Do you ever doubt you have TN? (This is a long one- thanks for your time:))

1

Hi everyone! I have another question today- do you ever doubt you have TN?

I know it sounds crazy to ask, but sometime I doubt myself- am I making this up? Is it really TN? Why does my ear hurt? Am I taking too much codine?

Honestly, I’m sure its partly denial of all of this, and also, I fear that Ill be told- oh its not TN- then I’ll come out looking like a fool and people wont take me seriously.

Now, I know its silly- I have my neurologist and primary saying I have TN and my new neurosurgeon saying I defiantly have classic TN. At the same time, a different neurosurgeon says its most likely TN, but he and my neurologist spoke and also think it may be Atypical face pain. So I feel a bit of a fool.

I have the classic shooting pain from my ear, behind, infront and below my ear, to my gums, across my cheeks, jaw, and sometimes to my eye and temple. Totally left sided. Very very painful, only opiates and such help, tegrotal, triliptal, baclofin, all helped, but I was allergic to the t’s and conked out on the baclofin. So now I’m on 60 mg on Cymbalta and codine as needed (3-6 per day usually). Have a Ciss scan tomorrow and hopefully moving fwd with the MVD at Georgetown. I was diagnosed in July. Went through the whole - is this a tooth problem for a year, before it crashed upon me in July.

I guess I doubt myself sometimes, when I’m having a good day. Or when I’m told you dont seem to be in much pain.

I need to remember the medications dull the pain- and how much worse it would be without the meds. I see videos and people literally fall over from the pain. I become a quiet statue. I see videos or read stories of people screaming with pain- I can not scream - it makes the pain much worse.

Also, I usually dont have trouble with chewing- however, I do chew on my right side only, and avoid hot and cold drinks/ food and hard foods like nuts, and especially avoid gum. So, I guess I do have trouble chewing! But not to the point where I am starving- I have actually gained weight since I’ve been diagnosed, b/c I’m home all day and not exercising.

So, I guess writing this out helped reassure myself, but wanted to hear your stories and advice.

2

I relate totally. I also have been diagnosed multiple times, and also am not in pain every single day. I wonder if I get off my meds, will the pain come back. I second guess myself as you do, not wanting to look like a fool. I am in pain now and am still in a mirror checking all my teeth with a flash light and also made an appointment with a dentist. I also do not chew on that side although it doesn't hurt to chew. I do get the shocks in my temple and my ear aches and all the teeth on my left side hurt. I only get the pain 3x a yr. So my in between time I am thinking its in my head. I read ppls posts on here and I just hurt for them and feel like maybe I don't have it. Then here comes that pain along with a clearance letter from my dentist and a reassurance from my neuro. But I think we are normal for thinking that way. Lol

3

Sara, ((hugs)), I have learned that TN affects us all differently! There are similarities between some of us but in general we really walk “alone” with how we feel our pain and when. Our disease course is different and unique to us individually. This support network allows us to come together and support as well as commiserate with one another which is such a blessing as we can really feel alone with our pain.

TN is not a cookie cutter disease , it’s not uncommon to read and research and consider that you don’t have TN, I think we’ve all been there at one point or another, until…we feel the pain.

I guess the most important thing I want to convey is trust your intuition, you know your body best, do your research and find doctors that are willing to work with you to control your pain to minimize impact on your quality of life.

Denial is something I continue to visit every once in awhile, and I’ve had TN for quite some time…
Good luck! :slight_smile:

4

I too Doubt myself sometimes because i get symptoms i cant even explain, I have atypical trigeminal neuralgia which took me 3 years to be diagnosed. It was a long crazy road and i almost lost my life but i have come to realize that tn or atn can cause some strange symptoms which can making think that there maybe something else going on. i always remind myself that tn effects the nerves and the nerves send out signals which can cause some strange stuff.

I still goto the doctors and ask him what this burning is on my arms,chest,back its the same burning pain on my face, the doctor knows i have Atn but cant tell me what the burning symptoms are. I have other symptoms like its 11pm now but my body thinks its lunch time outside something to do with the sensory branches on the face i dont really know.

I understand that these burning symptoms i get on my arms and chest,back,legs are caused by fibromyalgia. my atn makes me sensitive to sound and light, my fibromyalgia makes me sensitive to cold breezes on my skin. having what they call fibro fog and Atn can really make for some crazy symptoms, i take no medicine for this because i know its the nerves in my body messing about and its not going to kill me.

I do get the electric shock but just remember its the nerves causing this and just try and go about your day, i know its hard to live in pain but it can be done.

5

My 4th bout with TN......has been gone for 3 years.......Inderol is really helping me!!!!!!!!!!!!

6

I often doubt that I have TN. It' hard for me to fathom that something which feels SO much like dental problems could possibly be anything but that. However, I know that our bodies can play tricks on us. I'm so unsure about it that I have scheduled an appointment for a 2nd neurology opinion (which is apparently taboo in the neuro world of Northwest Arkansas). I'm hoping that a 2nd opinion will ease my doubts or reveal something that will provide some relief from the pain. I often fear that another dentist will eventually find something wrong with my teeth and I will look like a fool. However, that would only be because another dentist and endodontist overlooked something. I can't imagine how angry I would be at them for the months of pain and thousands of dollars that I would've needlessly spent searching for the origin of the pain/confirming the TN diagnosis. On the flip side, I would welcome those feelings if they meant that the pain was finally gone! I hope that you too find some comfort and relief, whatever/however that may be. You're definitely not alone in feeling the way that you do. :)

7

I can totally relate. I think this is part of the grieving process. Denial is not just a river.

8

I too feel doubt, even though I have no teeth other then the 4 front on top and bottom, all have been taken out after years (maybe 10) on and off thinking it was decay, after having the last removed in March, I still think maybe its my teeth maybe the dentist left a piece of tooth in my gums, sometime I think I am imagining it that I can't be in this much pain. I think I might look for a therpist to help me wrap my mind around it all.

9

This post is from Jan, 2011??? WOW

10

I doubt more days than not! I questions some nerve damage from having a teeth pulled (when this all started), TMJ some other neuralgia. You are not alone. I have had two normal MRIs, the only proof I have is in my variable symptoms, the fact that pain is worse with decreasing trileptal and that a trigfeminal nerve block I had cause severe pain during the procedure. Best of luck to you.