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   Reply Reply
LinkBack Thread Tools
Old 11-03-2013, 12:34 PM   #1
Newbie
(female)
 
Join Date: Nov 2013
Location: Tennessee
Posts: 1
blankenshipm14 HB User
Dealing with Trigeminal Neuralgia, please help!!

I am 22 years old and was diagnosed with trigeminal neuralgia last September after dealing with the condition for a year before my physician realized what it was. I always have a flare when the seasons change (I'm not sure if it has anything to do with seasonal allergies?) but recently the flares have gotten worse. I know a quite a bit about the disorder, and it really scares me. I haven't been able to find a general practitioner who really takes it seriously. My current physician has several patients who have this condition, but they are all older, and fall within the normal age range for TN.

At the end of the last really bad flare, he gave me a prescription for hydrocodone to take to ease the pain during a flare. This time, they are not working. I'm in the middle of a flare right now and nothing is stopping the pain. I regularly take neurontin (300mg, 3x per day) plus the hydrocodone, benadryl, and melatonin to help me sleep, but the pain is so bad that I can't even sleep. This disorder is affecting my performance in medical school. When I take all of this medicine, I'm pretty much a zombie, and my mind feels fuzzy. I literally can't do anything when I'm taking the pain medicine. During the flares, I'm usually having 15-25 attacks an hour.

Does anyone have any tips to deal with the pain of the attacks without taking so much medicine? I am at the end of my rope.

Last edited by mod85; 08-19-2014 at 07:02 PM.

 
Reply With Quote
Old 11-03-2013, 01:29 PM   #2
Facilitator
(female)
 
Join Date: Apr 2005
Location: Birmingham, AL
Posts: 15,261
Titchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

I strongly suggest that you find a physician in your area approved by the facial pain group. You might consider the decompression surgery. My sister had it at Presby Hospital in Pittsburgh where it was invented and she has recovered wonderfully.

 
Reply With Quote
Sponsors Lightbulb
   
Old 11-12-2013, 01:51 AM   #3
Junior Member
(female)
 
Join Date: Jun 2013
Location: USA
Posts: 13
student4ever HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

I was just given TN as a working diagnosis yesterday. I have been started on Neurontin 200 mg 3x day as tolerated. We'll see how it goes today. My doctor seems to be taking it seriously and I am having a CT with contrast to see if anything is going on that can be fixed.

I am also having trouble sleeping but have found if I sleep almost sitting up, sitting up would be better, the pain isn't as bad for some reason. Percocet at times doesn't touch the pain and I just have to wait the attack out.

I agree that being this young and having TN is scary. My doctor is already thinking about who she would refer me to for surgery. Neurosurgery scares me in and of itself. We'll just see what happens with the CT and take it one step at a time.

Last edited by mod85; 08-19-2014 at 07:04 PM.

 
Reply With Quote
Old 11-23-2013, 05:23 PM   #4
Newbie
(female)
 
Join Date: Nov 2013
Location: Toronto, ontario, Canada
Posts: 8
justagirl37 HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

Hi,
I have Type II TN. There are lots of other drugs that you can try. And TN is different for every one that has it and so are the treatments that work for them.

I take 40mgs of Amitriptyline for my TN. It does cause a bit of fatigue, but it is lessening as I get used to it. Most of the drugs used do cause some terrible side effects unfortunately.

Last edited by Administrator; 11-25-2013 at 08:52 AM.

 
Reply With Quote
Old 11-28-2013, 08:45 AM   #5
Junior Member
(female)
 
Join Date: Apr 2011
Location: FL
Posts: 12
shadowne HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

Several members from one of my TN support groups have said lidocaine patches are the best thing yet to help them. Have you read the book "Striking Back!" by Kenneth Casey, M.D.?

 
Reply With Quote
Old 12-10-2013, 10:20 AM   #6
Newbie
(female)
 
Join Date: Dec 2013
Location: Grand Rapids, MI USA
Posts: 1
JamesWill123 HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

OMG, I feel for you. I had CONSTANT pain from TN for 5 months, being treated with Antiobiotics for a sinus infection, until finally dx. with TN. I had absolutely no relief from pain for 1.5 years, even with oxcodone, etc. Finally had suboccipital nerve decompression. Had a number of side affects from the surgery, and still have 'slight' contact pain, but livable with neurotin 3X per day. I don't know why I waited 1.5 years to have surgery, just afraid of 'brain' surgery. But it was a life saver. I would say check into that as a last resort.

 
Reply With Quote
Old 02-07-2014, 10:48 AM   #7
Newbie
(male)
 
Join Date: Feb 2014
Location: Richmond, Virginia
Posts: 1
Helpishere HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

Quote:
Originally Posted by blankenshipm14 View Post
I am 22 years old and was diagnosed with trigeminal neuralgia last September after dealing with the condition for a year before my physician realized what it was. I always have a flare when the seasons change (I'm not sure if it has anything to do with seasonal allergies?) but recently the flares have gotten worse. I am a medical student, so I know a bit more about the disorder than most people, and it really scares me. I haven't been able to find a general practitioner who really takes it seriously. My current physician has several patients who have this condition, but they are all older, and fall within the normal age range for TN.

At the end of the last really bad flare, he gave me a prescription for hydrocodone to take to ease the pain during a flare. This time, they are not working. I'm in the middle of a flare right now and nothing is stopping the pain. I regularly take neurontin (300mg, 3x per day) plus the hydrocodone, benadryl, and melatonin to help me sleep, but the pain is so bad that I can't even sleep. This disorder is affecting my performance in medical school. When I take all of this medicine, I'm pretty much a zombie, and my mind feels fuzzy. I literally can't do anything when I'm taking the pain medicine. During the flares, I'm usually having 15-25 attacks an hour.

Does anyone have any tips to deal with the pain of the attacks without taking so much medicine? I am at the end of my rope.
Hey ,I just got on this board and saw your message. The problem is simple ,but the AMA and the ADD don't want to recognize it, Simply put they have caused the problem. You dental history ,how many root canals have you gotten any caps & post on your teeth? If the answer is yes ,then the culprit is the bacteria in the dead tooth or under the cap are producing a copious amount of TOXINS that are attacking your nerves ,by way of the blood vessels in you mouth. No way can any antibiotic get to these areas because their avenue of travel has been cut of. When it happen to me By way of my Dentist digging and drilling around a root and pushing Bacteria into it , i found the pain right away and after the Vicaden scrip ended ,i was left hanging with the pain. I asked a simple question " what causes the pain? " Answer: Bacteria producing TOXINS. The only solution was a "root Canal" , ,but i knew there was another solution, I work with a device that uses energy frequencies that are tune to our bodies bacteria , it zaps them , destroys them with a "resonating" Frequency , I was pain free in three days and that was 1 1/2 years ago. This toxin problem also is the cause of "Fibermialgia", and the soultion is the same. the other alternative is to extract the tooth or teeth and let them heal. Good luck !!!

Last edited by mod85; 04-13-2014 at 02:52 AM. Reason: wrong word

 
Reply With Quote
Old 02-08-2014, 05:07 AM   #8
Facilitator
(female)
 
Join Date: Apr 2005
Location: Birmingham, AL
Posts: 15,261
Titchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

I would look for a Facial Pain Assoc approved neurosurgeon. My sister had the decompression surgery at Presbyterian Hospital at the U of Pittsburgh. The Facial Pain clinic there pioneered this procedure. She had great results.

 
Reply With Quote
Old 02-12-2014, 10:38 PM   #9
Newbie
(female)
 
Join Date: Feb 2014
Location: Independence,Missouri United States of America
Posts: 3
Barb921 HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

Quote:
Originally Posted by blankenshipm14 View Post
I am 22 years old and was diagnosed with trigeminal neuralgia last September after dealing with the condition for a year before my physician realized what it was. I always have a flare when the seasons change (I'm not sure if it has anything to do with seasonal allergies?) but recently the flares have gotten worse. I am a medical student, so I know a bit more about the disorder than most people, and it really scares me. I haven't been able to find a general practitioner who really takes it seriously. My current physician has several patients who have this condition, but they are all older, and fall within the normal age range for TN.

At the end of the last really bad flare, he gave me a prescription for hydrocodone to take to ease the pain during a flare. This time, they are not working. I'm in the middle of a flare right now and nothing is stopping the pain. I regularly take neurontin (300mg, 3x per day) plus the hydrocodone, benadryl, and melatonin to help me sleep, but the pain is so bad that I can't even sleep. This disorder is affecting my performance in medical school. When I take all of this medicine, I'm pretty much a zombie, and my mind feels fuzzy. I literally can't do anything when I'm taking the pain medicine. During the flares, I'm usually having 15-25 attacks an hour.

Does anyone have any tips to deal with the pain of the attacks without taking so much medicine? I am at the end of my rope.
I take carbamazepine,which is generic for Tegritol. So far it has controled the pain. I stated out taking 200mg. 3 times daily but had to increase it 600mg.daily.

 
Reply With Quote
Old 04-12-2014, 09:58 AM   #10
Newbie
(female)
 
Join Date: Nov 2013
Location: Toronto, ontario, Canada
Posts: 8
justagirl37 HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

Root canals do not cause Trigeminal Neuralgia. They can cause a lasting infection which can permenantly damage nerves.
TN is caused when a blood vessel or a vein are pressing on or are wrapped around the trigeminal nerve and causes false pain signals to be sent to the brain.
Trigeminal Neurapathy produces the same types of pain and can be caused by dental work. Root canals are thought by many to be an ineffective and dangerous procedure. I agree. The bacteria that can cause infection can damage your jaw bone and the nerves that serve it. People can also end up with neuralgia from many other dental procedures including extractions, forceful procedures and hitting the nerve with freezing.

 
Reply With Quote
Old 05-16-2014, 03:47 PM   #11
Newbie
(female)
 
Join Date: May 2014
Location: Woodland
Posts: 1
L Ray P HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

I hope that by now you have good resolution for your TN. I was diagnosed 7 years ago and went through the same type of experience as you have, with some periods with no pain and others with unrelenting pain. I have been using gabapentin, up to 3600 mg per day. It would generally reduce the intensity of the pain, but never really "controlled" it. I avoided the tegretol and other heavy duty drugs and used baclofen with the gabapentin for a while, but found that the side effects were intolerable. Fortunately my private physician had personal experience with TN, with one of his nurses. He knew what I was going through. The past year and a half the episodes had been constant and even began waking me up at night, which hadn't been the case prior to that. I decided to push for a more permanent solution. I suggested that I wanted to investigate Gamma Knife because I was naturally afraid of brain surgery. My doctor said I should just find a good surgeon and have the MVD surgery. I eventually decided on UCSF as my daughter had had two brain surgeries there and I knew from that experience that they were tops in the field on the west coast. I had my first surgery in January, done by Dr. Edward Chang. They do about 100 MVD procedures there each year, with a very high success rate, so I felt that they had good experience. The surgery itself was really not that bad, and recovery, for me, was pretty easy. Unfortunately, two days after the surgery, the pain was still evident. They told me that the super cerebellar artery was pushing on the nerve and actually bending it away from its normal position. So after another MRI I decided, based on the Dr.'s confidence that he could help me, to have another MVD. This time they did electrical stimulation of the nerve to determine the offending fibers and then did a rhyzotomy to partially damage the nerve, as well as re-pad the nerve with teflon. The result was that I am pain free with the slightest numbness in the lower right chin, lip and inside the right side of my mouth. I still ocaisionally experience a "ghost" of the pain when chewing, but it doesn't hurt so much as cause some anxiety about what might come. I have completely weened myself off the gabapentin and I go back for my post op next week. I'm so far very happy that I decided to have the surgery.

 
Reply With Quote
Old 08-19-2014, 04:10 AM   #12
Newbie
(male)
 
Join Date: Aug 2014
Location: Fresno, Ca
Posts: 4
adam87 HB User
Re: Dealing with Trigeminal Neuralgia, please help!!

Dear blankenshipm14,
I hope that by now you have found a resolve for your TN...
If not, or if you are still on pain meds, Im guessing, being a med student you probably already realize this, but Prescreption meds like lyrica, gabapentin, etc ..only nub your pain, and don't really work toward 'solving' the issue that is causing the pain.
Whether your symptoms have arisen from dental treatments, or due to bacterial toxins, the causative factor is that the sheath around the nerves get damaged...exposing your nerve fibers. This makes them sensitive to the slightest touch or stimuli..
You can keep taking pain-numbing medications...but they arent going t heal your nerve fibres. No prescription pain meds do that. In fact you would only have to keep increasing the dosage or switch to stronger pills as your body gets accustomed to them.
The ideal way to 'fix' the pain, would be to repair your nerve fibres, and there is only one treatment that I know of that helps with that. Niargim (an ayurvedic herbal pill) in combination with resonant homeopathics. Look it up, and see if this is something that is accessible to you, I would highly reccomend it.
Also, Accupuncture works wonders for temporary pain relief.
Good luck..

 
Reply With Quote
Reply Reply

Tags
facial pain, pain, trigeminal neuralgia



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




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 03:09 PM.



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!