased. I tried additional adrenal hormone on a daily basis and it did not help me. Unfortunately, it gave me severe heartburn. So, I do not take any. I was told though that I probably react poorly (i.e., below normal) with adrenal output when under stress. Under stress can include being sick, needing surgery, being stressed for whatever reason. So, maybe this is a POTsy thing? I have no idea.

I agree with Arizona Girl in that finding an underlying cause for POTS will help you determine your final outcome. As for "better or worse", as far as I'm concerned I've become progressively worse from 2 years old, through the teen years and now at 61 years old. I've never understood where the doctors say the young ones will get better. My conjecture on my issues is that the malfunctioning displayed itself at an early age. It showed itself more frequently the older I got, until I became too disabled to work or live my life the way I used to. I have mast cell activation disorder. The disorder is caused by a genetic mutation. How can you fix that? The older I became, the more frequently and severely my disorder was displayed. I don't know why doctors make blanket statements about the younger ones getting better. I started out young with a defect that manifested itself more frequently and severely the older I became. What do the doctors know? Half the time they do not even understand POTS. My MCAS (Mast Cell Activation Syndrome) doctor told me that the way I displayed some symptoms at a younger age, and then noticed more and more symptoms as I aged is typical for my disorder. That being said, once you have identified what it is that is contributing to your particular case of POTS, the better chance you have of finding help for yourself. Oh, and BTW, us older folks are in a deteriorating condition naturally. Even the healthy older folks begin to deteriorate. It doesn't take a rocket scientist (or a doctor) to figure out that older folks tend not to get any better or any younger.

Count me as having both, along with the POTS.