After a three day stay in the hospital this week, I am being switched from Neurontin to Tegretol by my neurologist. What might I expect? I know that all of our experiences with medicines are different. I know they affect different people in alternate ways. I am curious if anyone else has made this shift from one to the other. Did you feel the outcome was positive? My TN2 pain is already behaving differently after two days of Tegretol. Instead of major burning of the eye, eye socket, and cheek like I have been experiencing for a couple of weeks I now have tickles. They almost feel like "moth wings" or a flying insect brushing past me. Granted, they still hurt if I touch them, but after two days the burning has subsided to the corner of my right eye and a small area to the right of my right nostril. Has anyone else's TN/TN2 pain behaved differently when they've switched from one anti-seizure to another? Please share your experiences with me. ~Fred
Yes, this happen. When I was changed from ( forget the name ) to carbamazepine , my pain shifted from the jaw (which was very sensitive to touch) to a point just below the right side of my lip. The pain was sharper and more intense when I started to eat or talk but it went off after a couple of minutes. Sometimes, there was an invisible insect crawling on my cheek, but I had to ignore it for brushing it away would trigger fresh pain at a point in front of my ear. It is strange that carbamazepine is redirecting all the pain to one point.
My experience with Neurontin : I had a dull headache (24/7) made worse when walking , so was prescribed with Neurontin . After taking it, I felt a fiery dragon moving up quickly from my jaw to the head and resting there. The pain escalated instead of subsiding. I took a few times and gave it up, couldn’t stand the pain. Then my neurologist changed it to …
I have TN1 - so when I went to Trileptal - BAM pain was gone in 48 hours
Neurontin made me dizzy-- but 10 months of Trileptal - losing my IQ and personality drove me to MVD
Lets face it - anti seizure is anti seizure in terms of its intended effects. I could give you a laundry list of meds I have been on. I personally had no pain relief from any of the meds mention here except tegretol. I do not have complete pain relief but it is the only one that made a difference. I am currently taking 1000mg (you read correctly) daily in combination with dilantin and baclofen. So when the doctors ask me if the meds are helping the pain, I say" Iknow how you want me to answer, but what I can tell you is the medicine does not stop the pain, it just helps me deal with it" I am so "stoned" all day long that I can tolerate the pain most days. And I am a middle school teacher, so I am fairly rad i am so relaxed. Every drug is going to effect you differently you just have to decide how is it helping you and can you tolerate the side effects. I am a an idiot on these meds but in agony off of them, so for now I choose idiotacy. Do you mind me asking what was the experimental procedure? - Deanna
Yes. With a bunch of others in between. Was sleeping so much (12 hours/day) the first month of Tegretol, and then finally adjusted and felt fine. Except that I had short term memory problems, so am off it and have been on two other things since then. Starting to feel like all the switching is making me sicker.
Of all the TN meds I have taken Fred, Tegretol has had the best pain relief outcome. I have switched back to Neurontin which also works reasonably well for me.The last time I switched Teg- Neurontin I had the differences as you describe. In different places but as you say. It wore of after about 3 weeks and the pain stopped altogether. That is what I am hoping for you!
Fred, I went straight onto this with TN1 and is worked very well for me. I began at just 200mgs to avoid side effects and increased to 600mgs which did the trick. Pain was under control. Hope so much that it works for you. As I did not increase beyond 600mgs I had only a couple of side effects.
Deanna, I do not mind discussing my goings on. I have a constant headache on the right side of my head that started a month or more before my Trigeminal pain began. When I say "constant", I mean literally all the time. My neurologist feels (or rather felt, before my stay in the hospital this week) that the headache and the Trigeminal pain were two different events that were merely playing off of each other. That being the line of thought, he put me in the hospital for a sort of "shotgun" assault on the headache portion of my pain. This "shotgun" included an IV drug called DHE-45, IV infusions of magnesium, as well as Indocin (indomethacin) all to combat the headache. I cannot say that I felt the magnesium doing anything, but the DHE-45 was a complete failure. The one neurology doctor that was overseeing most of my care while I was in the hospital said that DHE-45 is the "biggest gun" (his words) that my state can use on a headache. It definitely felt like I was under an assault from this "big gun" of a drug. The first time I took a test dosage, it slammed me with an occipital headache for about an hour after they stopped the treatment. This headache was on the same side as my TN2 pain and my constant headache. I have never had a headache on the back of my head before. The second treatment of it was okay in that I did not get a headache that was worse than the one I already had...it did not do anything to my baseline, constant headache though. The third, and final time I allowed them to give me the DHE-45 treatment; however, they upped it to a full strength dosage and "WHAM" did it hit me hard. I had a headache on the entire right side of my head (front, forehead, top, side, rear) that nearly rivaled my worst neuralgia pain that I have ever experienced.
The treatment was a failure. I am not compatible with that drug. It has now been 30+ hours since I have received my last treatment of DHE-45 and I still have an inkling of an occipital headache and the normal right side headache that I went in for is worse than usual. Throughout my entire hospitalization, the only thing that lessened my headache was my 50mg doses of Indocin. This is nothing new. I have been on Indocin at some dosage since October 2011 and it is the only thing that ever lessens my headache.
The switch to Tegretol from Neurontin occurred during the past 3 days as well, and the neurologist that was overseeing my hospital did not ween me off the Neurontin. He literally went from a 300mg dose of Neurontin to a 100mg dose of Tegretol about 10 hours later. I am sure that did not aid in helping me feel better. ~Fred
deanna said:
Lets face it - anti seizure is anti seizure in terms of its intended effects. I could give you a laundry list of meds I have been on. I personally had no pain relief from any of the meds mention here except tegretol. I do not have complete pain relief but it is the only one that made a difference. I am currently taking 1000mg (you read correctly) daily in combination with dilantin and baclofen. So when the doctors ask me if the meds are helping the pain, I say" Iknow how you want me to answer, but what I can tell you is the medicine does not stop the pain, it just helps me deal with it" I am so "stoned" all day long that I can tolerate the pain most days. And I am a middle school teacher, so I am fairly rad i am so relaxed. Every drug is going to effect you differently you just have to decide how is it helping you and can you tolerate the side effects. I am a an idiot on these meds but in agony off of them, so for now I choose idiotacy. Do you mind me asking what was the experimental procedure? - Deanna
elstep,
I am being started out on 200mgs (100 every 12 hours) of Tegretol. This is down from 900mgs of Neurontin a day. I know, however, that one cannot really compare the differences between 900mgs of Neurontin and 200mgs of Tegretol.
Fred
elstep said:
Fred, I went straight onto this with TN1 and is worked very well for me. I began at just 200mgs to avoid side effects and increased to 600mgs which did the trick. Pain was under control. Hope so much that it works for you. As I did not increase beyond 600mgs I had only a couple of side effects.
Fred I wanted to take more for the pain, but followed the doctors instructions and kept to the 200mgs to begin with. After a 5 days went back to see a different doctor and she said it was now ok to increase. I began by taking 100mgs 6 times a day, but changed to 200mgs 3 times a day and this then worked.
I later brought Amitriptyline into the picture. Best of Luck
Fred I went through a period of suffering back of head pain/aches. They begun in my neck and crept up into the lower back of head. I had to lay still and they would ease. I had to put my head flat down and rest then I would find relief. I remember laying on grass verges if I was out as it was the only thing I could do to ease it. Walking or being in a car was awful as i felt i was being shaken about, I was ultra sensitive to any movement.. The stopped after about 6 weeks. I have thankfully never had them since. My neuro said they were migraines. Mine were not constant and came on when I was tired. Sometimes these things can go as quickly as they came.
That's unusual, usually you take both for awhile (Neurontin and Tegretol), staying on and then gradually going down on the Neurontin. I've asked to just be switched because it's exhausting to be on both, but they always say no . I think they want to change one thing at once to see what the effects are. But at the point you're at right now (I'm thinking it can only get better!) it seems like you would want to be on both. Good luck!
Thanks mac,
I was surprised that the care doctor during my stay switched me from one to the other cold turkey, but I figured that he was a neurologist and I am not. Part of me wonders if the "terrible" that I have felt over the past couple of days was not withdraw from the Neurontin that they took me off of cold turkey. ~Fred
I fainted one time from not taking my neurontin, but it was at a higher dosage. I think I was on 1800 per day at the time. 600 three times a day and had forgetten to take two of them. I was getting ready to have GKRS surgery the next day. The dog was getting sick in the middle of the night so I got up fast and took two steps everything went black and I heard my husband calling my name, I went down and on my way down I hit the corner of the dresser with my back. Ouch. Never lost consciousnes. But it was pretty scary. The next day when they lifted me up to sit up after the procedure they touched that sored SPOT!!! Never forget that one....
I don't know which one affects me more... I am on both tegretol AND neurontin... 100mg of each 3x a day for a total of 600mgs.
The MAIN things I deal with are drowsiness/dizziness and brainfog... sometimes not being able to "find words... jumble words etc"
Random side effect... the chewable tegretol tablets.. kind of make my tongue tingle lol. not troublesome though... just kinda weird.
I also find.. that even if I'm pain free for the time...I get a lot of pain RIGHT AFTER taking the meds before they calm down again... anyone else get that??
I am currently weaning off of the 600mg daily dose of Tegretol that I have been on for the last 8 mo. Tegretol totally helped my ATN pain. Calmed things down, not totally gone but made life much easier. Tegretol has made me so forgetful — I loose my words ALL the time. I call it a "Tegretol moment". Wanted to let you know though that I also get a lot of burning pain. Mine was in my jaw and cheek area. It got so bad my face would swell up. I started taking 300mg of Lyrica a day about 4 months ago and that totally helped the burning pain. Also, ice packs were my life saver when I would get bad burning spells. I still keep an emergency ice pack in my purse in case it happens when I'm out and about. Good luck!!! Jessica
Fred, have you had MRI or a CT scan of the brain....I'm a believer anybody who is Diagnose with TN should have a MRI or a Ct scan...i had headaches at the baseline and numbness ,sharp stabbing pains on right side of face had a MRI was diagnose with a a Brain tumor ..just don't go on once opinion always get 2 or 3 opinion on any major health issues....Donna
aCuppaCoffee said:
Deanna, I do not mind discussing my goings on. I have a constant headache on the right side of my head that started a month or more before my Trigeminal pain began. When I say "constant", I mean literally all the time. My neurologist feels (or rather felt, before my stay in the hospital this week) that the headache and the Trigeminal pain were two different events that were merely playing off of each other. That being the line of thought, he put me in the hospital for a sort of "shotgun" assault on the headache portion of my pain. This "shotgun" included an IV drug called DHE-45, IV infusions of magnesium, as well as Indocin (indomethacin) all to combat the headache. I cannot say that I felt the magnesium doing anything, but the DHE-45 was a complete failure. The one neurology doctor that was overseeing most of my care while I was in the hospital said that DHE-45 is the "biggest gun" (his words) that my state can use on a headache. It definitely felt like I was under an assault from this "big gun" of a drug. The first time I took a test dosage, it slammed me with an occipital headache for about an hour after they stopped the treatment. This headache was on the same side as my TN2 pain and my constant headache. I have never had a headache on the back of my head before. The second treatment of it was okay in that I did not get a headache that was worse than the one I already had...it did not do anything to my baseline, constant headache though. The third, and final time I allowed them to give me the DHE-45 treatment; however, they upped it to a full strength dosage and "WHAM" did it hit me hard. I had a headache on the entire right side of my head (front, forehead, top, side, rear) that nearly rivaled my worst neuralgia pain that I have ever experienced.
The treatment was a failure. I am not compatible with that drug. It has now been 30+ hours since I have received my last treatment of DHE-45 and I still have an inkling of an occipital headache and the normal right side headache that I went in for is worse than usual. Throughout my entire hospitalization, the only thing that lessened my headache was my 50mg doses of Indocin. This is nothing new. I have been on Indocin at some dosage since October 2011 and it is the only thing that ever lessens my headache.
The switch to Tegretol from Neurontin occurred during the past 3 days as well, and the neurologist that was overseeing my hospital did not ween me off the Neurontin. He literally went from a 300mg dose of Neurontin to a 100mg dose of Tegretol about 10 hours later. I am sure that did not aid in helping me feel better. ~Fred
deanna said:Lets face it - anti seizure is anti seizure in terms of its intended effects. I could give you a laundry list of meds I have been on. I personally had no pain relief from any of the meds mention here except tegretol. I do not have complete pain relief but it is the only one that made a difference. I am currently taking 1000mg (you read correctly) daily in combination with dilantin and baclofen. So when the doctors ask me if the meds are helping the pain, I say" Iknow how you want me to answer, but what I can tell you is the medicine does not stop the pain, it just helps me deal with it" I am so "stoned" all day long that I can tolerate the pain most days. And I am a middle school teacher, so I am fairly rad i am so relaxed. Every drug is going to effect you differently you just have to decide how is it helping you and can you tolerate the side effects. I am a an idiot on these meds but in agony off of them, so for now I choose idiotacy. Do you mind me asking what was the experimental procedure? - Deanna
Jess, That's funny..Teg moment. LOL I like it.. Min
JessicaG said:
I am currently weaning off of the 600mg daily dose of Tegretol that I have been on for the last 8 mo. Tegretol totally helped my ATN pain. Calmed things down, not totally gone but made life much easier. Tegretol has made me so forgetful — I loose my words ALL the time. I call it a "Tegretol moment". Wanted to let you know though that I also get a lot of burning pain. Mine was in my jaw and cheek area. It got so bad my face would swell up. I started taking 300mg of Lyrica a day about 4 months ago and that totally helped the burning pain. Also, ice packs were my life saver when I would get bad burning spells. I still keep an emergency ice pack in my purse in case it happens when I'm out and about. Good luck!!! Jessica
Donna ,
I had 2 CT Scans in September, an MRI with and without contrast in October, and a Thin-slice MRI with and without contrast a couple of nights again. Have also had a short run EEG (15 minutes) and an expanded EEG (1 hour) on Tuesday morning of this week while in the hospital. All tests came back "normal". The Thin-slice MRI did not show any signs of veinous compression of the Trigeminal Nerve on the right side where my persistent headache and Trigeminal pain occur. I suppose that is both good and completely frustrating as my neurologist again has no idea why my head hurts constantly and I have this Trigeminal facial pain.
~Fred
donna said:
Fred, have you had MRI or a CT scan of the brain....I'm a believer anybody who is Diagnose with TN should have a MRI or a Ct scan...i had headaches at the baseline and numbness ,sharp stabbing pains on right side of face had a MRI was diagnose with a a Brain tumor ..just don't go on once opinion always get 2 or 3 opinion on any major health issues....Donna
Fred,
If you mentioned it, I missed it and apologize; but how much Neurontin/Gabapentin were you taking prior to this procedure? I'm now trying to calibrate my Gaba. dosage level and am asking for input from members here that indicate they've been on Gaba. for a while. I was on 600mg per day--didn't even begin to do it for me as I have very intense Type1 shocks.Gabapentin is the only med that I currently take for my TN. Neurodoc said OK to increase by gradual steps...I'm now doing 1800mg, and pain is subsiding nicely for now, but I'm sleepy and "spaced-out"--(An old 1960's term) Neurodoc will change my meds if I express the need to do so...I'd prefer Gaba. if we can get the dosage figured out, as this med appears to be fairly benign. Thx. Rick
aCuppaCoffee said:
Thanks mac,
I was surprised that the care doctor during my stay switched me from one to the other cold turkey, but I figured that he was a neurologist and I am not. Part of me wonders if the "terrible" that I have felt over the past couple of days was not withdraw from the Neurontin that they took me off of cold turkey. ~Fred