I am a 21 year old girl taking medical marijuana for my Tourette Syndrome, AMA!

How hard it is to hold a tic? How does it feel when you are about to have one?

Reaally hard, I can hold them back for about 20 seconds but it will just build up and make it 10x worse. It's like this unpleasant urge I get under my skin that feels like a weird tingly buzzy sorta feeling. It's super hard to explain, but you know when you're having a staring contest with someone and your eyes start start screaming at you to close them and blink? It feels almost exactly like that, but all over my body, all the time haha

I feel like that's pretty much the same thing as going through opiate withdrawal. When you get the muscle aches you can't sit still. You can try and sit still but that same feeling tingles through your body making you move or stretch. Happens constantly. To the point I couldn't sleep at all.

How do you find it affects your sleeping?

Yeah exactly! The sleeping is the worst part about it, I can live with the tics and all the rest during the day but when it effects my sleep it destroys everything. I couldn't function like a normal person and even had to be home schooled for my final year of high school because I couldn't get out of bed. I would tic all through the night so I could never fall into a deep sleep and would always be half awake. It was horrible and that's the side of tourettes no one really knows or thinks about

Piggyback: Do the tics happen when you're unconscious, or are they just so frequent that it's very hard to fall asleep?

They happen constantly when i'm unconscious as well

Like a hiccup?

I've heard it's more like a sneeze. You can hold a sneeze back a bit, but normally not a hiccup.

Storycore on NPR this morning explained it like holding back a sneeze.

Does it have the same kind of pleasant feeling after like a sneeze does?

Yeah it has a slight feeling of satisfaction once you complete the tic except the problem is it comes back 2 seconds later and you have to do it again and again and again

Do you happen to clutch, tighten, or cramp up your abdomen/stomach for long periods of time?

This one is a real pain in the ass. One of my tics basically involves squeezing my ab muscles and if I'm having a particularly heavy day of them I end up being sore after a while.

I have this exact tic also! It's horrible especially after i've eaten because it will upset my stomach and make me feel sick sometimes. It does get sore and cramp up as well.

Do you feel you've had any negative impacts from medicating from Marijuana? Do you think you could live without it now?

I haven't experienced a single negative impact since the day I started using it, it's been nothing but positive! There's no way I could live without it now. I would never want to go back to the way it was before. Without it I couldn't sleep, I couldn't work, go to school, drive, at one point it got so bad I could barely even eat or drink without knocking everything over in the process. Now I can do all that with no problem and people I meet daily would never even guess I have Tourettes at all. I passed my driving test without a single minor strike whereas before my tics were a serious safety hazard. My friends and family can't believe the change it's had on me, it's something we never thought was possible and I wish I knew about it much sooner!

Without it I couldn't ...drive.

...I passed my driving test without a single minor strike whereas before my tics were a serious safety hazard.

You're allowed to drive while using medical marijuana?

I take it at night before I go to bed so when I wake up the next day I'm completely sober but its CBD effects are still preventing my tics from coming through, so its safe for me to drive :) If I was caught with a roadside drug test though i'd lose my license and probably get a criminal record. I just have to be extremely careful.

As far as I know the oil version doesn't contain significant amounts of THC. Is this correct?

Edit: OP stated in a another comment that the oil capsules do indeed contain plenty of THC.

Well mine does because the THC helps me and I need it, but you can get oil without THC in it as well it just depends on whats best for each different person

You probably shouldn't be driving high... Unless they've removed the compound that causes the high in your medication but from your comment concerning dosage of CBD and THC that seems not to be the case.

I'm glad it's making your life better but driving under the influence is dangerous to not only yourself but others....

Don't worry I would never drive under the influence of anything. That would defeat the purpose of my reason for taking it in the first place haha

I take it at night before I go to bed so when I wake up the next day I'm completely sober but its CBD effects are still preventing my tics from coming through, so its safe for me to drive

Cool! My brother suffers from Tourette's as well, although not as severe as yours (mostly twitching but definitely some mental impact as well). Would love to learn more so had a few questions:

1. Was this recommended by a doctor, or where did you hear about this? Is this a common treatment (are there studies on using marijuana for tics)?

2. Do you feel a significant high/buzz? Are you legally allowed to drive?

3. Have you ever (intentionally or accidentally) skipped a 'dose' and does everything revert when you do? Do you think this will be a lifelong treatment?

4. Does this treat more of the physical symptoms (tics) or does it also affect you mentally (anxiety etc)?

Thanks for doing this!

Hi there thanks for your questions!

1. It's a bit complicated over here in aussieland at the moment. It's still illegal and the big pharmacies are doing all they can to stop it from becoming legal because they love to sell pills and make profit from people like me. Those pills cause side effects that you need to take MORE pills for, which earns them more money, so on and so forth. So because of that doctors and psychiatrists are in denial about it working and aren't allowed to discuss it in a professional setting. After years of horrible side effects and bad reactions to prescriptions medications I just got sick of it and me and my family sought out the cannabis treatment ourselves. I can't give too much information on where or how I got the medicinal cannabis oil but there are people out there who are making the medicinal strains purely with the intention to help people who need it. There aren't many 'official' Australian studies about cannabis treating Tourettes specifically but that's only because the government of health never allows anyone to make them, and they turn a blind eye every time someone tries to say it works. But there is OVERWHELMING proof of success. I am living proof, and just read all the comments in this thread, theres absolutely no doubt that it helps with Tourettes!

2. It's controversial but i'm not going to lie about what helps me. I do feel a high/buzz whenever I have to vaporise/smoke it, and sometimes I do with the oil depending on what type it is. But I don't take it during the day, I only take it once a night to get me to sleep, so when I wake up i'm not high at all. The traces of cannabis are still detectable through drug tests but i'm completely sober during the day. I'm not legally allowed to drive and if I was caught i'd lose my license, but it's actually safer for me to drive now than it was without taking cannabis every night because my tics were a serious safety hazard.

3. Yeah I have accidentally skipped it a few times, and i've even travelled overseas for long periods of time where I couldn't take it with me. There's 2 different parts that I need it for: sleeping and tics. I have to take it every night to sleep and if I skip it I wont get any sleep. (When i'm overseas I have to rely on valium every night.) With tics, one single night without taking it wouldn't be enough to revert its effects. After about a week or so of not taking the cannabis things start reverting back to normal and the tics start coming back. So I do think this will be a lifelong treatment but when it becomes legal it will make things a lot easier.

4. Sorta just answered this in the previous question, it helps me in both ways! The reason I can't sleep without it is because my brain goes around in circles and sets of my anxiety to the extreme. When i'm trying to sleep normally I get stuck in this shallow, dream like state where i'm still half awake, and it will play in a loop about something i'm really anxious about and wont stop for the entire night. It's like torture and I've never really been able to find a good way to describe it... It's like being stuck in a nightmare that you cant get out of, thats replaying itself over and over and over again. So the cannabis helps me quiet my mind down and stop that from happening so I can have a sound sleep through the entire night. Because of Tourettes I also have an extremely repetitive thought pattern so mentally it helps break that cycle, and its also helped with my depression too, so it definitely benefits me both physically and mentally!

Do you ever get high from marijuana anymore? I've heard miracle stories of certain doses of it helping children with life threatening seizures. Does it completely negate your Tourette's tics?

Yeah I sometimes still do get high from it. Not all the time because thats not the point of it to me. The high is what helps me the most at night because it stops my brain from racing but there are some medicinal oil strains that have the high taken out of it that i've been taking too. It all just depends on your personal needs, I don't think i've developed much of a tolerance for it yet as far as I know. At first the oil I was having did successfully get rid of my Tourettes but it changes every time I go back to refill so right now its not completely gone, I still have some tics here and there but its still a massive improvement so i'm happy. Would love to work on finding that perfect formula once it becomes legal tho! And yeah it without a doubt helps with epilepsy, i've seen people who's kids used to have 600+ seizures a day go down to 0 for months or years at a time because of it... It's crazy

Do you use marijuana daily? Like when you get home at the end of the day, or do you ingest it (in whatever way) at the start of the day? What's the rough dosage that keeps your symptoms under control?

Edit - Followup: do you take this concurrently with other medicine or do you only medicate with marijuana? How do you feel about people using the drug recreationally?

Yep I use it every night before I go to bed, I started off taking 2mls of it in oil form with an eyedropper and that helped me a lot, but because its illegal here it's hard to keep it consistent and every time I need to restock it's always different. At the moment i'm not entirely sure about the science behind it all but I have capsules with cannabis oil in them that I take daily, and I vaporise most nights as well just to be sure. Usually a couple of 'cones' worth or filling the chamber once will be enough but when I have a good oil formula with high CBD and THC potency I don't even need to do that. I prefer to take the oil if it works because I don't want it to effect my lungs in any way. I do take official prescription medications at the same time, but only because I've been on them for 14+ years and have horrific withdrawals if I don't have them 😩
Personally I don't really care about people who use it recreationally, I mean it's harmless and far less dangerous than alcohol so I have nothing against it as long as its responsible and balanced. And its beneficial to so many different illnesses that I wouldn't be surprised if it helps everyone in some way or another. I only hate when recreational users do stupid things that spreads stigma and sets the medicinal movement back, like getting high and crashing the car while driving or something like that.

Usually a couple of cones will be enough

When you say a couple of cones do you mean a couple of single hits from a pipe, a couple of full bowls from a pipe, or a couple of joints?

Cone is a bong - comes from the cone shape of the little piece you put the weed in at the end of the stem. Usually refers to the entire amount you can fit in one.

Yeah that's what I was going for with the word pipe. Dry or wet, they tend to have the cone shaped piece. But I've gathered that there's some regional variation in how people smoke out of bongs. Sometimes it's a large, full bowl that's good for several hits and sometimes it's a small bowl that's taken in one hit. I was curious if a couple of cones meant two hits or like 10-15.

What I was referring to was just one of those small cone pieces on the end of the stem you can take in one hit, to help give a measurement to how much I use. That's all I need, no more than that haha

You take it via your eyes with an eyedropper?

Hahahahaha no I just use the eyedropper to put drops between my gums, it absorbs into your bloodstream faster that way :P

How do you get your supply if it's illegal? I'd like to use it more often for my severe anxiety/depression but I have trouble finding reputable sources in my area.

I have a specific contact that makes medicinal strains and gives it out for free to sick children with cancer/epilepsy/etc, and I was super lucky to even get anything from them. They have a wait list of over 10,000 people but I think they wanted more Tourettes representation. Sorry I couldn't be of more help there, I also just get the normal stuff that goes around from friends and whatnot. It's illegal but everyone knows someone who can get it.

You've given a good description of your symptom severity (BTW, I imagine a lot of people will want to know this; you might consider putting an abbreviated version in the top post); how much does the cannabis help? Do you need to be truly stoned for it to be effective or does a light buzz do the trick?

I answered a bit about how much its helped me in another question but it's honestly helped me so much that I still can't believe it. To help give a bit of background and perspective, when I was 11 years old my biggest wish in life was to undergo deep brain stimulation surgery, which is where they insert wires in the middle of the brain and run it down your neck into a neurostimulator pacemaker device implanted in the chest. It sends electrical impulses to the brain to stop the tics. Obviously that's a super risky and intrusive procedure but I didn't even care because I just wanted it to stop. Fast forward to today, the medical cannabis I take does all that and more, is completely safe and has had 0 negative side effects to date!

For my case of Tourettes, i've found out that a high content of CBD and THC is best, because the CBD helps mellow me out and stop the tics and the high THC keeps me asleep. It helps quiet my mind down and turn off. I don't do it to get high and sometimes depending on the oil I don't even need to be but it needs to have just enough strength to hold out through the entire night. Thanks for the question!

I use the strain Jack Herre for anxiety and Girl Scout cookies for help with PTSD. What strains do you find work best for you ?

At the moment its been kinda hard to come by so I take what I can get, I haven't been able to experiment with different strains and such yet but i'm hoping to in the future to find the perfect formula for tourettes to make an oil out of.

So I'm of the belief that if I knew someone with tourettes, that I would rip the piss out (friendly insulting) of them just like anyone else I know. Doing anything else can be viewed as an accidental insult. In the same way I imagine people in Wheelchairs get fed up of being treated differently.

Question is, how do you view yourself in that regard? Would you appreciate friends having a laugh at your expense just as they would have a laugh at anyone elses expense amongst friends?

Yeah i'm the same, I like when people laugh with me about it because the reality is that it's actually pretty funny sometimes lol and i'd rather find the humour in it than be offended by every little thing and make people around me feel like they're stepping on egg shells. I just wanna be treated normally like anyone else, unless the joke is just in plain poor taste then I'm fine with it. I'm super laid back about it all and I like when people can be comfortable bringing it up with me for any reason even if its just for a bit of friendly teasing

What was the most awkward moment you had a tic?

I have this weird one where I have to kind of rub my neck on my shoulder to crack it, and sometimes the skin rubs together in a way where it makes a little squeaky fart noise. Thats always super awkward and hard to explain. I also have one where I have to push all the air out of my nose so sometimes i'm having a deep and meaningful conversation with someone and they mistakenly think i'm laughing or scoffing at them!

Do yo ever...SHITFUCKASSFUCKSHIT...suffer any symptoms?

Haha yes, I've been at war with my tics for over 15 years. Some come and go, some i've had my entire life. It first stared out with excessive blinking, twitching my nose, and cracking my wrists, but now I have so many that I cant even count them all. I have to tense all the different muscles in my body and crack all the bones in my back, neck, jaw, wrists, fingers and ankles about every 5 seconds. I also have this tic where I have to push all the air out of my lungs.

All the tics I just mentioned are physical and are called 'motor' tics, I've had some vocal ones in the past such as squeaking and sniffing. Fun fact - The infamous swearing tic is actually a symptom called 'Coprolalia' and only around 10% of people with Tourettes have it! Lucky for me I've never had that tic....... by day. I swear like a sailor in my sleep. :P

Other symptoms of tourettes I have is hyperactive repetitive thought patterns which impacts my sleep severely. My brain generates a lot of excess energy that regular people don't have which is why my body tries to release it with tics. I don't come across as hyperactive but if I don't take my medication I can stay up for over 4 days without a minute of sleep. I also have enlarged hippocampus and amygdala parts of the brain which controls memory and emotion, so because of that I have heightened emotions and amazing long term memory.

Hope that answers your question!

How old are you?

191,161 hours 😁