My Visit To Mayo Arizona

[Lemons2lemonade]

*if any one wants to hear about my trip feel free to message me, thanks!

[Lemons2lemonade]

Also, thank you to mary and sue and everyone else for your concern. Also, Issie, thank you for welcoming me to Arizona and sharing your story with me--also for your never-ending support. Both for myself and everyone else on this forum, you truly are an amazing and remarkable woman!! It took me a long time to write this because i wanted to do a lot of thinking about how i would post this, and i wanted it to be as informative as possible.

[Ashelton80]

Thank you! I found this very informative. Did they give you recommendations on how to get 10 grams/day? My Vandy doc only suggested 3 grams and it's not nearly enough. I guess I'm curious if they encourage salt tablet use or not?

Congrats on what sounds like a successful appointment!

Ashley

[jangle]

Thanks lemons, I agree that spending too much time on these forums might be counter productive not that the people are bad on here but just that we need to start focusing on other aspects of our lives and not let POTS take center stage (As difficult as that is). Exercise has been helping me out a lot and I know it will help you as well. Interesting insights on the water intake, but I have to ask what do you mean by 1/3 supplemented with electrolytes? Does that mean salt or were you talking about potassium?

Anyways, even though there isn't a lot of research about Vitamin D and things like the RAAS, I think it's been helping me at 2,000 IU a day. I was considering sun tanning, but I think the risk of skin cancer or what not might put a damper on that so I've been trying supplements.

[roxie]

You really did a great job on this

So with the fluids, 1/2-1/3 of our total fluids should be electrolytes & the rest can be water??

I'm asking bc I'd always rather drink water so it's nice to have an amount of what other I have to drink.

And is simple pedialyte or Gatorade enough potassium with florinef?

Did he give any advice on increasing cognitive abilities ?

[issie]

Lemons,

It sounds like you've sorted allot of things out, especially in the directions that you want your life to go.

It seems you put allot of thought into your writing. I hope you are able to get a handle on what really is going on with you and find some answers. It sounds like you got allot of your questions answered. I hope you continue on in a very positive direction. It sounds like you are trying to - despite this illness. Good going! Keep us posted on how you're doing - as it sounds you don't intend to be on the forum very much.

Issie

[Lemons2lemonade]

Ash, I use a salt solution, water and salt mixed together as a shot, have found that it works better for me than tabs. jangle, I think he just meant gatorade or pedialyte, which means salt to me. Probably wouldn't hurt to throw in some oj or a banana for some potassium, I take potassium already because of the florinef. Bananas, yes, the rest can be water. Also, it probably depends on the person but neither gatorade nor pedialyte would be even close for me for potassium. I take supplemented potassium.

[corina]

lemons, thank you so much for sharing your experience with mayo. i'm very glad that you got insights to work with to get your life back. wishing you all the best doing so!

[julieph85]

Sounds like you had a great experience there! His recommendations were almost identical for me, minus I have the autoimmune component. I'm so glad you were able to get some help and I totally agree with the insights about the forum. I primarily post on here when I have questions about symptoms and when I find an interesting research topic, other than that I try to stay off because I do think it leads to me obsessing over the illness rather than trying to get functional. Good luck with everything and let us know how your progress goes! We CAN beat this!

[futurehope]

I can relate to the original poster. I was on this forum quite a bit at the beginning of my saga. I was trying to learn as much as possible to help myself. I believe we can different reasons for displaying POTS symptoms.

After having this for at least 10 years, I do not frequent this forum as much. I constantly push myself, even if "I don't feel like it". I also intend to live my life to the fullest, no matter what. So, I can totally relate. My life philosophy has served me well.

I hope I can encourage others to seek help, push through the bad times, get good doctors, but overall.....LIVE YOUR LIFE! God bless everybody for your fortitude.

[momdi]

Thank you for that great report. It's hard to explain to people how Dr. Goodman approaches his patients. I think you did a pretty good job. I usually advise people to have all their story ready to present as concisely as possible, because Dr G listens like no other doctor I've ever met. And I'm a retired nurse, so I've known a lot of docs. At first, it's a bit disconcerting. Ok, a lot disconcerting. He just listens.

Sounds as though he did a pretty thorough job for you. Best of luck with your future. i admire your thoroughness and determination.

[Lemons2lemonade]

momdi, yes, that is a very accurate description. At first i thought he just wasn't a very nice person, but then when he was quoting me spot on a week later, i realized how intently he was listening.

[Lemons2lemonade]

I should also mention that i had insurance company issues, which i posted on here about before, and that the schedule became very tight. The following monday, dr. g skipped his lunch to meet with me. What an amazing person.

[rubytuesday]

Thanks for sharing, lemons. I envy you to be able to do that gardening. When we moved to this house there wasn't any landscaping. I'd landscaped and made 7 flower beds (3 very small). My problem is I'm always finding myself in pretty weather going to do light weeking. When I do that, I either squat or bend down. So I just get up and either get up and have to get down before faint. My cardiac specialist in dysautonomia tells me that I will have fewer warnings of faint and about falls being 4th leading cause of death with this. I sure don't want to be hitting my head on the rocks or bricks. He also told me not to be doing things outside when it's 90 or above/high humidity. I never considered light weeding anything 'athletic' but I suppose it is the heat/humidity coupled with the bends/squats that I haven't been able to overcome yet. I can walk, but where I live in either direction I would go, I still have a faily steep incline to walk and the driveway also has a good incline. I can go down steps, or steps that are small, but a steep step of multiple steep stairs are hard for me. By the time I get to the top landing at church, I must show it too (color goes out of my face as the blood is in my legs that feel laike they're not going to hold me up). I can cross a big parking lot and sometimes get through a store, but I can also get hit from left field with the near syncope, when I'd felt fine just before. I'm pretty determined, though. If it means wearing a helmet to pull the weeds this year--by golly, I've bought one :-)

Sounds like you got great information. How did they test for Sjogrens? I'm on pilocarpine and was just curious.

[lgtaylor100]

Lemons -

Thanks for your post. It was very encouraging.

I was doing well for about three weeks. I have lumbar stenosis and had nerve block shots so I was able to do some walking and did every day. Then my back and legs started hurting again ( I have to go for the second in the series of shots in two weeks) and I cut back on the walking. On top of that I got a sinus infection which appears to be lingering. It's hard to remain positive with setbacks but I need to keep pushing through as you say despite setbacks.

Thanks for your info and encouragement,

Lynne

[ramakentesh]

Sounds like you had a very comprehensive visit at Mayo Arizona.

Im a little unclear about all the blanket statements being made. You say that they arent the opinion of Dr Goodman, so are they just your opinion?

I dont think anyone is suggesting that the research being conducted at vanderbilt, NYMC or Toledo has all the answers but at least they are conducting research. I dont really understand that statement. Have you read the research yourself?

In terms of treatments Blair Grubb is regarded as the unpeered authority on treatments for POTS. He recently wrote a piece suggesting that methylphenidate (sp?) did work for a selection of patients who were refractory to all other forms of therapy. So you or your doctor may have had different experiences to this, but I would take the word of a peer-reviewed medical paper on the issue myself.

I think these forums used be a quite helpful place. it was about sharing experiences, swapping tips and discussing medications. Its probably changed a lot now days and is much less helpful.

But I think that people need to be careful about making blanket statements about the illness based on a fairly limited view of the research, their own opinion or the opinion of one doctor. People frequently apply their experience or understanding to everyone. The funny thing is that you can see three POTS or autonomic specialists and get three very different opinions about treatment and etiology - sometimes opposing views.

Having spoken to a myriad of doctors and researchers in the field of POTS there are two very different arms - the area of treament and the area of etiology. The research on the etiologies is still very unclear and in some ways may be in its infancy. The science behind treatments can therefore only be guesswork. How can a doctor make valid statements about the reasons why one medication works better than another when they dont actually have valid understanding of the etiologies? You cant so you just have to see which one works better than another in practice.

lastly are you sure that urinary sodium is an accurate measure of blood volume?

[ramakentesh]

the point about beta blockers is also equivocal.

Effexor is an SNRI? Since reduced NE reuptake in implicated in POTS....

[HopeSprings]

The research on the etiologies is still very unclear and in some ways may be in its infancy. The science behind treatments can therefore only be guesswork. How can a doctor make valid statements about the reasons why one medication works better than another when they dont actually have valid understanding of the etiologies?

Yes, this is the biggest frustration. How do you treat the unknown? Being so sensitive to medication, I hate to play around with different drugs. If they could point to the dysfunction, it would make things so much easier. I am very grateful for all the research that is going on, but it points in fifty million different directions. Just look at Vandy's list of current POTs research projects -they're all over the map! I feel a tangent coming on. I'll stop.

Good luck, Lemons. Hope your new approach will help you to feel better physically and mentally.

[chipper]

Thank you for all of this information. So glad that you have answers and have such a good doctor. Your determination to get better is truly inspiring and I am looking forward to your next post.

[Chaos]

lastly are you sure that urinary sodium is an accurate measure of blood volume?

When I saw this same dr. he used the urine volume as a measure of how much FLUID intake you had. He told me he wanted me to have at least 2500 mls in a 24 hour urine. The urine sodium was not measured as a volume. He wanted a urine sodium around 170.

He gave me a lot of the same advice but the one very interesting difference was he told me " You can NOT keep trying to push thru everything and you need to learn to pace yourself better." The last time I saw him he told me to take an 8 week leave of absence from work as well. Perhaps with you "young ones" he expects you to recover better than he assumes we "older" folks will do. He's told me repeatedly that he doesn't think I'll get over this and will need to learn to live with it/accept it and learn to accomodate it. So it seems he doesn't think that everyone will be able to exercise their way out of this although he does stress the importance of daily exercise even to me.

Like others have said above, I think it depends what "flavor" of POTS you have how you need to treat it and what the outcome will be.

[Lemons2lemonade]

*

[Lemons2lemonade]

Lynne, hopefully the next round of shots will help! I hope you start to feel better soon! I feel like staying positive with pots is half the battle, so to speak

[Lemons2lemonade]

Chaos, yeah, on my lab result sheet it says ( U Na Volume--1800) and then measured in mL, perhaps he was talking about a different value of the same ratio. My urine sodium concentration was 80 mmol/ liter, and urine sodium MML was 146

[ramakentesh]

I brought up vanderbilt, we discussed it, and yes I have read the research, and I am convinced that the pathways of pots are more complicated than angiotensin ii levels

LOL:

To say that you are convinced leads to the conclusion that you have fully accepted one particular theory about the etiology of POTS as correct. Next the sentence suggests that Vanderbilt's only contribution to research on POTS is angiotensin II (which was actually a finding of a completely different research group). And then it suggests that this research somehow suggested it applied to all POTS patients (which it does not) and that it has a primary role in the etiology (which again it doesnt).

Im glad you have certainty. Back in 2005 during my second relapse when my doctor told me definitively about the causes of POTS and the potential for an actual cure i went from being very sick to 100% well in about four months. So a positive outlook is a great thing. ofcourse, like just about everything that we are told definitively about the etiology of POTS, it never turns out to be definitive.

I myself am not convinced about any of the etiological mechanisms suggested for POTS because none of the researchers are either. Ive never spoken to a doctor or researcher in the last 3 years that has suggested theory as fact. I dont know how anyone can actually be convinced about the etiology when the research is contradictory, paradoxical and often with small cohorts of patients.

I think that Vanderbilt's contribution to POTS research should not be brushed aside. They have published more work on POTS than just about any other research group. Mayo have even accepted some of Vanderbilt's mechanisms as their own working theory (beta 2 receptor disfunction). it is true that none of teh groups agree and you might find patients of other facilities just as ardently defending their own doctor's opinion. And one could be right another wrong. And I remember the melatonin thing - however mestonin was a discovery in part down to Vandy.

But the point is that you cannot say definitively either way at this stage.

NBut your also right in that me arguing with you about this or that on an internet forum isnt going to get me out of the relapse... LOL

[ramakentesh]

As for getting over POTS - I am almost certain you will. All the evidence suggests that most experience complete to partial improvement.

i wasnt for a second suggesting that Dr Goodman's treatment plan or advice wont be very beneficial for you.

And again you are correct that research papers are just that - theories with some supporting evidence that get peer reviewed because they have sufficient evidence. This does not make their findings fact.