Greetings all…I am new to this site. Has anyone tried clonazepam (Klonopin) to manage the pain? I was taking it before my diagnosis (~2005), and I haven’t found anything quite as effective to date.
It is an anticonvulsant so it fits with what I’ve read online. Some doctors say it shouldn’t help with the pain so I have been questioning my diagnosis.
I am also curious about how others describe the pain. All I’ve had access to is the articles online, and it seems that the doctors are interpreting what they hear from patients and putting that into these articles. It would be nice to hear it from someone who actually lives with it.
I’ve had a hard time explaining the pain. I explain it this way:
People don’t stare into the sun because it hurts. Take that pain and magnify it 100 fold. That’s kind of what I feel in my throat.
Welcome Mike! Sounds like an rx I was on for a short time. Don't remember the side effects that I had, been through so many. I have pages and pages of print outs from my pharmacy so that I wouldn't try the same unsuccessful rx twice. I have changed pain management doctors and sought more qualified neurosurgeons throughout the years. You were diagnosed around the same time I was.
I am not sure why doctors would tell you that an anticonvulsant would not help? The last pain management put me on Cymbalta and my neurosurgeon wondered why that? Complete waist of time, needed anticonvulsant. You are in New Rochelle. Consider a trip to NYC Columbia or St. Lukes for a consult, then have a pain management doctor near you maintain the program. That is what I did and found it to be successful. My local doctor kept in touch and sought advise from the "specialist".
I describe the pain (in my tongue) as severed, electric shock like, excruciating short bursts that distort my face and clench my teeth and fists. It is referred to as the suicide disease. You probably already know that.
Hi Donna,
Thanks for the reply. That list is a great idea. My first doc kept records of the meds I tried. I should have kept my own list.
Klonopin has been working. I haven’t felt any intense pain for years now. The Long term side effects are unknown and without the meds I feel terrible…foggy, lathargic, and anxiety…even for a day w/o. So, I gotta decide to live with the klonopin and all of it’s baggage or go back and try something less harmful and go through that pain and doc hunting again. Klonopin wins for now.
If it’s not too much trouble and you still have the info or notes I’m very interested in your experiences with clonazepam. Effectiveness as well as any side effects.
Good luck with your MVD and your recovery. May it go smooth and pain free.
Donna said:
Welcome Mike! Sounds like an rx I was on for a short time. Don’t remember the side effects that I had, been through so many. I have pages and pages of print outs from my pharmacy so that I wouldn’t try the same unsuccessful rx twice. I have changed pain management doctors and sought more qualified neurosurgeons throughout the years. You were diagnosed around the same time I was.
I am not sure why doctors would tell you that an anticonvulsant would not help? The last pain management put me on Cymbalta and my neurosurgeon wondered why that? Complete waist of time, needed anticonvulsant. You are in New Rochelle. Consider a trip to NYC Columbia or St. Lukes for a consult, then have a pain management doctor near you maintain the program. That is what I did and found it to be successful. My local doctor kept in touch and sought advise from the “specialist”.
I describe the pain (in my tongue) as severed, electric shock like, excruciating short bursts that distort my face and clench my teeth and fists. It is referred to as the suicide disease. You probably already know that.
My apologies. I was mistaken. It was clomipramine I was taking. It was 2007. I was having trouble sleeping, loss of interest in everything, and irritable. All that and still in pain. I was on it for 9 months, 25mg. Then switched to carbamazepine @ 200mg. Combined w Lyrica @ 200mg still pain.
Dear Mike. I understand your pain. Without any medicine at all, I would not eat, swallow, talk, or almost not breathe. I do have horrific pain in my throat. The medicine takes the edge off and a little more. I always have to ask the doctor to look at my throat because I do not know if I have strep throat or not. I have been taking clonazepam for a long time. Years. I have seizures so I take it for that, pain, and anxiety. The medicine I find to work the best is nortripyline. I have taken this medicine for years. It works the best for me. I take other drugs for other issues so it is hard to know what really works the best. I think different medicines work different on different people. Sometimes a person has to try drugs until they get to a point where the medicine can help them. Good luck to you. Jenelle
I've had GPN for nearly 30 years with many periods of remission. Tegretol is the only med that works for me--haven't tried clonazepam.
My pain is stabbing sharp pain starting behind the left tonsil radiating into my left ear and sometimes down my throat. The attacks last about a minute and are excuciating--watering eyes, can't talk, face turns red... I often say that on a scale of one to ten, this can be an 11. I may have 100 of them a day or just a few. Severity can vary and I have been in remission for as long as a year--usually shorter though. I'm currently jumping in and out of remission which makes it tolerable.
Hi Jenelle,
Thank you for your reply. I have been pain free from GN for years now. Reading some of the stories on this site I agree that different meds work for different people. I am fortunate to have found clonazepam. I looked up nortripyline. I dunno if you saw this - "Recently (2010), an evidence-based guideline sponsored by the International Association for the Study of Pain recommends nortriptyline as a first-line medication for neuropathic pain." - Wikipedia.
I wish all the best for you,
Mike
Jenelle Zamyslowski said:
Dear Mike. I understand your pain. Without any medicine at all, I would not eat, swallow, talk, or almost not breathe. I do have horrific pain in my throat. The medicine takes the edge off and a little more. I always have to ask the doctor to look at my throat because I do not know if I have strep throat or not. I have been taking clonazepam for a long time. Years. I have seizures so I take it for that, pain, and anxiety. The medicine I find to work the best is nortripyline. I have taken this medicine for years. It works the best for me. I take other drugs for other issues so it is hard to know what really works the best. I think different medicines work different on different people. Sometimes a person has to try drugs until they get to a point where the medicine can help them. Good luck to you. Jenelle
Hi Bill.
Tegretol (carbamazepine) seems similar to clonazepam. I’m glad you found something. It’s interesting that you say the pain is an 11 out of 10. On the flip side, I have been asked the question “how bad is the pain on a scale of 1 to 10, 10 being the worst?” for other injuries and what not. I have to disregard the GN pain when answering, as a broken wrist is no longer an 8 but more like a 5. I guess tolerance to other pain is the the only semi good to come out of GN. Except for those instances where the physical pain from an injury is a trigger.
Is tegretol something that is taken for pain prevention, so on a regular basis or only to numb the pain during an attack, like aspirin for a headache?
Thank you for the reply. All the best to you!
Bill said:
Mike,
I've had GPN for nearly 30 years with many periods of remission. Tegretol is the only med that works for me--haven't tried clonazepam.
My pain is stabbing sharp pain starting behind the left tonsil radiating into my left ear and sometimes down my throat. The attacks last about a minute and are excuciating--watering eyes, can't talk, face turns red... I often say that on a scale of one to ten, this can be an 11. I may have 100 of them a day or just a few. Severity can vary and I have been in remission for as long as a year--usually shorter though. I'm currently jumping in and out of remission which makes it tolerable.
My throat pain feels like the beginnings of a sore throat and then turns into what feels like a lit match in two or three spots. I have found myself even moving my tongue to the other side of my mouth trying to not "touch" the sore spots. Even though the spots are just under my ear, in my ear and down in my throat. This is a terrible thing.
Hello. Yes, I feel the same way. I take clonazepam for seizures and sleep. I have found that it does not work on neuralgia for me. But, at the same time, how would I know because I take alot of medicine for other issues. Nortriptyline works the best for me. I still have breakthrough pain, but not as severe. As I said to someone else who just joined the group, you have a nice group of people to help and the most important, you are not alone. I think the not alone helps me. There was no one who understood what I was going through. They thought I was crazy, because the tests came back normal. Getting the right medicine can be a challenge. Just hang in there. Take suggestions from the others who post. I hope this help a little.
Hi...Thank you for your reply. I wish clonazepam worked for you. I never had any ear related pain - just tongue and throat. After trying so many meds I landed on klonopin which I've been taking for many years at a high dosage (4mg/day). I read your post. In a lot of cases I can't remember what year I saw who and what I was prescribed. You keep amazing records. Very smart. Keep it up. It sounds like your on your way to better days.
WotV said:
I was taking it before diagnosis and it sure wasn't helping.
My pain feels like a stabbing pain in my ear that travels down the side of my tongue into my neck.
You guys are great to talk to, thank you so much for your kind words. I get very tired of saying that I hurt. My husband and kids are very supportive, but I feel like I am such a downer all the time! Tegretol makes me dizzy and dopey but works well when it works. I have to cycle out of it at times. I get so tired of going to the dr. Anyone else? I am thinking of MVD but that seems so scary.
I take clonazepam which is also a controlled substance, so I have to go to the doctor to get my prescription. It is a bit frustrating, as I live and work about an hour from my doctor. I don't know if that is what you were referring to when you wrote you are tired of going to the doctor, but if it is I have found a couple of solutions. My current doc gives me 2 or 3 prescriptions all post dated so I only see him every 2 or 3 months. My previous doctor would send the prescription in the mail. If that is an issue for you may want to see if your doc is willing.
I saw your post about the tegretol. I know that different meds work differently for everyone. Obviously if the klonopin didn't help your pain before you were diagnosed it wouldn't help now. The thing is that it works so well for me...I am 100% pain free. Occasionally I choke on water and I get a small shock in my throat, but nothing compared to before.
Anyway, if you don't mind and you remember...what was the dosage you were taking?
WotV said:
I was taking it before diagnosis and it sure wasn't helping.
My pain feels like a stabbing pain in my ear that travels down the side of my tongue into my neck.