I am curious to know how many people have had success with certain drugs:
Baclofen
Clonazepam
Gabapentin
Of those three, I have only taken Gabapentin. Prior to that I took the generic form of Tegratol. I have been reasonably successful with Gabapentin. I started on 200 mg, 3 times a day - we then went up to 300 mg 3 times a day and I am now taking 600 mg 3 times a day. After 4-5 weeks of the drug building up in my system I am pretty much pain free all day. for some reason my face gets sensitive again around 5 pm each day. It's ok as long as I don't touch my face'or my eye .Í take my last dose at 10 pm and sleep soundly all night. I actually wake pain free and stay that way a long time. I take my first pill at 10 am only because it is time. After having experienced the pain before Gabapentin I will take where I am now just fine. My doctor wants me pain free all the time but I am not sure he can accomplish that without side effects. So far I don;t have any and that is great.
Bendis, thank you for your reply. I am glad that gabapentin is working for you with no side effects…that is a great place to be! Unfortunately I am back on meds since my recurrence of TN in Mar/2015. I don’t know if you read my profile…was pain free for 4 years (was heavenly). Have been on tegretol which now gives me headaches & then was switched to oxcarbazine & it still caused headaches, as well as nausea & severe depression. I am going to start on baclofen today, here’s hoping for no side effects!
I had an extensive list here somewhere! Hope it didnt get lost!
I've had TN for 12+ years and tried a lot of different meds and combination of meds, but I haven't tried Clonozepam. I tried Baclofen several years ago and it had no noticeable effect on my pain. I take Gabapentin now, but only as needed to supplement the Carbamazepine I've been taking for almost 10 years. It seems to help take the edge off of severe pain outbreaks. Working with my neurologist, I adjust the Carbamazepine and Gabapentin as needed before, during and after my episodes. Hoped this helps a little. Good luck.
Thank you Kc Dancer Kc for your extensive med list!
SCmalinois, thank you for your reply. Just on my second day of baclofen & tomorrow will be increasing to 3 times a day…fingers crossed it is going to take away the pain without side effects!
You have been able to manage your pain with meds as needed for so many years without trying any medical procedures? If so, that’s amazing!
I tried oxcarbapezine -- gave me a rash and made me crazy. Then I tried gabapentin -- got a rash. I can tolerate the pain until I get a migraine with it -- then I take Imitrex and it helps a lot. I then tried baclofen, but it made my blood pressure drop and I felt a little faint. My neurosurgeon suggested amitriptalyne, and I declined it because I am already on an anti-depressant for mild depression since giving birth in 2000. Went to my psychiatrist for a routine appointment, and he said to try the amitriptalyne -- start at a low dose and up it a little if you need to. It seems to be helping, although the pain isn't entirely gone. Only time will tell. I'm still a candidate for gamma knife surgery -- just waiting for an MRI (scheduled for Dec. 23).
CindyLou, thank you for your reply. I have multiple health issues…migraines used to be one of them until I tried Topamax…never had a migraine since…it’s been so many years! Amitrip…& my body didn’t react well. Have a very high tolerance to pain meds, have been on mega doses of morphine, OxyContin & others & functioned fine. On a low dose of that med, I was a zombie, interesting how that was. So far Baclofen is helping TN pain slowly, however I am not falling asleep until 5 am & waking up at 9 am & can’t fall back asleep…that’s with taking a sleeping aid also. Hope that rectifies itself!! I’m glad your pain is controlled and I wish you good luck with your MRI!
I tried a couple nerve blocks several years ago, but the relief was minimal and didn't last too long. Tried botox injections three years ago since my neurologist said it helped another TN patient - didn't work for me. This beginning of this cold season has been horrible for me, but the adjustment in timing and dosage of Carbamazepine and Gabapentin seems to have helped the last three days so I'm hopeful it will last. I'm hesitant to go the invasive surgical route, since there's no going back, the success rate is less than I like, and there are significant risks...especially with MVD. However, I'll never say never, since my pain is debilitating when it hits and I cannot stop it with medication. If I couldn't find the right drugs and dosages to give me relief I'd be forced to consider all options. The severity of TN pain combined with the anticipation of the next jolts of pain (and not knowing how long they will last) ruins your life. My heart goes out to those sufferers who cannot find relief.
bubbie3 said:
SCmalinois, thank you for your reply. Just on my second day of baclofen & tomorrow will be increasing to 3 times a day....fingers crossed it is going to take away the pain without side effects!
You have been able to manage your pain with meds as needed for so many years without trying any medical procedures? If so, that's amazing!
I take Percocet also for a herniated disc. I'm still able to function at low doses throughout the day. Tried Topomax about 8 years ago -- made me crazy. Glad it works for somebody!
bubbie3 said:
CindyLou, thank you for your reply. I have multiple health issues....migraines used to be one of them until I tried Topamax....never had a migraine since...it's been so many years! Amitrip...& my body didn't react well. Have a very high tolerance to pain meds, have been on mega doses of morphine, OxyContin & others & functioned fine. On a low dose of that med, I was a zombie, interesting how that was. So far Baclofen is helping TN pain slowly, however I am not falling asleep until 5 am & waking up at 9 am & can't fall back asleep....that's with taking a sleeping aid also. Hope that rectifies itself!! I'm glad your pain is controlled and I wish you good luck with your MRI!
Ruins your life is right! And because most people haven't heard of TN, they don't understand it. They think it's "all in your head". That you're depressed, or a hyochondriac. And that in itself is depressing!
SCmalinois said:
I tried a couple nerve blocks several years ago, but the relief was minimal and didn't last too long. Tried botox injections three years ago since my neurologist said it helped another TN patient - didn't work for me. This beginning of this cold season has been horrible for me, but the adjustment in timing and dosage of Carbamazepine and Gabapentin seems to have helped the last three days so I'm hopeful it will last. I'm hesitant to go the invasive surgical route, since there's no going back, the success rate is less than I like, and there are significant risks...especially with MVD. However, I'll never say never, since my pain is debilitating when it hits and I cannot stop it with medication. If I couldn't find the right drugs and dosages to give me relief I'd be forced to consider all options. The severity of TN pain combined with the anticipation of the next jolts of pain (and not knowing how long they will last) ruins your life. My heart goes out to those sufferers who cannot find relief.
bubbie3 said:SCmalinois, thank you for your reply. Just on my second day of baclofen & tomorrow will be increasing to 3 times a day....fingers crossed it is going to take away the pain without side effects!
You have been able to manage your pain with meds as needed for so many years without trying any medical procedures? If so, that's amazing!
CindyLou, I hear what you say about what other people think because TN is not a visible illness. Just like the other multiple illnesses I have had starting from 1995 when I had a slip & fall on ice in the parking lot where I was working & I broke my right wrist, ended up with RSD, then…fibromyalgia, sjogren’s, lupus, severe osteoporosis, osteoarthritis, sinus problems, deviated septum, neck & back problems from 3 whiplashes,
CindyLou said:
Ruins your life is right! And because most people haven’t heard of TN, they don’t understand it. They think it’s “all in your head”. That you’re depressed, or a hyochondriac. And that in itself is depressing!
SCmalinois said:
I tried a couple nerve blocks several years ago, but the relief was minimal and didn’t last too long. Tried botox injections three years ago since my neurologist said it helped another TN patient - didn’t work for me. This beginning of this cold season has been horrible for me, but the adjustment in timing and dosage of Carbamazepine and Gabapentin seems to have helped the last three days so I’m hopeful it will last. I’m hesitant to go the invasive surgical route, since there’s no going back, the success rate is less than I like, and there are significant risks…especially with MVD. However, I’ll never say never, since my pain is debilitating when it hits and I cannot stop it with medication. If I couldn’t find the right drugs and dosages to give me relief I’d be forced to consider all options. The severity of TN pain combined with the anticipation of the next jolts of pain (and not knowing how long they will last) ruins your life. My heart goes out to those sufferers who cannot find relief.
bubbie3 said:SCmalinois, thank you for your reply. Just on my second day of baclofen & tomorrow will be increasing to 3 times a day…fingers crossed it is going to take away the pain without side effects!
You have been able to manage your pain with meds as needed for so many years without trying any medical procedures? If so, that’s amazing!
bubbie3 said:
CindyLou, I hear what you say about what other people think because TN is not a visible illness. Just like the other multiple illnesses I have had starting from 1995 when I had a slip & fall on ice in the parking lot where I was working & I broke my right wrist, ended up with RSD, then...fibromyalgia, sjogren's, lupus, severe osteoporosis, osteoarthritis, sinus problems, deviated septum, neck & back problems from 3 whiplashes,
CindyLou said:Ruins your life is right! And because most people haven't heard of TN, they don't understand it. They think it's "all in your head". That you're depressed, or a hyochondriac. And that in itself is depressing!
SCmalinois said:I tried a couple nerve blocks several years ago, but the relief was minimal and didn't last too long. Tried botox injections three years ago since my neurologist said it helped another TN patient - didn't work for me. This beginning of this cold season has been horrible for me, but the adjustment in timing and dosage of Carbamazepine and Gabapentin seems to have helped the last three days so I'm hopeful it will last. I'm hesitant to go the invasive surgical route, since there's no going back, the success rate is less than I like, and there are significant risks...especially with MVD. However, I'll never say never, since my pain is debilitating when it hits and I cannot stop it with medication. If I couldn't find the right drugs and dosages to give me relief I'd be forced to consider all options. The severity of TN pain combined with the anticipation of the next jolts of pain (and not knowing how long they will last) ruins your life. My heart goes out to those sufferers who cannot find relief.
bubbie3 said:SCmalinois, thank you for your reply. Just on my second day of baclofen & tomorrow will be increasing to 3 times a day....fingers crossed it is going to take away the pain without side effects!
You have been able to manage your pain with meds as needed for so many years without trying any medical procedures? If so, that's amazing!
CindyLou, I’ve learned it’s not worth the time or energy to care about what other people think. We know how we feel each & every day & how we struggle through the challenges!!
CindyLou, I’ve learned it’s not worth the time or energy to care about what other people think. We know how we feel each & every day & how we struggle through the challenges!!
SCmalinois…I empathize with your challenges. Do you have other health issues? The reason I am asking is because is I had MVD surgery March/2011 with 50% of success due to all of my other health issues. After meds stopped working I had a major decision to make, it was difficult…my husband didn’t want me to have the surgery after the neurosurgeon described it all, with the risks…the extensive recovery for me again because of I’m complicated & then the 50/50 success rate?? I went for it positively, it was a very difficult & lengthy surgery (& I have had way too many) to recover from, however the great news was it was successful! Statistics show most people have 10 pain free years. I had 4 TN pain free years, minus 2 months. I couldn’t believe when the pain started again…I thought no, this can’t be happening again!! I am telling you this MVD info to encourage you if you have a better immune system than I have. You would be a good candidate for a 10 year success rate and your recovery would be much faster than mine was!!! Just food for thought.
The only medication I am on is clonazepam .I have been on a myriad of meds but the side effects have sent me to bed for about a week and twice to hospital.I am managing the pain as best as I can and am awaiting a neurologists appointment.The clonazepam is frowned upon here in the UK but it has been a life saver for me as far as sleep is concerned,without it I wake up in pain and stay awake.I take .50mg before bed.I am left slightly hung over but it doesn’t bother me at all.I do not take this med in the day as I need to function well.
Eileen, thank you for your reply. I am glad clonazepam is bringing you relief while you wait for your neurologist appointment.
Have you tried any procedures?
Yes bubbie3 I have had nerve blocks and Botox .I am afraid to have an MVD as I suffer from ATN.My biggest relief was from Pregabalin at 300mg twice a day.I called it my miracle drug but had to come off it as the side effects at this dosage were not tolerable and less it didn’t work.You have been through the mill with your health but to get four years pain free from the MVD must have been brilliant!Sods law it came back! My sympathies to you…you are very brave.All the best!