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Smokeater42

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Reply with quote  #1 
Hi just a note here on Anti-nausea meds, I didn't know this till it just happened to me, They can cause a illness called Gastropareses, it shuts down your gut, you can't take in the proteins you need from food and it causes your GI tract not to work, For those that don't know me, I am Smoke The King of Puke, many on here do know me, well I've had CVS for almost 30 years now ,it took 10yrs to get dxed and I only got that THANKS TO AN ANGEL OF MERCY ON HERE CALLED GINNY, she got me in contact with the Doc who is now my CVS Specialist and she is AWESOME, she and the Dartmouth-Hitchcock Medical Pain Clinc ,part of there Medical school ,the Head Doc there told me that with my Major nerve damage and Combat wounds injuries, and my CVS Medical Cannabis was my last hope, at that time I was having CVS Attacks 5 days a week lasting 12 to 20 hrs or more, Doc F my CVS Doc wanted me on it from the start 28 years ago BUT it wasn't legal in my state, well 3 years ago my state made it legal and with Both of those Doc's they got me on the program, I take the oil 3 times a day and I have gotten the Attacks down to just one a  week for me a blessing and a walk in the park, its normal for me to pull or tear muscles & tear my throat the vomiting was so violent and I have 3 different strains of the flower, thats like different doses of Pain med one for normal nerve pain and i'm not high or zombie like, the next level is for hard pain, I can drive or anything else BUT don't like too, the 3rd is the WICKRED BAD PAIN I use and I am not going anywhere but bed, it stops the pain and nausea so I can sleep, BUT like all CVSers good times always end the end of May started the heat and humidity crap temps of 115 with 86% humitidy a BIG TRIGGER so I have to take more oil to stop the attack  BUT NO WORRIES no matter how much you use you can't OD, that wasn't the case for my scrip meds, I was at the OD level for ALL OF THEM, is why I am on the cannabis, BUT its expensive, I normally use one bottle of oil a month BUT to stop the triggers I have to use more one big bottle is 100 dollars, like most on here, I can't afford a lot, now I am back to vomiting everyday, I could stop the attacks with the oil BUT i'd have to spend 500 for that many bottle, the price is high because even in the States where its legal The DOJ messes with the dispensaries' with lawyers so they have to up the price to cover there lawyers fees, Once its legal on the Federal Side then the prices will come down ALOT, I can't take the Medical Cannabis with me if I go home to Michigan, if you take it out of State or onto Federal land and get caught its 15 year Mandatory  the heat wave lasting this long 24/7 I ran out of oil within a week and ahalf so I had to use the Scrip meds, Well going back on the high doses did me in and gave me this illness, like most CVSers I had Slow Gut, ( VERY SLOW GUT ) Well it stopped completely now, I have done ALL THE Laxative shuffle even Citercil Nothing no BM 3 weeks now I see Doc F on next Tues, BE CAREFUL WITH THE ANTI-NAUSEA MEDS FOLKS, DON'T END UP LIKE ME !!!!!
Heave Hooooooooo
Remember We are The Few , The Proud , The Pukers, SO PUKE WITH PRIDE
Smoke
Out 

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wynnak

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Reply with quote  #2 
Hey Smoke, 

Welcome back!

Several of the anti- nausea meds will slow the GI tract. Same with opiates. Seems like a never ending battle, huh? Just wait until they throw on things like LQTS, or Long QT interval Syndrome. Which means you may use maybe one anti-nausea med and that one has horrible side effects. They had my son on miralax for a long time, and even that is said to not be the best.. So he uses fiber gummies.

Thanks for the update.

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Smokeater42

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Reply with quote  #3 
Hi ya Blynda  ^5's I've been doing AWESOME on the cannabis oil, just this heat and humidity crap thats been 24/7 since May messed up my trigger, Doc F says because I had to be on such high doses because of my slow gut, pills didn't work very well so they had to make it high because of that so they'd at least get enough into me to help alittle, I was on 8 of them, since being on cannabis I went rom 17 pills a day to just 2,even got to get rid of my heart pill , my heart Doc told me he was surprised that it handled my BP  hehe, this just took me back, I never dreamed that this could happen, now other specialist are invold a few are saying feeding tubes because I can't process the foods , I went from 320 to now 160 and I normally had a BM once every 2 weeks that was the norm with my slow gut for 25 yrs BUT now my gut has stopped working completely , I just wanted to warn folks to talk to there Doc about them because I don't what happened to me happening to others  HUGSSSSSSSSSS
Heave hooooooo 
Smoke
out

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ginny

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Reply with quote  #4 

Hi Smoke, so sorry to hear about how sick you are with heat, humidity and of course the horrible medication side effects.  I think everything prescribed to help with CVS does have the potential for delayed gastric emptying which in turn can cause nausea, vomiting and pain.  When the nausea vomiting and pain start up, there is often an increase in the meds which help with some of the symptoms but of course things progress and get worse.

This is the reason Dr. Fleisher would take his patients off all their meds and start over.  Many were not wiling to do that. 

If you are up to reviewing some of BathBoy's posts, he does a great job explaining.  

I am not seeing much improvement with the weather any time soon.  I hope you have a room with air conditioning, maybe buy one of those "individual" cooling units-- I think the prices start around $29 at Amazon, stay inside, try to move around but not get heated.  

An NG tube can help alleviate the abdominal pressure while the intestines are not working.  I don't know if a g or j tube would help but Dr. F will start TPN if needed.  Any chance of seeing her much sooner?  This sounds like you really need to be seen ASAP.

Keep in touch.  


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Smokeater42

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Reply with quote  #5 
Hi ya Ginny no in June with a Tornado went through our Town it took out my Truck so we only have one Veh. till the Insurance gets there act together, they wanted to give me 4000 less than the truck was worth, but won that waiting for the last payment so I can get a new one, Jo' is also her Dad's caregiver and she has to take him back and forth to the hosp so she's gone 3 days a week or more, next Tues is as soon as I can and Doc F is staying late for me, yea Angie Moore remember her from here years ago, she's on FB CVS I talk to her ALOT in fact her and a bunch of CVSers won me a Firefighters cold mug  MAJOR SMILES !! She told me when the heat first started about the cooling vest called Hyperkewl on Amazon , I got it in July  been nice I use it when I go out and stay inside in the A/C durning the day and night only leaving to go to Doctors Appts, I've only been able to ride a few times this year :-( :-( because of the CVS and heat, if I could afford more oil I could beat CVS, but when the Feds finally make it legal on there level the prices will drop big time, the soonest  I can get to Doc F is tues, can't read today, waiting for Jo, Rock has a Dr's Appt but will read that later on tonight  THANK YOU AGAIN FOR BEING THE CVS ANGEL
Remember folks We are The Few,, The Proud ,, The Pukers , SO PUKE WITH PRIDE !!!!
Heave hoooooooo
Smoke
Out 

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bayarea

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Reply with quote  #6 
Hi Smoke,
Literally woke up thinking of you as I’m writhing in pain. I thought I had gotten a hold of my cvs but it’s back and worse than ever.
The pain and vomiting is so exhausting sometimes I wonder how my body keeps going. The depression is so real and the pain is even heavier
No insurance no doctor where I just moved to
Feeling so out of hope especially without any of my medicines for nausea or pain. Cannabis brings limited relief. Not sure how much longer I can go in like this. I’m glad to see you’re still
Here contributing to the cvs community
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wynnak

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Reply with quote  #7 
BayArea.. are you in the SF Bay area? UCSF is very familiar with CVS. There is also a Doc in Turlock that sees several CVS patients. 
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bayarea

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Reply with quote  #8 
Yes! I just moved back to SF Bay Area. Do you know the names of any of
The doctors? I’m desperate
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wynnak

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Reply with quote  #9 
UCSF should be aware of CVS if you go there. My son was a case study there, and their inpatient procedures were changed because of him. Even Nurses are aware of CVS now. We see Peds currently, but they have said that CVS being a pediatric condition could mean that he can be seen upto  age 30 on the inpatient floor. I do not have a Specific Physicians for adults, but you could call over to their pediatric heachache clinic and ask who Dr. Gelfand refers her CVS patients to. 
Turlock is Dr. Furaji. He has not accepted to be on our referral list, but several people here is Sacramento go see him. So his name is pretty well known.

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ginny

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Reply with quote  #10 
Smoke, heat and stress are not a good combination.  Take care and let us know how you are doing please.  I have never heard of the cooling vest, great information and I am sure very helpful.

bayarea, we did have a message board member who was in contact about the SF area and medical care there.  He moved to Texas, and did not hear from him much after that-- hopefully he is doing well.  He and Smoke were both first responders at 911 so you might find him by matching some of Smokes and his messages.

Also, Jessica Everington is a long time Bay Area resident who was an active message board member and still has a CVSA message board membership.  You might reach out to her as well.

I do think Blynda's suggestion on calling a strong pedi MD and asking who they refer their kids to when they age out of Ped's is a great suggestion.

Smoke has his CVS MD in Boston because she is or was the Children's Hospital referral for continuing care on an adult level.

My kids, well into their adult years, are seen at Chlldren's for some stuff (not for CVS) but in-patient care would be at the adult hospital.




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bayarea

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Reply with quote  #11 
Thank you Ginny and Wynnak sooo much gonna try these leads
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Smokeater42

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Reply with quote  #12 
Naw Ginny i'm just venting, seams like with CVS ,you just it under control and BOOM it hits you with something worse, ,Doc F is still the contact just isn't taking news Pt's she has around 50 now, BUT there's other Doc's at BWH that do CVS and she refers them to one of them
Heave hoooo
Smoke
Out

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wynnak

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Reply with quote  #13 
Smoke,

Do you use cooling towels? Those vest and they have shirts too with the cooling systems in them. My son is heat activated and we live in California.. not only are we on fire right now (the state) it is also on of the hottest on record. We have to keep my son cool. So cooling towels and all clothes that are cool and/or sweat wicking. We were also able to get his doctor to indicate that an a/c for his room (cooler than the rest of the house) is a type of medical device. There is a process to that, but if you are heat activated.. that can help.

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Smokeater42

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Reply with quote  #14 
Yea my you soak in water and then lay the inside on a towel and role it up to get excess water out, it works great, Angie told me about it, she's doing AWESOME with her CVS too using the cannabis oil like me, she Mountains climbs, she's gone ALONG ways from when she was on here and so sick, Tell your son TAHNK YOU for me, I was Blessed to be in a Full Time Fire Dept that even though I was a Capt-Paramedic they let me go out west to fight the wildland fires with our State Forest Hotshots, I started as a Smokejumper BUT Forest Service dropped the Smokejumpers for the Northeast so I because a hotshot, got to go out for a month each year, WAS GREAT LOVED IT, but thats a young mans game, I am way too old and sick to be climbing up one side of the mountain fighting fire and fighting fire down the other side for 18 hours a day and sleep on the ground near the fire for afew hrs and do it all over again, LOVED IT BUT JUST TOO OLD to do it anymore so THANK him for me and tell him to keep it safe
Heave hoooooooo
Smoke

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