new disease for me... yay

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billo
Veteran Member


Date Joined Mar 2006
Total Posts : 568
   Posted 5/12/2008 12:51 AM (GMT -6)   
trigeminal neuralgia

the pain is HORRIBLE.... it feels like something drilling my teeth w/o Novocaine... the only relief I got was in the hospital when they gave me the strongest narcotic they had. (the name escapes me) the only good part was I had a hot nurse.

I'm taking antibiotics just because the doctor wanted me take them just in case there was an infection (if it wasnt neuralgia)....i'm hopped up on drugs and they're not working....the pain makes me pray for u.c. again... interestingly enough, my u.c. symptoms are gone and i havent taken my uc meds in a few weeks. if its not 1 thing, its another :(

quincy
Elite Member


Date Joined May 2003
Total Posts : 30993
   Posted 5/12/2008 3:13 AM (GMT -6)   
Wow, how horrific for you!! I guess there's some "relief" knowing what it is...hopefully you'll be able to find out exactly what the cause is.

What doctor diagnosed you...a neurologist?

I've had jaw/face/ear/head pain all at the same time, only occasionaly. Fortunately, the chiropractor helps. I can only imagine the level you're having to deal with....

Hope yo're able to get some relief....would accupuncture help?

What tests did you have to determine diagnosis?

Hang tough...don't wish for UC....it can come soon enough after all this discress. Mind you, narcotics and antibiotics may help keep some symptoms at bay.

Keep us posted.
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 5/12/2008 6:00 AM (GMT -6)   
Omgoodness, I can't even imgagine that kind of pain. I'm sorry you are going thru this. Is this a permenant thing or will it go away in time?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
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tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 5/12/2008 7:41 AM (GMT -6)   
Oh no! Did it just come on all the sudden? You hang in there and keep us posted!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/12/2008 8:09 AM (GMT -6)   
Oh dear! So sorry to hear about that. It sounds horrible :( I hope you find relief soon!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
30mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


billo
Veteran Member


Date Joined Mar 2006
Total Posts : 568
   Posted 5/12/2008 11:11 AM (GMT -6)   
THEY SAY its temporary and NOT lifelong, but just something that popped up...a family friend had the same thing and she told me she was 'relieved' to hear thats what it was for me, BECAUSE its only temporary and so long as i stay on my meds i should be good to go in a week and already i'm noticing some improvement.

so u.c. is permanent and this thing isn't.... but they say all the patients who have this BEG for death and before i went to the e.r. on saturday thats what i was doing... when i read up on this illness, i was amazed to see that every single person who has this begs for death.... interesting stuff

for pain relief i'm on oxycodone
for anti biotics i'm on amoxicillin
for the illness itself i'm on gabapentin... its primarily used for seizures (scary stuff)

Post Edited (billo) : 5/12/2008 10:14:51 AM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30993
   Posted 5/12/2008 2:23 PM (GMT -6)   
scary indeed....keep us posted for sure!

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


billo
Veteran Member


Date Joined Mar 2006
Total Posts : 568
   Posted 5/12/2008 2:51 PM (GMT -6)   
the doctor at the hospital diagnosed me... and i have to see a neuroligist, i was suposed to do that today but she had an emergency come up and canceled :(

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/12/2008 3:35 PM (GMT -6)   
What a coincidence!
I work in a surgery department and someone came in with trigeminal neuralgia and they had a procedure done called a radiofrequency rhyzotomy. I'm not sure what is involved or what it does but it's a quick out patient procedure and maybe it would help. Have any of the doctors mentioned this to you?

Good luck, I hope you get it taken care of. It does not sound even remotely fun :(
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
10mg Lexapro (for depression/social anxiety)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
Not currently taking any colitis meds (between insurance plans and doctors) and mildly flaring. Looking into try all possible natural treatments for the time being.
 
 


billo
Veteran Member


Date Joined Mar 2006
Total Posts : 568
   Posted 5/12/2008 5:17 PM (GMT -6)   
i was supposed to see the neurolgoist today but she canceled on me w/ her own emergency. its getting better already... it seems to be worse at night

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/12/2008 9:33 PM (GMT -6)   
I'm very glad to hear that things are already improving and this is a temporary condition. I can't imagine the pain you've experience.

Please continue to let us know how you are!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
30mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


billo
Veteran Member


Date Joined Mar 2006
Total Posts : 568
   Posted 5/13/2008 12:21 AM (GMT -6)   
wow what a diff. a day makes, yesterday the pains came around 5 pm, it took after midnight for them to come now and even now its not nearly as strong... its still bad.... but getting better. i dont have the greatest teeth and it feels like i have cavities, but sometimes i touch that area there is no pain so i guess thats a sign its just the nerve itself... its scary because i dont know what the pain is from and i dont have a job and no insurance and cant afford to go to specialists and dentists, etc...

snickers0506
Regular Member


Date Joined May 2008
Total Posts : 63
   Posted 5/15/2008 2:57 PM (GMT -6)   
I hope it goes away soon. A lady I worked with had that and she described it just as you did.
40 yrs young
dx UC (pancolitis) Dec 03 then re-dx to Crohns colitis April 04 then re-dx again to UC Dec 07-currently taking no meds and in remission


DocGonzo
Regular Member


Date Joined Dec 2006
Total Posts : 151
   Posted 5/15/2008 3:08 PM (GMT -6)   
billo,

Sorry to hear about your troubles, I can't imagine how painful that must be (although I have an idea)... You may be relieved to know that this condition can be treated surgically with a very good success rate if it comes to that.. In fact, it can be treated non-invasively using a "gamma-knife" device, so even if it persists you won't have to take opiates for pain indefinitely. Btw, if the diagnosis is correct, it has nothing to do with your teeth, so you won't have to go to the dentist to get this sorted out.

Post Edited (DocGonzo) : 5/15/2008 2:11:33 PM (GMT-6)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/15/2008 3:38 PM (GMT -6)   
How are you doing billo?
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/15/2008 9:54 PM (GMT -6)   
So sorry to hear of your problems.  Glad to hear the pain seems to be getting a bit better.  Keep us posted for sure.  Hope it is gone real soon.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema every other PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month

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