What an awful feeling this condition is. I was on tegretol for two weeks initially and call my doc it was giving me severe headaches, so I got on gabapentin. When my face swells from the pain, I take two ibuprofins to help with the swelling and it worked, but I was taking it every day for almost four days and by the fifth day, my body just didn't feel right, I had no energy, lethargic I just didn't feel myself. I like the gabapentin, but when the pain hits, it just takes me down...my ear literally feels like someone is stabbing the inside of it. So, my daughter sent me this link about Cedar Mt Sinai in CA. TN is listed as one of its clinical studies has anyone heard or have gone there?
Hi!
I take gabapentin, too. Never tried Tegretol. I had problems with the gabapentin at first but built up slowly. I found over time, I was able to tolerate it with fewer problems. As for treatments other than oral meds . . . some have found relief with acupuncture, upper cervial chiro, face creams. Alternative medicines (which I totally favor) tend to be expensive and not covered by insurance--for instance Reiki was $60 per visit. I have found that a heat pad is soothing when I get the ear pain. I also plug the ear with a cotton ball. On bad days I add a dose of gabapentin and also use clonozepam. Some doctors prefer Baclofen along with gabapentin. Sometimes I will take an OTC like tylenol PM which helps me sleep. Lots of pills! Not what you are looking for. I am retired so I am fortunate that I don't have to try to concentrate on a job while I am doped up. You may want to look into UCC --some swear by it. There are websites you can google to see where the nearest practice is for you. Also a TENS unit has proven effective for some. I have not heard of the clinical study you mentioned. Hope you are feeling better . . . hang in there. This site is wonderful and the people here have done it all!
Mary
Thank you for your response. I found out recently that gabapentin is the only med that breaks down in your blood stream in lieu of the other meds that places a strain on your organs, like you kidney and liver? I was taking ibuprofin last week with the gabapentin from Wednesday until Sunday and by Monday, I was pretty dysfunctional - lethargic, no energy, my eyes were glazed and red...I came home from work and crashed on my recliner...I was very much out of sorts..rested by still soar the following day and made my butt get up and go to work. I noticed that I cannot stand loud noises and bright lights. I have in addition to the facial pain, migrane headaches and I can differentiate between the two pains believe it or not. I feel that I move slower and it takes time for me to feel almost normal..like I need to catch up to my life, because while experiencing pain in my ear, across my forehead or my jaw, I still have the lingering dual ache and always fearful of that stabbing pain to return and find myself moving slow so not to trigger its ugly return...
I have learned more on this support site than anywhere else and am glad I'm not alone. Long long ago when I use to say, "my face is killing me", oh, the unbelievable responses..now, I don't like such an idiot!
marymo said:
Hi!
I take gabapentin, too. Never tried Tegretol. I had problems with the gabapentin at first but built up slowly. I found over time, I was able to tolerate it with fewer problems. As for treatments other than oral meds . . . some have found relief with acupuncture, upper cervial chiro, face creams. Alternative medicines (which I totally favor) tend to be expensive and not covered by insurance--for instance Reiki was $60 per visit. I have found that a heat pad is soothing when I get the ear pain. I also plug the ear with a cotton ball. On bad days I add a dose of gabapentin and also use clonozepam. Some doctors prefer Baclofen along with gabapentin. Sometimes I will take an OTC like tylenol PM which helps me sleep. Lots of pills! Not what you are looking for. I am retired so I am fortunate that I don't have to try to concentrate on a job while I am doped up. You may want to look into UCC --some swear by it. There are websites you can google to see where the nearest practice is for you. Also a TENS unit has proven effective for some. I have not heard of the clinical study you mentioned. Hope you are feeling better . . . hang in there. This site is wonderful and the people here have done it all!
Mary
I go to Cedars-Sinai in Los Angeles. My doctor is top notch and I really feel that I’m getting the best care I can. If you’d like, you can send me a message and ask any questions you have.
Thanks Crystal. I believe the specialists are located in the WEst as well as the East....no specialist in the Midwest unfortunately. John Hopkins is currently recruiting candidates for clinical studies on TN. There are all kinds of requirements like no meds for the past 6 months. Then on Sept 24th there is a conference in LA I believe of the Western Neurosurgeons to discuss TN....
Crystal, I did email Dr. Black asking for a referral in the state of Illinois. Unfortunately, the response I received was "sorry, don't know anyone in Illinois" - the response came from a DDS...so, if you would kindly ask if he knows of anyone in Illinois who knows a little more about TN that I can visit with that would truly be fantastic!..
Don't get too discouraged. It took me a while to build up a tolerance to the medication. There are still times I feel a bit loopy, but I can even drive now. I, too, suffer from migraines. We become experts on pain, don't we? I have more good days than bad (yay!) but a bad day sets me back for several days. I tend to go into hiding and, like you, don't want to move. I build a cocoon around me and wait it out. A distraction as hard as it may be to get into does help me.
Hopefully you will find a doctor to work with you. I have yet to find a neurologist I can really work with. I have a local guy who keeps my med scripts and a not-so-local guy who is unreachable except by appts every 3 months and I feel I have to start over each time.
Hang in there.
Mary
redbaron said:
Thank you for your response. I found out recently that gabapentin is the only med that breaks down in your blood stream in lieu of the other meds that places a strain on your organs, like you kidney and liver? I was taking ibuprofin last week with the gabapentin from Wednesday until Sunday and by Monday, I was pretty dysfunctional - lethargic, no energy, my eyes were glazed and red...I came home from work and crashed on my recliner...I was very much out of sorts..rested by still soar the following day and made my butt get up and go to work. I noticed that I cannot stand loud noises and bright lights. I have in addition to the facial pain, migrane headaches and I can differentiate between the two pains believe it or not. I feel that I move slower and it takes time for me to feel almost normal..like I need to catch up to my life, because while experiencing pain in my ear, across my forehead or my jaw, I still have the lingering dual ache and always fearful of that stabbing pain to return and find myself moving slow so not to trigger its ugly return...
I have learned more on this support site than anywhere else and am glad I'm not alone. Long long ago when I use to say, "my face is killing me", oh, the unbelievable responses..now, I don't like such an idiot!
marymo said:Hi!
I take gabapentin, too. Never tried Tegretol. I had problems with the gabapentin at first but built up slowly. I found over time, I was able to tolerate it with fewer problems. As for treatments other than oral meds . . . some have found relief with acupuncture, upper cervial chiro, face creams. Alternative medicines (which I totally favor) tend to be expensive and not covered by insurance--for instance Reiki was $60 per visit. I have found that a heat pad is soothing when I get the ear pain. I also plug the ear with a cotton ball. On bad days I add a dose of gabapentin and also use clonozepam. Some doctors prefer Baclofen along with gabapentin. Sometimes I will take an OTC like tylenol PM which helps me sleep. Lots of pills! Not what you are looking for. I am retired so I am fortunate that I don't have to try to concentrate on a job while I am doped up. You may want to look into UCC --some swear by it. There are websites you can google to see where the nearest practice is for you. Also a TENS unit has proven effective for some. I have not heard of the clinical study you mentioned. Hope you are feeling better . . . hang in there. This site is wonderful and the people here have done it all!
Mary
Question, I have kidney disease IGA nephropathy, and am now on tpopmax 400 mg daily, dilantin 200 mg daily and Lyrica 200 mg daily. Anyone know what this is doing to my weakened kidneys?
John
John, I "bing" the tpopmax 400 and found this information: "This medicine may increase the chance of developing metabolic acidosis. If left untreated, this can cause kidney stones, bone disease, or slowed growth in children. Symptoms include breathing fast, fatigue, loss of appetite, irregular heartbeat, or loss of consciousness. Call your doctor immediately if you experience any of these side effects. Also, tell your doctor about any surgery you plan on having while taking this medicine since this may increase your risk for metabolic acidosis." My suggestion is to look up the meds you are taking before taking them - because this is only one of the three you listed in your discussion.
John Traylor said:
Question, I have kidney disease IGA nephropathy, and am now on tpopmax 400 mg daily, dilantin 200 mg daily and Lyrica 200 mg daily. Anyone know what this is doing to my weakened kidneys?
John