As the heading states im looking for people’s advice on reductions of meds. I have only had two flare ups of this TN so far. After the first one I gave up meds completely after the pain went away. Rooky mistake. My second attack came on slowly but was 5 times worse than the first. My doc advised that I start to reduce my medication if I find myself pain free for more than a few days at a time.
I have been taking 600 mg of lyrica an 50 mg of amitriptyline since the 31 of October. From the 3 rd to 15th I was pain free, had a bad day on the 15th of October but was only one day. Since then, till now I am pain free. Have had some tingling sensation in my cheek but nothing earth shattering.
So my question is, do I reduce the meds now and see how I go? Find out if this flare has ended? Knock 100 mg out of each day for a week to 500 mg? Then 400mg the following week?
My GP said that if I find myself pain free after reducing that this time I am to stay on a low amount of medication as a precaution for the next attack. This I’m more than willing to do, although I think I’m being optimistic in this front. First flare was bad, second one was near earth shattering, dreading the next one already and I’m not even sure this has ended or is just masked.
Thanks in advance for yer thoughts and experience on this front.
NB : those months are wrong. They should say I started this dose on 31st of November, and have been pain free since the 15 of December. Excuse my medicated state.
A thought about reducing pain meds: from reading patient commentary for almost 20 years, I believe most neurologists would advise you to stay with the dose that has helped you manage the pain unless side effects after 4-6 weeks are so severe that you can't tolerate the med. Trying to wean themselves down to lower or no pain med doses has been a consistent source of breakthrough pain in the great majority of patients whom I've heard discussing their desire to do so.
Thank you Red for your reply. I think I’ll stay with this a while longer. Start the new year pain free. Will approach it with my GP at a later date. Can I ask you, while you are here, in the last 20 years have you been able to see the way TN develops, does it really come more often and worse the older a person gets?
There are some TN patients who stabilize on a manageable dose of one of the anti-seizure or TCA meds. On balance, I'd say they aren't the majority among people I talk with. But those people ALSO tend to be among the less successful of chronic pain patients, so there is a self-selection bias working here. There are very few published long term follow-up studies of medication effects over periods of many years, so we have to recognize a real degree of ambiguity in outcomes. My wife may be one of the exceptions, for which we're both thankful. She's been stable on 2700 mg/day of Neurontin, with minimal side effects, for over 14 years. I've talked with others who couldn't tolerate this med at 1200 mg/day, and still others in whom the med (or others) became ineffective after a few months or years. There's no one size fits all pattern in chronic pain, Suzi. So we're left with a rule of thumb that might sound like a cliche even though it's true: People seem to do best who approach these disorders a day at a time. Flexibility and a refusal to catastrophize in advance are very helpful attitudes of mind.
