Hi, I'm a newbie and thought I'd tell you about my story.......
I've had my diagnosis of atypical TN after paying privately for a CT and MRI scan. I've been been putting my pain down to severe sinusitus for years, trotting into my GP getting a stack of antibiotics and trotting off. My pain got so bad last year that I spent half of my holiday in bed as I was in so much pain as well as feeling very giddy. This lasted for four months and I suffered not only with the pain but with depression and severe fatigue. My GP told me that it seemed to be menieres disease. I was given medication which seemed to concide with the end of the attack.
It came back again this year and I sought advice straight away as I knew I couldn't cope with the pain again. I'm a 36 year old married woman with a very active 2.5 year old and a Finance Manager. Last year brought me to my knees and most evenings I was asleep by 7.30pm being totally exhausted. I saw my GP this year and after doing plenty of research I told him that I was 95% certain that I was suffering with TN.
After seeing a consultant I was greatly relieved to get some proper advice followed by a CT and MRI. I was put on Amitriptyline straight away and am currently taking 40mg at night. In the last few days the burning pain has become terrible again and the current dose is just not doing anything. The pain is located across my face and in my teeth. My face feels as if someone is crushing it!
After discovering this wonderful group I finally got some information about the pain relief on offer and I trotted down to my GP this evening and am now on Gabapentin as well as the Amitriptyline.
Is anyone else on this combination and how effective is it for you?
Thanks all!
Nicky
I've seen mention of this combination from a few other patients here, as well as reading papers on double-blind testing of the combination. The two medications together definitely provide better pain management for ATN than either one alone.
FYI (from rxlist.com) the common prescription for Amitriptyline is 75-150 mg/day in divided doses when used specifically against depression. So you've got some room to experiment with the guidance of your doctor, concerning the trade-off between pain management and side effects.
I have continuous pain in my teeth, and the amitriptyline has helped more than any other medication. I started getting relief when I went up to 100mg/day. It doesn’t work right away, so hang in there and give it a few weeks. I hope it helps you.
Started the new regime last night and although the pain so far is less, I do feel quite dopey. I've been advised to start on 100mg, 200mg next week and so on. I've lowered the amitriptyline to 30mg to not overload myself straight off as I have such a low tolerance for medication. Even the non drowsy hayfever tablets make me sleepy!
Nicky, please be sure that your physician knows if you have unilaterally changed the dose levels you are using for medication he or she has prescribed. And be aware that initial sleepiness or dopiness may pass in a lot of patients as they acclimate to medication.
Regards, Red
Thanks for that Red. Today was a bit better but effects wore off around lunchtime. I've been advised by my GP to build up my dosage slowly to 300mg (Gabapentin) then have a review. I found that the dopiness did subside when I initially started taking Amitriptyline a few months ago and despite feeling slightly "spaced" this morning, it is liveable. Fortunately my GP is very nice and when I came armed with suggested drug combinations from this site, he was very interested and said that we could try whatever it took to get my pain management right. It's a major step forward to get an onside GP!
Again an FYI: the maximum recommended daily dose for Gabapentin is about 3600 mg. Unless you are hyper-sensitive to such meds, 300 mg per day would be a REALLY low dose, and one that many US neurologists would consider inadequate to remain in your bloodstream for more than a few hours at a time. The commentary on dose levels for a related form of facial pain (post herpetic neuralgia) at http://rxlist.com, is as follows:
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In adults with postherpetic neuralgia, Neurontin (gabapentin) therapy may be initiated as a single 300-mg dose on Day 1, 600 mg/day on Day 2 (divided BID), and 900 mg/day on Day 3 (divided TID). The dose can subsequently be titrated up as needed for pain relief to a daily dose of 1800 mg (divided TID). In clinical studies, efficacy was demonstrated over a range of doses from 1800 mg/day to 3600 mg/day with comparable effects across the dose range. Additional benefit of using doses greater than 1800 mg/day was not demonstrated.
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My spouse is one of those for whom the side effects of this drug are minimal. She's been able to manage a bilateral mixture of TN and ATN for years on a divided dose of 2700 mg/day, without being sleepy or losing her mental focus. The pain is never completely gone, but Neurontin chops off the top of the iceberg and allows her to function well, despite a low level of background pain.
I must admit that I do not fully understand the ins and outs of the NHS system in the UK. But most of the people I've talked to from your part of the world voice strong reservations concerning the levels of training and familiarity with TN displayed by anyone other than a specialist neurologist in that system.
Best wishes,
Red
My goodness my dose is so low then! I have no idea why he would prescribe such low levels, that just seems daft! In his defense he is a GP but still should know the required dosage for a TN sufferer. No wonder it's not touching the sides!
Thanks for the info Red!
Hi Nicky,
I was prescribed Amitriptyline, but it made me so groggy I couldn't function even on the lowest of doses (10 mgs.). I'm currently on 2700 mgs. of Gabapentin/Neurontin (900 mg three times a day) and Hydrocodone 7.5 which has helped a lot. Don't be afraid of asking for pain medications because for us chronic pain patients we don't get a "high" from pain meds. It just helps and deals with the pain.
It sounds like you need to see a neurologist. GP's aren't very well trained on facial pain and I wouldn't count on the fact that he "should" know the required doseage for a TN patient. Most GP's never treat a TN patient. Although my GP was vaguely familiar with TN, he had never heard of Atypical TN until I insisted I had it. He then referred me to a neurologist and neurosurgeon, both of whom validated my suspicions. That's when I finally got on the right medications and started getting relief.
Good Luck and keep us posted on your progress.