Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.
Hello all,
im new to the forum!
i needed to vent some stress, as im absolutely petrified!
I started getting what felt like tooth ache about 4 months ago, it came and went, i had several trips to the dentist and one week in march it came and never left, the toothache progressed into my jaw and eventually my cheeks, nose and forehead and before i knew it i was having unbareable waves of pain across the left half of my face, i thought i was having a stroke!
after two A&E visits, a gp trip and several phone calls with 111...i was clinically diagonsed with suspected TN. Im 27 years old, im petrified how and why this happned, im a healthy girl, im fit, i eat well and felt like i didnt deserve this.
The Dr gave me Carbamazepine, diclofenic and cocodamol and kind of left me to it...she admitted she hadnt much experience herself in this feild. im a nurse so i was persistant i had an MRI and a neuro referal. The MRI results have come back this morning and there is an artery compressing the trigeminal nerve.
As it stands, the pain isnt too bad, i only get the odd wave (which is only probably a 3-4/10 on a pain scale) and thats when i eat.
My lips are always numb though and quiver.
i havent been in work since the begining of April - in the beginning it was the pain and as i titrated up on the dose of carbamezepine the side effects got worse and worse....i have headaches, dizziness, feel like i could sleep anytime of the day. I have a migraine which i have had for five days! Im currently on 600mg.
Everything i read online is negative, i havent found any happy stories!
We were trying for a baby for almost 18months before this came along but of course thats on a standstill now. I feel like ive lost months of my life, i dont know how people live with this for years.
I had a car crash two years ago which left me which a dodgy back and shoulder and everynow and again i get a numb right arm....do you think this could be something to do with it?
From anyones experience....
is remission even possible?
How is TN during pregnancy? Or am i doomed to never have a baby!
Does anyone get headaches/migraines off Carbamazepine.
Can anyone recommend herbal remedies?
Is anyone else suffering this young?
Id appreciate anyones advise or just experience, my family and husband are amazing but i cant help but feel like no one understands, Maybe the Neurologist will be able to tell me more and give me the answers i want. Im petrified this is going to be now for the rest of my life. Its a new me, one i dont like!!
im new to the forum!
i needed to vent some stress, as im absolutely petrified!
I started getting what felt like tooth ache about 4 months ago, it came and went, i had several trips to the dentist and one week in march it came and never left, the toothache progressed into my jaw and eventually my cheeks, nose and forehead and before i knew it i was having unbareable waves of pain across the left half of my face, i thought i was having a stroke!
after two A&E visits, a gp trip and several phone calls with 111...i was clinically diagonsed with suspected TN. Im 27 years old, im petrified how and why this happned, im a healthy girl, im fit, i eat well and felt like i didnt deserve this.
The Dr gave me Carbamazepine, diclofenic and cocodamol and kind of left me to it...she admitted she hadnt much experience herself in this feild. im a nurse so i was persistant i had an MRI and a neuro referal. The MRI results have come back this morning and there is an artery compressing the trigeminal nerve.
As it stands, the pain isnt too bad, i only get the odd wave (which is only probably a 3-4/10 on a pain scale) and thats when i eat.
My lips are always numb though and quiver.
i havent been in work since the begining of April - in the beginning it was the pain and as i titrated up on the dose of carbamezepine the side effects got worse and worse....i have headaches, dizziness, feel like i could sleep anytime of the day. I have a migraine which i have had for five days! Im currently on 600mg.
Everything i read online is negative, i havent found any happy stories!
We were trying for a baby for almost 18months before this came along but of course thats on a standstill now. I feel like ive lost months of my life, i dont know how people live with this for years.
I had a car crash two years ago which left me which a dodgy back and shoulder and everynow and again i get a numb right arm....do you think this could be something to do with it?
From anyones experience....
is remission even possible?
How is TN during pregnancy? Or am i doomed to never have a baby!
Does anyone get headaches/migraines off Carbamazepine.
Can anyone recommend herbal remedies?
Is anyone else suffering this young?
Id appreciate anyones advise or just experience, my family and husband are amazing but i cant help but feel like no one understands, Maybe the Neurologist will be able to tell me more and give me the answers i want. Im petrified this is going to be now for the rest of my life. Its a new me, one i dont like!!
That sure was a lot of questions, and I understand that.
Yes, I was young too when first diagnosed, younger still when I first started experiencing the pain.
I finally diagnosed myself (Dad had TN) and the doctor agreed with me. MRI showed nothing. At least that ruled out other things it could be.
I had already had my girls so I can't answer on your question pertaining to pregnancy.
I too took Carbamazepine (tegretol) otherwise known on here as forgetitall.
Stress is your main enemy so avoid it if you can. Since my place of employment of 25 years was sold I've not had to take meds and have had no more than a few mild twinges. During the pre-sale I was having multiple attacks a day while still on the meds. I even increased my dosage for a few months.
There IS hope.
There are several different treatments. As with the TN being different for each, so are the results of the different treatments.
My Dad had great success with the gamma knife surgery. He was pain free for 4 1/2 years. When the pain came back he went and had it done again.
Look around here on the site and read of the different treatments.
Oh yes, the Carbamazepine did not give me migraines.
There are also some great books out there on TN.
I'm sorry I'm not more help. I can tell you though that I felt the same at one time. Worried that my life was going to be nothing but pain and I was so young!
I still worked full time. Raised my girls. Was present at the births of my grandchildren. Eventually I just took my monster in stride. I did whatever I wanted to. Learned to ride a motorcycle, got a kayak, mowed the lawn, went on vacations. I just made sure to take my meds and if I left the house made sure I had pain pills, zanex and tegretol with me just in case. Now I don't take any of them!
Things can and do change!
Wishing you calm nerves and peace of mind,
Sunflur
Yes! There is hope! Like everyone has said, managing stress is a huge thing! My story is so similar to yours. I was 31 when diagnosed. I had the tooth pain very badly (even begged my dentist to do a root canal or pull a healthy tooth... Which he refused to do) :-) I ended up in the ER one evening for the pain and was diagnosed there and sent home with Tegretol. I didn't want to just begin taking the medicine without looking into other options. The pain/attacks were unbearable and I felt hopeless and doomed to be in constant pain. I had an MRI and saw a neurologist who also suggested the meds. My sister had been going to a chiropractor for a shoulder injury and mentioned to him what I was going through. He had done research on TN but had never seen/treated a patient with it. He asked to see me and I agreed (pain was already so great, I thought it couldn't hurt). He did what he called mayofascial release techniques (basically tearing the adhesions apart in the area around the jaw... Which helped relieve the pressure around the nerve area and also did this to the muscles that run down the side of your cheek/back of the mouth by massaging inside the mouth. That night I had a huge attack. But next day the pain lessened. Three days later I went in and he did the same techniques. Again Huge attack took place that night. Next day pain lessened and disappeared. It has now been two years without an attack and without meds. I do my own massage techniques like he showed me when I feel stressed and like it might be beginning to flair up. Others on this site have had good luck with meds, acupuncture, and some with the surgery. Do what works for you but don't give up hope. The chiropractor I use is in Oregon, but maybe he could conference with someone in your area if you are interested.
Big hugs,
Amanda
Around 6 months back, I had severe toothache and jaw pain for a week and painkillers were of no use whatsoever. Visit to the dentist confirmed that there was no problem with my teeth. My physician diagnosed the problem as TGN and put me on Divalproex Sodium which gave me immediate relief. After a course of nearly two months, i was completely pain free for 3 months. Had a relapse three weeks back because of stress. Back on meds but this week has been bad.
I too have the same question regarding conceiving and carrying a child with this condition. Is it safe? Is it possible? How does one manage pain without meds. Not that painkillers make too much of a difference..
Am contemplating alternative medicine, heard that homoeopathy has meds which help with neuralgia. Will update once i explore that option. Have also been reading up on holistic healing because our body is a manifestation of our mind. Have to work on it though :)
Take care and may the pain disappear..
love and hugs
Netra
Yes, "remission" is possible. By that I mean that the TN does not go away, but the PAIN can, and does go away, sometimes for weeks, months, years at a time. Many of us can report this. It has happened to me several times, and I was diagnosed 7 years ago.
If your doctor is not experienced in dealing with TN, find someone who is. It makes all of the difference. My doctor suggested a "cortisone block". That's when cortisone is injected to the affected areas in the face, and blocks out the pain. It really works. I have been able to reduce my medicine, tegretol, by more than half. I now take only 300 mg. of it a day. The shots can be taken 2 or three times a year. Maybe you could check into that.
I really believe that my TN was also caused by an accidental blow to the head. I guess it can start that way. My doctor seems to think so.
Since you are concerned about pregnancy, maybe check into some of the surgeries available now for TN. I have not, because I am doing so well on minimal medication.
TN is quite rare. So, many of the people who write about it on the Internet may not have any experience dealing with it.
Again, I have had it for 7 years, and I've only missed 1/2 day of work because of the pain.
There are horror stories out there, but there are also good ones.
I want to send you much love, and prayers. Please continue to let us know how you are doing. None of us deserve to have TN.
I've had TN Type II or Atypical TN which is constant pain 24/7 no relief. I was also given Carbemazipine and Baclofen for the pain. It keeps it under control but with break through from stress and other environmental changes cold, heat, smells and noise.
I also get migraines which I take Relpax and Diclonofac depending on the type of migraine.
I'm older than you so I already had my child so I can't answer that one.
I never tried herbal remedies I'm afraid to stop any of the medications the pain was so severe I wouldn't take that chance.
Some people have gone into remission but not that I know with my type of TN. People have said they've had surgery but my neurologist suggested to hold off unless the medication stops working... last case scenario.
It;s hard for your spouse and family to understand only we know what we go through. It's an invisible disease that is not seen on the outside so people don't see what you're going through physically and mentally.
There are great books out there and the side effects get better over time. The shaking and jerks subside I'm on the highest dose of Carbemazipine I once threw coffee at myself... not a good time.
I've lost quite a lot with this disease driving, my job, friends, activities and communication. but the people that stayed close to me and found how to have a new friendship with me are my true friends and family.
The changes are hard to deal with and sometimes depressing but I want you to know there is living with this disease if you try to keep positive and know you will always be facing new obstacles. I hope things are better for you today than yesterday.
Linda
In December 2014 I had a terrible flare-up. I couldnt believe it was possible to endure such intense pain. My doctor prescribed carbamazepine, which worked for a while, but because I kept having pain I was ready to undergo surgery and began to investigate my options. Then my neurologist suggested Pain Shield. After 2 months of treatment, I stopped with the carbamazepine and other painkillers because Pain Shield has reduced my pain and I almost can function without any trouble. Pain Shield is a lifesaver.