Hi, I am in my 40s' I used to smoke marijuana in my younger years and I have been diagnosed with ataxia from about five years ago, my doctor and physical therapist think it is from damage from excessive drinking. When this started it was after the recovery from a right broken hip and hip replacement. After the replacement I have never regained normal walking abilities, I need an assortment of aids, wheelchair, cane, walker, forearm crutches? I even bought a brand new four-wheeled scooter that's still in the box. I just started reading about the possibility of taking up smoking weed again to be blunt about it and I wonder if smoking it helps anyone else? I have been sober working on my second year from alcohol. Any contribution appreciated...
Ataxia: Hi, I am in my 40s' I used to smoke... - Ataxia UK
I awoke from a 10 day coma after a long distance air flight in the hospital without the use of my legs. Needless to say it was very terrifying. For weeks the doctors could not figure out why. I do have a past history of alcohol use although sober from alcohol for many years. I also have a very long history of cannabis use. The doctors ( I believe due to laziness or perhaps a financial need to be rid of me as patient) determined that past alcohol use was the cause of my ataxia. I was 54 at the time and otherwise fit before the incident. I was in shock due to the loss of my legs and needless to say not in my right mind for many months. After 11 months of rehab in a skilled nursing facility I was discharged with a walker and sent on my way. The ataxia due to alcohol and drug use stigma followed me for the next few years. I spent the next few bedridden years learning as much as I could about all the various forms and causes of ataxia, a daunting task but I had plenty of time on my hands outside of daily exercise. That is how I came to find this great support group, there is much knowledge to be gained here. After 3 years I had a fall that landed me back in the hospital.This time I had the knowledge to ask the right questions and seek the advice of an ataxia specialist at an ataxia clinic. No easy task getting admitted to an ataxia clinic in the U.S. This time I found a specialist who determined the cause of my ataxia and the loss of the use of my legs to be a blood clot that lodged at the base of my spine due to deep vein thrombosis from frequent long distance air flights. I will never regain the full use of my legs again but with constant exercise and the proper drug and vitamin diet I can at least live a somewhat independent life again. The point of this story is that due to in my opinion a very lazy neurologist from the initial hospital this unnecessary stigma followed me around for years until I received a proper diagnosis. I would like to sue the S.O.B. Neurologist for medical malpractice but that is very difficult to prove. Ataxia is a very complicated issue and most doctors don’t know much about it! It took me 3 years of constant study to gain the knowledge needed to ask the right questions and have the courage to stand up to the medical establishment. As far as cannabis use I still find it medically beneficial but in a different way now. It helps me to relax and sleep as well as my appetite and occasional nausea from the amount of pills I consume everyday. I do find it is not compatible with my daily exercise routine so I avoid it during those hours. Cannabis has been legal for many years where I reside and I hope that many other geographical regions continue to be enlightened to its medical benefits for a vast scope of ailments when properly used. The stigma with cannabis is downright barbaric! Alcohol is a different demon entirely, although a few times a year I do indulge in a little single malt but nowadays I need to be supervised when I do because of the fall risk. I am no doctor but since you had hip replacement that may be a large underlying cause of your ataxia. Many doctors will band together to avoid their common mistakes. Like any other segment of the population there are good doctors and doctors who form opinions based on ease of diagnosis rather than individual circumstances. All the best in the future and take comfort that there are others who are there for you!
Thank you for sharing your story. I was diagnosed in May 2019 with ataxia cause: unknown. I have fought with the medical field for years. I was a runner but I always had injuries. Broken legs, foot, etc. I was forever chasing the pain. I had unexplainable symptoms. I had a few TIAs and a seizure that landed me in the ER AGAIN. That was 5 years ago. I started looking through all my medical records (thicker than the King James Bible) and there it was in an MRI report: advanced cerebellum ataxia for patient’s age. 😳 yea I was pissed. I had an MRI this past Friday the 13th which has always been a lucky day for me. April 2nd I get my results. I looked into negligence on the part of the medical staff for never informing me of these results. As it was explained to me I don’t have a case I guess because I didn’t die? So for 5 years I continued seeing pain specialists. Movement specialist. Misdiagnosed for years. I had neuropathy for awhile. 🙄 once again not negligence just stupidity. I do what’s best for me. I know my life and I know the cause is head trauma. Do they listen? Do I care? No, I advocate for myself.
Like any segment of the population there are competent professionals and those who just check boxes. My struggle to get a proper diagnosis should not have been as difficult and time consuming as it was. I have spent more time in MRI machines than I can remember. At the beginning I was not a claustrophobic person and now I ask for sedation before I go in the tube. After finding my correct diagnosis it has given me much peace of mind and made it easier for me to go forward in life. All the best to you! Stay safe, happy & healthy!
Hello Cubsfan, well, that was quite a journey you have been through. I've heard of thrombosis or however but nevr knew much about it? and from flying? this is terrible. I wanted to first say I just noticed this because I have a habit of not checking my mail as I told wibbly wobbly. Maybe I need to pick your brain as you have delved into this demon (not particularly alcohol but why would a hip replacement suddenly make thae part of my brain Cerebellum I think decide to turn on me? This troubles and puzzles me for six years now and with all the wits about me I cannot beieve alcohol the culprit. You know why? Because not four months previously I had snapped my right fibula walking beside a creek and managed to hobble to get some ambulance help. Then I was laid up at my mothers home for about two months with crutches and it healed very well. Wait for it...About five months later I was trying to take a short cut to my home and climbed over a three 1/2 foot tall rock masonry wall and fell on the other side onto the hard pavement of a parking lot. I did not hit my head or anything like that just landed wrong on the right hip. So I get a botched surjury with three screws he put thriugh my femur into the broken off ball joint part. I stayed in a home for elders for about a month and a half and it wasn't healing so I got a second opinion (50+ days of costant pain) The new guy said, "you need a new hip." So I just went for it, no pain anymore after just could not regain the normalsy of walking as was before, is there not something screwy there? I don't know what to think now, Thank you...
I initially thought something fell on my head from an overhead bin during the flight and I attempted to sue the airlines. During the discovery portion of the lawsuit that was found not to be the case. Back to square 1 for me. It wasn’t until a subsequent fall and hospitalization I found the ataxia specialist who delved deeper into my incident. I had heard of DVT before but of course that was very rare and happened to other people, right? The countless hours I spent learning about all the different forms and causes of ataxia is truly mind boggling. In my previous life I could tackle complex subjects but my research into ataxia was overwhelming! This group has been a good source of knowledge and as I’m sure you’ve seen there are many different forms represented here. YouTube also has some interesting information as well as some Universities, I believe Stanford and some Universities in Florida and Maryland. I’ve found a common thread in treatment to be vitamin b-12 b-1 folic acid baclofen I take 20mg 4X/day. I have found gabapenten to be very ineffective and costly. I take various forms of codeine 4X/day for pain which is constant and I also take acetyl L carnatine 1000mgs/day which can be found at most gyms and health food stores. And of course as much exercise as I can tolerate. In my previous life I was very athletic and suffered minor broken bones and injuries over the years but nothing like what you have described. I can’t begin to describe how angry I was at the due to alcohol and marijuana diagnosis from my original neurologist! What an easy way out for their laziness and I believe financial concern over my lengthy initial hospitalization! There are good doctors and doctors who just go through school and collect their paychecks and enjoy their fancy cars and country club status and their are doctors who take their profession more seriously and really care about their patients. All the best to you! Stay safe, happy & healthy and keep up the good fight until you are satisfied and attain the peace you deserve to battle this lifelong illness!
I understand your frustration with doctors, the first idiot should have given me a new hip in the first place, when I arrived at the hospial in serious pain they knocked me out and woke up with the three dumb screws in my femur? I call it botched but you cannot win. I really hope the best for you also Cubsfan, carry on...
Of course cannabis is illegal in the UK as it is in France where I live, so this is not a recommendation but I will share my experience with you.
For the last few years I have been making cannabis butter, which I then make biscuits with.
I eat the biscuits once or twice a week before going to bed to decontract my muscles. I have quite a lot of spasticity. I'm really not looking for the high effect, which is why I take it before going to sleep.
I also make a very low dosage biscuit which I take out with me to prevent migraines. When I get tired my neck contracts which then leads to a migraine. This enables me to go out with family and friends. The dosage is so low that I don't get high.
I have allergies to paracetamol, antiinflammatories, and tramadol now makes me sick so really there isn't anything else to relieve this spasticity/migraine unless I opt for a stronger medication that I must take every day. As my body doesn't seem to like chemicals anymore I'm trying to delay taking the stronger medication.
All my drs and specialists here in France are aware of what I'm doing and say it helps my ataxia, but they cannot recommend me taking it for legal reasons. It is even written on my medical records.
I have a genetic type of SCA, as of yet I do not know which gene.
If you are taking any other medications then this should be discussed with your Dr first.
This is not a recommendation, I'm just sharing my experience with you. I don't smoke the cannabis as the effect is for just a short time to relieve my spasticity/migraine I want something that helps over a longer time period.
Hello, wibbly wobbly, nice name, thank you for the response, I've never been on a site like this, have seen them although, USA here. I looked up your condition and it says rare and I have seen others so young I guess like you in media using walking aids or what not, does your profile say you're having vision problems also? I honestly thought this was a srange thing to get from drinking, I should have bounced back from the hip as did from having a snapped fibula only a few months before? It's very strange as I did not have traits of ataxia previously, very agile person? I have no idea of whatever these oils and vaping things are,
I'm not interested in vaping although I smoke cigarettes and when I was a young head banger smoking weed was a daily thing. It is legal here and there is a vending establishment in my area. I do take gabapentin and Baclofen + vitamins. I guess I'll just go down there and buy some, I know how to adjust my tolerance, it takes a bit. I initially stopped smoking it because it just made me want to nap all the time, maybe at bed time. Thank you for your response, wibbly wobbly, I have joined the club;)...
I believe that if you now stop drinking alcohol then your ataxia will stop progressing.
This is probably a question worth posting separately on this site.
There are others using this site who also have Ataxia due to alcohol.
Just as a matter of interest I've recently discovered that drinking alcohol is now making me feel quite ill. Apart from obviously coordination being much worse, if I now drink more than a couple of glasses of wine then I feel quite terrible :(. Shame cos I really did enjoy a few drinks with friends.
I apologize wibbly wobbly, I have a habit of not checking my mail? I rather enjoy alcohol but it has taken it's toll I suppose, thank you for seeing me to some other help here. I still haven't tried the weed yet and likely wait, it's not really important, I own my own home as a bachelor but presently am at my aging mothers home to sort of help each other out she's almost 72 and drinks every day but we simply stay on our comfortablr sides of her home Lol, we get along very well but she is in my feeling not much time left and I am sole proprietor Chat you later...
Can you tell me what Tramadol does wibbly wobbly? or any other meds for whatever is happening in my area, my doc is a woman I'm older than and she's okay but she's sketchy with meds or thinks I'm deppresed?