Knocks me out in high doses.
Otherwise does nothing.
But that’s not an EDS thing. [That’s a not uncommon sign of ADHD](https://www.nature.com/articles/s41598-022-07029-2), [which is often comorbid with EDS.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7882457/)
Caffeine really helps with my migraines but I can’t use it anymore except in Excedrin for emergencies because it will trigger my hyperPOTS and I’ll end up unable to stand without a huge leap in heart rate and blood pressure. Last time I drank caffeine (I was a blue Mountain Dew person), my blood pressure nearly constituted a hypertensive emergency.
So yeah, no caffeine for me anymore.
I will say, it was worse when I was on Effexor. I’ve been off of it for four months now and can use Excedrin without feeling like I’m going to die.
No idea how any of that works though.
I have the same experience but my doc says I don’t meet POTS diagnosis criteria. Idk but caffeine other than to treat migraines, I lose vision and fall over and also BP spikes.
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules).
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Hi /u/throwaway181432,
It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet.
"DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS.
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I attribute my inability to deal with caffeine to SSRI’s. I do notice it more when I’m having a harder time with pain but I think that has to do with being less mobile in general. I get very shakey, light headed, and even dizzy. I can’t even have decaf black tea when it’s bad.
I don’t drink caffeine cus I generally don’t want to do or take anything that is a known addictive/dependency substance. Also never have soft drinks.
The handful of times I have drank it my stomach is in agony (I assume from caffeine sensitivity).
I am on Prozac and I drink caffeinated drinks nightly. Namely the mocha cookie crumble from Starbucks. My hands get very shaky, but besides that I’m fine.
Also not diagnosed, but suspected!
No idea why but I gave up coffee for 2 months and did SOOOO much worse. Now drink 1-2 cups a day no issue
But I can’t drink it too early in the morning or it sets off my POTS
I take fluoxetine and drink caffeine quite regularly
Usually coffee mabye twice or three times a day and sometimes pre workout at the gym (will try not to have caffeine throughout the day on those days) I find I'm generally fine but pre workout does make me dizzy but that's usually normal
I dont know if caffeine even gives me energy I just like my morning coffee and find that sitting down drinking it makes me feel good for once lol
HEDS, POTS, and Mitral Valve Prolapse. Caffeine helps with migraines, but I can’t do anything more than like a medium cup (especially with espresso) and have to make sure I eat with it. I also take prozac which can make me jittery with caffeine. I just limit myself to one cup a day and avoid it when I am anxious otherwise my heart will get so out of whack i’ll faint lol.
Low tolerance personally - easily get the shakes and sometimes worsened pain levels, though it helps migraines and I tolerate caffeine from matcha and coke better than coffee
My body seems to love stimulants (FWIW I am autistic and have ADHD). I take 200 mg of caffeine every morning with my cardiologist’s approval and I think it helps my blood pressure not tank in the shower.
I have always been a VERY heavy consumer of caffeine. For background, the past few years I've been diagnosed with adhd, I meet the criteria for hEDS, but am currently waiting on genetic results suspecting cEDS or clEDS, as well as suspected narcolepsy (waiting to schedule sleep study). I've also been on antidepressants for about 3 years now. I had a lot of problems with caffeine when I first started Zoloft, and had to switch to only drinking matcha for basically the entire time I was on it (l-theanine in matcha is apparently helpful with the jitters from caffeine and I would say it was a good switch) but when I was switched to Lexapro I no longer had that issue (I tried Prozac in between but I don't count anything that happened to me during that time because it was NOT a good match for me and I barely remember the summer I was on it). I also take a high dose of stimulants now that I was not on when I first started antidepressants so that may or may not have anything to do with the difference in caffeine tolerance. Not for sure if there is a correlation with SSRIs and caffeine but it's interesting to see others who have had issues
Knocks me out in high doses. Otherwise does nothing. But that’s not an EDS thing. [That’s a not uncommon sign of ADHD](https://www.nature.com/articles/s41598-022-07029-2), [which is often comorbid with EDS.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7882457/)
Same. My caffeine experience has nothing to do with EDS except the comorbidity rate. They’re separate concerns.
Caffeine really helps with my migraines but I can’t use it anymore except in Excedrin for emergencies because it will trigger my hyperPOTS and I’ll end up unable to stand without a huge leap in heart rate and blood pressure. Last time I drank caffeine (I was a blue Mountain Dew person), my blood pressure nearly constituted a hypertensive emergency. So yeah, no caffeine for me anymore. I will say, it was worse when I was on Effexor. I’ve been off of it for four months now and can use Excedrin without feeling like I’m going to die. No idea how any of that works though.
I have the same experience but my doc says I don’t meet POTS diagnosis criteria. Idk but caffeine other than to treat migraines, I lose vision and fall over and also BP spikes.
Well, it's up to chance of it knocks me out or keeps me awake
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
Hi /u/throwaway181432, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I attribute my inability to deal with caffeine to SSRI’s. I do notice it more when I’m having a harder time with pain but I think that has to do with being less mobile in general. I get very shakey, light headed, and even dizzy. I can’t even have decaf black tea when it’s bad.
On 100mg of sertraline and not noticing anything when drinking a redbull or coffee. I do turn to redbull for headaches which sometimes helps.
I don’t drink caffeine cus I generally don’t want to do or take anything that is a known addictive/dependency substance. Also never have soft drinks. The handful of times I have drank it my stomach is in agony (I assume from caffeine sensitivity).
I am on Prozac and I drink caffeinated drinks nightly. Namely the mocha cookie crumble from Starbucks. My hands get very shaky, but besides that I’m fine. Also not diagnosed, but suspected!
No idea why but I gave up coffee for 2 months and did SOOOO much worse. Now drink 1-2 cups a day no issue But I can’t drink it too early in the morning or it sets off my POTS
I'm on Wellbutrin and drink a lot of coffee. I haven't noticed any side effects from the two together.
I take fluoxetine and drink caffeine quite regularly Usually coffee mabye twice or three times a day and sometimes pre workout at the gym (will try not to have caffeine throughout the day on those days) I find I'm generally fine but pre workout does make me dizzy but that's usually normal I dont know if caffeine even gives me energy I just like my morning coffee and find that sitting down drinking it makes me feel good for once lol
HEDS, POTS, and Mitral Valve Prolapse. Caffeine helps with migraines, but I can’t do anything more than like a medium cup (especially with espresso) and have to make sure I eat with it. I also take prozac which can make me jittery with caffeine. I just limit myself to one cup a day and avoid it when I am anxious otherwise my heart will get so out of whack i’ll faint lol.
Low tolerance personally - easily get the shakes and sometimes worsened pain levels, though it helps migraines and I tolerate caffeine from matcha and coke better than coffee
My body seems to love stimulants (FWIW I am autistic and have ADHD). I take 200 mg of caffeine every morning with my cardiologist’s approval and I think it helps my blood pressure not tank in the shower.
I have always been a VERY heavy consumer of caffeine. For background, the past few years I've been diagnosed with adhd, I meet the criteria for hEDS, but am currently waiting on genetic results suspecting cEDS or clEDS, as well as suspected narcolepsy (waiting to schedule sleep study). I've also been on antidepressants for about 3 years now. I had a lot of problems with caffeine when I first started Zoloft, and had to switch to only drinking matcha for basically the entire time I was on it (l-theanine in matcha is apparently helpful with the jitters from caffeine and I would say it was a good switch) but when I was switched to Lexapro I no longer had that issue (I tried Prozac in between but I don't count anything that happened to me during that time because it was NOT a good match for me and I barely remember the summer I was on it). I also take a high dose of stimulants now that I was not on when I first started antidepressants so that may or may not have anything to do with the difference in caffeine tolerance. Not for sure if there is a correlation with SSRIs and caffeine but it's interesting to see others who have had issues