TN Pain Managament 2

Posted , 12 users are following.

Thank you for all the replies and information/advice.

I have called a few places in my state. I was told January was the first available openings.

The cops came to my apartment due to me screaming the other day. This is getting ridiculous I can't even be in pain in peace.

Questions:

1 Does anyone have more anger and irritability with TN.

2 Does anyone take klonopin in conjunction with GABA?

3 Will any type of Opiod help with the constant burning and eye socket pressure

I was giving percocets in the past for pain. At the time I didn't think it would help so I never got the prescription .

I am against the use of pain killers but as of right now I'll take whatever will dull my damn pain .

Midwest posters have any doctors you'd think I could see?

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14 Replies

  • Posted

    TN sucks

    I take 900mg gabby @ bedtime a lone with one 150mg tablet oxcarbazepine. It worked gor me.

    God bless

    us and keep us and give us peace

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  • Posted

    Monster Sucks,

    WOW, you just descibed my attacks to the T. However, I get them almost everyday at around 3 PM until bedtime.

    1. A BIG YES!

    2. No

    3. All my Dr's refuse the use of Opiods. Obviously they are not AWARE of  what the ---- we are going through.

    Does anybody get ringing in the ears as a freebie with this monster?

    I hope everything works out for you.

    God Bless,

    Greg

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  • Posted

    I used to have electrical shocks daily in my face, then I had the MVD surgery, which got rid of the shocks, but left me with 24/7 painful burning pain due to aggressive involuntary movements. I think this was due to complications for the MVD, burt of coure the neurosurgeon refused to admit he did anything wrong. Then he went in the 2nd time (another MVD surgery) as exploratory and caused more damaged. Now I have 24/7 aggressive involuntary movements non stop for over 2 years. I've been to at least 19 top notch doctors and no one knows why and they all have dismissed me as their patient. The only doctor who is willing to work with me now is pain management doctor. Opoids, pain killers, do help with TN pain. It does not get rid of pain completely but it does help. He switched me from Neurontin to Gralise, which I take at bedtime and during the day & night I take oxymorphone for break thru pain. Prior to this I was very suicidal and depressed because no other pain meds help and I've been on all of them. 

    Good luck to you all and go to pain management doctor if you have to. I find that they work with you much better than any neurologists. My pain doctor also have done trigeminal nerve block and facial nerve block on me. They both gave good relief, but only last maxiumum 1 day.

    Nina

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  • Posted

    I have to vouch for MVD surgery. it obviously isn't successful for everyone (nerves can be unpredictable), but I had TN for 10 years, had the surgery 5 weeks ago, and from the moment I came out of surgery I've had no TN pain and no carbamazepine. I had been taking 1600 mg every day for months on end.

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    • Posted

      Clint71,

      I wish to congratulate you on your successful MVD surgery.

      And I'm glad you had a good doctor who knew what they were doing but I did not I do not have the shots anymore but I am still getting some of the gum pain but it's not as bad as it was.

      If there are any one out there who would like to try to find out what kind had his done I still would be running to their place.

      Mine was done at Integris in Oklahoma City Integris Health Group doctor was Jeremy Phelps his PA is Lee Langley.

      If anyone has TN and Oklahoma City don't go to where I went not worth it.

      Clint,

      could you please give the name of the doctor and the name of the hospital and state and city where located again maybe someone else will be helped.

      God bless

      us and keep us and give us peace

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  • Posted

    My current cocktail of meds seem to be working, although not perfect.  Mornings are tough but at least I can talk and eat something little at night.  Tegretol, Baclofen and Gapapentine.  At least I'm avoiding the opiates, for now

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    • Posted

      MetsfanLisa,

      Opiates make me hurl, I have a load of allergies and most of them make me break out or don't the work, 4 example morphine is water to me, makes me hurls.

      Gabby/oxcarbazepine was beginning to work for me but made me a zombie.

      The sea bands r a Godsend, I was tired of taking nausea meds b4 meds.

      Showed to my general surgeon 2 day/ he said he had heard that they work, now all we need is a headband or clip on ear that will work 4 TN.

      God bless

      us and keep us and give us peace

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  • Posted

    Hi

    I live in the Chicago area and I've had TN for a few months only but I've had some of the worse pain in my life. I ended up in the emergency room when it first started. I'm going to Diamond Headache Clinic in Chicago but I've only had one appointment there and my next follow up is September 23rd. I'm taking Gabapentin as my preventative and Baclofen and Treximet as my emergency meds. Because my TN pain is on my upper right jaw, I recently discovered that if I eat soft foods, I am able to control the pain. For me the "chewing" of food is my main trigger. Sometimes brushing and flossing also triggers the pain but not as bad as eating hard foods. I pretty much only eat soups and protein shakes. The less I chew, the better I'm off. Once I learned that chewing food was my main trigger, I've been able to function a lot better at least for now. I'm currently looking into Mayo Clinic in the Chicago area and I know that there is another one in Madison Wisconsin. My aunt had TN surgery there a few weeks ago and she says she's pain free. I am not sure if these types of procedures are only short term though. I hope you get some relief soon because I know all about the anger and frustration with life living with TN. Good luck

     

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    • Posted

      Efraine34417,

      I was eating a lot of chobani greek yogurt to get rid of what my gastrointestinal doctor calls H. PiLori disease, you can look it up.

      So is TN heriditary, or something brought on by what we r eating as a family.

      Maybe we all need to change our eating habits. As for soft foods Yogurt (soft food) was making my trigger alone with chewing(hard food), drinking was a trigger expecially if I used a straw.

      No one in my family or my friends has ever heard of this h. Pilori or TN b4.

      Could it b in the yogurt?LOL

      God bless

      us and keep us and give us peace

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    • Posted

      Hi,

      H. Pylori is the bacteria which has been identified as the cause of stomach ulcers! An Australian scientist infected himself with it and after developing an ulcer took some antibiotics which then cured it, as a result of the paper he published he won the Nobel prize!! One or other of the PPI (proton pump inhibitors) which reduce acid production are also usually prescribed along with the antibiotic Metronidazole to treat these ulcers.

      I don't believe TN is hereditary, though I did once ask if any TN sufferers have ever had 'Brain freeze' from eating icecream as I did and so does my son, thankfully. though, he doesn't have TN.

      TN-Sucks, Opiods generally don't work well in combatting neuropathic pain. This is one of the main indicators for diagnosing TN. In my experience after taking my husband's Tramadol and MST in desperation they barely dented the pain. As soon as I mentioned this to my GP and described the pain he immediately said it's TN. Nerve pain generally is incredibly difficult to control. I see many patients who have such pains and they almost always have a combination of drugs to deal with it and rarely does this combination include opiates.

      Hugs to all TN sufferers.

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  • Posted

    1) Yes! When in constant pain, it's hard to feel any sort of good at all...

    2) No, have tried gabapentin, carbamazepine, tizanidine, baclofen, steroids, myoflex, hundreds of ibuprofen and Tylenol, a failed trial of prialt injected in my spine, failed MVD Surgery to my right side...currently I'm taking nortriptyline, and the baclofen is supposed to replace my hydrocodone...they say that the narcotics don't help, but in my experience, they are the ONLY thing that have sustained me the past 10 months. I was told that I'm "not your garden variety TN patient, " I went 3 months in the true tn type one and two...the constant boring pain, sharp shooting pain, perpetual burning and throbbing on both sides of the face, then came the added scary shock like pains...I was sure it was a tooth infection. ..my entire mouth suffered. By my forth doc, if they couldn't do anything for pain...I would have hit the ER immediately after...I was at the point of bargaining with God to please just end me. I think everyone has their breaking point with chronic, curled up in the fetal position, screaming crying outloud for God to make it stop pain...you'll go to extreme lengths to get out of the pain.

    As of now, try whatever you are up to...TN does not have an exact cure...all they can do is offer treatment options...good luck to you, and may your pain be under control.

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    • Posted

      Brooke39779,

      Brookie never think of ending it, pick up the Bible and read about JOB.

      I believe that we r here for a purpose on this forum, its something we need to do.

      Meanwhile lets just complain here. There is something in our story we r missing. What is it.

      God bless,

      us and keep us and give us peace

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