1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Desperate

Posted , 8 users are following.

kevin18765
kevin18765

I had MVD surgery in September of 2017 after having gamma knife surgery in December of 2016 which failed. It has been 7 months and I am beginning to get pain back on both my right and left side infrequently. The problem that I am having is that my entire right side of my face my right side of my nose my right side of my upper lip the right side of my lower left the right side of my chin the right side and tip of my tongue have tingling and numbness like a thousand ants we're crawling on it. I am so desperate that I am having thoughts of harming myself. I don't know what to do I feel hopeless. This is happening 24 hours a day 7 days a week. The only relief I get is when I asked sleep. I am on 1800 mg of Gabapentin. Will this ever go away or is this the way my life is going to be? I have TN pain in my lower jaw the bridge of my nose where I can't wear my glasses shooting pains in my temple area and numbness around my eye as well. I simply cannot take this anymore. Has anyone else been in my position and what in the world can one do?

2 likes, 31 replies

31 Replies

Next
  • luanne72699
    luanne72699 kevin18765

    Posted

    Kevin......don't despair there is still hope. I was exactly in your situation. I sound so much like you. Many years ago i had a needle procedure for trigeminal neuralgia. It was effective but the pain gradually crept back. In May 2016 i had MVD that was unsuccessfull. I was left with numbness and burning on the whole right side of my face and head. In fact I woke up that way. It was awful. I like you took a boatload of gabapentin. It may have helped some but it along with the pain put me into a deep depression. And I did attempt to take my life. Fortunately God had other plans for me. There are many other medications, modalities, and therapies that have been helpful to me. I know that your pain can be better than it is today. I see an excellant neurologist, psychiatrist, and psychologist. Through trial and error my doctors have found medications that are working for me. I take cymbalta, topamax, baclofen, tizanidine, amitriptyline and remeron. Its a lot but it works for me. My psychologist does CBT with me. Dont give up. There is hope. God bless

    • kevin18765
      kevin18765 luanne72699

      Posted

      Thank you for the uplifting comments. Did yours get better? I need confirmation there is hope. I also take lamotrigone 200 mg a day and clonazepam to quiet my nerves

      Wondering if a second MCD would help.

    • luanne72699
      luanne72699 kevin18765

      Posted

      Oh Kevin I am so so much better. I still have some pain every day but it’s manageable. I can have a life! Feel free to reach out to me anytime.wink
    • luanne72699
      luanne72699 kevin18765

      Posted

      I forgot to mention that the doctor who did my MVD told me to never have any more surgery for TN. I’m just not a good candidate. Based on my his recommendation and my terrible outcome if I were you I wouldn’t have another surgery.
    • kevin18765
      kevin18765 luanne72699

      Posted

      Thanks Luanne. I take lamotrigone and clonazepam as well. The clonazepam settles my nerves and keeps me calm. I only take it at night. I have a demand in job and I am in charge. The numbness and pins and needles is horrible. It is causing me to slur my words and bite my tongue. If I could just get rid of that. I appreciate your help. Does the baclofen help?
    • luanne72699
      luanne72699 kevin18765

      Posted

      Yes it helps me a lot. Makes me dizzy though. Hoping that side effect goes away. Can you take more lamictal?
  • mark44210
    mark44210 kevin18765

    Posted

    Be strong Kevin.

    Things will get better. 

    Stay warm.

    Drink warm water.

    Stay active with long walks if it is not too cold outside. 

    Drop all thoughts and focus on breaths.

    Read a good book.

    • kevin18765
      kevin18765 mark44210

      Posted

      Thank you for your kind advice. I will try this. Sleeping is good for me but can't sleep the rest of my life. I have a very demanding job and I'm in charge. Lots of pressure and eyes on me. Family support is not there.

    • mark44210
      mark44210 kevin18765

      Posted

      I used to wake up every 5 minutes (not able to even sleep) but was cured with acupuncture (20+ sessions).

      I am certain that if I am not careful (lifestyle change to eating healthy and a healthy mind), it will come back.

      Most of us TN sufferers are highly strung individuals and some tend to be pensive or replay certain emotional conflicts over and over - this is detrimental to our mind and body. Learn to let go. 

      This pain will end and you will get to enjoy life again. I hope you can find a good qualified acupunturist in your area and a good psychologist if possible (I go to one - very helpful).

      Get well soon!

    • colin69485
      colin69485 mark44210

      Posted

      Mark, yours is an interesting post. What is the basis for saying that TN suffers are 'highly strung'? My best scientific guess is the one thing we all have in common is an anatomical defect that triggers the 5th cranial nerve and the rest, as they say, is history! I'm not sure it helps Kevin or the rest of us by introducing the idea that TN sufferers have personality issue to deal with as well. We've got enough to cope with and need to stay focussed on facts.

    • mark44210
      mark44210 colin69485

      Posted

      Colin,

      As a sufferer for 3 years, I have visited and consulted with medical professionals (scans, mri and the works like a lot of us on this forum) on the cause of TN. Till today, the root cause is unknown - we simply do not have the facts to work with. I learn (through the hard way) that we can live life as a happy/unhappy or stressed/not stressed. I am encouraging myself to opt for less stress whenever possible. That is my message and my motivation - to share my journey and reassure fellow sufferers that there is hope and cure (treatments I have experienced are published in peer reviewed medical journals).  I hope you don’t take offence when I say TN suffers are high strung - clearly, so are and some aren’t in the general population. I may be projecting it because I am one! 

      Praying for all to feel better.

    • susan33651
      susan33651 mark44210

      Posted

      Approximately 90-95% of TN 1 sufferers will have a degree of compression or entanglement of blood vessels affecting the nerve. Of the remaining 5-10% many will have no identifiable cause. Others may have MS, some sort of previous injury or infection, a few may have tumours of some sort (not all tumours are cancerous).

      The origins of the compressing blood vessels or entanglement are perhaps 'unknown' but they absolutely do cause TN 1. The TN dedicated websites have this information.

      Although there is a body of research which suggests that personality types influences the likely diseases or health problems one might suffer, the research is subject to interpretation, as is any research!

      A huge proportion of the forum members have been affected by this condition for decades (myself included), their experience and the research they have done, their knowledge and expertise is valuable, please, don't dismiss them or suggest that we are highly strung. Desperate - for respite and relief from searing pain or shocks - is a far better description!

  • gill32586
    gill32586 kevin18765

    Posted

    Hello Kevin. I'm in a dreadful rush, with people waiting but just had to reply. My heart goes out to you. I know that the fear is almost as bad as the pain and I know that you seem to spend your life just waiting for the next episode . It's the most stress anyone can feel. but please, please don't despair. I've had this thing for more than 20 years and can assure you that there is more you can look into. I've known the worse it can do but at the moment I am in an almost episode free remission lasting 2 years. Why are you not on Tegretol, the most effective drug for T.N.?. Gabapentin never touched me and also Pregabolin.. I've had Thermocoagulation 3 times and the last treatment has been very effective. I'm living an almost normal life. It's a painless, day surgery treatment which can be repeated.I'm on a dosage of 1000mg Tegretal which keeps the pain down. I'm 75 and still managing well at the moment. I've known your complete despair but I'm sure there's a future for you. Hold on, You're in my prayers, Gill

    • kevin18765
      kevin18765 gill32586

      Posted

      Thanks Gill. Tried tegratol at first and I had horrible side effects. The prayers are appreciated. I am just so afraid the numbness and tingling won't go away. It's getting the best of me. Feel like screaming. Maybe I'll try the tegratol again. I will talk to my DR. My neurosurgeon said it could be a year before it goes away or it's permanent. It's been 7 months now. I can't figure out what went wrong. At 62 I have a few years ahead of me. I don't want to suffer the rest of my life. Glad to hear you are doing OK.

  • colin69485
    colin69485 kevin18765

    Posted

    You poor thing, what a wretched and, as you say, desperate situation, especially after having had two significant procedures to relieve the TN.

    I take 3100mg of gabapentin and it really helps. Lower doses are insufficient to control the pain. The maximum dose recommended is 3600mg, so I'm fairly close to limit. Why not try increasing your dosage, slowly by 100mg increments over several weeks,  until the drug gives you some relief? 

    Meanwhile, I'm off to see a neurosurgeon tomorrow morning with a view to a possible operation. Your history does not encourage me to pursue this option but, of course, everyone is different in the way that this disorder affects us.

    Good luck with the gabapentin, if you choose to experiment with this! Colin

     

    • kevin18765
      kevin18765 colin69485

      Posted

      I was up to 2700mg before my surgery and I couldn't work. I am thinking of moving up slowly but the facial tongue numbness will not stop at all. Very depressing . I'm afraid my nerve is damaged

    • kevin18765
      kevin18765

      Posted

      Tried to mow my lawn today for the first time. Nice sunny winless day. Thought it might be a way to cheer me up. Not. How can you have a tingling numb face and pain in the same spot? Not trying to complain but by the time I was done I was in so much pain. Has anyone ever heard of anyone having their trigeminal nerve severed. To me total numbness might be better. Any thoughts would be appreciated. Thanks
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.