Alyssa Posted December 3, 2012 Report Share Posted December 3, 2012 Does this happen to anyone else? And does anyone know why?I have a love/hate relationship with coffee. I used to drink it all of the time as a pick me up, and then for awhile I quit drinking it. I started drinking it again a few weeks ago, but this time around I am having the opposite reaction. Whenever I drink coffee now, I get immediately sleepy. I had a cup this morning and afterwards my hands and legs got shakey and my eyes got heavy. Now all I want to do is curl up and sleep.It makes no sense at all. Does anyone have an explanation? I hate to give it up entirely, but this is so not the desired result! Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted December 3, 2012 Report Share Posted December 3, 2012 Alyssa,I also have a love/hate relationship with coffee. I don't have that immediate reaction to coffee, but I've noticed that in the evening (when I've had an afternoon coffee), my heart rate goes into the 40's and I feel awful and sluggish. I haven't actual checked to see what happens to my vitals after taking it. I thought maybe mine was some kind of rebound effect from the caffeine wearing off, but I'm not sure. Have you checked BP and HR at the time to see what those numbers look like? Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted December 3, 2012 Report Share Posted December 3, 2012 I used to drink coffee and caffeine all the time. After becoming sick almost 3 years ago I gave it up and can no longer due caffeine because it makes my heart rate go up and I get shaky/jittery. I used to be able to tolerate sodas but those eventually did the same thing. After cutting out caffeine and adjusting to it (about 2 years now) I feel immensely better and don't miss it anymore. I can still tolerate hot chocolate if im craving something warm... You have to find out what works for you.. maybe decaf? half-caff? something else? Quote Link to comment Share on other sites More sharing options...
cmreber Posted December 3, 2012 Report Share Posted December 3, 2012 I have been back and forth with the whole coffee thing, myself. For years, I worked 5am shifts and became very dependent on coffee! lol When I first got sick two and a half years ago, I gave it up altogether. I have recently started drinking it again, but I have to be careful how much I have and be sure to have solid food with it. Otherwise I get jittery and my heart rate goes crazy, and it sometimes sets of heartburn for me. In the mornings I have switched to half-caf and that seems to help a lot with the undesired effects. Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 4, 2012 Report Share Posted December 4, 2012 Ha! That's funny that you brought this up! I sometimes will drink a cup of half-caf when I can't fall asleep and it works like a charm. It's very strange and I wouldn't even venture a guess as to why it works, cause if I drink a cup at 3 pm in the afternoon...then the caffeine keeps me up all night! Its so weird. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted December 4, 2012 Report Share Posted December 4, 2012 POTs changed my coffee habit considerably. Prior to my crash I was using it to keep upright. Post crash, I eliminated all caffeine unsure of why i was tachy, had OI, severe abdominal issues and internal tremors. I reintroduced coffee and now like the first cup and seem much better if I have the second cup right after lunch. I have stomach issues due to the salt, double iron and high vit D; have always had stomach issues but this year have been way more exaggerated and unpredictable. Quote Link to comment Share on other sites More sharing options...
micheller Posted December 4, 2012 Report Share Posted December 4, 2012 I'm the same as CMR. I have to eat at least toast with my coffee or I get really jittery. I read that the lighter the roast, the more caffeine it has so I've been buying the darker. It doesn't help me wake up but doesn't make me sleepy either. Quote Link to comment Share on other sites More sharing options...
k&ajsmom Posted December 4, 2012 Report Share Posted December 4, 2012 I miss my caramel macchiattos ,super duper sad face lolBefore the tachycardia came into play I would drink my 2 to three cups of strong coffee everyday to keep my bp up, It always made me sleepy but I assumed it was because I was so dependent on the caffiene I didnt feel its affects anymore and with it being warm and increasing blood flow to the tummy it made me sleepy. Ive been caffiene free since june and the other day I had half a cup and it didnt effect me immediatly but later i did notice I felt jittery and bit more tachy, Im always sleepy (except at night) so I dont know if it had any effect there. My fiance brought me a cup of decaff pumpkin latte this morning...AMAZING lol although I think Im not handling the sugar well anymore, I took a sugar crash nap about an hour later... always something. I think our nervous systems are just wacky and react unrationally sometimes (or all the time) and everyday is different.sorry cant be more help =( Quote Link to comment Share on other sites More sharing options...
brethor9 Posted December 4, 2012 Report Share Posted December 4, 2012 katybug I am the same as you on the nights when I can't fall asleep and the adrenaline is really going I find a half cup of coffee really helps....so weird.....must help to break down the adrenaline or something.....but if I drink it in the afternoon I am wired for sound and not in a good way lol....Bren Quote Link to comment Share on other sites More sharing options...
Alyssa Posted December 7, 2012 Author Report Share Posted December 7, 2012 I guess the next step is to drink a big ol cup of coffee and look at my BPand HR. hopefully that will bring some answers my way.Could you guys tolerate coffee before dysautonomia? Quote Link to comment Share on other sites More sharing options...
micheller Posted December 7, 2012 Report Share Posted December 7, 2012 I lived on coffee before pots. I've found that Folger's Simply Smooth Decaf isn't as harsh on me than the regular. Quote Link to comment Share on other sites More sharing options...
peregrine Posted December 8, 2012 Report Share Posted December 8, 2012 I get no stimulant reaction to caffeine whatsoever (other than its diuretic effects). My ANS neuro recommended trying a lot of coffee all at once, so I drank two double-shot mochas in 30 minutes. End result? I felt normal, could have napped even. I apparently do react to other stimulants - the Ritalin is obviously effective in my case - but not to caffeine. Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 8, 2012 Report Share Posted December 8, 2012 I've always had to watch my coffee intake and tea too. But was fine to drink a Coke right before bedtime. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 19, 2012 Report Share Posted December 19, 2012 Does this happen to anyone else? And does anyone know why?I have a love/hate relationship with coffee. I used to drink it all of the time as a pick me up, and then for awhile I quit drinking it.I started drinking it again a few weeks ago, but this time around I am having the opposite reaction.Whenever I drink coffee now, I get immediately sleepy. I had a cup this morning and afterwards my hands and legs got shakey and my eyes got heavy. Now all I want to do is curl up and sleep.It makes no sense at all. Does anyone have an explanation? I hate to give it up entirely, but this is so not the desired result!Most definately and occasional extreme overdose reactions to small amounts of caffeine. Further chronic caffeine usage makes me feel worse. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 19, 2012 Report Share Posted December 19, 2012 In terms of explanation - in NET defiency CNS stimulation could potentially cause an increase in cerebral NE activating cerebral alpha 2 receptors and actually reducing sympathetic outflow?? Quote Link to comment Share on other sites More sharing options...
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