first of all, let me be very very clear about this, percocet or oxycodone or any other "pain killer" will do absolutely NOTHING to relieve this pain. it is a complete and total waste of time, energy and money to take pain killers for this. Think of it this way, this pain is not from an actual real reason for pain, like stubbing your toe or hitting your thumb with a hammer, this pain is due to a MISFIRE OF NERVES. much like a epileptic has a seizure from a missfire of nerves in the brain, we with gpn have a misfire of the glossopharengial nerve. same concept, just a different nerve. So, with that in mind, the only thing that works for this is anti-seizure meds, just like they give to epileptic people. gabapentin is a freakin WONDER DRUG for this!!!!! it's label use is for seizure, but what we have IS a seizure, just not a brain seizure, but exactly the same concept and mechanics. so get some gabapentin asap.
Now to directly answer your question: I take 400mg 3 times a day as needed. sometimes i need to take the 400 4 times a day, some times only once a day depending on my pain frequency and level.
Gabapentin is a really really clean drug with minimal side effects, there are lots of people who take a lot more than I do everyday. I know people who are prescribed 2500mg per day, and even more, with no overtly bad side effects. it might make you a little spacey when you first start using it, but i promise that will go away with in a week or so. this drug saved my life, for real, I was losing hope when i found it. anyway, my email is ■■■■■■■■■■■■■■■■ if you have any more questions.
Thank you Rick for your response. To be clear, the percocet is actually for the severe joint pain I have from lupus and fibromyalgia and deg. disc disease.....unfortunately I am having a flare of all of these conditions with a migraine all at once which has landed me in the ER this past week. I first go ATN about 15 yrs. ago after having a parotidectomy on the right side of my face. It left me with nerve damage and two more operations to try and fix the tangled nerves. I now suffer with "flares" of pain but instead of having ATN this past year I was diagnosed with GPN...I have pain down my nostrils when breathing down to my throat. My neurosurgeon thinks it may be from the radiation from Gamma Knife. I'm just trying to gage how much gabapentin to take until I see my neurologist. Don't want to go to the ER again....they don't even know what these conditions are!! I'm glad to hear that the gabapentin is the correct med for this and I will up my dosage and hope for relief soon. Thank you again, so grateful.
hey, it is rick again. like i said, i take 400mg 3 times a day, but many people take a lot more. it just depends on the person. some have a higher tolerance than others to the drug and it takes more to get to an effective dose. I know, for me, the 400x3perday has been, by and large, effective. However, i know many many people with our disease that take much more to be effective. that is way gabapenten is such an awesome drug, you can take a lot of it without hurting yourself with major side effects, so you can just keep upping the dose (within reason, and under at doctors supervision) until it works for you. everybody's chemistry is different, and so then is the necessary dosage. Keep in mind, the point here is not to deaden the pain, the point it to settle the offending nerve down enough so the pain stops. we are not looking for "less-pain" we are looking for the spasm of the nerve that causes the pain to stop spasming and therefore not cause the pain in the first place....anyway, keep me posted, and i will help all i can. like i said i have had this since 2004 and i have gone through everything except the actual surgery to control it. the gabapentin works well for me, thank the Lord.
hey, it is rick again. like i said, i take 400mg 3 times a day, but many people take a lot more. it just depends on the person. some have a higher tolerance than others to the drug and it takes more to get to an effective dose. I know, for me, the 400x3perday has been, by and large, effective. However, i know many many people with our disease that take much more to be effective. that is way gabapenten is such an awesome drug, you can take a lot of it without hurting yourself with major side effects, so you can just keep upping the dose (within reason, and under at doctors supervision) until it works for you. everybody's chemistry is different, and so then is the necessary dosage. Keep in mind, the point here is not to deaden the pain, the point it to settle the offending nerve down enough so the pain stops. we are not looking for "less-pain" we are looking for the spasm of the nerve that causes the pain to stop spasming and therefore not cause the pain in the first place....anyway, keep me posted, and i will help all i can. like i said i have had this since 2004 and i have gone through everything except the actual surgery to control it. the gabapentin works well for me, thank the Lord.
hey, it is rick again. like i said, i take 400mg 3 times a day, but many people take a lot more. it just depends on the person. some have a higher tolerance than others to the drug and it takes more to get to an effective dose. I know, for me, the 400x3perday has been, by and large, effective. However, i know many many people with our disease that take much more to be effective. that is way gabapenten is such an awesome drug, you can take a lot of it without hurting yourself with major side effects, so you can just keep upping the dose (within reason, and under at doctors supervision) until it works for you. everybody's chemistry is different, and so then is the necessary dosage. Keep in mind, the point here is not to deaden the pain, the point it to settle the offending nerve down enough so the pain stops. we are not looking for "less-pain" we are looking for the spasm of the nerve that causes the pain to stop spasming and therefore not cause the pain in the first place....anyway, keep me posted, and i will help all i can. like i said i have had this since 2004 and i have gone through everything except the actual surgery to control it. the gabapentin works well for me, thank the Lord.
taken from a gabapenten web site: Max dose of gabapentin is 3600mg. Usually it is administered 900mg 4x per day at that dose. I was at that dosage for a couple years. When needed, lower dosages are slowly raised by a doctor after side effects and benefits are evaluated at lower dosages. There is a lot of information out there that indicates its effectiveness wears out for some people and an increase may be needed. However, once you are at 3600mg, you have no place to go. Personally, I would recommend trying to not go past 2700mg, so you have the mental encouragement that it can be raised if things get worse. People at these pain levels need psychological strengths as well. At 3600mg, you might be able to find a doctor that will prescribe Lyrica in addition to get to a higher dose of gaba receptors. I would suggest researching the FDA guidelines first on that issue. Everyone reacts differently to meds.
Hi Rick, I will definitely be increasing my Gabapentin. Thank you for taking time to help with this. Looking forward to less pain soon. I'll keep in touch.
rick said:
sfern,
hey, it is rick again. like i said, i take 400mg 3 times a day, but many people take a lot more. it just depends on the person. some have a higher tolerance than others to the drug and it takes more to get to an effective dose. I know, for me, the 400x3perday has been, by and large, effective. However, i know many many people with our disease that take much more to be effective. that is way gabapenten is such an awesome drug, you can take a lot of it without hurting yourself with major side effects, so you can just keep upping the dose (within reason, and under at doctors supervision) until it works for you. everybody's chemistry is different, and so then is the necessary dosage. Keep in mind, the point here is not to deaden the pain, the point it to settle the offending nerve down enough so the pain stops. we are not looking for "less-pain" we are looking for the spasm of the nerve that causes the pain to stop spasming and therefore not cause the pain in the first place....anyway, keep me posted, and i will help all i can. like i said i have had this since 2004 and i have gone through everything except the actual surgery to control it. the gabapentin works well for me, thank the Lord.
gabapentin is a freakin WONDER DRUG for this!!!!! it's label use is for seizure, but what we have IS a seizure, just not a brain seizure, but exactly the same concept and mechanics. so get some gabapentin asap.
Now to directly answer your question: I take 400mg 3 times a day as needed. sometimes i need to take the 400 4 times a day, some times only once a day depending on my pain frequency and level.
Gabapentin is a really really clean drug with minimal side effects, there are lots of people who take a lot more than I do everyday. I know people who are prescribed 2500mg per day, and even more, with no overtly bad side effects. it might make you a little spacey when you first start using it, but i promise that will go away with in a week or so. this drug saved my life, for real, I was losing hope when i found it. anyway, my email is fhew42@gmail.com if you have any more questions.
cheers,
rick
I’ve got to say that Gabapentin is a no go for me. When I tried it, the side effects for me were bad. It’s been almost 10 years now, so I can’t remember everything, but it really knocked me for a loop. It was so bad that I couldn’t function properly and it didn’t help, so I chose to experience the pain without the impairment. I started at a Very low dosage, btw.
I mention this because I see that for many people here it is the medicine of choice. I don’t want someone thinking that no one else has had trouble with it.
I completely understand, some of the other meds they tried for me didnt' work and threw me for a loop as well. We all have the same disease, but we all have our own sensitivities to medicine, what didn't work for me in the past might work great for someone else, gabapentin works for me, thank the Lord, but everybody has to kinda find out for themselves which, if any, meds for for them. Anyway,
I have no trigger that can be found, altho an endoscopy started it all. I feel the throat, tongue, ear pain building over an hour or so. Episodes last at least two and up to four hours usually. Excruciating! Anyone else similar?
hello srenatee, sorry your having such a hard time, are they sure is is Glossopharengial neuralgia? is the pain steady and building up, or immediate and shocking, like getting his with an electrical shock? Mine is like the electrical shock, not at all steady and growing, although the frequency of the shocks can, sometimes, grow over the hours of a major episode.....anyway, regardless of the way it is, it still sucks. have you gotten any relief from any meds? and have you seen a neurologist?
Mine bad attacks also started after a gastroscopy... My doctor thought at first the specialist must have torn my oesphagus. The specialist refused to see me even though I was in agony... I did not know at that stage what it was.
srenatee said:
I have no trigger that can be found, altho an endoscopy started it all. I feel the throat, tongue, ear pain building over an hour or so. Episodes last at least two and up to four hours usually. Excruciating! Anyone else similar?
hello srenatee, sorry your having such a hard time, are they sure is is Glossopharengial neuralgia? is the pain steady and building up, or immediate and shocking, like getting his with an electrical shock? Mine is like the electrical shock, not at all steady and growing, although the frequency of the shocks can, sometimes, grow over the hours of a major episode.....anyway, regardless of the way it is, it still sucks. have you gotten any relief from any meds? and have you seen a neurologist?
My neurologist called it GPN. Cleveland clinic didn’t know how to classify it since no trigger. Very atypical. Can’t take neurontin or tegretol . Just started lyrica but already feel awful from side effects. My episodes are not electrical shocks but build as that ice pick in the ear and tongue build over an hour or so. Plan to go to UPMC if no relief from lyrica.
where you still in pain when cleveland clinic looked at you. I mean were you having an episode at the time? boy, i don't know what to say, you might have to do the surgery. The meds work for me, but often they only work for period of time, i know one of the drawbacks of gabapentin is that tolerance grows quickly.... eventually, i figure i will have to have the operation.....i asked about whether you where having an episode in cleveland because if you were NOT actively having an episode, you might no have trigger points. i don't know, but for me trigger points are only active if i am having an episode...are you ok today?
No I was not having episode there. In fact episodes grew farther apart and finally went into remission. Recent endoscopy flared it again worse than ever. I’ve pick in ears three outa 4 days for several hours each time. Ready for any relief. Worried about my age for MVD. 65. But very healthy otherwise.
I have constant pain, and 10/10 pain attacks when off medication. The pain is every day, and varies in intensity, the attacks can last for hours. The location is pretty much base of tongue.
Pain can probably be caused in a whole lot of ways, and trying to create a neat textbook definition for pain isn't particularly useful. Treating it seems more important to me than fitting it into a textbook definition, but modern evidence based medicine seems to disagree.
I would say, YES, they are. Otherwise, why we are in that "please somebody kill me" every second pain?
While, there's no answer to our pleading, I would think that they're wrong. No proper statistic, no new treatments, no medication that would help. Everything is from the Stone Age. And on the top of it, no one interested to change the situation.