Doing Better Over All

[jump]

Hello all,

I had life-disruptin POTS symptoms for 5+ years before finally having a bit of a "crash" and then getting diagnosed about a year and 8 months ago. After diagnosis, things improved a small amount when I started making lifestyle changes (more water, more salt, etc). But last winter things were really hard for me, and I felt very discouraged; in addition to POTS, I have severe chest pain in the winter (I don't know if it's related or not), and the pain combined with the debilitating POTS stuff had me really down. I was worried I would never be able to live an even close to normal life.

But then I saw a specialist in September, and I'm happy to report that for the first time in several years I feel ok. Definitely not "normal" - I can't work full time, for example - but working part-time I feel like I have a mostly-normal life now. I can do most of the things I like to do, in moderation. I still have some pain issues, but they are not as severe. I still have some weakness and a lot of fatigue, but the dizzyness and other POTS symptoms are hardly noticeable from day to day (partly, I think, because I have gotten used to it and don't notice when my heart races, but also partly because the tachycardias are fewer and less severe).

So, over all I am feeling much more optimistic than I was this time last year. I just wanted to put that out there, for those of you who are newly diagnosed or really struggling - you never know when things might turn around. I know I could have another 'crash' at any time, but I am grateful for this respite for as long as it lasts. I hope others find some relief as I have.

wishing everyone the best, as always,

jump

[Lenna]

Hi,

So glad to hear that things are better for you! Can you share what things the specialist implemented or suggested that have made a difference for you?

[janiedelite]

Thanks for sharing, and I'm so glad you are experiencing improvement! I'd be interested in any changes/medications the specialist implemented with you also.

[summer]

Hi Jump!

So glad to hear that you are doing better. Thanks for posting this. It really is encouraging to hear from those whose symptoms are improving.

Interesting that you mentioned chest pain in the winter. I was just saying this to my husband today. I had hardly any CP during the summer, and now, it's back. I think I might start a new thread about this to see if others experience the same.

Take care. Remember to pace yourself. Hope you continue to improve!!

Summer

[Brye]

What lifestyle changes did you make that you felt really made a difference? Love hearing that you're doing better. I love it when people take the time to write back during their good times as well!!

Brye

[jump]

Hi all,

The changes I made were not anything especially unusual for the treatment of POTS, I think it was just a question of weeding through all the possible treatments (I tried a lot of things that did not help very much) before finding the constellation of treatments that do seem to work. And I think some of it was just good luck. But here's what has been most helpful:

* Slowing down the pace of my life considerably, and recognizing that I have serious limits on the amount of energy I have. Planning ahead for these limitations and respecting them.

* Drinking lots of water and eating more salt.

* Making moderate exercise a priority (and by moderate, I mean very moderate.... a slow walk, etc. For me, regular exercise is more important than trying to do something strenuous or for a long period of time).

* Making sleep a HUGE priority

* Making good nutrition a priority

* Taking Vitamin D, Vitamin B-complex, and magnesium supplements

* Taking Florinef

* Following up to make sure my other health concerns (thyroid disease, celiac disease) are under control

* Then I think another big part of feeling better was just coming to terms with the fact of chronic illness and chronic pain, and learning to self-soothe and use things like meditation, talking to friends, and attending to my spiritual needs to cope with some of the symptoms that I have no control over.