Hi I am eighteen years old, and have had cerebellar ataxia for five years or so. I do all I can to slow it down, but I notice that my efforts are not superbly helpful. I was wondering if anyone could offer their input on whether medicinal marijuana would be a valuable tool in helping me to deal with this life changing condition. Another note is that recently I have been having dizzy spells, coupled with double vision, and tingling legs.
Please tell me what you think
Stay strong
Sam
Hi Sam just wanted to say hello but have no experience of this.
Best wishes, Patsy
We have a discussion that has been going on about this on American Ataxia Networking a sister site here.
http://americanataxianetworking.ning.com/forum/topics/should-medical-marijuana-be
There migh be information there that can help, I'm not sure! But it might be worth checking out. :0)
As for dizzyness, I get dizzy sometimes when I'm tired or turn my head too fast. I either take regular naps to head it off as much as I can and I'm doing more exercises turning my head to get used to it more often. My Dr. checked also to make sure it wasn't my ears making me dizzy. But I knowtise that my eye's blur or I see double if I don't maintain my schedual and give my body more sleep. I sleep 9 hours a night and anywhere from 1 1/2 -3 hours a day also. I don't like to take the time out to nap, but it makes a big diffrence. Not sure that helps, but it helps me allot! :0)
I have to say that my opinion is DO NOT do it! I have been around many people in my past (not present) who used it regularly for 'medicinal' purposes. From what I have seen, it slows thinking and over time causes more damage than good. I grew up around it, and one would think that would make me more accepting - but in fact i am not.
I have watched good, smart people I knew end up with slower thinking, personality changes, and overall poor health because of it. It is not worth it.
Hi Sam. I have spinocellebellar ataxia and I personally have noticed an improvement since I've stopped using medicinal marijuana. Just wanted to mention that.
I take medication for my leg tingling and pain... I also rub my legs and feet when it gets bad. I haven't had much luck with the dizzy spells other than sitting down or resting whenever I start to feel it and trying not to overexert myself.
Please feel free to contact me here if you would like to discuss it further. I'm always up for talking.
Best of Luck!
Darcy
Hi
I have ca too.I think the dizzy spells when we turn our head is our eyes being slow to focus.I feeel sometimes as if i have just come off a roundabout and that is when I fall over. I found remembering to do things slowly helps but it is not easy to remember all the time.Idon't know anything about marjuana but i am so glad nothing so far has interfered with my thought processes. I am not in any pain but go dizzy when I move my head.I dread turning.
marie
I get extreme dizziness whenever I lay flat, which lasts for a few seconds and on occasions when I turn my head. My doctor says it comes from the inner ear. He says there is no direct link between the cerebellum and the inner ear but messages can be sent from one place to another due to a change in body positioning hence the sudden dizziness. I'm completely deaf in one ear so this may also be a factor.
I have heard that cannabis is good for pain and have spoken to people who have benefitted from it but I've never tried it myself. I don't get a lot of pain
Hi Sam
I managed to turn my condition around to some degree after undertaking a more intense exercise routine. I bought a passive trainer bike which pedals legs for you and at first everytime I used it it sent legs into spasms and made them shake but I stuck with it and now it no longer happens, my pain has decreased and stiffness.
I use Wii games to help with co-ordination and voluntary movements have improved a little, but the exercise has had no effect on the involuntary movements that happen at rest. For example whilst using my arms to play boxing or tennis on wii my hands will stop flexing as I have wii remote fastened to hand using an hair scrunchie and even the other hand doesn't do it whilst I'm playing the game... as soon as I stop they both start flexing and arms stiffen and relax or twitch involuntarily. In my case this is apparently from the Dystonia side of things. I've just had to learn to live with this as I don't like the effects of the drugs, as a dose strong enough to stop them would leave me like a zombie.
Kati
Hello all,
I just thought I should let you know that I have started taking marijuana on a weekly basis, and I see some very encouraging results eg:( I have been able to draw with my right hand for the first time in years, the pain in my hands are eliminated while I draw…) I will keep you guys posted on any other improvements.
Remember everyone is different and marijuana might affect some people differently than it does others.
Stay strong
Sam
I can appreciate it helps with pain but I value every brain cell as I use my mind to get round things but as you say everyone is different.Pleased to see good results with your drawing.
Hi Sam, I can tell you, where I live medical marijuana is not legal, however my doctor prescribes me marinol which is a synthetic THC. I was pretty much knocking on heavens door a year ago, losing weight, swallowing difficulty as well as no appetitive and terrible nausea. Since then I have been able to consistently attend PT daily and have added muscle weight and no longer require a wheel chair. The best advice I can give you is exercise works the best, however, without that medication being added I have no idea where I would be at this time. I am not sure if this will work for you since everyone’s body chemistry and ataxia is different. As far as the dizziness , I also have issues and in therapy I am on a very wonderful routine which are same exercises people with vestibular issues utilize and it does work well. If you have any questions feel free to contact me.
Garry
Hi Sam,
2 years ago I went with some friends. And they were smoking marijuana. So I was stupid enough to do it . Well let me tell you. The effect was awful. I passed out. I was stuck in my car for 4 hours because I could not hold my head up or walk. I was puking. Everything was spinning. I only took 2 puffs. Believe me when I say. It does not help Ataxia. I will never do that again!
Lori
Hi gary,
That's wonderful to hear. When I meet with my Neuro in November I will be sure to ask him about synthetic THC, but it must be essentially the same thing as the plant itself(or the bud), right?
Thanks
Sam
Gary gckak said:
Hi Sam, I can tell you, where I live medical marijuana is not legal, however my doctor prescribes me marinol which is a synthetic THC. I was pretty much knocking on heavens door a year ago, losing weight, swallowing difficulty as well as no appetitive and terrible nausea. Since then I have been able to consistently attend PT daily and have added muscle weight and no longer require a wheel chair. The best advice I can give you is exercise works the best, however, without that medication being added I have no idea where I would be at this time. I am not sure if this will work for you since everyone's body chemistry and ataxia is different. As far as the dizziness , I also have issues and in therapy I am on a very wonderful routine which are same exercises people with vestibular issues utilize and it does work well. If you have any questions feel free to contact me.
Garry
Lori, sorry you had such a reaction but as a medical health professional and someone diagnosed and being treated successfully using Marinol to stop and control nausea and vomiting. As I said in a previous post it can work for ataxia as I am living proof. Sometimes in a clinic setting I have used marinol as treatment for cancer patients who can not stop vomiting. THC subdues the reflex that causes vomiting in most situations. If you smoke street marijuana, there is no way of knowing what was in it or the THC levels. Some people can also be allergic or attempt to do use it as treatment for nausea while drinking alcohol in which vomiting can occur. I am sorry you had such a reaction but to say specifically it does not work for ataxia, is correct in your situation but does not mean it would not work for someone else. I am in an ataxia support group where I know of nine people, various ages that there symptoms have improved tremendously and their quality of life has increased. Having this disease is terrible and I always tell people try anything once or twice if it works , great if not, then it’s surely not for you. I have tried rilutek which is helpful and currently in trials, this worked horribly for me, however many in our group it seems to be helping them. I try not to convince people not to try a treatment that did not work for me and I think it’s best here to give your experience but to say straight out it does not work for ataxia is not really true. I hope you understand the point I am attempting to make and thank you,
Garry
Gary, I understand your point to the fullest. Your right and I am sorry. Thank you for being so kind. And it's true. I forgot about the THC levels. Then it would be safe to say. I will no longer try street marijuana. Again sorry!
Lori
I would stay away from that unless instructed by a doctor. I know my son who turns 13 today was diagnosed with Ataxia at the age of 6. the last 4 years he has been on adderall 10mg that helps him focus and slows him down enough to function. So far his ataxia is slowly progressing. Good Luck
I would stay away from that unless instructed by a doctor. I know my son who turns 13 today was diagnosed with Ataxia at the age of 6. the last 4 years he has been on adderall 10mg that helps him focus and slows him down enough to function. So far his ataxia is slowly progressing. Good Luck
It is good for pain, but some strains cause temp Ataxia. If you dont know what your taking dont, I am 65 with light Ataxia and smoke for Arthrits pain.
John
My dr signed for me.
Hi Sam
The symptoms you describe are soo familiar. I was diagnosed with SCA when I was 17 (I’m now 40). I have constant double vision, which is horrid, tho nothing can be done about it :(. The tingling legs can be eased with gabapentin (my neuro prescribed it). I was diagnosed with BPPV, a form of vertigo, a few years ago. My doctor gave my an exercise sheet (neck movements etc.) and prescribed amitryptline, which works ok at the moment!
If I had any experience with marijuana, I’d share!
Hope this helps, tho probably now!!
Roch xxxx
Hi Sam - I’m open to it, if it helps ease the pain before your sleeping.
Of course, there are downsides to consider such as overall brain functioning and your other tasks that you need to do and be mentally-acute, mental addiction (NOT physical addiction), the lung damage if smoked (vs. eaten), etc.
Ultimately only you can make that decision; however, I personally think that seeking the pros and cons from everyone including your doctor is valuable in your decision-making.