do long protracteds have MCAS?

[[bw...]]

Hi i am just putting this theory out there . I am currently in a setback 6 years out from taking "pepcid".

I think I am one step closer to the truth...

The conclusion came down to histamine.
Some leading scientists in the histamine field say that up to 17% of the world suffer from an underlying mast cell / histamine issue. (Yes you read that correctly)

To put it frankly , MCAS can occur at any age. And the most common triggers are Stress, drugs (in our case benzos), vaccines,  virus ans infections, that ignites a beast within us due to the severe trauma experienced with benzo withdrawal.  If I was to show you a MCAS (mast cell activation syndrome) patient that has never taken benzos in their life you could bassically say that their experiences are just like yours. And vice versa. This also goes for the LYME,mold, antideppressant communities.  Its just like putting a key into a padlock.

Lets just take the antidepressant community for example. They share the same symptoms we do. The benzo communities always say "we have a disruption and downregulation of GABA when are 3, 4 or 5 years out...
I believe this to be competley false. Many antidepressants do not touch GABA but we share the same withdrawal experiences almost if not all, on par with them. .


Chemical sensitivties and moreso "food" sensitivities are just too common in the benzo withdrawal sphere to be ignored. Also shared by the AD, lyme, CFS Communities. I believe that There is something much larger at play here.

Now, lets discuss "setbacks".
A term used in benzo communities that they have been setback in their "healing". by taking a medication, an overexposure of stress or excercise or more so antibiotics,vitamins which sends them back into Periods of hightened withdrawal symptoms and sometimes back into what they describe as worse than ACUTE symptoms.

The same can be said for the MCAS community when they are exposed to certain chemicals or foods or have an anphylactic reaction.  Many if not all, continue to heal back to their "point or baseline" before the setback. I say this heavily,  the communities believe they head into "remission" again. They simply
Lie in wait ,until their next exposure which can induce another  "setback" and the cycle continues. Mast cells continue to become more sensitized and degrandulate waiting for the next exposure to happen again. Highly sensitized moving into a revolving door state.

As for theorys of causes of PAWS.
Canida / yeast overgrowth,  benzos destroy DAO, mold toxicity. Ive read it all.
And take it all with a grain of salt.

Where I believe the actual is underlying issue is, that these patients have mast cell issues and disease within them that they never knew about.  And the coincindental nature of it all is just too much to be ignored.

You can put down near every symptom of benzo withdrawal to histamine.

Neuropathy? Histamine. Since an increase of histamine levels in the CNS has been reported to produce analgesia in neuropathic pain states [5], the increase of pain threshold induced by the blockade of the H3R can be related to the regulation of histamine levels in the CNS. Hencing proving that heightened h3 histamine receptors cause neuropathy.

Psychosis, schizophrenia? Elevated release and metabolism of histamine was found in the brains of schizophrenia patients. Their medication is antipsychotic medications like seroquel,zyprexa which are powerful antihistamine blockers and dopamine antagnoists.

High anxiety? Histamine. When the body produces high amounts of histamine it releases adrenaline to control it.

Off balance? The vestibular symptom is densley packed with histamine. And inside the inner ear and sinuses

Headpressure? More like an excess Histamine headache. The whole headpressure I experience is the same headpressure I had during a covid infection. Many report this as a symptom of covid and many find relief with a drug called pepcid(famotidine) which is a powerful h2 histamine antag.
Hmm interesting that.... ?

Gi issues? Reflux? We know what happens when there is excess histamine in the body. It can produce reflux and bloat. (Benzo belly).

Cortisol rushes waking you up?
Well we know that histamine rises the most early mornings to wake you up. Many of us experience this during "withdrawal".

Many on the communities report feeling better at night. Their symptoms gradully reducing during the day goes by. . In mastocytosis patients, peak levels of plasma histamine were observed in the early morning with the lowest in the afternoon and evening.

All you have to do is research what symptom you experience followed by - histamine as a keyword.

Near everyone on the communities advocates to "have a low histamine diet".
Has anyone actually questioned this?  why is this? Why? Because it makes us feel better right?
A recent study done regarding benzo withdrawal it reported that up to 30% of people had food sensitivies after cessation of benzos.

First line of defense with people suffering MCAS is a combination of antihistamines. But not all,  like us. They have paradoxial reactions to the drugs that help them. Like in my case when I took pepcid. It put me into a now 6 month "setback." And I am 6 years off all benzos.   The other secondary defense in mcas patients is actually taking benzodiapines themselves. They almost in near all accounts report a massive reduction in symptoms, this is because benzos are one of the most powerful mast cell stablizers known.

Take this information as you may.
As soon as im a bit better i will be attending an immunologist to further test for MCAS. Which could possibly I believe could be the whole missing link in PAWS

 

 

[[Co...]]

Hello @[bw...] Welcome to BenzoBuddies.

You have posted your highly speculative introductory post to the appropriate location at our community. Thank you. It appears that this is a subject which is highly interesting and motivating to you. But, I wonder, could you include some references? It is difficult to critique your post without them.

 

[[Ha...]]

I've been doing a bit of research into MCAS myself recently and others have mentioned getting relief from DAO supplements, so I would say histamine definitely plays a part for many. I was actually considering getting tested for it myself. As mentioned the symptoms are very similar (my symptoms in bold)

 

Symptoms of Mast Cell Activation Syndrome and/or histamine intolerance are multi-systemic and can include:

Anxiety

Blood sugar instability (a.k.a. Hangry)

Depression

Extreme reactions to insect bites

Fatigue

Gastrointestinal Issues like abdominal pain, diarrhea, bloating, nausea, vomiting 

Headaches

Head pressure

Heart palpitations

Hives

Joint and muscle pain

Lightheadedness with standing

Nasal congestion

Pain with urination

Skin itching

Urinary frequency

https://www.drthalia.com/post/what-is-mast-cell-activation-syndrome-mcas

[[De...]]

Very Very interesting indeed.  I am 3 years off and in a "setback" due to a GI disturbance following allulose use.  Got better after three weeks only to have a severe reaction to a sandwich I ate.  Have been trying to quell the GI symptoms ever since and now trying an elimination diet but I strongly suspect histamine issues and possible MCAS.  I've decided to pursue a Functional and Integrative medicine approach as I do not want to go through a myriad of conventional medicine specialists and get no definitive answer.  I will follow this thread closely and report back as I can.

 

[[bw...]]

17% of the population...

https://www.rupahealth.com/post/what-is-mast-cell-activation-syndrome-mcas

 

Head pressure covid and use of h2 antihistamines -

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7336703/

 

Neuropathy histamine..

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7012972/

Chronic fatigue syndrome and histamine

https://pubmed.ncbi.nlm.nih.gov/8455468/

https://medium.com/@courtneynicolern/could-histamine-intolerance-be-the-underlying-cause-of-your-chronic-fatigue-syndrome-3d8531d9420e

Antibiotics increase risk of histamine intolerance.

https://endsickness.org/antibiotics-increase-risk-for-histamine-intolerance/

 

Some reading for all...

 

 

 

 

 

 

 

[[Ha...]]

I just took an antihistamine and seems to have helped calm me down. So think it's going to be my forward now. Look into an MCAS protocol of some sort.

Was the antihistamine you were taking helpful at all, before it set you back @[bw...]. Not looking at taking them long-term, but curious how you responded at 1st.

I should add, I don't think (or at least hope) that it's true MCAS, although it can be triggered by stress. But there definitely seems to be a histamine connection. At least in my case

[[bw...]]

On 07/09/2023 at 21:25, [[H...] said:

I just took an antihistamine and seems to have helped calm me down. So think it's going to be my forward now. Look into an MCAS protocol of some sort.

Was the antihistamine you were taking helpful at all, before it set you back @[bw...]. Not looking at taking them long-term, but curious how you responded at 1st.

I should add, I don't think (or at least hope) that it's true MCAS, although it can be triggered by stress. But there definitely seems to be a histamine connection. At least in my case

Hi there. Funny you ask me that because noone ever has.

Yes absoutley I had a alot of relief the first time I used famotidine. Almost like a minor benzo feeling. Very weird.

It stopped my reflux , which its predominatley for aswell. But upon cessation of the drug the reflux came back 10 fold. It was so extreme of constant daily regurgitating of hot acid in my throat. And I know what daily reflux is like but this was like no other Ive ever experienced. A severe rebound indeed.

I noticed the tables turning around day 7ish of use. I was really panicky one day. (Unlike me). And had alot of OCD.

I brushed it off and thouhht oh just some old benzo symptoms. Because it was truley behind me As i was doing quite well.

My anxiety just kept getting higher and higher by the days. And I never made the connection. It was 100% the pepcid. On closer research it works mildly on gaba. And if you go onto drug reviews and type in pepcid. There is 1000s of people saying how pepcid gave them panic attacks, severe OCD etc. I believe h1 antihistamines are alot safer. Its something about h2. Brain masr cells that are in connection with benzo WD. Definatley. I was never sensitivity to food. Or smells etc prior to withdrawal. Ever.

Be warned with pepcid(famotidine). Its no joke. My setback at 6yrs off was much much worse than my initial withdrawal and taper, I assure you.

Im just coming out of the setback now. Starting to have better days and windows of clarity.

 

 

[[Ha...]]

1 hour ago, [[b...] said:

Hi there. Funny you ask me that because noone ever has.

Yes absoutley I had a alot of relief the first time I used famotidine. Almost like a minor benzo feeling. Very weird.

It stopped my reflux , which its predominatley for aswell. But upon cessation of the drug the reflux came back 10 fold. It was so extreme of constant daily regurgitating of hot acid in my throat. And I know what daily reflux is like but this was like no other Ive ever experienced. A severe rebound indeed.

I noticed the tables turning around day 7ish of use. I was really panicky one day. (Unlike me). And had alot of OCD.

I brushed it off and thouhht oh just some old benzo symptoms. Because it was truley behind me As i was doing quite well.

My anxiety just kept getting higher and higher by the days. And I never made the connection. It was 100% the pepcid. On closer research it works mildly on gaba. And if you go onto drug reviews and type in pepcid. There is 1000s of people saying how pepcid gave them panic attacks, severe OCD etc. I believe h1 antihistamines are alot safer. Its something about h2. Brain masr cells that are in connection with benzo WD. Definatley. I was never sensitivity to food. Or smells etc prior to withdrawal. Ever.

Be warned with pepcid(famotidine). Its no joke. My setback at 6yrs off was much much worse than my initial withdrawal and taper, I assure you.

Im just coming out of the setback now. Starting to have better days and windows of clarity.

Glad you're starting to come out of it. Amazing really what can set us off, even years later. Thanks for the info, I'll tread carefully with them. I took cetirizene which is H1 and seems to be the most common in France 

[[Jo...]]

On 09/09/2023 at 07:54, [[H...] said:

Glad you're starting to come out of it. Amazing really what can set us off, even years later. Thanks for the info, I'll tread carefully with them. I took cetirizene which is H1 and seems to be the most common in France 

Did you find the cetirizine helped? 
 

benzo wd is 100% connected to histamine. 100%. They are potent mast cell stabilizers. Rebound histamine is probably what we all know to be ‘tolerance’. 

 

[[Ha...]]

5 hours ago, [[J...] said:

Did you find the cetirizine helped? 
 

benzo wd is 100% connected to histamine. 100%. They are potent mast cell stabilizers. Rebound histamine is probably what we all know to be ‘tolerance’. 

 

Yeah it did, calmed me down out of panic mode seemed to clear my head a little 

[[De...]]

On 09/09/2023 at 08:36, [[b...] said:

Hi there. Funny you ask me that because noone ever has.

Yes absoutley I had a alot of relief the first time I used famotidine. Almost like a minor benzo feeling. Very weird.

It stopped my reflux , which its predominatley for aswell. But upon cessation of the drug the reflux came back 10 fold. It was so extreme of constant daily regurgitating of hot acid in my throat. And I know what daily reflux is like but this was like no other Ive ever experienced. A severe rebound indeed.

I noticed the tables turning around day 7ish of use. I was really panicky one day. (Unlike me). And had alot of OCD.

I brushed it off and thouhht oh just some old benzo symptoms. Because it was truley behind me As i was doing quite well.

My anxiety just kept getting higher and higher by the days. And I never made the connection. It was 100% the pepcid. On closer research it works mildly on gaba. And if you go onto drug reviews and type in pepcid. There is 1000s of people saying how pepcid gave them panic attacks, severe OCD etc. I believe h1 antihistamines are alot safer. Its something about h2. Brain masr cells that are in connection with benzo WD. Definatley. I was never sensitivity to food. Or smells etc prior to withdrawal. Ever.

Be warned with pepcid(famotidine). Its no joke. My setback at 6yrs off was much much worse than my initial withdrawal and taper, I assure you.

Im just coming out of the setback now. Starting to have better days and windows of clarity.

Hello @bwhittters - How are you progressing?  Your story really fascinates me, as I'm 3 years off and was feeling AWESOME.  Then had some sort of GI disturbance presumably due to use of the sugar substitute allulose that sent me to the ER with abdominal pain and nausea.  I was given Zofran and only took a handful of doses and seemingly recovered 3 weeks later.  Three weeks after that suddenly started suffering from episodes of GI distress (nausea, and surging anxiety with bowel activity).  Still going on and so far Drs are stumped.  I'm thinking dysbiosis led to mast cell activation and histamine intolerance.  I've tried H1 antagonists but since all my Sx are GI related I don't think it helped much.  So afraid to try H2 blockers for all the reasons you cite.

You said you were coming out of it - Just wondering how long your recovery this time is taking?

Wishing you well and many thanks!

 

 

Edited September 14, 2023 by [De...]

[[We...]]

Following - very interesting! 

[[4M...]]

I think histamine is an issue with benzo withdrawal also. I'm always itchy. My beard, my hair, my back, my feet. Always itch. Never had this issue before I took a benzo. How do we fix it? I tried high dose quercetin for a month straight and it didn't help. I'm trying nettle now. I cant take antihistamines. They make me ten times worse the next day.

[[Wo...]]

Yes, I completely believe that I have a huge histamine issue. I can usually pull myself out of a histamine flare in a few days with a very low histamine diet. This flare/wave, however, is not responding to the low histamine diet and I am back to reacting to all foods. I have all the histamine symptoms right now and have to get on a plane tomorrow and fly home which I am not looking forward to in the raging histamine storm from hell.

So over this! I am 5 years off. My windows are amazing I feel 100% but I get the flares (and the last three have been more like waves because more severe) every month or so. I am not sure what to do at this point. I am also perimenopausal and know that hormones can be at play as well. But, yeah, it's exhausting. 

[[Ga...]]

I wanted to get tested for MCAS, but my allergist does not believe in it?!  I believe my long time headaches are histamine related.  Lately with the weather cooling down, my headaches have become almost constant in the morning.  If I am lucky, they will slowly fade away as the day goes on.  I have had allergy tests, sinus surgery, MRI/MRA/EEG recently and all is good.  If my headaches would cease and desist, I could write a success story.

Hugs to all,

 

GG

[[De...]]

Hello Everyone!  Well I have been digging deep on this histamine thing as I'm certain I'm in the thick of it.  Feeling a bit better on the low histamine diet but eating this way is EXHAUSTING.  Basically 80% of the foods I used to eat are off limits.  How can anyone get full nutrition on such a diet?

Anyway my nephew found this author, Dr. Ben Lynch who wrote a book called "Dirty Genes".  I'm devouring the book right now and it goes through several common gene variants which when dysfunctional (which he calls "dirty") can result in a myriad of symptoms and disabilities.  He advocates a clean diet and certain vitamins and supplements to correct the dysfunctional gene.  

I've always believed that benzo damage incurs a host of epigenetic changes on our genes and that in order to get back to our previous state we must turn the bad genes off and the good genes back on.  The histamine problem is linked to the DAO gene (named for the enzyme that is produced in the small intestine and degrades histamine).  When our gut is off (dysbiosis or leaky gut) our DAO enzyme production is lowered and histamine becomes a problem.  I've started on a DAO supplement which is helping and I can widen my diet a bit to make sure I get the necessary nutrition in order to heal my gut.  It doesn't necessarily have to be MCAS after all.

GG, your headaches can definitely be linked to histamine.

Here's the link to the book, or you can search him on Youtube and get a feel for his perspective:

Amazon.com: Dirty Genes: A Breakthrough Program to Treat the Root Cause of Illness and Optimize Your Health (Audible Audio Edition): Ben Lynch, Kaleo Griffith, HarperAudio: Audible Books & Originals

Hope you find this interesting!  May we all be on the cusp of complete healing!

[[Ca...]]

Does it go away after we taper completely off and heal our gut?

[[De...]]

Yes @[Ca...]  The book outlines how to heal the dysfunction :-)

[Guest [...]]

For anyone here who wants to understand what is happening in the brain in relation to MCAS, please go to Gupta Program 7.0 (Beta) and sign up for the free trial.

No credit card details necessary. It’s truely a month free trial. 

Once signed up for the free trial, click on the menu, then click on (3) Medical Explanation.

Watch all 4 videos…

Module 1: The Evolutionary Background

Module 2: The Insula And The Amygdala

Module 3: How The Condition Starts & Develops

Module 4: The Vicious Cycle

You may potentially have underlying gut issues which may have to be resolved, however, understanding the above will give you enormous power toward resolving any issues with MCAS and many other issues you may be dealing with in recovery. 

 

[[De...]]

On 24/09/2023 at 11:18, [[W...] said:

For anyone here who wants to understand what is happening in the brain in relation to MCAS, please go to Gupta Program 7.0 (Beta) and sign up for the free trial.

No credit card details necessary. It’s truely a month free trial. 

Once signed up for the free trial, click on the menu, then click on (3) Medical Explanation.

Watch all 4 videos…

Module 1: The Evolutionary Background

Module 2: The Insula And The Amygdala

Module 3: How The Condition Starts & Develops

Module 4: The Vicious Cycle

You may potentially have underlying gut issues which may have to be resolved, however, understanding the above will give you enormous power toward resolving any issues with MCAS and many other issues you may be dealing with in recovery. 

Thank You @[Wi...] for this reference.  It was truly eye-opening and reminded me that I fell into this same viscous cycle when I injured my back years ago.  For me my personality makes everything worse and my brain is constantly sending danger signals to my body.  First the back pain, then fibromyalgia during withdrawal.  I indeed got myself out of it so I guess I can do it again, but interestingly this time around all the symptoms seem much worse and I literally feel like I'm dying sometimes.

The biggest tool to get out of this is practicing the art of being only an "observer" of our symptoms while deep breathing to send safety signals to the brain.  It's very hard and as I'm doing this I notice that my thoughts are getting even darker, almost as if my brain is sensing that it needs to try harder to alert me to danger.  It is a test of wills between the executive part of the brain and the limbic system.

So at 39 months off I find myself in the worst wave of all.  My GP says I have to dig deep.  Problem is my shovel is really old and useless  

 

[Guest [...]]

Hi @[De...]

I find it very interesting to have just read your post now. 

I understand your situation…

Although I’m not in the recovery phase yet, I experienced MCAS well before benzodiazepines, and, in fact, unbeknownst to the hospital psychiatrists, ended up on benzodiazepines because of the MCAS, rather than a psychiatric disorder the doctors far too easily assumed they were treating. It originally began with SIBO, Intestinal Permeability (leaky gut) which as a result stemmed into constant reactions to histamine and salicylate, after which, through those constant reactions, the brain was trained into a hyper aware, over-reactive state, constantly triggering the inflammatory response until I was stuck in that viscous cycle of it constantly inflaming the body and brain… which certainly doesn’t create the best conditions for healing. 

So, on that level, we are quite similar. 

I’m very glad that you found that medical explanation by Ashok Gupta so helpful. Gaining a true understanding of what is happening on a neurological and physical level is very empowering. 
 

It’s best to look at and then treat this with a wholistic approach… So, if you want to read up on MCAS as potentially relating to protracted withdrawal, then take a look at the buddie blog by @[as...] who has been doing a great deal of research on the subject, and who is actually about to add a long post on the Chewing The Fat board about this very subject very soon. 
 

Also, because you used the words “being only an observer”, I feel compelled to point you towards an audio recording by Ram Dass called ‘Becoming Nobody’. I think you may find it not only fascinating, but also very applicable and functional in helping you move through your current circumstances as the ‘observer’. 
 

WS 

 

[[De...]]

Thanks again @[Wi...]!  I will indeed check out those references.  Just wondering: Would you recommend the full premium version of the Gupta Program?  Have you used it yourself?  I healed before on my own - but I'm really struggling and feel I need the guidance now.

I wish you good healing in your own journey!

[Guest [...]]

You’re welcome, @[De...],

It’s a great program, you just have to commit to it. 

I’m not doing the main training just at the moment, but I use the 40minute ‘soften & flow’ meditation at least once a day, and 2 or 3 times other days. 

I know Beth O’Hara from MCAS 360 has many of her patients do the Gupta Program as first port of call, as many of her clients simply can’t onboard any mast cell stabilising supplements without having reactions, until they’ve somewhat calmed their systems or retrained their brains. 

If money isn’t too much of an issue, then, I think it’s definitely a worthwhile investment. You can get a $50 discount if you purchase it with the discount code from MCAS360. It’s only 50 dollars per year after the first year. 

If you can’t afford it, I would at least find and practice some guided meditations on YouTube or on download, but of course, you don’t get the brain retraining practices. 

Good healing to you, too! 

 

 

 

 

 

[[...]]

I think you're spot on about the MCAS / Histamine Intolerance theory. Adding a few resources here:

• An expert blog post discussing the relationship between benzos and MCAS
• A list of common medicines that are contraindicated with histamine intolerance (It's well-referenced, but translated, so please forgive the English)
• A Genetic Life Hacks article that, can also tell you your genetic susceptibility to MCAS and histamine issues, if you have an Ancestry or 23&Me DNA test

Hope it's helpful. 

[[Du...]]

Hi guys, 

@[...] @[Wi...] @[De...]

I'm dealing with a big wave of wd symptoms from benzodiazepines momentarily.

I had a history of histamine intollerance prior and still do. Did any of you ever try water fasting for this problem? Prior to benzo's it was the one thing that gave me the greatest relieve in histamine symptoms. 

I'm hesitant to try it now though, not knowing what it does to my BIND symptoms. I'm 3.5 months off, after a rapid taper. 

 

Edited December 2, 2023 by [Du...]