It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Trigeminal Neuralgia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-03-2009, 02:53 AM   #16
Junior Member
(female)
 
Join Date: Jan 2009
Location: Jacksonville, Fl, US
Posts: 28
LuMcInturff HB User
Re: Trigeminal neuralgia

Quote:
Originally Posted by dream77 View Post
Hi,
I went to the neurologist y'day for severe left ear and left eye pain and he said it was mostly trigeminal neuralgia. Also my vision in the left eye got blurry. I've been going to neurologists for the past year for multitude of issues .. I had an MRI as recently as a month ago looking for MS. That was negative. He wants me to go to an eye doc and has prescribed somthing like Tegretol (I don't remember the name) What is the prognosis of this neuralgia ?How long will I need to be on medication? The blurriness and pain is better today ?What do drugs like tegretol do ? He said these problems generally resolve on their own in a while or in an extreme case might require surgery. ANy experiences ??
Your MRI should confirm to your neurologist whether you have trigeminal neuralgia. Where your skull sits on your spine, draw a line straight across to your chin and then back around to your atlas or where your skull sits on the spine again. The Trigeminal nerve handles that area, right or left. Sometimes if people have been in wrecks or accidents, then the trigeminal can be damaged, sometimes the normal compression of their bodies over time cause the problem and other times.... think of an electrical wire - you know - it is covered with that rubber protective coating. The myolineal sheath is just like that protective coating, except.... its falling off or wearing away for some undefined reason.

You WANT to make certain that your neurologist KNOWS and UNDERSTANDS about these neuralgia's. Otherwise, you will have a Dr that looks at you like you are faking it or gives you the "you don't look sick" look. * removed * If your Doctor "balks" at you doing your own research, back away.

For me, my ear started it all and then it moved also to the top of my head, my upper lip went to sleep or has held that sleeping feeling. All prior to mine being diagnosed. The shocks of electric caused my head to whip at such speeds it caused another swelling in the atlas area (that part of the skull that touches the spine) and gave me whip lash. The electric shot through my mouth and killed all the roots to my teeth over night. Meanwhile, like you, my ear hurt the entire time and the pressure on my left eye caused double vision.

The nerves are actually "seizing" or having seizures. The tegretol is used for seizures and seems to help in a great way for mine. I am taking the full 1200 mg a day - divided up through out the day. I also have a pain medication that I use for when I have a really bad day. At the http://www. * removed * you will find that once you have this, it may subside but then will come back again in 3-6-9 months much harder than before. To help stop that pain from being too harsh, you remain on the tegritol or maybe the carbamazepine which is the generic.

My Doctor referred to Trigeminal Neuralgia as a disease of Pain and not a disease of decay like heart diseases, cancer, etc.

Some people have those lapses where there is no pain at all. I have not realized that at all. I pray that you do.

Plentiful prayers & bountiful blessings,

WandaLou

Last edited by hb-mod; 05-03-2009 at 04:44 AM. Reason: Please don't post links and instructions regarding commercial websites as per Posting Policy. Thanks.

 
Sponsors Lightbulb
   
Old 05-03-2009, 03:07 AM   #17
Junior Member
(female)
 
Join Date: Jan 2009
Location: Jacksonville, Fl, US
Posts: 28
LuMcInturff HB User
Re: Trigeminal neuralgia

Quote:
Originally Posted by byoung6 View Post
I had my first attack when I was 21, ....I have other pain conditions but this is the one that really defeats me. And now I don't have a day I'm not in pain, I am so sorry for anyone who has to go through this. Winter is really bad, cold wind sets me off really bad. Good luck folks.
Well lady, I am keeping you in my prayers. * removed * The important thing to know is that you are not alone in this. At Walmarts, in the hair care area for African American's are nylon caps of a variety of sizes you can put over your head to stop your new found "allergy to the wind" whether it is someone's fan, air conditioning, a gentle breeze, or winter itself. Then you can get from the Walmart fabric department a piece of fabric to wear across your face shielding you from the wind, fan's, air-conditioner, etc. Like I said, makes you appear like a terrorist when in fact you are protecting yourself.

The trigger point on me is from my left eye thickness of my skull and then up... so even if I put a cap on, that side which goes down to my face is a trigger.

For those who are new reading this, Trigger's are those things which set your trigeminal nerves to seizure causing you the pain.


Plentiful prayers and bountiful blessings to you,

WandaLou

Last edited by hb-mod; 05-03-2009 at 04:42 AM. Reason: Please don't post links and instructions regarding commercial websites as per Posting Policy. Thanks.

 
Old 05-03-2009, 05:06 AM   #18
Newbie
(female)
 
Join Date: May 2009
Location: Parish, NY USA
Posts: 1
Krissi KK HB User
Unhappy Re: Trigeminal neuralgia

Hi, I have had Trigeminal Neuralgia for several years now, it started in my later 20ís and we never really figured out what it was until 2006 or 2007 when I was finally diagnosed. I kept going to my dentist as mine is in my left side jaw. Or at least that is where it started.
Since about 3/13 or so, I have been under attack. I was unable to eat, drink, speak or anything that required jaw or tongue movement for about 2 Ĺ weeks. It has gotten a little better in that I donít have quite as much pain, but it is still pretty bad. I have a 3 year old who just does not understand why mommy canít talk, I have to talk to him and ohhh does it hurt. It hurts so much.

I had read too that usually people donít get this until they are in their 50ís. Iíll tell you something, I wish I were 80 so that I would have only a few more years to deal with it.
From everything that I have read up on concerning the surgeries, none of them are too great. And it never really goes away. I am just at my wits end almost and I decided to try to look into message boards for a little relief.

I was started on Tegretol 200mg, 1 pill 3 times per day then within a few months added in Baclofen. As the condition has gotten worse, we have worked in Neurontin.
I am taking 25 pills a day, Tegretol 3 200mg bill 3x per day, Baclofen 20mg, 1 pill 3x per (plus more as needed) then Neurontin 3 pills 3 times per day. I had been very lucky and didnít really feel too much of an affect on my mental agility while taking the meds, I know that my concentration level is weakened and that I seem to lose the words that I am looking for, but other than that, I was very with it. Well, until last week. I started to see everything really wavy and moving all over the place. Apparently I was getting too toxic, meaning that I had all the drugs in my system that it could deal with.

Now we have decreased the Tegs to 2 200mg pill 4x per day the baclofen is the same and the neurontin was increased to 4 pills x per day.

I am only 32 and have to go buy a 4 pill per day medication sorter. My parents donít even use those.

 
Old 05-04-2009, 03:08 AM   #19
Junior Member
(female)
 
Join Date: Jan 2009
Location: Jacksonville, Fl, US
Posts: 28
LuMcInturff HB User
Re: Trigeminal neuralgia

Quote:
Originally Posted by Krissi KK View Post
I was unable to eat, drink, speak or anything that required jaw or tongue movement for about 2 Ĺ weeks.
The difference in the 100mg tegratol and the 200 mg tegratol is that you chew the 100 mg and you swollow the 200 mg. When you chew the 100 mg it immediately starts taking control over the tongue and throat issues associated with the glassopharyngeal neuralgia. When mine was done with, the taste buds began to fall out of my tongue and I had to start all over with tasting things. Sugar taste really narley and for those few weeks you can not use your tongue it is as if it is paralyzed on the back quandrant but that little portion being immobilized in that manner affects the rest of the tongue. It is really difficult to chew anything and soup becomes a mainstay. this is when you have to alter your diet, as anytime you now eat anything "spicy" in any form, you can flair this off and feel this again. So my 200mg taken 6 times a day - is now with the 100 mg tablet chewed, because I do not want to have that happen to my tongue again.

 
Old 05-04-2009, 03:11 AM   #20
Junior Member
(female)
 
Join Date: Jan 2009
Location: Jacksonville, Fl, US
Posts: 28
LuMcInturff HB User
Re: Trigeminal neuralgia

* removed *

Last edited by hb-mod; 05-04-2009 at 05:27 AM. Reason: Do not post about editing/bans/deletions/moderator decisions on any other board.

 
Old 05-04-2009, 06:00 AM   #21
Facilitator
(female)
 
Join Date: Apr 2005
Location: Birmingham, AL
Posts: 15,010
Titchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB User
Re: Trigeminal neuralgia

Wanda Lu: Please don't say that the vds does not work. As I posted ealier in this thread, my sister had it 9 years ago and has done wonderfully ever since. At that time, the TN Clinic at Presbyterian Hospital/U of Pittsburgh where she went had over 800 patients and about 500 were not candidates for the surgery due to other conditions, other treatments that they had that made them not a candidate for vds, age, etc. She also volunteers with the TN Association, counseling others who have this awful condition and at various meetings (AMA, etc) that come to her her town (she lives in New Orleans so they get a lot of conventions). There is a surgeon here in Birmingham who studied under Dr. Genera (sp?) who invented the procedure and he has operated on several people I know here who have had the condition. All were successful. I know one person who had the Gamma Knife procedure and it did not work. Just wanted to share my personal experience.

Last edited by Titchou; 05-04-2009 at 06:01 AM.

 
Old 05-05-2009, 07:50 AM   #22
Junior Member
(female)
 
Join Date: Jan 2009
Location: Jacksonville, Fl, US
Posts: 28
LuMcInturff HB User
Re: Trigeminal neuralgia

Quote:
Originally Posted by Titchou View Post
Wanda Lu: Please don't say that the vds does not work. .
Thanks Titchou. I apologize. While I have not done any of those procedures I have read where some 40,000 Trigeminal Neuralgia, Glassophyrengeal Neuralgia, Occipital Neuralgia and other Facial Nerve Pain people have currently stated their experiences and that is what I had discussed with my Doctor. It is good to hear that your Sister had a most excellent experience and that it has lasted her. I believe there are also implants that can be done as well as the various medicinal treatments. My Dr stated that there are apparently several types or depths of these diseases in that some come and then leave, some come and go, and some stay in some form and work its way up the chain.

For myself, I am now finding that sweat is one of the most horrific feelings when produced in the area on the left side for me. The seizures are completely different than those previously felt and my tegretol is not strong enough to stop them. So much for living in Florida and trying to do anything outside. For myself, I have the cold sensitivity on the left side along with the "allergic to the wind" which appears to be very commonplace.

Does your SIster post here?

 
Old 05-05-2009, 08:45 AM   #23
Facilitator
(female)
 
Join Date: Apr 2005
Location: Birmingham, AL
Posts: 15,010
Titchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB User
Re: Trigeminal neuralgia

No, she doesn't post here.

And she said she knew the surgery had worked on the way back to her room from receovery because cold air from an AC vent blew on her and it didn't hurt. She's a natural blond so now I kid her about having a "hole in her head" too!

 
Old 11-20-2009, 04:35 PM   #24
Newbie
(male)
 
Join Date: Nov 2009
Location: Dayton Ohio USA
Posts: 2
brookline HB User
Re: Trigeminal neuralgia

My TN started about 5 years ago with very light and short episodes. I most frequently felt them in the shower when a light mist hit the right side of my face. It was a short -- maybe 5-10 seconds at most pain and very managable. This would occur 2 or 3 times a week for a month or so then would disappear completely. It was no big deal and was more of a "I wonder what that was" type of condition. Then last summer, I had some dental issues (legitimate) and noticed increasing pain and length of attacks from what turned out to be TN. I noticed that if I touched a certain place on my gum with my tounge, the pain would go away or could be prevented after a little while. The dentist sort of brushed this of as being something that tooth decay can cause and did the needed dental work and I had some additional legitimate dental work done. After the dental work was completed, and while I recovering, I started getting renewed pain with origins at the same place, except the point was now more sensitive than ever. Several things the dentist did helped for a few days, then teh pain came back. I followed the dentist's recomendations -- rinsing the mouth with salt water, etc. -- and things kept getting worse. When I went in for some follow-up work, the dentist could not control the pain even after injecting 7 shots of novacaine, and he had to stop preiodically whenever I had an attack. Finally, he said he wondered if it was caused by TN. That as the extent of his interest in TN, but I got him to refer me to a neurologist who confirmed the diagnosis. I started on 200 mg Tegerol per day and I thought I had found a miracle drug. I was event free for almost 2 days. When pain returned, the neurologist upped my Tegerol to 400, with similar results. This went on for 600 and then 800. At this time, the nerologist added Baclofen 20 mg per day. This worked for a week or so, then the pains came back. The Baclofen was then upped to 40 and finally 60 mg per day. I also was put on taking my meds 4 times a day like clockwork, meaning I needed to get up at least once during the night to take meds. I went to the Cleveland Clinic, which re-evaluated my condition, and who upped my Tegerol immediately to 1200 mg of Tegerol, then after 2 weeks increased my dose of Tegerol to 1600 mg. This combination 1600 mg Tegerol and 60 mg Baclofen daily kept me pain free for 6 weeks, but I was clumbsy, dizzy sometimes, and had trouble thinking. I also wanted to sleep a lot of the time. My neurologist cut me back to 1200 mg Tegerol and 45 mg Baclofen daily a couple of weeks ago. Last night I had the first attack in 8 weeks -- not as bad as the ones I had before, and not as painfull, but unexpected and none the less scarry. On the lower dose, I was not as clumsy, never dizzy, and able to work 6 hours or so a day without incident. My liver enzimes have skyrocked and both my family doctor and the nerologist want me to keep on the lower doses -- assuming one of the two medications used was messing up my liver. I know that other medications may be used, and I am looking into surgerys. The trigeminal nerve on the right side is completely wrapped by a major brain blood artery, so microvascular decompression has been suggested, but I am curious if success (both from pain and risk of surgical death) are more or less likely when a major blood artery is involved

Scott

 
Old 11-21-2009, 11:38 AM   #25
Facilitator
(female)
 
Join Date: Apr 2005
Location: Birmingham, AL
Posts: 15,010
Titchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB User
Re: Trigeminal neuralgia

In my sister's case, the arterial loop was pressing on the trigeminal nerve. They moved the loop out of the way, tacked it in place and then separated all the nerves in that group. They wrapped the trigeminal nerve with a teflon like material. All has been well since. I hope you get your situation resolved soon.

 
Old 11-21-2009, 04:33 PM   #26
Newbie
(female)
 
Join Date: Jan 2009
Location: Sugar Land, Texas
Posts: 6
spindrift HB User
Re: Trigeminal neuralgia

I was sad to see the amount of medication you had to take, and my heart goes out to you. I chose a non-medication route and had the Gamma Knife with success for over a year. The pain has returned somewhat, but nothing like before.

I love the results Titchou's sister had. If necessary, I will go that route.

Medication is just not the answer. We have a wonderful life to live, so check on the Gamma Knife (non invasive procedure) or review Titcheou's report with your doctor.

Folks, it is nice to be able to have communication with this very rare condition. I'm fortunate to have friends who understand and have been my supporter (& coverer - if there is such a word) for all these 17 years.

 
Old 11-22-2009, 01:15 PM   #27
Facilitator
(female)
 
Join Date: Apr 2005
Location: Birmingham, AL
Posts: 15,010
Titchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB User
Re: Trigeminal neuralgia

My best wished go out to all of you. I know how awful this condition can be.

 
Old 11-22-2009, 10:50 PM   #28
Junior Member
(female)
 
Join Date: Apr 2009
Location: Florida
Posts: 31
patti678 HB User
Re: Trigeminal neuralgia

hi:
I was assualted in 1988 and have been in pain ever since. They found that my trigemental nerve cluster was injured. I was 29 at the time they told me then that the surgical route would only give me a 50 - 50 chance of surviving. I have been on ever increasing amounts of strong pain meds ever since. I am currently on MS Contin 100 mg and MSIR 30 mg. I am interested in the gamma knife procedure. Is there anybody out there who has had it. Did your pain go away. was the procedure a major operation and what are the side effects.
I am real tired of taking pain meds and they do not take but only a little bit of the pain away.
Patti

 
Old 11-24-2009, 08:24 AM   #29
Newbie
(female)
 
Join Date: Jan 2009
Location: Sugar Land, Texas
Posts: 6
spindrift HB User
Re: Trigeminal neuralgia

Lisa, I have had the Gamma Knife.

I did have great success - zero pain. Some of it has come back, but you can have Gamma Knife twice. Very much worth it.

Last edited by moderator2; 11-24-2009 at 08:59 AM. Reason: posted contact info - please read the posting rules

 
Old 12-28-2009, 08:19 PM   #30
Newbie
(female)
 
Join Date: Dec 2009
Location: TX
Posts: 1
mskat33 HB User
Re: Trigeminal neuralgia

Hi Dream I was diagnoise with TN sometime last year. I have taken so much medication I don't know what to do. Today I sat in the ER for about 4 hours 2-day. What have you done about your TN

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
TMJ and Trigeminal Neuralgia bhauff Trigeminal Neuralgia 4 04-10-2010 12:09 PM
Cracked Tooth, Lost Filling, Abscess or Trigeminal Neuralgia?!? jamsie Trigeminal Neuralgia 22 06-27-2009 12:48 PM
Stoke and Trigeminal Neuralgia - Any connection? Stacia Trigeminal Neuralgia 0 10-05-2008 08:55 PM
Trigeminal Neuralgia Jill43 Trigeminal Neuralgia 30 10-01-2008 10:05 PM
trigeminal neuralgia and TMJ? plkelly Trigeminal Neuralgia 16 09-18-2008 12:16 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



Titchou (6), Isurvivedtn (2), green girl (1), violet6 (1), jverive (1), E11YearsOfPain (1), ladybud (1), sasslass (1), Cindy Marie (1), byoung6 (1)

Site Wide Totals

teteri66 (1177), MSJayhawk (1004), Apollo123 (903), Titchou (847), janewhite1 (823), Gabriel (758), ladybud (753), sammy64 (668), midwest1 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 08:31 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!