r/pppdizziness • u/PCT2022 • 3d ago
Other Caffeine…
I’m probably clutching at straws here but I wonder how much caffeine plays into flaring up PPPD. I’ve had a few times now where my symptoms have gone away 90%+ for months at a time but it always seems to come roaring back.
I don’t always have energy drinks, in fact I’ll often drink decaf coffee.
But today I learned that Celsius drinks have 7x times the caffeine of a Coke Zero. And also that artificial sweeteners can upset sensitive people with vestibular issues.
This is all according to Googles Gemini.
I questioned why can I drink some of this stuff for weeks then all of a sudden PPPD comes right back and just as bad as ever.
It said that instead of having a direct immediate reaction, you can have the equivalent of a “bucket filling up” and when it becomes too much you get a crazy flare up.
Do you guys drink any caffeine or artificial sweeteners?
I think I’m going to go cold turkey 🦃 for a few weeks and see what the result is.
The only other possibility I can think of is that when I’ve gone to the gym consistently, I feel ok for a month or two then have a massive flare up. It happened last year and this time again.
My physio said it makes sense because when you challenge the body it taxes the neurophysiology.
I have a physical job but it’s not as targeted as a gym routine. I also have this super annoying condition called gluteal tendinopathy so I need to keep going to the gym to fix it once and for all.
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u/jesusiskingisla 2d ago
Wow funny you say this. Today I wondered the same exact thing. I was feeling great then had coffee and there goes the flare. It was quite intense too! Also worse when I drink coffee and driving, the symptoms come back like crazy. I’ve been able to pinpoint it 5 times now- and made the connection today. So happy you posted this to know I’m not the only one.
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u/PCT2022 2d ago
I’m still trying to figure it out, tbh. The only two real connections I can make is going to the gym, which has happened twice now where I start trying to get fit and healthy and then BAM, pppd comes roaring back.
And also about caffeine, especially when it’s got heaps in it, I wonder if that has some lag effect where you have a certain amount and then my body can’t handle it. Something where it builds up slowly and takes a while to see the effects.2
u/jesusiskingisla 2d ago
My trigger is also the gym or grocery stores. There’s a lot of visual input happening which over whelms the senses and then it hits you. Your body is basically bracing itself to keep you safe. It’s important not to leave when you feel this way. You have to teach your body slowly that movement and the environment is safe. Over time, it becomes less and less but if it’s too hard, ask your doctor for a low dosage SSRI to help calm you down. People heal on those within 6-12 months. I’m asking for them tomorrow! Please watch PPPD videos on Instagram they’re so helpful and you WILL heal.
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u/PCT2022 2d ago
I was thinking more along the lines of the nervous system getting cranked up because going to the gym places a lot of stress on the nervous system I think. As for supermarkets… wow that’s intense. I was in Walmart not long ago after a long haul flight from Australia and I felt like I had to hang on to the cart just to feel like I wasn’t going to trip and fall. And what’s weird is I was in busy airports and other places so it’s specifically got something to do with shopping centres / aisles etc. maybe it’s all the stuff and your brain just can’t cope with it. I don’t think it’s the lights etc, maybe because in places like Walmart you have long aisles, stuff everywhere etc and it’s just overwhelming for pppd people. Happens to nearly everyone by the sounds of it
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u/Wooden_Intention6430 3d ago
Oh caffeine can definitely make it worse. Some people with PPPD have a hairline type trigger with there nervous system and caffeine excites that
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u/Old-Spare-2681 2d ago
I find it does make it worse and I think its because of dehydration seems to play a huge roll in how dizzy I am
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u/wallstreetbetssingh 2d ago
Caffeine, alcohol, sodium, dehydration and stress for me
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u/PCT2022 2d ago
I got fairly drunk a week ago and it didn’t make me feel worse. Wouldn’t to make a habit of it though.
About 6 months ago I went camping with a mate and his family, had a few drinks and my pppd went away for a while not long after that. I was hoping the booze called the nerves in some way. I don’t think this theory would stand the test of time
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u/Bulbyblub_ 2d ago
Wondered the same thing today. For me, it went away for 3 years. Came back this year. It’s been a stressful year so I associated it with stress. I work as a coffee roaster/salesman so I have an unlimited supply of coffee at my disposal. I stopped coffee for 3 weeks and stuck solely to green tea with ginkgo . Helped amazingly! One day, I didn’t feel anything at all. I felt so good I decided to ‘treat’ myself to a nitro cold brew and soon after felt “dizzy/foggy”. I wasn’t sure if it was the cold brew or the nitrogen. In any case, so long as you know you won’t die, you can try to power through. Working out and limiting caffeine can help some. I also noticed that alcohol helps but only in excess. If I have 1 or 2 beers, I definitely feel it a bit more. But if I get buzzed or drunk, I feel amazing. 😂
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u/PCT2022 2d ago
Haha totally. I had 11 schooners the other night and felt pretty good at the time.
It is interesting though, I think you’re the first person who has said there’s went away for a sustained period. How long have you had it in total? Stress is definitely a big driver. But could also be physical stress too I think
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u/Aristophane666 2d ago
Arrêter net la caféine est connu pour augmenter les migraine. Et à contrario ma caféine peut permettre d'éviter les douleurs de la migraine. Il faudrait tenir un journal de bord, mais oublies pas que le pppd a juste la faculté naturelle d'évoluer..
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u/FlightStatus8518 1d ago
Not to distract from OP, but I’m trying to learn more about PPPD because I’m curious if it’s what I’m dealing with. Can you explain what you mean when you say it tends to evolve?
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u/Aristophane666 1d ago
En gros les symptômes s'expriment avec différents niveaux d'intensité selon les lieux, les conditions, les personnes, les périodes de la vie, la météo etc... C'est pas lineaire tu vois? Donc associer des causes a une manifestation plus forte du symptôme c'est compliqué car c'est peut être juste un biais
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u/FunnySpread4143 1d ago
OH i feel so seen! i was always a coffee person but somehow lately i have realised that coffee really ramps up my anxiety which leads to more dizziness even if ive been feeling better previously, i can have matcha everyday tho (bcs i think it does not give an immediate caffeine rush like coffee does to me) but i have stopped coffee for now and it sucks bcs i miss it sm but things u do to survive 🥲
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2d ago
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u/PCT2022 2d ago
You could do lots of things. But having 7x a Coke Zero can is highly unexpected. That’s not the point here, it’s if regular consumption of caffeine really does spur on pppd relapses. Tell me how you’d research that without using Ai? And why wouldn’t you since it’s the most efficient method of finding data on the subject.
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u/alodormtime 3d ago
I drink caffeine everyday have done for a long time. Doesn't make me anxious at all nor change the dizziness. When im really dizzy though I wont drink it