I have seen some references that eliminating caffeine from my diet could lessen the impact of TN. Has anyone had this experience? How much has eliminating caffeine helped? I love my coffee, but I hate TN even more.
Thanks.
On a related note, has anyone found that following the recommendations in this article helpful?: http://www.ehow.com/way_5612731_diet-trigeminal-neuralgia.html
Thanks.
Mark,
I don’t positively know it but I think caffeine does affect my TN. So I eliminated my one cup of coffee a day just in case. I occasionally drink a cup of decaf which isn’t totally caffeine free but I haven’t noticed any increase in pain.
Liz
My problem is my many cups a day. I stopped for a few days, didn’t see any improvement, and started again at a minimum amount. Increased my dose of Carbamazepine (on my doctor’s recommendation), and see some improvement on the new dosage so far. I think. Or could be coincidental. I never know with this. Yesterday was better than today so far. <Grumble, grumble> 
Liz K. said:
Mark,
I don’t positively know it but I think caffeine does affect my TN. So I eliminated my one cup of coffee a day just in case. I occasionally drink a cup of decaf which isn’t totally caffeine free but I haven’t noticed any increase in pain. Liz
Hi Mark, I think that it depends if its one of your “triggers” some TN sufferers feel that its more of a trigger than others. I personally would recommend you lower it, as most of the info i’ve found on TN says too. It’s the idea that coffee, sugar, sodas etc are stimulants and therefore can trigger TN attacks. If i drink coffee i feel pressure build in my face within hours - however it may not be as bad for you as I’m also Atypical TN and my symptoms can be more headachy/migraine like sometimes so maybe i’m a bit more sensitive. (i don’t know whether you’re classic TN or other)
I just came across this website’s write-up on TN and i thought that it was really good - not too hard to understand but has all the relevant info. I printed it off and i’m going to keep a copy handy for myself and any friends/family that may be enquiring. It mentions reducing caffeine, keeping hydrated etc etc
http://en.academic.ru/dic.nsf/enwiki/186731
I’ve also recently been looking at my diet and reducing fats, increasing antioxidants etc and hoping that maybe that will help too - hey, can’t hurt can it?
hope this helps! susan.
I have suffered since early 2002 but was usually fine while taking Tegretol, but started to suffer badly from TN in Aug 2009. It was so bad I had to quit my job as a teacher abroad and return home to the UK. Some days I could hardly eat or speak and at one point was woken up by excruciating electric shock pains around once an hour in the night. I finally read about the no caffeine and low fat low sugar diet in April 2010 and immediately gave up caffeine and cut down my fat and sugar intake. I had one cup of decaf coffe in the morning, a decaf green tea in the afternoon and apart from that drunk milk, water, juice etc. I also tried to eat foods with low fat and sugar, basically healthy foods and more fruit and veg etc. Within two weeks I was starting to feel healthy and the pain had decreased immenesely. Within a month I was pain free, although I still took the Tegretol. It could be a coincidence, however I did hear that others have found this method successful too. I did read something like caffeine causes the blood vessels near the brain to constrict, and i guess this causes the vessels to come more in contact with the Trigeminal nerve causing sharper pain. Anyway, I'm still on the diet and am happy to give up anything if it means a chance of no more pain. I also believe that plenty of exercise, a positive mental attitude, and the elimination of stress are important factors too as well as plenty of rest, a proper eating and sleeping pattern and avoiding overwork and activities that are likely to be exhausting.
I can't speak from experience, because I'm not a patient, but one of the Resources linked on this site, The Intractable Pain Patient's Handbook for Survival, states, on page 20 and 22, that caffeine is an opioid potentiator, which means that it is an agent which will "make opioids act stronger and last longer." Of course, it may affect different kinds of intractable pain differently.
The link from the Resources page of this site is to
While it may be true that caffeine helps opioids, it is not necessarily true that opioids help trigeminal pain in all cases.
As is noted in the fact sheet, "Common analgesics and opioids are not usually helpful in treating the sharp, recurring pain caused by Type I TN though many patients with Type II TN or trigeminal neuropathic pain do respond to opioids."
The "Striking Back" book also recommends a reduction of caffeine, as well as numerous anecdotal cases. I found that caffeine reduction helped me.
IANAD, but bottom line, reducing caffeine consumption might be a good thing to try unless one has Type II and opioids are known to be effective.
Hi, I’m not certain that it affects TN? Although I did drink several cups a day. I now only drink one cup in the morning, when I wake up. Gets me going for the day! I think it actually helps me some what! It gives us that get up & go. No, I have not found any difference with coffee/caffeine intake! Before, i was totally addicted to Coffee, but still had my TN!
It is believed that caffeine raises the blood pressure putting extra pressure on the blood vessels making TN more susceptible for this reason. Therefore reduction makes sense for us. However so many of us suffer with the meds we take that caffeine can help keep us awake and so starts the vicious cycle.................................
I cut down from 3 cups of coffee to 1-2 and it helps. I started drinking more tea instead (ginkgo, mint or green are my favourite). For a month I didn't drink coffee at all, but I find that one cup somehow helps me, two is the max and if I had any more than that things could go bad. The same goes for beer - if I have one it seems to help, if I have any more than that it makes my TN worse.
Sorry, just looked at my previous reply & I don’t think it make sense! I agree with Jackie! I think I just got confused & should not have replied! So please, if u are reading this, don’t take any notice! From a confused Sally
does this go for type 2 pain also
i have tried vicidon for pain it does not work
billfen said:
While it may be true that caffeine helps opioids, it is not necessarily true that opioids help trigeminal pain in all cases.
As is noted in the fact sheet, "Common analgesics and opioids are not usually helpful in treating the sharp, recurring pain caused by Type I TN though many patients with Type II TN or trigeminal neuropathic pain do respond to opioids."
The "Striking Back" book also recommends a reduction of caffeine, as well as numerous anecdotal cases. I found that caffeine reduction helped me.
IANAD, but bottom line, reducing caffeine consumption might be a good thing to try unless one has Type II and opioids are known to be effective.
If there was question about caffeine and TN TypeII I am afraid I don't know. I would ask Red, sure he will :) The answer above will help with this, thanks ayre :)
Mark Thomas said:
I have suffered since early 2002 but was usually fine while taking Tegretol, but started to suffer badly from TN in Aug 2009. It was so bad I had to quit my job as a teacher abroad and return home to the UK. Some days I could hardly eat or speak and at one point was woken up by excruciating electric shock pains around once an hour in the night. I finally read about the no caffeine and low fat low sugar diet in April 2010 and immediately gave up caffeine and cut down my fat and sugar intake. I had one cup of decaf coffe in the morning, a decaf green tea in the afternoon and apart from that drunk milk, water, juice etc. I also tried to eat foods with low fat and sugar, basically healthy foods and more fruit and veg etc. Within two weeks I was starting to feel healthy and the pain had decreased immenesely. Within a month I was pain free, although I still took the Tegretol. It could be a coincidence, however I did hear that others have found this method successful too. I did read something like caffeine causes the blood vessels near the brain to constrict, and i guess this causes the vessels to come more in contact with the Trigeminal nerve causing sharper pain. Anyway, I'm still on the diet and am happy to give up anything if it means a chance of no more pain. I also believe that plenty of exercise, a positive mental attitude, and the elimination of stress are important factors too as well as plenty of rest, a proper eating and sleeping pattern and avoiding overwork and activities that are likely to be exhausting.
It depends on your situation and caffeine needs. I dropped to 1-2 coffees a day from drinking the whole pot. I break the rules with Diet Coke. I have severe anemia from the anti-seizure medications which had me cut back. It could be heat. I carefully planned all my food and beverage for nine days. Three days I only had cold food and drinks, one warm and one room temp. I kept a long and it helped. Good luck.
I quit coffee cold turkey after I stopped working and my pain hasn't changed one bit. I've been drinking Arnold Palmer's Teas (Black Tea with Lemonade is my favorite) lately, and again, no difference in pain levels. I find that cold drinks instead of hot drinks soothes the burning area in my mouth (the extraction site of a tooth where the pain still radiates from). I know cold drinks may trigger some people's TN. So it's really a personal preference. I payed close attention to my pain levels and my 'GIVE ME COFFEE AND NO ONE GETS HURTS!' dependacy once I was fully weaned. But the pain is just too chronic and seared into an endless loop in my brain to have something as simple as caffeine be an issue. I wish it were that easy!! So I say bottoms up! Best of Luck. Oh, and remember there is always...Chocolate ;-)
Of course you understand Arnold Palmers Half and half contains 43 mg of caffeine, right? (more than a Starbucks single shot less than a 12 oz brewed coffee)
In the UK caffeine free is a nrom with TN not because caffeine is a cause but rather a trigger. Fot the weird part caffeine is used for a treatment where there is a migraine concern. So the answer is you have to try it to find out. Roughly a month.....
http://www.nhs.uk/Conditions/Trigeminal-neuralgia/Pages/Treatment.aspx
It seems like ANYTHING can be a trigger! So terrible.
I'm curious as to how/why "bananas" are a trigger? O.O
ModSupport said:
Of course you understand Arnold Palmers Half and half contains 43 mg of caffeine, right? (more than a Starbucks single shot less than a 12 oz brewed coffee)
In the UK caffeine free is a nrom with TN not because caffeine is a cause but rather a trigger. Fot the weird part caffeine is used for a treatment where there is a migraine concern. So the answer is you have to try it to find out. Roughly a month.....
http://www.nhs.uk/Conditions/Trigeminal-neuralgia/Pages/Treatment.aspx