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Trigemimal Neuralgia
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Trigemimal Neuralgia

I posted this question a few minutes ago, but have no idea "where" it is!!!  So here I go again.....

I'm a female in my 60's, diagnosed with Trigemianl Neuralgia about a year ago, and would love to hear from other females with the same problem.  Your pain level, medications you take, and anything at all about managing this condition!!  
After my first episode of Trigeminal Neuralgia,   I took Gabapentin 100mg 2x-3x a day for 3 months. The pain gradually got better and  I reduced my pills to 1x a day.  The pains  then went away for 3 months, and I continued with 1 pill each evening.  When I tried to reduce to 1/2 pill each day, I would start having some minor pain.  I didn't want the severe pain to start back again, so I continued to take 100mg each evening.  It seemed to work fine.

Then about 2 weeks ago, I started having episodes of severe pain again, although not as bad as they were a year ago.  I'm taking 2-3 pills now, hoping to tame the pain again.  I do not want to go with a higher dose unless I absolutely have to.  I've read that periods of remission, then back again,  can be part of this nerve condition.  That's why I would love to hear from others, to see what is happening with them.

Please let me hear from you!
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22 Comments Post a Comment
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644083_tn?1282607775
hola  sorry  you have this horrible pain  i,m in something almost similr i mean i already have  and other s 2 diferents surgerys for tn i,m still in pain but they tell me i have tmj  well some doctors say one thing   and others say other thing well to make this long story short i,m still in gabapentin  i take 3 pills a day 800 mm a day i,m still in a horrible pain i,m so confuse my teeth  and my jaw ear my right face is in pain all the time i been taking the gabapentin for 3 years i don,t have the electrick  stabing pain any more but my all face is in pain when i lay down my face make all this ckraking noice and is painfull when i eat i hear this ckaking noice i used the ice pack help a little take a bunch a pills for pain but if is tn nothing help hope this help  sorry i really know what you going tru right know  i almost forget  i,m going to have other surgery but this is for tmj i m hoping i don,t making a bad decision good luck            //// from pain unknown
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1695384_tn?1306455153
Thanks for your information.  Your symptoms make mine seem very insignificant!   Mine were worse in the beginning (it would cause pain to stretch, brush teeth, wash face, put on makeup, talk, laugh,and just about anything), but I guess the medication has helped that a lot.  Heaven knows, it sure changes your life!  

My youngest grand daughter had her kindergarten graduation this week, but as soon as I got out of the car at the school, the wind hit my cheek and started the pain, so I had to go back home and didn't get to see her graduation!  

I hope you will be able to find some relief.  I will be praying for you along with myself.  I do believe prayer helps.
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644083_tn?1282607775
thanks  for you words  you need to go back to you  doctor  ma ybe you need  to have the surgery i haveit  is really scary but is worted   and iknow  what you mean is like ours life.s change i don,t really have life  i go to work  but i,m in constant pain i only have one thing in my mind  pill all my  grand kids don,t really spend time whit me  because i don,t really feel  like playing  i feel so tired all the time and i cray a lot so is really something  i don,t want my grand kids to see  i have  a wonderfull husband  but i feel like after all this yeas he is going to get tired  try to get planty of vitamins i take vitamis like b12 b 6 fish oil  i,m so so sorry you have to miss you grand daughter graduation  and if you go out used a bendana around you face  i know mayve we look silly but and least you dont feel the pain so much  and used ice pack work a little ? god bless you my friend sorry for my writing
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1695384_tn?1306455153
Thanks again for the info.
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Avatar_m_tn
Bless you all with this HORRIBLE condition....I have been going threw it for about two weeks and it has limited me to 1/4 of my life before it.Diagnosed with MS one month ago and also have a mass in my cervicle spine around c-2...everytime I extend or flex my neck my whole torso goes completley numb...very painfull also because it amplifies my rt leg and lower lumbar spine that I fractured three years ago...I was to have l4-5 fused but backed out of it.MS is TERRIBLE at least with me.I have the numbness of both hands,heart palpitations with major electric shock feelings in my heart when at rest.My feet feel like walking on hot coal after too much walking...double vision,verticle movement up and down ,abdomen numbness and the MS "HUG'"...hurts like hell.I shake alot and speach is choppy at times.I have also woke twice wetting myself!!! Yet the worst is the Trigeminal Neuralgia that I have been trying to deal with...have had fx of mandable,leg arm ,wrist and back and pelvis....would take them all over this TM....soooo damn horrible as pain goes.I can understand why they call it the suicide pain.I go out in the brush in my truck nightly just as not for the kids to see me in pain.We live in a pretty remote area in the Keweenaw Peninsula,tip of Michigan on Lake Superior,we do not have major medical access and only one Neurologist! It took me two months to get in to see him even after my wife called his office pleading my multiplying symptoms,I have a spinal tap to find out what the mass is in my cervicle spine...praying it is not cancer...but I do not care at this point,very tired of the daily pain.Do any of you good folks find it hard to deal with your doc...I feel I have nooo say in anything,can tell him how bad the pain is and he will just say"it will pass"????Well,it has not and has only gotten worse.I was given infusion and had to stop after second because of bad reaction...so I am really not on any meds except medicine to calm my nerves,blood pressue,and clonidine for hypertension.I was also given 4mg of oxycodone that does nothing at all!I am so sorry to go on and on like this...I am sure you folks think that I am crazy...it is just so new and I have nobody to talk to who may have some info or advice.I pray for all of you who may be going thew this terrible condition.I also feel better getting this out to folks who may understand my condition.I promise if I write back,it will NOGT drag on like the crazy person you think I am.Thank you ,thank you for lendind your time,and please feel better.Oh could someone please tell me what kind of pain medicine will help with the TM...THANK YOU and bless you....Kosk
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1695384_tn?1306455153
Don't worry about rambling on--sounds like you have a lot to deal with!  Sometimes it sure helps a lot to just being able to talk with someone who understands the pain .  That's why I posted here, too.  I only have the Trigeminal Neuralgia problem to deal with, and I'm thankful for that!  Hearing from others who have more to deal with than that, helps me to be able to downplay my own problems.

I'm taking 100mg of Gabapentin 2 x a day, morning and evening.  It helps the pain a lot, by decreasing the intensity, but I still have jolts of pain when certain areas on the face are touched--cheek, eye brow, nose!!, --and the "most" sensitive area  seems to change each day.  I also use a topical cream-Neuragen- that helps dull the pain, too. I get this from the drug store.  I also take supplements that are supposed to help heal the the trigeminal nerve--Lipoic Acid, Methyl-B (order online--and better absorbed by the body than what is in the kind you get in a regular suplement), B-complex, C, D.

My doctor is very good, but doesn't seem overly concerned with my condition, just describes the medication.  But from what I have read about TN, there is not a whole lot that can be done except for pain control and surgery.  I will save surgery as the last resort, since it doesn't always seem to hep either!!

I appreciated hearing from you and I will add you to my prayer list, too!!  With God, ALL THINGS ARE POSSIBLE!!!
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Avatar_m_tn
Not Lady Like but give it a try?

See:  NOT A QUESTION. TRIED & TESTED. GOOD LUCK
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1734580_tn?1310477073
Hay my friends. my name is Ravit I am suffring this TN condition for a long time.In my case it happend after a dental treatment, if i can call it a treatment. I am taking Lyrica and it is not easy to me at all. It's a hard pain to deal with. please my friends,I need an advice, what to take??? What vitamins? What better to put on the face cold or hot? my pain is internal I feel it more from the inside, I don't have a problem with touching my face, I guess it different when the cause is a damage of dental treatment then the usual illness. Can some vitamin repair it over the years??? What about Acupuncture did any of you tried? And did any of you heard of a homeopathic plant named spigelia ??? For me, i think surgery can't help. Sorry if my English is not perfect it's not my mother language. Thank's
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Avatar_f_tn
Hi Ravit,
Do you know if you have Type 1 - brief intermittent pain like electric shocks or Type 2 - constant pain like burning?  Some people have pain relief from accupuncture.  Some people have pain relief from upper cervical chiropractic (although there are only a few practitioners that know how to treat TN).
I have Type 1 and heat works for me.  But every person is different.
Some people say Vitamin B-12 is good, but it's not a cure.
Have you found a doctor who specializes in Facial Pain?
Wishing you all the best,
Nancy
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Avatar_f_tn
How can this be so painful and not kill me? Is there a limit to how much pain someone can be in?
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Avatar_f_tn
What type of TN or other facial pain are you dealing with?  

The anti-seizure meds (gabapentin, Tegretol, Trileptal. etc) at the right dosage level can stop the pain completely.

Other coping mechanisms can help short-term -- some people like heat (I use a microwaveable beanbag) or ice.  Oragel will numb teeth and gum pain caused by TN and allow you to chew and talk.  Some people have reported success with upper cervical chiropractic or accupuncture.

The main thing is not to give up.  I had to go thru 5 doctors before I found #6 who helped me get my pain under control.  Facial pain is not something that all doctors are experts in -- and sometimes you have to search to find the doc that will be able to help your particular situation.

Take care,
Nancy
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Avatar_f_tn
i have had ms for over 30years and bouts of trigemimal neuralgia for the last 10years i am female 65 years of age now in a wheelchair i have been givin many drugs and treatments over the past 30years most drugs make me worse as they all have side efects on one of my stays in hospital a doctor who was  only passing saw me in pain and asked if i tried oxcarbazepine i took his advice as i had nothing to loose this drug works for me i take 2x300mg twice a day when i have an attack sometimes it lasts for days but can last for weeks it stops me from wanting to die yes the pain is that bad
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Avatar_f_tn
Oxcarbazepine is the generic name for Tileptal and It is what I have taken for TN with good success.  I'm glad it helps control your pain.

Have you thought about one of the surgical procedures?  Or one of the alternative treatments?  
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Avatar_f_tn
I am diagnosed with Atypical Facial Pain.  I have constant pain all the time.. Gabapentyn has for the most part been a life saver.  I have been on it for 1.5 years.. I take 300 mg 6 to 7 x a day.  I believe I have a mixture of AFP exasburated by dental work (the root pain, as I call it).  Hardly anything helps the root pain.  I do acupuncture and have had about 24 sessions and I THINK it is has helped.  You have nothing to loose by trying it.  My doctor (Chiro) says he has wrked with people with TN,, but I am not sure I believe him.  however, he keeps on trying all sorts of things to help me get better. And like I said, I do believe the acupncture has helped.   We are still doing it.  We also started tyring HYPERBERIC OXYGEN TANK.. I only did this once so far. Stay away from sweets, dairy, sugar, wheat.. they all add to inflammation.  Staying away from them may help.
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Avatar_f_tn
Hi my name is Dina and I been dealing with TN for 2 months and I must say it is so very painful that I rather deliver a baby. The pain comes on and there is no turning back I feel like the right side of my whole face and head has been shot that's just how I describe it. I get very scared when these episodes come and you fell helpless and there is nothing no one can do to comfort you it is just that bad! I do believe dental work has triggered this condition and I just pray to god I can handle it. The neurologists has me on nueroten 3 times a day I just stated after 30 or more episodes Iam praying this will help in time. It is conforting to know that there are other people with this because at first I thought the doctor was wrong about my condition  but I do know now it is real and it is life changing it takes your joy away so I guess this is in Gods hands and I will just have faith we can all get the help we need to be pain free. God bless you all!!!
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Avatar_f_tn
I'm so sorry you are dealing with TN. It is scary when you get a jolt of pain and you just have to wait for it to pass. Medication at the right dose can help to stop the jolts of pain. Be aware that you need to wean onto the medications slowly and build up to the right dose and the right timing of the dose working with your doctor.
Have you had any tests?  Like an MRI or MRA?  TN can be caused by a blood vessel or vein pressing on your nerve. Sometimes an MRI/MRA can show that compression.  It can also be caused by Multiple Sclerosis and an MRI can help rule that out.
Some people can get their pain under control with medications. Other people decide on surgery such as a microvascular decompression or MVD when the MRI shows a compression. There are also other "destructive" procedures/surgeries that can give relief.  Still other people have found that acupuncture or a specialized form of chiropractic help control the pain.
One way to ease the pain temporarily is to use a warm compress. I used a microwaveable beanbag,  the warmth eased the pain a bit.
The main thing is to keep positive, find a good doctor experienced with TN, and research all your alternatives. Please know that there are people who find pain relief in various ways.
Take care and keep in touch
Nancy
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Avatar_f_tn
Hi I just read your post I"m so sorry you are in so much pain. My older sister also has trigminal neuralgia  I did some research a few years ago  on her behalf  and came across a Dr in Israel who had developed a device  that you wear  at night  called a pain sheild  low intensity ,low frequency ultra sound which they said help with the pain .my understanding from the research was the the blood vessel  going into your face was too close to the nerve and over time the pulsing of the blood irritated the nerve which then results in the neuralgia. Unfortunately my sister didn't peruse the information on this device  but I kept the email I got from them they claim it is successful in 75 percent of people  with T N   good luck  Ruth 1246.
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Avatar_f_tn
My name is ruth1246 the comment I just posted was for you sorry I forgot to put your name in also for anyone else who wants to email these people as well . If you get a pain shield I would  be grateful if you post a comment as to how effective it was.  All the best ruth1246
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Avatar_f_tn
The other day I was researching TN on my computer and I located a Doctor who specializes in treating people like us.  I don't remember his name but he is in Myrtle Beach, SC. If I ever get close to that area I am going to see him just based on what I saw on his website.

Between the MS and the TN I am tired of this pain battle.  Has anyone been evaluated and treated at any of the big name hospital groups like Mayo, Johns Hopkins, Cleveland Clinic?  I am so curious about how they treat TN.

All we can do is hang in there and learn from each other as to what all is going on in the world of current treatments.  I have learned so much from reading all of the comments in this forum.
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Avatar_f_tn
I have had TN for about 6 years. I am a 32 year old female. I have tried to stay away from prescription medications and have done well thus far. Pain has been bearable up until last week where pain was unbearable and I had to stay home from work. I noticed that I had stopped taking fish oil for about a week before this last episode. I have found that fish oil helps keeps the pain at bay for me.  I usually take two 1000mg fish oil capsules a day, one in the morning and one at night to keep levels constant in my body. Right when pain started I begin the fish oil regimine and I am just about pain free now, one week later. However, I do not think the pain I have is as severe as other cases. I have a doctors appointment this week and will ask for a presciption for gabapentin, I am finding that TN has become progressive for me with less time in between attacks and attacks have become more painful. Additionally, I have an appointment this week with a chropractor. I have found that working at a computer and looking downward, either at my phone or a book, causes some sort of pressure in my neck that when I look up causes the TN nerve to fire. Also, the placement of pain has always changed so much. It has always been right side but previous attack was by my eye and eyebrow, and this last one was in my bottom jaw. Does this happen to anyone else?
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Avatar_m_tn
I am a 69 year old female diagnosed 2 years ago  She put me on gaba and since I have a history of vertigo, gaba sent me to the moon and back every waking hour.  I came off of it and am trying to deal with the pain and constantly running eyes.   Any exercises  you can recommend?  I have two car accidents involving the head/neck and have had my neck fused.  I know there are people worse and I thank God for what I don't have.  :)
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Avatar_f_tn
If you have cracking in your jaw then that is related to TMJ not TN
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