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trigeminal neuralgia, seriously cant cope anymore, tips please

Posted , 86 users are following.

laura19209
laura19209

So I'm 24 and since Friday have been in agony, sunday the doctor said it was trigeminal neuralgia, after reading info on it, as I had never heard of it, its left me pretty depressed, I can't face doing any house hold chores, I've literally just lay on sofa, with my scarf wrapped round my head, feel like little red ridding hood! Not good when I have a 4 And 2 year old to look after, is there any tips on getting through this? I'll be honest early hours Sunday when it felt like my face was being stabbed with electric rods, I considerd taking all the tramadol I had, I was prepared to take that risk just to feel no pain, anyway I didn't the thought of the kids stopped me, I'm taking that anti convulseant tablets and so far provides some relive, although I feel rotten for taking them, is there any tips for getting through this? Since Friday its as though its ruled my life, would rather go through labour than this, never ever known a pain like this.

7 likes, 208 replies

208 Replies

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  • Sibanda999
    Sibanda999

    Posted

    Hi, I totally understand! I have 5 year old and 3 year old and no family around me. Just my husband who is working all the time. I have been diagnosed with this awful disease 2 months ago, after many visits at the dentist. I have also lost 2 teeth because of that. Everyone thought it's my teeth until I got fed up and went to see my GP. She said its TN. They have started me on Tegretol, didn't help now I am on Gabapentin 600mg 3 times a day and it worked within a week. But now I feel like it's not me anymore. I keep wearing a scarf wrapped around my head because I am so scared. I am going back to work next week, aftter weeks off sick, I am so petrified! TN has ruled my life and still is! I wanted to kill myself that's how bad and strong my electric shocks in my face were. Don't worry, I promise the pain will eventually go! I have been referred to neurologist 4 weeks ago and still waiting!
    • renay23174
      renay23174 Sibanda999

      Posted

      I have the same condition. I am on Neurontin and tegratol. Have an MRI scheduled. I am believing God for healing for us.
    • colleen90451
      colleen90451 Sibanda999

      Posted

      I have the same disease and it is awful but I am having surgery in 2 weeks to relieve pain. Meds worked for a while, then stopped, can't take the pain

    • marlene36342
      marlene36342 colleen90451

      Posted

      Hi Colleen - I was diagnosd with TN in 2006 and had MVD surgery in 2009.  Is this the sugery you are having?  If so, it would be my pleasure to answer any questions you may have.  Best wishes.
    • hsisk24
      hsisk24 marlene36342

      Posted

      Hi Marlene. I'm not the OP but I did have some questions about the MVD surgery. I actually got diagnosed with TN 5 years ago and I'm considering surgery. The medicine works for a little bit but it always comes back and I'm tired of it. Did the surgery work for you? And how long was the recovery time?

    • marlene36342
      marlene36342 gayle1234

      Posted

      Hi gayle - I would be pleased to answer any questions you may have.  I am having alot of pain today so will write back to you.  I just didn't want you to think I ignored you.  MY TN is not gone and never will be but there are many people who have had MVD surgery and are now living pain-free lives. Chat soon. 

    • gayle1234
      gayle1234 marlene36342

      Posted

      Thank you so much for your reply even though you’re in pain, I’m so sorry to hear this, hope it buggers off soon, talk to you soon, Gayle x
    • colleen90451
      colleen90451 marlene36342

      Posted

      Yes, I had surgery on 7/3/17 and I feel wonderful, no pain just a little numbness
    • leah53228
      leah53228 gayle1234

      Posted

      Hi Gayle - I'm 23 years old and started with Trigeminal Neuralgia when I was 15, diagnosed at 16. I trialled all available medication for TN, majority I had awful side effects to so couldn't continue. Only 2 seemed to work which where amitriptyline which after a while stopped and then nortriptyline and the same with that. I had microvascular decompression in 2015. The recovery time for me was 6 months and in them 6 months I had no attacks. The surgery was successful for all of 8 months and now TN is back with a vengeance. I'm currently trialling more medication which isn't used for TN as doctors now do not know what to do with me but again, awful side effects so having to discontinue. I found the recovery after surgery was no where near as bad as the TN attacks I suffer with but doctors are in dispute whether to opt me for MVD surgery for the second time. Good luck with whatever the outcome is that they decide is best for you & hope you are pain free very soon.

    • gayle1234
      gayle1234 leah53228

      Posted

      Hi Leah, sorry I have only just seen your reply, thank you for contacting me.

      I am so so sorry your MVD did not work, and you are still in pain. I am due to see a neurosurgeon in January to see what my next step is after taking loads of different meds, I will let you know what they suggest 🙏

      Regards

      Gayle x

    • jonathan04350
      jonathan04350 colleen90451

      Posted

      Hi Colleen,

      Like you I've been suffering badly with this awful condition. I'd be very interested to know what kind of surgery you had and where you had it. I'm based in Scotland.

      All the best

      Jonathan

    • colleen90451
      colleen90451 jonathan04350

      Posted

      Hi Jonathan, I haven't been on here in a while but I had my surgery in Maryland at John's Hopkins Hospital by Dr. Michael Lim

    • linda50613
      linda50613 colleen90451

      Posted

      I'm new to this group.  I've had TN for about19 years misdiagnosed until about 6 years ago.  I went through all the drugs, some with horrible side effects.  I also went to Baltimore, Maryland and had Dr Lim do the MVD surgery.  I am 72 years old.  I have TN on both sides of my face and have lived through some unbelievable attacks.  I had the right side done first because at the time it was the most violent.  That was October 2017.  My TN nerve was badly damaged so it took awhile to know if it worked because the nerve was so swollen.  I considered it successful so just returned from having the left surgery done.  Lots more side effects this time.  Face numbness, balance issues, numb tongue with phantom oral sensation (a feeling that you mouth is full of fiber), numb eye and left side of nose, and a little drooling.  I don't know if it worked yet because most of my face is numb; not drooping.  I do have pain on the right side of my nose but think it is from the left side bleeding over.  I'll take all of this over the pain.  Dr Lim is great but he's only a man.....God is the comfort and force of healing we MUST hold to.  Then we've gone to the top.   I wish you all well with your struggles.

      DON'T GIVE IN TO IT.  LIVE when you can and hold up when there's an episode.  I'm 72 now and I won't give TN the active years I have left.

    • colleen90451
      colleen90451 linda50613

      Posted

      I happy you are doing better, Dr. Lim is great but like you said, God is the healer. I have a little tenderness from time to time but it's only been 11 months.

    • gayle1234
      gayle1234 jonathan04350

      Posted

      Hi jonathan04350 I hope you are well, I am currently waiting for the MBD surgery (I’m in the UK) BUT I have been taking Nefopam 30g x 2 daily (can take upto 6 a day) and I’ve been pain free since taking it 5 months ago. As above can take 6 a day but I only have to take 2 - ask your doctor for it, my gp did a lot of research for me and prescribed it, I’m not sure I’ll go ahead with the surgery if this med continues to work like magic! 

      Good luck 🤞🙏

    • gayle1234
      gayle1234 linda50613

      Posted

      Ask your gp for Nefopam 30mg I’ve been taking it since January and have been pain free since - I only have to take 2 daily but you can take upto 6 a day.

      Good luck 🤞🙏

    • robert42630
      robert42630 colleen90451

      Posted

      Hi Colleen

      Good day I am also suffering from the same disease nothing help : my full face is on permanent on fire ,plus electric choke

      what time of surgery did you have and how are you doing now

      please let me know

      Robert from south africa

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