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Trigeminal neuralgia

  • by Volcano South
  • Nov 04 2009 03:53 PM
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Posted 04 November 2009 - 03:53 PM

Figured I'd start a thread for this condition.

Does anyone have it? What are your experiences with it?
Replies (29)

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Posted 04 November 2009 - 05:47 PM

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Posted 05 November 2009 - 12:34 AM

I got an MRI today to determine if I have TN.

I began experiencing mouth pain last week, full X-ray was ordered and came back normal. Doctor suspects it may be TN. Luckily, I have a TN surgery center LITERALLY 10 miles away. They have one of the 80%+ success rate machines.

The pain felt like my tooth was compressing itself and the tooth would shatter at any moment. I didn't have any trauma (dental accident, food issue) before the pain began. The pain ripped through vicodin like a hot knife through butter.

I was fucked up on the Vicodin (itchy, etc) but the pain was still at 90-100%. It was sad.

I slept less than 10 hours Friday, Satuday and Sunday nights combined. The ER was no help. My only relief came from 5 shots in the mouth Monday morning from my dentist. I was almost histerical from the pain and lack of sleep.

Since the shots (which wore off 36-40 hours ago) my pain has been much less and the Demerol affored me 10 hours of sleep last night, 8 of which were consecutive.

I am lucky my doctor knew of TN as I understand early diagnosis is key.


I have but one question for you, can I combine MMJ and tegretol?
Did your wife? I called a pharmacy in Colorado and California and both pharmacists told me it should be A-OK.

The side effects from the tegretol (I'm taking EPITOL, but it's the same thing) scare me....to say the least.

Edited by Volcano South, 05 November 2009 - 12:57 AM.


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Posted 05 November 2009 - 08:02 AM

My ex has TN, and MMJ has really helped her out. I believe she only took Tegetrol during a flareup. Her flareups are mostly related to contact in that general area.

Of course, MMJ didn't help her with being a 1st class bee-yotch.

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Posted 05 November 2009 - 04:12 PM


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Posted 05 November 2009 - 08:49 PM

No, I cannot grow my own (lack of owned property)
No, I cannot use marijuana legally (lack of friendly laws)

Thanks for your help though. I haven't seemed to have any issues with tegretol and MMJ..yet.

Who does your wife talk to? Support groups? Online forums? Therapists? I need someone to talk to right now and it's really hard :\

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Posted 10 November 2009 - 09:27 PM

After my MRI results came back good, I was diagnosed with TN.

:\

Here begins my life long battle with nerve pain.

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Posted 21 November 2009 - 05:37 PM


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Posted 21 November 2009 - 06:22 PM

Just adding that I have axonal neuropathy and accupuncture has helped greatly (in the past, when I lived near civilization)

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Posted 21 November 2009 - 10:39 PM

Let me say my heart goes out to anyone who has Trigeminal neuralgia. While growing up in the late 50's 60's, my father had TN. Back then they had a lot less information on the illness than they have today. I remember the drugs prescribed to my Dad and nothing worked for him unless it knocked him out. This went on for years, then someone, I don't recall who, recommended acupuncture. He went to three secessions and it didn't work but he still wanted to try a few more secession because he was getting nowhere with the MD's, especially since he had drastic surgery and had all the nerves in his face cut thinking that that would stop the pain and it didn't. He continued with the acupuncture. After the fourth secession the pain stopped for about two months and then he had another bout with TN. He immediately started a regular scheduled secession with his acupuncture. He never had another painful encounter with TN after that!

Regards,

Edited by Scooterpilot, 21 November 2009 - 10:48 PM.


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Posted 22 November 2009 - 02:05 AM

I'm doing well on the tegretol (epitol/carbamazepam) and occasional demerol.

I have not had an attack in a few days but I still have localized tooth sensitivity on one tooth (cold triggers an attack)

Confused because my doctor is sure I have TN (as my dentist has said "nothing wrong here!") but I am still not convinced.

Confused and scared but....relatively pain free. Plan to stop taking the tegretol when my life calms down a bit.

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Posted 22 November 2009 - 06:39 AM


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Posted 22 November 2009 - 11:39 PM

I'd be wary of the dentist......I've read several accounts of TN happening during/after dental work. When the wife has to go to the dentist, she has borderline panic attacks just fearing a recurrence of her earlier symptoms/pain.

I'm glad that you've gotten some control over your TN Volcano.......when we first spoke, you seemed so overwhelmed..........best of luck to you with your treatment.......

chunk


Thanks again for your words.

TN was, as you've said, initially hard to deal with. I didn't know how I would be able to plan for the future and live day to day with intense pain. Luckily, as I've said, the pain has gone down quite a bit.

I do not plan to have dental work done unless absolutely necessary. Sadly, I still have all 4 wisdom teeth but they do not yet cause a problem. Ask me in 10 years, though.

I hope your wife is able to get the relief she seeks. This is a strange condition to try to describe to regular folks.

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Posted 25 July 2010 - 07:10 AM

Bump5

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Posted 25 July 2010 - 07:42 AM

crazy that i found a thread about this.

my mom actually suffers from this.she cant even chew or anything.it really is sad to see her in so much pain.the once lively woman she once was has turned into a woman who is in bed all the time listening to soothing music.oo and doped up on nerve blockers. we live in texas an wouldnt you know it our state is to ignorant to pass a medical marijauana bill.

can i sue the state over this?

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Posted 25 July 2010 - 08:21 PM

I ran " trigeminal" through my new list and came up with these-

Anandamide Is Able to Inhibit Trigeminal Neurons Using an in Vivo Model of Trigeminovascular-Mediated Nociception (full - 2004)
Anandamide Is Able to Inhibit Trigeminal Neurons Using an in Vivo Model of Trigeminovascular-Mediated Nociception

Cannabinoid (CB1) Receptor Activation Inhibits Trigeminovascular Neurons
(full - 2006)
Cannabinoid (CB1) Receptor Activation Inhibits Trigeminovascular Neurons

Anandamide (an endocannabinoid your body makes) and THC both activate the CB1 receptors. They can do the same "jobs". Nociception just means pain.


Hope that helps-


Granny :wave:

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Posted 04 July 2011 - 02:13 AM

I need to find a strain (or different strains) which can help me with chronic neuropathic pain...?

All advice is welcome...

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Posted 06 July 2011 - 05:13 PM

How did your MVD go??

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Posted 06 July 2011 - 07:25 PM

The MVD operation was OK. It was the best option for me, and has helped me stop taking the Tegretol, Lyrica and Tylenol III pharmaceuticals prescribed by my neurologist. I could not function on the pills. I am still getting breakthrough TN flares when I am overactive and get heated-up, but that's to be expected.

If you're healthy and your Doctors are recommending the MVD surgery, then it's worth thinking about - and do everything you can to get off the pharmaceuticals.

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Posted 07 July 2011 - 05:18 AM

I'm currently on Klonopin (mods: this is NOT "other drug" discussion, PM Rummy for clarification) 1mg/nightly and it helps. I don't take it every night but I can't tolerate Tegretol or Neurontin and I can't afford Lyrica since it's brand.

I'd love to get an MVD but I'm told I can't because my case is atypical. I don't get the flares like you do, I have a constant, dull ache that sometimes turns into pain.

Where is your TN located? Mine's in the V3 branch in ONE TOOTH




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