Chiari Malformation Community
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1159737 tn?1286520857

Who uses/has uses Medical Marijuana for Chiari Pain?

I don't want to offend anyone here or anything I was just wondering. I myself don't take narcotic pain pills because I used to love them too much LOL.  Between my headaches getting worse, my back pain due to my scoliosis getting worse, I am at the end of my rope and seriously considering it. (MMJ) Question is, if you use MMJ for your Chiari headaches, does it help? I'm asking because so many people talk of how migraine medicines don't work for these types of headaches and I don't want to put the money out for nothing.  I know, my back is reason enough but I am  just wondering if it would help with my head too. TIA for any comments!
34 Responses
1144229 tn?1293440682
I am interested to hear any reply's to this thread.........

I figure anything that helps that doesn't hurt the patient should be maid available......
1132562 tn?1284511635
I would like to share with you on this. I used to smoke MJ  quite frequently mostly for the nausea and because I couldn't fall asleep because my head hurt so much. I am not a pot head by any means but sometimes I felt I needed it to be sane!!!! I told  my NL before and he said "I am going to pretend I didn't hear anything". Personally I think it can help more than any RX meds. I have not smoked for awhile now because I had surgery and want to feel the full effect or lack of what surgery has done.
Good luck!!!
1179332 tn?1297482590
I'm for anything that helps...unfortunately for me, I react very badly and am a paranoid fool. I learned 15 years ago that it was not for me... However, if it works for someone else..more power to you!! It be interesting to hear if it does.
1175033 tn?1492204828
Let me start by warning you that smoking is bad any way you go about it. But, there are vaporizers that allow you to take in the beneficial properties, with out the carcinogens. The pharmaceutical industry is working on a inhaler type device for safe use of THC.  Coughing is also not advised for Chairi patients as it is a valsalva manover, so dont just go and smoke, it can make your condition worse and even make your headache worse. It can also cause dependency like many other things that  help with pain.

Other than that It helps tremendously!!! I have my medical marijuana prescription, but It isn't for everybody. It isnt easy to obtain, you cant just go get it from the pharmacy. It is suggested that you grow it for your self so that you endangering yourself and supporting the black market. This is almost impossible without help, chiari patients shouldnt lift more than a gallon of water which is hard if you have to keep your plants alive.  
It takes the edge off the pain, but doesnt take it away. It is mostly beneficial if you have stomach problems like IBS and chronic nausea. I get severe menses that make me sick, and it is VERY helpful with this...  Seeing as you are in Colorado you do have a lot of resources to find out more. Breckenrigde CO is the first state in the US to completely decriminalize it to anyone over the age of 21. This law was put into effect January 1 2010.
You have to really put some thought into this, as it is not a typical treatment and some doctors will not agree that it has any medical benefits.

I had not said anything about my MM use on here because I was worried I would be judged. But I shouldn't hold back, people need to be educated so that they dont fear what they simply dont understand. I would only hope that people accept me for who I am not what  I do.  Stacey
1132562 tn?1284511635
Kudos Stacey!!
1159737 tn?1286520857
I appreciate your responses - I too have horrible periods which - for whatever dang reason, I get twice a month. It also causes me to get migraines on top of my chiari headaches so - yeah - imagine that one. I have not taken anything other than Tylenol for my pain, because 1) I am scared of anything out there anymore and 2) I can't take narcotic pain pills. Well I could but I cannot imagine going down that road again. But when you are taking in excess of 3000mg of acetaminophen A DAY - well, my liver is not going to hold out. I know there is motrin, but for whatever reason it makes my head hurt worse and after one day on it my stomach is upset. So I can't take that either.

Spacey - Thank you for your post. I really do commend you for speaking up - and helping someone else.
1175033 tn?1492204828
I feel for you. Couldnt imagine that twice a month with the migraine (which I also to get). That is hard on you to take that much Tylenol every day, the mmj would benefit you, but ask your doctor about Marinol (not sure if im spelling it right), a synthetic pill form so that you dont have to smoke, if your doc is open minded. It isnt quite the same but, its worth a try.  I think that It helps me put the pain in the back of my mind, sometimes  it breaks through when it its intense. But the dull achey pains that are constant are eased enough to not think about as much.  
1441486 tn?1285327496
I've had Chiari and migraines since I was 6 years old. I'm now 30. Now that I'm older and look back, it was rare that I had any headaches in my later teen years (smoking days). But now for the last 2 years or so I've had a constant headache. I've tried narcotic pain relievers (yeah right) and muscle relaxers with nothing more than taking the edge off. Recently I smoked a small dose of marijuana and realized most of pain was gone. This lasted 2 or 3 days. Upon the return of the pain I decided to smoke again. Again I got the relief I was seeking. I've repeated this a few times over, each time allowing it to wear off. The relief last a day to a day and a half (I guess depending on the THC level). Now I'm seriously considering moving to a state that allows MM for this relief.
1063386 tn?1287882169
I have seen merinol used but it was only prescribed for appitite enhancement on Vance patients. (at least that is the only ones I have ever administered it to).  

I live in Ohio and work for hospice and I personally have never seen MMJ given. However I had cancer patients that were closet smokers and they were happy and seemed pain free and for the most part were on less pain mess than others.

I can not legally promote it but i could close my eyes to it.

I wouldn't expect a doc to agree to this however maybe a better aproach would be to ask what it could hurt?  

And as for the heavy periods. Mine have been getting worse progressivly.  I am wondering of it is hormone levels being out of wack from the chiari cAusing it. I am 31 and fear I am starting menopause or something.  

Another thing to consider is estrogen supplements.    I have seen it work on brain cancer patients. But it is completly off lable and barely researched. And I forget if it's manitol??? But there is a med used to decrease csf in patients with hydrocyphalus and I am curious if that would work with chiari patients too

Anyways sorry for the ramble hope u feel better and by any means as long as u are not going to get arrested,loose your job, or anything like that a trial run wouldn't hurt.  Just don't do it I large amounts small dose would give you an idea without side effects

Hope u feel better
620923 tn?1452919248

U mentioned the heavy monthly....well I too had that..went to GYN after GYN and told it was intermittent bleeding...for yrs!!Neway at 36 I was told I was in the early stages of menopause.....WTH?....what happened to the intermittent bit,,,,,,they said no, that it was deff menopause...by the time I was 40 I was done....my DD was just beginning hers at this time.

The issue I had was no Dr would even consider there was a reason for this....once I was dx'd with Hashimotos I was told it is a very good possibility that is the reason for the early onset.

Just something for u to look into

1063386 tn?1287882169
Thank you Selma.   I have always suspected inhab thyroid issues and over the past year it has gotten worse.    I have gained so much weight and I know I can't be active like I used to but my diet is a decent one and wouldn't warrent this gain.  Not to mention I am always cold and I now have chin hair that is horrible and embarresing   But my tsh levels were normal so the docs think I again am crazy and making crap up.  
Avatar universal
This is priceless.  I have been in so much pain recently I have teasingly told several family members and friends I had just decided to give up and start smoking MMJ.  I have never smoked it nor a cigarette in my life, so you can imagine the laughs I got from them.  Then, today I see this post.  Thanks for posting this...isn't it funny how a lot of Chiari patients think alike?  WOW.
620923 tn?1452919248
I also gained a lot of weight in a short time.. with no changes to diet or activity...so if it was all a constant, so should my weight?....

TSH will appear normal if that is all u r looking at...a autoimmune thyroid issue needs additional testing ....with TSH u also need FreeT3, FreeT4 and TPO antibodies.....

I also had a ultra sound done of my thyroid after having one done of my carotid arteries...and something was noticed...with Hashimoto's u also have nodules on ur thyroid.

U r not crazy....

Avatar universal
not against mj but you should know that coughing is very bad for people with sm due to chiari as it makes the condition worse ,so if it helps you may want to think about injesting it or making tea etc.smoking anything is never healthy, so don't throw gas on fire! just somthing to think about.maddmark.
Avatar universal
I used to smoke back in my younger days. And off the subject very quick....I also suffer with endometrosis and it does help....I actually read that queen Elizabeth used it for bad cramps....anyways I was desparate too and tried it for chiari pain, it did help with the pain....but in turn sometimes it increased the pressure in my head, cant win with this disease!! I would rather have the pain than the pressure in my head and try to medicate the pain with clonzapam and vicoden seems to ease it. But whatever works for you to ease this pain!!!
1063386 tn?1287882169
This is soooo ironic to see this post up again.  I am still laughing

I was seriously just talking to my friend about how if they would legallize it I would try it.  I am desperte and think it would be so much less addicting and harmful than the vicodin I am constantly popping for minimal relief.    

I am not a drug user but hey. I smoke cigarette what's the difference if it helps and the government might just be able to get out of debt with all the tax revenue they bring in from it not to mention the money they save from the task forces to stop it.  

Anyways. Just irony that as usual with this group some one is always on the same thought process as me
1372734 tn?1309953837
I say if it works go for it, what the hell after all the constant battles we go through to be heard,believed and treated I think we deserve a little relief.

I myself at some point or another have thought I am going to give it a go anything to relieve the pain.  But have resisted so far as I am scared that it will make my cofusion/cog fog heads even worse.

I feel spaced out without it so heavens only knows how I would be on it, wow even cocodomal space me out.

Niki x x
763858 tn?1234815337
I'm not sure if you're still around...but just wanted to say, that after reading your post just now...I JUST now realized that "maybe" smoking MMJ has had something to do with minimizing the frequency & severity of mine as well...over the past 4 yrs.  When all my neuro symptoms started...& my health "fell off a cliff" in the spring of '07...I started seeking out Pain Management (as PAIN levels & Migraines were off the chart!).  So...after finding out that it would be almost 6 months before I could get in a local Pain Management Dr...patients in my MS & Fibro forums kept suggesting MMJ.  I decided to go for it!  I could NOT believe how much it helped me out (neither could my husband)...in more that one way!  It helps with PAIN/Headaches, spasticity, nausea, depressions, tremors, etc...

However,  I had a problem with "spiritual" issues...wondering if it was truly a "sin" (as we've been raised to believe)...but then after praying about it for some time...I found peace in my spirit. After all...it was GOD Himself...who created MMJ...NOT the medical/pharmaceutical industry!!  Us Native Americans have been using it for good medicine for centuries!  

BTW...did y'all know that in the earliest part of last century...that our government actually PAID farmers to grow it, because it was such a profitably crop (& used in tonics & tinctures)...while at that same time period...ALCOHOL was ILLEGAL??   I believe it should STILL be this way...IMHO!   Alcohol has killed more people & broken up more homes than any other drug on the planet!   BTW...There's a large prison in Australia (can't remember which one) that MANDATES that their inmates smoke MJ 3 times a day. They have NEVER had any murders, fights, or riots in that prison, since they implemented that rule! THAT speaks for itself!!

Besides...it's some of the best medicine I have found for Fibro. I gave it up for awhile (had to...urine tested) when I started seeing my Pain Management Dr.  Tried the Big Pharma gammet for 2+ yrs!  NO MORE DAMAGING MY BODY!!!  I prefer sticking to Mother Nature, Thank You!  ;)  

BTW...You just have to figure out the right "moderation dose" every 1-3 hours...depending on the strength & strain...as different "strains" can have different effects!!  Also...as someone mentioned...a vaporizer is the way to go!  You can also make some dynamite cookies, brownies, & just about anything your mind can cook up, with it!  Sure wish it was legal in ALL US States though!!!  But hey...JUST found out tonight that it is up for vote again here in OK!  I also heard that all the 'pre-survey polls" are saying that it's gonna pass this time!  Having my fingers crossed & saying my prayers!!   May not be for everyone...but boy does it ever help me!!!  {{hugs}}   ;)
Avatar universal
I'm not going to confirm that I have tried it since it's illegal in my state to use it medicinally, but if I had tried it, let's just say it does help. You don't do it like a pothead does - i.e, if you smoke medicinally you are not smoking a whole joint or doing bong hits. It's about taking one or two inhales, not about getting a big buzz or getting stoned. It honestly affects your mental state less than a glass of wine if you are talking small quantities at a time, but (I hear) it's very helpful to people in chronic pain, including chiari patients.
Avatar universal
Can I just say that I am crying right now. I have not had insurance for over a year. No pain meds and even when I was taking them I was so sick from them and waking up with what I call the "Pharm Hang" my kids brought it to me and said they couldn't stand to see me in this pain. This is the best thing that I could have done. I feel so much better and I can sleep and I can keep a train of thought because I'm not in pain. My partner is just as big a supporter, she doesn't smoke, but she feels that it is a better way to deal with the pain then all the pills. I would get really mad and just not ok the next day after taking the meds. So thank you all sooo much.
Avatar universal
congrats on the discovery. it's so much better than taking tons of pills with horrible side effects.
1823499 tn?1370093889
I to have been thinking of theMMJ for about 2weeks now. Only im afraid I will get paranoid. But if im smoking it legally, then theres no reason to get paranoid, right. I too have been popping vic like candy and it doesnt really help. And I dont want to kill my liver. My main concern is what about work? as im sure my workplace would not accept?!
596605 tn?1369950227
As a patient with chronic spinal headaches, I've found that a steady but small amount of the edible version of MMJ does help me. And yes my NL knows. And no coughing this way.

Specifically it makes it so that I do not need to take as much dilaudid (my break-through pain med). The opiates plug me up, and then I need to take more laxatives and it is a vicous cycle. Being plugged up is not good for my csf pressure and my history of csf leaks so this is something that I have to address, period.

I am not a chiari patient tho, and  have issues with how my skull is formed which is why I am here as there is no other group for me. Anyways my experience on this issue.

Avatar universal
Hi Spaceystac,

If you get this (given we are now in 2013 lol), by Rx, do you mean the synthetic pill form? I recently read on a non-Chiari related forum (researched MMJ) that there is a purified form avoiding carcinogens... I may be having a blonde moment, I mean sounds too good to be true and I am by no means scientifically trained, but the thought of synthetic pill = side effects in my head.

Thanks :)
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