Current fav MCAS med: Phenibut

Blake2e

Senior Member
Messages
153
Likes
315
An excellent mast cell stabilizer. Potent at small doses and very well absorbed. And since my body somehow deactivates drugs proportionally to how sensitive my MCAS is, it’s great, as I don't have to take monstrous dosages for the drug to work. It’s also one of my favorite nootropics. Gives a calm energy and focus. Pure mental stimulation and quiets/relaxes the body.

Not something that should be used daily but great for a 2-3 days per week, any more than that will lead to physical/mental dependency. Graduated from school and just got 2 jobs (part time and full time) and it’s been great for work (currently 3x/wk soon will be 5 days/wk). Been using this drug in this manner for almost 2 full months now. I credit Phenibut for allowing me to rock my job interviews. More than a few places told me outright that they favored me a great deal more than other more experienced/skilled job applicants. Amazing what happens, when allergies aren’t bogging down brain function. One of the worst things MCAS did to me is make me forget how magnetic and likable the personality I developed over the years is.

A few scoops in my stainless steel water bottle and I take sips as needed throughout the day. Normal dose is 250mg (1 scoop) and I take 3-5 grams. Takes about 40-60 minutes to come on and continues to work for 6-10 hrs, and for me its mast cell stabilizing effect very often carries over till the next day, slowly dissipating. At low doses it’s mentally stimulating and at very large doses it’ll put you to sleep. So start very small and adjust as needed.

I’m due for my next Rituxan and my symptoms have really been flaring this past month. Phenibut is my saving grace, quiets my MCAS and secondary POTS better and more consistently than any of the often prescribed and recommended MCAS drugs, while also stimulating the mind just right. Without it I may not have been able to work as I have been. On some days my brain is just non-functioning and I feel too sick to do anything, but Phenibut has very consistently brought me out of that.

[I'll post an update on my log about my flaring symptoms and Rituxan, and that I was finally tested for POTS --results strongly indicate I have it-- as well my antimicrobial treatment for my dysbiosis I've been doing, carnivore diet, recent blood tests etc at a later day. I'll give an update once I get an official diagnosis for secondary POTS. and when my brain works well enough again to write such a post.]

On days I take Phenibut, I don’t need my antihistamines or steroids. I used to use Phenibut a lot in the past and stopped when my MCAS became much too severe to tolerate anything in any amount, but it’s earned a spot back in my arsenal for being the best mast cell stabilizer I’ve tried and a great nootropic. I rank it well above both cromolyn and ketotifen.
 
Last edited:

Hip

Senior Member
Messages
12,968
Likes
23,938
Interesting. Are you saying that you find phenibut reduces your MCAS symptoms? I could not find any studies showing that phenibut works for MCAS, so presumably this is your own discovery?

Do you satisfy these diagnostic criteria for MCAS, by the way?



A few scoops in my stainless steel water bottle and I take sips as needed throughout the day. Normal dose is 250mg (1 scoop) and I take 3-5 grams. Takes about 40-60 minutes to come on and continues to work for 6-10 hrs, and for me its mast cell stabilizing effect very often carries over till the next day, slowly dissipating. At low doses it’s mentally stimulating and at very large doses it’ll put you to sleep. So start very small and adjust as needed.
You put 3-5 grams into your water bottle. Is that your total daily dose, which you take in divided doses throughout the day by taking sips from your bottle?
 

Blake2e

Senior Member
Messages
153
Likes
315
Interesting. Are you saying that you find phenibut reduces your MCAS symptoms? I could not find any studies showing that phenibut works for MCAS, so presumably this is your own discovery?

Do you satisfy these diagnostic criteria for MCAS, by the way?
I fit all the criteria aside from the serum tryptase. I have other markers of MCAS to fullfil that criteria. I only get a small increase in serum tryptase when testing at my base (when my MCAS is more mild, my MCAS is constant thanks to all my allergies though over past 3 months did have some moments of normalcy thanks to Rituxan) vs when I'm more reactive (MCAS symptoms are more in the moderate range).



You put 3-5 grams into your water bottle. Is that your total daily dose, which you take in divided doses throughout the day by taking sips from your bottle?
Yep thats how much I usually take for a day. Often I take a little less, meaning I dont finish the bottle that day. I sip every 30-60 minutes until I reach the desired effect. Its very easy to take too much and end up sedated, so watching the clock is a good idea.


Edit: Phenibut is a GABA molecule with a phenyl ring attached, the latter plays a big role in its nootropic/mental effect. GABA is a mast cell stabilizer that could even prevent anaphylaxis. I put this together by knowing what class of drug Phenibut is and its mechanism of action while researching mechanisms that could decrease mast cell degranulation. Then trying it myself thus confirming what I thought. I couldnt find any good studies directly stating Phenibut's use for allergies, but last week while searching for studies I did come across some self-reported individual experiences citing this specific benefit on reddit and other forums. Some info about Phenibut.

Studies are great but not all answers are contained in them, critical thinking plays a big role in managing such an immunological condition.

Edit #2: If you try this let me know on this thread or via PMs how it goes.

Edit #3: Phenibut used for motion sickness. Motion sickness is histamine induced via H1 receptor activation, essentially a type of allergy.
 
Last edited:

Blake2e

Senior Member
Messages
153
Likes
315
Isn't Phenibut opiod-like and addicting? Or is that something else? Is there any danger in taking phenibut?
Phenibut does not work on opioid receptors so it isnt an opioid or like it. People with opioid addiction actually take this when getting off of opioids since it helps withdrawal by easing anxiety/depression.

There is the potential for physical addiction, as using it more than 2 days/per week especially on consecutive days over a long period of time increases chances of forming a physical dependence as stated in my original post. Mental dependence could result from simply liking it so much you don't want to experience your sick mental state anymore. Though I've personally never experienced the mental component of addiction with this. If youre the kind with a genetic or personality that predisposes to getting addicted very easily then you should proceed with caution.

I take Phenibut every other day for a total of 3 days per week when I work. The only urge I have regarding this is to take it on off days when my symptoms are too much of a hassle and the current batch of meds I'm rotating arent helping enough. However resisting this urge is easy because there so many other things I have that can help. When I start working 5 days a week, I'll be adding L-Theanine or other drugs like antihistamines and mast cell stabilizers for the days I have work and wont be taking anymore Phenibut than I currently am.

L-Theanine is another mast cell stabilizer and nootropic thats similar to Phenibut but with none of the potential downsides. Its an amino acid derivative of L-glutamine. You could take this on your off days.

As long as you take Phenibut only 2 days a week and not on consecutive days, risks are very low. I do it 3 days a week so I'm being a little risky. Also watch your doses, Phenibut is low toxicity but nausea and feeling sedated sucks. Check out the links in my 2nd post for more info.

5 or so years ago I used it every day for 2 weeks and had to deal with withdrawal, which is essentially a lot of anxiety. I dropped it cold turkey and withdrawals passed after about a week for me, didnt interfere with school but definitely made me less charismatic/attractive to girls. Aside from the anxiety, it wasnt that bad. If this happens just taper the dose and take L-Theanine.

Phenibut is a great drug, especially for MCAS, but it isn't meant for daily use.

(Disclaimer: I guess this might be needed. I am not a physician and what I wrote is not medical advice just something I tried that's been working for me and you are fully responsible if you take Phenibut.)
 
Last edited:

Thinktank

Senior Member
Messages
1,577
Likes
2,001
Location
Europe
@Blake2e , i often use baclofen, it's a bit similar to phenibut in it's action of binding to GABA-B receptors.
I've reported on the anti-inflammatory effect of baclofen before, which might well be prevention of mast cell degranulation.

I too suffer from lots of allergies and MCAS, i'll give phenibut a try.
I have to start a job soon so i'm looking for ways to get my MCAS and allergies in check. The inflammatio is making my brain so out of order it's difficult to type.
 

Gingergrrl

Senior Member
Messages
14,679
Likes
43,793
I've never tried either med (Phenibut or Baclofen) and my understanding is that both are calcium channel blockers which I have to avoid. I am only mentioning this in case it is relevant for anyone else. Good to see you @Blake2e and looking forward to reading your update on Rituximab once you write it.
 

Blake2e

Senior Member
Messages
153
Likes
315
@Blake2e , i often use baclofen, it's a bit similar to phenibut in it's action of binding to GABA-B receptors.
I've reported on the anti-inflammatory effect of baclofen before, which might well be prevention of mast cell degranulation.

I too suffer from lots of allergies and MCAS, i'll give phenibut a try.
I have to start a job soon so i'm looking for ways to get my MCAS and allergies in check. The inflammatio is making my brain so out of order it's difficult to type.
Awesome, keep tabs on how it works for you on this thread or PM me. If you have any questions feel free to ask.

I've never tried either med (Phenibut or Baclofen) and my understanding is that both are calcium channel blockers which I have to avoid. I am only mentioning this in case it is relevant for anyone else. Good to see you @Blake2e and looking forward to reading your update on Rituximab once you write it.
Calcium channel blocker aspect is likely part of the reason why I like Phenibut, it eases the palpations and tachycardia I get. I never tried Baclofen, I get the sense that its sedating. Does your avoidance of CCBs have to do with your POTS?

Good to see you too Ginger. I'm getting my Rituxan infusion as I'm writing this. I'll post an update on my log soon.
 
Last edited:

Hip

Senior Member
Messages
12,968
Likes
23,938
@Blake2e, you might consider changing the thread title to one which attracts more attention, such as say "MCAS symptoms greatly reduced by phenibut supplement".

See page top right to change thread title:
1561581742695.png

If phenibut can help others with MCAS, it would be good to make people aware.
 

Blake2e

Senior Member
Messages
153
Likes
315
@Blake2e, you might consider changing the thread title to one which attracts more attention, such as say "MCAS symptoms greatly reduced by phenibut supplement".

See page top right to change thread title:
View attachment 33356

If phenibut can help others with MCAS, it would be good to make people aware.
That's a good idea but then I feel I would need to re-write this to be more formal and add references to give it a strong conceptual backbone.
Edit: I used to write research papers and that sort of thing is super tedious.
 
Last edited:

Gingergrrl

Senior Member
Messages
14,679
Likes
43,793
Calcium channel blocker aspect is likely part of the reason why I like Phenibut, it eases the palpations and tachycardia I get. I never tried Baclofen, I get the sense that its sedating. Does your avoidance of CCBs have to do with your POTS?
My avoidance of CCB's (or meds/supplements that act as a CCB) is b/c I have an autoantibody that blocks the N-type Calcium Channel. I saw several Neuros about this in 2016 (when it was discovered that I had tested positive for it on a Mayo Panel, and still test positive for it now) and they all said that I need to avoid CCB's.

I had a horrific reaction when I tried a CCB for POTS in 2014 but did not know why at that time. I take a beta blocker for POTS which works well for me, plus my POTS is basically in remission, although if I REALLY overdo certain things, I am still capable of triggering an episode.

I'd heard of people doing well with CCB's for MCAS (and if I did not have the LEMS autoantibody, this might be true in my case as well, I really don't know)? But whenever I read a post re: a new med or supplement, I always Google it to see if it falls into any of the categories that I need to avoid (like CCB's). I am so glad that it is working well for you.

We are each so unique and there are meds that the Masto Society says to avoid that work very well for me and other meds that they say are okay which I do not tolerate :xeyes:.

Good to see you too Ginger. I'm getting my Rituxan infusion as I'm writing this. I'll post an update on my log soon.
I have written many posts in the past while getting IVIG or Ritux infusions and hope yours is going well!
 

Blake2e

Senior Member
Messages
153
Likes
315
My avoidance of CCB's (or meds/supplements that act as a CCB) is b/c I have an autoantibody that blocks the N-type Calcium Channel. I saw several Neuros about this in 2016 (when it was discovered that I had tested positive for it on a Mayo Panel, and still test positive for it now) and they all said that I need to avoid CCB's.

I had a horrific reaction when I tried a CCB for POTS in 2014 but did not know why at that time. I take a beta blocker for POTS which works well for me, plus my POTS is basically in remission, although if I REALLY overdo certain things, I am still capable of triggering an episode.
Thats rough. I started using Hawthorn Berry extract again with good success for palpation and tachycardia. But with those autoantibodies youre options become real limited when it comes to helping your POTS, so no Hawthorne berries. Fortunately, Rituxan is doing its magic for you.

What symptoms do you get when you take CCBs?


I'd heard of people doing well with CCB's for MCAS (and if I did not have the LEMS autoantibody, this might be true in my case as well, I really don't know)? But whenever I read a post re: a new med or supplement, I always Google it to see if it falls into any of the categories that I need to avoid (like CCB's). I am so glad that it is working well for you.

We are each so unique and there are meds that the Masto Society says to avoid that work very well for me and other meds that they say are okay which I do not tolerate :xeyes:.
I've tried CCBs, beta blockers and nitroglycerin in the past, I initially thought my MCAS was a heart problem b/c of palpitation/tachycardia, and hawthorn berries worked much better for me. Youre right there is quite a bit of difference b/w different cases. When thinking about this and writing posts or articles, its hard to not get overly pedantic.

I have written many posts in the past while getting IVIG or Ritux infusions and hope yours is going well!
It went nice and easy. I made sure to stay off of Dexamethasone for a long time so the Xolair could thoroughly reset my intolerance/allergy to it and it worked pretty well today. Have my 12th IVIG tomorrow, should go well too as I'm also doing Dexamthesone for another couple of days.
 

Gingergrrl

Senior Member
Messages
14,679
Likes
43,793
But with those autoantibodies youre options become real limited when it comes to helping your POTS, so no Hawthorne berries. Fortunately, Rituxan is doing its magic for you.
I'm not familiar with Hawthorne Berries but at the moment, I no longer have symptoms of POTS unless I REALLY overdo it and trigger an episode (which at this point is less than once a month). I suspect the POTS would return (even if it would be less severe) if I were to stop taking Atenolol (which I have no intention of stopping) and it is completely unknown what would happen to me overall if I were to stop the Rituximab.

So I use the term "remission" even though I do not feel it is really accurate for lack of a better term. I do not consider it "cure" or even "recovery" unless I were back to pre-illness levels and no longer taking all of these meds. I have stopped many of the meds that I was taking back in 2015 with no return of symptoms but I still take seven meds, plus many supplements, plus Ritux infusions are now 2x/year (which keep my B cells at zero).

What symptoms do you get when you take CCBs?
I actually only tried a true CCB once (Diltiazem) in 2014 and it dropped my BP dangerously low (it was already 80/50 at that time) and I threw up and almost fainted. My (then) Cardio told me never to take it again and to stick with the Atenolol. But I had no idea that I had the Calcium Channel autoantibody at that time (and it is possible that I didn't have it yet b/c it was first tested in 2016).

I've tried CCBs, beta blockers and nitroglycerin in the past, I initially thought my MCAS was a heart problem b/c of palpitation/tachycardia, and hawthorn berries worked much better for me. Youre right there is quite a bit of difference b/w different cases.
I tried Nitro (also in 2014 and maybe into 2015) but overall I could not take it b/c you had to have a systolic BP of at least 90 to safely take it and mine was usually 80 at that time. So even though my (then) Cardio wanted me to try it, my BP was too low. I tried everything for POTS (at that time) and beta blockers were the best option for me (plus Midodrine).

It went nice and easy. I made sure to stay off of Dexamethasone for a long time so the Xolair could thoroughly reset my intolerance/allergy to it and it worked pretty well today. Have my 12th IVIG tomorrow, should go well too as I'm also doing Dexamthesone for another couple of days.
I also do not tolerate Dex (Decadron) and have never tried Xolair. The meds I am on now are working well but my goal is to eventually taper off most of them. I hope your IVIG went well (and I never did Ritux and IVIG so close together b/c I am not able to tolerate that much fluid). Do you ever get third spacing of fluid due to MCAS or does this not happen to you?
 

Blake2e

Senior Member
Messages
153
Likes
315
I'm not familiar with Hawthorne Berries but at the moment, I no longer have symptoms of POTS unless I REALLY overdo it and trigger an episode (which at this point is less than once a month). I suspect the POTS would return (even if it would be less severe) if I were to stop taking Atenolol (which I have no intention of stopping) and it is completely unknown what would happen to me overall if I were to stop the Rituximab.
What triggers an episode, intense exercise?


I actually only tried a true CCB once (Diltiazem) in 2014 and it dropped my BP dangerously low (it was already 80/50 at that time) and I threw up and almost fainted. My (then) Cardio told me never to take it again and to stick with the Atenolol. But I had no idea that I had the Calcium Channel autoantibody at that time (and it is possible that I didn't have it yet b/c it was first tested in 2016).
I tried Verapamil, it just felt like a vice on my heart forcefully slowing my heart rate down. Felt awful, like a heavy weight was placed on my heart. Hawthorn berry was perfect for me, very effective yet also very gentle and felt good.

Have you tested that CCB intolerance against drugs/sups with mechanisms of action that is not mainly calcium channel blocking? In other words, drugs/sups that only have a small CCB effect.


I tried Nitro (also in 2014 and maybe into 2015) but overall I could not take it b/c you had to have a systolic BP of at least 90 to safely take it and mine was usually 80 at that time. So even though my (then) Cardio wanted me to try it, my BP was too low. I tried everything for POTS (at that time) and beta blockers were the best option for me (plus Midodrine).
Nitroglycerine didnt work out too well for me neither. Dropped my low BP even lower, made my pallor face somehow even more pale and it didnt do much for my palpations/tachycardia.



I also do not tolerate Dex (Decadron) and have never tried Xolair. The meds I am on now are working well but my goal is to eventually taper off most of them. I hope your IVIG went well (and I never did Ritux and IVIG so close together b/c I am not able to tolerate that much fluid). Do you ever get third spacing of fluid due to MCAS or does this not happen to you?
No, never experienced third spacing of fluid. The IVIG I just got went fine. Though in the future I'm going to make sure I do it 2 or so weeks after Rituxan,. Less chance of body clearing out the Rituxan "autoantibodies" before they can fully do their thing.
 

Learner1

Administrator
Messages
3,905
Likes
7,011
Location
Pacific Northwest
Phenibut is not benign. It should be taken only after careful consideration and if the benefits outweigh the risks. THC and alcohol have created problems requiring hospitalization, it is addictive and it can cause depression and psychosis.

https://www.ncbi.nlm.nih.gov/pubmed/30852710

https://www.therecoveryvillage.com/phenibut-addiction/phenibut-and-alcohol/#gref

Overdoses quite reliably trigger dose-dependent cognitive impairment, drowsiness, confusion, bradycardia, hypotension, hypothermia, respiratory depression, and variable levels of coma. If you use too much it’s common to fall asleep at random and to experience drunken-like impairment of motor skills. Phenibut-only overdoses are rarely lethal, but if enough is used to severely impair a person’s mental status and/or if coma is present, they should be monitored in a medical setting since respiratory support is occasionally used and it’s important to prevent vomit aspiration.

Some of the other potential effects of an overdose are mydriasis, agitation, bizarre uncontrolled behavior, hallucinations, and delusions. It’s most often associated with reduced heart rate and blood pressure, but there are reports of hypertension and tachycardia occurring, sometimes leading to treatment with a benzodiazepine.

From: https://thedrugclassroom.com/video/phenibut/#Safety
I was prescribed it for sleep, for a short time, and it did help, but I got off it as soon as I could, as I found other solutions for sleep.. I found no relief of my MCAS symptoms.

@Blake2e Can you please supply references for phenibut as a mast cell stabilizer? I can't find anything on this.
 

Blake2e

Senior Member
Messages
153
Likes
315
Phenibut is not benign. It should be taken only after careful consideration and if the benefits outweigh the risks. THC and alcohol have created problems requiring hospitalization, it is addictive and it can cause depression and psychosis.

https://www.ncbi.nlm.nih.gov/pubmed/30852710

https://www.therecoveryvillage.com/phenibut-addiction/phenibut-and-alcohol/#gref


I was prescribed it for sleep, for a short time, and it did help, but I got off it as soon as I could, as I found other solutions for sleep.. I found no relief of my MCAS symptoms.

@Blake2e Can you please supply references for phenibut as a mast cell stabilizer? I can't find anything on this.
Phenibut is not without its risks as Ive mentioned (and provided links) several times in this thread. Comparing it to THC and alcohol is a bit ridiculous as those only cause more problems.

Phenibut abuse, aka taking too much, is of course going to be rife with problems. Phenibut truly shines when used infrequently and at lower doses. I dont know what kind of doctor prescribed it (last I checked it was only a prescription drug in some Eastern European countries) but he "prescribed" it incorrectly. For it to put you to sleep you need to take large doses aka abuse it and if you do that you should fully expect problems as that not the proper use for this.

Refer to my reply to Hip about Phenibut as a mast cell stabilizer.
 

Gingergrrl

Senior Member
Messages
14,679
Likes
43,793
What triggers an episode, intense exercise?
I am not even sure at this point what is considered "intense exercise" but I am sure that it is not something that I would ever be capable of doing :jaw-drop:?!

It makes me think of that joke about the patient asking the doctor, "Once I am better will I be able to play the violin?" and then the punch line is that they never played the violin to begin with. (Clearly I can't remember the full joke :bang-head: :xeyes: ... but the point was that I was never capable of intense exercise even before I got sick so I am definitely not capable of it now). Hope that made sense?

What triggered my (delayed) episode was lifting my dog into and out of the car by myself a total of 4x going to a vet appt. I had delayed neck pain that was so excruciating that it led to me having to lie flat w/ice on my neck for several days. It caused headache, nausea, pain shooting down my arm, and that night triggered a POTS episode when I got up very quickly and then bent down to pick up my phone charger. I rarely have episodes like this and learned my lesson and will never again pick my dog up into the car by myself (unless it was a medical emergency to get her to an ER vet).

So, no... definitely not intense exercise :xpem:! That is why I use the word "remission" loosely and wish I could come up w/a better word. Is there a word that would describe what I can do now: breathe normally, take care of myself independently, stand and walk without wheelchair, drive, all allergic reactions to food are gone, POTS is gone unless I do something stupid (like above) to trigger an episode, etc, but I still do not have the stamina or muscle strength that I did pre-illness, my neck pain is worse than ever, I cannot climb stairs or do exercise beyond walking, and after about 2-3 days of "activity" I must have at least one full day to rest?

What would this be called? I want to answer your question, Blake, b/c you've asked me a few times but it is so challenging for me to explain it b/c it is confusing even to me!

Have you tested that CCB intolerance against drugs/sups with mechanisms of action that is not mainly calcium channel blocking? In other words, drugs/sups that only have a small CCB effect.
I have not tested them since several Neuros told me to avoid them back in 2016. But I do not do well with Magnesium (which has CCB properties).

Nitroglycerine didnt work out too well for me neither. Dropped my low BP even lower,
The actual packaging for Nitro says that it is not safe for anyone whose systolic BP is lower than 90. So it truly was not safe for me when my (former) Cardio wanted me to try it (around 2014 or 2015). He thought I might have had "microvascular angina" (at that time) but he was wrong.

No, never experienced third spacing of fluid. The IVIG I just got went fine. Though in the future I'm going to make sure I do it 2 or so weeks after Rituxan,. Less chance of body clearing out the Rituxan "autoantibodies" before they can fully do their thing.
That is great that you have not had third spacing and it was a big problem for me and part of why I can't drink a huge amount of fluid and why my IV infusion speeds must be very slow. I could never have done Ritux and IVIG back to back like you did b/c of the amount of fluid. I avoided doing it that way for other reasons, too. I think I always had at least two wks between them (when I was doing IVIG). I stopped IVIG in July 2018 (almost exactly one year ago) but still doing maintenance infusions of Ritux.

Can you please supply references for phenibut as a mast cell stabilizer? I can't find anything on this.
I also never heard of Phenibut as a mast cell stabilizer on any Mast Cell group that I posted on (in 2015 & 2016). People in those groups had endless things that worked as their MCAS meds (and rescue meds) but I never heard of anyone mentioning Phenibut (but maybe b/c it is not available in the US)? Although those boards had people from around the world and not just the US... so I am not really sure? All I know is that when I Googled it and it said it was a CCB, I forgot all about it and never looked any further.
 

Blake2e

Senior Member
Messages
153
Likes
315
I am not even sure at this point what is considered "intense exercise" but I am sure that it is not something that I would ever be capable of doing :jaw-drop:?!

It makes me think of that joke about the patient asking the doctor, "Once I am better will I be able to play the violin?" and then the punch line is that they never played the violin to begin with. (Clearly I can't remember the full joke :bang-head: :xeyes: ... but the point was that I was never capable of intense exercise even before I got sick so I am definitely not capable of it now). Hope that made sense?

What triggered my (delayed) episode was lifting my dog into and out of the car by myself a total of 4x going to a vet appt. I had delayed neck pain that was so excruciating that it led to me having to lie flat w/ice on my neck for several days. It caused headache, nausea, pain shooting down my arm, and that night triggered a POTS episode when I got up very quickly and then bent down to pick up my phone charger. I rarely have episodes like this and learned my lesson and will never again pick my dog up into the car by myself (unless it was a medical emergency to get her to an ER vet).

So, no... definitely not intense exercise :xpem:! That is why I use the word "remission" loosely and wish I could come up w/a better word. Is there a word that would describe what I can do now: breathe normally, take care of myself independently, stand and walk without wheelchair, drive, all allergic reactions to food are gone, POTS is gone unless I do something stupid (like above) to trigger an episode, etc, but I still do not have the stamina or muscle strength that I did pre-illness, my neck pain is worse than ever, I cannot climb stairs or do exercise beyond walking, and after about 2-3 days of "activity" I must have at least one full day to rest?

What would this be called? I want to answer your question, Blake, b/c you've asked me a few times but it is so challenging for me to explain it b/c it is confusing even to me!
Intolerance to mild exertion is what it sounds like to me. But still a world of improvement from before. Exercise (and exerting myself mildly for even a few minutes) gets my MCAS/secondary POTS going more than anything else.

Youre making sense to me. Sounds like you still have at least some autoantibodies for POTS present and/or your nervous system hasnt recovered yet.

I have not tested them since several Neuros told me to avoid them back in 2016. But I do not do well with Magnesium (which has CCB properties).
Then I wouldnt experiment with any sort CCB-like drugs/sups/herbs too.

That is great that you have not had third spacing and it was a big problem for me and part of why I can't drink a huge amount of fluid and why my IV infusion speeds must be very slow. I could never have done Ritux and IVIG back to back like you did b/c of the amount of fluid. I avoided doing it that way for other reasons, too. I think I always had at least two wks between them (when I was doing IVIG). I stopped IVIG in July 2018 (almost exactly one year ago) but still doing maintenance infusions of Ritux.
Im only on 30g of IVIG, pretty small dose compared to what you used get.

I also never heard of Phenibut as a mast cell stabilizer on any Mast Cell group that I posted on (in 2015 & 2016). People in those groups had endless things that worked as their MCAS meds (and rescue meds) but I never heard of anyone mentioning Phenibut (but maybe b/c it is not available in the US)? Although those boards had people from around the world and not just the US... so I am not really sure? All I know is that when I Googled it and it said it was a CCB, I forgot all about it and never looked any further.
Phenibut is an OTC drug in the US, anyone can order it online. It was first synthesized in Russia and it is available only through a doctor in Russia and some of the Baltic countries.

I research and experiment a lot. I put the conceptual pieces of what stabilizes mast cells together with drugs that act along those mast cell receptors, combined that with my extensive knowledge of nootropics, led me to giving Phenibut a try for MCAS. Phenibut for me, calms all my MCAS-related symptoms. It decreases angioedema in face and gut, my secondary POTS symptoms, peripheral neuropathy, flushing, nausea, vomiting, diarrhea, dermatographia and my skin returns to my normal color (instead of being pale or red). And the best part: improves clarity of mind (lessens migraines and brain fog/fatigue).

I kinda dont want to research all the studies I found before I decided to try Phenibut. I used to write research papers in school (which is what it would be if I posted my reasoning) and writing them is tedious and time/energy-consuming. I dont think it should be too hard to follow my reasoning of why it works based on just a little googling of things I've already mentioned in this thread. But if enough people say in this thread they really want me to post studies to support use of Phenibut for MCAS then I'll do it.
 
Last edited:

Gingergrrl

Senior Member
Messages
14,679
Likes
43,793
Intolerance to mild exertion is what it sounds like to me. But still a world of improvement from before. Exercise (and exerting myself mildly for even a few minutes) gets my MCAS/secondary POTS going more than anything else.
I've definitely had major improvements and I am incredibly grateful for them. I use the word "remission" but it does not quite feel like the right word b/c I still have many limitations that did not exist pre-illness (like the ability to climb stairs or lift my dog into the car without being incredibly sick and in pain afterward) but I can't find a better word.

It's not that I can't do mild exertion vs. that it specifically depends what the exertion is. Nothing triggers my MCAS now, and I no longer have allergic reactions to food, and that is truly in remission (but I have not tested dyes or anything that caused me anaphylaxis in the past). Versus the POTS is in remission a solid majority of the time but it can still be triggered if I overdo it.

Youre making sense to me. Sounds like you still have at least some autoantibodies for POTS present and/or your nervous system hasnt recovered yet.
I'm so glad that I was making sense :xeyes: ... I definitely still have autoantibodies (still positive on several Cell Trend tests but much fewer than pre-treatment, and still positive for Calcium autoantibody and for GAD65 (although much lower positive).

Then I wouldnt experiment with any sort CCB-like drugs/sups/herbs too.
Definitely agree and I will not be doing this!

It decreases angioedema in face and gut
I wonder if what you are calling "angiodema in the gut" is the same as what I am calling "third spacing" (in the abdomen). There can also be third spacing into the lungs (pulmonary edema) but this only happened to me one time and there were several factors involved. Abdominal third spacing is much more common (for me).

But if enough people say in this thread they really want me to post studies to support use of Phenibut for MCAS then I'll do it.
I don't personally need to see studies re: Phenibut and it is not something that I would ever try, both b/c my MCAS is in remission and b/c it is a CCB which I cannot take. I was just agreeing with Learner that I had never heard of anyone using Phenibut as a Mast Cell Stabilizer after several years of posting on Masto boards and hearing about all kinds of experiments. I have no doubt that it works for you, and would be interested if it worked for others, but regardless, it is not something that I would personally try.