Author Topic: My Theory on Benzo withdrawal and connections to MCAS and POTS/DYSAUTOMNIA  (Read 2419 times)

[Buddie]

      I am putting this here to engage with people and discuss a possible connection to POTS/DYSAUTOMNIA and MCAS(Mast Cell Activation Syndrome) occurring during Benzo withdrawal. As my signature states I was taken off of alot of medications very quickly in a short amount of time.  A month after being taken off of these prescribed drugs, I was in a cardiology office having never been diagnosed with a heart condition before, being told that I had POTS/DYSAUTOMNIA.  I was given Metoprolol because my heart wasn't functioning properly, that was end of September 2020.  While the Metoprolol did help, I still wasn't feeling right.  I found this site and chalked it all up to withdrawal.  After multiple video visits with my PCP and her being very pushy about seeing a GI doctor over some chronic GI issues I was having, I finally gave in.  I had an Endoscopy, Colonoscopy, and a plethora of blood and urine tests.  Once all tests were finished , it was confirmed and I was diagnosed with MCAS(Mast Cell Activation Syndrome) something I had yet again never had before benzo withdrawal. 

     I then started noticing posts from other people about POTS/DYSAUTOMNIA and MCAS/HISTAMINE issues.  When my brain decides that it wants to work and retain information, I try to find some kind of connection.  It is too coincidental for these things to consistently be popping up for this VAST amount of people.  This is just MY theory on what's going on, while I do work in healthcare which is where my interest in connecting the dots comes into play, I AM NOT A DOCTOR NOR DO I CLAIM TO BE ONE.  This is just MY theory on what is happening.  My degree is in Neurodiagnostics not medical research.

     First thing is finding the connection between MCAS and POTS/DYSAUTOMNIA.  Here is what I found:
The connection between MCA and POTS....     https://pubmed.ncbi.nlm.nih.gov/15710782/  This study just simply explains that someone diagnosed with POTS should be considered for MCA as well.  Relevant but Not very informative.  Moving along to the next study  https://www.sciencedirect.com/science/article/abs/pii/S1566070217303387 ,  Okay, so scientists recognize that there is some kind of correlation but haven't found a direct pathway to the connection.  Again, relevant but not to informative, if anything only gets you wondering even more.  This obviously isn't the best way to ease the desideratum to my curiosity.

     My brain then goes on a crusade of how to figure this out.  What causes POTS/DYSAUTOMNIA......... "POTS may begin after an apparent or confirmed viral illness, but it can also appear following surgery and other health events."  https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots This general information about POTS/DYSAUTOMNIA from Johns Hopkins Implies that STRESS on the body leads to the development of POTS/DYSAUTOMNIA.  A light bulb goes off in my brain.

     Stress on the body and MCA(Mast Cell Activation). "Mental or emotional stress has been shown to cause mast cell degranulation in several different tissues. Several lines of experimental evidence indicate that stress, working through the sympathetic nervous system, or the hypothalamus-pituitary-adrenal axis, stimulates peripheral nerves to release neuropeptides that bind to receptors on the mast cells, causing them to degranulate"  https://pubmed.ncbi.nlm.nih.gov/16110169/  AAAGGGGHHHHH.......  STRESS!!!!!!    STRESS on the body is the correlation between POTS/DYSAUTOMINA and MCAS.

      Benzo withdrawal......we all know this too well, but for the heck of it..  "when benzodiazepines are withdrawn various neurotransmitter systems go into overdrive due to the lack of inhibitory GABAergic activity. Withdrawal symptoms then emerge as a result and withdrawal effects persist until the nervous system physically reverses the adaptions (physical dependence), which have occurred in the CNS due to the chronic use of benzodiazepines"  https://psychology.wikia.org/wiki/Benzodiazepine_withdrawal_syndrome  so....... STRESS!!!!!  there it goes popping up again!!! 

     So STRESS is the connecting factor between Benzo withdrawal, POTS/DYSAUTOMNIA, and MCAS.  But how does this correlate to the HISTAMINE intolerance which activates the degranulation in Mast Cells, causing the inflammation in bodily organs and dysfunction of hormones.  "Histamine occurs in cells of neuroepithelial and hematopoietic origin and serves distinct functions: gastric acid secretion, immunomodulation, smooth muscle contraction (bronchial), vasodilatation (vascular), as well as epi- and endothelial barrier control. These actions have important implications for gastrointestinal, immune, cardiovascular, and reproductive functions."  https://journals.physiology.org/doi/full/10.1152/physrev.00043.2007  .

     While there is not one specific article intertwining these physiological, psychological, and immunological bodily Reponses together in the correlation of these diseases, when all of the documentation is put together in one setting there is a direct connection, STRESS.  My theory is the the stress on the body incited by the discontinuation of benzodiazepines causes such a massive disruption in the homeostasis of the brain, which ultimately subjects the body to the new onset of these diseases.  This is just simply my brain trying to figure out my current situation and diagnoses that I have been given from this experience.  Now my brain is currently working on piecing together if I will actually heal from all of this or just simply go into remission.  They are two totally different things and have completely separate definitions/meanings.  Maybe one day I will have the brain capacity to do the research to try and put my theory on that together.  But for now, this is all it can retain.
     
     I encourage all respectful communication on my theory, even constructive criticism.  I would love to hear others thoughts on this as well.  It is possible I am going in the wrong direction with this and I am open to that discussion as well, as I donít claim to be the smartest tool in the shed either. 

     
« Last Edit: April 22, 2021, 12:52:22 pm by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

I think youíre on to something.

I never had these problems pre benzos. Now I have almost everything you have.

Iíd love to see others opinions on this.  :)

Commenting to stay on this thread.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

I think youíre on to something.

I never had these problems pre benzos. Now I have almost everything you have.

Iíd love to see others opinions on this.  :)

Commenting to stay on this thread.

Iím hoping Iím on to something!  I also found this... . https://pubmed.ncbi.nlm.nih.gov/8666988/   gaba regulates the release of histamine so if thereís a disruption in the gaba/glutamate system it propels the release of histamine. Iím thinking I might be on to something......
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

The further I travel on this journey, the more I also think my 'benzo illness' is something akin to dysautonomia, ME/CFS, fibromyalgia, a limbic system loop... etc. A perpetuating, cascading biological cycle in the nervous system/brain initiated by the extreme stress withdrawal caused for my nervous system.

I am nearing 4 years out and my body is in considerably worse shape than it was 4 months off Ativan. Hell, maybe even 4 weeks.
The withdrawal was absolutely the trigger that started it all. I can pinpoint it all to that CT. But I've just gone deeper and deeper with additional stressors as the years progress.
I feel like those 'setbacks' have been the reason I have not and cannot heal. The stress, the trauma, etc.

All of the things that have set me back and caused new or worsening symptoms haven't been things that have been proven to directly effect gaba/glutamate/kindling, etc. It's been things that stress my nervous system out. It's been major illnesses/surgeries, intense workouts, panic attacks, perpetuating PTSD, medical treatments like NAD+ that were hella hard on my body, etc. My symptoms flare in stressful situations, and are manageable when at ease.

Martin Pall's theory of NO/ONOO+, Annie Hopper's DNRS, People's stories of crashing/setbacks with ME/CFS and other apparent limbic loop/ANS dysfunction, cyclical/mysterious chronic illness... It all sounds just like the rollercoaster I've gone through since my CT withdrawal. Symptoms gradually started appearing after withdrawal... some faded... some got worse or appeared with every additional stressor. Many times people with these limbic system dysfunction illnesses experience this exact same trajectory with very similar symptoms. Some also go into remission after months or years of dealing with their conditions. Some actually heal and don't deal with the conditions anymore at all.

I think 'benzo withdrawal' might ultimately be different things for different people. The withdrawal itself is hard as hell. There are direct, functional changes to GABA/glutamate receptors that take time to heal... I think that's what most people deal with. It's tough, but it re-balances itself out after several months or a year or two. But for those of us that went through withdrawal and just have gotten progressively worse over the years, there has to be something else going on, imo.

People often say on here, if it started with withdrawal, it will go away once the withdrawal has run its course. But I don't think that's necessarily true. It's absolutely possible that withdrawal can AWAKEN other conditions that one may be predisposed to. Stress is often the culprit for such awakenings and as you said, withdrawal is major STRESS for the body/nervous system. Withdrawal awoken a condition called MALS for me. Never had it before benzos, after benzos it started. Got diagnosed by the top MALS doctor in the country, had surgery with him, and it eliminated the condition. It 100% started with benzos. I've also been diagnosed with dysautonomia since benzos, btw.

So.... yeah, I think you're on to something. Maybe this isn't the answer for everyone, but for some of us, I think it could definitely help explain our condition..... Either way, whatever is happening to our nervous systems...... STRESS is BAD. Mindfulness, meditation, eliminating as many life stressors as possible, nervous system retraining like DNRS/ANS Rewire/Gupta Program, etc., following Martin Pall's suggestions for taming NO ONOO, reducing dietary/environmental inflammation..... I think it all has potential in helping expedite our goals for nervous system homeostasis.
« Last Edit: April 25, 2021, 01:39:26 am by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

      I am putting this here to engage with people and discuss a possible connection to POTS/DYSAUTOMNIA and MCAS(Mast Cell Activation Syndrome) occurring during Benzo withdrawal. As my signature states I was taken off of alot of medications very quickly in a short amount of time.  A month after being taken off of these prescribed drugs, I was in a cardiology office having never been diagnosed with a heart condition before, being told that I had POTS/DYSAUTOMNIA.  I was given Metoprolol because my heart wasn't functioning properly, that was end of September 2020.  While the Metoprolol did help, I still wasn't feeling right.  I found this site and chalked it all up to withdrawal.  After multiple video visits with my PCP and her being very pushy about seeing a GI doctor over some chronic GI issues I was having, I finally gave in.  I had an Endoscopy, Colonoscopy, and a plethora of blood and urine tests.  Once all tests were finished , it was confirmed and I was diagnosed with MCAS(Mast Cell Activation Syndrome) something I had yet again never had before benzo withdrawal. 

     I then started noticing posts from other people about POTS/DYSAUTOMNIA and MCAS/HISTAMINE issues.  When my brain decides that it wants to work and retain information, I try to find some kind of connection.  It is too coincidental for these things to consistently be popping up for this VAST amount of people.  This is just MY theory on what's going on, while I do work in healthcare which is where my interest in connecting the dots comes into play, I AM NOT A DOCTOR NOR DO I CLAIM TO BE ONE.  This is just MY theory on what is happening.  My degree is in Neurodiagnostics not medical research.

     First thing is finding the connection between MCAS and POTS/DYSAUTOMNIA.  Here is what I found:
The connection between MCA and POTS....     https://pubmed.ncbi.nlm.nih.gov/15710782/  This study just simply explains that someone diagnosed with POTS should be considered for MCA as well.  Relevant but Not very informative.  Moving along to the next study  https://www.sciencedirect.com/science/article/abs/pii/S1566070217303387 ,  Okay, so scientists recognize that there is some kind of correlation but haven't found a direct pathway to the connection.  Again, relevant but not to informative, if anything only gets you wondering even more.  This obviously isn't the best way to ease the desideratum to my curiosity.

     My brain then goes on a crusade of how to figure this out.  What causes POTS/DYSAUTOMNIA......... "POTS may begin after an apparent or confirmed viral illness, but it can also appear following surgery and other health events."  https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots This general information about POTS/DYSAUTOMNIA from Johns Hopkins Implies that STRESS on the body leads to the development of POTS/DYSAUTOMNIA.  A light bulb goes off in my brain.

     Stress on the body and MCA(Mast Cell Activation). "Mental or emotional stress has been shown to cause mast cell degranulation in several different tissues. Several lines of experimental evidence indicate that stress, working through the sympathetic nervous system, or the hypothalamus-pituitary-adrenal axis, stimulates peripheral nerves to release neuropeptides that bind to receptors on the mast cells, causing them to degranulate"  https://pubmed.ncbi.nlm.nih.gov/16110169/  AAAGGGGHHHHH.......  STRESS!!!!!!    STRESS on the body is the correlation between POTS/DYSAUTOMINA and MCAS.

      Benzo withdrawal......we all know this too well, but for the heck of it..  "when benzodiazepines are withdrawn various neurotransmitter systems go into overdrive due to the lack of inhibitory GABAergic activity. Withdrawal symptoms then emerge as a result and withdrawal effects persist until the nervous system physically reverses the adaptions (physical dependence), which have occurred in the CNS due to the chronic use of benzodiazepines"  https://psychology.wikia.org/wiki/Benzodiazepine_withdrawal_syndrome  so....... STRESS!!!!!  there it goes popping up again!!! 

     So STRESS is the connecting factor between Benzo withdrawal, POTS/DYSAUTOMNIA, and MCAS.  But how does this correlate to the HISTAMINE intolerance which activates the degranulation in Mast Cells, causing the inflammation in bodily organs and dysfunction of hormones.  "Histamine occurs in cells of neuroepithelial and hematopoietic origin and serves distinct functions: gastric acid secretion, immunomodulation, smooth muscle contraction (bronchial), vasodilatation (vascular), as well as epi- and endothelial barrier control. These actions have important implications for gastrointestinal, immune, cardiovascular, and reproductive functions."  https://journals.physiology.org/doi/full/10.1152/physrev.00043.2007  .

     While there is not one specific article intertwining these physiological, psychological, and immunological bodily Reponses together in the correlation of these diseases, when all of the documentation is put together in one setting there is a direct connection, STRESS.  My theory is the the stress on the body incited by the discontinuation of benzodiazepines causes such a massive disruption in the homeostasis of the brain, which ultimately subjects the body to the new onset of these diseases.  This is just simply my brain trying to figure out my current situation and diagnoses that I have been given from this experience.  Now my brain is currently working on piecing together if I will actually heal from all of this or just simply go into remission.  They are two totally different things and have completely separate definitions/meanings.  Maybe one day I will have the brain capacity to do the research to try and put my theory on that together.  But for now, this is all it can retain.
     
     I encourage all respectful communication on my theory, even constructive criticism.  I would love to hear others thoughts on this as well.  It is possible I am going in the wrong direction with this and I am open to that discussion as well, as I donít claim to be the smartest tool in the shed either. 

     

POTS is not a heart condition it's an ANS dysfunction. POTS is diagnosed in absence of heart disease
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

      I am putting this here to engage with people and discuss a possible connection to POTS/DYSAUTOMNIA and MCAS(Mast Cell Activation Syndrome) occurring during Benzo withdrawal. As my signature states I was taken off of alot of medications very quickly in a short amount of time.  A month after being taken off of these prescribed drugs, I was in a cardiology office having never been diagnosed with a heart condition before, being told that I had POTS/DYSAUTOMNIA.  I was given Metoprolol because my heart wasn't functioning properly, that was end of September 2020.  While the Metoprolol did help, I still wasn't feeling right.  I found this site and chalked it all up to withdrawal.  After multiple video visits with my PCP and her being very pushy about seeing a GI doctor over some chronic GI issues I was having, I finally gave in.  I had an Endoscopy, Colonoscopy, and a plethora of blood and urine tests.  Once all tests were finished , it was confirmed and I was diagnosed with MCAS(Mast Cell Activation Syndrome) something I had yet again never had before benzo withdrawal. 

     I then started noticing posts from other people about POTS/DYSAUTOMNIA and MCAS/HISTAMINE issues.  When my brain decides that it wants to work and retain information, I try to find some kind of connection.  It is too coincidental for these things to consistently be popping up for this VAST amount of people.  This is just MY theory on what's going on, while I do work in healthcare which is where my interest in connecting the dots comes into play, I AM NOT A DOCTOR NOR DO I CLAIM TO BE ONE.  This is just MY theory on what is happening.  My degree is in Neurodiagnostics not medical research.

     First thing is finding the connection between MCAS and POTS/DYSAUTOMNIA.  Here is what I found:
The connection between MCA and POTS....     https://pubmed.ncbi.nlm.nih.gov/15710782/  This study just simply explains that someone diagnosed with POTS should be considered for MCA as well.  Relevant but Not very informative.  Moving along to the next study  https://www.sciencedirect.com/science/article/abs/pii/S1566070217303387 ,  Okay, so scientists recognize that there is some kind of correlation but haven't found a direct pathway to the connection.  Again, relevant but not to informative, if anything only gets you wondering even more.  This obviously isn't the best way to ease the desideratum to my curiosity.

     My brain then goes on a crusade of how to figure this out.  What causes POTS/DYSAUTOMNIA......... "POTS may begin after an apparent or confirmed viral illness, but it can also appear following surgery and other health events."  https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots This general information about POTS/DYSAUTOMNIA from Johns Hopkins Implies that STRESS on the body leads to the development of POTS/DYSAUTOMNIA.  A light bulb goes off in my brain.

     Stress on the body and MCA(Mast Cell Activation). "Mental or emotional stress has been shown to cause mast cell degranulation in several different tissues. Several lines of experimental evidence indicate that stress, working through the sympathetic nervous system, or the hypothalamus-pituitary-adrenal axis, stimulates peripheral nerves to release neuropeptides that bind to receptors on the mast cells, causing them to degranulate"  https://pubmed.ncbi.nlm.nih.gov/16110169/  AAAGGGGHHHHH.......  STRESS!!!!!!    STRESS on the body is the correlation between POTS/DYSAUTOMINA and MCAS.

      Benzo withdrawal......we all know this too well, but for the heck of it..  "when benzodiazepines are withdrawn various neurotransmitter systems go into overdrive due to the lack of inhibitory GABAergic activity. Withdrawal symptoms then emerge as a result and withdrawal effects persist until the nervous system physically reverses the adaptions (physical dependence), which have occurred in the CNS due to the chronic use of benzodiazepines"  https://psychology.wikia.org/wiki/Benzodiazepine_withdrawal_syndrome  so....... STRESS!!!!!  there it goes popping up again!!! 

     So STRESS is the connecting factor between Benzo withdrawal, POTS/DYSAUTOMNIA, and MCAS.  But how does this correlate to the HISTAMINE intolerance which activates the degranulation in Mast Cells, causing the inflammation in bodily organs and dysfunction of hormones.  "Histamine occurs in cells of neuroepithelial and hematopoietic origin and serves distinct functions: gastric acid secretion, immunomodulation, smooth muscle contraction (bronchial), vasodilatation (vascular), as well as epi- and endothelial barrier control. These actions have important implications for gastrointestinal, immune, cardiovascular, and reproductive functions."  https://journals.physiology.org/doi/full/10.1152/physrev.00043.2007  .

     While there is not one specific article intertwining these physiological, psychological, and immunological bodily Reponses together in the correlation of these diseases, when all of the documentation is put together in one setting there is a direct connection, STRESS.  My theory is the the stress on the body incited by the discontinuation of benzodiazepines causes such a massive disruption in the homeostasis of the brain, which ultimately subjects the body to the new onset of these diseases.  This is just simply my brain trying to figure out my current situation and diagnoses that I have been given from this experience.  Now my brain is currently working on piecing together if I will actually heal from all of this or just simply go into remission.  They are two totally different things and have completely separate definitions/meanings.  Maybe one day I will have the brain capacity to do the research to try and put my theory on that together.  But for now, this is all it can retain.
     
     I encourage all respectful communication on my theory, even constructive criticism.  I would love to hear others thoughts on this as well.  It is possible I am going in the wrong direction with this and I am open to that discussion as well, as I donít claim to be the smartest tool in the shed either. 

     

POTS is not a heart condition it's an ANS dysfunction. POTS is diagnosed in absence of heart disease
Apologies, let me rephrase......   the stress on my heart from POTS caused new onset heart failure.  I hope this clears up any confusion for you.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Great post!  I developed adrenal issues, pots, histamine e issues I believe from food poisoning, stress, digestive problems, etc.  Because of all this, I was given benzos which only made things much worse!  I have recovered a lot since ce tapering the benzos but, still deal with a hyper-reactive system and diagnoses with MCAS.  DNRS did help and still working on it.  Trying to keep stress down too the best I can.  Thanks for the good information!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

My last doc suspected POTS last time I went to see her but didn't diagnose me with it.  I do have diagnosed Tachycardia.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Have any of you been evaluated for CCI or hEDS? POTS, Fibro, MCAS all common with hEDS. Some speculation that collagen may be affected too. Collagen is weak with hEDS.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Have any of you been evaluated for CCI or hEDS? POTS, Fibro, MCAS all common with hEDS. Some speculation that collagen may be affected too. Collagen is weak with hEDS.

I am in the process of this.
CCI can cause MCAS etc.
Surgery to correct it helped Jen Breaís & Jeffís MCAS : https://www.mechanicalbasis.org/
My prob is even if could raise £100k to go to Spain for surgery the reaction I have to all foods, meds etc is sudden extreme loss of muscle tone so no way could have surgery as all meds etc would cause stitches to be pulled out.
Withdrawal has completely destroyed my collagen, muscles and vertebrae.
Not going to miraculously recover from that.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.