Feeling frustrated and alone

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Short story compared to those of you who have had TN for 5,10,20+ years and my apologies for repetition. I'm sure I already posted this info when I first found the site:

Intermittent, but intense ear pain that feels like knives being shoved in and out of my left ear for the past year.

January of this year-extraction of lower left molar, due to massive infection beneath the tooth, found only when my dentist requested a special kind of 3D ex-ray. April same thing happened with upper molar; another extraction required.

After the first extraction, I experienced unbearable pain (Level 8-10) in left lower jaw, ear, neck, head....for four months.

Went on FMLA, then retired. There was no way I could go to work. Could not function.

As you can all understand, I was frantic to find an answer and a way out of pain.

Between my wonderful dentist, an oral surgeon that my dentist referred me to for consultation, and my GP, I had multiple blood tests, CT scans and MRIs. The oral surgeon diagnosed me with Atypical Facial Pain, prescribed gabapentin, and said I would have this for the rest of my life and I need to learn to manage the pain.

I also began to see an acupuncturist (grasping at straws, I know) and I've been faithfully following her suggestion of a Traditional Chinese Medicine diet and seeing her weekly for treatments. I do believe that this has helped my immune system, but does not seem to help the pain.

Also started seeing a psychotherapist because I felt/feel hopeless. He helped (and is still helping) me to switch my mindset from helplessness to determination.

I found this site. What a Godsend.Thank you all for sharing your personal stories. It helps to read about others who share my experiences. I read all the articles and the recommended book. I read abstracts and research articles on TN in PubMed.

I brought copies of articles and chapters from Striking Back to my dentist, oral surgeon, and GP. At my request they have prescribed a combination of gabapentin and amitriptyline that keeps my pain level down to 1-3 most of the time, but the doses are still low enough that I can actually walk upright.

So, why am I having such a pity party today? I did not go to yoga today because I'm hurting. I struggle against increasing my meds even though that helps. I really hate this 'condition' that is a constant negative presence in my body and in my life. I hate hate hate that it keeps me from doing the things I love. I'm really frustrated that the only neurosurgeon in the area who actually knows about TN is so popular that the soonest appointment I could get with her is February 2016.

I wish you had a 'buddy system' here where maybe I could be paired up with someone with whom I could check in weekly.

In my mind I count all my blessings every day and I'm thankful for my family, friends, and overall health, but this Trigeminal Neuralgia is kicking my butt.

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Hi Rissmal,

My story is very similar to yours. My pain started with an infected wisdom tooth 2 years ago. I had it extracted but the pain came back worse than before. I’ve had additional dental surgery lately and it only made it worse. It’s being controlled by carbamazepine 600mg per day but I have a hard time coping with the fact that I have to be on chronic medication for what should have been a simple dental issue. My doctors and dentists initially told me that this sort of thing should only last a few months. I feel cheated and like a failure, and my mother has told me that it’s shameful to be on pain medication for so long (this was a heat of the moment thing…she’s usually supportive).

But usually I do OK. Carbamazepine works really well and I was fortunate to get relief from the pain early on so I could keep my job (I’m in my mid 20s so retirement is not an option yet!) I’d be happy to be your buddy if you need one.

The neurosurgeon I was referred to has a 3 year waitlist. I’m ambivalent about surgery at any rate…especially for atypical pain.

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Toothache said:

Hi Rissmal,
My story is very similar to yours. My pain started with an infected wisdom tooth 2 years ago. I had it extracted but the pain came back worse than before. I've had additional dental surgery lately and it only made it worse. It's being controlled by carbamazepine 600mg per day but I have a hard time coping with the fact that I have to be on chronic medication for what should have been a simple dental issue. My doctors and dentists initially told me that this sort of thing should only last a few months. I feel cheated and like a failure, and my mother has told me that it's shameful to be on pain medication for so long (this was a heat of the moment thing...she's usually supportive).
But usually I do OK. Carbamazepine works really well and I was fortunate to get relief from the pain early on so I could keep my job (I'm in my mid 20s so retirement is not an option yet!) I'd be happy to be your buddy if you need one.

The neurosurgeon I was referred to has a 3 year waitlist. I'm ambivalent about surgery at any rate...especially for atypical pain.
Hi Toothache,
thanks for your response....and I definitely need a buddy. I am not interested at all in surgery unless a knowledgeable, experienced surgeon guarantees that it will work. So, I'm not going to the Neurosurgeon for surgery; just looking for answers......
Rissmal
4

When it comes to surgery, there are no guarantees. A neurosurgeon will generally look at the case from a neurosurgical perspective. That’s what they make their living doing. If you want a MD to review your medications, a neurologist would be the one to see. But, it sounds like your GP and dental professionals are doing a good job of that already.

It is frustrating. I want answers too, but as one doctor told me, there are no definitive answers behind what I have. Trigeminal neuralgia is the closest medical condition, so that is how they are basing my treatment, but I don’t fit the formal diagnostic criteria for that either. Right now my formal diagnosis is post surgical neuropathic pain of V3. I had one neurologist diagnose it as atypical facial pain, but I dislike that label because it really only says that they have no idea what is going on.




rissmal said:



Toothache said:

Hi Rissmal,
My story is very similar to yours. My pain started with an infected wisdom tooth 2 years ago. I had it extracted but the pain came back worse than before. I’ve had additional dental surgery lately and it only made it worse. It’s being controlled by carbamazepine 600mg per day but I have a hard time coping with the fact that I have to be on chronic medication for what should have been a simple dental issue. My doctors and dentists initially told me that this sort of thing should only last a few months. I feel cheated and like a failure, and my mother has told me that it’s shameful to be on pain medication for so long (this was a heat of the moment thing…she’s usually supportive).
But usually I do OK. Carbamazepine works really well and I was fortunate to get relief from the pain early on so I could keep my job (I’m in my mid 20s so retirement is not an option yet!) I’d be happy to be your buddy if you need one.

The neurosurgeon I was referred to has a 3 year waitlist. I’m ambivalent about surgery at any rate…especially for atypical pain.

Hi Toothache,
thanks for your response....and I definitely need a buddy. I am not interested at all in surgery unless a knowledgeable, experienced surgeon guarantees that it will work. So, I'm not going to the Neurosurgeon for surgery; just looking for answers......
Rissmal
5

Just recently diagnosed, but by a Head and Neck doctor, as my dentist thought the pain was sinus oriented. Awaiting an appointment with a neurologist. Neither my dentist or the oral surgeon who did the extraction even mentioned this as a possibility in the many follow ups after the extraction or prior to the extraction procedure. It was referred to by this latest Dr as Atypical Face Pain. I have already learned so much from the site and will continue to learn, am sure. It is so nice to know I am not alone.

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Thanks, WNC, for your reply. Nope, you are not alone, but it surely feels that way when speaking with experts in the medical field.

I wish you the best in your search for relief; I agree with others (including some of the literature) that Atypical Facial Pain is no longer an acceptable diagnosis since it is really meaningless. The book, 'Striking Back' is a must purchase. I've written this so often I might be accused of having a vested interest in the publication....I don't. It's just full of a wealth of knowledge.

Best to you,

Rissmal

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I guess you can add me to the tooth ache club. But the strange thing with me is that for years I never had any problems with root canals, cleanings, flap surgery, crowns, and even the tooth next to this was extracted. No problems till now. This is very weird. The tooth was cracked to the root! Why would I think This would cause such misery?The neuro says it’s not a neuro problem but the oral surgeon says it is. Either way I too was told I might have to be on meds forever. If so I just hope they can find something that works and does not make me I’ll so I can at least be functional. I would be happy to be anyone’s buddy. Just email me anytime

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Hello Susan,

I think the oral surgeon is correct and you might need to either educate your neurologist or find a neurologist who knows something about TN.

These doctors today seem to lack training in delivering a diagnosis with kindness and empathy. I was told the same thing, "You will have this for the rest of your life." Yuck, just yuck. Hopefully I'm going to live for a good while longer and the thought of having pain 'forever' is not comforting.

I have, with the help of my dentist and my oral surgeon found a combo of meds that work for me to keep the pain at lower levels.

Hope you find some answers soon,

Your new buddy, Rissmal