TN... Anyone else had it bad?

The last week I've been sedated twice by a&e.... They have put me on oramorph.... It's making me sick, all the time and totally wiping me out... Which I can't really do because I have two small children and an o/h that works away from home... I'm getting very depressed with the pain, and all the doctors want to do is fill me with meds... Basically this is a reach out to anyone with TN that's going through the same... I have other conditions too, but they are apparently unrelated... Hashimoto thyroiditis, thurasic outlet syndrome, scoliosis... All cause me pain in different ways as well as TN the true pain in the... Face! I'd just want support... Feeling a bit lost and alone really... I have a friend with fibro, she gets flare up days, but (and I don't want this to sound harsh) they don't put her in hospital like mine... TN seems to be controlling my life... And pretty much anything can trigger it.... 😢 I've had enogh really, and if it wasn't for my girls... I don't want to think of the consequences. Last weeks flare up had me smashing my face into the side of the hospital bed and I cracked my own cheek bone... Slightly bruised to say the least... I just want it to go away Trigeminal Neuralgia rules my life... Anyone got a get out for it??

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  • I was on oramorph when I was in hospital with sepsis.. it helped a but with pain I am not sure if it mad me feel sick as the sepsis did that by itself.. I do hope you feel better soon, you sound like you need mental support maybe ask the doctors if you can be referred to a counsellor whoc deals with people in severe pain all the time I am not sure if there are any but you sound in an anxious state so need help with that I think wishing you well xx

  • Oh you poor dear, sounds like your having a really rough time. Can the docs not give you something to help with the nausea? I take oramorph (and a handful of other drugs to help with managing crps) but luckily no bad side effects bar the usual constipation issues. I found trying to shift my focus helps - you mentioned you have two girls, do you have a partner around? When my pain flares get bad I sometimes put my headphones on and listen to music really loud - helps drown out the screaming in my head. I would suggest counselling too, with a chronic pain specialist counsellor, and definitely go back to docs and see about meds change or something to help side effects. Feel free to message anytime if you need someone to talk to.

    Amy.

  • Have they tried you on Carbamazepine. My TN doesn t sound as bad as yours but the Carbamazepine works most of the time. I don't like taking it as it makes me spaced out, dozey and queasy during the day. I didn't think morphine was supposed to be that effective with TN. Have you seen a Pain Management team or a TN specialist ?

    I wish you well with this horrible condition.

    Dee

  • Ask your gp for an anti nausea specifically for oramorph usage. I was taking this many years ago and felt the same as you. This helped with the side effects whilst taking oramorph ( morphine ). hope this helps

  • One of my friends has this occasionally and describes it the same way you do. No amount of ordinary or strong pain killers helped it. The only thing that did help was Tegretol, which I think acts on the bit in the brain that is triggering the nerve pain, rather than just trying to kill the pain. For some reason, a lot of doctors don't seem to want to prescribe Tegretol for TGN, but if it is a med that you can take with your other meds, then I'd push to get it prescribed to try it. It isn't an immediate relief, but you should feel it after a few days, and you may need to take it fairly long term if you get TN a lot.

  • I know TN is awful, and don't really know what to suggest about that, sorry.

    Regarding the oramorph, you will get used to it after a while. I have been on it for a few years now and have the MST - slow release morphine tablets as well, taking the oramorph to top it up when my pain is worse. I was terrible when I started on it, feeling very sick and as if I was on another planet to everyone else... although nobody could tell :)

    I still feel sick sometimes and my docs have prescribed Cyclizine tablets which do stop the awful nausea.

    I hope you manage to keep on top of things. It can't be at all easy for you with the children and their demands on you when you feel awful. I see Briar-Rose has suggested the pain-clinic. I go sometimes [if I get very down], and that helps a lot... being able to talk to other people who understand, or can empathise gets the worst of the bad feelings and thoughts out and I usually feel a lot better.

    Best wishes.

  • Hi, I don't know if this is an option for you but my friend had surgery for this in Tuesday as they could see the nerve being compressed in an MRI scan, she has a tough few weeks ahead but they think it will be a cure! Might be worth talking to neuro if you can? Hope you get some relief soon x

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