diamazepam......what next?

As you know ive been having a dreadful time with not just fibro but also trigneminal neuralgia. My sainted gp gave me amitripletine (Spelt that wrong i think) amd diamazepam for when the pain is really bad (which is now most of the time). Ihe has only been giving me 15 diamazepam at a time and im not taking them whrn im in agony cos i want to have some and dont want to run out, but they dont really don much for the pain anyway! Im going to ring docs tomorrow and see what they can do to help as i cant live like this and its not fair on my family either.

Does anyone know of any pain meds that can help with trigneminal neuralgia please??

6 Replies

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  • Dear Charlii,

    I sympathise with you as I know how painful this can be.

    Here is a link to NHS Choices regarding Trigeminal Neuralgia & it's treatments:

    nhs.uk/Conditions/Trigemina...

    I wonder have you tried either of the prescribed medications Carbamazepine or Gabapentin as mentioned by NHS choices ?

    I hope you are able to get relief soon

    Best Wishes

    Emma

  • It would probably be a good idea to get a referral to your local pain management clinic, as they will be more experienced in treating this. Maybe ask your GP for a referral if they're not confident in treating it.

    If you contact your local Neurological Alliance, they may also be able to put you in touch with another local sufferer, who may be more experienced in managing this. I know quite a few people with MS get TN as well.

    neural.org.uk/directory-of-...

  • In my experience as a patient whom has suffered severe, disabling neuralgia for 8 years, and whom has tested over 20 medications (that I can recall) I would recommend the following general treatment of symptoms. I've recommended this combo to other patients whom I know through support groups, and the consensus is that this defintely significantly decreases neuralgia. Sometimes the treatment isn't a goer because of unacceptable side effects.

    This should definetly be discussed with your doctor though, as some of the medications are contra-indicated for common reasons (such as impaired liver function, or depression).

    Step 1 to try is:

    * Amiltryptaline once nightly (as you mention you are trying), to try to lower the intensity of the nerve pain.

    * Lyrica once nightly OR gabapentin 3 times a day for same reason as above.

    * Quick-acting weak opiate such as 2 30mg codeine tablesto use as needed when pain is causing distress (i.e. pain is at a level that means you are going to the bed in the middle of the day and closing your eyes trying to "escape it", or when it is causing a significant emotional response (i.e. you feel like crying.).

    If this combonation isn't working.

    Step 2

    * Amiltryptaline.

    * Lyrica once nightly OR Gabapentin.

    * Long-acting medium opiate (i.e. a buprenorphine patch). These are very good for nerve pain, google BuTrans or Norspan for examples. This DRASTICALLY lowered my nerve pain levels and frequency.

    * Quick acting opiate, such as 10mg morphine tables or 5mg Oxycodone tablets for when pain is causing distress. Take tablet, wait 30 minutes and if pain isn't under control take another.

    These combinations fight nerve pain on a number of different levels, and as mentioned, should decrease it substantially. You sound like you are in a lot of pain, and as such the benefit of the pain releief these combo's can offer should grealty outwigh the side effects these combo's can cause.

    Best of luck,

    John

  • Please be aware that no-one online can really recommend a specific course of treatment, because it is impossible to know all the circumstances. Also, no treatments work on every patient.

  • Ouch John I am so glad I don't have this cos I am unable to take every med you mentioned . I am so thankful now I only have fibro and arthritis...

    VG x

  • Hi Charlii,

    Lots of good advice here, to which I can't add anything except my best wishes for your rapid improvement!

    I think the pain clinic sounds like a good idea if you can persuade your GP to refer you - they are the experts and see many cases of this comparatively unusual, but frighteningly painful condition.

    Hope you find a solution soon!

    love Moffy xxx

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