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Off-Topic => General Topics => Topic started by: BIGSHCLUNK on March 06, 2019, 07:51:45 PM

Title: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on March 06, 2019, 07:51:45 PM
trigeminal neuralgia?  This is something right out of hell....
Title: Re: Long shot.... anybody here aware of ...
Post by: 71vert340 on March 06, 2019, 08:09:29 PM
Yes, I have. The doctors think my daughter-in-law may have it. She was experiencing a severe pain followed by numbness on the one side of her face and upper head. They thought she had severe dental problems somewhere. She had some dental work done but still has the problem. She get's severe pain and numbness still on the one side of her face and head. It's excruciating and makes it hard for her to function. Terrible condition. She's 32 years old.
Terry
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on March 06, 2019, 08:33:15 PM
@71vert340 (https://forum.e-bodies.org/mlist/71vert340_519) - Thanks for your input. Only 1 person I know, knows about this cause their dad had it. By the age of 25 he had every tooth pulled cause they thought it was a dental problem. When that din't work they started randomly cutting nerves in his face. He lived to be 96..... my god I don't know how he did it. Guess I'm just looking for someone to relate to.. I've just been diagnosed with this... I've been cut, burnt, hit..... cakewalk
Title: Re: Long shot.... anybody here aware of ...
Post by: Jay Bee on March 07, 2019, 05:06:18 AM
I've never heard of it but, geez, Chris I'm so sorry to hear you have this. I did a quick wikipedia read and in the first paragraph it said, "It is one of the most painful conditions...". I really hope you get some relief from it somehow.
Title: Re: Long shot.... anybody here aware of ...
Post by: Chryco Psycho on March 07, 2019, 05:09:24 AM
Ugg  :Thud:
Title: Re: Long shot.... anybody here aware of ...
Post by: Brads70 on March 07, 2019, 05:23:59 AM
Quote from: Jay Bee on March 07, 2019, 05:06:18 AM
I've never heard of it but, geez, Chris I'm so sorry to hear you have this. I did a quick wikipedia read and in the first paragraph it said, "It is one of the most painful conditions...". I really hope you get some relief from it somehow.

:iagree: I had to google it also. Sorry your having to endure this, not fun!
Title: Re: Long shot.... anybody here aware of ...
Post by: blown motor on March 07, 2019, 05:42:09 AM
Damn BIGS! Can they control the pain? Let's have a  :grouphug: for BIGS
Title: Re: Long shot.... anybody here aware of ...
Post by: challenger6pak on March 07, 2019, 05:47:26 AM
I am familier with it. My friend has it. He found that eating organic helped reduce flare ups. The pesticide residue on non organic messes with nerves. Sorry to here that you have it. Hopefully you will be able to find a way to minimalize it in your life.
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on March 07, 2019, 06:00:10 AM
I'm seeing the ENT doc tomorrow. My doc wanted to put me on a nerve blocker such as Lyrica/galupentin..... ya allergic to that..... vicodin is NO help... raiding the liquor store, no help. Percocet helps some. In my case imagine this scenario.....  you have a BAD toothache... ok with me?? Now imagine that toothache  in EVERY tooth on one side of your face.  :headbang:  :bricks:
Title: Re: Long shot.... anybody here aware of ...
Post by: js27 on March 07, 2019, 06:11:33 AM
WOW-So sorry to hear of you ailment. Praying that science can come up with something soon so you do not suffer the rest of your life with this. How about some good old weed ? IS it legal in your state ?
JS27
Title: Re: Long shot.... anybody here aware of ...
Post by: Bullitt- on March 07, 2019, 06:15:08 AM
Damn... had to google it myself.... rough goin sounds ta me...
   Best wishes for finding a solution buddy ..
Title: Re: Long shot.... anybody here aware of ...
Post by: Chryco Psycho on March 07, 2019, 06:28:54 AM
Allergic to the one medication that would help Wow
Praying for you
Title: Re: Long shot.... anybody here aware of ...
Post by: superdave on March 07, 2019, 06:43:56 AM
  I don't have that and have never heard of it, I can't imagine what that must be like. I have had my share of injuries and to maybe state the obvious everyone responds differently to medications. Percocet does nothing for me and I finally just started telling everyone I'm allergic to it to avoid the delay n getting relief. Hopefully they can get this figured out for you. Prayers for you Bigs!!
      Dave
Title: Re: Long shot.... anybody here aware of ...
Post by: Topcat on March 07, 2019, 06:57:46 AM
Wow Bigs.

You are always getting something with pain.

Hope you get this tackled and improve.
Title: Re: Long shot.... anybody here aware of ...
Post by: Dakota on March 07, 2019, 08:53:07 AM
Dang Bigs.   Hope you find some relief.   Prayers for you.
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on March 07, 2019, 09:52:18 AM
Thanks for your support guys! seems I always end up w some weird stuff. Then my nephew starts a text bombardment about it could lead to MS.... Which he has... oh goody! He asked me about Baclofen & CBD... which I already have for other aliments . For me no effect. This gettin' old crap SUX. Not lookin' for a pity party thats for sure. But a need to know how others have managed it. @js27 (https://forum.e-bodies.org/mlist/js27_117)  interesting that you ask. No it's not legal here. But my nephew just asked if I wanted a pen. I was like a what? I'd have to fly to Vegas for something like that. He said, o you don't. Hmmmm I guess it's some kind of vaping thing with a little more than CBD. He told me it really helps his MS and call him on the weekend....  :notsure:
Title: Re: Long shot.... anybody here aware of ...
Post by: fantum on March 07, 2019, 10:27:13 AM
When I Googled it, I got this lead to the Mayo Clinic response to the situation.  Says there are several ways of treating the problem, up to and including surgery.

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=12&cad=rja&uact=8&ved=2ahUKEwiguJG30_DgAhUj64MKHb3qBYYQFjALegQICxAB&url=https%3A%2F%2Fwww.mayoclinic.org%2Fdiseases-conditions%2Ftrigeminal-neuralgia%2Fsymptoms-causes%2Fsyc-20353344&usg=AOvVaw3mldniX8iAPp9B-m4p7acC

Good luck, our prayers are with you.



MIKE
fantum
Title: Re: Long shot.... anybody here aware of ...
Post by: challengermaniac on March 07, 2019, 10:30:02 AM
Quote from: challenger6pak on March 07, 2019, 05:47:26 AM
I am familier with it. My friend has it. He found that eating organic helped reduce flare ups. The pesticide residue on non organic messes with nerves. Sorry to here that you have it. Hopefully you will be able to find a way to mineralize it in your life.

Sorry to hear of this painful challenge in your life.  I too hope that you will explore eating organic foods and that they will be of some relief.  All of our best to you and family.
Title: Re: Long shot.... anybody here aware of ...
Post by: challengermaniac on March 07, 2019, 10:37:39 AM
Quote from: BIGSHCLUNK on March 07, 2019, 09:52:18 AM
Thanks for your support guys! seems I always end up w some weird stuff. Then my nephew starts a text bombardment about it could lead to MS.... Which he has... oh goody! He asked me about Baclofen & CBD... which I already have for other aliments . For me no effect. This gettin' old crap SUX. Not lookin' for a pity party thats for sure. But a need to know how others have managed it. @js27 (https://forum.e-bodies.org/mlist/js27_117)  interesting that you ask. No it's not legal here. But my nephew just asked if I wanted a pen. I was like a what? I'd have to fly to Vegas for something like that. He said, o you don't. Hmmmm I guess it's some kind of vaping thing with a little more than CBD. He told me it really helps his MS and call him on the weekend....  :notsure:

I believe the CBD would likely provide some pain management, although I have to go on record for discouraging any kind of Vaping as it just masks one problem for another and pretty much no one else in the household will be able to stand the stench of it!   
Title: Re: Long shot.... anybody here aware of ...
Post by: Dakota on March 07, 2019, 12:10:07 PM
Hey Bigs.  Just mentioned your situation to my wife. Her best friend had the same condition. She had a "gamma knife" procedure to cut the nerve about 10 years ago.  Can't speak to the details of what she's gone through afterwards, but there aren't any outward signs that I notice.   

She's willing to talk with you if you're interested. PM me or give me a call and I'll set it up.
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on March 07, 2019, 01:49:29 PM
Pain related to trigeminal neuralgia is sudden, shock-like and brief.

I just pulled that statement from the MAYO CLINIC.............. WRONG, not in all cases..........  I can feel it coming on from a mile away. Flare ups can last months.... so far mine have been in the 24-36 hour range. Stress appears to me to be a BIG contributing factor. We will see what the doc says tomorrow.
@Dakota (https://forum.e-bodies.org/mlist/dakota_973) thanks for your offer. I will keep you posted on that. 
Title: Re: Long shot.... anybody here aware of ...
Post by: Chryco Psycho on March 07, 2019, 05:08:51 PM
Sent an email  :andyangel:
Stress has a lot to do with most illness
Title: Re: Long shot.... anybody here aware of ...
Post by: jimynick on March 07, 2019, 06:04:22 PM
You're right Chris, getting old DOES suck and I hope you find some relief, somewhere- weed or not and if it works, it works- period. We're pulling for ya buddy! Ian
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on March 07, 2019, 09:42:56 PM
Thanks Ian... these last couple years have just been one weird medical bucket of crap after the next. I'll report in a few days. Between the doc and whatever it is my nephew is talking about. I sure the hell don't want MS that's for sure
Title: Re: Long shot.... anybody here aware of ...
Post by: Chryco Psycho on March 07, 2019, 10:07:21 PM
I pray some of the natural solutions will work , Pharma doesn't look at most of them as they cannot be patented & there is no $$ in selling or prescribing solutions . natural medicines have been around far longer then pharmacueticals too
Title: Re: Long shot.... anybody here aware of ...
Post by: 71-440 on March 08, 2019, 07:10:15 PM
So sorry to hear that. Yes getting old SUCKS! I hope you find an answer to alleviate your pain.


Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on March 09, 2019, 07:51:46 AM
Ok so I'm at the  ENT doc yesterday. He's lookin' in my ears nose mouth.... He says  "hmm I don't see anything, must be neurological" (we need a no poop sherlock emoji)  Really doc, ya think??? CT scan is next..... 
Title: Re: Long shot.... anybody here aware of ...
Post by: Chryco Psycho on March 09, 2019, 06:38:17 PM
Might be nuerological  :Thud: :looney:
Title: Re: Long shot.... anybody here aware of ...
Post by: jordan on March 09, 2019, 09:15:31 PM
Hi Bigs,
     I work at the University Hospital in Madison on the Neuro Surgery team.  We do surgery for this a couple times per month.  I know the procedure intimately.  Most usually it is caused by a blood vessel (artery) the is too close to the trigeminal nerve that comes off of your brain stem.  Each time your heart beats, the artery puts pressure on the nerve and it damages the lining of the nerve causing pain.  What the surgeon does is separates the the artery and nerve with a special piece of medical implant so that the nerve is protected from the artery.  It takes about 4 hours.  Relief is nearly immediate post operation.  My surgeon, who I absolutely love and would let operate on my own family, has excellent results.  I also have a contact in Milwaukee at the Medical College (Froedert) if that is more convenient.  Feel free to contact me if you want details and a referral name.  I am willing to help if I can.
Title: Re: Long shot.... anybody here aware of ...
Post by: blown motor on March 10, 2019, 06:13:44 AM
 :fingerscrossed:
Title: Re: Long shot.... anybody here aware of ...
Post by: torredcuda on March 10, 2019, 06:18:11 AM
Wow, one toothache is bad, can`t imagine worse than that, hope the docs can help.
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on March 10, 2019, 09:50:33 AM
Quote from: jordan on March 09, 2019, 09:15:31 PM
Hi Bigs,
     I work at the University Hospital in Madison on the Neuro Surgery team.  We do surgery for this a couple times per month.  I know the procedure intimately.  Most usually it is caused by a blood vessel (artery) the is too close to the trigeminal nerve that comes off of your brain stem.  Each time your heart beats, the artery puts pressure on the nerve and it damages the lining of the nerve causing pain.  What the surgeon does is separates the the artery and nerve with a special piece of medical implant so that the nerve is protected from the artery.  It takes about 4 hours.  Relief is nearly immediate post operation.  My surgeon, who I absolutely love and would let operate on my own family, has excellent results.  I also have a contact in Milwaukee at the Medical College (Froedert) if that is more convenient.  Feel free to contact me if you want details and a referral name.  I am willing to help if I can.

@jordan (https://forum.e-bodies.org/mlist/jordan_586) Thanks appreciate that ! I waiting to see what the CT brings. Hoping I don't get any flare ups in the meantime. I always seem to get all the off the wall stuff
Title: Re: Long shot.... anybody here aware of ...
Post by: blown motor on April 06, 2019, 04:08:22 PM
Hey @BIGSHCLUNK (https://forum.e-bodies.org/mlist/bigshclunk_53) I just wondered how you're doing. Do you have an update for us?
Title: Re: Long shot.... anybody here aware of ...
Post by: DAYLEY/CHALLENGER on April 06, 2019, 04:57:16 PM
That is one of the conditions that my son had who passed in Dec.   Of course he had several other problems, but that one hurt. You take care.
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on April 06, 2019, 09:10:21 PM
Quote from: blown motor on April 06, 2019, 04:08:22 PM
Hey @BIGSHCLUNK (https://forum.e-bodies.org/mlist/bigshclunk_53) I just wondered how you're doing. Do you have an update for us?

Thanks for asking. Had my CT scan which was a circus in itself. Couldn't get in, didn't know the correct Butt to kiss, back an forth phone calls and other bullshit. meanwhile texting my Doc so he's kept in the loop. SIDEBAR - I've know my doc about 30years, so its first name basis and I do have his cell number. I don't abuse that privilege. The network he is in has a big website so you can contact your doc via email...... providing staff forwards it on  :crying: Not really sure of the setup but on one really BAD day I emailed him around 8PM. I did not expect to hear from him till the next morning (fine). I'm in so much pain the next day I can't think. I wait till about 11:30 (am) and call the office to inquire about the non-reply. As I'm talking to Shirley (maybe Jane or Carrie or ????) she tells me the email was forwarded at 11:40. This tells me she did it while I was on the phone w her.  :verymad:  :verymad:  :verymad: Anyway after that he contacted me in about an hour... He says hmmm odd those guys (ENT Docs are usually pretty quick to get into. He then says maybe try doc so an so. That rang a bell w me.... my mom's doc that found her cancer! Got in the very next day. That being said - everything looks good. Next step neurologist............. May 20th  :Thud: Kept my doc in the loop on that also, he was not happy bout that, suggested even trying out of network. Which I did but got nowhere. So hurry up and wait.... 


That being said the teeth on that side of my face have not felt right since this started. Lucky for me the current pain level has been a daily 2/3. I can most days handle that with an occasional spike to 5/6. Nowhere close to the main flare ups. So time goes on and I get a major gouty arthritis flare up in both feet about 2 weeks ago. Feet still hurt, so things have just been good times. My nephew did get me a pen. It does help take the edge off. But its gotta be a late nite thing.... Never get thru my day at the shop otherwise. Also having new back pain (L5 gone years ago) but this is more middle back not lower. And my sciatica been acting up The fun never stops pain wise. The other issue with this (in my case anyway) ears constantly ring and ring loud.... and daily. Never had that issue either till the neuralgia started. 

But I keep moving , still doing 45/50 hrs at the shop, training dogs, taking care of my dad (95) and helped the wife paint the dinning room today.















Title: Re: Long shot.... anybody here aware of ...
Post by: Chryco Psycho on April 06, 2019, 10:32:22 PM
Hang in there my friend , Praying for you  :andyangel:
Title: Re: Long shot.... anybody here aware of ...
Post by: Brads70 on April 07, 2019, 12:17:12 AM
Yikes Chris!  :o   Doesn't sound like fun at all ! Crazy the run around with doc's.... :bricks:
Title: Re: Long shot.... anybody here aware of ...
Post by: blown motor on April 07, 2019, 05:35:28 AM
Wow Chris, you are one tough SOB to endure all that! Thinking of you.
Title: Re: Long shot.... anybody here aware of ...
Post by: Jay Bee on April 07, 2019, 05:43:00 AM
Geeez Chris, I can't imagine enduring one of your conditions let alone everything you're dealing with. I hope things turn around for you soon.
Title: Re: Long shot.... anybody here aware of ...
Post by: jordan on April 07, 2019, 11:14:48 AM
Thanks for the update.  I hope your docs can get you sorted out.  Hang in there.    J
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on April 07, 2019, 02:36:14 PM
Thanks to all of you for the support.  :thankyou:     
Title: Re: Long shot.... anybody here aware of ...
Post by: dutch on April 09, 2019, 11:25:26 AM
Hey Chris, just stumbled across this thread on my 6 monthly e-body check up....  so sorry to read about yer condition.  Pain sucks, a lotta pain even more.  I hope a solution will be found for your situation.  Best regards, Bart
Title: Re: Long shot.... anybody here aware of ...
Post by: Jay Bee on January 03, 2020, 10:11:57 AM
Okay, not to highjack your "35 YEARS" thread, I'll ask here. Now that that tooth is out is the pain gone?
Title: Re: Long shot.... anybody here aware of ...
Post by: JS29 on January 03, 2020, 10:14:07 AM
Quote from: Jay Bee on January 03, 2020, 10:11:57 AM
Okay, not to highjack your "35 YEARS" thread, I'll ask here. Now that that tooth is out is the pain gone?
I was wondering the same thing!
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on January 03, 2020, 11:12:46 AM
I'm a little "sore" once in awhile, but no major out breaks..... yet! I hope it stays that way. Time will tell the tale... I don't wish that pain on anybody. And thanks for the inquiry  :grouphug:
Title: Re: Long shot.... anybody here aware of ...
Post by: MEK-Dangerous on January 03, 2020, 12:14:10 PM
BIGS,

   My prayers go out to you. I hope this is the end of your pain buddy. 
Title: Re: Long shot.... anybody here aware of ...
Post by: BIGSHCLUNK on January 03, 2020, 03:24:30 PM
 :thankyou: