Gabapentin help please

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1

Ok here is the story short version. I had tonsil cancer. tonsil removed and 31 tomo radiation treatments done. I had pain since the treatments ended. (sorry my comp is going crazy) I finally went to see a pain specialist and was told that I had a damaged glossalpharyngeal nerve. Long story about adjusting pain meds. While I was on gabapentin I went back to work only to have severe stabbing pain in my throat that radiated thru my ear. I was told by otolaryncologist that I needed to give it time to adjust. My throat he meant. So I did I worked in severe pain from mid Sept to beginning of Dec. I went back to pain specialist and he told me that maybe I should not be working. I had to up the gabapentin to 400 3 times a day. Now that may not be much for some of you but it killed me. I was in complete lala land and could not function. My current dose is 200 200 and 300 when I go any further up I get headaches and feel like I am drunk. I was told by one of the pain drs that he thinks maybe I have some type of allergy to the med. Anyway even though I am on this med any extra bit of talking that i do affects the pain level and eating talking coughing hot or cold things bother my throat and ear. I woke this am and coughed a couple of times now I have ear pain. So here is my question from you guys the experts. Does gabapentin continue to work at the same dose or do I need to increase level to continue to get some relief? Also I am scheduled in a week for a nerve block thru my nose with a qtip and lidocain I believe is what they said. If all my pain is in my throat and ear will going thru my nose stop it or will this need to be done thru my throat to get to the nerve that is damaged.

Please I need advice I am going crazy from this pain that doesnt seem to be going away with the gabapentin.

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I am so sorry you are miserable, most of us can relate.....I tried the gabapentin too, it didn't work for me either....no pain relief and only side effects....I just returned from a 5 hour drive to see a new neurosurgeon....he told me that the meds mostly dont work, its just something to try for and hope......he said he doesn't prescribe those meds for GPN...and GPN is listed as one of his specialities so I assumed he knows what he was talking about. I was told I could do surgery....but other than that, he doesn't recommend the meds....I also tried nortriptlyne with no effect....

May I ask how you discovered tonsillar cancer? I am always so paranoid for myself that they are missing something more....

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First of all I am sorry for your pain.

I take Gabapentin. I take it when the pain starts and go off it when the pain quits. I have it bilateral and sometimes in my ears. Can your Dr. add another medication? Sometimes a low dose plus another drug helps.

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I am so sorry you have this pain. I recently had gabapentin increased to the maximum dose 900 mg four times a day (3,600mg). I’ve needed to stay home and very quiet to there and still am at only 3,200. It takes a while to adjust. I get a feeling of carbonation in my brain but that subsides after a while. I know it helps somewhat because if I forget by an hour or so, the pain rears up like crazy. The downside is that I sort of drift and have to continually say to myself “what do I do next”. By the evening though, if I have been talking or eating much, there is just a steady state of pain. I also have TN and am also waiting to see a neurosurgeon. I live in Canada. Our system is free but slow. I think being on the meds is quite a bit about waiting until a person just can’t stand it anymore. I also add tramacet (or tramadol) in the afternoon. It takes the edge off. I could not possibly go out to work so I don’t know how you do it. I hope the nerve block works.

5

Hi

I've had GPN for about 4.5 years. I was started on Gabapentin in the beginning. It was not effective enough.

I was switched to Lyrica (Pregabalin). Lyrica is a very nasty drug, and difficult to take. It took about a year to get used to it, and I still couldn't stand it for another year and a half after that. I begged the Dr.'s to get me off of it for 2-1/2 years. I'm used to it now, and still wish I did't have to take it. It does bring me relief. 150mg x 2 per day, wasn't cutting it, and the Dr.'s were hesitant to increase that dose. I'm on 450 mg of Lyrica a day now, and as long as I stick to the Dose schedule, I'm ok. If you go past your dose time, you could find the level of Pain increase, and you could feel withdrawl type symptoms. Once that happens your regular Dose might not feel very effective. Its important to not let that happen! They recently tried to switch me back to Gabapentin. It's barely effective. During the period of time I was weaning off Lyrica, on to Gabapentin, the Gabapentin wasn't slowing my Brain activity (thats how these anti-siezure drugs work) enough. My mind would race while trying to sleep, and I had potentially dangerous sleep walking, which isn't normal for me. As soon as I figured that out, and put myself (with the Dr.'s) back on Lyrica. Sleepwalking stopped immediatly!

Like I said, It's a very nasty drug, I wish I didn't have to take it, but it most definitly brings me pretty effective relief. There are days, that the level of pain is so great, that the regular dose just doesn't cut it.For me, when that happens, I just take another.

You HAVE to be VERY careful with this drug! Your dependency will increase! You'll have to find that Dose sweet spot, and learn to live with a small degree of pain.

My Dr who is a clinical Pharacologist, shook my hand when I told him I was on Lyrica. He said of all the people he has administered to, only 2 people could take it. I'm the 2nd person. I've talked to others, who have tried it, who expressed that the side effects were so terrible, they immediatly stopped taking it.

Do some Google research, and talk to your doctor, to find what's best for you. You DO have to give the drug some time to stablize, and time for you to get used to it. I don't like it, but it's effective, and I couldn't possibly deal with the intense pain of Neuralgia, without it.

I hope this helps.

Ed

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I have been on gabapentin for about 2 1/2 yrs. the dose goes up and down depending on my pain level. I tried another med forgot the name but I got off it because thing swere going wacky in my brain one day I drove out to breakfast with my family after we were done I looked for my keys only to find them in the car with the car still running. I do laugh now but I was scared to death at the time. Anyway my tonsil cancer was found by a lump on the side of my neck never thought it was cancer I was told it was reactive lymph node. Haha it turned into a lymph mode full of squamous cell carcinoma. I did have biopsy done and came back normal and then went wacky one day. Bam I have cancer. Anyway either radiation or the tonsillectomy destroyed my nerve. I tried to go back to work and the pain from talking is unbearable. Even when my daughter has a week off of school I find myself trying to increase the meds just to compensate for the extra pain that I feel from the extra talking I have to do. After a summer I am at my wits end with pain and someways can’t wait for school to start again. I was never like that I always wanted my daughter home with me instead of school.

So I just want to make sure that I am not going crazy and that the upping of gabapentin is normal or not. I was told that the next step is a nerve block. I just never thought that it would be starting thru my nose but that is supposed to be where the nerve ends. If that doesn’t work then they will do it in my throat. I was told I will be shown how to do it myself so that I don’t have to keep going back to the pain specialist. Atop and lidocaine I believe is what they will do.

I am just getting done with one of the trimonthly pain spikes and today I am tired from fighting the pain. Yesterday I just wanted to rip out all my molars Today is better pain wise but very tired.

7

I think about this all the time. I have M.S. symptoms, neurologist diagnosed bilateral trigeminal neuralgia and now these symptoms. I have the pain left side starting September and now starting on the right side. I have had the trigeminal neuralgia for 18 years. Neuralgias are progressive, we know that. My pains come and go, and for the last few years have been mild but I remember the awful pain, so I hit it with Gabapenten, which helps me. I am a RN, and I know it does not help a lot of people, same with Lyrica, which is popular these days. What do we do? The medical community doesn't have the answers. When I came to my family Dr., she said she had no idea. I guess learning from each other helps. I did volunteer work with the Trigeminal neuralgia Assoc., years ago and so many with G.N. wanted to die. Thats my big fear, that I will go bonkers. So far I am good! :)

8

I did a better job today with the timing of taking the gabapentin, thanks Ed for your heads up about the rearing up of the pain if you go to long. I like the way my brain feels when it is not medicated to have pushed it too far when I start to feel like myself. No break-through today, i finally got the whole 3,600 in. Also I haven’t talked to anyone. My family doc told me to adjust as needed and although its good to be given that kind of trust, when it comes right down to it, she does not have the experience and I’m learning to trust those who do. From what I understand pain begets pain, and it needs to be hit hard. Lyrica did nothing for me. Carbamazepine made me feel like I was living in a cave of death. We are all so individual in our chemistry and needs. One of my biggest fears is the fear of these big drugs. I think about this all the time too. I also fear the progression. Going bonkers is right up there too! I make a lot of art, mostly a concentrated drawing practice, which helps.
So sorry you have it both sides, Funtsie.

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I have just a few comments: after 18 years, and many medications and few very great doctors and a number of some serious harmful ones I have learned to caution others to take a step back and be sure before you do anything.

Has you doctor tried any other nerve type medications? Have they given you the basic Carbatrol? Ask them to try that for a few days first. Also would it be to your benefit to see a neurologist that treats Trigiminal Neuralgia since you describe some of the classic symptoms…yet those symptoms also could fit a mired of other syndromes I have no knowledge of. Make sure the doc that you pick treats TN not just face pain. There is a difference. Also note pain doctors do not know about TN and its treatment unless he is 1 in a million. Also run from any dentist who says they know about TN. They don’t any can compromise your health horribly . Something for you to read about latter if you have the need ( let us hope not).

So get a second opinion and try Carbatrol is my advice for you ASAP. I am not a doctor but I did stay at a Holiday Inn last month…ha, ha.

10

Also before I forget one of the oldest forms of treating TN nerve pain is doses of Valium and Vicodin. If these are tried on you and you get results it tells your doctor a lot.