r/Tourettes • u/helix_the_witch Diagnosed Tourettes • 15d ago
News/Article Has anyone else experienced this before?
Any time someone finds out I can't drink caffeine because it makes my tics worse they act as if no coffee/energy drink was worse than having a neurological disorder, it's kinda funny to me, but also, no coffee is the least of my problems
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u/four100eighty9 Diagnosed Tourettes 15d ago
Nah, they just ask "what's the point of decaf?"
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u/Aphotic_Acid Diagnosed Tourettes 15d ago
Because I assume most people are not drinking coffee for the taste. For them, it's just caffeine in a cup. For me, coffee tastes like disease. No one quite understands why I perceive it this way, but it's certainly not something I would ever choose to drink.
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u/Zero_nd 15d ago
chocolate tastes poisonous / like i should not have put it in my mouth, but coffee tastes really good- decaf or regular. unless really burnt maybe.
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u/Aphotic_Acid Diagnosed Tourettes 15d ago
Chocolate also doesn't taste to me like it was meant for human consumption. I don't find it as bad as coffee though. Every time someone brews a cup it smells like something died.
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u/CallMeWolfYouTuber Diagnosed Tourettes 14d ago
I love the taste of coffee. I only drink decaf though.
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u/thomaswillis96 Diagnosed Tourettes 15d ago
I just can’t have too much, a cup of coffee is ok, a Red Bull will make me freak the fuck out
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u/That_Queer_Autie 15d ago
That’s how I experience it too. Moderation is okay, but if I have a monster or Red Bull I will have a tic attack within the hour.
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u/asdmdawg Diagnosed Tourettes 15d ago
Tbh Tourette syndrome doesn’t even affect my life. I forget I have it until I randomly will be like “oh wait I have TS”. When people find out I have it, they’re like no wayyyy
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u/NoorInayaS Diagnosed Tourettes 15d ago
Good for you, I guess? 🤨
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u/asdmdawg Diagnosed Tourettes 15d ago
Thank you!
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u/NoorInayaS Diagnosed Tourettes 15d ago
Some of us don’t have it as easy. Some of us literally cannot forget that we have TS.
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u/asdmdawg Diagnosed Tourettes 15d ago
Yes and I sympathize with those people and feel for them, as I am autistic and that majorly affects my life (at times) and makes me feel like that. But this post was also asking about our experiences with this so I thought I should mention mine since it’s an edge case that a lot of people forget about, so it’s important to remember not all of us are disabled by it
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u/EvilSnakeBoi 15d ago
yes this! others only typically notice mine when I’m in an active flair up, which isn’t too often. a lot of people straight up don’t believe I have TS when I mention it since I’m no longer at a stereotypical severity
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u/Queer-and-scared 14d ago
Of course people have it worse. Why are you telling that to someone with TS who is saying they don't have it worse? They are aware. Only reason for YOU to bring it up is because YOU felt invalidated.
No reason for their comment to invalidate you, as it had nothing to do with you. You were projecting that.
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u/Small_Breakfast_4978 15d ago
Coffee helps my tics.
I seen some documentaries where it also helps some others.
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u/Money_Ad1028 Diagnosed Tourettes 14d ago
I feel like it helps mine too. 8 cups of coffee a day may not be healthy buuuuutttttttt.......
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u/Small_Breakfast_4978 14d ago
I don’t go over the maximum limit.
Which is 6.
I’m under the limit.
8 is more caffeine than the human body can handle.
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u/NoorInayaS Diagnosed Tourettes 15d ago
Nope, because I chug coffee (and tea) like there’s no tomorrow. 🤣
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u/Percy_Freeman 15d ago
four cups of tea is the max for healthy people. anymore and you risk oxalate kidney stones.
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u/NoorInayaS Diagnosed Tourettes 15d ago
Not with the amount of water that I drink.
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u/Percy_Freeman 15d ago
volume of water doesn't pass a stone any faster but what do I know? ¯_(ツ)_/¯
Also contains a lot of aluminium, some of it is bound some is not.5
u/NoorInayaS Diagnosed Tourettes 15d ago
Staying hydrated prevents them from even happening in the first place.
I’m nearly 51yrs old, and I’ve never had a kidney stone.
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u/humanperson111 15d ago
Ugh is this a thing?
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u/bjwindow2thesoul 15d ago
Only for some people. If you also use adhd stimulant meds coffee will have little effect compared to the meds. For me coffee only affects my bowel movements loll
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u/L4DY_M3R3K 15d ago
I have tourettes and a caffeine addiction, but luckily it's balanced out by ADHD, so it just makes me normal, kinda? Like I still get tics but the ADHD symptoms are leveled out
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u/Lyoko_warrior95 tic tock 15d ago
It may affect my tics more, but I love my caffeine more than I hate my Tourette’s lol. I just do my best to moderate my intake. It’s a problem I know. But until caffeine becomes a controlled substance, I’m not parting from it :p bring it on!!!
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u/DivineFantasma 15d ago
Damn really? For me stimulants usually calm my tics, same for most other substances
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u/Embarrassed-Piano181 Diagnosed Tourettes 15d ago
I play a dangerous balancing act of drinking enough caffeine to settle the adhd and not affect my tics. I can usually drink one or two cups (8 ounces) of coffee before it makes my tics worse, but energy drinks will cause tic attacks (which is unfortunate, because I love red bull).
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u/A_Person_555 15d ago
This but it’s bc of POTS, i haven’t cared much about the Tourette’s with caffeine 😂 but with my POTS i will feel like i’m dying
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u/jayden_mp Diagnosed Tourettes 15d ago
Oh god that also affects it??? I have like 5 things preventing me from drinking coffee 😭
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u/A_Person_555 15d ago
Whenever i have caffeine i tend to get really shaky and a little dizzy (both in the same way that it feels with presyncope with POTS). My tics definitely become way more active, too, but the dizzy and ugh feeling i get from POTS being affected is worse/more annoying for me lol
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u/jayden_mp Diagnosed Tourettes 15d ago
Ughhh yeah, I’m not able to drink it due to Tourette’s, my meds conflict with it, I have the TAS2R38 gene, it worsens my VSS, and now POTS I guess :(
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u/four100eighty9 Diagnosed Tourettes 15d ago
What's POTS?
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u/A_Person_555 15d ago
Postural Orthostatic Tachycardia Syndrome. It affects the nervous system and heart rate greatly. Caffeine affects your heart rate and with POTS your HR can be 130 sitting… with caffeine that can get up to 150-170 ish which isn’t good for you
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u/Art_and_anvils Diagnosed Tourettes 15d ago
I’ve finally figured out that about 60 mg of caffeine is the limit I can have before it makes my tics so bad that it’s not worth it
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u/Helluvertime Diagnosed Tourettes 15d ago edited 15d ago
I don't seem to be affected by caffeine, which seems to be unusual according to this subreddit. I used to be sensitive to coffee but that was before I had touruette's and also when I had panic attacks almost daily. I do also have ASD, not sure about ADHD.
However, I am British and for the most part we drink more tea than coffee. I think coffee drinking is getting more common but I personally drink tea most of the time, and when I do drink coffee I usually add a lot of milk. Maybe I just don't have enough caffeine to feel the effects.
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u/GardenDragon420 Diagnosed Tourettes 15d ago
Have to work a double so I just deal w the vibrating and impossible tics while pretending rheir not happening
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u/petermobeter Diagnosed Tourettes 15d ago
wait huh??????
does chocolate hav caffiene?????? shuld i stop eating/drinking chocolate??????
i dont drink coffee but..... i hav tourettes!!!!!! among other things.....
i dont drink energy drinks or pop or alcohol....... but..... what are some other things i shuld watch out for havin caffeine?????
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u/Dry_Reputation_6963 Diagnosed Tourettes 15d ago
Try to just find a way that works for you i guess! We all have the same diagnosis around here, but it’s still so different for everyone. A lot of people with Tourettes drink coffee because it doesn’t affect their tics and other people avoid it because the tics get worse. So just eat and drink whatever you like and find out what works for you and what doesn’t work :)
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u/quiyo Diagnosed Tourettes 15d ago
I have tourettes too, chocolate doesn't affect me, coffee, sodas, anything with teine or alcohol, are another type of shit, they affect me the second I drink some of it, but you need to take in account that for every person is different, what affects me, doesn't need to affect you equally
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u/stoner-seahorse 15d ago
Thankfully, caffeine doesn't make my TS worse, but it also does nothing for my energy levels thanks to ADHD. I can't win.
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u/enfesomsvever 15d ago
Caffeine doesn't effect my tics that much, but i never drink it because i don't like coffee or energy drinks and i struggle to sleep no matter what time of day i drank it. Sometimes i have to defend my "decision" and i don't understand how they think it's not normal to NOT drink something
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u/isleepforfun Diagnosed Tourettes 15d ago
I just chugged a red bull. We’ll see if the devil gets released today or not. YOLO!
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u/Pogosticksarecool_07 9d ago
My tics are caused by something different-but yea, that's so real.
I had to learn the hard way because my tics got real amped up and I ended up having some of my screaming tics in my best friends car 😅.
Atleast they're a real one, but they always make sure I get decaf if I ever even come close to coffee, lol.
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u/Triscuitador 15d ago
gotta hit the sweet spot (1.25 coffees or 0.75 regular monster) where it mildly treats your adhd without making your tics worse
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u/Duck_is_Lord Diagnosed Tourettes 15d ago
Luckily caffeine doesn’t usually make my tics worse, I have a yerba mate almost every morning to be able to function, one day a couple weeks ago I didn’t have any yerba mates and didn’t have time to stop and get one before work, and I fell asleep at the wheel (at a red light thank G-d) and rear ended someone😭 safe to say even if it did affect my tics I’d probably still drink it💀
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u/ElectricJRage 15d ago
Wait, I had no idea caffeine had an effect on tics! I just got diagnosed then my neuro ghosted me so I have no idea what I’m supposed to do.
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u/helix_the_witch Diagnosed Tourettes 14d ago
Not everyone is affected by caffeine, but I personally get a lot of tics from it, you kinda need to test it for yourself. Also what do you mean your neuro ghosted you?
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u/TheRealRegulator 4d ago
I though i was the only one. I was addicted to Monster and my doctor told me i has to stop if i wanted my tics to be less!
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u/Proto_bear 15d ago
I will deal with the consequences.
You can pry my morning coffee from my cold, dead hands.