What Are The Next Steps?

[RunningWild]

My primary care doctor keeps asking me this. Like maybe I will magically come up with the answers... But I don't know what comes next.

My Electrophysiologist threw some ideas, like I could go to Boston to see a Dr. friend of his. That's kind of a stretch.

My Dr. at Cleveland Clinic basically gave me a list of meds (that i previously had bad reactions to) and sent me on my way

I had vascular surgery to reduce blood pooling in my legs (success, by the way) but POTS is still an issue.

I'm just now stopping my birth control to see if anything changes. It's my last resort.

Where do we go when there are no more answers? Do we just continue on the path of meds and lifestyle changes until we wake up one day and POTS is gone?

[misstraci]

Running Wild, I'm sorry. Sorry that you aren't doing well and feel out of options, I can really relate because I've felt like this a lot lately. I'm happy that your vascular surgery was a success!!! That is a positive thing in the picture. Maybe coming off the birth control will also help. I don't have any suggestions but I wanted to tell you that I can really relate and I hate it and I wonder too if I'll just wake up one day and be well.

[Mytwogirlsrox]

What vascular surgery did you have? If you don't mind sharing

[misstraci]

I've been thinking about your question you pose about what is the next step. I'm wondering what things can we try ourselves that don't necessarily involve doctors because in my case, they aren't really working with me or understanding, etc.

1. I know exercise is something I/we should prioritize and stick to to see if it helps and shows improvement.

2. A change in diet; gluten free, sugar free, caffeine free, dairy free, etc.

3. Trying the mast cell combo (H1 H2) over the counter drugs (I'd really like to try but would need someone else's information as I'm not too familiar with this)

4. Positive thinking, meditation, prayer, tai chi, qi gong, yoga.

anyone else have any suggestions. Maybe without doctors help or with???

[yogini]

Do you live near any of the doctors on the DINET list? I definitely wouldn't assume that going off of your birth control is a last resort. There are just so many medications and treatments out there and mroe being developed all the time. If one beta blocker doesn't work, it could be worth trying another or a lower dose. Also, sometimes you need combinations of things or a baby lower dose, or trying it in combination with a medicne that increases your BP. The list of combinations just goes on and on.

I also think you are lucky that your drs at least believe you have POTS and are willing to consider your input. There are a lot of people that aren't even believed. I was able to get treatment by suggesting things to my dr. It takes a little work to read through the literature, but it is worth keeping trying.

[RunningWild]

What vascular surgery did you have? If you don't mind sharing

Cleveland Clinic dx'd venous insufficiency in my legs/pooling when standing

my vascular surgeon here in Pittsburgh confirmed it was a bad case for a 23yr old. I had greater saphenous vein ablations on both legs, and phlebectomy on my calves.

i went from having purple feet all the time, to having two normal pink legs/feet. The change there is really spectacular, but it really didn't do much for the POTS symptoms.

[Leigh8]

_{runningwild, I love the lyrics in your signature. What are they from?}

[RunningWild]

It's Blackout by Breathe Carolina. Very fitting for me

And to yogini-

They do believe that I have POTS, but none of my doctors are willing to try new things, to step away from the norm- which hasn't worked for me. We are our own best advocates, but its so tiring to constantly hunt for answers when we're so tired as it is.

[Leigh8]

Hahah very fitting for me too. Story of my life, trying not to black out!!!!!