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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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  • fiona2744
    fiona2744 laura19209

    Posted

    Don't feel disheartened, there is hope with TN.  I've suffered with it for over 5 years now, and there are things that you can do to help.  I'd ask your GP for a referral to a facial pain specialist, these are often neurologists but also some maxillofacial consultants are very good too.

    Have a look at  the Trigeminal Neuralgia Association UK website, and it's worth contacting them as almost all the volunteers are sufferers or carers so they are very understanding of TN and the problems that sufferers face. They will be able to help you with any questions you may have and point you in the right direction.  There is hope out there, so don't despair.

    https://www.tna.org.uk/

  • alicot
    alicot laura19209

    Posted

    Stop it with one of the surgeries for TN.  That seems to be the only way to get your life back as far as I can tell.  The drugs don't cut it for most.
    • stephen16460
      stephen16460 alicot

      Posted

      Yea the Marijuana doesn't seem to be working.   I have my dad scheduled to see the neurologist next month. 
  • em_x
    em_x laura19209

    Posted

    hi!I've had trigeminal neuralgia type2(my pain is constantly there that means),I take 4 different pain killers,amitriptyilin plus gabapentin, since my 40th birthday,don't give up so quick I thought I woz the only 1 who wud rather give birth again lol!u do get used 2 the tablets u must take,I wear a hat all the time,I'm agoraphobic & all ov this is coz I dare not go out just in case,I'm so sorry u have this bludy crap affliction,I really no ow u feel! em x
    • holly35803
      holly35803 em_x

      Posted

      Hello Laura, not many folks have written saying they have TN Type 2. I think I have type 2, but I am not sure. My pain began EXACTLY one year ago, and the dentist recognized it as TN. My existing Neurologist (for Epilepsy) did not believe that I had TN because the pain is chronic, and it moves from the mouth up to the eye sock/sinus area, then back to the mouth/jaw. I am NOT affected by wind or touch. The pain is simply chronic. However, I am very well controlled with Tegretol (Carbamazepine), I know it won't last forever, because the websites say drugs for TN never last forever. I am sorry to hear this has been so hard for you. I hope I will survive as well.

    • ibrahim57343
      ibrahim57343 em_x

      Posted

      Hi em hope you are feeling better

      I need advice plzzzzz help , its been 3 weeks iam suffering from type 2 tn , its so painful like someone has punched me and my whole side left tempel and face is acheing and sometimes getting needles stuck in my ear ,

      Just need advice what has helped you ?

      Hows the pain now ?

      Any surgry suggested ?

    • ibrahim57343
      ibrahim57343 holly35803

      Posted

      Hi holly hope your feeling better

      My tn type 2 just started 3 weeks ago oli need your kind help plzzz

      Any suggestions or treatments surgery?

      what has helped you ? Anything ease the pain of naturaly ?

    • ernestine_93088
      ernestine_93088 holly35803

      Posted

      My TN goes into remission, this is when I get off the meds. I had to get off a little at a time. Then when the pain would start, I would startmeds. again.  As a result I managed to stay on the meds. for about 7 yrs. on and off. 

      The meds. work when I need them because my body doesn’t get used to having them. Drs. want to keep you on meds all the time. Good Luck

  • alicot
    alicot laura19209

    Posted

    The only answer I have is forget the drugs. I see neurologists as drug pushers. Find the TN surgeon in your area and do a surgery.  They are low key surgeries and can last a long time without drugs.  Get your life back!

     

  • Nellbelle303
    Nellbelle303 laura19209

    Posted

    Hi Laura hope you have found success with treatment, I had to have surgery and that was ten years ago. The surgery was a success for the pain in my face but the surgical site remained tender and felt charged with electricity very painful and still does to this day. Sadly on pain meds, what's wo is as of April 2014 the trigeminal neuralgia has returned. Now on Sonisamide and it is working well. wink
  • hannah47501
    hannah47501 laura19209

    Posted

    Hi, I have just been told I have trigeminal neuralgial. Does anyone have some tips to cure the pain? I am on gabapentin 3x a day which hasn't quite kicked in. The pain is always worse in the evening when I am relaxed. Have constantly got a hot water bottle on my facesad does anyone seem to be in more pain in the evenings? If so what do you do!?
    • Nellbelle303
      Nellbelle303 hannah47501

      Posted

      Hi Hannah the meds your taking are the norm and usually the Dr. builds up the dose I did this also but I was so drunk from the increase I couldn't handle it so surgery was my final option. I had episodes of striking electrical pain up to 100-150 times a day made no difference time of day or what I was doing also my face twitched with every episode. If your meds do not work you may need surgery. Sadly this does not go away😞 on its own. Peace
    • RachisCool
      RachisCool hannah47501

      Posted

      You must get your doctor to refer you to the pain clinic. None of the meds work.
    • maggie80535
      maggie80535 hannah47501

      Posted

      Hannah,you also can use additional pain relief like panadol  or if it's really bad a strong painkiller and off to bed. You can try holding your breath .Stand really still and no talking.This works for me most times.
    • renay23174
      renay23174 hannah47501

      Posted

      Hannah I am on 900 mg of Neurontin daily and Tegratol three time a day. It had controlled the pain for a month. I am getting an mri and seeing a neurosurgeon. I pray we are all healed.
    • Tnhurtsme
      Tnhurtsme renay23174

      Posted

      Has anyone had luck any luck with medication they are taking keep running into losing effectiveness
    • renay23174
      renay23174 Tnhurtsme

      Posted

      I have had luck with the meds. I am taking Neurontin 300mg 3 times a day and Tegratol 3 times daily. I am seeing a newuosurgeon Jan 9th to have an MRI. He specializes in Gamma Knife. Will see what he says. I would hate to live on the meds as they cause confusion, my hands to jerk., driving is a mess. But thank God for relief from the pain. How are your ?
    • Tnhurtsme
      Tnhurtsme renay23174

      Posted

      How long have you been on gabapentin an tegretol ive taken oxcarbazpine an gabapentin. After gabapentin lost effectiveness for 10 months now ive been on those for nearly 8 months its still working thankfully from the lord i have prayed but im ready to see a neurosurgeon now
    • Tnhurtsme
      Tnhurtsme renay23174

      Posted

      Also i should say my tn is constantly hurting i dont get it from touching my face or the wind or anything really its just in the background
    • renay23174
      renay23174 Tnhurtsme

      Posted

      I have only been on the meds a month. Since I read so much about them not staying effective I went ahead and made an appt with a neurosurgeon.
    • Tnhurtsme
      Tnhurtsme renay23174

      Posted

      Your right about that but the surgery can have side effects i would use it as last resort like me im trying heal mine if i can also i found these acupuncture pain patches that really help lower the pain
    • ibrahim57343
      ibrahim57343 hannah47501

      Posted

      Hi hanna

      I need some advice plzzzz

      Iam on early stage of tn just started

      I need advice

      Have you underwnt any treatment sury and any Relife ?

    • colleen90451
      colleen90451 hannah47501

      Posted

      I only had pain in the day time, once I was lying down my pain was calm. Meds not working for me, surgery in 2 weeks
    • gill32586
      gill32586 colleen90451

      Posted

      THe very best of luck to you with your surgery Collen. I do hope it's sucessful. We'd all give so much to be pain-free.I also fine some relief when lying down but the pain is made worse when bending forward. Love , Gill

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