do long protracteds have MCAS?

[[...]]

@[Du...] - I have not personally tried water fasting, but I know other people who have done this when dealing with MCAS/histamine issues and it has helped similarly. 

I want to do a type of "cleanse" that is similar to a water fast, but I'm waiting until I'm done my taper. Until then, I'm finding that BPC-157 helps me a lot with the MCAS symptoms. I posted about that here.  

It's pricey. If you're in the US, the company, InfiniWell, is running a Black Friday sale. 30% off. Coupon code is BF30. 

[Guest [...]]

Hi @[Du...]

If I’m having issues with the onset of, or increased symptoms, after eating, I stick to easily digestible low histamine, glutamate free foods. It also helps to eat foods that are either soft or made into soups or smoothies, as histamine also builds up through the digestive process. 

Were your issues prior to benzo’s all related to histamine intolerance, or did you also have Mast Cell Activation Syndrome? Many people with either of these also unknowingly have the other. You can check out all the information on dealing with histamine and MCAS at Mast Cell360. Mast cells will often be very unstable in recovery. 

 

 

[[Du...]]

Thanks @[...] @[Wi...]

I have a doctor who suspects MCAS, it's just not diagnosed, since it's not properly possible over here in the Netherlands. 

I definitely have lots of symptoms that would indicate MCAS, already prior to use of benzodiazepines. 

[[Ma...]]

Does anyone know if this histamine intolerance improves? I started noticing it with my estrogen rising in my cycle and month after month of my taper it’s getting worse and worse.. I cut out histamine foods and didn’t notice a difference so I started eating them again and now I’m in like a histamine storm. This can’t be permanent can it? 

[[Ca...]]

I hope it isn’t permanent. I was diagnosed with MCAS by allergy and immunology but still in denial. I’ve been on a low histamine diet for 4 months now. I’ve noticed it does help a lot but it’s still not great. She wants to add Cromolyn and double up in my Zyrtec and add Pepcid but I had an issue with the Pepcid as it interacted with the Valium. I’m hoping this does go away. Dr. Jennifer Leigh who does coaching says it does with time post taper. I’m really scared to try any new medications I’m really close to coming off. I’m at .5mg of Valium just holding for a few weeks before jumping. 

[[or...]]

sorry didn't read title of post well enough, I'm not protracted.

Edited December 29, 2023 by [or...]
not protracted

[[or...]]

rather not share again, not protracted.

Edited December 29, 2023 by [or...]
not protracted

[[ns...]]

On 05/09/2023 at 02:00, [[b...] said:

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

Now this is what I've Been crying about! I've been researching and reading so many of these cases. Yes you need documentation here, I have a great one for u I'll get the link. I posted about titanium clips and histamine intolerance because I know I have them in my belly from a gallbladder surgery and hysterectomy yrs ago. I've been sick for many years. I see you've been researching a lot, but Colin is right, you need to include the links to your research for it to be of value for any of us interested can use it. An Immunologist, interesting, I was going to see a gastroenterologist for this. The list of foods I cannot eat is growing. Today I had low blood sugar, had to drink soda which I cannot have sugar. I can't take antihistamine because I have hyponatremia, a sodium electrolyte imbalance. Antihistamines dry you out, I need hydration. So here we are, starving, trying to understand what happened an why? Please do add links for this important post, So I can take it to my doctor please!

Thanks so much 

Ns

Edited January 21 by [ns...]
Addition

[[...]]

On 05/09/2023 at 12:00, [[b...] said:

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

I learned about the low histamine diet in Facebook groups of long-covid. I was on antidepressants for many years and occasionally benzos but I am here on this forum because our symptoms our very much similar. As you said, we share symptoms with long covid patients, MCAS sufferers, ME/CFS. I'm not sure i believe the receptors theory either, or it might be part of the story only. I have been on an low histamine diet for a while and seen some progress, I'm also doing autoimmune paleo diet to reduce inflammation and that has helped as well. I think we are all hooked on the receptor theory that we aren't looking anywhere else and simply believing that time alone will heal us. Maybe if we treat underlying problems we will heal much faster than taking years. Just thinking out loud, let me know where your research leads you. Much love

[[Th...]]

So let me get this straight. You are theorizing that instead of an issue with our receptors that seemingly heals over time and goes away, we are actually dealing with what also seems to me to be a lifelong syndrome that has activated in us and can only be helped by major changes in lifestyle and habits. Okay, well I have a couple questions. What does this mean for the people who say they no longer deal with withdrawal symptoms? Were they lying? Or maybe they were lucky enough to not have the syndrome activate in them? Or possibly they unknowingly are applying all these major lifestyle changes consistently without fail, and without laying that out for others. Unlikely in my opinion. I agree that our withdrawal causes histamine issues, I myself have some incredibly unfortunate symptoms because of such. I disagree that it is necessarily actual MCAS and I highly disagree with it being a lifelong battle in which we must combat every day or else it is with us for our life. Ideas like that by the way don’t exactly help people with the hopelessness of our withdrawal.

Finally, I don’t appreciate that while we are here theorizing there are those who are wanting to peddle, what in my opinion, seems to be snake oil. This Gupta program or whatever it is called. It seems as if they are just preying on people who are going through extreme mental and physical anguish in order to get a few more premium memberships. Saddening to see on a forum made for support of such people.

I would appreciate a response, I believe that any good theory should be tested and combated in order to see if it truly holds water. Would love a rebuttal to my questions.

Edited February 27 by [Th...]
Grammar

[[Co...]]

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

Glad to hear contrary views, especially to unproven theories. But FYI, the 'Chewing the Fat' forum is intended to allow members to theorize and explore (sometimes, baseless) ideas. (Better here than on our core support forums.).

Having said that, I will review the thread to see if it breaches any of our guidelines around the promotion of products.

[[Co...]]

I've taken a quick look into Ashok Gupta and his background. First of all, he is an economist by training, not a doctor. He is based in the UK and operates some kind of 'holistic' clinic. As far as I can determine, he holds no qualifications in medicine (or in a related field) and has published no peer reviewed papers.

The pinned notice for this forum:

On 01/06/2010 at 22:01, [[C...] said:

Hi,

Chewing the Fat is intended for all those benzodiazepine (and other drug) discussions that are not about "support". There is a distinct lack of good research regarding benzodiazepine use and withdrawal, but at the same time there is much disinformation too. It is fine to use this board to discuss your pet theories to see if they float, but you should expect strong rebuttals if your ideas do not hold water. References and citations are very much encouraged when posting ideas and rebuttals.

You might also discuss what happened to you and how this might relate to existing research. Again, you might discuss your own ideas too.

Where possible, scientifically supported information should be referenced, but as "Chewing the Fat" implies, floating ideas, sound or fanciful, are also welcome.

Although we allow for a lot of latitude in Chewing the Fat, no citations have been posted to this thread in support of claims for efficacy. On the face of it, this thread is better suited for the Alternative Treatments group, which is intended for content and claims about treatments with no scientific basis. I will discuss with the team if this thread should be relocated.

I watched the first couple of minutes of this video, where in the introduction it claims efficacy for a myriad of unrelated conditions (Chronic Fatigue Syndrome; ME; Long COVID (but of course it does); Lyme Disease (that old chestnut*); Fibromyalgia; 'and similar conditions' (really?)). Such scattergun claims are the hallmark of quackery.

* To be clear, Lyme Disease is real. But it is one of those conditions which is repeatedly targetted by 'holistic practitioners' peddling their baseless wares.

And before anyone complains about my response, I direct you to the pinned notice I quoted above - I have opinions too.

[[or...]]

Edited February 27 by [or...]

[[or...]]

I can't bring myself to out and out poopoo anyone's theories so I just like to share my own experience and beliefs on how I'm doing with my taper/wd sxs.

One thing that's pretty clear is there are plenty of people (including doctors of one thing or another) getting on the band-wagon with dollar signs in their eyes.  Some of them well-meaning maybe, but still, common sense comes in very handy.  My common sense tells me to take what I "think" I might be able to use, and leave the rest of any information.

I also have what I believe to be histamine issues, and adjusted my nutrition in a way I believed would help, and it has.  I'm not over the issues, yet but I have hope because of the improvements. 

I believe my quality of life depends on the lack of Clonazepam. My choices for proper nutrition, and exercise are evidently beneficial.  I guess the proof "is" in the pudding.

 

[[Pa...]]

[[Ga...]]

I am one of the unlucky protracted at 4 years off next month, and have often wondered as to whether MCAS plays any part in those in protracted withdrawal.  Believe me, I have pondered and researched to the nth degree the question of MCAS and its possible involvement with benzos; I followed up by making appointments several months apart with two allergists/immunologists.The first doctor basically said he did not test for MCAS as he is not a believer in it!  He did test me for allergies and found that I was only allergic to oak trees and something I can’t remember.  He did find that I have food “sensitivities”,  not allergies.  Weirdly I was found to be sensitive to such things as….black pepper, mustard, pork, cantaloupe, and several other weird “never before sensitive food items.”  As a “second” opinion I found another doctor who basically said that, in her opinion, MCAS now seems to be the “disease du  jour.”. She is a highly trained and well respected doctor in the Washington DC area, and has great ratings, so I do respect her opinions.  She is receptive to untangling my histamine issues, but not to devoting any of her time to MCAS.  However, she shared that as the topic of MCAS has been floating around now for a few years, she has remained open to the possibility of it; she had a meeting with some of her colleagues and they all said they had never had a case that proved to be MCAS.   So, at this point I am going to focus on solving my food sensitivities which appear to be contributing to my lingering gut issues.

This is my experience and my experience solely.  For some buddies MCAS diagnosis and treatment may be a very real thing, and I respect that.  I just hope and pray that each of us finds our individual approach to recovery a successful one!!!

GG

 

 

Edited February 27 by [Ga...]
Grammar and additional information

[[bw...]]

Thankyou for your input.

Before my setback I actually ate a kebab from a kebab shop. I was 5years 3mos off then. I also occasionally dwelved into eating chinese with MSG. With no severe issues whatsoever.

 

However since my setback 12 months ago I definatley could not eat such a thing. I would simply have to call the ambulance for help. My heartrate and breathing would go haywire.

 

Noone can explain to me why this happens. How can you become bassically allergic to food all over again from taking a drug ie antibiotic that induces a setback?

 

Like I mentioned . mcas patients simply LAY IN WAIT. For their next trigger.

Their next trigger makes the situation worse and worse.

 

Very interesting.

Thanks for your comment!

[[bw...]]

Does she have a theory why people become so allergic to everything... foods. Meds and have year long or more severe setbacks when they were healed? It makes no medical sense of why or how this happens. Its very bizzare.