Now i'm just desperate, can't take it anymore.

Posted , 7 users are following.

so, just an update, i have TN on both sides which was cause by hospital dental work (i still need some teeth pulling) someone has just upset me so much.

 they said that because i have it both sides that an MVD operation would not work as there is a compression of the nerve and this is much less likely to be the cause of bilateral TN.

im so upset i just don't know what to do apart from ending my life, thats the only way out from this. im sorry but im so upset.

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  • Posted

    Dear 'fed-up'

    Really sorry to read that things are so wretched for you. Life can be a real bummer at times! Please get some professional help to support you through this. I'm not an expert on what's available but The Samaritans would be an option and they're just a phone call away. People think that such support is only for others but it's not - it's for you and me - ordinary people who have been pushed to the edge for whatever reason! Do something, my friend, that will bring some fresh hope, new ideas and perhaps another way of looking at life. Don't let this pull you down any further, you're worth more - we all are!! Take care of yourself. Colin x

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  • Posted

    Know you are not alone and suicide is not the answer.  I did some research on bilateral trigeminal neuralgia and found an article in the Turkish Neurosurgery 2007, Vol: 17, No: 4, 294-296.  It says that it is possible to do bilateral microvascular decompression surgery.  I myself have unilateral TN, but have had two MVDs.  Please talk to your neurosurgeon about bilateral MVD.  It might bring you some relief.  If you haven't spolen to a neurosurgeon, you should.  Don't give up.  And advocate for yourself with your healthcare providers.  I am sending good vibes your way.
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    • Posted

      thanks Cary, im at the pain clinic next month and i  will ask if they will refer me, but i don't hold out much hope they will want to try allsorts and make it worse for  me, i really don't want injections and whats not. but as i have it on both sides they might, just might refer me.
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    • Posted

      Did you get a chance to look at the Journal article I found for you.  You could download it and take it with you to the appointment.  Also check out The National Institue of Neurological Disorders and Stroke, and rh Trigeminal Neuralgia Association UK.   Remember your teeth are not the problem.  The problem is the nerve.  You can remove the teeth, but the nerve is still there.  So no teeth pulling.  Have you been given any medications: carbamazepine, pregabelin, etc.?  if you are in an episode then you need to go to the hospital.  Be armed with information about TN and keep advocating for yourself so you can get some relief.  Peace be to you.
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  • Posted

    what a strange thing for them to say. I dont see how it makes a difference whether you need to have two done or one. I am seeing a top surgeon in Sydney in two weeks and i will ask him while i am there. just waiting for an appointment but i expect it to be either the 12th or 15th June that i see him. Dont listen to that person,you need a second opinion. Ask for a referral if necessary but see someone else. I cant beleive someone said that to you. *shocked*
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  • Posted

    i called my doctor, the very helpful one, to say i would like to change my tablets and he said to stay on the ones im on and that he would prescribe me morphine, i said no, i don't like the idea of morphine as i need to have my wits about me, i have a son to care for and need to be able to drive for appointments, he said if i didn't like it then i could get another opinion, so i got another opinion. he was very rude and i was really upset as he's been so helpful, everyones knows theres no painkiller in the world that will touch this, otherwise we would all be on it living happy! the next doctor gave me what i wanted and thats tegretol no problem, he said to take 200mg twice a day and keep on the gabapentin and then i could change to pregablin later. so its 200mg a day 12 hours apart and im petrified im going to get pain inbetween those 12 hours, im really panicking.
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    • Posted

      Yay! so you found a doctor who can help you biggrin a big plus for you and a jump forward. I know what you mean about the 12 hours. when it gets to about 11 hour mark i make sure i am somewhere warm and calm because if its a cold place (like outside in the weather) or if i am running around doing things, i get very worried and i am sure that must be a trigger so i avoid those things until i can take the next medication. You have made progress though which is wonderful.

      My gp here where i live says you can have an mvd done both sides, just not at once. i will ask the specialist. its the top thing on my list of things to ask. Hang on fed-up. we're with you.

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  • Posted

    Hi there

    Good to hear from you.

    I'm actually on 400mg a day, as things have subsided a bit. I keep the dose to the minimum that will just suppress the pain. It's working and I'm very lucky, I know. I'm not on any other medication. 

    The pain clinic you are visiting sounds a very useful way of gaining access to others who might help you - getting your GP to recommend an alternative consultant on the NHS might be tricky unless you intend to pay, then they'll be happy to refer you elsewhere! However, the pain clinic might be a way in - use them well! 

    Good luck and stay strong! Colin

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  • Posted

    Hi again

     I think our messages crossed 'in the post'! 

    It's a difficult one, you have the drug you feel you need - Tegretol - but you're worried about the time between doses. I guess you'll have to trust the new GP and see how things go! I know what you mean by being 'terrified', we just wait for the thing to kick off, don't we! When I get an attack, I just freeze, scared of moving a muscle and if I'm lucky, it will subside. Keep in touch.

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    • Posted

      so you still get some pain? its bad enough being on one side but coping on two is crazy, i can't understand how come i have it on both sides. i guess im just lucky!
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  • Posted

    PS How nice to hear you have a son!!
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  • Posted

    I feel you're pain I honestly do I'm a 21 year old boy and have been suffering with this for just over a year. It's nearly got that point with me a few times.life is so precious, how I looked at the situation is the smallest glimpse of life is better than none at all. I have severe anxiety which does not help my situation if I can pull through I almost certainty sure anyone can. Much love joshua
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    • Posted

      im sorry you have this at such a young age, did it just come on? yeah, i have anxiety and it makes it worse being anxious worrying about when its going to strike!
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    • Posted

      Yes I started with a crawling sensation in my head and face over a year ago and got numbness in the face and vision disturbances . But last Tuesday thats when it really hit me and flared up i had a numbness and pins and needles sensation on my right side of face which over 24 hour spread all over my face and head top to bottom. Then changed to burning sensation all over like bad sunburn  is all I can describe the sensation as, these sensations can come and go quickly or can stay around for some time. then progressed to electric shocks sensation in lower jaw and mainly in bottom four front teeth which are intense. Now this had put my anxiety through the roof. What symptoms do you suffer with and how did it start for you? And how long do symptoms tend to last for? Sorry about the questions Im still relatively new to this.
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    • Posted

      i  know  how   i  feel   you  want   god  to  take  you   mine  it  beging  in   my  ears   thunderiing  and  lighting   then  the  head  attacks  that  all i  do  crycry
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    • Posted

      hi Joshua, sorry its taken a while to reply, i had given myself a break from all this, its driving me mad. mine started after dental work.

      i get all the electric shocks and thumps everywhere, both sides too! i have changed my medication and im on very low doses (at the moment) i take tegretol 400mg a day, but if i get stressed it comes right back.

      what medication are you on? you have to take a break from reading all this and get your meds sorted out mate, trust me it will do you no good, but im here if you need to ask anything.

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