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One year in & finally feeling like a human..

Posted , 5 users are following.

tanee2
tanee2

Hello there, I just wanted to post a comment to offer some positivity to assure other TN sufferers that there are people out there that do understand your pain, don't give up on trailing medication even when the side effects are horrifying and sometimes really embarrassing.

There is tonnes of help out there we don't know about, groups chats forums.

My biggest frustration last year was people, people not understanding the intense pain I was, or having such a rare condition no one understands, working out how I was going to ever live a normal life or manage to clean my teeth without crying.

I now take Lamotrigine alongside Neurontin and to control the anxiety/depression side effects a low dose of amitriptyline .. I have been told eventually and very slowly I will be able to reduce these and just be on one higher dose of Lamotrogine at night. I also carry a hot water bottle or small microwave lavender bag, and a scarf wherever I go so im not caught out. I find when the pain comes on warmth not HOT just warm is really soothing.

I feel ALMOST totally normal as long as i take the medication like clock work everything is ok, the only time it's heightened is in the bitter cold/ high air conditioning and if I drink any alcohol (I am still trying to get my glass of red to feel the same I refuse to be defeated)

If you are new to TN please don't give up or feel alone, I hope you find this message helpful.

x

2 likes, 4 replies

4 Replies

  • eddie13
    eddie13 tanee2

    Posted

    Hi Tanee2,

    Generally I am watching out for new comers wondering what the heck was that? But great to read perspective from someone who has been at it for a while. Cheerio, I agree, especially with the take the meds "like clock work" advice. Even an hour off can set me back for surprises, and the surprises may take a day or 3 to catch up. On time is so important.

    I feel ALMOST totally normal too. Thanks to tegretol, on average I have 2 weeks a month with absolutely nothing. The other 2 with nuisance pains around my gums, teeth, and/or jaw. The can't shave my mustache area on the left side is a wierd one. Week later the electric shaver will be going over there without incident.

    About once a year I'll get an incapicitating electric shock. It lasts only seconds thank god.

    eddie13

  • Baudwalker
    Baudwalker tanee2

    Posted

    I agree in general with these comments.

    Mine started as a slight sensitivity on the left side of the face.

    A year later it was unbearable pain.

    Tried many things and ended up on Lyrica (absolutely horrendous drug) and ox carbamazipine. Started the lyrica at 200mg four times a day and became a zombie immediately..now down to 50Mg three times a day. The ox carbamazipine was 600Mg four times a day and now back to three times a day.

    The GP's, Neurologists and everyone in between have differing opinions of WHY.

    In amongst all this I had a blocked bowel and they removed a bowel cancer.

    All of a sudden everyone wanted to blame cancer but they can't support it. They started like normal and talked about surgery then it was Meckals Cave and now a gland higher up the cheek. Seems to me everyone is covering their collective rear ends 'in case' they miss something and they suffer whatever the consequences. Anyway got right off topic there.

    DO YOUR RESEARCH as everyone has different results with different drugs.

    Quiz your GP and be forceful in demanding a result. Most GP's never see these issues and all bulk them into TN. I actually have what is termed FACIAL NEUROLOGY because the onset was quite different to the normal TN.

    Read the forums, read the documents on the web and become very familiar with the options and the potential treatments. THEN discuss this with your GP and take it from there.

    Best of luck with the continued treatment successes Tanee2.

     

    • tanee2
      tanee2 Baudwalker

      Posted

      I've tried and still trying everything available and where ever I can find time, CBT courses, Pain management, Pain clinic, clinical psychologist, two neurologists and 4 doctors .. It is not an easy road and everyone's meds are different but I do believe there is something that works for at least getting the sharp shooting pains to be not so awful for everyone.

      My first GP knew nothing about facial neuralgia at all and gave me antibiotics which did nothing at all.

      I was lucky with my second one as she had just recently had someone else with the different type of TN who suffered from severe migraines.

      I just wanted to say something that wasn't so scary. When I first found I had this I was told 'to get on with it, get over my 'woh is me, why me attitude' all I really needed was someone to say  this is really rubbish but you will be okay.

      Even someone explaining to me that i didn't have to pay for every single prescription i spent so much money trying different medicines when i could have just bought a yearly certificate i new nothing about. Feeling alone and drowning in the unknown at 30 just made me feel really out of control. For a very organised control freak it was a shock!

      I'm so sorry to hear of your news and hope the cancer is totally resolved! Wish you every luck.

      Tanee

    • susan33651
      susan33651 tanee2

      Posted

      Hi,

      My pharmacist actually advised me to get a pre-payment certificate! It has saved me a fortune as I'm on a variety of meds for a few health problems, including TN. I'm sure I rattle! And you're right, feeling so bad at such a young age is horrible. 

      Wishing everyone in this boat the best.

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