Type 2 Trigeminal Neuralgia

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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. 

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  • Posted

    Have you tried trileptal (oxcarbaApine)? I have found that using that with baclofen and norco as needed control my pain (most of the time) with fewer side effects. I did not tolerate tegratol at all. I take 450mgs of oxcarb., 20 mgs of baclofen 2xs a day and norco (325/7.5) up to 4xs a day. It does manage things fairly well. Sometimes I add a tylenol to it to augment or replace the norco.
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  • Posted

    I can certainly relate to you regarding severe  constant pain - this happens to me quite alot.  Days of no pain does not happen.  What does happen is my facial pain will lower itself to a tolerable level and at any time my pain level will become severe. I have tried many different pain meds along with anti-seizure ones.  The anti-seizure ai cannot take.  Finally I am taking a pain med that will help me.  I had appointments with two pain clinics.  Because of these appointments, I went for several nerve blocks which made the pain worse and also Botox injections that were unsuccessful.  In 2009 I had MVD surgery with no results.  I have tried everything with no success.  Cannot work so most of my days are at home resting.  Type 2 is not familiar with me - I never heard this term before.  I am hoping that I did offer you some insight.  I am so sorry for the pain you are experiencing and wishing you all the best when you have your appointment at a pain clinic. 
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  • Posted

    To add a PS - the pain is never truly abscent - however it goes to a managable level that I can function with.
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    • Posted

      Jeej - read your earlier post and the meds you are taking I am not familiar with.  I do, experience a level from about 4 to 10 on a daily basis.  The pain has never went away.  Dealing with pain now for many years. As you mentioned, I do have days of manageable levels.

       

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    • Posted

      I'm in the US - I don't know if meds have the same names in the UK. The oxcarbazapine is an anti-seizure medicine and baclofen is a muscle relaxer-how ever you have to take them for a couple of days to get them in your system before there is a result. And then there's a period of adjustment as to howmuch and how often

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    • Posted

      Thank you Jeej for your post.  I live in Canada and I know that some medications offered in the US are not in Canada.  I have been on 5 different ani-seizure meds and had bad side effects from them - actally a couple were of no help to the level of pain I am experiencing  It's very interesting you mentioned a muscle relaxer.  I have been to many doctors, specialists and surgeons and not one has ever mentioned this med.  Wishing you many no pain or low-level pain days in your everday life. Please feel free to chat at any time.  

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    • Posted

      Hi Jeej - I live in Canada so I'm quite sure, as you stated, some drugs will be different.  You mention that oxcarbazapine is an anti-seizure medication.  I have tried five different anti-seizure meds but had bad side effects.  I am now on a pain med daily which is giving me some good days.  Wishing you the very best.

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    • Posted

      Hi Marlene - I had bad side effects with Tegratal/carbazapine. Then I was on gabapentin (neurontin) and now oxcarbazapine (related I guess to the carbazine) and they are tolerable. I don't know if you've tried them but if not, they may be easier on you.

      Good luck and be well - Write anytime. I hope you feel better

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    • Posted

      Hi Jeep - it sounds like all the meds you have mentioned are anti-seizure meds.  I had taken 5 different anti-seizure meds and the side effects were not good.  Gabapentin - I tried on three different occasions - was one of the worst.  It did not help with my pain issues and as well, would have just horrible nightmares.  Because of side effects, I can no longer take these meds.  I do, however, take one pain med - 8 pills total a day -and this gives me some good days which in turn can help with my quality of life.  Wishing you the very best and I would certainly like to keep in contact with you.  Hoping to hear from you soon.
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    • Posted

      Marlene im the same as you i am not having luck with the anti-seizure meds i am about to go off the gabbapentin and just stick to the pain medication, that does give me a good few days.
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    • Posted

      Hi Valerie - pain meds are the only meds I can take.  I am a highly sensitive person towards so many medications.  Today is a good day for me.  My pain level from a score from 1 - 10 is about a 4.  This I can deal with.  Have a great day and as always wishing you the very best.  Be sure to keep in contact with me.
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    • Posted

      Hi Marlene, i am having low pain day too. And i wish you a great day and the best as well. I am not going anywhere this is the best support i know of right now and i am greatful to have you to talk to. So thanks so much for being there.

       

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    • Posted

      Hi Marlene - Youre right - they are. I do take norco too which helps. It was becoming less effective at the dose I've been on and reduced it about 6 weeks ago - Which makes for frequent pain. I'm hoping by doung so I'll go back to where I was and have it be effective again. I did'nt want to be on anything harsher or at a higher dose than what I was on. I'm interested to know - What pain meds do you take?

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    • Posted

      Hi Valerie - thanks for your message and I'm so happy to know that you also are having a low pain day as well - isn't it great!  If you don't mind me asking but where do you live?  I live in a small province in Canada called Nova Scotia.  Just wondering because treatment practices could be different from country to country.  I wll always be here for you.  Keep in contact.

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    • Posted

      Hi Jeej - first of all where do you live?  I live in Canada.  The reason I am asking this is that I am not familiar with the med norco you are taking.  I have never heard of it.  I have a very high sensitivity to pain meds.  I have tried many and there is only one that can help me and give me some quality of life.  The name of the pain med is furinol.  I'm sure that you have not heard of this pain med.  I am also on an anti-anxiety med called Xanax.  I take this med when my facial pain reaches a high level and this med does help very much to settle me down.  Hope you are having a great day and please ask me any questions.  I can only answer based on my experiences and believe me I have been through it all.

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    • Posted

      I'm in California, USA. Norco is generic for vicodin. There is so much backlash and demonizing of it here - always feeling like addict when getting rx filled.

      Cannabis is legal here but I'm afraid to do it while on other meds because of testing and interactions. If the others fail alltogether I'll do it. I know its successful for some types of seizures.

      There's no way I'd attempt to back off the seizure meds while they work. The pain is incredible and relentless.

      I hope you are having a great day too - Nova Scotia sounds like a pretty place.

      Thanks for your input

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    • Posted

      Hi Jeej - thanks for your reply.  Many changes have happened here in Nova Scotia with regards to pain meds.  I had to have two appointments with a pain speciaist last winter and, of course, wanted to change my med.  After I left each appointment, I was crying because he would not listen to me.  Don't remember if I mentioned this to you or not but I have a very high sensitivity toward most pain meds.  The one I am taking works and gives me some quality of life.  The pain specialist did not want to hear this - what an ass (sorry).  I then decided to try the marjiuana and oil route.  Seen another specialist about getting prescriptions, got them, tried the marj and oil and it made me so spacy and sick had to stop.   Now, finally, taking the one pain med that works for me.  I went through a battle for about 3 months.  Opiods are becoming more and more of a "no no" irregardless what the patient thinks.  I just get so furious.  I have a wonderful family physician and she is always on my side.  Without her, I'm not sure where I would be.  Nova Scotia is certainly a beautiful place to live but for about 9 months out of the year can be cool and in the winter very cold.  I know many people who use cannabis for chronic pain and are getting along just great and in many cases have turned their world around for the good.  If you don't mind me asking - what is your health diagnosis?  Do you have TN?  I have a friend who has seizures and has to take anti-seizure med every day and it does keep her seizures under control.  Wishing you a beautiful day and days.  Look forward to your reply.

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    • Posted

      I do have tn. I've tried several procedures including mvd so its morphed from its original stabbing, fire, chewing on glass feeling and added the deepest most incredible hot-poker-in-the-ear pain. Unless I'm on the meds. Whats crazy now is if I press the side of my nose, I have referral pain in my ear and throat. Go figure! You are fortunate to have a good dr on your side. Thank goodness my pain mgt dr is as understanding as she is. My neurologist always makes me feel like he doesn't get it at all. None of the neuros in the med group I belong to know the condition outside of what they read in a book. If they have any other tn patients I'll be surprised. They say they do -

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    • Posted

      Hi Marlene, i live in california. As soon and i read your in Nova Scotia, the song came to mind  your so vain by Carly Simon, and the lyrics from that song Then you flew your Lear jet up to Nova Scotia

      To see the total eclipse of the sun..I love that song. Sounds like a beautifl place Marlene. Thats terrible the dr made you cry at the pain specialist and wouldnt listen to you. I just got a phone message for me to call and make an appt for pain  management and i fear i will go through what you did. I take tramadol its addicting, but its the only thing that gives me relief.

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    • Posted

      Hi Jeej - I thought you had TN but wanted to make sure that we were both talking about the same disease.  I also had MVD surgery in Nov 2009.  The surgery was unsuccessful.  The right side of my face is frozen as well as half my tongue which makes it quite difficult to eat and drink.  I always have to drink through a straw for fear of spilling liquid all over me.  When I eat food, have to chew on my left side.  Can only eat soft foods.  If I do happen to chew on my right side by accident this is a trigger point and I immediately get a very sharp pain to my face.  My ear is also affected.  Had ear infections that I never had before and at times it seems like the ear canal closes over and have problems with hearing.  before surgery I went for two treatments.  The first was nerve blocks.  I had 5 of them and only triggered the pain to become much worse.  The second treatment was botox injections.  I had 16 injections to the right side of my face and was so sick that I ended up in bed for a week.  had to leave my place of employment in June 2009.  I was heartbroken because I enjoyed my job so much.  I totally agree with you about your neurologist and neuros - they just don't get it.  I pray that I will never have to see either of them again.  I had such a strong feeling that they did not believe me and they would not even listen to what I would say.  When I tried to explain the pain, I am sure they didn't even listen.  I am so totally finished with them.  Keep in touch and let me know how you are doing.  Wishing you many good and pain-free days.  Do you ever go without pain?  I don't - my pain is constant.

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    • Posted

      Hi Valerie - thank you for your message.  I kinda giggled to myself when you mentioned a song by Carly Simon.  Yes, Nova Scotia is beautiful but can get very cold in winter.  We are now approaching summer, so days will be great with lots of warm weather.  Please do not fear having an appointment with pain management.  My experience with a pain specialist is because I got the wrong person.  Remember all drs are different.  I remember my very first appointment with a pain specialist and he was very caring and nice so don't be fearful.  My pain med is also addicting but when you take the amount prescribed by your dr you are fine. Keep in conact and would like to know how you got along with the pain specialist.  Wishing you happy days.  One question - is you pain constant or does it leave for a period of time?  Mine is constant - never goes away.

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    • Posted

      Mine never completely goes away, i can have some better days then back with a vengence. Marlene after i wrote you the lyrics to your so vain, i went to youtube and found the video of Carly Simon and played it 3 times it where she at marthas vineyard, and i sang right along with it. Havent done that in along time.

       

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    • Posted

      Hi Valerie - I always thought that I was the only one whose pain never goes away.  Sure sounds like we have the same in common.  It's just devasting isn't it?  But what is so sad, many people do not believe me.  I am still learning how to try and disregard negative remarks!  So you put your singing talents to the test tonight!  That's great.  Martha's Vineyard is a beautiful vacation spot in Cape Cod, Massachuettes.  Have a good night and let's keep in contact.  Another question if you don't mind - how old are you.  I am 61.  I ask this question because the average age of this disease in women is 50 and over.

       

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    • Posted

      I always have pain also. Varying degrees of it. I was pain free/med free the first time I had gamma knife surgery for two solid years. Then it returned and I had it a second time. Not effective at all. Back on gabapentin until no longer effective at the dose I was taking and the side effects. Had mvd which was a BIG FAIL. My regret is that I didn't have the mvd first when it would have had the biggest chance of success. For that I thank the dumbass surgeon who didn't tell me that was the best option when first diagnosed and meds arent effective. He specialized in gamma knife, not mvd so he pushed his agenda first.

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    • Posted

      Hi Marlene, it is devastating. Nobody really can understand what we go through unless they have gone through it their self. Pain worse this morning, spraying lydocaine up my nose and trying to put off taking a pain pill incase it settles down, but i probably will have to give in i cant stand it. I will be 55 in august. And its been one yr this month that the pain and nightmare started. I cant believe people dont believe you , it is sad. I isolated since this whole thing,after one friend said quit your crying. I do see my family, and thats my brother, and sister inlaw and my niece and nephew. They are supportive Well mostly my sister inlaw is the most supportive. But they are all the family i have left. My mom died a yr and 8 months ago, and i am still grieving hard for her, i love her more than anyone or anything .We lived together and always told each other how greatful were for each other we were lucky. But i am just sick without her. Oh i forgot on the friend thing another friend said to me you havent got that fixed yet? .
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    • Posted

      Hi Valerie - how was your day?  I went out this morning with my sister for a couple of hrs then had a sleep this afternoon.  I always find that I have to have a nap every afternoon because when you sleep you don't feel pain.  How is your pain level now?  I used to use liodocaine.  It was in a jel from and I would would it on the pain areas in my mouth.  I stopped it because it really did not help at all.  My disease hit me in early 50's so we relatively started with this disease around the same age.  It's so sad that people lack compassion - it really hurts.  Your sister in law sounds terrific - she must care for you so much.  I am so sorry about your mother - this would be so devsstating to you.  Both my parents are still with me - mom is 82 and dad is 83 - both are in good health.  Their social life far exceeds mine - this makes me happy.  I am married and have the most wonderful and loving husband a girl could ever ask for.  This is both our second marriage.  There is nothing in this world he wouln't do for me.  I feel terrrible at times because when I have high pain levels, I can be hard to handle.  I certainly don't mean this, but the pain just overtakes everything.  I know we have a time difference.  The time here is 8:10 pm.  Wishing you a wonderful evening and chat real soon.

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    • Posted

      Hi Marlene, Thats so nice you have a sister to spend time with and you still have your parents how wonderful!!!! and a wonderful husband now thats a blessing. Yes the lydocaine is a gel, i put it in a squirt bottle and shoot it up my nose. I never married, i could have many times but my parents had such a bad outcome it scared me to ever get married. I had a boyfriend but when the TN started i pushed him away, i didnt want anyone to see me in that pain. Today i went to jcpenneys to pick up an order, and other than that not to much, pain got worse and i had to take the pain medicine, and then got much better. My mom was 71 when she passed, The hospital forgot to inform us there was something on her lung and 6 months went by and it spread and then we found out, so i have a lawyer suing the hospital, I hopw we go to court so i can tell the story and get them to put a system in place so this never happens again, It was hard to find a lawyer to take the case as California has a 250 thousand malpractice cap, so the lawyer will take alot, its  not the money i want, i want to tell a judge and jury what they did, and for the hospital to say what they did and apologize and mean it, they wont because they have already denied it several times so much more to this story and its just upsetting to think about my mom could have still been here.
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