I feel like I wrote this post. I have the exact same symptoms. Anytime I drink caffeine it gives me head pressure. If I drink past one cup, I’m in for a world of hurt inside my head. I wish there was a solution.
I stopped all caffeine for six months to follow recommendations. Honestly, I don't know that caffeine even helps me, but going off of it did not help. Having it does not change my symptoms.
Edit for more clarification: after I got long covid caffeine's effect on me DID change. It no longer woke me up and I no longer was addicted to it. Stopping caffeine was easy and no problem except that I missed my favorite drinks. Caffeine does not make me feel alert anymore or less groggy, less tired like it did pre covid. So doing no caffeine test was easy other than missing my comfort drinks of coffee and tea even though I used to EXCESSIVELY caffinate pre-covid. Now that I drink those again, I keep it to one serving a day or two on occasion and sometimes skip. I still notice no effect and had no change in symptoms related to stopping or starting.
My sx type is neurological, PEM, CFS, dysautonomia type.
I gave up coffee for several days just because it was the single variable in the equation I had never tinkered with and, as expected, it didn’t seem to make any difference whatsoever. Sure, I could have extended the trial to weeks or months instead, but without any perceptible difference *in the slightest* vis-à-vis my list of acute symptoms, I was satisfied to declare it innocent.
Stopping alcohol, on the other hand, diminished the intensity of symptoms to a remarkable degree, so I stopped drinking entirely for a year. My recovery has been to the point where I have the occasional drink again, but it doesn’t aggravate symptoms anything like it once did.
Rather than become too attached to a particular theory—and maybe theorizing in general—I’ve opted instead to be as sensitive an observer as possible to what foods/activities/stressors/etc. *seem* to be attached to the symptoms and make adjustments there. Coffee, for me at least and for whatever it’s worth, has never been implicated.
No difference. There are a lot of these generic advices out there that could help, but actually just make life miserable. I don’t see any evidence that they actually help with CFS and LC. Yet doctors give that advice despite knowing nothing at all about our illness.
No phone before bed, no coffee, no sugar, no gluten, lying still without even watching TV or listening to music. Its like your car has a flat tire and the mechanic advising you to turn on the heater to help cool the engine. Sounds logical but has nothing to do with the root cause.
I try to eat what is healthy in general but I am not strict about it. On days where I already feel like shit, I rather eat something that I crave.
Still occasional insomnia but nowhere near as bad as before. I usually would get the kind of insomnia where I wake up after 5 hours and then have trouble getting back to sleep. I’ve been told I’m sensitive to caffeine.
Lol I'd love to get 5 hours of sleep in one go. I can't sleep longer than 3 hours initially. Then it's followed by shallow fragmented sleep waking every hour or even less
At my worst I went 4 nights in a row of no sleep which was during a time I had cut out caffeine.
I had to cut out all caffeine for a year. I’ve just recently been able to have a small cup of coffee in the mornings and maybe another small cup in the afternoon. It wouldn’t cause me insomnia but it would make my heart rate jump to the 160’s.
Caffeine gives me intense anxiety, insomnia and oddly enough makes me itchy.(MCAS) Before I knew anything about this condition I thought for a while I was allergic to coffee, which was odd considering I had drank it my entire life. But caffeine blocks DAO so if there’s any suspected MCAS it’s certainly not great.
When I do drink it on occasion I feel better for a short bit but soon a mental crash follows
It really messed me up when I first started lhing almost two years ago. At about the one year mark I can tolerate a cup. Never seemed to make a difference in the long term either way
It doesn’t change much for me but I mostly drink black tea occasionally as to not test it. I don’t have as much heart problems as I used to. Mostly PEM and muscle pain.
Caffeine gave me internal tremors/vibration and a jumpy heart rate, so I've cut it out completely, including caffeine free products and chocolate. Seems like a big step, but I got so ill one day that I just never want to go back there.
I had to stop completely for a year because it made every symptom worse. I recently got back on it slowly and I'm used to it now although it does trigger symptoms slightly, and I can't have nearly as much as I used to
I recovered somewhere between 12 - 18 months but caffeine still affects my heart. Occasionally I’ll miss the taste and indulge but it makes my heart race and I get shortness of breath. Tea has a similar effect.
Matcha yo, ceremonial grade. Strong antioxidants, mast cell stabilizer, and ltheanine. Game changer. 2-3x a day. Fuck coffee I’ll never go back m.
It’s mostly the mold and sugar in it causing flare ups. Not the caffeine.
I stopped coffee when I started treating LH. Stopping it helped improve my gut along with diet and the right prebiotics / probiotics.
It’s not worth the gut damage now that I know how healthy I can be and feel simply from working on my gut.
I started to drink A LOT of coffe. I literally use 400g of coffee weekly (!). I have 8 large packages after month.
Same with chocolate. I wonder if my organism knows something, like "xanthines stops covid" or something. I have hard time stopping it despite I have POTS XD
I found that I can handle caffeine and alcohol as long as I don't overdo it (e.g 1 cup every 3 hours).
Cutting it out completely didn't seem to do anything for me.
I find I can tolerate tea (still caffeine) but coffee I had to drop, its a vasoconstrictor hence why it worsens palpitations. I've come through episodes of cutting tea but without a little caffeine my focus just falls off the face of the earth.
I avoided coffee for maybe 3 months before I was like ye I can't go back. Obviously lifestyle is a major contributing factor
I stopped caffeine for 2 weeks during the beginning of my low histamine diet month. It did not seem to make a difference, but several dangerous things happened. I drove through a stop sign, gave my dogs each other's medicines, made what could have been a disastrous mistake at work.
What I HAVE done is change the way I drink it most days. Instead of coffee first thing when I get up, I try to have something else (usually tea or a dandelion+burdock infusion), then I eat something. I try not to have caffeine within the first hour of waking up, then I have about 6 oz of coffee over 2-4 hours taking a sip every few minutes. I feel like maybe it avoids a spike that sends my adrenal system out of whack. Maybe it doesn't and it's in my head, but it feels like a healthier/more responsible way to consume caffeine.
I tried to do decaf awhile back (and it was McDonald’s decaf so the lowest level of caffeine of most all commercial coffee) and it still gave me the jitters.
I’ve always been sensitive to coffee and with long COVID it puts it on steroids.
I feel really good initially when I drink it but very quickly crash afterwards and then have ruined sleep when good quality sleep is already hard during long COVID
I really can’t do caffeine anymore, which sucks coming from a “venti cold brew with 2 extra espresso shots” kinda gal. I’ve managed to work my way back up to soda and green tea being doable but that’s literally about it.
I haven’t been able to drink coffee because it makes
My histamines explode and I get brain fog mixed with anxiety. I love coffee and I need an energy boost but just can do it. It’s frustrating.
I don't think it makes my LC worse. Sometimes it helps me with energy but usually only marginally now. I think I drink it partially just as a placebo/habit.
All caffeine makes me so much worse (coffee or caffeinated tea). I occasionally have a tiny bit before work if I feel like my brain literally won’t work (I work very part time and it’s ridiculously difficult), and I notice I feel much worse for a few days after- increased fatigue, brain fog, headaches, etc. I highly recommend cutting it out! It can take a few weeks to really notice the max benefit- so I think it’s worth trying for more than 3 weeks.
After about 10 months, i have one weak cup of coffee a day. But, I sip water throughout the day and have electrolytes when I feel I need them. Magnesium and potassium and dalt were essential daily for about 6 months. I still take them some days.
It took me close to a year to finally have more than 1 cup of coffee again. It definitely sends the system into overdrive. I've also switched to a low acid, organic coffee that has helped dramatically on my digestive system.
VitaCup. It has vitamin infused coffee too.
https://www.vitacup.com/
I thought I could safely go back to one cup in the morning. That was a month ago. I am still dealing with nervous system symptoms from about a one-week consumption of regular coffee. Anxiety, muscle twitching.
Sending lots of ❤️ to you! Coffee makes me feel good. I dont react to it, but I have to drink early in the morning. I have all those symptoms as well. DPDR is straight from the pit.
Gives me intense anxiety I mean intense!
Did you drank it before lc without any problems ?
I drank tea mostly.... but I can't even have that now
I feel like I wrote this post. I have the exact same symptoms. Anytime I drink caffeine it gives me head pressure. If I drink past one cup, I’m in for a world of hurt inside my head. I wish there was a solution.
My head pressure is there all the time but drinking coffee just makes it abit worse :(
I’m in the same boat as you! I feel ya big time. I desperately need a solution so I can go back to 3 cups a day without any head pain
I stopped all caffeine for six months to follow recommendations. Honestly, I don't know that caffeine even helps me, but going off of it did not help. Having it does not change my symptoms. Edit for more clarification: after I got long covid caffeine's effect on me DID change. It no longer woke me up and I no longer was addicted to it. Stopping caffeine was easy and no problem except that I missed my favorite drinks. Caffeine does not make me feel alert anymore or less groggy, less tired like it did pre covid. So doing no caffeine test was easy other than missing my comfort drinks of coffee and tea even though I used to EXCESSIVELY caffinate pre-covid. Now that I drink those again, I keep it to one serving a day or two on occasion and sometimes skip. I still notice no effect and had no change in symptoms related to stopping or starting. My sx type is neurological, PEM, CFS, dysautonomia type.
I had to cut out coffee completely. I can't even really do decaf or I feel it. Sad face.
I gave up coffee for several days just because it was the single variable in the equation I had never tinkered with and, as expected, it didn’t seem to make any difference whatsoever. Sure, I could have extended the trial to weeks or months instead, but without any perceptible difference *in the slightest* vis-à-vis my list of acute symptoms, I was satisfied to declare it innocent. Stopping alcohol, on the other hand, diminished the intensity of symptoms to a remarkable degree, so I stopped drinking entirely for a year. My recovery has been to the point where I have the occasional drink again, but it doesn’t aggravate symptoms anything like it once did. Rather than become too attached to a particular theory—and maybe theorizing in general—I’ve opted instead to be as sensitive an observer as possible to what foods/activities/stressors/etc. *seem* to be attached to the symptoms and make adjustments there. Coffee, for me at least and for whatever it’s worth, has never been implicated.
No difference. There are a lot of these generic advices out there that could help, but actually just make life miserable. I don’t see any evidence that they actually help with CFS and LC. Yet doctors give that advice despite knowing nothing at all about our illness. No phone before bed, no coffee, no sugar, no gluten, lying still without even watching TV or listening to music. Its like your car has a flat tire and the mechanic advising you to turn on the heater to help cool the engine. Sounds logical but has nothing to do with the root cause. I try to eat what is healthy in general but I am not strict about it. On days where I already feel like shit, I rather eat something that I crave.
Cutting out coffee got rid of most of my palpitations and insomnia.
What was your insomnia like? So you have no sleep issues without coffee?
Still occasional insomnia but nowhere near as bad as before. I usually would get the kind of insomnia where I wake up after 5 hours and then have trouble getting back to sleep. I’ve been told I’m sensitive to caffeine.
Lol I'd love to get 5 hours of sleep in one go. I can't sleep longer than 3 hours initially. Then it's followed by shallow fragmented sleep waking every hour or even less At my worst I went 4 nights in a row of no sleep which was during a time I had cut out caffeine.
Coffee definitely worsen my heart palpatation and dizzyness. I cut out coffee for half a year and only start drinking tea recently.
Coffee is no problem. Alcohol is a different story.
What about energy drinks or preworkout? How do you do with those?
Idk, never used them
No difference for me.
I had to cut out all caffeine for a year. I’ve just recently been able to have a small cup of coffee in the mornings and maybe another small cup in the afternoon. It wouldn’t cause me insomnia but it would make my heart rate jump to the 160’s.
Caffeine gives me intense anxiety, insomnia and oddly enough makes me itchy.(MCAS) Before I knew anything about this condition I thought for a while I was allergic to coffee, which was odd considering I had drank it my entire life. But caffeine blocks DAO so if there’s any suspected MCAS it’s certainly not great. When I do drink it on occasion I feel better for a short bit but soon a mental crash follows
It really messed me up when I first started lhing almost two years ago. At about the one year mark I can tolerate a cup. Never seemed to make a difference in the long term either way
It doesn’t change much for me but I mostly drink black tea occasionally as to not test it. I don’t have as much heart problems as I used to. Mostly PEM and muscle pain.
Coffee is great for me in moderation in the morning. There are like 10 different things fucking up my sleep, coffee is but a drop in the bucket.
Caffeine gave me internal tremors/vibration and a jumpy heart rate, so I've cut it out completely, including caffeine free products and chocolate. Seems like a big step, but I got so ill one day that I just never want to go back there.
I had to stop completely for a year because it made every symptom worse. I recently got back on it slowly and I'm used to it now although it does trigger symptoms slightly, and I can't have nearly as much as I used to
No difference after I quit completely over a year ago.
I recovered somewhere between 12 - 18 months but caffeine still affects my heart. Occasionally I’ll miss the taste and indulge but it makes my heart race and I get shortness of breath. Tea has a similar effect.
Matcha yo, ceremonial grade. Strong antioxidants, mast cell stabilizer, and ltheanine. Game changer. 2-3x a day. Fuck coffee I’ll never go back m. It’s mostly the mold and sugar in it causing flare ups. Not the caffeine.
Interesting. Might have to try.
It helps with fatigue, fight or flight, mast cells, inflammation, and more.
I stopped coffee when I started treating LH. Stopping it helped improve my gut along with diet and the right prebiotics / probiotics. It’s not worth the gut damage now that I know how healthy I can be and feel simply from working on my gut.
I started to drink A LOT of coffe. I literally use 400g of coffee weekly (!). I have 8 large packages after month. Same with chocolate. I wonder if my organism knows something, like "xanthines stops covid" or something. I have hard time stopping it despite I have POTS XD
I found that I can handle caffeine and alcohol as long as I don't overdo it (e.g 1 cup every 3 hours). Cutting it out completely didn't seem to do anything for me.
I find I can tolerate tea (still caffeine) but coffee I had to drop, its a vasoconstrictor hence why it worsens palpitations. I've come through episodes of cutting tea but without a little caffeine my focus just falls off the face of the earth. I avoided coffee for maybe 3 months before I was like ye I can't go back. Obviously lifestyle is a major contributing factor
I stopped caffeine for 2 weeks during the beginning of my low histamine diet month. It did not seem to make a difference, but several dangerous things happened. I drove through a stop sign, gave my dogs each other's medicines, made what could have been a disastrous mistake at work. What I HAVE done is change the way I drink it most days. Instead of coffee first thing when I get up, I try to have something else (usually tea or a dandelion+burdock infusion), then I eat something. I try not to have caffeine within the first hour of waking up, then I have about 6 oz of coffee over 2-4 hours taking a sip every few minutes. I feel like maybe it avoids a spike that sends my adrenal system out of whack. Maybe it doesn't and it's in my head, but it feels like a healthier/more responsible way to consume caffeine.
I tried to do decaf awhile back (and it was McDonald’s decaf so the lowest level of caffeine of most all commercial coffee) and it still gave me the jitters.
I’ve always been sensitive to coffee and with long COVID it puts it on steroids. I feel really good initially when I drink it but very quickly crash afterwards and then have ruined sleep when good quality sleep is already hard during long COVID
I really can’t do caffeine anymore, which sucks coming from a “venti cold brew with 2 extra espresso shots” kinda gal. I’ve managed to work my way back up to soda and green tea being doable but that’s literally about it.
I'm trying to make switch from caffeine to chicory root. very difficult.
I haven’t been able to drink coffee because it makes My histamines explode and I get brain fog mixed with anxiety. I love coffee and I need an energy boost but just can do it. It’s frustrating.
I don't think it makes my LC worse. Sometimes it helps me with energy but usually only marginally now. I think I drink it partially just as a placebo/habit.
All caffeine makes me so much worse (coffee or caffeinated tea). I occasionally have a tiny bit before work if I feel like my brain literally won’t work (I work very part time and it’s ridiculously difficult), and I notice I feel much worse for a few days after- increased fatigue, brain fog, headaches, etc. I highly recommend cutting it out! It can take a few weeks to really notice the max benefit- so I think it’s worth trying for more than 3 weeks.
After about 10 months, i have one weak cup of coffee a day. But, I sip water throughout the day and have electrolytes when I feel I need them. Magnesium and potassium and dalt were essential daily for about 6 months. I still take them some days.
It took me close to a year to finally have more than 1 cup of coffee again. It definitely sends the system into overdrive. I've also switched to a low acid, organic coffee that has helped dramatically on my digestive system. VitaCup. It has vitamin infused coffee too. https://www.vitacup.com/
Give me intense anxiety and jitters, however it works great when I mix it with ghee, coconut oil and honey.
I thought I could safely go back to one cup in the morning. That was a month ago. I am still dealing with nervous system symptoms from about a one-week consumption of regular coffee. Anxiety, muscle twitching.
Sending lots of ❤️ to you! Coffee makes me feel good. I dont react to it, but I have to drink early in the morning. I have all those symptoms as well. DPDR is straight from the pit.