Low dose beta blocker for P.O.T.S. is WORKING

[Sushi]

The most interesting thing she told me about POTS...I asked her why the doctors at Johns Hopkins focused so much on CFS patients who were hyper-mobile. She explained that it was because CFS patients with 'floppy' joints also have floppy veins that don't vasoconstict well. Interesting.

Is anyone else with POTS hyper-mobile?

I am hyper-mobile but have OI (NMH) rather than POTS. I also think that the vein valves tend to prolapse as the heart valves often do with hypermobile EDs. I find that cotton, compression knee socks help a lot if I need to be on my feet much.

Best,
Sushi

 

[Questus]

I am hyper-mobile but have OI (NMH) rather than POTS. I also think that the vein valves tend to prolapse as the heart valves often do with hypermobile EDs. I find that cotton, compression knee socks help a lot if I need to be on my feet much.

Best,
Sushi

Sushi, my mother is hypermobile and 92 years old and in excellent health..Go figure. So being hypermobile is probably not that relevant to most peoples health.

I just found that it's association with POTS to be amazing. Could not have imagined that loose joints would or could also suggest loose veins and vascular system. My response to Dr. Klimas when she told me..."That blows my mind." (I always thought it just me good at yoga.)

I've been meaning to order the compression socks. I've had them many times when I was in the hospital pre-POTS and always threw them away.

Good luck with your OI.

Best, Questus

 

[Sushi]

(I always thought it just me good at yoga.)

I've been meaning to order the compression socks. I've had them many times when I was in the hospital pre-POTS and always threw them away.

Good luck with your OI.

Best, Questus

I used to teach yoga!

Here are some really nice compression socks. They are cotton and extremely comfortable: http://www.brightlifedirect.com/BRA....html?osCsid=afe976b51f4e22edeb688c391daf09fa

I found that I needed one size larger than the chart, but I am tall. Figures, most hypermobile ones have long limbs. EDs is a collagen dysfunction so it affects everything made of collagen.

Best,
Sushi

 

[BEG]

Just FYI:

I'm seeing a cardiologist who told me that Bystolic (beta blocker) can lower blood pressure. I had given it up anyway. He prescribed 1/2 tablet of Atenolol (25 mgs.) I found that was too much; it made me very sleepy and lethargic. Now I cut the tablet in quarters and am doing well again. After many minutes of walking and doing household tasks this morning, my heart rate was in the upper 60's, nice and steady. There was no tachycardia.

Regarding compression socks, my primary doc says to get a compression between 20 - 30. I don't know what he bases that on, however. I haven't tried them yet.

Yes, I am hypermobile, too. For as long as I can remember . . . So is my daughter who is also sick.

 

[Esther12]

I hope you keep finding things which are more helpful for you BEG. Have you been checked out for an EDS diagnosis? That seems to be a significant way in which hypermobility and POTS are linked, and it might offer some more useful clues.

Good luck with everything.

 

[BEG]

I hope you keep finding things which are more helpful for you BEG. Have you been checked out for an EDS diagnosis? That seems to be a significant way in which hypermobility and POTS are linked, and it might offer some more useful clues.

Good luck with everything.

Thanks, Esther. I've tried to find the definition of EDS in the latest posts, but apparently I'm missing it. What does it mean?

 

[Esther12]

Ehlers Danlos Syndrome (type III is the hypermobility type).

If you do fulfil the criteria, it can be quite helpful for improving how a lot of doctors view your condition - but there are still sometimes problems even then.

 

[deleder2k]

Has anyone tried this lately? Very interesting with respect to the research being done at Haukeland. Looks like nebivolol improves endothelial function and increases Flow Mediated Dilatation (FMD):

For example, nebivolol was shown to be superior to atenolol in improving small artery distensibility index [15], parameters of oxidative stress [16], flow-mediated dilation of the brachial artery [17, 18], and plasma concentration of asymmetric dimethyl arginine (ADMA) [18], an endogenous inhibitor of NO production that has been associated with cardiovascular risk [19].

Source: http://www.ncbi.nlm.nih.gov/pubmed/26177892

"In the atenolol group FMD remained unchanged at the end of the 4-week treatment, but in patients treated with nebivolol FMD showed a significant increase by the end of the treatment period (3.9 ± 2.7% vs. 5.6 ± 2.9%, p = 0.047) leading to a significantly higher value compared to patients treated with atenolol (5.6 ± 2.9% vs. 3.4 ± 3.2%, p = 0.041)."

Source: http://www.ncbi.nlm.nih.gov/pubmed/16187009

 

[bertiedog]

I have some hyper mobility but also have adrenergic POTS and still benefit hugely from 20 mg Propananol twice daily plus 5mg Prednisoslone and occasional Fludrocortisone when its hot and I have been sweating a lot.

Been taking the Propananol for over 16 years now and no side effects at all. It's been a brilliant drug for me. I also have good energy as long as I don't overdo things which does happen from time to time.

Prior to the combo of Fludro and Propananol there was a time when I couldn't be upright but didn't know why. Even now If I stand too much and if its hot my legs are terrible, Pain develops and also a very uncomfortable sensation builds up but when I get home if I put my legs up, put on some tight leggings and go on my oxygen concentrator for 40 minutes then I can almost feel normal after. Also I will need to eat something to boost my blood sugar in order to feel better.

I feel I am extremely lucky to find that these treatments really help me to lead some sort of a life.

Pam

 

[deleder2k]

Very interesting to hear your experience with pain if you elevate your legs. I have the exact same problem. Alcohol is the only drug that I've tried that helps with that. I wonder whether nebivolol can help to dilate the blood vessels in the legs. Perhaps that would do something about the pain (and cramps for me).