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TN Remission????

Posted , 7 users are following.

JavaJ
JavaJ

Hi there.  2 weeks ago I had what my doctor & dentist believe was an episode of TN.  I was put on Lyrica, only 2 x 50mg per day, I did up it to 75mg x 2 because I had some pain still.  For the last few days I have been feeling really good with no pain to speak of.  I'm just so groggy from this medicine, I had a week of holidays from work so the timing was good to adjust to the medication but I'm still not myself & I have to go back to work in a few days.  My question is:  How would you know if you were in a remission if you're on medication?  Im wondering if I should try to stop taking this for a day or so just to test the waters.  If the pain starts up I can just start taking the meds again.  I have a facial pain specialist appointment next week, so he may have some definitive answers as to whether this is indeed TN.  Just curious about how others deal with their condition in the event that they may have remission.  Thanks so much to everyone who takes time to lend their experiences & wisdom.  This forum is a great resource for people like myself, I'm finding it all very hard to understand & accept.  Cheers

0 likes, 14 replies

14 Replies

  • anyazora
    anyazora JavaJ

    Posted

    My 2 cents. I’ve had a really awful case of TN since December and haven’t left my house except for drs appointments. I’m on several medications and have been trying different nerve blocks. Back in February I had six blissful wonderful perfect days of absolutely no pain. I thought I am in remission. The nightmare is over. I started seeing friends, going back to my life, taking my daughter to regular normal things. I asked my doctor to take me off my medications. He laughed. I thought, why is this man doing that? Why would I stay on this strong medications when I am not in pain. I took tegretol, gabapentin, baclofen and methadone. He said we can start lowering them one by one. I fought with him and he reluctantly lowered everything. Well six days later I was back in the horrible place I was before. I haven’t gotten any significant relief since besides the decrease in pain level from the medications. I would say, if you are lucky enough to be in remission, give it some time it may be the medication. You can always stop it in the future, but don’t jump the gun like I did because I had to go back up on everything and it took time.
    • JavaJ
      JavaJ anyazora

      Posted

      Hi Anyazora,  Thank you for your advise.  I'm feeling very impatient with all of this waiting & wondering.  I know what you mean about feeling like this is over when the pain subsides.  I've been running about with my kids and catching up on all of things I couldn't do over the last couple of weeks.  I think you're right about giving it a bit of time.  I have an appoint in a few days with a specialist who should be able to give me a definitive diagnosis.  If he feels it is in fact TN then I'll have to have some tests to rule out causes etc....I sure feel for you, this has only been going on for a couple of weeks for me.  I hope that you have some blissful painfree days soon and for a very very long time.  

    • anyazora
      anyazora JavaJ

      Posted

      Thank you smile and I’m so glad you’ve found some relief. I hope you get the answers you need soon.

  • brock1998
    brock1998 JavaJ

    Posted

    JavaJ, when I started by battle with TN I found it hard to understand & accept too.  I want you know that if this  is diagnosed as TN there is hope and life after this  debilitating pain. In May I will be two years pain free from my  Microdecompression  surgery. If I can be of any help to you please let me know. 

    P.S. the deciding factor for my surgery was the side effects from the medication I was on. Two weeks before surgery I was on 1400mg of Tegretol. I will be praying for you. 

    • anyazora
      anyazora brock1998

      Posted

      Wow Brock, so happy for you. I can’t imagine 1400. They took me down from 900 Bc of the hyponetremia (sp?) low sodium which was putting me at risk for seizures and if had dropped much more, coma. I cried  and begged because it was working. Finally met them halfway taking high amounts of sodium pills but can only take 600mg a day. It’s not working. I’m considering MVD but doesn’t work as well on MS patients and am fearful. Would love to hear your experience since it was positive.
    • JavaJ
      JavaJ brock1998

      Posted

      Thank you Brock!!  So happy to hear your surgery is a success.  It really is a waiting game right now for me.  I don't like waiting for answers, I want to know NOW. lol.  I suppose if this is TN I'm lucky that the doctors are on the right track on my first go around.  So many people seem to struggle to even get a dx let alone treatment.  I think I'll hold off on my trial run without the meds until I've seen this specialist next week.  It is promising to know there are many folks finding relief with surgery.  I sure don't want to be on these types of meds for years on end.  Prayers for you too.

  • chris78446
    chris78446 JavaJ

    Posted

    dont stop taking your medication cut it down very very slowly 
  • vicki78970
    vicki78970 JavaJ

    Posted

    Java So sorry to here you were diagnosed with this awful disease.

    I also 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.

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

    I would ask your Dr. if you have questions about going off meds.

    God bless you & I pray you get pain free soon!

  • michael64483
    michael64483 JavaJ

    Posted

    Been dealing with this for 20 yrs. Have had 4 surgeries. The pain usually goes into remission when I am on meds.

    ?Used to take 2-3 weeks to go into remission. Now it seems to go 4-6 weeks. Most of my pain is in my tongue & lips, shooting into my left cheeks & ear at times. In the past 40 days I have lost 20 pds due to eating yogurt & drinking ensures. I force chopped spaghetti & chopped beef down with excruciating pain. After a bite or two the pain starts giving up. I take Tegretol, Gabapentin & 72 hour Fentanyl Pain Patches. I quit all but the Tegretol once remission is assured. I also pray to my God as do friends. The pain is a demon inside your body & the other angelic parts of your body & mind need to drive them away. The spiritual side of looking at this may only be a minor help, but you take whatever help you can get. Good Luck. ps-sometimes you get a false remission. I suggest staying on whatever medicine until you are in full remission for at least 3 weeks.

  • astrogirlbunny
    astrogirlbunny JavaJ

    Posted

    It can take up to six or even eight weeks for those groggy side effects to go away. Those meds are not meant to be off and on. If you are feeling better, do not come off of them. I totally understand what you mean about your mental state. If, after 6 weeks, you still can't think, you might want to ask about a safe mental stimulant to pair it off with. But be careful because those can also cause TN to be more sensitive. Even if it's just general face pain and your face nerves have gone a little nuts, Lyrica helps because it works on nerves. 

    For me it's a matter of balance of things and balance of medications. And knowing my limitations. And knowing when I work best. And you need to stay on Lyrica for it to be effective. If you go off and back on? It'll cause the groggy side effects to restart again, your body getting used to them again. Plus Lyrica is stronger than gabapentin. Neither shouldn't be a stop/start when on higher doses. But even more dangerous when on Lyrica.

    Drink plenty of coffee and get plenty of sleep until you see your doctor and stay on the meds until then.

    What I also find that helps is giving myself plenty of time in the morning to get ready because I take longer. And start keeping to-do lists. And using your smart phone for alarms to remind you of things. Start using tools to be your second brain until you get used to the side-effects or something else changes.

    Good luck and keep us posted. And remember - if this medicine is actually working for you, you are lucky! There are many people who are not so fortunate that have found any medicine to work. Or some are unable to have access to Lyrica.

    • JavaJ
      JavaJ astrogirlbunny

      Posted

      Thanks Astrogirl (luv the name).  I had a big reminder on Saturday that this hasn’t gone into remission.  Had a really bad day with pain, several attacks.  Not quite as bad because of the low dose I’m on.  My GP Told me to up the dosage of the pain breaks through, so that’s what I did. I have a specialist appointment in a couple days, so that will give me some answers.  Then start with the ruling out process, to see if they can find a cause for this.  Anyhow....feeling a bit better today.  Thanks so much for the advice.   I’ll let you know what the specialist has to say.  Cheers!!!
  • hsisk24
    hsisk24 JavaJ

    Posted

    Hello! I’m hoping your pain is still gone! I knew I was in remission when I didn’t have any pain at all. I never completely got off medication until I had my surgery but my neurologist always told me that if I was experiencing no pain I needed to taper off my medications. Once I got down to a certain dose the pain always came back. Within a week it was full blown again. But when I was in remission I enjoyed every bit of it. smile
    • JavaJ
      JavaJ hsisk24

      Posted

      Hi again, thought I'd let you know how my specialist appt. went.  He diagnosed TN too.  He suggests that barometric pressure affects TN significantly.  Especially Spring & Fall.  He predicts that I will experience another attack in the fall.  (nice to have a heads up I guess)  In the mean time he said DO NOT stop taking the Lyrica for at least a couple more months and then try to see if the pain has gone into remission.  I guess I just have to deal with the present and not worry about the future because no one know what that will hold.  I am feeling mostly pain free for the time being.  I just have to take things as they come.  Take care & thanks again for the support.  

  • vicki78970
    vicki78970 JavaJ

    Posted

    Great news about the pain & attitude! Take one day at a time. Thank you for sharing! smile

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