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Type 2 Trigeminal Neuralgia

Posted , 6 users are following.

albrock31
albrock31

I have the more constant pain with if I'm lucky a few days with no pain and then a flare with sever constant pain that lasts for days. I'm taking Tegretol and I'm up to 400mg twice a day and on top of that Hydrocodone and Oxycodone for when I have severe pain. Today my Dr. he'll refer me to the pain clinic because upping the dose isn't going to help. Has anyone experienced Type 2 before and what should I expect at the pain clinic? I've been dealing with this for roughly 4 months and at times it feels like I'm losing my sanity and the Tegretol side affects or not pleasant, tired and can't concentrate at work....any help or just others experience would be helpful. 

2 likes, 54 replies

54 Replies

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  • valerie17599
    valerie17599 albrock31

    Posted

    I have TN2, i am the same as you i can go a few days without pain and then back with severe pain. The pain i have is left side and inside of nostril, and jaw and area where they took my molar out at and then did a bone graft. The worst of the pain is usally inside my nose. I am being referred to a pain clinis as well and i have no idea what to expect. New to this group.
  • Kay_Kelsey
    Kay_Kelsey albrock31

    Posted

    I was diagnosed in 2003 after going to doctor after doctor for three years.  I don't take gabapentin or tegretol, or any of the anti-seizure meds.  What I did find , by accident, was that the antianxiety pill Xanax helped me quite a bit.  I was on Tramadol four times a day for 15 years until you had to get your scripts from a pain clinic.  I tried a few clinics but they all made me feel like an addict, counting pills and urine tests,  Since Xanax helps anxiety it also seems to calm the nerves of my face.  I might take a Tylenol 3 once in a while, and a few more during flares.  But it might be something to talk to your doctor about.

    • Jeej
      Jeej Kay_Kelsey

      Posted

      Hi Kay - I'm interested that xanex helps. I've never taken it and tramodol makes me queasy. I'll ask about at my next appt. thanks for the tip

      Jeej

    • marlene36342
      marlene36342 Jeej

      Posted

      Ji Jeej - I just answered your first post and notice in another post that you are asking about Xanax.  Yes, please ask your family physician for a script.  It greatly helps me.  A very good med to take.
    • valerie17599
      valerie17599 Kay_Kelsey

      Posted

      Hi Kay, it seems the things that work alot of the times for TN2 are addictive, and they do make you feel like an addict when you ask for them. But for us with TN2 its a quality of life issue, and its not right. We have enough to deal with as it is.I take Ativan same family as xanax, and tramadol. But i dont think i could get by with just Ativan right now, i take it everyday for the anxiety that came along with TN2. But very glad its working for you.
    • marlene36342
      marlene36342 valerie17599

      Posted

      Hi Valerie - read your post on anti-anxiety meds.  You are 100% correct.  I take Xanax on a daily basis.  If I didn't have this med to take, my mind would never settle down because of pain issues.

    • valerie17599
      valerie17599 marlene36342

      Posted

      Hi Marlene, for me it is critical i have the ativan, i dont think i could cope. The stress that comes from the pain causes my anxiety to soar. I think we both suffer this way.
    • marlene36342
      marlene36342 valerie17599

      Posted

      Hi Valerie - you are so right. Severe pain can cause one to feel like you are not going to make it,  I cry (almost scream) with pain, get very dizzy that I am fearful to take a step in case I fall, and also my heart pounds so loudly, I feel like it's coming through my chest.  I never had a pain attack until I had MVD surgery in 2009.  Will send you off another post this evening.  It's now time to try and rest for a bit.

    • marlene36342
      marlene36342

      Posted

      aslso when I have these panic attacks, I end up on the floor until it passes.  Just terrible.  Wehn I said I never had a pain attack I meant to say panic attack - sorry
    • valerie17599
      valerie17599

      Posted

      Hi to everyone, just checking in and hoping that everyone is doing ok. I am having a worse pain spell right now but am glad i can come here and post. Trying to stay positive although very hard. Greatful that i have found place to share, and get support.
    • marlene36342
      marlene36342 valerie17599

      Posted

      Hi Valerie - hang in there.  My husband and I just got home from with a visit with two important people that are very close friends. As I mentioned before, because of TN friends have diminished real fast.  Just took a sleeping pill to ward of facial pain.  Hopefully,  will be able to sleep for a couple of hours  Horrible way to live!!  Will post you later.  I feel like we have become good friends and this means so much to me.  I thank you for your posts and friendship. You are a very "special" person.  Take good care and know that I  am with you!!

    • Jeej
      Jeej valerie17599

      Posted

      Hi Valerie - so sorry you are having a rough day. I hope things improve as the day progresses. Keeping good thoughts for you
    • Jeej
      Jeej marlene36342

      Posted

      Hi Marlene - So sorry! Please talk to you dr - Pain increases blood pressure because of the stress of it. Even if high blood pressure isn't normally an issue, it is induced by severe pain and can cause what you are decribing. Please look into it and Feel better - get some sleep. Will check in later

    • marlene36342
      marlene36342

      Posted

      Hi Valerie - how are you feeling now?  Better I hope.  Had a good rest and pain level has decreased.  Chat soon,
    • valerie17599
      valerie17599 marlene36342

      Posted

      Hi Marlene, i think its wonderful you can get out and go see friends. I pushed mine away i dont like people to see me this way, but it may be a mistake my isolating but i keep doing it. Yes i look forward to sleep a temporary escape from the pain, and it is a horribe way to live. Yes we are good friends, and it means alot to me too. Its been very good for me to share and post here. You are very special too.
    • valerie17599
      valerie17599 Jeej

      Posted

      Hi Jeej, thank you. Yes the day got better thank goodness. Thanks for keeping good thoughts that means alot. How are you doing?
    • valerie17599
      valerie17599 marlene36342

      Posted

      Hi Marlene, doing a little better now. Glad you had a good rest and thank goodness your pain decreased. Yes chat soon.
    • valerie17599
      valerie17599

      Posted

      I wish by making a new post, it didnt require a whole new thread/or different page of posts. I like this one i feel we are all making good friends here and dont want to lose our group here.. I think we have a good support group here and dont want us to all get scattered so for now i will post or reply to one of my posts, so not to start a new discussion that seems to start a whole new page. Hope everyone has a better/good day today. I have alot to face coming, my almost 17 yr old cat madeline, i notice is drinking alot more water, and losing some weight. I am scared as i dont want to lose her. She has been my everything since my mom died, and since i have isolated she really is my contant companion. I lived with my mom and it was the 3 of us and i am going to be the last one here alone. I am just going to have to pray for strength i dont know how much one person can take. Life certainly is hard.
    • marlene36342
      marlene36342 valerie17599

      Posted

      Hi Valerie = My cirdle of friends is very limited.  I can go weeks and not see anyone.  It's very hard to make plans even to go shopping or make appointments.  After 11 years, it still not does not get better.  I was out this morning with my sister for a bit.  We have a love/hate relationship.  She can be very difficult.  We are the total opposite of one another.  When we get along, it's good, and when we don't, can be brutal.  How about we become fb friends.  I can share so much more with you.  My last name is Singer.  What do you think?  It's been a beautiful day day with lots of sunshine and now getting really cool.  I read in one of your posts that you have an elderly cat.  How is he/she doing?  Getting old is not pleasant.  Hope you are feeling better than yesterday morning.  Chat soon my friend

    • Jeej
      Jeej valerie17599

      Posted

      Thanks for asking! I'm doing pretty well. Its always present and an annoyance (often depttessing) but aside from that debilitating pain is controlled. I'm fortunate in that the meds work for me - to a degree - and I'm able to function. Every time I have a rough day I'm afraid I'll have to start a different regiment. Good days and bad days - today is a good day. The worst thing about the meds is they dumb me down a bit. Not as spontaneous as I used to be and don't have that get-up and go. Hard to get motivated.

      I am glad you feel better - have a nice evening and stay in touch!

    • valerie17599
      valerie17599 Jeej

      Posted

      I was writing toy ou and somehow i lost it, so hope this isnt a double post. I am glad to know your doing pretty well i have to agree with you on everything you said.and so glad you had a good day today. I will of course keep in touch.
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