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Honored Contributor
Posts: 9,745
Registered: ‎03-09-2010

Trigeminal Neuralgia, the suicide disease...your experience

Share your experience, its origins and what treatments and success you have had.

http://en.wikipedia.org/wiki/Trigeminal_neuralgia

Honored Contributor
Posts: 30,916
Registered: ‎05-10-2010

Re: Trigeminal Neuralgia, the suicide disease...your experience

It's your post. You should go first.
Honored Contributor
Posts: 9,745
Registered: ‎03-09-2010

Re: Trigeminal Neuralgia, the suicide disease...your experience

OK. I have had TN for 5+ years. I had 3 years of relatively good treatment using different and combined antiepileptics in the form of Neurontin, Trileptal, Baclofen and Tegretol. After about 3 years, the efficacy of even the largest tolerable dose, became ineffective.

I went for the surgery (microvascular decompression) placement of pad between the nerve and artery (Microvascular decompression (MVD), an open surgical approach where a small incision is made behind the ear, a small hole is drilled in the skull, and blood vessel, typically an artery, but sometimes a vein compressing the trigeminal nerve, is moved, and placing padding made of Teflon felt for relief of pain).

I then went back on antiepileptics but have not gotten significant relief and have radiation planned for the near future. This may/may not have been the result of a lot of dental work in which VIII of the 5th cranial nerve was exposed to a lot of damage as I have involvement of all three, VI, VII and VIII. It is hypothesized that the problem was already there and the dental work just triggered it.

There are times I am unable to wear mascara, many times I cannot wear makeup, cannot stand air on the cheek or the eye, fear brushing my teeth or gargling. Sneezing and coughing sends me into terrors. There are times when I cannot shampoo the front part of my head near the forehead on the right. I can hardly stand water to touch my face without screaming. It is no wonder that many years ago so many committed suicide from this little known disease. I hope those of us who suffer from it now can and will bring it to the attention of so many that research will be done into affecting a permanent treatment. It seems everything, so far, is only a temporary fix.

Esteemed Contributor
Posts: 5,258
Registered: ‎03-10-2010

Re: Trigeminal Neuralgia, the suicide disease...your experience

namealreadytaken,

Though I cannot possibly know or understand your pain and how this has totally affected your life and who you are, I will add you to my prayers. Do you live in an area where there is a large teaching hospital where clinical trials are common? This can be a source of taking tiny to larger steps forward. Have you contacted the NIH?

I have had the same migraine, left side, since 1984. It's always there and sometimes flares badly. Now I've developed temporal arteritis and cannot stand the light brush of loose finishing powder on my left face nor wind, like you. So far, I'm OK with water.

I've often said that what I want most is for an anesthestiologist to knock me out and keep me out until they can figure out how to stop the pains in my head. I'm getting to the point where I'm getting angry at it and tear up occasionally, which never happened before. Having other health issues doesn't help either, but if my head would just cooperate, life would be infinitely better. Right now, it's hard to find "better."

There is no rhyme or reason to most of this. We can but be as aggressive as we can to seek treatment.

God Bless - Rebecca

Super Contributor
Posts: 639
Registered: ‎01-04-2013

Re: Trigeminal Neuralgia, the suicide disease...your experience

On 2/2/2015 namealreadytaken said:

OK. I have had TN for 5+ years. I had 3 years of relatively good treatment using different and combined antiepileptics in the form of Neurontin, Trileptal, Baclofen and Tegretol. After about 3 years, the efficacy of even the largest tolerable dose, became ineffective.

I went for the surgery (microvascular decompression) placement of pad between the nerve and artery (Microvascular decompression (MVD), an open surgical approach where a small incision is made behind the ear, a small hole is drilled in the skull, and blood vessel, typically an artery, but sometimes a vein compressing the trigeminal nerve, is moved, and placing padding made of Teflon felt for relief of pain).

I then went back on antiepileptics but have not gotten significant relief and have radiation planned for the near future. This may/may not have been the result of a lot of dental work in which VIII of the 5th cranial nerve was exposed to a lot of damage as I have involvement of all three, VI, VII and VIII. It is hypothesized that the problem was already there and the dental work just triggered it.

There are times I am unable to wear mascara, many times I cannot wear makeup, cannot stand air on the cheek or the eye, fear brushing my teeth or gargling. Sneezing and coughing sends me into terrors. There are times when I cannot shampoo the front part of my head near the forehead on the right. I can hardly stand water to touch my face without screaming. It is no wonder that many years ago so many committed suicide from this little known disease. I hope those of us who suffer from it now can and will bring it to the attention of so many that research will be done into affecting a permanent treatment. It seems everything, so far, is only a temporary fix.

Thank you for educating us on this very serious condition. I cannot imagine what you are experiencing--it makes my cervical bulging discs and TMJ seem much more manageable. I appreciate you helping with my perspective and reminder for gratitude. Please take care of yourself and many blessings out to you.
Frequent Contributor
Posts: 110
Registered: ‎02-04-2014

Re: Trigeminal Neuralgia, the suicide disease...your experience

My husband suffered from TN for years, his MS was the trigger. When he was having that pain was the only time I heard him say he wanted to die. Like the OP, he was on all different types of anti seizure drugs. Nothing really stopped that pain. It is fairly common in MS patients. The doctors said one time that surgery to cut the nerve would help, but that the nerve could grow back. Namesalreadytaken, I pray you find relief from this terrible disease.

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Posts: 9,745
Registered: ‎03-09-2010

Re: Trigeminal Neuralgia, the suicide disease...your experience

On 2/2/2015 Jhincher said:

My husband suffered from TN for years, his MS was the trigger. When he was having that pain was the only time I heard him say he wanted to die. Like the OP, he was on all different types of anti seizure drugs. Nothing really stopped that pain. It is fairly common in MS patients. The doctors said one time that surgery to cut the nerve would help, but that the nerve could grow back. Namesalreadytaken, I pray you find relief from this terrible disease.

I have MS. I think that is why they felt the disease was already there, but the dental work just triggered it.

Thank you, all of you, for understanding and learning about this. I pray none ever has to have it. Thank you, All, everyone of you and I do believe that nerve pain whether from MS, diabetes, migraines, disks, etc, is the worst pain anyone can imagine.

Trusted Contributor
Posts: 1,470
Registered: ‎01-01-2015

Re: Trigeminal Neuralgia, the suicide disease...your experience

Namealreadytaken, I am so very, very, sorry that you are dealing with this kind of pain. {#emotions_dlg.sad} I wouldn't wish it on my worst enemy.

I had a bout of it, several years ago, from an accident that I was in. I live with constant head, neck, and back pain.

I go to a chiropractor for help, and that is what stopped the trigeminal pain for me, thankfully, but I was in tears while I had it.

I do have bouts of nerve pain from another painful condition, and there is nothing that takes it away completely, so I do understand what that is like.

My heart is with you.

Honored Contributor
Posts: 19,447
Registered: ‎12-07-2012

Re: Trigeminal Neuralgia, the suicide disease...your experience

Sending my prayers that you may all find relief from this. It sounds terrifying, and very painful. I suffered from reflex sympathetic dystrophy for a couple of years, and it was terrible.
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Posts: 1,470
Registered: ‎01-01-2015

Re: Trigeminal Neuralgia, the suicide disease...your experience

Ugh, Tissyannie, I am so sorry to hear this. I understand that RSD is a very painful condition, too. I hope that you are feeling alright now. ((Hugs)). There is nothing like nerve pain.