Cannabis

[Janey]

A friend of mine self-medicates with cannabis for pain and nausea management. As my bowel dysmotility is probably my worst symptom of them all, she has suggested that when I get it really bad I should take a tiny bit of cannabis and it will help my nausea and pain and get my gut moving.

Obviously I can see the potential pitfalls with POTS and drugs (I've never, ever taken any drugs before) but my symptoms are so bad sometimes I would consider this.

Anyone tried it? Anyone have any idea what it would do to someone with autonomic problems?

Janey

[jjb]

Do you live in one of the states where you could at least het Dr approval?

several years back I had aked my PCP about this and she was supportive and even told me about safer methods of trying.

Unfortunatley the side effects from it were too much for me.

There are plenty of papers out there re it being a good antiemetic, but I have not heard of it helping w/ motility issues.

A friend of mine self-medicates with cannabis for pain and nausea management. As my bowel dysmotility is probably my worst symptom of them all, she has suggested that when I get it really bad I should take a tiny bit of cannabis and it will help my nausea and pain and get my gut moving.

Obviously I can see the potential pitfalls with POTS and drugs (I've never, ever taken any drugs before) but my symptoms are so bad sometimes I would consider this.

Anyone tried it? Anyone have any idea what it would do to someone with autonomic problems?

Janey

[EarthMother]

I live in a medical marijuana state, and if I thought it would help i'd talk to my PCP. However from what I read -- gosh can't recall where -- it would tend to excaserbate my hpyeradrenergic symptoms. So at present its not high (only small pun intended) on my list of new things to try.

[Dawg Tired]

I have wondered about it. I could oh-so-easily grow my own here.

IF it were to relieve pain, keep me from being nauseated, AND help motility issues - I would do it.

But I have really never heard how it would do for one of us.

[Maxine]

When I was younger and smoked it, it would tend to make my heart race and make me paranoid. I wasn't a big smoker, but a regular smoker of small amounts. It depended on the type of weed on how if affected me. I quit many, many years ago. POT killed my appetite----the opposite effect.

My brother who who passed away from his colon cancer tried to self medicate with the weed on the street, and ended up in the ER with a 230 heart rate. I think my brother also had mild POTS and EDS. He had heart spells several times in his life, just not that high. His heart was normal, and he didn't have coronary artery disease. He was given marinol which is a drug derived from marijuana, and it worked nicely for his nausea and helped increase his appetite.

I wouldn't recommend the street stuff for helping with nausea and appetite (might mess with your heart), but maybe prescription form won't----it didn't bother my brother.

Here's a link;

http://en.wikipedia.org/wiki/Tetrahydrocannabinol

http://www.usdoj.gov/dea/ongoing/marinol.html

I hope you can get the nausea controlled, and improve your appetite.

Maxine :0)

[erik]

It's famous for the anit-emetic effects. A potential short-term side effect is orthostatic intolerance, too... not ideal for POTS but like with everything (such as coffee) one can work around undesired side effects sometimes and people tend to respond differently.

[nforste]

I used to smoke pot every so often a few years ago. I suspect that I developed a mild form of POTS or dysautonomia in the midst of this because there was a change in how my body responded to the drug - would get nauseus, have absolutely no coordination, head spun, heart would race, really really dry mouth, and had noooo concentration and couldn't focus on a conversation. Sounds like POTS hey? I'm not sure if it was the tobacco my body was responding to (don't handle being around cigarettes well now) or the cannabis, but it wasn't much fun.. and hence I stopped smoking it. Lol, and now green tea is my drug of choice when I have a queasy stomach - how rebellious!! So, from personal experience.... I wouldn't recommend smoking cannabis because it seems to exarcebate auto symptoms, even really mild ones.

[toddm1960]

I think Erik hit the nail on the head........it would help half of us, and make the other half worse. It's been 30 years since I have smoked, I wouldn't have a clue of how to get it now........lol. Oh well I guess it's always something.

[Maxine]

Toddm1960--------------------LOL---------------from what I heard it's horribly expensive now--------back in my day it was 20 bucks for a 1/2 ounce. I was born in 1959............... The good old days........lol. We were a wild bunch.

I started having bad reactions to it in the early 80s, and I never smoked much anyway. My drug of choice then was beer, but now I can't even drink one without messing with my POTS. Once in a while I split a good import with someone.

Maxine :0)

[MelissaCrystal]

Cheap weed and certain strains KILL my heart rate, but I smoke all the time, and the strains related to ""kush" really mellow me out and cure my nausea. When I'm having hunger pains and weakness from a day of overexerting myself, it cures me of that too so I can actually stand while I cook myself something rather than crawl to the fridge and hope something is prepared.

I know it is different for everyone, but I don't think people should knock it before trying all the pot options. For 4 years I thought I couldn't handle smoking it, but I've been doing it for a year now and I'm SO glad I discovered I can, if I'm careful with the strain and quality.

I only do a little, doesn't take much for me to feel it. But only a little is all I need to cut the edge off some of my severe symptoms. It's a life-saver for me.

It's definitely expensive, and I can barely afford it, but it's an expense I feel that is worth it for me. I can't take sleeping pills because most don't work, and others give me bad side-effects---pot doesn't, and it works if I get a sedative one. And my docs refuse to put me on anti-nausea drugs because they're no good for long term use, but luckily pot does it for me perfectly. My two brothers have nausea and morning sickness too, and pot is the only thing getting them by. Saved me from many crashes.

[sandymbme]

It's been a while since I have tried it, but since getting sick the one time I tried my BP dropped like a rock and I fell asleep in a stadium of 80,000 screaming Cleveland Browns fans. Not something I would try again. Made all of my potsy symptoms much worse!

[Sunfish]

i see that no one has mentioned marinol, a still-fairly-new prescription med that is totally legal in every state (w/ a script of course), better regulated, etc. by no means am i saying that i wouldn't try the "real thing" if there was any inkling that it would significantly improve my life - i would - but i wanted to inform anyone who might not be aware of the prescription option. fyi i did try the marinol for GI symptoms (related to my severe dysmotility) several years ago and for me it did absolutely nothing in the GI department while making me feel a bit out of it overall (not in a good way); the "out of it" wasn't horrible & - had my GI symptoms improved dramatically i would have gladly tolerated it at time - but seeing that i wasn't getting any benefit there was no sense in continuing.

for those who don't know, marinol is a synthetic replication of THC - the active component of cannabis that most folks (medicinal or otherwise) are after, so to speak - and was originally developed (and is currently approved for) severe unrelenting nausea &/or anorexia (lack of appetite) in AIDS patients &/or cancer patients undergoing chemo. personally i had no trouble w/ insurance coverage but i have heard of some others in the GI-dysmotility world having to work a bit harder for approval (though still having success in the end); i should clarify that i was already dependent on IV nutrition & hydration by the time we tried it such that i had severe dysmotility that was very well documented (as were the complications/ hospitalizations it was causing, either directly or indirectly).

bottom line in my book is that i would want - and highly recommend - at least one medical professional to be "in the loop", even if not technically able to recommend/ prescribe for anyone considering trying anything new of any sort to treat any already-existing diagnosis (and/ or related symptoms); i am familiar with multiple other situations (personally &/or from others) in which a physician couldn't officially give an okay or recommendation for a med, drug, etc. (something overseas, cannabis, etc.) but s/he could/ would still have a hypothetical sort of discussion with the doctor (or NP, PA, etc.) in order to at least have unofficial confirmation that there aren't any strong contraindications, problems, etc.

hope this helps & let me know if you have any other questions re: the marinol &/or re: GI dysmotility issues in general as i have definitely "been there, done that" (and continue to be!), both personally & via volunteer involvement w/another non-profit supporting patients w/ GI dysmotilities (gastroparesis, intestinal pseudo-obstruction, etc.).

melissa

[Janey]

Wow, what wonderful, non-judgemental replies! Having read all your responses, I think that I'll see if my Doctor will prescribe me Marinol when the time comes (thank you Maxine and Sunfish for suggesting this!). It seems like a safe way to explore whether that might be the answer without any 230bpm HRs, crazy BPs and hospital rushes in the middle of the night! Anyone know whether it is a prescription available in the UK?

Getting prescribed Marinol will be a long road.. I suspect my docs will probably want me to exhaust my use of metoclopramide, compazine and domperidone before I go there..but at least I know it's an option that I can try in the future. I tend to get rather bleak about my GI symptoms (more than POTS and EDS pain) because they are the ones that actually stop me interacting with others and talking to them. If I feel nauseous, the last thing I want is a conversation!

Janey

[Janey]

Sunfish, thanks so much for your advice. Seeing your post prompted me on to your website and then to read your member of the month write up. I'm so impressed by the way you cope with all this, and thank you for offering support over GI issues.

Janey

[casey311]

I'm so glad someone brought this up. I smoked pot every day for almost 8 years and this was before I was diagnosed with POTS and I was fine. Then I stop smoking to have children and I get POTS. My fiance jokes that maybe I should try it and see how it makes me feel but I'm so scared. I'm not scared of the actual drug since I've done it many times before but now that I have my POTS symptoms I'm scared that it might make them worse. But knowing how I reacted to it before, just making me very mellow, no pain, I actually had an appetite and could eat and it definitily helped me go to sleep and STAY alseep at night. It's like you just never know, I would kick myself if I ever end up trying it and it actually made me feel better.

[erik]

... I suspect my docs will probably want me to exhaust my use of metoclopramide, compazine and domperidone before I go there. ...

I don't have experience in those meds but Ondansetron might be one to add to the list. I made personal note of it because it is said to tamp down on vagus nerve activity (which may relate to some autonomic problems)... but I guess it's certainly an anti-emetic and has other uses noted:

http://en.wikipedia.org/wiki/Ondansetron

[ramakentesh]

I think Erik hit the nail on the head........it would help half of us, and make the other half worse. It's been 30 years since I have smoked, I wouldn't have a clue of how to get it now........lol. Oh well I guess it's always something.

Im not sure on that one.

Marijuana ofcourse results in orthostatic hypotension - lowering orthostatic blood pressure through vasodilation. But is also messes with the nitric oxide system and can result in hypothermia. The nitric oxide system is implicated in the vasoconstrictive form of POTS - Low FLow POTS - where there isnt enough nitric oxide available to operate the sympathetic/parasympathetic system correctly and due to there being a deficit in neuronal nitric oxide, the body is overly sensative to normal levels of norepinephrine.

My friend is a regular smoker and has offered me some many times - ive smoked it three times and on two of the three occasions it sent my hyperadrenergic symptoms mad - I was shivering, cold, heart beat going through the roof, anxious etc. When i was young i smoke a few times and only got positive effects so this seemed for me to be a POST pots symptom. The third time I smoked it i felt great and just nice and my POTS jitters went away so work that out...

I know a few POTS patients that say it helps and if it did for me Id have no quams in smoking it. But for me it seemed to make me feel worse rather than better.

I guess everyone can be different as well. I find alcohol can be helpful in low doses (1 beer) but most find the opposite.

[yogini]

I think Melissa is right that it's good to have a dr in the loop. When thinking of treatments, I always lean to meds or supplements commonly used for POTS listed on the DINET site. You are more likely to get results with those. If you have nausea, there are lots of things people have tried; some are meds, and other things are non-medical, such as going gluten and/or dairy free. You can read through old posts here or join a GI support group online.

[Janey]

Yogini,

Is there a specific dysautonomia GI support group?

janey

[Maxine]

Sunfish,

Marinol is mentioned in my first post on this thread. My brother used it to help his nausea and appetite when suffering the side affects from chemo that treated his colon cancer. his nausea wasn't overly severe, but his appetite was poor. He tried smoking it while he was sick, and that is when he ended up in the ER with a Hr over 200 bpm. He didn't have any side affects from the marinol.

Maxine :0)

[jagpots13]

I'll tell the truth, even though it's gotten me in trouble before, anything to help. When I have a "bad" bout of nausea.. The kind when I'm throwing up 20 violent times in 30 minutes. I'll make my husband go get me some. And I will FORCE myself smoke in between pukes. Although it makes me feel worse while I'm smoking it.. It doesn't take long and it makes the symptoms A BIT less severe. And at that point, I'll take any little percentage I can get of feeling better. NOTHING else even makes a dent. But I will say be careful if your on pain management. I had a "bad" throwup episode, smoked, had a Dr apt same week. After 2 years of no drug tests of course got tested. It was positive, they dropped me, and couldn't care less what the reason was. It only happens to me a few times a year now and everytime I smoke. Crazy how alcohol is legal (which I can't drink at all now because of POTS symptoms) is so hard on the body and Marijuana is so helpful in many ways is not. Oh well, same ole song and dance with all of that. But I also should mention if you didn't read "my journey" that when I am having this crazy bout of "bad" throwing up everything in my body is reverse from my normal POTS days. As in NEEDING hot water, NEEDING heart rate to be up to get ANY relief, things I can tollerate none of on a normal day. It does make my hr go up so be careful if you try. I would only recomend it for horrible bouts of nausea. It's very strange but that's my body!!

[firewatcher]

bumping for Susan

[zaks27]

Thank you!!!

[jem15]

Marinol was prescribed to me during cancer treatment for nausea and pain.. they never mentioned any motility benefits though I had severe constipation during chemo.. but the motility issues you're talking about may be different.. anyway.. though I didnt get my POTS diagnosis till after treatment, I had POTS symptoms for 14yrs at that point..

Like someone above said, everyone reacts differently, but my personal experience was I got sicker on it, it made my lightheadedness/dizziness symptoms worse.. didnt' help with the nausea or the pain for me... and also, I saw you mentioned compazine.. that was another drug they gave me, but i never tolerated it well, got more dizzy, so it didnt work for my nausea.. then after treatment.. i read/heard somewhere.. maybe it was a presentation on OI.. oh, i think it was a link someone on this site provided, maybe it was a dr from john hopkins talking about some medicines that tend to make POTS worse.. and compazine was on there.. i knew it! my drs never believed me that it made me worse.. anyway...

that was my experience.. but i agree that if you want to try it.. getting the rx is the safer way than trying unregulated stuff off the street. and then your dr can monitor your side effects more,, you can adjust the dosage..etc.. things you cant do with the real stuff

[hilbiligrl]

hey girls and all.... ive been waiting so long for this post! I started experimenting with cannabis and my 'possible DYS and CFS and mcad'. I have found that just hitting a joint maybe 3 times does amazing for me. It give me my energy i need, takes away all my symptoms and just makes me feel normal. I can be in a severe attack (which is suspected as a seizure now) and i can be totally paralyzed from head to toe and not able to communicate..... this can last for days, hours, sometimes weeks. Well, i realized, that when an attack happened, i could hit a joint about 2-3 times and in 3 mins im up and walking, talking, and almost normal. For me, it's amazing. But i cant smoke too much cuz i just dont have the desire to be high. But seriously, if i wake up really sick, i might hit a joint 2 times to kick away the spells.... if i have an attack, i'll do the same.... and its like a ragdoll coming to life. I mentioned this to my new doc and he was very interested in it. We are gonna try the marijuana pill in the future, but i have a feeling it wont work as well.... and id rather have the real stuff and not something chemically made.

In my worst spells, ill take it daily if i have it. But these past 2 mths, i havent needed it. It takes away my weakness, nausea, stomach pain, dirrehea, the horrid sick feeling inside and out and many other issues as well. Oh and it takes away my breathing problem.... i.e. wen i have a spell and cant breathe right and have a hard time breathing, after hitting a joint, i can breathe just fine. Usually 1 to 3 hits in the morning will do me all day.... sometimes though i get really sick at night, and i'll take 1 or 2 hits too. But never around the children.... and i never drive for at least 2-3 hours.... usually i hit it before i shower and it takes me a good 3 hours to get ready due to the illness. It works wonders for me. Unfortunately, after i left hubby, i will no longer have access to it. Its the only med that helps me inside and out, the illness as a whole. Have no idea what mechanism is working the wonder, but i wish it could be singled out and a drug made that specifically targets whatever needs to be targeted (i hope that made sense)... anyways.... if i smoke too much, it makes me have anxiety.... so i never go more than 3 hits.

I can also talk and walk alot better too when i take it. Just amazing how it works for me. Pulls me out of a paralyzed attack almost immediately.

thanks

hilbiligrl