Perhaps above all else, I try to maintain a sense of Spacious Awareness going from moment to moment to moment. Living alone over time, this has become rather easy. But, introduce other people, and it usually quickly dissipates, and takes a back seat to, the Other. For me, I find that by lighting a candle while I am at home alone it helps me to re-frame my experience away from the noises of the world and return to the joys of being at home. I also usually have a vase of fresh cut flowers next to my candle just to remind myself of the sheer beauty and aliveness of the world around me.
Your suggestions are all helpful, where things get somewhat "interesting" is with the "Brain retraining" these approaches are often outlawed in the CFS/ME, MCAS communities. Due to massively variable responses to the "training" and people rightly feeling that their thinking is not what caused their hypersensitivity to start initially. (i.e. long covid or a virus as the initial trigger) my opinion after trying these programs over the last decade with zero results is that they are Placebo .... hence the massively variable responses to exactly the same instructions etc ?
Thank you, Steve....really good point you bring up. And thank you for sharing your experience with these programs. It does make me wonder why we seem to see much better results (in many - not all) in the complex chronic illness community, which sounds very counter to what you describe in the CFS/ME, MCAS communities. I very much agree that those who have limbic symptoms, do because of a physiologic insult (viral, mold, lyme, EMF, etc) which impact both the immune, and limbic system. My biggest concern with limbic system retraining has been hearing from some that they didn't feel encouraged to continue treatment for the underlying physiologic root causes. When I do bring it up, it is as part of treatment, as opposed to the only treatment. I also feel strongly that people need to pay attention to what feels like a fit for them and wouldn't encourage someone to do a program or anything else, that does make sense or feel right to them. Thanks again, for taking a moment to comment.
Hello Courtney, I am particularly interested in the hypothesis that (some) people who develop MCAS etc. often have childhood trauma (CPTSD) and as a result develop a hypervigilant state to protect themselves, which later in life and under the right/wrong life circumstances "switches on" an immune system hypervigilance. I see many of the well known MCAS Doctors making this claim and suggesting Limbic/neural training as an essential component to healing. In my own case I do not have any significant childhood trauma (although few escape without scars:) and never had a problem with sensitivities etc until the perfect storm of - high stress + unhappy marriage + alcohol + benzodiazepine + mold = insanity that brain retraining cannot touch .... our genetics would appear to be the main factor for many .... I have met many people with significant childhood and adult trauma who had little to no sensitivities at all ....so which genetic markers are responsible ? MTHFR ? COMT ? HLA ? (per Shomaker etc.) or our Constitution + epigenetics . I love that you offer modalities to try to mitigate or reduce the craziness of these syndromes.
I wish more people were asking this very question....I'm of the belief that there is a very strong genetic component and that the likely gene is 21-hydroxylase (involved in stress hormone pathways) which not only would significantly raise ones likelihood of having mast cell activation, but also result in brain impacts during fetal development that impact the amygdala causing a "wiring for danger." High androgen exposure appear to have this impact. Trauma isn't necessary, but those of us who fit this "CAPs" profile , can certainly look traumatized. As far as the genes you mentioned, I do believe a slow COMT and MTHFR could contribute in a number of ways, but would still feel 21-hydroxylase is where it's at. You might find Dr. Sharon Meglathery's RCCX theory (which is focused on 21 hydroxylase) really interesting. Because there could be a wide range of variants causing this gene to be impacted, we don't have snps for this , the way we do for MTHFR and COMT...yet. If you scroll down to the bottom of the page, you will see her description of the CAPs profile. I have a recent newsletter (cliff notes version) on this as well. Below is a link to RCCX theory - CAPs profile. If you do dig into it, I'd love to hear your reaction.
That is quite a read ! and a lot of information to consider ... what immediately resonated for me are the links to the "sensitive HSP" people, I can certainly relate to constant pattern recognition very high levels of sensitivity, empathy and crazy intuition, without any timidity or deer in the head lights type behavior. I have lots more reading and research to do in regards to 21-hydroxylase , many thanks for the link ...of note as I was reading I was reminded of a book I bought in 2010 about the "Anomalously Sensitive person" by David Ritchey which looks at people who have less common traits who tend to develop chronic illness . Thanks again Courtney.
You are very welcome. So nice for me to have this exchange. Likely CAPS, HSP, "Anomalously Sensitive Person" (which I hadn't heard of) and even those with pyrrole disorder are the same or overlapping populations. If your not familiar with pyrrole disorder, I'm glad to share something on it. I think it's important because the treatment is relatively straight forward and very effective for most.
Perhaps above all else, I try to maintain a sense of Spacious Awareness going from moment to moment to moment. Living alone over time, this has become rather easy. But, introduce other people, and it usually quickly dissipates, and takes a back seat to, the Other. For me, I find that by lighting a candle while I am at home alone it helps me to re-frame my experience away from the noises of the world and return to the joys of being at home. I also usually have a vase of fresh cut flowers next to my candle just to remind myself of the sheer beauty and aliveness of the world around me.
Thank you, Robert. for sharing these. They really are inspiring ideas and good reminders of the power of ritual.
Your suggestions are all helpful, where things get somewhat "interesting" is with the "Brain retraining" these approaches are often outlawed in the CFS/ME, MCAS communities. Due to massively variable responses to the "training" and people rightly feeling that their thinking is not what caused their hypersensitivity to start initially. (i.e. long covid or a virus as the initial trigger) my opinion after trying these programs over the last decade with zero results is that they are Placebo .... hence the massively variable responses to exactly the same instructions etc ?
Thank you, Steve....really good point you bring up. And thank you for sharing your experience with these programs. It does make me wonder why we seem to see much better results (in many - not all) in the complex chronic illness community, which sounds very counter to what you describe in the CFS/ME, MCAS communities. I very much agree that those who have limbic symptoms, do because of a physiologic insult (viral, mold, lyme, EMF, etc) which impact both the immune, and limbic system. My biggest concern with limbic system retraining has been hearing from some that they didn't feel encouraged to continue treatment for the underlying physiologic root causes. When I do bring it up, it is as part of treatment, as opposed to the only treatment. I also feel strongly that people need to pay attention to what feels like a fit for them and wouldn't encourage someone to do a program or anything else, that does make sense or feel right to them. Thanks again, for taking a moment to comment.
Hello Courtney, I am particularly interested in the hypothesis that (some) people who develop MCAS etc. often have childhood trauma (CPTSD) and as a result develop a hypervigilant state to protect themselves, which later in life and under the right/wrong life circumstances "switches on" an immune system hypervigilance. I see many of the well known MCAS Doctors making this claim and suggesting Limbic/neural training as an essential component to healing. In my own case I do not have any significant childhood trauma (although few escape without scars:) and never had a problem with sensitivities etc until the perfect storm of - high stress + unhappy marriage + alcohol + benzodiazepine + mold = insanity that brain retraining cannot touch .... our genetics would appear to be the main factor for many .... I have met many people with significant childhood and adult trauma who had little to no sensitivities at all ....so which genetic markers are responsible ? MTHFR ? COMT ? HLA ? (per Shomaker etc.) or our Constitution + epigenetics . I love that you offer modalities to try to mitigate or reduce the craziness of these syndromes.
Regards
Steve
I wish more people were asking this very question....I'm of the belief that there is a very strong genetic component and that the likely gene is 21-hydroxylase (involved in stress hormone pathways) which not only would significantly raise ones likelihood of having mast cell activation, but also result in brain impacts during fetal development that impact the amygdala causing a "wiring for danger." High androgen exposure appear to have this impact. Trauma isn't necessary, but those of us who fit this "CAPs" profile , can certainly look traumatized. As far as the genes you mentioned, I do believe a slow COMT and MTHFR could contribute in a number of ways, but would still feel 21-hydroxylase is where it's at. You might find Dr. Sharon Meglathery's RCCX theory (which is focused on 21 hydroxylase) really interesting. Because there could be a wide range of variants causing this gene to be impacted, we don't have snps for this , the way we do for MTHFR and COMT...yet. If you scroll down to the bottom of the page, you will see her description of the CAPs profile. I have a recent newsletter (cliff notes version) on this as well. Below is a link to RCCX theory - CAPs profile. If you do dig into it, I'd love to hear your reaction.
https://www.rccxandillness.com/cyp21a2-mutations-may-be-the-diathesis-in-the-stress-diathesis-model-for-chronic-medical-and-mental-illness-and-may-cause-a-psychiatric-spectrum-caps.html
That is quite a read ! and a lot of information to consider ... what immediately resonated for me are the links to the "sensitive HSP" people, I can certainly relate to constant pattern recognition very high levels of sensitivity, empathy and crazy intuition, without any timidity or deer in the head lights type behavior. I have lots more reading and research to do in regards to 21-hydroxylase , many thanks for the link ...of note as I was reading I was reminded of a book I bought in 2010 about the "Anomalously Sensitive person" by David Ritchey which looks at people who have less common traits who tend to develop chronic illness . Thanks again Courtney.
https://a.co/d/bAiWo2z
You are very welcome. So nice for me to have this exchange. Likely CAPS, HSP, "Anomalously Sensitive Person" (which I hadn't heard of) and even those with pyrrole disorder are the same or overlapping populations. If your not familiar with pyrrole disorder, I'm glad to share something on it. I think it's important because the treatment is relatively straight forward and very effective for most.