Gabapentin :: For Trigeminal Neuropathic Pain - My Experience
Jan 20, 2016
I have been on gabapentin for about 5 years. I have suffered from trigeminal neuropathic pain since a botched dental operation in 2003 and have tried a range of different medication that made me feel either spaced out, dizzy and sick or made no difference what so ever. Finally the pain clinic at Pontefract Hospital prescribed a combination of Gabapentin, citalopram and pain relief, zomorph. I can honestly say that it has saved my life. The pain had been so unbearable that I just couldn't see an end to it.
I take from 600g up to 2400g per day when the pain is at its worst. My memory has been affected but is nowhere near as bad as when on other similar medication. I do think it's like anything else in that people react to it in different ways and if it doesn't suit change it. During the summer, the pain recedes and I have gone on for days without any gabapentin and have suffered no withdrawal effects at all. Although I am not pain free, and I know that is never going to happen, the gabapentin makes it bearable.
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been taking this medication since September 2011 as i was having back surgery in the December.. looking back on it all now i have been severely depressed but haven't realised until now... i want to come off them without a visit to my doctor & was wondering if anyone knows the safest way to do this
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I was prescribed Gabapentin for fibromyalgia like pain - neuropathic pain. About 90 mins after taking one 300mg capsule I was experiencing some strong side effects. My spatial sense was distorted - I seemed bigger or smaller than I usually experience myself. I kept hearing indistinct voices - whole sentences in voices I did not recognise. I felt intense nausea. At one point I caught sight of my face in a mirror and had the feeling that the image was somehow independent of me, and that the face there was malevolent, and I was unable to break away for several minutes despite quite strong fear. I went to bed and as I lay there I felt like I was not quite in my body - lying beside myself somehow. My mind was caught up for a while in a series of incredibly violent and distressing daydream-like images over which I seemed to have little control. My body twitched and convulsed irregularly - although I've experienced this with intense anxiety and at this point I was really quite afraid! I woke early after a fitful sleep with an intense headache - behind the forehead, temples and also pain in my neck. Also some nausea. The headache lasted all day and into the night. It felt on a par with a moderately bad migraine (maybe 7 out of 10). I was unable to do much of anything except lie down and wait for it to pass (pain killers had no discernible effect on the level of pain).
That was one pill of 300mg. And needless to say I won't be taking another, let alone the prescribed 3 a day!
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does anyone take both Tegretol and Lyrica together for TN?
My Neurologist does not want me to take more Tegretol because it does not go well with the Warfarin i have to take for my artificial heart valve. He has suggested that if i get pain breakthroughs consistently i can add Lyrica. GP seems sceptical but i am sure that's what he said to me.
I dont think Lyrica alone would be a good idea as it seems to have a lot of nasty side effects.
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I'm going to tell my story so it will be kind of long, but has a great end ing..promise;-). In 2011, at age 29, I noticed a sharp pain when I brushed my teeth. At the time, like many others, I assumed it was dental related. I went to the dentist and they found nothing wrong. As the weeks went on, the pain started happening when I talked, brushed, washed my face, clenched my teeth, slept, smiled, if the wind blew hard, etc. It was the WORST pain of my life. It felt like an electric shock going off in my the left side of my face by my jaw. Sometimes the pain would be just a quick stab, and other times the pain would vibrate through my face and all I could do was stop all motion and wait until it passed. I would even wake up out of my sleep sometimes from the pain if I accidentally turned on my left side. The pain would last for weeks then go away for a week and I thought it was over. BIG MISTAKE! It came back with a vengeance.
After many painful days and nights, I started looking up my symptoms on the internet (yeah for Google) and the same diagnosis kept coming up..Trigeminal Neuralgia. I was confused because although my symptoms matched, it said that this disease usually showed itself in older individuals and I was only 29. I made an appointment with my physician and after cruelly poking my facing with his finger after I told him my symptoms, he confirmed that although it was rare for my age, I had TN. He prescribed me a steroid prescription and sent me on my way. No further explanation. If I had not already researched this, I would have been lost. So I took the pills, and besides making me gain a couple pounds, the pain remained. By now, I had researched so much about TN, I felt like an expert. I called my physician and asked to be referred to a Neurologist.
Long story short on this part, Before the Neurologist saw me , he sent me to get MRI which was clean so no MS and he spent all of three minutes seeing me, told me I had TN, gave me a prescription for TEGRETOL, and sent me on my way. No further explanation about my disease. He failed to tell me that the Tegretol would make me CRAZY!!!!!!!!! I am a teacher and the Tegretol had me so nuts, some days I couldn't even function. I have a 2 1/2 yr old and between the Tegretol and pain, I'm sure I was a pain for my child.
The Tegretol did help a little but I could not see myself having to live the rest of my life on Tegretol. It would have been HELL!!! I had already researched Gamma Ray treatment and surgery to cut skull open and put something in between nerve and blood vessel. Both did not appeal to me.
THIS IS WHEN IT GETS GOOD!!! I live in Alabama (US) and one day when I was researching, I saw that a Neurosurgeon in Birmingham, AL, Dr. Swaid N. Swaid does something called CYBERKNIFE TREATMENT. CYBERKNIFE is a non invasive radio surgery that is used to treat everything from cancerous and non cancerous tumors and TRIGEMINAL NEURALGIA!!! It beams a high dose of radiation to the area that precisely goes to the spot needed. I felt like this was my only hope. I called to make an appointment and luckily, a referral was not needed since my Dr. and Neurologist were of no help. I went to see Dr. Swaid the next month and he was the first Dr. to sit down and explain exactly what I had and the treatment options. Because of my age, he thought the brain surgery was better but I told him that I would rather do the Cyberknife. The brain surgery, besides be invasive, would make me have to take 2-3 weeks to recuperate while Cyberknife, I would go into treatment 1-5 times, depending on my xray of my nerves and lay on the table for 45 minutes and left the robot do it's thing and get up and be just fine. No pain, no cutting!
Made my appointment for Cyberknife, went in to talk to Radiologist who told me Cyberknife was just as good as the invasive method. He actually drew me a picture to describe what was going on in my face and told me that I was suffering from Trigeminal Neuralgia in my 3rd trigeminal nerve (the one by the lower jawline). After they looked at my
Xray, they decided I only needed one treatment. They made a mold of my face that is like a net they had to put on my face to keep me prefectly still. I laid on the table, listened to the music of my choice, and listened to the robotic arm buzz over my face for @ 40 minutes. Got up and was on my way. I was warned that the results would not be
immediate. The radiation slowly kills the nerve that is being affected. But month after month, sure enough, the pain became less and less. I went to see Dr. Swaid every 3 month for the next 9 months. He said by the 6th month, if the pain was gone, most likely it would be gone forever. The only side effect I have is that sometimes when I chew on that side of my face, because the nerve was killed, I get a little painless tightening in my jaw (like lock jaw) for a few seconds. I laugh because I'll take that anyday over TN and it only happens usually when I chew something really tough on that side
I have been pain free for about a year now but I'll never forget the worst part of my life. I encourage anyone dealing with TN TO DO YOUR RESEARCH and do what is best for you. If you have a Hospital that offers Cyberknife in your area, I encourage you to look into it. Never give up hope that you can't overcome this and know that there are others that have had to deal with this too....You DO NOT have to settle for taking medication for this disease for the rest of your life! RESEARCH, RESEARCH RESEARCH. God Bless!
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I was diagnosed Trigeminal neuralgia last July and MRI has shown a vascular compression of the nerve as it leaves the brain. My question is, I was prescribed Carbamazepine originally and had an allergic reaction within 3 weeks so was put on Gabapentin. I'm taking 1600 mg a day at present and can go up to 2700mg a day. My memory seems to be suffering and I get various other side effects such as vertigo. Recently though my finger tips have been swelling, turning red and painful to touch, the last few days my ankle has double in size and is also red, and I'm getting areas on the soles of my feet that are large marble sized and very painful to walk on. I asked my pharmacist yesterday if these could be caused by Gabapentin and she said there is a possibility?
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I suffer with pain on the left side of my face in the form of tingling feeling in the lip, gum, tongue, nostril and eye. Have been on amitriptlyne for a while and then on gabapentine and pregabalin but the last two gave me awful side effects so have come off them and just taking painkillers at the moment, but they don't do much at all. Has anyone tried a Tens Machine?
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I was diagnosed 10 weeks ago with shingles and unfortunately it was on my head, forehead and around my eye, which was very painful and uncomfortable, My vision is ok but I keep getting a very sore and pink eye, and have been told at the eye clinic that it is dry eye and I now have the same type of drops that I was given weeks ago. Has anyone else experienced sore itchy eyes so long after getting shingles and if so, any idea how long it lasts? my eye gets SO itchy and sometimes I have to rub it which I suppose is just making it worse!! There seems to be nothing i can put on my eyelid to stop the awful itching
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I am just coming off of Amitriptyline 50mg which I have been taking for 5 years nightly for hormonal migraine. I have a prescription for 300mg of Gabapentin and wondered what experience others have had with Gabapentin. Did it help? Have you put on weight with it? Does it make you fatigued or drowsy? would love to hear your experiences.
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I was diagnosed with peripheral polyneuropathy 11 years ago. I take 300mg lyrica/day 60mg duloxetine/day and now they want me to take an opiate nucynta to manage my pain since I have trouble with pain. I live in California and recently got my MM license and obtained some Charlotte's web which is suppose to help with pain. Helps a little but pain killers work better. A friend of mine had me smoke some pot by way of vaporizing and it actually took my pain spike away for about 5 hours. Has anyone experienced this before? I'm afraid of what vaporizing cannabis could do to my health. However I feel like I actually have found a way to reduce my intake of meds and much more affordable.
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I had to wean off Lexapro due to severe side effects and it made my anxiety and fear so bad I couldn't go to the store. I was on a few other SSRI's with no luck. I was on Zoloft for 12 years and it was my life saver. It eventually stopped working 2 years ago. So my Dr put me on Xanax .5 mg 3 times a day and 1 mg before bed. My sleep was still pretty bad 4-5 hours a night so he put me on gabapentin only at night. Then he decided to try it during the day, 100 mg in the am and afternoon. I have to stagger the Xanax or I'm just a zombie ( yet I still can't nap during the day) well now I'm getting terrible depression and break through anxiety even with the Xanax. It seemed to work maybe for a week but now not so much. I can't imagine after only two weeks my body would be used to the Xanax already. He said he would eventually start to wean me off the Xanax and totally on the gabapentin. But the terrible depression is making my anxiety worse. Anyone else have these kind of issues with this med?
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I've suffered with chronic pain in groin area for over 2years now after a few tests and Mri exam my specialist Dr Chawla told me there's no cure for Neuropathy besides help with medication and pain clinic. None of the painkillers have worked, bad time with side effects! I recently had Acupuncture with Gp only for the pain to spread all over body.
I have had no help and as single parent to 2 children this puts a strain on my depression. I don't want this to take over my life.
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I have been prescribed Amitriptyline for neuropathic pain, after Keppra did not suit me. The pain seems to be derived from a back injury, but a neurologist Thinks an antidepressant drug will help. The pain has been suppressed, but the side effects are a problem, like extreme tiredness and today dizziness when I was driving. Anyone had a similar problem and is it worth sticking with.
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Has anyone of you used this drug for symptoms of fibro? If so did it help? I read weight gain can be a side effect.
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I'm not sure Wat it is I have I have numbness in both feet and lower legs but my knees are in constant pain and buckle on random occasions or if I try and jog/run at the start of this I was detoxin of of alcohol addiction and that's when it started i've had and mri of my head and back bloods etc and all seems OK so it's leaving me and doctors scratching their heads?
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I had foot surgery 8 weeks ago - quite a major reconstruction that took a few hours.
when the plaster was removed at 6 weeks I was told that I had nerve damage causing partial foot drop and a lot of numbness and pain. I have just had nerve conduction studies and have started on Gabapentin and physio..
They said either the tourniquet or nerve block has caused it. I can't believe that this can happen, surely they know about these nerves and how to prevent problems.
Has anyone else experienced this and what has the recovery been like. I'm just wondering what my life is going to be like from now on.
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I was diagnosed with shingles in my forehead and eye 6 weeks ago,( the worst kind!!) and after weeks of discomfort with eye and forehead re-infecting, watering eye, headaches , itching etc, I now feel better in myself and my vision is ok, but unfortunately I have had complications ands am left with such painful neuralgia, my head hurts just to touch it and my temple is so tender, I have been told that this can go on for months or longer.
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For the past couple months I have a sharp pain that comes and goes throughout the day. I live off Motrin just to keep myself sane. I get intense jabs in my jaw, ear, eye area and sometimes my head. Does this sound like TN? I don't really have a trigger or anything. Sometimes the pain is so awful I have to hide under a blanket and just try to take a nap til it passes. Other times (like now) the pain is dull but the jabs are still painful. Anyone experience this?
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I know we're all different but due to neck/shoulder/arm/face pain with radiating pain to my arms at times I was previously prescribed pregabalin, that gave me heart palps and rls, now tried gabapentin and I think I had some sort of adverse reaction to it as my side effects were quite severe so I'm wondering where to go from here re meds. I've tried amitriptyline but not for long however the short time I took it it did nothing. Was thinking of trying nortriptyline as an alternative as read side effects not so bad.
Does anyone have any experience with Any of these 4 drugs or an alternative and if you've tried nortriptyline how well it did work vs it's side effects.
Or if anyone has found a miracle drug please let me know. I think key for me is muscle relaxation and nerve burning reduction.
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I finally got a GP to take some notice of the pain levels and I'm now on gabapentin and zapain while I await a referral.
I was so glad to be given *something* I didn't really bother asking too much. I understand the zapain is a straight up pain killer but I'm a little unsure - even after reading up - what to expect of the gabapentin?
is it also a pain killer? I'm on 900mg / day now and although I have pain constantly, I can't be sure which drug is more (or less) effective, if at all?
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I have been taking Fluoxetine (Prozac) for nearly 7 years and will shortly be taking Gabapentin capsules (opened cos i cannot swallow capsules) for 2 weeks at 300 mg (once a day), then 2 weeks at 600mg (twice a day) and then 900 mg (3 times a day). My nervous system is shot meaning that my body produces too many chemicals making the slightest nerve pain excruciating. Also have a trapped nerve in my foot which means exercise is limited. Is it best to start taking these in the morning? By week 5 i will be taking them 3 times a day. Is it advisable to take them at roughly the same time of day?
I don't work fortunately so if i get any bad reactions i can deal with them at home.
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