So I went to a cardiologist some time back asking for a beta blocker to bring my tachycardia down that was diagnosed by a CFS specialist.
The cardiologist to my initial displeasure didn't think betablockers were the right thing for me because he thought my heart rate at rest was low enough but he did suggest I try Pyridostigmine which for me made this a very useful consultation and I left feeling quite elated.
Apparently it is a drug that some doctors have been using 'off-label' for unusual cases of fatigue. He couldn't easily explain to me the entire mechanism of action only that he had patients with unresolved fatigue that improved on it and had heard abouts its value from colleagues at an academic conference for cardiologists.The correct dosage is difficult to determine but you could start with 60mg daily and go up to 120mg if needed.
Now I'm not sure if the mechanism of action actually directly reduces the heart rate or if it helps the blood vessels function better. The cardiovascular system is a pretty complex system of plumbing. From what I gather pyridostigmine can help constrict blood vessels at the right time which increases blood pressure when you need it - i.e. standing up quickly.
So I think it takes pressure of the heart because with more efficient blood vessel function the heart isn't under as much pressure to force blood pressure up to compensate by elevating heart rate. I presume this would lead to better blood circulation in the body which would improve muscle function and possibly benefit cognition. It is all about getting blood moving around the body more effectively so better blood vessel function may help not just with orthostatic intolerance but possibly with cognition, cold/heat intolerance, dizziness, tachycardia and possibly a whole host of other bodily functions.
It has minimal side-effects and seems to be a highly focused drug that only works when needed rather than hitting your body with a sledgehammer like beta-blockers would.
My experience has been quite valuable in treating orthostatic intolerance and anecdotal observation is that my heart rate seems a bit steadier and less prone to the tachycardia events that my CFS specialist picked up on.
That said I can't provide a full summary of my symtpoms because I've been trying to push isoprinosine and Valcyte to treat persistent HHV6 and these drugs can cause a worsening of symptoms until the virus is suppressed. So with so many drugs I'm taking It's difficult to work out what each pill is doing.
But for someone with CFS there seem to be many problems that cause multiple layers of fatigue but taking Pyridostigmine is something you could discuss with your doctors that might make life a bit more comfortable. Of course you have to be careful with pacing. If you do get a sudden lift from pyridostigmine you have to be careful and re-evaluate how much energy you can use before over-doing it.
Anyway here's an article that discusses this drug in a bit more detail.
http://www.ninds.nih.gov/news_and_events/news_articles/news_article_orthostatic_hypotension.htm
The cardiologist to my initial displeasure didn't think betablockers were the right thing for me because he thought my heart rate at rest was low enough but he did suggest I try Pyridostigmine which for me made this a very useful consultation and I left feeling quite elated.
Apparently it is a drug that some doctors have been using 'off-label' for unusual cases of fatigue. He couldn't easily explain to me the entire mechanism of action only that he had patients with unresolved fatigue that improved on it and had heard abouts its value from colleagues at an academic conference for cardiologists.The correct dosage is difficult to determine but you could start with 60mg daily and go up to 120mg if needed.
Now I'm not sure if the mechanism of action actually directly reduces the heart rate or if it helps the blood vessels function better. The cardiovascular system is a pretty complex system of plumbing. From what I gather pyridostigmine can help constrict blood vessels at the right time which increases blood pressure when you need it - i.e. standing up quickly.
So I think it takes pressure of the heart because with more efficient blood vessel function the heart isn't under as much pressure to force blood pressure up to compensate by elevating heart rate. I presume this would lead to better blood circulation in the body which would improve muscle function and possibly benefit cognition. It is all about getting blood moving around the body more effectively so better blood vessel function may help not just with orthostatic intolerance but possibly with cognition, cold/heat intolerance, dizziness, tachycardia and possibly a whole host of other bodily functions.
It has minimal side-effects and seems to be a highly focused drug that only works when needed rather than hitting your body with a sledgehammer like beta-blockers would.
My experience has been quite valuable in treating orthostatic intolerance and anecdotal observation is that my heart rate seems a bit steadier and less prone to the tachycardia events that my CFS specialist picked up on.
That said I can't provide a full summary of my symtpoms because I've been trying to push isoprinosine and Valcyte to treat persistent HHV6 and these drugs can cause a worsening of symptoms until the virus is suppressed. So with so many drugs I'm taking It's difficult to work out what each pill is doing.
But for someone with CFS there seem to be many problems that cause multiple layers of fatigue but taking Pyridostigmine is something you could discuss with your doctors that might make life a bit more comfortable. Of course you have to be careful with pacing. If you do get a sudden lift from pyridostigmine you have to be careful and re-evaluate how much energy you can use before over-doing it.
Anyway here's an article that discusses this drug in a bit more detail.
http://www.ninds.nih.gov/news_and_events/news_articles/news_article_orthostatic_hypotension.htm
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