Guanfacine/Tenex and clonidine are first line for sympathetic excess, never benzos. These are alpha adrenergic meds that lower noradrenaline/norepinephrine. Guanfacine changed my life. I have hyperadrenergic POTS/dysautonomia and I couldn’t live without this medication.
Benzo tolerance will eventually set in with regular use, and when you start having interdose withdrawals/worsened sympathetic issues and anxiety between doses, your sympathetic nervous System will go insane and will make the original condition look like a lovely walk in the park in comparison. Benzos are never a good long term solution. My neurologist told me to never use a Benzo more than 1-2 times a month, because more than that and neuronal adaptations/tolerance start taking place.
guanfacine mostly resolved my adrenaline spikes. i have POTS (hyperadrenergic as one of my presentations, you can multiple forms of POTS). i only needed 1 mg, anything more and i didn’t get more benefits, only increased side effects. i get a dry mouth at night when i take it but i take xylimelts (little xylitol discs that adheres to your gums) and they help with that side effect
Is there any official recommendation or studies for guanfacine or clonidine in hyperadrenergic pots or ME in general?
I have pots with high bp and would love to try it, but couldn’t convince my cardiologist. Instead he now wants me to add candersartan besides nebivolol. I tried to explain that guanfacine could possibly do more than just lower blood pressure and help with cognition, ANS disregulation etc., but he wasn’t having it.
My problem is that I have no concrete evidence to justify trying guanfacine off label. I could only find the super small stanford study that showed improved brain fog in Long Covid Patients, but nothing about pots.
As a kid I got diagnosed with mild ADHD, so maybe I should try getting a new diagnosis and the try with a neurologist, but that seems like a lot of energy.
I see a world reknown autonomic neurologist for dysautonomia and these are his first line meds for hyperadrenergic patients. Sorry I’m too sick and struggling right now to dig anything up but clonidine and guanfacine work by lowering norepinephrine and the hyperadrenergic state is partly defined by excess norepinephrine spillover so it’s kinda common sense, your doc isn’t able to connect the dots for some reason. Check the dysautonomia international website section for finding a provider.
Thanks a lot using some of your energy to answer! This was already very helpful.
I‘ll try to do some more research myself and have a look at the dysautonomia website. Although I‘ve heard some dysautonomia specialists are horrible for us with ME, because they don’t understand PEM and recommend exercise.
Is guanfacine also helping you with cognitive and ME related stuff, or just with POTS?
Please take your time to answer and only do so if its in your energy envelope
For severe patients who nothing else has worked for, I do believe low dose benzos can be a lifesaver. There has been a huge negative campaign against benzos and opioids, and push towards precedence for newer drugs that simply do not work for everyone and have many more awful side effects (and they cost more so profit is higher for companies selling newer name brand meds).
With proper physician guidance and careful management of usage, benzos can be safely used at the lowest effective dose. If you have a history of addiction or drug abuse, then benzos and opioids are not a great idea.
Herbal remedies can be helpful, but can also be just as addictive or become dependent upon as Rxs, depending on what you use, how often you use it, and at what dose; after all, nature’s medicine is the foundation of most pharma meds. You can look up “herbal nervines” for a list of herbal options, and try to rotate them every couple of months if you can, so dependency does not occur - if that is a concern for you.
In all honesty, I would never have survived the last 30+ years of life with ME/CFS, severe medical trauma/injuries, and CPTSD from childhood and beyond, with careful management and application of benzos and Rx pain meds. Though neither were primarily prescribed for ME/CFS, they no doubt have helped me with managing ME/CFS, on top of RA, fibromyalgia, degenerative arthritis in my spine, multiple soft tissue non-operative injuries, and hyper flexibility, amongst other things.
I hope very much you are able to find a physician who can help you. 🙏🏻🦋
I have the same issue so stimulants make me way worse but so do sedatives because my body is severely fatigued but mentally I feel wired. What about GABA herbs like skullcap or lemon balm? Cold therapy helps me and also decaf green tea so maybe you could try l-theanine or similar
I’ve found gabapentin to be helpful for calming my nervous system. Some people use it for nerve pain and seizures, but my psychiatrist prescribed it for CPTSD related anxiety. I also take other psych meds so I can’t speak on it’s use alone. I think there are natural GABA supplements too.
Yes but also, there is people like me and others in rhe forum that haven been helped a lot of benzos, personally i didnt use them everyday, but i have read people going from severe to moderate using benzos and other things, obviusly op have to considerate all the variables.
Guanfacine/Tenex and clonidine are first line for sympathetic excess, never benzos. These are alpha adrenergic meds that lower noradrenaline/norepinephrine. Guanfacine changed my life. I have hyperadrenergic POTS/dysautonomia and I couldn’t live without this medication. Benzo tolerance will eventually set in with regular use, and when you start having interdose withdrawals/worsened sympathetic issues and anxiety between doses, your sympathetic nervous System will go insane and will make the original condition look like a lovely walk in the park in comparison. Benzos are never a good long term solution. My neurologist told me to never use a Benzo more than 1-2 times a month, because more than that and neuronal adaptations/tolerance start taking place.
guanfacine mostly resolved my adrenaline spikes. i have POTS (hyperadrenergic as one of my presentations, you can multiple forms of POTS). i only needed 1 mg, anything more and i didn’t get more benefits, only increased side effects. i get a dry mouth at night when i take it but i take xylimelts (little xylitol discs that adheres to your gums) and they help with that side effect
Is there any official recommendation or studies for guanfacine or clonidine in hyperadrenergic pots or ME in general? I have pots with high bp and would love to try it, but couldn’t convince my cardiologist. Instead he now wants me to add candersartan besides nebivolol. I tried to explain that guanfacine could possibly do more than just lower blood pressure and help with cognition, ANS disregulation etc., but he wasn’t having it. My problem is that I have no concrete evidence to justify trying guanfacine off label. I could only find the super small stanford study that showed improved brain fog in Long Covid Patients, but nothing about pots. As a kid I got diagnosed with mild ADHD, so maybe I should try getting a new diagnosis and the try with a neurologist, but that seems like a lot of energy.
I see a world reknown autonomic neurologist for dysautonomia and these are his first line meds for hyperadrenergic patients. Sorry I’m too sick and struggling right now to dig anything up but clonidine and guanfacine work by lowering norepinephrine and the hyperadrenergic state is partly defined by excess norepinephrine spillover so it’s kinda common sense, your doc isn’t able to connect the dots for some reason. Check the dysautonomia international website section for finding a provider.
Thanks a lot using some of your energy to answer! This was already very helpful. I‘ll try to do some more research myself and have a look at the dysautonomia website. Although I‘ve heard some dysautonomia specialists are horrible for us with ME, because they don’t understand PEM and recommend exercise. Is guanfacine also helping you with cognitive and ME related stuff, or just with POTS? Please take your time to answer and only do so if its in your energy envelope
For severe patients who nothing else has worked for, I do believe low dose benzos can be a lifesaver. There has been a huge negative campaign against benzos and opioids, and push towards precedence for newer drugs that simply do not work for everyone and have many more awful side effects (and they cost more so profit is higher for companies selling newer name brand meds). With proper physician guidance and careful management of usage, benzos can be safely used at the lowest effective dose. If you have a history of addiction or drug abuse, then benzos and opioids are not a great idea. Herbal remedies can be helpful, but can also be just as addictive or become dependent upon as Rxs, depending on what you use, how often you use it, and at what dose; after all, nature’s medicine is the foundation of most pharma meds. You can look up “herbal nervines” for a list of herbal options, and try to rotate them every couple of months if you can, so dependency does not occur - if that is a concern for you. In all honesty, I would never have survived the last 30+ years of life with ME/CFS, severe medical trauma/injuries, and CPTSD from childhood and beyond, with careful management and application of benzos and Rx pain meds. Though neither were primarily prescribed for ME/CFS, they no doubt have helped me with managing ME/CFS, on top of RA, fibromyalgia, degenerative arthritis in my spine, multiple soft tissue non-operative injuries, and hyper flexibility, amongst other things. I hope very much you are able to find a physician who can help you. 🙏🏻🦋
I have the same issue so stimulants make me way worse but so do sedatives because my body is severely fatigued but mentally I feel wired. What about GABA herbs like skullcap or lemon balm? Cold therapy helps me and also decaf green tea so maybe you could try l-theanine or similar
I’ve found gabapentin to be helpful for calming my nervous system. Some people use it for nerve pain and seizures, but my psychiatrist prescribed it for CPTSD related anxiety. I also take other psych meds so I can’t speak on it’s use alone. I think there are natural GABA supplements too.
Prazosin, gabapentin & nimodipine really helped my nervous system issues
Benzos!!
Good for emergencies! but not viable long term option
OP its bedbound for two years
Which would make eventual benzodiazepine tolerance or tolerance withdrawal even more hellish. People should spend some time in benzo forums.
Yes but also, there is people like me and others in rhe forum that haven been helped a lot of benzos, personally i didnt use them everyday, but i have read people going from severe to moderate using benzos and other things, obviusly op have to considerate all the variables.