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Jody_54

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Reply with quote  #1 
I am a pediatrician working in Switzerland, where I have a few patients with CVS. Does anyone have experience with Cannibinoids as abortive or pre-emptive treatment in children with CVS who are refractory to other preventive and abortive treatments?

I would be grateful to hear any stories of success or failure, and please be specific about which preparation you used.

Jody
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wynnak

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Reply with quote  #2 
Hi Jody! 

Welcome to the message boards! This is a great place to get and participate in patient experiences.

If you are looking for assistance in the medical field, I would try contacting the office for a consult with one of our medical advisors. They can also offer you advice on the refractory patient. They could talk to you about the scenario and what medications have been tried and what dosages. 

The moderators on here are not medical professionals. We can offer suggestions and advice based on our personal experiences. 

My suggestion would be to talk with the medical advisor. Email the office for an introduction to the appropriate advisor: cvsa@cvsaonline.org

I will also be PMing you.

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RachelMolly

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Reply with quote  #3 
Hi I am new to this organization and very much want to share my own experience as a person who has lived with CVS since I was 7 or so. My case I think is unique in terms of my symptoms but the end result is I surely suffer from CVS. My husband is a neuropsychiatrist and essentially said I had “migraine of the stomach.” It pains me to even write about it because it seems that if I even think about it I may cause myself to have an episode. And my episodes are simply terrible.

As a kid my parents gave me various things which didn’t help. A couple of times they gave me Donnatol which is phenobarbital which worked a couple of times only because It knocked me out for my episode. I will write another time in further detail what my own battles have been with this disgusting disease.

As an adult (I am 46) I have found tremendous help with cannabis. It is my medicine and I feel like the only thing that can get me through my episodes. Thank g-d for this miracle plant! I am happy to speak with you about it even though I am an adult. I do wish this existed when I was a kid. I speak openly with my parents about how cannabis helps with my “yucky tasting burps and throwing up stomach aches” but they still have the social stigma against it, I think.

I can speak only anecdotally but I am so tremendously grateful for this plant.

The pain that I suffer from my variety of CVS is truly terrible and when my episodes are over (usually for me they can last 12-72 hours) I am so happy that another one is behind me.

I am so glad to have found this group! Finally I think I know what I have...sort of.
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Jody_54

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Reply with quote  #4 
Dear Rachel,
I am a doctor who takes care of a few patients with CVS in Switzerland. Could you tell me exactly what type of cannabis preparation you take? What s the amount of THC and Cannaboid, and in what form (smoke it, cheables, drops?). And finally, what is your "protocol," meaning, when do you take it, how often, how long?
Thank you kindly for your response, 
Jody Staehelin
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RachelMolly

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Reply with quote  #5 

If I am not repulsed by the oil, I will start with a 10mg dose in the form of a liquid tincture.  Usually that will be enough for me, but if in 2 hours I am not feeling relief I will take 5mg more.  That's half a droppersful.

This is not an exact science, and I'm not a doctor.  I do wish that a more regulated dosage recommendation was available, and that a spray was available.  Because the tincture oil is thick and when I'm in the middle of an episode it is quite naseating to take it.

So, unfortunately if I can't even go near the tincture I will vape the cannabis plant.  I do this in the form of flower (dried plant) ideally via a vape which will accept the organic material  (the Pax Plume takes plant matter).    Vaping a plant is much healthier in my mind that smoking anything, whether it's via a rolled cigarette, a water pipe, or a glass "bowl."

I take a few hits and usually feel the euphoria which helps my stomach relax.  I will lie down and usually my vomiting goes away.  

I hope this helps.  I am grateful for every day that I do not experience my episode of CVS as it is so disgusting and debilitating.  Thank you for this reminder that I haven't had an episode in a long time.

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