@Deltrus Thanks for posting your story and I hope you don't mind a few questions...
I actually ended up getting a toxicity response to Benadryl but have an extremely positive response to Atarax. Have you ever taken Atarax and if so, what was your response?
What is Phenibut?
I also have pain/inflammation in my right shoulder, arm, neck and now often behind my right eye. I know what started this (an injury to a medication plus a car accident so it is not a mystery in my case) but would love to find something to alleviate this.
What dose Selenium do you take? I used to take 200 mcg a day (IIRC) for thyroid issues but stopped when I eliminated a whole bunch of supplements due to MCAS. Has selenium lowered your viral titers or made any noticeable differences for you?
I am convinced acetylcholine plays a huge role in my illness and just did some kind of antibody test but do not know the results yet or what to do for it. I seem to have a very small window of tolerance for meds that affect acetylcholine in either direction. But I do very well with Atarax as my rescue med for MCAS and have never had a single side effect from it and it has been a miracle drug that has saved me from never having to use the EpiPen.
I tried ceterizine, a h1 antagonist, which didn't do much, that is why I believe the good effects I get from diphenhydramine are from the anti-cholinergic effects. I don't believe Atarax has anti-cholinergic effects. But it does have some other interesting stuff, I'm not familiar with the drug tho so I can't really comment.
Phenibut is basically gabapentin that also has a slight very smooth dopamine effect. It relieves nerve pain and lowers inflammation, for me at least.
It is legal without a prescription. It also acts as a gaba b agonist but less so at lower doses. I've tried baclofen, which is only a gaba b agonist, and it doesn't give me the huge boost and antiinflammatory effect that phenibut does, so I assume that the inhibition of voltage gated calcium channels is the mechanism, like gabapentin.
Phenibut is famous for being an unsustainable drug for social events, it makes people very energetic, social and aware of social cues etc. But it gets tolerance fast and is addictive. You don't wanna take it more than once a week at normal doses.
I think I can say that phenibut has a synergistic effect with diphenhydramine in modulating the nervous system. I just tried 25 mg diphenhydramine and 500 mg phenibut, and it really helped me, when normally I have to take 1.2g+ of phenibut. I usually get tolerance to phenibut super fast so perhaps this way I can get more out of it.
Honestly don't look into the selenium too much, I actually haven't had success with it yet, but was just doing some theorycraft.
Today in addition to the phenibut / diphenhydramine stack, I used
this device over my sacrum, and it actually gave me so much energy and clarity. The ICES pemf device seems to stimulate the nervous system in different ways depending on where you put it. If I put it around my neck, then I can feel pulses up my cranial nerves, but if I put it over my sacrum it gives a warm sensation around my pelvis and seems to energize me and give a nootropic boost. Some areas seem to pulse to my brain but I get better results putting it over areas that don't do that.
I think the way to fix sympathetic/parasympathetic nervous system imbalances would be to use an anti-cholinergic to lower the parasympathetic nervous system, or an adrenergic receptor antagonist to lower the sympathetic nervous system, and then use the ICES device to stimulate the underactive one of the two. Add in prednisone or phenibut/gabapentin to lower inflammation. I think the selfhacked guy has a higher sympathetic nervous system because he gets really good effects stimulating his vagus nerve with the device, which would increase the parasympathetic nervous system.
I'm still trying to figure out the best procedure for me. I don't know if diphenhydramine will get tolerance. I don't know if this lower dose of phenibut + diphenhydramine daily will get tolerance. I don't know if the ICES device will be reliable putting it in that spot. I'm still testing these things out. But I do know that at least this once I seem to be getting great effects. And phenibut at higher doses alone has given me fatigue relief around once a month for over a year. I only used it once a month because tolerance and withdrawal can be bad otherwise.
Oh and I also took uridine which normally gives me horrible fatigue, but it doesn't seem to give fatigue with the phenibut/diphenhydramine stack. Uridine is used for many things
as seen here so I'm going to try to keep taking it.
I've been disappointed for 2 years trying different strategies to stop my CFS. A lot of times things get tolerance quickly (lavender and phenibut), or things only work once, or I think something is working and I'm just having a small remission. I know with this recent thing I'm getting a bit closer but I need at least 2 weeks testing to give a verdict. I probably shouldn't be posting about it at all until I test longer. Still it is worth noting that this protocol worked very well for at least 2.5 days.
If you got a bad response from benadryl then perhaps you would benefit from increasing the parasympathetic nervous system with the ICES pemf device on the vagus nerve like that selfhacked guy does. (since benadryl would normally decrease the parasympathetic nervous system)
ACTUALLY atarax is a
α1-adrenergic (Ki = ~300 nM)
receptor antagonist according to wikipedia. That means it should lower the sympathetic nervous system and make it easier for the parasympathetic nervous system to activate. That is something interesting to note.
It would be interesting if sympathetic / parasympathetic imbalance in either way causes CFS.
Too much sympathetic and the vagus nerve doesn't have enough anti-inflammatory stimulation, causing potential autoimmunity. Also, it doesn't get enough "rest and digest" mode to recover.
Too much parasympathetic and the vagus nerve constantly sends "rest and digest" signals and is vulnerable to infection from viruses because of how antiinflammatory acetylcholine is.