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Do I have Atypical Trigeminal Neuralgia ?

Posted , 12 users are following.

janine34099
janine34099

I have been suffering with facial pain since October 2011.  It seemed like toothache but moved from one tooth to another.  I went through all the general protocol of dentist, orthodontist, and GP.  My pain was intermittent and excruciating so I totally feel for what you describe.  My pain is totally at the left side, but like you can be in my jaw, cheekbone and eye area.  The pain went into remission and returned in 2014 at which time my GP diagnosed TN.  I was put on Tegretol which like you I struggled with so after a short time was then put on Gabapentin (Nurontin).  I stayed on this until December and then decided to come off as my pain had stopped.  However it resurrected its ugly head with a vengeance in May this year.  I have gone back to Tegretol and after a trip to A and E when the pain was at its worst, a constultant there put me on a higher dose (600mg) combined with Pregablin/Lycol (150mg).  This was amazing at coping with the pain, but OMG side affects are terrible. 

I have managed to reduce the Tegretol down to 200mg which helps but the pain is not totally eliminated with doing this.  However I feel I can cope better as the side affects leave me so tired and drunk. I also feel dizzy and my vision is affected.  I cannot look up or down or left or right quickly as my vision goes blurred.  I also feel lightheaded and like I am going to faint.  Some days I feel quite low and emotional, which for my "eccentric" personality, is not a nice feeling.  I am not sure if these side affects are part of TN or the medication.

Apparently my MRIs have revealed a vascular loop on my left side (where I have problems), but other than that all other tests seem fine.  I also experience pain in my left shoulder and arm and have also had it in my left leg.  This started in October 2014 with a sort of pins and needles sensation.  I don't know if this is connected to TN?  I know it isn't the medication as I have experienced it even when in remission and stopped medication between December 2014 and June 2015.

My last consultation with my neurologist was in July 2015 at which time she has said my symptoms are baffling her and not classical TN as my pain is 24/7 and not short sharp burst of a few seconds or minutes.  She wants to refer me to yet another consultant for a third opinion.  This first specialised in epilepsy so she was quick to refer me to the second one who specialises in MS.  Do all consultants want to pass the book?

I too would welcome feedback from anyone.  Thank you.

2 likes, 24 replies

24 Replies

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  • eddie13
    eddie13 janine34099

    Posted

    Hi Janine34099,

    I've had left side TN since 2007 with symptoms very similar to yours. I control them very well with Tegretol. I started low and have had the dose increased over time to now 800 mg per day - 4 x 200 evenly spaced every 6 hours. Evenly spaced is my key. I take nothing else. My only side effect is being tired. Good luck in finding your comfort zone.

    eddie13

    • janine34099
      janine34099 eddie13

      Posted

      Hi Eddie

      Thank you for your reply.  Do you mind if I ask if you were actually diagnosed in 2007 or later? I am nervous about taking pills and have heard that over time the Tegretol doesn't have the same impact at controlling pain. Also have you had repeated MRIs?  Grateful for your help.

  • jean62175
    jean62175 janine34099

    Posted

    Hi Janine, as I'm new to this condition I'm not much help to you, but I totally get some of those side effect.  You know the old saying "there is always someone worse than yourself" when I read people's posts I think I'm not so bad after all!  While I don't have pain all the time I have pins and needles either in my cheek, top lip etc., then I get a sharp pain, only sometimes, behind my ear and into my head, gives you such a fright that is what wears me down, if I had a broken leg or arm people would understand but when you mention neuralgia I get "heard of that alright" and they move on. 😡  I was advised to get a damp towel and heat it in microwave (don't burn yourself!) put it on your neck on the side of your pain AND I also found that if you have a bath, put Epsom salts in it, it is just the best thing ever.  On a lighter note!  My husband came up to ask me "have you gone down the plug hole" I was so long in the bathroom last night 😂😂 but it's lovely to feel normal (whatever that is!)  Keep your heart up as we will all get there. Jx 
    • janine34099
      janine34099 jean62175

      Posted

      Thank you for your reply and sharing your story Jean.  I will certainly try the hot baths.  Your kind words are greatly appreciated. xx
  • Vasoka
    Vasoka janine34099

    Posted

    As far as I am aware and have read, TN pain does not move around. Many neurologists, books and other literature on the matter specificially point out that for the pain to be TN, it needs to be stereotyped in the patient and if the pain changes in some way or the location of it changes, another diagnosis is more  likely the cause of your worries. Thus, if you have pain in all three branches (as you describe),  eye... cheekbone, jaw.. I am unsure if what you have is actually this, after doing my research on the subject. Hope you get to the bottom of it.
    • janine34099
      janine34099 Vasoka

      Posted

      Thank you Vasoka for taking time to reply.  At this stage I am grateful for any information so appreciate everyone taking the time to offer their story. 
  • tanee2
    tanee2 janine34099

    Posted

    Hi Janine,

    I am so sorry to hear of your pain.

    I found the more pain im in the tablets I take then more our moodier I was.

    All the medication alters our nervous system I felt constantly uncomfortable I didn't want to leave the house.

    The worst part is that, it is so rare so you feel alone and trapped inside your own head. (I do)

    I recently had a consultation with Londonds specialist pain clinic.

    I had nearly all but given up because once I get past / used to the side effects that make you just feel like 25% of yourself like a really groggy hangover. The medication seemed useless tegretol was touching it.

    The neurologist said to come off it and slowly reduce gabatentin and replace with lamotrogine and even though I'm only 2 weeks in to taking it the actual pain is totally gone! I take nortriptyline at night to help me sleep and improve my mood and I can really see the difference.

    I hope this helps,

    Tanee x

    • janine34099
      janine34099 tanee2

      Posted

      Hi Tanee.  Thank you for your reply.  I am so go grateful for receiving messages from people who share my story and pain.  I too have tried Gabapentin last year and it did work on the pain, but not without side affects.  This Pregablin also seems to work on pain but again not without side affects.  Your description is so true.  Can I ask how long you have been suffering as you say the drugs stop working on the pain?  I have reduced my drugs myself as I get fed up of waiting for my reviews as they are continually being cancelled.  Whilst the hung over isn't as bad, I do feel the pain returning during the day but I am reluctant to go back up with the medication as I felt like a space cadet all day. Like you, I didn't want to leave the house.  Janine x
    • wanganui
      wanganui tanee2

      Posted

      Hi Tanee,Great to hear your pain is almost gone! I'm happy for you..and what bliss!

      Which London pain clinic did you go to and who did you see,also have you ATN or TN ?

      Thanks!

  • danni46569
    danni46569 janine34099

    Posted

    I know what you feel like. I am on my third neur. But unlike you the reason for mine was Gamma knife. Some times it takes time to find the right dr. My GP is so great. He works with me to try and control my pain. I still have break thrus but he is always there. Have faith that you are not alone and someone is out there who will understand where you are coming from with all the pain. I pray you find that person soon.
    • janine34099
      janine34099 danni46569

      Posted

      Thanks Danni. It's so reassuring knowing there are other people out there who are going through this terrible "thing".  I don't even know what to call it as it isn't a recognised disease or illness and because of that it feels no one understands the pain it causes.  Thank you for your kind words of reassurance.  I hope I find a consultant as good as yours.
  • christian95748
    christian95748 janine34099

    Posted

    Hi Janine,

    I am so sorry to hear about your suffering... it must be hell on earth. If you don't mind I wanna share my painful story with all of you as I feel so alone with this condition. Nobody really seems to understand facial pain but it is so horible that I have been off work for 3 months...

    It all started with throat problems initially in May this year but as time went the pain moved upwards to my jaw/teeth, cheek and nose. Its a stinging, burning sensation and most of the day it feels like someone wants to pull my teeth out.

    I have been to at least 12 different docs and some just don't take me serious anymore. Yesterday I went to a Neuroseurgeon and told me that I am suffering from atypical facial pain which was a major relief for me since I have not gotten a proper diagnosis yet. He says it is a long road and since I am only 21 years old this really is a nightmare for me... taking 100 mg Lyrica for 3 days and 10 mg Amitriptyline for 6 days... do not see any difference. When will  I notice any difference? I just do not want to leave my room anymore and I ge realoy depressed. I fel so alone with this....

    Greetings from Vienna/Austria

    Chris

    • janine34099
      janine34099 christian95748

      Posted

      Hi Chris

      I am so sorry to hear of your pain and can only empathise with your situation.  On a positive, it does seem that if you only started suffering with the pain since May this year, you have done well to get a diagnosis.  I was suffering on an off since 2011 before getting a diagnosis in June 2014.  However, my neuro consultant is now baffled as to whether I have TN as my pain is not short sharp bursts, but more lengthy periods, sometimes 24/7.

      As far as medication goes, I take Tegretol (Carbamazepine) combined with Pregabalin (Lyrica).  I needed to compliment the Tegretol as it wasnt dealing with the pain.  I have to say this worked quickly for me. Unfortunately these drugs have to be introduced gradually due to side affects.  It works the same when coming off them, you have to reduce gradually.

      Hang in there and increase your dose slowly as prescribed.  If it doesn't work, I would suggest talking to your GP about Tegretol or Gabapentin (Nurontin) as these apparently work well too.  It's all down to which suits you as the side affects (basically feeling hung over, tired, and nauseus) are not pleasant, so it may take different ones before you find one that suits you.  Generally the blogs I have read state it takes about 2 weeks before you start improving so hang in there.

      Try not to feel alone, there are more of us out there.  Try looking at Trigeminal Neuralgia Association too.  They have some useful information on their site.

      Keep chin up!!!

      Janine

       

    • christian95748
      christian95748 janine34099

      Posted

      Hi Janine

      Thank you so much for your quick response, I really appreciate it. Well, I have "only" been suffering with this horrible condition since May, but damn does it feel like 10 years... it is kind of hard to imagine that you have been dealing with the pain on and off since 2011, you must be so strong. I really admire you!

      My Neurosurgeon is pretty sure that I do not have TN. He said the symptoms for TN are different than what I have. My pain is 24/7 and today was HELL for me. I begged on my knees for the pain to stop, my mum was crying too. I said I would rather die than living with this...

      But I will fight it. It is sad but it feels so good to know that there are many more out there suffering the same. I will slowly improve my dosage of Pregabalin and I hope I will see improvements in the next few days... I will talk to my GP if it does not work.

      If you don't mind, I will keep you posted! Together we will fight this beast!

      PS: Have you tried acupuncture? I heard it may help but it needs like 10 appointments before seeing any improvement...

      Take care

      Chris

      (sorry for my English, mother tongue is German)

    • ibrahim57343
      ibrahim57343 christian95748

      Posted

      Hi christian

      Sorry what yove gone throw hope your doing better now ,

      Iam 29 just going throw this horrible disease aswell , have you found any relief from any treatments or medications

      Dont feel alone there is always hope , if you need a chat or anything this forum has alot of friendly people 😊

      Hope your good , let me know as i need help and your more experience now iam haveing anxiety attacks everyday with this bad pain

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