Miraculous recovery continues

[lthomas521]

Great news. I'm feeling even better. I had been deteriorating over the past 6 months or so, and I had been dreading going to Europe on a business trip this month. I was afraid that I'd get exhausted from having to sit up in the plane and be knocked flat by a never-ending migraine.

I went to a new doctor, who prescribed midodrine, which I hadn't tried before. A friend of mine gave me some licorice extract and licorice teabags from a health food store. Another friend asked her boss (a pediatrician) for suggestions. The pediatrician suggested that I take 800 micrograms of folate twice a day, plus 25 mg of vitamin B6 twice a day, in addition to the 500 mg of thiamine and 800 mg of magnesium I already take. (Plus huge amounts of salt and water.) I also resumed taking Feosol iron supplements. After about a week of the new regimen, my vital signs started to stabilize. Suddenly, I was able to do things (like cleaning my house). I had a couple of days of setback when the really hot weather started, but who didn't?

I had no real trouble on the plane. I was able to sleep, but my pulse was about 108 when I woke up. I was able to function for a couple of days of business meetings, then I had a Saturday to myself. I walked around the city, starting about 8:30 am. I wandered back to the hotel about 5:30 pm. Minus half an hour for lunch, that's 8.5 hours of walking. I continued feeling good, and was able to stay on my feet indefinitely. No exhaustion. No migraine. Then I took a few days off with my husband and we walked all over a major European city, even visiting museums. For years, I've avoided museums, because the standing still made me sick. It's far worse than walking. But now I can go to museums for hours.

My recovery looks miraculous, but maybe it isn't. I don't have any evidence of a connective tissue disorder or a primary neurologic disorder. For about 20 years, I suspected that my thyroid was failing. Then I suspected my adrenals. But my thyroid hormone levels are normal, and my adrenals are extremely overactive. I have some sort of metabolic disorder, and when I compensate for it, with extra B vitamins etc., I suddenly get magically well. No grueling program of rehabilitative exercise is needed. If I can tolerate activity, I just spontaneously do it. Now, I'm only taking the midodrine in the morning, because I'm dehydrated then. No other prescription drugs.

My problem is metabolic. Why can't I find a doctor who can figure it out? At Mayo Clinic, they told me the problem was mental and I just needed to learn to tolerate discomfort and exercise. Morons.

[Kite#7]

Hi ,

I certainly agree with the gruelling part. It sounds like you have had some interresting , to say the least , experiences with mis DX. But don't give up on the exedrcise regimen / and nutrition as being applicable tools to lifestyle improvement.; especially for metabollic disorder. Have you researched Creatine monohydrate , Calcium ( to help with iron absorption) , even something as simple as Green & Rooi Boos Teas for hydration ,antioxdants & again real aid for Iron absorption. One of my clients actually began giving this tea to one of her Race Horses that was having an Iron absorption issue - needless - to say with the addition of calcium & the green tea supplementation the Horse saw real Imperical improvement.

I think that it is the messanger not the message that you object to. We have all been treated as inferiors ( for lack of stronger less polite phrasiology) by Doctors , however , with this disease you have to listen beyond what you hear. Its not the manner in which you are being told. Needless to say , an inspiring traverse thru a museum is and can be EXERCISE if you make it your time - a regimen. Provide yourself with specific goals. Physical as well as mental. then you particpate in your treatment - GOOD DAY or TOUGH DAY We all have had them Doctors too!!!

Exercise manifests itself in many forms - you chose. It doesn't have to be grueling to be effective - research it get a trainers advise. Develop a regimen that inspires you to preform - for your benefit .... not the doctors . I f for no other reason than to have a time to focus on yourself on trying to IMPROVE your health . that time each day 5 min 10 min half hour doesn't matter find the activity . that's the begining .I've seen it countless times.

Good luck Kite 7

[lthomas521]

It wasn't just the message (or rather, its lack of scientific merit) that I objected to. It was the fact that I had to pay for two round-trip airplane tickets (for my husband and me) and a hotel stay, only to be given a message that the POTSPLACE Web site lists as a myth.

If I can walk 20 miles in one day and enjoy every minute of it, I'm not going to waste my time or money on a trainer. And the primary interventions I'm using are nutritional, so it's not as if I'm "giving up" on that.

When I went to an exercise physiologist back when I was at my sickest, she found that my lactate threshold was appallinglly low and told me to "make a commitment to exercise." I almost burst into tears when I got that report, because the whole reason I went to her was to find out why I couldn't exercise. It was only a few weeks later that I started on the thiamine--not because of anything she recommended. I tried it out of desperation after reading about someone who had suspiciously similar symptoms due to a thiamine malabsorption problem. After 3 or 4 days of huge doses of thiamine, I was able to go on long walks. About a week later, I had to run a mile to get something to the Federal Express drop box in time for pickup. I even had to carry a 38-pound border collie the last third of the way (he had just come from the shelter, and he went absolutely legless from fear when we got to the noisy street). We made it to the drop box in time, and we made it home without incident.

My point is that it is abnormal to have such impaired exercise tolerance to begin with. It's stupid and cruel and probably harmful for health care providers to tell someone who is as sick as I was that the problem is mere deconditioning and that the solution is to "learn to tolerate discomfort" and exercise more. That advice certainly didn't help me at all. It just made me think that the people who said that were ignorant, which of course they were.

[deeplyset]

Ithomas521 - I totaly feel you!! I just came back from the mayo clinic and I talk to a neurophysc doc who told me that my problem was phsycology and if I would just start to exercise 30 minutes a day then I would be fine. The thing that really upset me was that she told me that my TESTS came back normal she was 2nd to last appoint of the visit. This was after 2 years of looking for an answer to what was wrong. I was so upset after the appointment that I almost left to drive the 1000 miles home and not go to the final appointment. But I decide to go, and when I got to the next appoint the doctor out of the blue told me the result of muiltiple other tests (ie the tilt table, the atonomic test, blood test, etc.) that came back abnormal. She was a GI doctor. I was really confused then. I went home and I got a call a week or so later from the Mayo clinic asking me to come back for further testing then they diagnosed me with POTS and well as other stuff! I was really upset with that doctor, I'm yet to recieve her report. I think some people make up their mind about you and are so press to prove their point that they don't care what it costs someone else. It's really sad.

It wasn't just the message (or rather, its lack of scientific merit) that I objected to. It was the fact that I had to pay for two round-trip airplane tickets (for my husband and me) and a hotel stay, only to be given a message that the POTSPLACE Web site lists as a myth.

If I can walk 20 miles in one day and enjoy every minute of it, I'm not going to waste my time or money on a trainer. And the primary interventions I'm using are nutritional, so it's not as if I'm "giving up" on that. 

When I went to an exercise physiologist back when I was at my sickest, she found that my lactate threshold was appallinglly low and told me to "make a commitment to exercise." I almost burst into tears when I got that report, because the whole reason I went to her was to find out why I couldn't exercise. It was only a few weeks later that I started on the thiamine--not because of anything she recommended. I tried it out of desperation after reading about someone who had suspiciously similar symptoms due to a thiamine malabsorption problem. After 3 or 4 days of huge doses of thiamine, I was able to go on long walks. About a week later, I had to run a mile to get something to the Federal Express drop box in time for pickup. I even had to carry a 38-pound border collie the last third of the way (he had just come from the shelter, and he went absolutely legless from fear when we got to the noisy street). We made it to the drop box in time, and we made it home without incident.

My point is that it is abnormal to have such impaired exercise tolerance to begin with. It's stupid and cruel and probably harmful for health care providers to tell someone who is as sick as I was that the problem is mere deconditioning and that the solution is to "learn to tolerate discomfort" and exercise more. That advice certainly didn't help me at all. It just made me think that the people who said that were ignorant, which of course they were.

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[lthomas521]

It sounds as if the neuropsychology people at Mayo haven't learned anything in the three years since they told me the same foolish thing. Unless they have actually validated their tests on a POTS population, any conclusions they draw from them would be worthless.

If I could have exercised 30 minutes per day, I wouldn't have flown clear out to the middle of nowhere for medical help. Somehow, they manage to ignore the fact that POTS often occurs in people who have been serious athletes.

Do the Mayo docs really think that Rochester, Minnesota is such a hot tourist destination, that healthy people would make up a fake medical excuse to go out there? Or do some of them have such severe narcissistic personality disorder that they think we go out there just to bask in their exalted presence? Silly me. I went there for actual medical care, so I came away disappointed. If only I'd gone to Vanderbilt!

But at least you got a tilt-table test, which is far more than I got. The one I eventually got at Mt. Sinai, in New York City, showed that I had florid POTS. I really respect the neurologist I saw there. She made it clear that she didn't know everything, and that there are a lot of things about POTS that no one knows.

What other stuff did they find? What other kinds of things did they look for but rule out? The most common cause of misdiagnosis in medicine is what they call "premature closure of the differential diagnosis." In other words, no one ever thought of the correct diagnosis, so no one ever ran the tests necessary to detect it. We ought to compile our own list of differentials for POTS.

In the meantime, avoid doing anything that could have a misleading psychiatric diagnosis stuck in your file. If they have already put such a diagnosis in your file, insist that it be removed. Once they think you're nuts, they won't listen to you at all.

[Kite#7]

Ithomas,

I have to agree with some of what you describe, having experienced myself. I went to the Mayo twice for extended visits at my own cost. My first two week session left me with more questions really than answers ; and many Imperically stable test results. . Due to the imperical evidence Questions arose from one Doc. At which point extended my stay to go thru further exam with a Neuro Physch , which I left "passing" with flying colours ( pink ELEPHANTS). My dx that visit was possible Parkison's / neuro muscular disease - Drug regimen , watch your exercising and return in a year . Didn't make the year. I went back and thru another battery of tests. Suffice to say it was another Two weeks ; still had one doc question my mental well being. H e obviously had not taken the time to review the previous visit , talk to my managing Doctor , or Me ; and above all was most interested on / in the imperical tests rather than the developing symptoms evidenced by my two visits. I guess what I'm getting at with this is I was / am lucky to have a great managing Dr at the Mayo who did see the problem and correctly recognised my symptoms , but I would hate for you too withdraw a tool out of your arsenal because of your experience. As far as wasting money on a Trainer ; its like anything if you find a qualified one to help and advise you to set up at home you won't need them long and it will be an investment to your future. I admit I''m bias as I am trainer / gym owner , hence my impertence towards the suggestion that exercise doesn't help. You know your body better than anyone - describe your symptoms to someone who wants to help , who can develop a program around and for the "benefit " of those symptoms. I don't mean to be flippant about it . I practise what I preach -- It has saved me. On the days I can't exercise I take my time and change it up -- hence the museum walk or I just relax exercise my mind , but its my time set aside - training against this STUFF.

GOOD LUCK & Slainte' Kite 7

[deeplyset]

It's so helpful to hear that other people have gone through this. I actually went to the Mayo Clinic in AZ. And went there twice for a week (pretty expensive). I don't know if they ever left her diagnosis in my file. She said I had a conversion disorder (basically meaning I had some trauma in my childhood or life in generally that I could cope with so I developed an illness that prevent me from doing things I didn't want to do) and Non-epileptic seizures which is where this from your pass come back that you don't even realize (sub-consciously) and you passout/faint/collapse looking like and really seizures but it's not because you can't handle what going on around you. But either one of these you can't debt when it comes to POTS because they test it by giving you a phsyc test and it you physical symptom complaints are high and your stress complaint are equally as high you have a conversion disorder (also mind you they will call anything they can't explain that). Mind you also, that the test ask allot of physical questions that POTS patients are really experiencing. And they were right my stress levels are off the chart because I'm not managing stress. Then with the non-epileptic seizures when you collapses and pass out for me most of the time it looks like a seizure but it's not, and because she couldn't explains that's what it is and I'm collapsing right before I pass out when my heart gets to about 130. AND my blood pressure is relatively stable.... AHHHH. So, because my brain waves don't change their FAKE seizures in her mind!!! SO FRUSTRATING. How do you argue it???

Ithomas,

I have to agree with some of what you describe, having experienced myself. I went to the Mayo twice for extended visits at my own cost. My first two week session left me with more questions really than answers ;  and many Imperically stable test results. . Due to the imperical evidence Questions arose from one Doc. At which point  extended my stay to go thru further exam with a Neuro Physch ,  which I left "passing" with flying colours ( pink ELEPHANTS).  My dx that visit was possible Parkison's / neuro muscular disease - Drug regimen , watch your exercising and return in a year . Didn't make the year.  I went back  and thru another battery of tests. Suffice to say it was another Two weeks  ; still had one doc question my mental well being.  H e obviously had not taken the time to review the previous visit , talk to my managing Doctor , or Me ; and above all was most interested on / in the imperical tests rather than the developing symptoms evidenced by my two visits.  I guess what I'm getting at with this is I was / am lucky to have a great managing Dr at the  Mayo who did see the problem and correctly recognised my symptoms , but I would hate for you too withdraw a tool out of your arsenal because of your experience.  As far as wasting money on a Trainer ; its like anything if you find a qualified one to help and advise you to set up at home you won't need them long and it will be an investment to your future. I admit I''m bias as I am trainer / gym owner , hence my impertence towards the suggestion that exercise doesn't help.  You know your body better than anyone - describe your symptoms to someone who wants to help , who can develop a program around and for the "benefit " of those symptoms.  I don't mean to be flippant about it . I practise what I preach -- It has saved me. On the days I can't exercise I take my time and change it up -- hence the museum walk or I just  relax exercise my mind , but its my time set aside - training against this STUFF.

                                              GOOD LUCK & Slainte' Kite 7

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