LTCBL

I completed the survey many months ago and am wondering if any recommendations or finings are available. Any new information would be great!

Thank you

LTCBL

Has anyone had success with addressing erectile dysfunction?

On 1/25/2021 at 10:41 AM, hbuhbuhb said:

Curious what medication supplements and therapies have worked for you?

For me zyrtec, N-Acetyl Cysteine, Alpha-lipoic acid, and iron and the sauna have been the only thing that helps

Have any men with POTS found treatment for ED w/o making you dizzy, like the 2 popular oral pills do?

Has anyone with POTS been on a cruise successfully and have recommendations?

LTC Bill

Has anyone been treated with IVIG ( immunoglobulin via IV) for POTS?  There's a (blood) test processed in Germany by Cell Trend that looks for auto-antibody markers to determine if IVIG might be helpful to you. This will help your area POTS MD in administering IVIG.  Research was reported by Dr. David Kem, Univ of OK and OK VA.

LTC Bill

Thank you Katie, I was hoping the infra red light heating in small doses might work.

Do any members with POTS use infra red heat lights to warm up bathroom (during quick shower/sponge bath)without negative affects? Any benefit of using white vs. red lamps?

LTC Bill

Has any POTS patient ever experienced syncope while sitting down in a comfortable room? If so, how did you treat it, did you continue to have some dizziness and headaches for over 24 hours?

LTC Bill

Does anyone experience eye strain and headaches primarily when wearing eye glasses, possibly due to POTS?

LTC Bill

Thanks for the very helpful input so far re. the rowing machines!

LTC Bill

Can any one suggest the type of rowing machine (for home use) that was helpful re. POTS? Also any tips on how to ease into using it?

I'm happy to include you in my morning prayer time tomorrow

Thank you for sharing this!

LTC Bill

My breathing problems seem to be during the day time when conversing. It could be 5 minutes or 15 and I become winded and leads to some fatigue. My PCP atributes it to respiratory muscle fatigue. Not sure if I can do anythng about this other than be proactive when possible. I have POTS.

Thanks for feed back re. SOB while talking. The article on breathing is VERY useful and knowing others with POTS expereince this also helps.

Has anyone legally utilized medical marijuana to treat POTS symptomswith success? If so, pros and cons?

Have any members with POTS experienced shortness of breath after talking 10-15 minutes? If so, any suggestions? Thank you!

Thank you for your helpful feedback re. compression stockings and any side affects!

Has anyone with POTS experienced negative side affects when beginning to use knee high pressure stockings (low pressure stocking worn during the day only)? Have they been helpful to those using them?

Can this POTS documentary be forwarded to non DINET members to view? I tried copying and pasting the site and the DINET window stated you have to be a member to access this. Is there a way around this so it can be shared with friends and family?

LTC Bill

Due to heat (and humidity) intolerance from POTS, are there fun activities people have had success with, especially those outside?

Has Gatorade been helpful to reduce fatigue for POTS, especially in the summer?

LTC Bill