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Pain lasts for hours, not minutes? Is this TN?

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brettw777
brettw777

Hi everyone. This is my first post here and before yesterday, I had never heard of TN but I have all the symptoms. I got a CT scan and the doctor found nothing so he determined that it must be TN and upon further research of my pain location, it all makes sense. However there are some differences with my pain.

1. Everything I have read so far says the sharp knife-stabbing pain lasts for seconds or minutes. Mine just recently lasted all day! I am talking 12 straight hours of pain and much of it a level 9 or 10 on a 1-10 scale.  I am not making this up. It really was like that for the better part of 3 days which finally sent me to the ER to find out what is wrong. I am on some steroids and gabapentin for now and doing pretty good today. Anyone else had this much prolonged pain?

2. Also, I am reading that TN pain is triggered by light touch to the cheeks. That does not faze me. When I actually poked my finger into my lower cheekbone, that triggered a little pain but not the excruciating pain I had hours before when I did nothing. My face was even slightly swollen on the pain side.

Can anyone tell me if they think this is TN or possibly something else? Thank you.

Brett

3 likes, 18 replies

18 Replies

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  • army183
    army183 brettw777

    Posted

    Hello 

    This might be TN type 2 which is not always manifested by the type 1 symptoms ......also you may not have compression of the Trigeminal nerve root by a branch of the cerebellar artery ( which is the classical situation in TN1). 

    I don’t know if CT is good enough to image such a compression but the neurologists usually go for high quality MRI. 

    Good luck

    Big D 

  • amanda60033
    amanda60033 brettw777

    Posted

    I agree with the other response, TN type 2.  I had it for three years, two sinus surgeries and three root canals later, a doctor finally figured out it was TN2 of the 1st branch.  I am part of a facebook group that supports one another dealing with TN, you might try that as there is more information there and more people talking and discussing things. 
    • brettw777
      brettw777 amanda60033

      Posted

      Thank you both for your responses. From my research on TN type 2, I am reading that the pain is a lesser, long dull pain and not the sharp pains I got which were are off the scale painful and not at all dull. I feel like I am stuck between the worst of both worlds - extreme pain that lasts a  long, long time sometimes. I guess an MRI is in my near future. I am just really curious as to what an MRI would show. thanks again
  • Jayjay19
    Jayjay19 brettw777

    Posted

    Hey Brett I'm sorry to hear about your conditions I joined this site the other day also because my mother was just "diagnosed" with tn after a f*****g retard of a doctor did a simple oral surgery she suddenly has this nightmare of a disease that being said she had the same thing hours of pain and very harsh pain I was reading people saying minutes also but I have been here for 3 straight days taking care of her they put her on tegrotal that's usually one of the first meds that they try it's a anti seizure medication and she is like completely out of it but I feel like it's starting to give her some relief there are some crazy side effects but if you are lucky and are only dizzy and sluggish that's good as far as symptoms go I'm already looking at having surgery for her because medicines for this s**t aren't really the best but I pray to god you get better I never even knew this disease existed there's nothing worse than hearing you 65 year old mom crying out for her mother in pain and my grandma has been dead for 50 years good luck to you 

    • army183
      army183 Jayjay19

      Posted

      Hey Jayjav

      What a catalogue of disasters! 

      OK the tegretol is indeed the first port of call for TN, especially TN1. There are loads of people on this site and elsewhere who are on, or have been on, this drug. It has many adverse side effects but to very honest, we don’t care -  reduction of pain symptoms is what we want. Neurosurgical intervention and use of MRI to define the compression of the Trigeminal nerve root by a branch of the cerebellar artery would be the VERY BEST diagnosis your mother should get because the surgical interventions are very clear and the outcomes are well described. 

      Look forward to hearing further about interactions with neurosurgical specialists   

      Cheers

      Big D 

  • brettw777
    brettw777

    Posted

    jayjay , that is truly crazy. Right now, I am considering acupuncture and upon doing research, the results seem promising. Will keep you all updated. I will say that I had intense pain last night but only for about 10 minutes. You people who only get it for 2 minutes are practically in Disneyland compared to hours of pain!

     

  • Notrightnow
    Notrightnow brettw777

    Posted

    I'm sorry about the problems you're having.

    I've been on Gabapentin for trigeminal neuralgia and I do not think it has helped.  I also think it's more dangerous than what I'm going through with it being addictive and it's ability to cause seizures.  I got directions from my doctor to wean off it.  

    Every once in a while, I get stinging sensations but this is not as bad as the intense itching.   I get this several times a day and sometimes it's triggered by touch.   I have tried to get fresh fruit and vegetables into my diet and I use hot and cold compresses and an ice pack and this helps.   

    It also seems like Oregano is helping me.    

     

  • susan33651
    susan33651 brettw777

    Posted

    Hi,

    I have bilateral TN affecting all three branches of the nerve on each side. I get approximately 50 stabs and electric shock pains throughout the day most days in one or other of the branches, then every 4 weeks or so I get an epic pain-fest involving all three branches in a variety of combinations (eye and teeth, cheek, eye and cheek, teeth, cheek and eye, all three and so on) mostly on the left with a contribution from the right several times. Overall the pain lasts between 6-14+ hours but each individual branch is agony for a couple of seconds to 2 minutes. My diagnosis was confirmed by a Neurologist. Since I have been on Carbamazepine the attacks have been reduced from several hundred a day and the epic attacks have been reduced from 20+ hours. I have several of the recognised triggers. Today was an epic attack triggered by eating crunchy cereal for breakfast, I won't be doing that again! I sympathise with you.

    I use a combination of analgesia and a very hot hot water bottle. I hope you find some relief soon.

    X

    • army183
      army183 susan33651

      Posted

      Hello Susan

      What a grim tale - I really sympathise with you and I’m sure others on here do also.  You didn’t say how long you’d had this terrible condition - but at least it seems as if carbamaz has been some help. 

      Has your neurologist put you in for MRI to confirm any vascular compression of your nerve roots? I really hope that is a possibility for you, even if it is just on one side some of the surgical interventions would help you overcome your overall pain. Your bilateral TN must be appalling. 

      Please let us know if you’ve had or are having MRI or other imaging procedures to try and tie down a clinical diagnosis that can be acted upon and try to relieve your symptoms. 

      Keep in touch

      Big D

    • susan33651
      susan33651 army183

      Posted

      Hi,

      Thank you for your kind words and support. I've had it for about 14 years but didn't realise that it was TN until it got spectacularly bad about 2 years ago (I thought it was a variety of migraine! And me a nurse!!). I had a plain MRI years ago to rule out Menieres disease (lots of ear problems) and presumably they would have told me if there was a problem. I had one with contrast this Feb which was inconclusive 'without a cerebral angiogram' - it was done to establish whether I have any indication of inflammatory issues due to autoimmune disease (I have rheumatological issues too 🙄wink.

      And yes, wholeheartedly, the Carbamazepine has made a huge difference. I suspect these last few days will be the last for a while as my GP has increased my dose to 1400mg in divided doses.

      The Neurologist I saw was confident that I would respond well to the Carbamazepine and should I end up needing the maximum dose he would see me again. So far so good! 😁

      I'm very lucky as the support from family and friends, colleagues and doctors has been brilliant, I hope other TN sufferers have the same level of support as I do. I can't begin to tell you how truly hideous the pain is when it affects both sides at the same time ??🤕

      Best wishes to all.

    • gill32586
      gill32586 susan33651

      Posted

      Hello Susan,

       Can't tell you how good it is to find someone with a positive result. We get so many despairing tales on this site. Over the years I've had just about every medication available and some surgical treatment (although not MVD) . Most meds worked for a short time only. Now I'm back to the good old Carbamazepine only which has always worked to a greater or lesser effect for me but always with some pain breaking through. Right now I take 800mg and have had a four month remission with just one or two short pain attacks. This is the longest period time I've had without several attacks a day some of which have lasted over 1 hour and have rendered me completely unable to move from the spot.. I'm so grateful for this rest from the darned thing and clinging on to the hope that it's extended.. I've had so many ups and downs because of the unpredictable way it's affected me that I've tried to learn to take the remissions as they come. Hope springs eternal!

       I pray that you've found the right answer for you. Good luck, Susan and do keep in touch. It's really good that you told us of your success and also a great encouragement to the many who are still looking for their own answer.. 

        Gill

    • susan33651
      susan33651 gill32586

      Posted

      Thanks Gill,

      I have several hours most days without any pain at all! Some days are pretty much pain free, 'gasp'. I should add that I take 70mg Amitriptyline too, which helps enormously. I honestly don't know what I would do without these drugs. My hope is that before too long I can get to a point where I can reduce the Carbamazepine, but I seem to be playing catch up with it. It works well for a good couple of months and then I start getting more pain. It really is a B'stard of a condition! 😁

      So glad that you've found a respite from it. Here's hoping that it lasts!

      Best wishes

  • Notrightnow
    Notrightnow brettw777

    Posted

    I'm sorry you've had pain all day and hope it subsides.    I have itching that gets really bad right when I'm trying to fall asleep and it keeps me awake most of the night.   My medications are not helping very much.   

    My face is sensitive to touch but I find that there are times when touch does not do anything and some other times it sparks off an itch attack.   

    If I can hang on for about 60 seconds, it subsides but that is IF I can hang on.  It's the worst itch I ever had.

    I use hot and cold compresses that sometimes work and sometimes do not.   I use slices of ginger on the itch that sometimes work and sometimes do not.     I use oregano oil and Anbesol and some other things with Benzocaine.   

  • brettw777
    brettw777

    Posted

    I really feel for anyone who gets it on both sides of their face.  Lately, I am going most of the day with no pain and in the evening around dinner time (before or after), the pain kicks in for several hours and tonight did again around 10 pm after the first stoppage. I don't know how much more I can take this. I have no health insurance to cover anything really expensive. I am on gabapentin for now and have gotten some good night's sleep when taking before bed but tonight is gonna be a challenge.

  • brettw777
    brettw777

    Posted

    I have not yet had an MRI. Does anyone else know what else this pain could be if not TN?  Keep in mind that my face is not sensitive to touch (unlike most) and my pain is very intense for 1-2 hours at a time (unlike most). Thanks.
    • chloe83211
      chloe83211 brettw777

      Posted

      I personally am not sensitive to the touch and my pain can last hours by usually it’s around about an hour of intense pain and then just a dull ache. It’s now a pain I’m used to which is probably why I now class the aftermath a ‘dull ache’. My neurologist hasn’t diagnosed my with TN and basically has advised he thinks it’s general neuralgia some aspects on TN. I take pregabalin and amitriptyline daily. I’m finding it hard as I don’t have a set diagnosis but you could possibly be in the same diagnosis as myself. I’m 26 and first experienced the pain just before I turned 20. I left my own comment on this forum to see if anyone else is similar as I can’t find anything specific for someone who experiences some aspects of TN but then doesn’t tick all of the boxes. 
    • brettw777
      brettw777 chloe83211

      Posted

      Sounds like yours is more similar to mine than most people with TN. I have not had the long pain episodes that I had in the early days of this which was a little over a month ago. I have had some episodes that lasted an hour and some a little more and some a little less but thankfully, I have not had any 8 to 12 hour spans of time with incredible pain. Another person here told me that she started getting these pains and they ran in cycles for a few weeks and then the cycle stops for a few months but then they come back. I think the only trigger I have sound for me is laying on the back of my head on the arm of a sofa or something. That gives me one crazy headache in the back of my head that finally gets to my temple area but does not cause the stabbing knife like like pains in my cheek so it may be unrelated but I cannot lay on the back of my head On any arm of any sofa or chair.
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