Propanodol in ME/CFS

[Cort]

Propanadol is a a beta blocker that turns down the activity of the sympathetic nervous system.

It appears to effect neurons in the

in the brain stem structure LOCUS COERULEUS. Cell bodies based in brain stem and project through the brain. Activation of these results in increased vigilance

(If there's anything I have its increased vigilance.)

It's a drug Dr. Light is interested in because his study found that the receptors that measure sympathetic nervous system activity in the body went banana's after ME/CFS patients underwent a mild exercise test. (The healthy control's levels didn't budge).

Anyone tried propanadol?

 

[rosebud]

My doctor tried that for me, but I found that coreg another beta blocker works better -

rosebud

 

[nina_online]

I had a severe CFS crisis (not as bad as Mike Dessin's but on the way) after my 2nd daughter was born in 2007. I had not been diagnosed w/ CFS yet so was just seeing regular docs and shrinks (since it was assumed to be post-partum depression).

I was severely hypervigilant w/ sensory overload. A combo of Klonapin and propanalol helped.

I discovered later that the endocronologist had overlooked my low normal B12 level, low enough that the lab result included a note that at that level, a certain percentage of people experience neurological symptoms. B12 supplementation (along with FolaPro) really helped the sensory overload, hypervigilance and physiological anxiety.

Cort, I saw on Freddd's personal story thread that you gave up on B12 because methylB12 was hard on you. In my opionion, anyone with any neurological symptoms (including all PWC) should consider B12 supplementation.

Given that methylB12 caused problems, I wonder if it is because it is a methyl donor and you are COMT +/+? In any case, you could try adenosyl (or hydroxy, although that goes against Freddd's position that hydroxy is not an active form and competes/interferes with absorption of active cobalamin. (I follow Yasko/Rich. I am hoping that between Fred, Rich and Richard Deth that inconsistancy can be resolved.)

 

[nina_online]

Also, during that crisis, when I was in complete sensory overload (bedridden in dark room) with a freaked out SNS, there was one thing that would stop the symptoms completely and make me feel normal. I hesitate to mention it:

hydrocodone

It was prescribed as a painkiller for the c-section.

Beyond the post-surgical period I used it sparingly, just for when I had to leave the house for an appt with my young daughter, and on the evening of the 4th of July so I could accompany my family to watch the fireworks.

Believe me, I was tempted to use it more, because it ws the magic bullet. But I read about what prolonged use does to your body. As I recall, your body stops making endorphins, which is the last thing any of us needs.

The miraculous effect of hydrocodone on my severe sensory overload and hypervigilance made me wonder what the underlying mechanism is, and whether that reveals anything about the SNS crises (sensory overload/hypervig) PWCs undergo.

By the way, since PWCs should avoid acetominophin (depletes glutathione), anytime you are given vicodin, always ask for vicuprofin instead. (I have recently read that they recommended or mandated that acetominophin be removed from such narcotics so this may become a moot issue.)

 

[InvertedTree]

I was put on Pindolol about 10 days ago after being diagnosed with POTS.

It's also supposed to damp down the SNS.

It gave me a little bit of energy initially.

It's the first beta blocker I've tried. Hopefully it will allow me more functioning as I'm housebound and unable to drive very far because I'm afraid of fainting while driving (FWD).

 

[Cort]

I've heard really divergent things about beta blockers - good for some, disastrous for some others.

That was fascinating about the hydrocodone! That is really something. Just based on my very limited knowledge of narcotic painkillers - it does seem that like Klonopin what it does do - probably in a very different way - is turn down activity in the central nervous system. I've seen several studies now that suggest that narcotic painkillers are fairly effective in fibromyalgia.

I'm going to try Fred's B12 program - standard one - if that doesn't work and we'll take it from there. Thanks for the suggestion.

 

[acer2000]

Ironically I was on metoprolol (Toprol XL) when I got CFS. Some of the problem with beta blockers is that they can increase brain fog. For some people, their reaction to that side effect is they try to compensate by "amping" themselves up more, further exhausting themselves in the long run.