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Guest tearose
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Guest tearose

Hi out there goldicedance. Just looking for you and trusting you had a good trip. We'll all want to hear your news when you are able to post. Rest well and then give us the details! Oh, I sure hope you got lots of valuable information! That trip to OZ is a major one! Welcome home, tearose

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Guest tearose

hey pal emily, maybe she's going to wait till after the holidays to check in?? :)

I'm remembering that one week visits turned into two weeks at both of my visits, so maybe she's still out there.

brrrr, poor gal, hope your keeping warm goldi! tearose

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  • 2 weeks later...

You all are super---I really appreciate your concern and interest. You are truly my dearest friends...I wish I could meet you all in person. Perhaps that day will come. If often seems that you are all more genuine in your concerns than many people I know. Thanks again!

My visit to the Mayo--it was extended because my husband was also undergoing a series of consultations to see the cause of neuropathies and whether they could be related to gastric bypass surgery or something indeed more serious. He was told that his system is functioning well and that about 2% of the population have neuropathies for unknown reasons. He had the opportunity to experience the infamous Thermoregulatory Sweat Test. He can now sympathize with me!

As to my visit--Dr. Low recommended a few things--increase in Mestinon over a period of time and to discontinue DDAVP. He was strong about the DDAVP recommendation. He said that unless you have the specific test to rule out diabetes insipidous than DDAVP should not be used on a regular basis. He also confirmed my neurologist's use of Neurontin and Zoloft to control migraines and help with POTS. My internist and cardiologist were concerned that the high dosages of Neurontin and/or Zoloft were causing my problems.

Like a car when you take it to the garage to fix a problem suddenly on the day you take it in it doesn't demonstrate the problem that was how it was when I saw Dr. Low. Not complaining though since improvements in how I am feeling are better than the alternative.

I did find the Mayo this time a bit more chaotic. I never did see a cardiologist or a migraine specialist since appointments could not be fit in during the nearly 2 weeks I was there. I was disappointed about that but I certainly could not stay over another week or so.

Dr. Low was Dr. Low--he is an extremely compassionate physician in addition to his being an expert in POTS and the autonomic system. I am grateful to him and his associates for all their work in the field of POTS.

My visit was extremely exhausting--the Mayo Clinic is so large, the walking is tremendous. We stayed in the closest hotel that had underground access to the Mayo buildings. Moreover two weeks at the Mayo is extremely depressing. You realize how grateful you are for your health when you see others in more desparate straits.

So here I am--recovering from Rochester and the holidays, and back to my old evil ways. Retirement is looking pretty good--33+ years of government service. I basically am working for about $300 a month. I have mixed thoughts about retirement now that I have approached the magic age of 55.

Anyways--I hope that you all had a restful holiday and I wish all of you a happy and healthy New Year--one filled with peace, joy, and improved health!

Lois ("aka" Goldie)

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Goldie

I'm glad to hear that your trip went pretty well and of course your happy to be home.

What kind of testing did they do while you were there?

I wanted to clarify one thing that you said about Neurontin and Zoloft. Was Dr. Low saying that you should take it and you were getting conflicting input from your other 2 doctors?

thx

steph

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Goldie

I'm glad to hear that your trip went pretty well and of course your happy to be home. 

What kind of testing did they do while you were there?

I wanted to clarify one thing that you said about Neurontin and Zoloft.  Was Dr. Low saying that you should take it and you were getting conflicting input from your other 2 doctors?

thx

steph

Sorry for the confusion, Steph. Dr. Low stated firmly that he thought the Neurontin and Zoloft were not creating problems. In fact, he said that it would not be unreasonable to increase the amount of Neurontin and Zoloft I take. Right now I take 3600 mg of Neurontin and 250 mg of Zoloft--both to help with POTs and prevent migraines.

Regarding the tests--I had the Thermoregulatory Sweat Test, the Qsart, blood tests, and urine analyses (24-hour collection). I did not have the official TTT since he knew I already had POTS.

Does that clear things up????

Lois

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Lois

Thank you that helps tons! I'm glad to hear that he supports the use of those medications. I know that Neurontin has been one of the best drugs that I've ever taken. I don't think that I've exceeded 1000 mg in a day but everyone is different. I only take 12.5 mg of Zoloft.

Was the sweat test as bad as everyone says?

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Lois

So glad to hear you are back... I've been anxious to hear about your trip as I'm headed to Mayo for the first time Feb. 7. I was referred by Cleveland Clinic--they did a TTT to find POTS.

Did you already know the reason behind your POTS? Was this a follow-up visit or your first? Was the point to find a cause behine the POTS?

Do you have any suggestions for things to ask? Dr. Low as so backed up I agreed to see his associate Dr. Fealey. HOpe that was a wise move.

Take your time getting back on these questions as you need rest after your trip.

Happy 2005!

Ginger

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Guest tearose

Welcome back! Lisa/goldi Yes, we genuinely missed you! You bring your own flair to our colorful group and you were gone a little too long for us! :)

I understand the long trips through the long halls of Mayo and the desk check-ins and the grueling tests, but mostly I remember the hope. I had hope that someone, just one doctor, maybe, would be able to put all the pieces of the puzzle together for me. That made it all worthwhile. I am fortunate to have met, spoken at length and continue to follow up with Dr. Fealy. I trust Dr. Low does the same for you. It sounds like he does. I hope you can get your other questions answered here with maybe just a phone call from Low to your local pcp!

mini-story: I always wanted an easy bake oven as a little girl. My parents never got me one. It was something I really wanted and asked for it every year! As an adult I even shared with my husband that the only thing I regretted about my childhood was not getting an easy bake oven. Well, after my last trip to Mayo, I did that Thermo-Regulatory Sweat Test ...and can say that after that test I never had the desire for an easy bake oven again!!! :) Kinda felt I had experienced the insides of an easy bake oven... :lol:;):P

glad you survived it :)

That was interesting that you did Mayo with your husband...takes sharing to a new level. Was he as satisfied with the experience? I wish him well too.

I'm glad to see you back and wish you a wonderful year, retirement if you wish but I think for you I wish a fun trip with your husband that has nothing to do with illness or wellness but just plain old fun!

Best regards, tearose

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Thank you so much for the update. We learn so much from each other, it is a real help to hear about each other's journey.

How is the withdrawl from the DDAVP going for you? I know I tried to cut back last month and went into a complete tail spin. My doctor and I consulted and he is addiment about me staying on it. I take 1MG daily.

Happy New Year.

EM

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lois,

what is the reason not to take DDAVP long-term??? i think i would have a horrible time going off of it...i still have to pee often enough on it!

what an exhausting trip. i am glad that you and your husband our back from oz (as tea would say) and back in your own bed.

i don't have any funny things or words of wisdom...just glad that you are back on the site with us.

emily

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