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Heresy

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Reply with quote  #1 
I've been doing a lot of research on CRH (or CRF) and I found some information I'm surprised not to have come across yet. For women, (sorry guys):

- "A rapid increase in circulating levels of CRH occurs at the onset of parturition, suggesting that, in addition to its metabolic functions, CRH may act as a trigger for parturition." - (Wikipedia, Corticotropin-releasing hormone) 

(Parturition is essentially the event of childbirth.) One obvious trigger for women is their menstrual cycle. I noticed during the episodes caused by my BMs, my "womb" still felt as if I were menstruating even though I had stopped my cycle. I'll come back to this in a bit, but MANY women report their cycle triggering their attacks. This hormone is kind of insane.

- "The CRH-1 receptor antagonist pexacerfont is currently under investigation for the treatment of generalized anxiety disorder in women.[3]"

ORLY???

And right after - "Also, abnormally high levels of CRH have been found in the cerebrospinal fluid of suicide victims."

This. 

We all know the anxiety is a terrible part of this syndrome. I have to admit I've had episodes so bad I was literally begging my boyfriend to kill me out of mercy. No, I wasn't being dramatic. Since so many of us have also had to deal with anxiety disorders, I'm probably not the only one. As annoying as it is to know that our thoughts aren't our doing per se, we're also at the mercy of our brain chemicals and hormones, etc. But please be aware that thoughts of self-harm are NOT because you're thinking it really is all too much to bear - it's just too much CRH being spit out. Please don't give in to it.

So we all know how painful episodes can be. It's my theory that although Dr. Fleisher said "The intolerable pain and distress of panic‐induced cyclic vomiting episodes are no less excruciating than that suffered by many patients with cancer or  myocardial infarction." - (An Essay on the Management of Adult Cyclic Vomiting Syndrome,
Including the Use of Opiates: questions posed and lessons learned from clinical management of 216 patients), makes me think the pain might be more similar to childbirth. (Any mothers out there that can input, please do! Do you think the attack pain is similar to childbirth? Minus the endorphin rush at the end of course...)

Damn, an attack is coming on - other things I wanted to point to but can't find the links at the moment. On it being more frequent at night (CRH is produced more between the hours of 1am-6am) and the fact that CRH is a hormone that is associated with stress and CVS is seen more often in women than in men and that the menstrual cycle is closely linked (I personally started my attacks just about a month after returning to my cycle after being on hormonal birth control and got my period back for the first time in 5 years... eesh). So this hormone is a Big Thing. I would like to see more studies done about CVS and CRH.

Thanks for reading and I'm with you all in spirit. Be well. <3

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"...I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug....I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick." - Excerpt from the Hippocratic Oath
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Heresy

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Reply with quote  #2 
)

More info on CRF (CRH - Corticotropin-releasing hormone):

CRF Secretion Reduction - Physical or psychological stress releases corticotropin releasing factor (CRF) from the hypothalamus. CRF has two main functions in the body, activation of the Locus Ceruleus and stimulation of the Vagus nerve. A third classic function role is stimulation of the anterior pituitary to secrete ACTH thereby activating the hypophyseal-pituitary-adrenal axis (HPA) and the stress response. 
Also - on why hot water works: (

The Hypothalamus has often been called the “Director” of the human symphony. The central hub, controlling the body’s ongoing functions. Hypothalamic nuclei help activate, control, and integrate peripheral autonomic mechanisms, endocrine activities, and many somatic functions as well as regulating body temperature, certain metabolic processes, and other autonomic activities. It truly is the most amazing feature of human creation. CRF is a neuropeptide secreted by the paraventricular nucleus of the hypothalamus. Under normal conditions, CRF regulates the cyclical secretion of ACTH. It also coordinates the endocrinologic, autonomic, and behavioral responses during stress. It may play a key role in the

pathogenesis of CVS, including its nauseogenic suppression of gastric motility and its action on the Locus Ceruleus that is probably involved in the hyper-adrenergic features of many CVS patients’ episodes. Other neuropeptides participate in the response of the CNS to stress and further research in the pharmacology of neuropeptide receptors may provide alternative agents to opiates for the management of panic.

The stimulation of inhibitory motor nerves in the dorsal motor nucleus of the Vagus nerve inhibits gastric motor activity but is also thought to be the source of the severe epigastric pain, the core of the acute CVS attack. Evidence is not conclusive but it minimum it’s a concomitant event to say the least. The Locus Ceruleus is a deeply pigmented group of several thousand neurons in the floor of the fourth ventricle. It is part of a major norepinephrine pathway of the central nervous system. Normal, unstimulated secretions of CRF have a diurnal rhythm with increasing secretion beginning at 1 AM, reaching its peak at 6 AM. This is believed to be the reason for the onset of most CVS episodes occurring predominantly in the early morning hours, typically between 4 AM and 7 AM.

Sato and Wolf demonstrated that increased ACTH, cortisol, catecholamine levels immediately precede the vomiting phase of an attack. It was also concluded that CRF antagonists prevent gastric ileus in postoperative patients in an experimental setting and a Trunchal Vagotomy has been shown to prevent the gastric inhibitory effects of CRF on the in experimental animals Vagus. Ketorolac, a propionic acid derivative, and other non-steroidal anti-inflammatory drugs such as Indomethacine have been shown to be beneficial with hyperadrenal activity and endogenous prostaglandin release as a possible cause for CVS. These drugs are also used for postoperative pain control in dogs and topically in ophthalmic conditions such as Glaucoma. These same qualities are found in marijuana, commonly prescribed for the treatment of both ophthalmic and emetic disorders.


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"...I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug....I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick." - Excerpt from the Hippocratic Oath
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Heresy

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Reply with quote  #3 
It talks about the Vagus nerve - that's what's triggered in the "internal clenching" we experience - both in childbirth/menstrual cycles and BMs as well as vomiting, obviously. 
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"...I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug....I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick." - Excerpt from the Hippocratic Oath
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mahler1987

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Reply with quote  #4 
Im not willing to bet the farm or undergo another surgery to cut the vagus nerve.  I think there is more underlying here and one day someone will decide to research it formally.  With there being so many sub types, I am venturing a guess as to CVS as we know it to be several conditions vs just one, which is why one treatment doesn't work for most.
 
This is another theory worth investigating.
 
Pattie

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Heresy

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Reply with quote  #5 
Thanks, just letting everyone know that the CRH is essentially the driving force at this play. It's all connected, I'm just eager to know how it all works together. That's why Zofran doesn't work - it's not the problem of our stomachs being nauseous, we throw up because something is triggering or being triggered by the Vagus nerve.

My main point was just to be careful because the CRH is what throws us emotionally. I've done things I wouldn't like to admit to myself because of the stress receptor.

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"...I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug....I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick." - Excerpt from the Hippocratic Oath
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mahler1987

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Reply with quote  #6 
See already there is a wrinkle in this CRH theory, zofran works for alot of people.  I agree there is something whacked out in the brain and/or homones.  Like I said its something worth investigating.  I believe one of the medical advisors touched on this at the Boston Conference in 2008, I think.
 
Pattie

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Heresy

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Reply with quote  #7 
Oh good, sorry to have thrown a theory out there  that's already being investigated. Thanks for responding Pattie, let's hope they keep on progressing with knowledge about this so we can keep getting the word out. I'm with you all! Love and Support -

Ash

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"...I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug....I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick." - Excerpt from the Hippocratic Oath
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Heresy

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Reply with quote  #8 
And okay, I'm sorry if I threw out something some people already knew. My main reason for writing in the first place was so that maybe some people could recognize that the possible suicidal thoughts could be simply because the CRH is pumping more than it should. 

But for me, accessing and processing information is what helps as a coping mechanism. Please don't be curt, or be quick to slam down my ideas (which is very hurtful). I do come here primarily for support - that's what this message board is here for. 

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"...I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug....I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick." - Excerpt from the Hippocratic Oath
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mahler1987

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Reply with quote  #9 
It was not my intention to be curt or slam your ideas, Ash.  I don't know how to describe it  except to say that research is ongoing, but is slow. 
 
So many times something was almost seemingly obvious, but when investigated further it was a big ball of tangled up string.
 
Personally I do believe its something going on in the brain.  As far as feeling suicidal, I can think of many reasons for that, given the fact how many of the adults are treated, the lack of knowledgable medical professionals, the utter misery and agony of an episode.  Its all very daunting and wearing on the psyche.  Toss in whacked out brain chemicals and hormones, and well what came first, the chicken or the egg.
 
CVS has been around via documentation for over 200 yrs.. we're just now really starting to research it.  I was simply stating there is no one size fits all here, especially with the meds.  Im sorry but zofran works for many, but for some it does not... same goes for every first line med thats been documented.  Thats just the way it is.  If the cause and the solution was cut and dry or black and white, they would be on it like white on rice.  Unfortunately its causes and treatments remain elusive.  Only time and reseach will change that.
 
I wasn't putting you down and I am terribly sorry you took it as such.  I am a CVS'er too, I still have my moments where it goes out of control.  I too am tired of it... really tired of it.  I feel especially frustrated when there is little to offer another sufferer, like now.  Here's wishing your symptoms subside and give you some relief.  Again Im sorry there isn't more I can offer to you.
 
Pattie
 

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Heresy

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Reply with quote  #10 
Thank you. I'm so sorry desperation has made me so much crazier and the last thing that's going to help is lashing out at any of you. It's extremely humbling to know the kind of person that comes out of you when you're desperate and hopeless and in so much pain when everyone's telling you they can't help. (Which is BS in my opinion, if someone really wanted to help, they could. They just use the "limits" of their job as an excuse.)

Please believe me when I say how sorry I am. I know more than most that when people sense desperation in you, rather than wanting to help it just makes most people avoid you. I do care deeply about everyone on here and I'd hate to alienate anyone.

That said, thank you so much for the additional information Pattie. Thank you for not taking my outburst personally.

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"...I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug....I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick." - Excerpt from the Hippocratic Oath
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MiamiLargo

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Reply with quote  #11 
Heresy,
I'd love to know if you took your research into the CRF factor further or looked into the research of Dr. Yvette Tache.  I found a paper of hers very interesting but it was from 1999 and I didn't see follow up.  How are you now?  Thanks! 
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wynnak

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Reply with quote  #12 
I do not believe that Heresy has been on the boards in a long time. But here is an article that I found interesting on hormones and CVS. Since my son struggled so much each time he had a growth spurt.

http://cvsaonline.org/2014/02/07/cyclic-vomiting-syndrome-and-mitochondrial-dysfunction-research-and-treatments/

Hope it helps.

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