Author Topic: How are you feeling right now? (Pt 2)  (Read 168942 times)

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Offline 'andersom'

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Re: How are you feeling right now? (Pt 2)
« Reply #9105 on: September 29, 2016, 12:33:27 AM »
Yush! thought it'd be that one. The Trigeminal nerve.

https://en.wikipedia.org/wiki/Trigeminal_nerve

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

https://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia
yep it's 3rd one Atypical TN.
I thought Hyke was just being creative with langauage.

I've been arguing for years that my teeth were decaying or coming up with abscesses, one by one,  following protracted episodes of acute TN in the given tooth; and I was always told that "There is no known link beween TN and tooth decay" grrr. Well, there wouldn't be, would there, if they say that to every patient who tells them there is a link?

I finally found a dentist who believed me, but since i'd gone to this one to get what was left of my teeth extracted, it's a moot point, really. I did loads of research in my efforts to explain it and finally came up with: dead nerve tissue can cause abscesses/decay, if not surgically removed.  So, the TN in the teeth was caused by the dental nerve dying, I guess. Slightly worrying, now I get that pain everywhere else in my face and head.

Yup, creative with language.

I know the thing well enough to know it's name.
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Offline 'andersom'

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Re: How are you feeling right now? (Pt 2)
« Reply #9106 on: September 29, 2016, 01:14:58 AM »
@ Walkie,

For me it is probably related to a mild case of hypermobility too. Jamming the nerve, somewhere in my neck, because of too much tension and lack of tension in the wrong muscles.
But, there is a clear connection with my teeth. I do not really feel toothaches. I feel when things are wrong, but there is no pain. When it comes that far that the roots of a molar are rotting and dead, my TN takes over. And the half of my face will share that agony.
Big stress is also a factor. I store stress in my muscles. Not in all, so I dis-align my body in doing so, risking a blocking of that bloody TN again.

The biggest attacks of TN did coincide with dental problems. The first few cases were probably triggered because of (different) dentists not realising, because of lack of pain, that I needed a root-canal treatment for years.
Physiotherapy helps me unjamming the nerve. I've had more major nerves blocked in my neck, I am prone to that, apparently. Working out with someone keeping an eye on what I am doing makes me less vulnerable to have it come back.

Have not had the massive attacks for quite some time now. Mild attacks will happen. But the cases where I did not have the pain, but the pain had me and I was nothing but pain are from a while back. Thank goodness. It is the worst pain I know.
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Offline Walkie

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Re: How are you feeling right now? (Pt 2)
« Reply #9107 on: September 29, 2016, 02:19:48 AM »
@hyke,

Hmm somewhat different from me then, re, the tooth connection.  I used to go to my Dentist with TN, because, for years and years, I thought it was tothache. This was before the internet, and i had never heard of TN. Upshot is that most of the affected teeth were checked, X-rayed and pronounced healthy. The TN attacked the teeth one by one, The TN attqacks would typically last a few weeks then stop.  Some weeks or months later I would get an abscess under the now completely painless tooth, or else it would start to crumble . My dentist sometimes made strenuous efforts to sqave the crumbling teeth , but these were never effective. The  tooth would continue to rapidly disintegrate, even to the point that some of them didn't need extracting. It was easy to prise out what was left of the root for myself.

To be fair, my dentist did say I was suffering from neuralgia, and that I should see my Doctor about it.  However, i thought that neuralgia was just a fancy word for toothache, didn't I?  Especially given that the affected tooth  would ecventually go bad, seemingly proving my point.  So I would go to my GP and say "I have an agonising toothache..." and my GP would say "Go back to your dentist" . On occasion I managed to get a prescription for painkillers from one or the other. (The over-the-counter stuff wasn't helping much at all).

Eventually , a lady dentist sat me down and explained to me the difference between TN and toothache, so I went back to my GP and said "I have Trigeminal neuralgia" . Wow!  I didn'y know there was such a thing as a magic word, but there is! My GP;'s attitude was entirely different from then on. I was prescribed very low dosage amityptilene which was actually effective, but had the side effect of making me sleepy. I used to be naughty and only take it when I got an attack of TN ( instead of all the time, as I was meant to)  Eventually, the dosage needed to be increased at which point I stopped taking it at all, because side-effects were too drastic.( I always seem to have that issue with psycogenic drugs.  My brain totally over-reacts to them, if affected at all)

By this time, i'd just about lost all my teeth anyway and The pain was now affecting other parts of my face and heaad, but was misdiagnosed as migraine, ear infection etc.
It was a big disappointmnent when the last of my teeth were extracted, because the pain only became more extensive and more frequent , rather than better. I'd been looking forwards to the day when I lost all my teeth, since my mid-twenties, imagining that would be an end to the pain . (Yes , I knew by then that extraction doesn''t usually cure TN, but I remained  hopeful that in my case it would)

Also, to my immense susprise,  I continued to get the continuous dull ache in my jaws which I'd carried on believing was actual toothackhe, because I'd read online that TN constituted bursts of agonising stabbing pains.  Obviously the dull ache must be something else. But no, atypical TN can cause a whole range of different kinds of pain, as my GP explained to me belatedly.  And I do get that whole range, nowadays. Well, if you count those other pains in, I now suffer  TN more than half the time, but when it's mild-ish     like that  , I rarely notice I'm in pain, I'm so used to it now.

To my mind, the abrupt cessation of those agonising pains , followed- after a pain free interval- by rapid loss of a "perfectly healthy tooth" (according to dentist) very much suggests to me that the decay/abscesses were caused by nerve death, not vice versa. I learned to accurately predict which tooth would go next , according to the site of the pain, but I never, ever managed to persusade any dentist to pull any of them them out, not until after they stopped hurting, because no damage was ever apparent until after the pain stopped. 

I got totally sick of dentists and stopped troubling them , in recent years. I  just let the things decay to the point where the next dentist was sure to agree to extract the whole lot.  Not that said extraction  helped the TN (made it worse)  but at least that's an end to enduring needles in my gums. I am teriffied of needles, especially in my mouth, so the whole freaking story has been an ordeal. 

Well, it remains an ordeal ofc, but an ordeal minus needles, and minus spitting chunks of tooth out of my mouth, which is much nicer.

-Walkie :)
« Last Edit: September 29, 2016, 03:55:48 AM by DrunkardsWalk »

Offline Walkie

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Re: How are you feeling right now? (Pt 2)
« Reply #9108 on: September 29, 2016, 02:54:59 AM »
@Hyke PS . Do you know that Atypical TN can be an early symptom of MS? You should maybe get that checked out, if you haven't already.  I had MS ruled out years ago. Not on account of the TN, but on account of involuntary muscle spasms in my legs, and various other odd symptoms, which have continued to worsen.  Actually I;'m by no means sure it was properly investigated , come to think, but I've accumulated  so many bitches with the NHS, I clean forgot about that one.  No use bitching about that, because they might have been  right to rule it out, for all I know. If I make a formal comnplaint (as I'm very much inclined to do) I'll be focussing on provable mistakes. Specifically, I'll be gunning for one partucular bitch of a neurologist who made pronouncemnents about me without even troubling to glance at my MRI scan...much to the hospital's subsequent embarassment. It only just occured to me, she might also be the one who said I don't have MS (eek! I wouldn't take her word for anything)).
« Last Edit: September 29, 2016, 04:05:44 AM by DrunkardsWalk »

Offline 'andersom'

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Re: How are you feeling right now? (Pt 2)
« Reply #9109 on: September 29, 2016, 05:17:36 AM »
@ Walkie,

I was lucky, when I had my first full blown attack of TN. It was the complete works. All pains imaginable happening along the lines of the nerve on the left side of my face. Clearly stopping at the middle of the face. From intense burning sensations to stabbing to abrasion pain. I went to see my GP. He checked only a few things, and within two minutes I was outside, with a referral to a physiotherapist who knew what to do and who knew what TN was. No need to explain a thing. She could explain me. I had to explain to my dentist what TN was though.


The physiotherapist told me that in the past there had been electromasks, 'euro shaped' to put on the face of people suffering from TN, to electronically fry the nerve. Somewhere she had one of those, as an antique gadget.  :lol1:


I'll keep that about MS in mind, in case weird things start to happen. At the moment I cannot be arsed to get that ruled out or investigated. Life is hectic enough without.
I've had weird spasms, stumbling, double vision etc., when some other cranial nerves got jammed after a fall (and concussion). Getting those cranial nerves freed again made a massive difference. So, despite having experienced weird things, I don't think I have to worry about MS at the moment.
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Offline Icequeen

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Re: How are you feeling right now? (Pt 2)
« Reply #9110 on: September 29, 2016, 05:57:51 AM »
My episodes of TMJ are normally related to stress.

Not the same, but really sucks...I feel for both of you.

:hug:

Offline "couldbecousin"

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Re: How are you feeling right now? (Pt 2)
« Reply #9111 on: September 29, 2016, 06:44:07 AM »
  Guardedly optimistic for my future.  :crossed:
"I'm finding a lot of things funny lately, but I don't think they are."
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People forget.
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Offline odeon

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Re: How are you feeling right now? (Pt 2)
« Reply #9112 on: September 29, 2016, 07:30:05 AM »
Tired. :yawn: :yawn: :yawn:
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Offline 'andersom'

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Re: How are you feeling right now? (Pt 2)
« Reply #9113 on: September 29, 2016, 07:38:20 AM »
My episodes of TMJ are normally related to stress.

Not the same, but really sucks...I feel for both of you.

:hug:

It's the same cranial nerve that gets triggered. Not that different. Does come in different gradations, from mild to excruciating too, doesn't it?
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Offline Icequeen

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Re: How are you feeling right now? (Pt 2)
« Reply #9114 on: September 29, 2016, 08:41:12 AM »
My episodes of TMJ are normally related to stress.

Not the same, but really sucks...I feel for both of you.

:hug:

It's the same cranial nerve that gets triggered. Not that different. Does come in different gradations, from mild to excruciating too, doesn't it?

Yep, it does. At worst haven't been able to open my mouth hardly...which is sometimes a good thing.  :LOL:

Offline odeon

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Re: How are you feeling right now? (Pt 2)
« Reply #9115 on: September 29, 2016, 09:44:26 AM »
I have that, too. No fun.
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Offline Walkie

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Re: How are you feeling right now? (Pt 2)
« Reply #9116 on: September 29, 2016, 09:59:07 AM »
@ Walkie,

I was lucky, when I had my first full blown attack of TN. It was the complete works. All pains imaginable happening along the lines of the nerve on the left side of my face. Clearly stopping at the middle of the face. From intense burning sensations to stabbing to abrasion pain. I went to see my GP. He checked only a few things, and within two minutes I was outside, with a referral to a physiotherapist who knew what to do and who knew what TN was. No need to explain a thing. She could explain me. I had to explain to my dentist what TN was though.


The physiotherapist told me that in the past there had been electromasks, 'euro shaped' to put on the face of people suffering from TN, to electronically fry the nerve. Somewhere she had one of those, as an antique gadget.  :lol1:


I'll keep that about MS in mind, in case weird things start to happen. At the moment I cannot be arsed to get that ruled out or investigated. Life is hectic enough without.
I've had weird spasms, stumbling, double vision etc., when some other cranial nerves got jammed after a fall (and concussion). Getting those cranial nerves freed again made a massive difference. So, despite having experienced weird things, I don't think I have to worry about MS at the moment.
 
In any other context ,  calling that lucky would be a totally mad thing to say :lol1:. nonetheless, i'm suitably envious
and nonetheless i'm suitably sympathetic too. Wouldn't wish TN on anyone (  :apondering: except maybe one two particularly nasty politicians) .

I'm somewhat inclined to blame all those delicate flowers who go around  calling  their little bit of  toothache "neuralgia" . How the heck was i supposed to know that neuralgia really meant something quite different? *huff*

:hug:

-Walkie :)

Offline Walkie

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Re: How are you feeling right now? (Pt 2)
« Reply #9117 on: September 29, 2016, 10:02:50 AM »
My episodes of TMJ are normally related to stress.

Not the same, but really sucks...I feel for both of you.

:hug:
feel for you too  :hug:
empathy is an unlimited resource. no need to single out the "most deserving!" and ration it, is there?
Life sure is a bitch to us all :(

-Walkie

Offline Walkie

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Re: How are you feeling right now? (Pt 2)
« Reply #9118 on: September 29, 2016, 10:09:02 AM »
I have that, too. No fun.
TMJ or TN?

I've an idea you mentioned TN in the past , which would be interesting, given that TN is supposed to rare, and I've never yet met another RL sufferer.
Have we stumbled upon another of those things that are much more common in the Aspie population?

Yep, i already ran every Google seach i could think of , long ago. No known link. But what do those freakin' arrogant NT doctors know, huh? Not much, as they repeatedly demonstrate.

:hug:

-Walkie

Offline 'andersom'

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Re: How are you feeling right now? (Pt 2)
« Reply #9119 on: September 29, 2016, 11:12:45 AM »
I have that, too. No fun.
TMJ or TN?

I've an idea you mentioned TN in the past , which would be interesting, given that TN is supposed to rare, and I've never yet met another RL sufferer.
Have we stumbled upon another of those things that are much more common in the Aspie population?

Yep, i already ran every Google seach i could think of , long ago. No known link. But what do those freakin' arrogant NT doctors know, huh? Not much, as they repeatedly demonstrate.

:hug:

-Walkie

Think TMJ is one of the types of TN. There can be lots of reasons why the TN happens.

Knew someone with TN combined with a facial tic. My brother has the same tic, mildly, almost absent now, but not the pain. The other guy had brainsurgery, it did not improve a thing. His face had become completely assymetrical because of the combination of pain and the tic.

Tics are said to happen more in non neurotypical people.
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