Returning atn after 1 week stopping nortriptyline

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I've been on treatment for 15mnths for continuous atn tn and occipital neuralgia I had an unsuccessful nerve block to occipital area 5mnths ago, I was on 1600mg tegretolxr daily and 50mg nortriptyline I made a decision to try to reduce medication myself I don't trust gp and my neurologist appointments are few and far between anybody who takes these medication s understand s the impact they have upon you both mentally and physically, I reduced both medication over 3 wks approx and despite some spikes in pain and feeling very unwell I managed and felt my energy levels return after 2 wks today marks 2wk of no tegretolxr and 1 wk of no nortriptyline however since last night the familiar pains have returned and I've now a steady and continuous burning and stinging in front of both ears and in and around cheek and temple with extremely sensitive skin even to point of intolerance to slight breeze can anyone offer any advice or experience as to stopping their medication as I'm wondering if it's just my body adjusting still or because my body is drug free and the neuralgia s been dorment and waiting to return fully I've so far managed the pain and stabs and usually my flare ups last 3 days so I'm hoping this will only linger 3day s as I really don't wanna go down the medication road but I know I can only cope with this for so long before I give in god its such a battle

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  • Posted

    That sounds awful. Was it an MVD you had? Have you looked into the glycerol injection? I know if I've come off meds before the pain has fully subsided it comes back worse than before but I understand your struggle with meds. I am currently on 3600mcg of gabbapentin and it's a lot to take. I'm looking into MVD or glycerol injection as I can't take the meds anymore, surgeon is thinking this is the best route but consultant wants me to try a few more meds but they will always have different opinions I guess. You can try a good Accupuncturist, avoid potassium and try b vitamins but it might be you need to speak to your doctor about trying a new medication, you can often phone your neurologist btw, something different might work better for you. I feel your pain though, the physical and mental, going back on the meds is incredibly depressing. All the best to you x

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    • Posted

      Thanks it's such a struggle and torment I'm not sure what my neurologist may suggest next I have mentioned neurosurgeon opinion but she said the surgical procedures weigh heavy with risks 😖

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    • Posted

      Yes surgical does carry large risks always. I've had it 12 years now and it's becoming constantly worse and doesn't go away so for me it's time to look into it. Something a friend in America said to me who treats all kinds of facial pain conditions is that you need to been on enough medication, a cocktail if needed, to be in zero pain and to then stay on that for 6 months at least with no pain at all, not even a twinge and then you can very slowly come off and by doing that it gives the nerve time to calm down and it should go away for about 3 to 10 years. It was going to be my plan but after seeing the surgeon, just by chance as I'd googled neurologist and TN and he actually specialises in it so I made a private appointment, and he said for me it's looking like surgery is needed but surgeons and consultants will always think differently. But what this friend did say was that what I'd been told, by a different neurologist, 'to just take meds when in pain and come off when I'm not' meant I was coming off them too early and this was causing the nerve to be traumatised which is why it's become worse 😕 It would be really hard going being on so much meds that you were in no pain for that long but if it worked and took the pain away for a number of years it might be worth trying. Anyways that's just a lot of what I know from different sources if it's any help to you x

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  • Posted

    Sorry the pain is back. Unfortunately in my experience I've returned to meds after trying multiple failed procedures. Maybe there is a med or combo that has fewer negative effects for you? I'm mostly pain free and been on the same "cocktail" for a while. It is not the same as being med free but I've adjusted and feel pretty good. So hard to strike a balance - hang in there and hope for the best. I wish you well. (Cocktail = oxcarbazapine + baclofen+ norco)

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    • Posted

      On the meds I just feel like I'm barely functioning and not actually living my life I don't feel me it's like I'm disconnected I think since suffering with this daily pain and pains my pain threshold has heightened it's very sad and weird what you become accustomed to deal with I'm still hoping that this time tomorrow my 3 day flare will end and things won't get that bad enough for me to restart meds

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  • Posted

    Hi Vicky, sorry to hear your pain is back. I understand why you came off the meds because

    they can disrupt your life to the point where you are functioning but in a drug

    fuelled haze. I was taking 1600mg of Tegretol and up to 100mg of Amitriptyline. It

    took the edge off the pain but before the MVD it wasn't even doing that. It

    may be worth trying other combinations to see if they work better in smaller

    doses, if you haven't already done that. I had surgery 5 weeks ago and am off all

    meds and this last few days I do feel like I've got my life back again. It did

    seem to take a while before they were out of my system though. I really do

    hope that the 3 day pattern still works without the meds. There are risks with

    any surgery, but for me it was the only option because the meds were no longer

    working to control the pain. Given the choice between pain and meds versus MVD,

    I wouldn't hesitate to go down the surgery route again. Take care.

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    • Posted

      I think all meds are the same I tried gabapentin and I literally felt suicidal on that it's always been a worry that I'm continuing to poison my body which could lead to othe problems at a later stage when I'm also unsure as to whether continue at same dose or battle the reducing stages experiencing increased pain and drug withdrawal .I know from professional experience that drs very easily hand out pills before I got the neurologist diagnosis my gp refused to increase tegretol from 300mg daily and persistently tried to give me tramadol and oramorph well thank god for my knowledge as I would also have been addicted to these drugs which of course would not have touched the atn and occipital neuralgia drs are too quick to throw drugs st you

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