Trigeminal Neuralgia

Posted , 9 users are following.

I had TN for around 6 years ...... The pain is so bad , i dont know what to do anymore ....... i never sleep for more than an hour at night.......This pain wakes me up 6/7 times a night, i get it about 5 times a year and it lasts for about 5 weeks each time....... The pain is so bad in the night i just carnt  take it anymore ....... ive had a MRI scan and the doctor said there is nothing they could do for it  his words were Learn to live with it Neil  im sorry ..........  The pain is in the right side of my face and above my eye .... help needed please...

0 likes, 13 replies

Report / Delete

13 Replies

  • Posted

    . I've had TN for 21 yrs.

    I personally will not take medication ever again because of the horrific side effects on the brain.

    What has worked for me was acupuncture with the electric stimulating machine. This machine clips onto the needles making it more effective.

    Second thing that worked really well for me was Prolotherapy (dextrose injections) to the face, head, jaw and neck. Naturalpathic drs handle this.

    Third thing that continuously works for me, is Magnesium Glycinate. 1200-1600mg a day. Out of a 1-10, 10 being great, I'm a 7. Not bad. But it took some time. I know exactly how you feel.

    Report / Delete Reply
  • Posted

    Dr. said learned to live with it? Is this before or after he’s tried medications? Sent you to pain doctor? Tried procedures? You didn’t say anything about what you are taking or tried. No one can survive without sleep and being in horrific pain is so difficult. Right now I’m trying to decide how much pain I can live with before I try the MVD surgery. The medications are only helping to dull it a little.

    Can you share a little more about what you’ve tried and what’s he’s offered? I am so sorry for what you are going through. I understand. I haven’t been able to leave the house except doctors appt since December. I can’t talk for very long without pain. This is a very difficult condition.

    Report / Delete Reply
    • Posted

      Thanks for your reply..........The only painkiller that does help are solperdine  but can only take for a few days.....I went for a scan and he gave me Carbamazapine they didnt do a single thing ..........i did ask if an operation would help and his reply was , your very lucky you dont have this everyday only if you did we may think about it so until then there is nothing we can do............ The pain is so bad t makes me vomit most days...........
      Report / Delete Reply
    • Posted

      If you check surgery isn't always successful. Like I said before Taking 800 mg of Turmeric in the am takes pain away for 12-14 hours.  At night I take 1/2 - 1 tablet  Carbamazapine so I sleep through the side effects. 

      Carbamazapine didn't work at 1st for me until they upped the dosage. Now I take less then I use to.

      Make sure you avoid sugar & acid foods like tomato's. 

      I ate noodles for 1 1/2 years because of this.

      Report / Delete Reply
    • Posted

      Hi,

      Long story, but in short....

      Pain in left eye gradually got more painful, less responsive to over the counter medication, gradually spread to other parts of my face (so affecting right and left), it got more frequent and eventually I self medicated with my husband's Tramadol and MST. These did nothing to alleviate the pain. It got so bad that I had to go to the doctors. Long chat, description of pain and shocks and eventually a diagnosis of TN (I sort of expected this diagnosis as I had ruled out a new and interesting variety of migraine, cluster headaches etc). Once started on Carbamazepine I got some relief, finally!! 😁 Saw a Neurologist and have had MRI with contrast and am now waiting for results. (I also have autoimmune disease and have had migraine on the left side for over 40 years). I have many more periods without pain than with these days.

      You mentioned vomiting with the severity of pain. I experienced the same thing, or so I thought. It turns out that I sometimes have migraines and TN attacks at the same time. I have suitable medication now and things have improved.

      My advice is to go back to the doctors and insist on seeing a Neurologist. Ask for an MRI with contrast. You could also get better control of the pain with oxcarbazepine (think that's correct spelling 🤔wink. I also use a volcanically hot hotwater bottle against the painful area, it seems to help the most!

      Best wishes and happy hunting for a resolution to your pain.

      Report / Delete Reply
    • Posted

      Hi Susan, I am so glad you found some relief. I don't care for the side effects of the meds. 

      Instead I tale 800 g of Turmeric in the am. At night I take 1/2-1 tablet of 200 mg Carbamazapine. I hope you have long lasting pain relief!

      Report / Delete Reply
  • Posted

    thats terrible ask your doctor for an operation have and no pain now
    Report / Delete Reply
  • Posted

    Where do you live, l go to London UCLH and see Dr Matharu. You need a good Neurologyst.  I have had TN and SUNA since around 2005.
    Report / Delete Reply
    • Posted

      Thanks for your reply ......... I live in Manchester.......I went to the local hospital a few years ago and seen a neurologyst  called Mr Dick he was a great help but he has since retired....... My own doctor said there is nothing they can do as its not bad enough yet to have an operation........The only tablet that does ease the pain for a short period is Solperdine, but im only allowed to take for a few days...... The pain is so bad that i vomit most days when i have it ....My life is  hell with the pain .....
      Report / Delete Reply
  • Posted

    So sorry about you pain Neil. Don't lay on that side or put pressure on it. 

    I was given Carbamazapine for the pain. It had bad side effects from the meds. There are a few natural ways you can go during the day.

    I take as soon as I get out of bed 800 mg of Turmeric (A spice you buy in a pill at any pharmacy.) It didn't work for me at night.  If you take it to much it doesn't work.

    The other natural is B 12 & also a B complex. This has to be taken with food in the am. It's an energy vitamin.

    I like the Turmeric better. (It's a game changer for me!)

    Then at night I take 1/2 - 1 Carbamazapine. This way I sleep through the side effects.

    If your Dr. isn't willing to perscribe med's I would see another Nurologist.  

    Please let me know how you make out.

    Have a Happy Easter & pain free weekend!

    Report / Delete Reply
  • Posted

    Which branch is it in? Mine is V3 (Mandibular Branch) affecting mainly lips, tongue, left cheek & left ear.

    ?Mine usually lasts about 5 weeks, once or twice yearly. I have had 4 surgeries. 1st was MVD which lasted 7 yrs pain free. Next was Gamma Knife leaving me pain free for 3 years. Then a 2nd Gamma Knife for another 3 pain free years. In April 2017 I had a PSR surgery that totally failed. Now April 2018 I will have my 3rd & last Gamma Knife When my pain is at its worst I can't eat, drink or swallow without lots of pain, Not sure where you are located as specialists aware of this disease are far & few between. I am in pain as I write some of this. Meds that help are 400mg x 3 daily of Tegretol,, 300mg x 3 daily of Gabapentin. Recently a Doc at an ER put a 50mcG Fentanyl Pain Patch that lasts 72 hrs on my arm. It immediately put up a barrier making the pain less intense.]

    ?Any combo of those drugs may work for you. I have also mentioned available. surgeries. Hopes this helps. Prayers for you buddy. May the pain Angels bless you.

    Report / Delete Reply
  • Posted

    I am so sorry it sound like you have been through a lot. I had acupuncture that did help by the second treatment. I burned through $600 quickly. Insurance didn't pay. The pain eventually came back.  I was suppose to have surgery the week before the acupuncture but canceled because of the benefits I did get at the time. 

    I did go back to the Turmeric because that is the best relief I got without side effects. Please Have an opened mind & consider it before the surgery.

    Have a blessed day!

    Report / Delete Reply
  • Posted

    I am so sorry you’re having to deal with this. I also had TN for 6 years and was completely maxed out on all my medications. I was beyond desperate so I opted for the MVD surgery. My neurologist agreed that it was the next step since medications were failing. I had the surgery in August 2017 and I’m still pain free. I don’t know how long it’ll last but I’m hoping for the best. My surgery was 100% successful. I had no pain when I woke up and I was off all medications in 6-8 weeks. My advice to you is research it. The pros outway the cons by a long shot. I had the surgery when i was 24. A lot of people on this site still suffer with this horrific pain. I still come here because it’s important to show the aftermath of surgery in my opinion. You don’t have to live this way forever. Our bodies get used to medications making them less effective. The MVD was my last option and I would have it again if I needed to. I’ve had nights where the pain would wake me up and I was miserable. I wanted to kill my self at times. This site made me feel not so alone. There is hope though! Surgeries have come a long way in the past several years. Please let me know if you have any questions and I’ll answer them the best to my ability! Prayers for you! Oh and btw, my MRI was also completely normal. I had 2 done and an MRA and no abnormalities at all. When he got in there he realized there were blood vessels pressed on the Trigeminal nerve and he said you can’t see stuff like that on an MRI.
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up