Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 3 of 3      Prev   1   2   3
bratdawn

Registered:
Posts: 62
Reply with quote  #31 
I have never used Marijuana, but I agree with the person who made the comment about the cigarettes. I hated smoking..I hate the smell on your clothes, through your house, your breath, etc. I was never a smoker (except for in high school-you know-trying to be cool.) However, I began to get the urge to start smoking again several years ago, before the CVS started. It was hard, because I raised my kids that smoking was bad, and we were a non-smoking house...now I was sneaking cigarettes!

When Dr. Golden at Tampa General Hospital gave me a copy of the December, 2003 article "Empiric Guidelines for the Management of Cyclic Vomiting Syndrome"(I wish I knew who wrote it, and where it is published!) it amazed me that smoking cigarettes is one of the things that CVS'ers try to combat nausea! It explained why even though I was nauseaus, I still craved a cigarrette!

The article also explains that we sneak water because it dilutes the bile/pain, and that we sometime self-induce and in NO WAY are they (the Dr's.) to mistake this for bulemia. Of all the research I've done on CVS, this was by far the best article I have read, as it explains to the medical professional EXACTLY what I am feeling when I present to the ER, along with recommended doses of medications for them to treat me with..the exact ones that work for me! It even recommends the Valium over the Ativan or Xanax which I have a hard time with (gives me amnesia).

A few medical professional have on the sly recommended Marijuana to me, but it's not legal in this state. My PCP has told me that if it ever does become legal here, he will be prescribing it for me-he has no problem in doing so. However, because of the stigma attached, I may have a problem wanting to try it...I guess it depends on how desperate I get!

If you haven't read this article, I encourage you to look it up...I cried reading it, because I felt it was written about me. It described every agony I experience during an episode. This is the article I give unknowing ER Docs when I have to go in, and I haven't had a problem since.

Good luck to all of you!


__________________
Dawn M Hunter-Risas
0
ginny

Moderator
Registered:
Posts: 4,378
Reply with quote  #32 
The Empiric Guidelines were written by Dr. David Fleisher.  On the CVSA Web Page, click on Medical Advisors, scroll to find Dr. Fleisher and then go to his own web site for more information about him.

The Guidelines have been kind of the bible of CVS treatment.  I have copies of them stored all over the house and in my car *just in case*.

Dr. Fleisher delayed his retirement several times so he could continue to care for his CVS patients.  People flew into MO from all over to be diagnosed by him and for him to help create a plan of care and help coordination with the patients local doctor.

He is a great guy personally and professionally.



__________________
ginny CVSA Moderator
0
bratdawn

Registered:
Posts: 62
Reply with quote  #33 
Ginny, Thanks for the information! Nowhere on the article (photocopies) does it mention his name, or the publication. As I mentioned, it is the BEST information on CVS I have read. Now that you mention his name, I believe this is the doctor that Dr Golden mentioned as "wishing he could send me to".

 Either Dr Golden, or one of his partners (I think it was his partner, but last I tried to get in with him, he was on sabbatical...I think he either moved or retired) contributed to a medical text book on CVS--so that's probably why the younger doctors seem more willing to work with us..they were actually taught about CVS in medical school! If you are in Florida (especially the Gulf Coast) Dr Golden at Tampa General (part of the University of South Florida Health Systems) is very good at diagnosing and treating CVS...he takes it VERY seriously and gives you the help you need..This information he gave me by Dr Fleischer has saved me in ER's many times. He told me to carry it with me (like you are Ginny) at all times, because I would need it when seen in ER's by Doctors who don't know what the heck I'm talking about...He was right!





__________________
Dawn M Hunter-Risas
0
bratdawn

Registered:
Posts: 62
Reply with quote  #34 
I am sorry, I quoted some wrong information in my first post regarding the lorazepem/Valium...Lorazepem (which the article recommends) IS Ativan. Diazapem is Valium..I just wanted to clarify that. I read the information wrong, and did not want anyone to be mislead-although I am sure you guys know that anyway!

__________________
Dawn M Hunter-Risas
0
lostboy

Registered:
Posts: 1
Reply with quote  #35 
Has anyone looked in to histamine dump as an immune response leading to acidosis....inflamed lungs from smoking cannabis and eating before bed can lead to blood acid problems due to gas exchange issues and low force breathing ?....Cigarettes may help due to vasoconstriction....? 
__________________
D Wills
0
cableguy

Registered:
Posts: 21
Reply with quote  #36 
I have a new gastro doctor I seen this week and of course I had to hear that cannibus is a trigger. Certainly ready for that argument. I have smoked for 35 years. Daily. My CVS started at 22. Went into remission for a few years then back. Went into remission again and then came back and stayed with me another 10 years. For the past 4 years it had stopped. These past few months it has came back with a fury. At no time did I smoke less nor quit. Doctor couldn't explain. Kids very young get this and adults who never have smoked. Again doctor couldn't come up with an answer. My other options are taking opioid medication. That wont happen with all the people getting strung out. No thanks. I have severe PTSD. Cannibus has always helped and I have a normal life. With the exception of the CVS. Then gave me medications to try. Will see. I only hope they dont make me quit. Indid that before and it changed nothing.
0
ginny

Moderator
Registered:
Posts: 4,378
Reply with quote  #37 
There are several others like you who do not feel their CVS and Cannabis are related.  And some such are helped by medical Cannabis.  

Dr. Fleisher would have his patients off all their medications while under his care.  He told me that otherwise it was impossible to know if the meds were causing CVS symptoms of aggravating the symptoms.  I assume it is the same with Cannabis.  If you can try a few months off, your doctor might agree you are better using.  I don't know what the doctor will suggest for the PTSD.

Cannabis and most of the CVS preventative and abortive meds do further slow gastro emptying.  Delayed gastro emptying can bring on nausea which can lead to more meds and further slowing and then the vomiting can start.  

Most CVS adult do complain about delayed gastric emptying.  Dr. V states that CVS patients have rapid gastric emptying except as a cycle approaches and then things slow down.

I hope you and your doctor can work out an agreeable plan that allows you to function at your optimum. 

__________________
ginny CVSA Moderator
0
cableguy

Registered:
Posts: 21
Reply with quote  #38 
I did quit all meds including cannibus and nothing changed. It got worst. My anxiety increased which brought on more nausea and cycles started from there. As for PTSD drugs. The ones I was on were very addictive and I couldnt funtion. I just get tired of seeing ER docs during a cycle and lisen to his lecture on why cannibus causing me to get sick. Vicious cycle
0
ginny

Moderator
Registered:
Posts: 4,378
Reply with quote  #39 

Would your doctor agree to a direct admision?  

I can only imagine how tiresome this all is for you.  It is a vicious cycle.  

Please let us know how you are doing.


__________________
ginny CVSA Moderator
0
cableguy

Registered:
Posts: 21
Reply with quote  #40 
Never heard of direct admission. I am seeimg my doc again in May Ill have to ask. I am trying to get something from my doc that could get me in the ER sooner and started on meds. A wait and see game right now
0
ginny

Moderator
Registered:
Posts: 4,378
Reply with quote  #41 
Personally we have had to wait for ER even though the CVS Medical Advisors suggest the quicker the CVS patient is seen and medicated the shorter their misery.  I hope the ERs have improved.  One time my daughter was sitting in the waiting area in a wheel chair.  I went to the bathroom to empty her basin and while I was gone she was too weak to remain seated so she slumped to the floor.  The staff got her a gurney and brought her back into the treatment area.  I don't think we were seen any sooner but at least she was within reach of the staff and not sitting out in the public areas.

Best of all was direct admission.  She would be greeted by a wheelchair at the curb, taken to her room and meds were started.  While this was going on her dad would be filling in the admission forms.  Such an improvement on the ER.

We carry a letter outlining meds suggested by the treating doctors and also the Empiric Guidelines.

Good luck, hope your doctor will agree to direct admission. 

__________________
ginny CVSA Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.