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Just diagnosed with trigeminal neuralgia

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jason15970
jason15970

Hi, new to this! I was diagnosed with this yesterday after suffering around 2 weeks with facial pain on the right hand side, behind my cheekbone and down my jaw, a constant 'dull' throbbing with occasional 'flashes' of more acute pain. It started just after dental work but the dentist looked at me twice again and confirmed it is not tooth related, even though sometimes it feels like the pain is hitting there! I have been prescribed Carbamazepine, one pill per night. Any words or advice or such are welcomed!

1 like, 38 replies

38 Replies

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  • jason15970
    jason15970

    Posted

    Many thanks for all the responses! Just to answer some questions, I am 36, and have never suffered any sort of pain like this or had mouth/nerve problems. The medication I was given, Carbamzapine, I have taken two tablets since I got it two days ago and I believe it is in 200mg quantities, per pill, if I am not mistaken! Has anyone else had success with this, and how long can I expect to wait before the pills kick in?
    • RachisCool
      RachisCool jason15970

      Posted

      For me it took ages but my dose only started on 50 mg and it didn't do anything so the doc changed me to another which also was hopeless. Now I am on lamotrigine and it's fine however, today it's not working so back to the doc's on Thursday to sort it out.
  • Glor888
    Glor888 jason15970

    Posted

    Hi Jason,

    My Dr started me off on 200mg x 3 daily and when that didn't do anything I ended up with 1200mg per day plus Amitriptyline 1 at night and that did the trick. I had chronic nausea but that subsided say after about two weeks or so.

    I can't really remember 20yrs back lol but over time I couldn't stand the nausea so I split the dosage right down to 25mg, then 50mg and so on until I reached my 1200mg a day. I chose to do that so I could gradually get used to it. After a few weeks when I was eventually on 1200mg I was fine and pain free. My TN disappeared after 9months.

    My Dr reckons its best just to take the 400mg straight off to get the nausea out of the way but I couldn't do it.

    i know every patient is different, you may find you'll be ok after days or couple weeks. If your still in pain increase your dosage. I personally swear by Tegretol just annoyed it didn't work for me this time around.

    Good luck and let us know how your progressing.

    Best Regards

    Gloriana

    • RachisCool
      RachisCool Glor888

      Posted

      My Doc said it's dangerous to start with a large dosage and to slowly increase it what difference that is I have no idea. I always feel a guinepig with my Doctor.
  • jason15970
    jason15970

    Posted

    Hi I hope you are all well! I am now on 2 100mg tablets of Carbamazapeine per day, and on Saturday I am off for acupuncture to see if that helps. A lot of websites mention the TN pains last for a few minutes at a time, but I find the pain comes in waves ie a throbbing pain usually that can last around a few hours before subsiding.

    Any thoughts?

  • genny25800
    genny25800 jason15970

    Posted

    mine   start  in  my   ears  i  am  very   depress   i  am  sorry   to   carbamaepine   will    help   it  has   not  help  me   i  100 mg   of  this   i  have  take  it  3  time   a  day     i  am  afraid  only   i  eneded  in  the  hospital    for  the   cabapitanm   but  evey  body   different     i  cry  every  day   i  wish   a  good  pill   out  there   that   help  this  ugly  pain  my  neouglist   the  doctor   told  my   husband    that  want  to  jump  off   the  bridge   3  times     commit   sucide   that   how   painful    this  the  tn    you  find   great   pill   tell  me   about  it   i  am  going   to   tried   mujurana   see  if  this  help   if  does   help  i  will   tell   everybody

    00

  • genny25800
    genny25800 jason15970

    Posted

    i  am  getting    the  head   attacks  right  now    there   started  to  beging  in  my   ears     i  going  to  take  the  percouet  which  does  not  help   then   have  the  tizzande   which   me  sleepy   i  hate        this
    • jason15970
      jason15970 genny25800

      Posted

      Hi Genny, how are you gettin on now with your medication and pain? I am currently taking 3 lots of Tegretol per day, a total of 600mg, which is still under half of what can be taken in one day. I also got prescribed morphine to take when I feel a bad attack coming on, but have not taken more than two per day, a total of 20mg, which is not much! Hopefully you are doing better?
  • jennywren2897
    jennywren2897 jason15970

    Posted

    Hello Jason,

    I know you posted a month ago so I hope the pain is beginning

    to show signs of improving. I have just been diagnosed this

    past week and been put on Gabapentin increasing every few

    days until the pain is under control. Time will tell. I really

    sympathise with you. I have never known pain like it in my ear,

    jaw, teeth and feels like I have bad tooth ache on the top and

    bottom three teeth. Like you the dentist said they are fine.

    Brushing my teeth starts it off as does eating or drinking hot

    and cold foods or having to chew all. I am on a soft diet now to

    help but it's still a struggle at times. The attacks happen at least 15 times a day and occasionally lingers with a minor pain afterwards. This is a horrible disease and I hope your Carbemazepine works for you. Do seek more help if it doesn't as there are other drugs to try.

    Sorry I can't be of more help There is a national UK organisation

    which I have joined for support and lots of information. You may find it helpful.

    Take care.

    • barbara4711
      barbara4711 jennywren2897

      Posted

      Hi Jennywren I have this condition too, had it on/off for many years and it did get worse. My GP prescribed Tegretol (Carbemezapine) I wasnt happy taking brain/mind altering meds, other meds I am okay with but not this kind...for me VERYgentle Trigger point therapy on the Massetter muscle on the inside of your mouth far to the left and or right side and again VERY!!! gentle massage of the Temporalis near to the temple but do look on the internet to find just the area to massage.  Why I say gentle massage is because that is all it needs to break the tension/trigger in that area,which incidentally is the strongest muscle in the human body and has to contend with a lot of stress and tension brought on by facial tension of many examples anger extreme movements of the jaw even with sneezing and yes the poor dentist whom gets the blame...we do have to open our jaw very wide and it goes into extension....useful to massage your jaw before going for dental work/check up etc...... I will from now on, I am going to my dentist on Wednesay for small fillings but he does know I have TN and can even see by my jaw movement the bony part near the ear....

      Sorry for the long drawn out messge...BUT TRUST ME, THIS trigger point therapy do it yourself DID WORK FOR ME, and I will do this immediately I have another episode.

      PS initally you will have a little more pain,(shows your are working on the right area) so be prepared take pain meds about half hour  BEFORE or whatever if you need to.

      just one more this I had replies removed because I gave a link to pdf file, which is not allowed so do look on the net for info and Please let me know how you feel about this suggestion.

      Regards

      Barbara

    • Valkyrie
      Valkyrie barbara4711

      Posted

      I have just looked up the massetter muscle you mentioned so i can try this myself. Looks good to me. Thanks for the info

       

    • barbara4711
      barbara4711 Valkyrie

      Posted

      Morning Valkyrie,

      I have looked in my book for the muscles that are involved in chewing and so are contributors to the pain when  tensed and have lots of knots, hence an attack is brought on by stress as well as other factors.

      We have to figure out for ourselves and a little bit of common sense and enquiring mind helps.

      Its what to do about those muscles, and its to massage them!

      but without knowing this, we do touch them and we get more pain.

      We have to massage it out GENTLY!!! does it.

      To give you an example when I massage the Temporalis a large flat muscle covering the a wider area of the temple I massage in tiny circles with my pinkie finger(little finger)slowly taking about 3 seconds with light pressure...............works for me, its a start but look to massage the

      LATERAL PTERYGOID with index finger in mouth, a clean latex hand glove is handy for this, prevents finger nail digging into muscle-also a pencil eraser(top of pencil) covered with something clean. i.e glove helps soooooo much.

      Doing these things can and does invoke some tenderness but gives massive pain relief... another muscle is the Diagastric and Mylohyoid so research on.

      I wish I knew about Trigger point release years ago it would have saved me a lot of WORRY,FEAR&PILL TAKING by the way it does affect the sinus'.... have a great day and I hope those who may be reading this give it a try , oh my god all that pain....let it go  AWAY AWAY AWAY!!!!!!

      peace to all

      regards

      Barbara

      ps I am beginning to get pain now in my  left cheek........tension! facial expressions expressing emotions. Pills no! paracetamol yes, relax it massage it. a few minutes all it needs

    • jason15970
      jason15970 jennywren2897

      Posted

      Hi Jenny, thank you for your post and sorry for the delay in me gettin back to you! I think, hopefully, I have been showing improvemen ts for my TN in the past 3-4 weeks. I have been on Tegretol for the past few months but it seems that only in the last 3-4 weeks has it really been helping. I am now taking 3 x 200mg tablets daily, so 6oomg in total, which I know is still under half of what can be taken on a daily basis. I was also given morphine (10mg tabs) to take if and when I had a very painful attack, and have been taking one, though a mximum of two in a day, if I felt an attack was on the horizon! Just now, any pain I am getting is not to the level I was originally getting, but it does seem to also be contained to late on at night or when I am in bed, so that is surely a positive? Anyway, I hope you are well and look forward to hearing how you are getting on!
  • tanz69
    tanz69 jason15970

    Posted

    Hi Jason, So sorry to hear you have TN, welcome to the group.  I was diagnosed 9 mths ago after a gum infection I got after I went to the oral hygienist for a routine clean (grhhh) and was prescribed Tegretol.  From the start I have taken it in a low doses which did the trick almost immediately. I would have taken anything at that stage to take the pain away. Luckily it worked. My Dr started me on 300mg a day and said take more if needed. I instantly read a lot of info on the drug and others opinions to obviously form my own and the general consensus was, people staying you become immune to it, so I guessed that scared the life out of me…! What would I do when that happened…! So I kept the dosage low and I’m now on 200mg a day and occasionally when I feel twinges in my face I take x2 instead of 1 at bed time and it sorts it out. I can’t cope with more than x2 at one time TBH, it just mongs me out. I think have a very high pain threshold thou, and its what you prepared to cope with. I have a full time job and kids that rely on me 24/7 so I don’t have time to feel pain or feel sorry for myself, I just have to get on with it. There were side effects to begin with, fatigue mainly, loss of appetite, blurred vision etc., but like I said anything was better than the electrics shocks in my face. Those have all gone now.  I have been pain free”ish” for about 6 mths now, but recently I decided I feel so much better I’m going to reduce it to 1 tab a day…BIG mistake, it comes back with a vengeance, I guess I was in denial that I was in “remission” if there is such a thing. I quickly stepped it back up to x3 and will reduce back to x2 eventually. I don’t want to be dependent on drugs forever but again, the message is pretty clear, its drugs or pain, end of! I’m not sure if anyone else suffers from neck pain with TN, in the front and the back? Trying to touch my chin to my chest is so painful.  I take co codemol for this every now again when I can’t bear the pain.  Alcohol is another factor, if I go to a party and I have a lot to drink I suffer the next few days, I read alcohol reduces the effect of Tegretol.  I dread the thought of the dentist, and I don’t think I will ever step into an oral hygienist’s chair again…!!

     

    Good luck and keep a positive open mind and make small changes.  If they work then go with them, its all trial and error at the end of the day. I can’t help but think this has been sent to try me, and trust me after everything that has tried me thus far; this was the last thing I wanted. It has made me stronger and every day I get thru another day pain free it makes me take stock of my life and my blessings. I’m 45. xx

    • jason15970
      jason15970 tanz69

      Posted

      Hi tanz69,

      Thank you so much for such a detailed reply! I'm 36 and was diagnosed about 4 months ago. I too am on Tegretol, I normally take 600mg per day, being 2 100mg around 4 hours apart for each double dose. I have on a few occasions with the pain went as far 800mg, but 600mg tends to help. After a pain free month until last week I started to get some pain again in my cheek until a few days ago, it seems to have settled. Due to the extreme pain I was having at first, the doctor prescribed me 10mg tabs of morphine, very small, but they have helped on those few occasions I've needed quick relief. I find two ten 10mg is too much and made me feel sick!

      Anyway, I hope to hear more from you about your experiences and so on with neuralgia!

    • tanz69
      tanz69 jason15970

      Posted

      Hi Jase

       

      Sorry I have not replied sooner. I decided to take myself and my TN on a little vacation…! TBH I was bricking it all the way up to actually taking off on the plane for a 2 hr trip to Portugal. I think the stress/anxiety never helped. My head kept saying “how will TN behave with altitude/cabin pressure”? I get a lot of earache (Temple) when I’m having a bad week, which then goes into my jaw and sinuses. I can’t press down on my nose or face too hard it’s quite fragile. (Luckily for me I don’t need to press down on it, apart from putting make up on lol).

       

      So the prognosis of cabin pressure and flying is: - …………??!! It was absolutely fine, Phew! The stress/anxiety of being in a foreign country having this condition was way worse I think, I had so many doubts running threw my head.  What if an attack happens where will I go? do I have enough medication with me? (I packed the whole box instead of a week’s supply lol) Will it ruin my family holiday while I lie in bed crying into a pillow and they out having fun? etc etc it drove me nuts. I’m usually quite a calm person, so I kept it all internalised of course and my hubby and kids knew nothing of my internal fears…! Something you learn to do when you in pain constantly is try not to moan too much, well I do! Grin and bear it eh! It was a relief to walk off that plane still intact physically if not mentally :o0)   what is that saying “ you spend more time worrying about things that never happen”! spot on in my case! Grhh!

       

      I’m pleased to report it was on the whole a nice holiday, apart from the heat.  I don’t know if it was my condition or not, but I had a pounding headache from dusk till dawn. My neck ached a lot too; it’s almost as if my head is too heavy to carry around on my shoulders. I spent more time in the shade and air con then I would have liked too, and drank a few more cocktails than I probably should have, but I also doubled the meds the whole week too (400mg and x1 500mg co codemol) due to the headache and I was getting sharp pains in my tooth when I had cold things such as ice cream.  In the past I knew when my attacks were going to happen, by how my teeth/tooth was behaving, usually if my tooth brush hurt over a certain area it was a sign that the electric shocks were on their way. 

       

      I’m happy to report that all is well. I have been back 4 days and I have a slightly less bad headache, more a dull throb, my neck is a killer but that could be stress of being back at work and sitting in a chair too long. I’m still taking 400mg but hoping to reduce that by the end of the week back to 300mg.  I have also reluctantly quit the alcohol and doing a dry Aug/Sept to see if that helps too (darn summer and ice cold beers after work…! roll on winter!)

       

      Like I said previously, I’m paranoid about the immunity.  It was funny how quickly I doubled up and it just worked, I can now see why people take a high dose and it becomes acceptable. I told you previously, I can’t take 200mg at once, it mongs me out, guess what? I was forced to on hols and it was absolutely fine, wt*? So now I know my tolerance for this drug is getting higher which is scary..! Don’t get me wrong, this works for others it’s just that I’m afraid to hit the 1200mg and then what? I’m not going down the surgery option, heard too many negatives about it, (leads to other conditions) but watch this space, when you in pain you will do anything..! I know its not a race or comp of who takes how much, its about me using my limit accordingly, age isn’t on my side and if I live till 70/75 (if I quit the beer/fags) then I might be on 1200mg by then! I’m just maximising what I have, whilst I have it basically!

       

      Hope you feeling a lot better and your incidences are getting less and less. Hang in there, and Oh I forgot to mention, I started Yoga 6 mths ago and it works a treat – a healthy mind and body has really helped me thru this.!! Got the whole family addicted to it :o)

       

      Note to self: - TN you just a distant memory and I’m beating you every day, you not gona get me as long as I stay strong, focussed and on top of you! (no one at works knows I have this by the way..!) I refuse to let it control my life.  Right now I’m in the driving seat.  To all of you reading this post, try to find your inner strength, get tough, get strong and as Michael Jackson said – “beat it”!

       

      Sending you all my best wishes and strength, and don’t forget to mentally high five yourself after every day that you have got thru feeling slightly pain free than you did the day before. If you still in pain know that it will subside eventually, you just need to change something you haven’t thought of or done before. Every day is a challenge with TN, make it your friend not your enemy and take it with you wherever you go, don’t let it hold you back!

       

       

    • tanee2
      tanee2 tanz69

      Posted

      Was flying ok? Im meant to be going travelling for 3months and the flight is 13hrs and i dont know how i going to get on with the air conditioning?
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