Registered: 1378014653 Posts: 4
Reply with quote #1
Hello my CVS family,
Today I went to see Dr. Chandra Prakash Gyawali, who is in St. Louis, Missouri. While he did seem to be very knowledgeable and said he's been working with CVS for over 20 years, the amount of time I got to spend with him after waiting five months just to get in was abhorrent. I had typed up an EIGHT PAGE SUMMARY of the past four or five miserable years of my life that I've been living with this condition, and it was very clear that he did not either have or want to give me the time to actually hear the details of my story. The good news is, after reading my paperwork, he does agree that I do have CVS, so I do believe that I have finally received an "official" diagnosis other than from my family doctor, so that is a big step in the right direction. Like I suspect many of you had to do, because my family doctor and I were both clueless as to what was wrong with me when I first started having episodes, I scoured the internet, until one day I found Dr. Fleisher's famous chart, read the documentation, and the BIG LIGHT BULB went off in my head: "This is ME!!!!" A bittersweet moment to say the least. But I am blessed with a GREAT family doctor who understands my situation very well and is VERY compassionate. I am a recovering opiate addict...I was addicted to prescription pain meds for several years, and with the help of a drug called Suboxone, I have been clean as a whistle for close to six years or so now. But because the Suboxone is partially made up of an opiate, I have a VERY HIGH tolerance to these meds. When I feel an episode coming on, I normally have to take **- **mg of Oxycodone to have a chance of aborting it. I've successfully aborted several episodes in the few months since we've started using the pain medication. Because I AM a recovering addict, my wife holds on to the pills for me and gives them to me only when I need them. It has been a great system of "checks and balances" that keeps me honest, keeps me from giving in to any possible temptation, and gives me, my family, and my doctor the peace of mind of knowing that I'm using this medication in a responsible way. In a bit of good news, this has been the first FULL FIVE DAYS I've gone without waking up feeling like I could puke in at least 2-3 months. I was working on a Master of Education degree, but because the stress was SO high and my episodes being triggered by stress/anxiety, I had to make the very difficult decision to at least take a break from school. I absolutely KNOW that that is why I've had a really good week. The previous two months before that, I was waking up literally almost every day in the Prodrome phase, having to take **- **mg of Oxycodone to prevent from throwing up. It almost always did the trick. I've only had two episodes reach the vomiting phase in the three months or so since I started on the pain medication. My question for you guys today though has to do with Cannabis. The specialist I saw today (Dr. Gyawali) insisted that I NOT EVER use Cannabis, even if it does help with my anxiety and nausea. I have read a lot of documentation from CVS sufferers, family members, and doctors (even Dr. Fleisher) that mention the use of Cannabis for CVS relief. Has the medical community reached any type of consensus on this? I use Cannabis very responsibly...only 3-5 inhalations is enough for me to get the therapeutic effect without any big "high" that may render me useless. And I normally only medicate in the evening, typically before I go to bed or before I sit down to watch my shows for the evening. For a person like me with a high intelligence and a brain that doesn't stop, Cannabis has proven to be the best medicine not only for some of the nausea associated with CVS, but also as a general therapeutic tool for sleep and anxiety. It helps slow my brain down to a more relaxed and calm state. While I typically do not use it specifically for pain, I've also noticed that it does help too if I happen to have a back-ache or something like that. So lay it on me folks....is the jury still out? Has Dr. Fleisher taken an official stance on this? I've seen YouTube videos with CVS patients claiming that Cannabis oil has all but cured their CVS, but then again, those are YouTube videos, not scientific studies. Any help that you guys can give would be GREATLY appreciated! __________________ CVS sucks. Let's do something about it.
Registered: 1111176341 Posts: 4,505
Reply with quote #2
There is a lot of Message Board discussion going on about Cannabis. If you do a message board search you will find a lot of active discussions.
At this time the CVSA Medical Advisors do not seem to agree that using Cannabis is helpful. CVSA has a Family Conference being held in June in WI. The Medical Advisors will each speak and there is also a "Speed Date with a Doctor" which is a chance for a ten minute consult with one of the Medical Advisors. The conference would be a good place to meet others who have CVS, find out any progress in treatment and if there are changing views on the use of Cannabis. If you call or email the CVSA office (firstname.lastname@example.org) and request the most recent Code "V" newsletter, you can read the report from the Pittsburgh Conference on Nausea and Vomiting. The research on Cannabis was conflicted. __________________ ginny CVSA Moderator
Registered: 1378014653 Posts: 4
Reply with quote #3
Thanks Ginny! I will send them an email.
I'd love anybody else's thoughts/experiences/knowledge if you have anything to share! __________________ CVS sucks. Let's do something about it.
Registered: 1318595593 Posts: 277
Reply with quote #4
well, Dr's in the US or most of the rest of the world, cannot study cannabis, so your doctor is guessing, period. there is no way that they could know for a fact it harms your CVS as there have not been any studies done to say one way or the other. any doctor that tells you that they know for sure it is harmful, is lying. period. I have heard the "your making yourself sick, its the weed" countless times from docs who don't even know what CVS is, let alone CHS. they just copycat the "uptodate" doctors webservice info. they don't have a clue about CVS, let alone CHS which cannot be studied at all. ask your doc for reference to the studies they are using to base their negative opinion on, tell them you are interested in learning about it. they wont be able to produce anything. if they point you to CHS, read the papers, there are less than 40 published, and they are not studies. be the judge for yourself. some docs will already and have already RX'd marinol for CVS, so ya. if pharma makes it, you will be fine. wink wink im pretty much the saem type of smoker you describe cardsfan, same thing, highly intelligent and it helps to slow down my brain at night when I want to crash among other things. that was why I started using it medicinally at an early age, as I found it cured my insomnia. it has helped my CVS more than any other medicine, and I often say I owe my life to it. I am old enough, and have lived with cvs long enough to rule out any relationship between the 2, and in my case, there is clearly none. listen to your body, not your doctor on this one, cause the US docs are absolutely full of beans when it comes to cannabis commentary. they just parrot a bunch of inaccurate disinformation with no factual basis, but they will readily RX you a dozen other drugs that are UNQUESTIONABLY harmful, and those studies are available. you cant trust everything docs say. lots of discussion here, if you look up cannabis, or CHS, there are some long threads. the CVSA itself is not pro cannabis at all, but there is a lot of compelling testimony on these boards from those with actual real life experience using it and reporting on it. some report feeling better without it, some report the opposite, its pretty varied and the jury is hardly in on it as far as CVS goes. if you suspect it, read up more on it, and give it a break. if you don't, or you have ruled it out, by all means, dismiss your docs opinion and listen to your own common sense. they don't study cannabis in med school, so you're likely have a much more valid opinion than your Doc. due to real life experience with it and that's just the plain truth.
Registered: 1318595593 Posts: 277
Reply with quote #5
here is the flip side cards:
I went and got my med marij card today. I was expecting a younger, "hip" doctor kind of deal. I walk in , and the doc is like 2 years older than dirt, mustve been 70 or just shy of. was just the sweetest man. when I told him I had been largely disabled by CVS for the past decade, he said quite sincerely, "well I hope you have been using cannabis" im like, darn skippy, its the only thing that helps short of opiates! when I described the current climate many of us with CVS face when going to see a doctor..ie (do you smoke pot? you have CHS, you are making yourself sick) he looked at me like I had just told him grass was blue and the sky was green! he was like, "don't these people realize that we know that cannabis is effective with this?" and then, he actually wanted to clarify, he was like, so you are going in and these docs are telling you that cannabis is making you sick??? he, like, couldn't fathom it! the look on his face was like that's absurd. what was cool, was he was genuinely interested in how effective things like lorazepam, opiates, etc were on the illness when contrasted against cannabis. like, he was looking to learn all he could out of that experience, our short little visit. you could tell, the guy was like 70 but still just a sponge, an open mind still accumulating data. first doc I have ever seen that was like, well, I hope you've been using cannabis. what a refreshing experience that was. the man actually THANKED me twice for "teaching him something" in relation to CVS. I was floored. It was really cool, the office was full of patients in their 50s, not the typical stereotype that is portrayed by those that would have people believe only pot smokers utilize med mj programs. not one person I saw in there looked like a "stoner". the clinic comes to our small town in remote Alaska every so often, so it was a roomful of patients being seen in one day. I think the older docs like Dr F's age have a much better comprehension about cannabis as medicine as opposed to the current generations of docs, as the older ones were already in their 30s when Nixon made the war on drugs and put herb on Sched 1 status, so they KNOW its propaganda. the current crop of docs were just raised in the full on propaganda era and just bought the lies without any compelling data to support them. just funny to me, I have had so many young docs who didn't even know what CVS was tell me, "you're making yourself sick, its the weed" and here is a guy who has probably practiced close to 50 years, or more than all of those young docs combined, and he is like, that's ridiculous, we KNOW this works. so there is another valid perspective out there cards those of us that know, know. those that don't, speculate about matters they have no real life experience with. and those same docs will write you a marinol RX while telling you cannabis is harmful. if its not a pill, made by pharma, its harmful. and in fact, the opposite is true. its all just $$$$. they are mostly just pill pushers these days, glorified drug dealers peddling substances easily as harmful as the illicit ones and frequently moreso. you pretty much cant leave the office without an rx for something. for me, the "its the weed that's making you sick" is a dead giveaway that I need to find another doctor to deal with as it is very telling that 1. they have a closed mind and 2. they are willing to form opinions about things without having any actual data to back them up, and 3. they are willing to make a snap diagnosis in the first 2 mins of talking to them. and all of those are worrisome qualities in a physician for me as it shows arrogance and a lack of empathy. those guys are usually glacing at their watch while you talk to them too. and all this while you are standing there with your records, papers and timeline of your last decade of misery and there is no way in heck they are going to look at any of that info. and then when you ask them, have you actually read the papers on CHS? "well, no". uh huh. NEXT.
Registered: 1350531576 Posts: 211
Reply with quote #6
you will have to test it out to see for yourself to be honest. I smoke mad oil concentrates now instead of flowers but they never really make any difference for me at all- that's why i advise to test it out for yourself really then make a conclusion? It does nothing for my CVS but It also doesn't really HURT either for me.
Registered: 1111176341 Posts: 4,505
Reply with quote #7
I have permission to run an Anecdotal Study on Medical Use of Marijuana.
I am going to need to run some things by the doctors because I do not know what will pertain and what will not-- this is the same as with the supplements, we did not know what would pertain and what would not (I am not "talking out loud"). I am now asking your in-put? I was contacted the other day to approve a new CVSA MB member who supplies CBD oil so if he is reading this, please contact me. I did not know I would get this approval.
This is an anecdotal study only. But it is a stat. We have no funds and to get through the hoops to go further, we need to start somewhere.
There is a former MB group in CA off the MB, users of Med. Cannabis. If anyone is in contact, could you please ask them to contact me privately? All information is confidential. __________________ ginny CVSA Moderator
Registered: 1395169941 Posts: 98
Reply with quote #8
I'd love to participate. I live in Washington state and currently use CBD tincture, capsules, chews, lolipops for pain but haven't been physically able to get anything down while I'm sick.
__________________ Goes to show you don't ever know, watch each card you play and play it slow
Registered: 1391141347 Posts: 3
Reply with quote #9
Ginny, will this study open to Canadians? I would be interested in participating. I've been using MJ to manage my CVS for 15+ years.
Registered: 1111176341 Posts: 4,505
Reply with quote #10
Yes. It is more of a Spread Sheet, pointed out to me by Kathleen Adams.
I have a connection now to a Legal Dispensary where I hope to tour. I think I will be able to interview one of the owners. He is already interested in what has been going on with the MB.
We also have a new member on the MB who deals with Cannabis Oil. I am not sure if he will be an active participant or not.
I will begin a thread as soon as the Scientific Committee has officially approved me. Anyone anywhere can participate. No products supplied. This will be anecdotal information. __________________ ginny CVSA Moderator
Registered: 1399495124 Posts: 7
Reply with quote #11
My 25:year old son has CVS and duodenal crohns. Chandra Prakash Gywali is who he has seen for several years. Diagnosed 10 years ago at Children's hospital but got too old and flipped to Prakash we live in deep southern Illinois and there are no docs here for my son. We haven't been real happy with Prakash. We drive almost 3 hours for 5 minutes of his time. We obviously can't go to Barnes emergency room every attack and are left with local er that treats my son like a psych patient or drug addict....when we go I call up to Prakash office which is impossible to ever get a live person and return calls take forever.....meds have been an ongoing issue to always having to call and wait. Our biggest issue is no local care for CVS. Since it sounds like you are inSTL you may have more success . I wish you much luck and hold on to hope for you. I look forward to hearing how things go for you. PS. Prakash same for my son about cannabis....funny thing the docat children's unofficially told us it was a good option. __________________
CVS MOM. 25 yr old male - diagnosed 10 yrs.
Registered: 1378014653 Posts: 4
Reply with quote #12
Thank you to EVERYONE for your responses.
I agree that we should ALL do what works for us. After the Zoloft he gave me actually CAUSED me to become depressed like I had never been before, I discontinued it on my own accord. I know, I know...talk to your doctor first, but I KNEW it was the Zoloft. Within 24-36 hours of discontinuing the Zoloft, I could "feel the fog" lift. I started feeling like a person again. For the four months or so that I was on it, I was merely existing, I wasn't LIVING. And I was still having episodes like crazy. It seems like a really weird coincidence, but ever since I've stopped the stuff, not only am I mentally in a better place, but my episodes have all but disappeared. As in, better than I ever was before he even gave me the stuff. Low and behold, it's a month later, I take NO prophylactic prescription meds related to CVS, and I do regularly ingest small amounts of cannabis. I know we aren't allowed to talk dosages on here, so I will just say that cannabis, for me at least, works at very low levels...it only takes a small amount to provide me with almost instant stomach relief. The doctor I saw, as far as I'm concerned, is ignorant or brainwashed by big pharma as to the potential benefits of cannabis. When I am in the throes of an episode, no, it will not abort it. But for minor/moderate stomach discomfort? It's the FIRST thing I grab. And it doesn't hurt that it does a great job of helping to curb my anxiety, allows me to enjoy things like music a little more (I'm a semi-professional musician, so this is a much-appreciated side effect), and basically "allows" me to stop all the nonsense cluttering my brain. Most of us have had that feeling of just not being able to STOP THINKING TOO MUCH and calm our minds down...I have, hands down, found NO BETTER solution for this than cannabis. For those of you who have been following the thread about CBD oil...for me, it did not work. If it works for you, awesome! If you haven't already, Google "cannabis" along with "entourage effect". If you don't have the time right now, I can put it simply: the chemicals that exist in cannabis also occur naturally in our own bodies (unlike almost all pharmaceuticals), but in order to get the full medicinal effect, most people find that using the entire plant (not just extracted CBD or THC in the form of Marinol) works the best. I was prescribed Marinol for a short time and was very excited about it. It turned out, I hated the stuff...gave me all of the "negative" side-effects one sometimes associates with cannabis, but very little of the positive. When I ingest oil or smoke the actual plant matter, I receive INFINITELY more relief. I've tried all three: the real thing, legal CBD extracts, and prescribed Marinol. Hands down, again, the real thing works best for me, and I have and will continue to use it. Just one more thing: I was suspicious of Dr. Gyawali's claim that cannabis was actually perpetuating my episodes, and for good reason. When I initially started having episodes (around the age of 26) I was not a cannabis user, and I didn't touch the stuff until I had been suffering from CVS for about three years. That, combined with the fact that I absolutely find UNDENIABLE relief in several ways from the use of cannabis, has caused me to open my eyes a little more to the fact that DOCTORS DON'T KNOW EVERYTHING. I am finding that a little cannabis is helpful, and also that I get more relief in the long-run from non-Western types of treatment. I encourage those of you who have been through the doctor and prescription drug mill to do the same. Don't get me wrong, I still have my abortive medications (Sumatriptan and Oxycodone seem to work best), but now, for the first time in a long time, those medications are not getting much use from me because I haven't needed them....thank goodness. I'm a recovering addict, as I mentioned in my OP, so the Oxycodone thing is very tough. I am very lucky to have both my mother and my wife as a great support system, and my wife has control of the Oxycodone at all times. I encourage any of you that have had addiction issues to do the same if you have the ways and means. Blessings to all, and to all a good night! -Dave
__________________ CVS sucks. Let's do something about it.
Registered: 1436372746 Posts: 3
Reply with quote #13
Hello everyone I'm new to this site but am so glad the doctor I'm now seeing recommended I check it out.... I began having episodes during my second pregnancy, about 8 years ago. it was initially diagnosed as hyperemosis and was misdiagnosed many many times after until I finally just diagnosed myself and began telling the doctors that I had CVS. My most recent bout ended April 1st and at that time I made the decision to stop all prescription meds and try natural remedies and cures.. So far I have had less bad in between days and have about another month before I find out if my next episode will come or if the things I have been trying will help but I have had no relief with all the drugs I've had fed to me over the years, as a matter of fact most of the prescription meds made my in between days worse or had horrible side effects.
I recently got an appointment with a great specialist in Louisville ky.i stayed in his office for two hours discussing my case and of course the subject of marijuana came up. His intern told him that he had narrowed down my triggers to hormone or cannabis. The doctor asked how long I had been using and why, so I explained to him that I had began when I was 14 as a recreational thing but stopped during both pregnancies and for about two years after my second pregnancy and that I was sick more often, during that time.more spells and longer episodes and that when I began to use again it became a medical thing. I explained to him that nothing stopped my episodes but that the cannabis helped with the anxiety, as well as my appetite and nausea. He quickly corrected his intern and told him it was not the cannabis it was definitely hormonally triggered and recommended that I look in to something called Marinol. He was very interested to know that I was at my worst when I was not using and he didn't seem to think it was a cause or trigger for my symptoms.nor did he recommend or suggest I quit using. As he said EVERY case is unique, and different things work for and against each individual differently.
Well that's a little bit about my story, not sure if it's helpful to anyone but I'm glad I found somewhere to talk about this disease with other people who understand.
Hope everyone has a great day, and Thanks for taking the time to read my story!
Registered: 1423616792 Posts: 169
Reply with quote #14
If you don't mind sharing, what other natural remedies are you using? I have bad side effects to Rx meds too and I always like to hear what other people are doing that's natural.
Registered: 1436372746 Posts: 3
Reply with quote #15
Well Beans, so far I've been taking tablespoons of local honey before bed and when I wake, ginger and peppermint teas and oils regularly but more often when I'm nauseous, aloe drinks, and a full heaping tablespoon of peanut butter as soon as I wake up if I wake nauseas I've also been looking into how to use my aloe plant for its medicinal properties and also looking into coconut oil, I've heard it has many uses and can be good for the digestive system...I'll get back to you on that when I learn more... Hot showers are my best friend and I've found the ice water on my face while I'm in the hot shower ( I've learned here is to trigger the vagus nerve) really seems to help. And if your a religious person I've really leaned a lot on prayer to help comfort me mentally.
This whole thing has really been a learning process and if you have any recommendations I'd be grateful If you shared any tips as well. hope I was helpful.