TN suspected, so confused!!!

Posted , 5 users are following.

Im not sure where to start.  I started to feel pain in the left side of my head exactly one week ago.  It wasn't shocking or stabbing, just achy jaw temple area.  The same the next day with a bit more pain coming and going.  On the 3rd day I went to the ER as I was experiencing stabbing pain in my teeth, jaw, temple, facial numbness on left side only.  It happened multiple times during the day.  The description of TN was exactly what I was experiencing.  The ER did nothing except rule out a stroke.  The doctor suggested it was TN & offered pain killers (no thanks).  How little I knew of TN one week ago & how much I know now.  I made it thru a couple of days with sporlactic attacks then went to my Family Doc.  She immediately suspected TN & prescribed Lyrica & referred me to a neurologist (how long that will take I have no idea).  The pain was excruciating that evening, bringing me to tears, it felt  like my teeth we all cracking.  A sip of warm tea would send me into a severe attack. So off to the dentist because I felt I should rule out dental issues to be sure.  I have a great dentist and she was quite certain my teeth were all healthy and she felt TN sounded plausible.  So referral to a facial pain specialist, who treats specifically facial nerve disorders.  So now I just wait for the appointment.  What confuses me is that now I'm 7 days out and have been on Lyrica for 4 days.  The pain is constant, not stabbing electrical pain but achy throbbing tender pain in lower jaw. The occasional zap. It hurts to open my mouth to eat and my rear molars are very touchy.  I have not had a stabbing attack though.  But this achy constant discomfort is there.  Advil seem to help it a bit which makes me think this isn't TN, as Advil shouldn't help much.  Any words of wisdom would really help.  I am really scared that this could be from something more going on (MS, Tumour)  Or that I may have a whole new normal to adjust to.  I can't imagine living with this for years on end.  I feel so much compassion for all of you who suffer with this.  Cheers

0 likes, 30 replies

Report / Delete

30 Replies

Next
  • Posted

    I really hope and pray TN isn’t what you have. It’s awful. I suffered for 6 years with it and eventually ended up having the MVD surgery. I’ve now been pain free for 7 months. Yay! Anyways, I would definitely see a neurologist ASAP. They will be able to determine if what you have is TN or not. I had a few MRI’s done to rule out brain tumors, etc. The best medicine combo that worked for me was Tegretol and Lyrica. Since Advil has helped the pain I’m not sure if what you have is TN. Nothing like that ever touched the pain I had. I do hope you get relief and you find out the root of your problem. Good luck!
    Report / Delete Reply
    • Posted

      Thanks so much for the reply.  I sure hope it isn't TN too.  It is really strange.  It seemed textbook last week but now with this constant ache and some relief from Advil I'm not so sure.  I live in Canada so wait times for specialists can be dreadful.  I am going to look into going through a private clinic & paying for an MRI just to get on with things.  I think it may be money well spent if only for peace of mind.  Does Lyrica dull the pain down???  I'm wondering if the achy feeling is just the Lyrica dulling down the nerve pain??  

      Report / Delete Reply
    • Posted

      I think Lyrica helps as a nerve blocker to where you aren’t feeling the pain as much. I never had a dull achy feeling from it. When my TN was flared up it was stabbing/shocking pain in my face. My MRI’s all came back completely normal. They didn’t know the root of my problem until i had the MVD surgery done. I actually had blood vessels pressing on that trigemial nerve in 2 different places and the neurosurgeon went in and moved the blood vessels and wrapped the nerve in Teflon. I’ve heard of the pain coming back after MVD but I’m hoping mine stays gone. I wouldn’t wish that kind of pain on my worst enemy. I hope you don’t have to wait a long time to see a neurologist! 
      Report / Delete Reply
    • Posted

      I'm going to ask my GP how long the wait for Neurologist will be.  If its months away I will go to a private clinic.  I'm going to lay low till next week and see how things are feeling.  The Lyrica definitely helps but I'm feeling pretty loopy.  Great for lying on the couch watching Netflix, but not if you want to be a productive human being.  That may improve once my body adjusts to it.  Cheers & thanks for reply

      Report / Delete Reply
  • Posted

    There are 3 branches to TN, hence Tri. Lower is V3 Mandibular branch. That's my problem & probably yours. MS not probable. Get a doc to put you onTegretol, 300 to 600 mg daily. This is standard med for TN. I've had 4 surgeries over 20 yrs. What holds in check lately is 72 hr mcg fentanyl pain patches. Still hurts often, but less painful. You may have to threaten doc to get that prescrip, so you need doc willing to research & prescribe cutting edge meds

    Report / Delete Reply
    • Posted

      Hi Michael.  thanks for taking the time to reply.  I'm going back to my GP next week to review the medication & how things are going.  I feel really loopy on this Lyrica, only on 100mg, spit into two doses.  My doctor said to increase if my pain wasn't under control.  I'm not functioning very well on it.  May I ask if you have the type of jaw pain and stiffness constantly???  The severe attacks have subsided, Im just left with this dull throb in my jaw with the occasional  jolt that is startling but not excruciating like last week.  Hate not knowing what is going on in my body!!!  I will talk to my GP about Tegretol.  Sorry to hear that you've been enduring this for so many years.

       

      Report / Delete Reply
  • Posted

    Hi there Sorry to hear about your experiences and hope things improve for you. I have suffered from TN for about 5 years and currently keep the pain at bay by taking a fairly high dose of gabapentin. I was first prescribed carbamazepine (Tegretol), it was an excellent drug as it controlled the pain but its side-effects were too severe hence the drug change. Your story is very familiar and the key things I've learned are 1. General practitioners are not specialists and shouldn't be blamed for not be able to give a definitive diagnosis. (Of course, they will prescribe painkillers because you're in pain!)

    2. Dentists are more familiar with facial-maxillary disorders and are usually aware that neuralgia covers a wide range of pain problems. 3. TN is not easily cured and usually gets progressively worse over time. 4. Everyone is different and some may adopt a painkiller regime that keeps the symptoms at bay. 5. You need to see a neurologist and get the best advice available 6. Scans and finally surgery may be the best option if the drugs fail to help.

    TN is difficult to pin down, it's elusive and affects people in many different ways. Don't blame the system or individuals in it. This is a complicated disorder and the medical profession know that. I'm seeing a neurosurgeon in a months time to consider the options available that might secure a permanent cure; an operation or procedure that would mean I could stop taking drugs for the rest of my life. I'll let you know the outcome. I have pain running down the left side of my face now, as I'm writing to you, but the outcome of an operation could mean a permanent cure or partial paralysis! In short, there's not a 'magic bullet' out there to cure this disorder. If someone knows different, please write in asap!! 

    Report / Delete Reply
    • Posted

      Surgery isn't always permanent relief for this pain. The nerves do grow back & it can be worst. 

      I am so sorry for your pain! I do understand 100 %. I have spent countless nights & days with the same pain

      I have tried many different things including acupuncture only to find temporary relief.

      Then a few people on this site suggested taking B 12 & a B complex. If I do get more pain during the day I take 800 mg of Turmeric. (A spice you can buy at any store) I was desperate & tried anything & everything. These take the pain away during the day with out side effects  from pain meds.  At night I take 1/2 a Carbamazapine so I have no pain.

       

      Report / Delete Reply
    • Posted

      Hi Colin. If this is TN I guess I should feel lucky that the emerg doc & my GP both hit on TN right away.  I've read so much about people going many years suffering before finding the cause.  My dentist had a quick look at me agreed it sounded like TN but referred me to a oral specialist in my area that deal with facial pain & nerve disorders.  He is apparently the "expert" on the subject.  I do have a referral to a Nuerologist, that could take month though.  It is so elusive.  Although there are text book descriptions it does seem each person experiences this disease with so many different manifestations.  I'm just waiting and hoping that it may be something else.  however the more I read the more worried I am.  I really should ban myself from Google, but need to find an answer for this keeps me searching.  Currently I have a constant painful ache in the left side of of my face & my teeth.  Interestingly I am able to sleep through the night, but as soon as I wake up, there it is.  I've had a severe tooth issue in the past,  It feels similar but different (if that makes sense) and there was no sleeping with that pain.  Its a waiting game for now.   I so appreciate your reply, it is comforting.  

      Report / Delete Reply
  • Posted

    I am so sorry for your pain! I do understand 100 %. I have spent countless nights & days with the same pain

    I have tried many different things including acupuncture only to find temporary relief.

    Then a few people on this site suggested taking B 12 & a B complex. If I do get more pain during the day I take 800 mg of Turmeric. (A spice you can buy at any store) I was desperate & tried anything & everything. These take the pain away during the day with out side effects  from pain meds.  At night I take 1/2 a Carbamazapine so I have no pain.

    I hope you get the same experience! God bless you!

    Report / Delete Reply
    • Posted

      HI Vicki.   Thanks for taking the time to reply.  So much support here, it is so good to speak to people who understand this.  I have read many folks talking about B complex, it sure can't hurt to try.  I have a friend who recommends Tumeric for just about any ailment you can think of.  I'm sorry you are dealing with this too.  It's just so unbelievable that 8 days ago life was just normal and then boom this happens.  I've been so confused and in shock all week.  It really turns your life upside-down.  For me, since there is no definitive diagnosis as of yet I will hold out hope that it is a one off thing that may resolve itself.  God Bless!!!

      Report / Delete Reply
  • Posted

    In response to Vicki, you are absolutely right, surgery or some other procedure aimed at targeting the trigeminal nerve, is no guarantee of permanent relief. I shall explore all options with my neurosurgeon, who I hope will advise me as to the best way forward. The operation that seems to be most successful involves fitting insulation between an artery and the worn area of nerve. The aim here is prevent the blood vessel and nerve making contact with each other - the likely cause of pain - not removing or destroying the nerve. So, regeneration of the nerve is not a consideration, in this case, as it remains intact and fully functional after the procedure. The op does, however, involve surgery that enters the brain area and this can lead to potential complications itself!

    The idea that turmeric can give pain relief from TN seems extraordinary but I'll give it a go. I use the spice a lot when cooking curries but I guess it's a case of taking turmeric tablets. In the end, this is a pig of a disorder that we could all do without. Sharing stuff is a comfort and there are worse diseases out there, so we need to stay positive!

    Report / Delete Reply
    • Posted

      I had this surgery you’re referring to and it was a Godsend. Will it last forever? I have no idea. But I have been pain free for 7 months and it’s been amazing. I’m also off all the medication and have been for about 5 months. I did a lot of research before I did this surgery and MVD is the most successful with TN. But when you’re suffering with this kind of pain for years on end and maxed out on all medication, there’s not much you wouldn’t do. I was desperate but I’m so glad I did it. I’m 24 and he wasn’t thrilled to operate on someone that young but I’m forever grateful he did. There are a lot of complications that can go wrong as far as hearing loss and double vision. I experienced muffled hearing for about a month but that was the only side effect I experienced. I hope you go with whatever you feel is necessary. Good luck!
      Report / Delete Reply
  • Posted

    Thank you hsisk24, that's really helpful. May I ask where you had the operation and the approximate cost? I totally understand if you feel unwilling to share that information. Like you, I'm weary of taking drugs that leave me tired all the time, always functioning below par and wasting good years of my life in a permanent state of 'getting by'. Colin

    Report / Delete Reply
    • Posted

      I live in SC so I had my surgery done at Greenville Memorial by Dr. Kanos. He has done well over 200 of these surgeries with an 80% success rate. I wasn’t about to let someone operate on me that hasn’t ever done this surgery! Lol. I’m not 100% what the cost was before  insurance. I want to say around $40,000 or so. But I have insurance so I paid basically nothing for it. The medications are great when they work. But when you’re on so much medicine and it’s not working and it makes you feel like total crap, it’s just not worth it. My body eventually got used to the medicine and there was nothing else they could do except for surgery.
      Report / Delete Reply
    • Posted

      Hi hsisk,  I have a question about meds for you.  It sounds like you’ve tried many before surgery.  I’m starting to have relief with the Lyrica, just mild ache now and a few twinges.  It gets worse as I’m getting close to my evening dose, but settles once I take it.  The question is about Lamotrigine.  I have been on Lamotrigine 200mg for a few years for a mood disorder.  It has worked wonders for me in that area.  Why would I get an episode of TN if I’m already taking Lamotrigine. I’ve read many find success using for TN.  Not sure if you might have some insight but if you do I’d love to hear your thoughts.  Glad to hear the surgery is helping you. Sounds like you’ve had quite a journey with this affliction .  Cheers Javaj
      Report / Delete Reply
    • Posted

      Lyrica did wonders for me as well. When I was first diagnosed I tried Lamotrigine and it didn’t help me at all unfortunately. I’ve tried Tegretol, Lyrica, Baclofen, Gabapentin, Amitriptlyine, and Lamotrigine. The combo of meds that I had the most success with was Tegretol and Lyrica. I was on Tegretol for the entire 6 years I had TN. I’ve taken so many medications I’m not 100% sure that’s all the ones I’ve tried but those are the ones I remember. I’m very glad the Lamotrigine seems to be working for you though! That’s awesome. Honestly it depends on the person. You just have to find what works best for you. It took me years to learn the perfect combo. Have you had any recent trauma to that side of your face? Sometimes that can trigger something. 
      Report / Delete Reply
    • Posted

      Hi again.  My question wasn't very clear I think.  This is my first attack of TN, it is just awful.  I have been taking Lamotrigine for 2 year for another issue (mood disorder).  I wondering how I could have such a bad attack while already taking 200mg a day of Lamotrigine.  Anyhow,  Doc put me on Lyrica last week and it is starting to kick in now and I'm feeling some relief.  Just curious about your ideas on the matter.  I did have a front tooth crown replaced little over a month ago.  There was some sensitivity after it was done, my dentist did an adjustment and it settled down.  No problems in that tooth since.  

      Report / Delete Reply
    • Posted

      That would be a good question to ask your neurologist because I honestly don’t know. I do see why you’re curious about that though. How is your pain today? Is it still more achy or stabbing feeling? I always described mine as if I could imagine a really hot knife stabbing me in my face this is what it would feel like. I had a crown about a month ago as well. I don’t think that would have triggered anything but again I’m not sure. My pain was completely out of nowhere when it started. I was 18 years old when my pain started and TN at that age is unheard of. I was the youngest patient my neurologist had ever treated for TN. I actually ended up diagnosing myself lol. Also, 200 mg isn’t that huge of a dose. Maybe it had been keeping this disorder at bay but now your body is used to that pariticular medication. Every time that would happen the doctor would have to play around with my dosage. This disease is so awful because a lot of people don’t know a ton about it because it isn’t very common. It’s extremely frustrating for those of us that suffer/have suffered with this pain.
      Report / Delete Reply
    • Posted

      I have so many questions to ask when I do get into a neurologist.  My pain today is really not bad.  A few twinges in my jaw, teeth area.  Your description of a hot knife stabbing me in the face is exactly what I used to describe it to the ER Doc last week.  I think the Lyrica is doing its job, perhaps in combo with the Lamotrigine it is working more quickly????  Even doctors & the drug makers don't know how these medications really work.  I'm not sure this was totally out of the blue now.  Certainly the full face, teeth jaw stabbing knife pain is new.  Over the last couple of years every so often I would have a day or two of stabbing ice pick pain in my ear, really deep inside.  Once I had to call in sick to work cause the pains would come so often.  They were very quick, just a few seconds then gone, just many times a day.  I always put it down to my earplugs, I figured my eardrums were bothered from too much suction from the earplugs.  The pain would make me hit the roof though.  Related, who knows????  I know what you mean about people not understanding....I had a friend at work who thought maybe my earring was pinching me a night when I sleep and another suggest it could be a new face cream I've been using.  All well meaning suggestions but not helpful.  I can't imagine you being faced with this at such a young age, it must be very scary.  I pray that your surgery keeps you well for ever!!!!  Did you have the stabbing pain with no pain in between?  I seemed to be having the stabbing pain that would just radiate through the side of my head but them just leave me with throbbing achy pain in between.  Difficult to open my mouth to eat or talk.  Today was the first day I was able to eat normally.  I really appreciate getting you taking the time to answer my questions & let me know about your story.  It is so helpful to connect with people who understand this.  

      Report / Delete Reply
    • Posted

      My pain started after I had some dental work done. I asked the Dr. & he said "There is no proof that it caused it . But most people that have this have had some kind of trauma to the mouth or teeth."

      Report / Delete Reply
    • Posted

      It's more common then you think. 

      For relief this is what I do

      There are a few things you can use to have less side effects. 

      1. 800mg of Turmeric in the am. For some reason it doesn't work that well at night.

      2.  B 12 & a B complex. This needs to be taken in the am. (B vitamins keep you awake)

      At night I take 1/2 a Carbamazapine. 

      I hate the side effects of the meds. 

      Both the Turmeric & b vitamins are natural & don't have side effects.

      Report / Delete Reply
    • Posted

      I agree that it’s more common than we realize but there is still less than 200,000 cases a year. And for my age it was extremely rare for me to have this because I was a teenager when I was diagnosed which is why they never even considered TN. I’m the one who asked about it. Normally it affects women over 50 and I was 18! I never had trauma to my face and I was never in a bad wreck or anything. Mine literally came out of the blue. 2 blood vessels were wedges on on my Trigeminal nerve causing the stabs of pain through my face. The neurosurgeon said I had one of the worst cases he’s ever seen and my surgery ended up taking 2 hours longer than he anticipated. I’ve heard good things about B complex for this disease. I was so desperate and so over taking medications that only half worked I opted for the MVD surgery. Best decision I ever made. Thanks for your reply!
      Report / Delete Reply
    • Posted

      Whenever you think of a question write it down! That’s exactly what I did. I’m so glad your pain seems to be easing. It sounds like the Lyrica is definitely helping. The medications used for TN are wonderful when they actually work correctly. I’ve heard of people describing this kind of pain in their ears before. Maybe it’s started there with you and now it’s moved to your face/jaw? I had some pain in my ear after my surgery but that went away and hasn’t come back. I always felt bad because my family would try their best at being supportive but they didn’t understand what I was going through. Which is why I came to this site. This support page has gotten me through some of the darkest times in my life. It’s something about connecting with people that know exactly what you’re going through.  I would go several months with no pain and I would slowly get twinges so I knew that’s when it was coming back. Within a week of those twinges it would be full blown for the next few months. I think the longest I ever went with no pain while on medication was about 6 months. Then it started coming more frequently and the attacks were more severe. If i just laid there I normally wouldn’t have pain but if I moved my mouth or wind touched my face, etc it sent immediate shocks throughout my face. Normally mine was always triggered my something. When I was first diagnosed though it was very sporadic and it would wake me up in the middle of the night. That stopped once I was on a high dose of Tegretol.  I truly hope you get to the root of your problem and find some relief. I’ll answer any questions I possibly can!
      Report / Delete Reply
    • Posted

      Hi again.  I’m guessing the low dose 50mg x 2 isn’t doing it anymore.  I started feeling a bit stronger pain last night.  Dull in comparison to last week but keeping me awake.  I’ve been doing a lot the last couple of days, catching up from the fog I was in last week.  I’m going to up my dose to 75mg x 2 and see if that settles things down.  My GP suggested I go up slowly until I maintain relief.  I imagine this is normal.  Body adjusted to the meds and now I need more for effectiveness.  Good news is I have a neurologist appt in May.  A ways away but I’m in Canada and referrals can take up to a year or more for specialists.  I think doctors do their best to triage patients, so 2 months is good.  I was going to pay out of pocket and go private if it was a really long wait so this is good.  Mean time my GP is very good about most things so I trust her with meds for pain.  Hope you’re having a good week.  I’ll check in and let you know how my facial pain specialist goes next.  This guy is an oral surgeon and specializes in nerve pain.  Got in quick cause my dentist referred me and extended health covers it cause it’s dental and not government medical system.  Canada has its flaws with medical system for sure.   Thanks for listening!!!!  Not much to do at 4:00 am.
      Report / Delete Reply
    • Posted

      Just curious what you're taking for pain. Just try the 800 mg of Turmeric in the am. Like I said it's a spice, not adictive & actually good for you. Didn't work at night for me. 

      I had to stay away from sugar & anything with acid, ketchup, tomato's.  Have a blessed & pain free day!

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up