Curious about how your bilateral TN came to be?

1

In 2002 I was dx with TN, it was “classic” on my right side electric shock like pain just under my eye. Wind was a huge trigger. I was put on Tegretol and slowly worked up to 1200 mg. My breakthrough pain 3 months into TN occurred on my left side.
Breakthru pain for me was a constant boring pain, ice pick in the ear feeling.
My neuro at the time said impossible it’s TN,as bi lateral TN is so rare.

I knew I had TN, there is NO other pain like it.
My GP agreed and we stuck with the Tegretol. The TN lasted about 7-9 mths and I was able to slowly wean off the meds with no reoccurrence of TN.

8 yrs with NO TN pain…
Then in 2010 I started feeling the ice pick in the ear feeling, thought maybe ear infection, 2 days later experienced classic TN pain in lower portion of face, teeth jaw gums, electric shock pain, triggers were eating, drinking,talking brushing teeth etc

Saw neurologist back on Tegretol at 800mg doing well, start weaning off med, pain free for 2 months and then it’s back…( feb.2011)

Back on Tegretol, 800 mg good until April 2012 relapse, breakthrough pain on LEfT side again work up to 1600mg for pain control…pain is ice pick in ear, boring constant pain in lower teeth.

End ofAugust breakthrough pain still left side same pain presentation.
See Neuro, add Neurontin, currently on 600mg of that along with 1600mg of Tegretol.

I am really interested to hear about how others with bilateral TN have presented, and what your breakthrough pain is like while on high dose meds ??
Thanks in advance!
Mimi

2

I had TN start in march of this year, by April the pain was so severe I couldnt work. First I was told it was dental, then sinus infection, then I went to the ER and was told I was trying to feed my habit! I finally had a doctor diagnose me in late April and put me on tegretol, which I ended up with serious side effects. My body hates any kind of medication so I am an odd ball of sorts. By june I started getting twinges on my left side, the worst is on the right, I get a shock about 1-3 times a week and it is more of an annoyance than anything. I also get this weird creepy feeling.

I am scheduled for an MVD in october for the right side, the neurosurgeon saw a major compression on the right side and minor on the left. His feeling was that the left side may not need surgery since it only happens occasionally, but if it gets worse, then I will have to deal with that.

I have the mostly tn2 type pain as well, i take antidepressants and narcotics for it and that has helped a ton with the pain. I can get through the day now if nothing else, and i also had a glycerine rhizotomy on the right side which got rid of the lightning strike pain.

Bilateral is not as rare as doctors think and there is a group on here for bi-lateral pain

Wendy

3

High Mimi
Yes! Bilateral TN is extremely rare, only the most unfortunates like us get it. As it is, TN is not common at all. The proof of this is most GPs have just studied during graduation thereafter during practise they seem lost & have almost forgotten details of this disease. My TN Started on R/side some 50 years back, b4 diagnosis lost some good perfect healthy tooth. I ended up in craniotomy. that time MVD was in its infancy less known. Some 11 years later in 1974 started on left side & since than I m on tegretol & Gab. Mimi u r lucky with 8 years remission, I never heard of such long remission.
I do get remission ranging from6 months to 18. Don’t lose hope u will soon get another one.
Even with MVDs permanent cure is not seen. Although the surgeon claim permanent relief from pain, but there is no follow up, the patient r followed up & if they do, at most 5 to 6 years.
MVD is good where the medication fail to control pain or adverse side effects.
I m still without any interference with the nerve, & continuing with meds.
Best wishes
Yakub

4

hi Mimi - I was diagnosed with TN on my right side, the most common side,a year after I had decompression surgery for Chiari. I tried meds for 2 yrs before my NSG did a mvd. Found artery compomising nerve. A year later had the same pain, original nsg said it was permanent damage, so I got a second opinion and another mvd which found a vein above the same artery compomising nerve. Vein was cauterized. Shaortly after that I had tremendous pain back of head, base of skull, and my eye felt like it was being pulled out of the socket. Turns out the scar tissue from original decompression surgery for Chiari was compressing occipital nerve - another mvd. at this time I was experiencing pain on left side. To date I have terrible pain still on right and sporatic pain on left. Atypical dianosed I am now on 1000mg tegretol, 60mg baclofen, 60mg methadone, ketamine and percocet as needed. accupunture has been tried. I am in constant pain with breakthrough pain anywhere from dull throbs in temple to horrible "10" sharp pain lacerating my head from temple to jaw. Have gone to er and have been admitted to receive intervenious steriods and pain killers to stop cycles. Cycle keeps on coming back. I still work 2 jobs, which I don't know how I do it and am medicinally f'd up all day long. Hard to remember things. As a teacher it is very frustrating.

5

Hi Mimi, To begin with I come from a family history of TN patients,it is very hereditary in my family ,but, bi-lateral TN has been mostly within my immediate family. Along with myself, my brother had MVD surgery and later , 2 rhyztomy procedures on the same side to get relief, then exactly 10 months later he developed TN on the other side as well, he just dealt with it with a lot of medication until he passed away almost 2 months ago. He was scheduled to see the neurosurgeon in two weeks but never made it, he was taking 1200mg of tegretol to get relief and Tylenol has well. He would always say he was so thankful though for Tegretol.

I had MVD surgery two years ago and 7 months later it started on the left side for me. Our TN pain is the electrical shock type pain. I have never been able to stop the tegretol but so for I am controlling the pain with 200 mg. I do not believe once you get bi-lateral TN you ever get completely rid of TN. My brother would say it always let you know it is still there , even , if you get those rounds of remission , it always comes back around and most of the time it is the electrical shocking pain. It is a very frustrating problem to have.

6

Good evening MiMi,

First I was taken because my grandchildren call me MiMi. I am in a quandry about mine. August 2011, I started having pains in my right side kinda like an earache lower jaw ache. Especially when a cool breeze would hit my face, the pain got worse. Thinking it was a tooth problem I went to the dentist. Dentist sent me to Oral surgeon.Decision was I had a root canal,that needed to come out. Pain became really bad. Tooth came out pain got worse, tooth became dry socket, then septic. Lots of codones, and tramadol, antibiotics. Two months later pain not being touched with meds. Went to a ENT, said I was a slow healer. Started with chiro who sent me to accupuncturist, that worked for short stints. Then referred to Craniosacral therapist, this has been my saving grace most of the time. February 2012, back to ENT for referral to Neurologist, sent to a Neurosurgeon, said trigeminol, sent to a neurologist. From last August I have had 3CAT scans, and 4 MRI's, up to present time. Husband started taking Cranio classes, so I was seeing Cranio once a week and husband fill in in between. Have been on 900 to 1000 Mg Tegretol a day since March. Gabapentin didn't work. Finding out barometric pressure changes take me right down, and time of the month does me in as well.Saw neurologist this past Wednesday, still not 100% sure if Neurologia, or Neuropathy. Said Neurolagia does not always show up on test. She thought Tegretol would take care of pain,but since it has not and the pain is not localized it has become wide spread throughout the head at different levels comes and goes at different levels, yet steady all the time, in trigeminol lower area. So we are awaiting insurance approval to start Botox treatment around the hair line over the forehead. This treatment is to help stop the other nerve pains, and muscle migraine type headaches, also at times works on the trigeminol nerve. If this treatment works it will be a series of about 10 shots every 3 months. When the other pain stops then she will start backing me off the Teg to see if it has helped with the trigem.

7

Thank you everyone!

I really appreciate your responses, there are some similarities and some differences with all of us.

I hope more of us share our stories.

Wendy, I’ll be following your MVD closely and thinking of you!

Yakub, you’ve had such a long journey, I wish you much luck in maintaining your pain and many good days ahead!

Deanna I don’t know how you teach especially with the meds affecting us the way they do and the pain that pokes through every now again, huge kudos to you girl!

Linda, my sincere condolences with the loss of your brother, I hope with time your shared memories of good times brings you comfort in the days ahead! I agree with him, I’ve been so grateful for the Tegretol!

Molly, I’m happy to hear the craniosacral therapy has worked for you, how great that your hubby took classes to help you! Best of luck with the Botox!
Oh and my name is Miriam, I acquired Mimi as a nick name years ago, and it stuck!

((hugs)) and thanks again for sharing! Mimi

8

Mimi thanks so much for the good wishes! I will keep everyone posted on how I do with the surgery. If it works, I will definitely be glad to post, it would be nice to have another success story on here. I am confident in my neurosurgeon, so I have the highest hopes that I will get my life back. Thanks so much for thinking of me

Wendy

9

Mimi,

my right side started justolike yours out of the bue actually a damned awful headache for two weeks before the shooting started which was there then every day for four years. It,spread slowly to all three branches on the right. A year or so later the left side shot when I bit on a piece of toast. Well long story short, 1600mg Tegretol calmed the blinding shooting pain which was later dealt with by a very successful MVD removing a knot of blood veseels on the right side. However the left side which wa s lower burning torture with one tooth being the main trigger, never responded to any anti e medications but again responded well to an MVD to remove a blood vessel and artery pressing on the nerve. Took four years of scans to find both sides had compressions and was treated like a moron hypochondriac all that time, when I KNEW there was something really amiss. I was proved right.

Anyway recently last MVD (2000) was undone by more surgery as it as felt the nerve was now being pulled in two different directions and I had become so over sensitive to cold air around my left cheek. Sadly I have huge damage, sight issues, tongue and eating issues and a twisted face. So, if no compression can be found, then I can only suggest that Tegretol was great for the blinding shooting pain, but the slower burn and I now have that 24/7 in my cornea, does not respond to any anti es I am on my fifth set so trying all other drugs for neuropathic pain but the corneal erosions are very painful and badly affect my sight. I personally never had any relief from Neurontin, now on lyrica but the eye sensations are many and very distracting, the burn is just awful and does not stop, like acid in a cut. Given I never had any issues with my eye let alone my sight before this last MVD I am devastated. Beware of too much surgery and Neurosurgeons who belive they are invincible.

10

Hi Elissa, at first I was so pleased to read of your MVD success, only to continue reading …I’m so very sorry for what you have been through and are going through. I really appreciate you sharing your story. I pray there is some hope for a remedy to alleviate the pain you are now in.
Do you have a new neurosurgeon or specialist that has offered any advice?
You are absolutely right btw, we normally know our bodies better than these doctors do!! I have been made to feel like a hypochondriac before when I was going through a hard time medically years ago. I too was able to prove them wrong, it can be very frustrating.
Thanks again for sharing, ((( hugs ))) Mimi

11

Hi Mimi
Sorry to hear about your bilateral TN. It is very rare, I too have bilateral, started some 47 years back on R/side. I was just 17 than. Ended up with craniotomy with nerve resection of 2nd & 3rd div. of trigeminal nerve. No pain since than as the surgery has made my half face com

12

Hi Mimi sorry I left my reply half as I pressed send button by mistake, in continuation I have to say that as my half face is completely numb hence no pain there. But in 1974 u had pain on L/side since than I m on tegretol & gabapentin it is controlling the pain but u know with side effects our life is miserable feeling drowsy & unstable on feet. I was really surprised to know that your pain had gone away for 8 years. The longest pain free period was 18 months for me. But the pain always return back with increased severity.
I hope you are feeling well. I m thinking of going for MVD surgery in USA. As I m fed up of side effects of medicine.
Take care
Kind regards
Yakub

13

Hi Yakub, yes can you believe it? 8 yrs pain free!!
Unfortunately now that it’s back it’s becoming resistant to meds…so I’m also considering MVD.
Do they not do MVD where you live?
Yes, the side effects of the meds are no fun either! I’m getting very tired of it.
Best wishes as you explore ways to be pain free! Stay in touch!
(( hugs )) Mimi

14

Hi Mimi in England they do MVD, but this surgery was first done in USA, by prof.jannetta, it became so famous that in USA it came to b known as Jannetta surgery. I had written to him in 1974 expressing my desire to have MVD. But pain had gone away for long time, so I did not go for surgery. Thanks to Tegretol thus wonder drug has kept us going at least initially controlling for long period. I will keep u informed when I go for MVD. Wish you well take care.
Yakub

15

I was diagnosed with TN beginning of September 2012 by my primary doctor after an ER visit with a diagnosis of retinal migraines. He put me on Gabapentin and referred me to a neurologist. In October 2012 I saw a neurosurgeon who confirmed the diagnosis and send me for an MRI & MRA. Changed me from Gabapentin to Tegretol because a week before I saw him I had a 3 hour long attack and I cannot even put into words the amount of pain. I told him I honestly didn't think I could handle it if I felt that amount of pain again...I swear I was close to passing out! My pain comes on with an electrical shock out of no where and then it just keeps escalating with every beat of the heart. I feel it in branches 2 and 3 (i believe) sinus, top jaw & ear as well as the bottom jaw. Then it ends with the same electrical shock.

Looking back I know I have had this for years but never put two and two together. I had my daughter back in April 2012 and two weeks after having her I had my first severe attack on the right side of my face. The seemed to come once every 3 weeks then down to 2 weeks etc. On September 9, 2012 (during the Cleveland Browns home opener) I had an attack so bad my mom came and took me to the ER. They sent me home saying i was having retinal migraines. Followed up and found out it was TN. I think somehow the birth of my daughter (which was extremely difficult) kicked it into overdrive?!?!?!

I was at first put on 200mg of Tegretol a day and told after 5 doses if I was still feeling pain to increase. I had my follow up appointment for my test. I was currently at 400mg and still having pain. Hour long attacks a couple times a week. He told me to go ahead and jump up to 1200mg a day (which he told me was my max i could go to). On the MRI he said the right side showed a narrowing of the nerve right at the brain stem and he said that is where the compression was at. Then he said it showed CLEAR AS DAY on the left side an artery wrapping around the nerve!! He told me down the road I would most likely get it bilaterally!!!! He says I am a prime candidate for MVD and would like me to get it. He said usually it takes people years to max out on the medicine and I did so in a month.

I am seriously thinking about the surgery but was hoping to do so when my children (2 year old and a 6 month old) were older, but I know now that is going to happen. I am still having attacks about once a week sometimes an hour long sometimes like 25 minutes...if they are shorter I get 3 to 4 a day.

Then on November 3, 2012 I started feeling a tension in my left jaw and a freaked out, thinking OH MY GOD now already!!! I thought I was just freaking myself out because of my doctor's appointment. I noticed the tension was coming on after I ate. By Monday morning I knew it was real! It is different on my left side than it is on my right (right side triggers stress and chewing). My left side is MUCH more sensitive and chewing, talking, breathing through my mouth, wind...basically anything I do that moves my mouth or touches my teeth sets it off. My first "attack" was off and on (stabbing shocking and just an underlying pain) would go away after about 20 minutes of me literally not moving my mouth...would come back at with any trigger. I woke up on Nov 10 with no pain in over a week!!! To only get hit on my right side with 3 attacks. Sunday was good, no pain...but today I am feeling the tension like pain in my left jaw. :(

I have been on a steady diet of Shakeology shakes (made by Beachbody...EVERY nutritious) for breakfast and fruit smoothies for lunch. I usually skip dinner...unless I am desperately hungry (and i mean desperate!!) I will eat something really soft!!

I am putting in a call to my neurosurgeon's office today just to notify them of the change and also to get something for headaches! I think it is the high dose of Tegretol, but I have been getting horrible headaches on top of everything else!!!!

Thanks for listening!!!

Sara

16

Hi Sara so sorry the tough time u r having with pain. Even I was having headaches besides TN pain. This was due to max amount of tegretol & phenytoin i was taking on a empty stomach I could not eat for the fear of escalating pain. Even slight movement of my jaw would start of continuous burning pain for upto half hour I had to lye still on bed. I realise what u r going through. If ur neurosurgeon advises u for MVD u should go for it make sure he is well conversant with this type of surgery.
My prayers r with you. Wish u best of luck.
Yakub

17

I have just been diagnosed with bilateral TN, it all seemed to happen very quickly…

I started just last year, April 2012 with severe headaches on the left in the front (near the temple) and ear pain. In early May I started getting the extreme TN strikes in my left eye and around the left eye.

Fast forward to September when I was finally diagnosed with TN (I read that only 1% of TN cases present on V1 only, perhaps why the doctors didn’t figure it out for quite some time.). The Tegretol helped immediately upon taking it, started at 200, eventually up to 800/day. I was already on gabapentin for fibro and a muscle relaxer.

In November I started getting some pains on the right side as welll.

In January I went to Johns Hopkins for a left side MVD where I mentioned the pain on the right, they said bilateral TN is very rare and they suspected it was sympathetic pains for the left side TN…I found out at my post surgery check up which took pkace about 8 weeks after the MVD that the doctor had seen a tiny compression on the right side as well,

MVD was successful initally. They had found three blood vessels compressing the nerve. I felt so much better after a week that I started work again 10 days after surgery (I work from home). I was reducing the tegretol and when I finally stopped taking it is when I realized that I still had some pain on the left side, but no where near as bad as it was before surgery except the ear pains that come about. The right side is an issue, near the right eye and right jaw and now the left jaw/teeth are a bither as well, which is new.

Next step is for another fiesta MRI, FedEx it to the doctor at Johns Hopkins (I am in Chicago) and the doctor said he would call me the day after he received it (and reviewed it).

I have headaches again, with TN stikes on the right in the eye, and teeth/jaw pain. The left side pain is in the eye, sometimes the temple and I get the ear pain as well.

I am trying not to take the tegretol as I am a single mom and I have to work, tegretol makes my thinking way off and makes me very tired…I need to work so I can pay my mortgage and so forth, at least I am lucky enough to work from home. I use ice bags, I have an ice bag on my head now, it helps some.

18

Strangely enough by either coincidental timing or proximate cause my pains started shortly after I had a Tazer training wherein I was required to be Tazered myself.

My pain started with the classic pain on the left side side of my head emanating around the temple area. As it progressed it went to my left eye and rarely my ear. It continued to progressively get worse pains and a couple times it felt like steel needles coming up through my lower front teeth. I was being treated for this for several months when, Bam. Out of the clear blue I had a pain hit the right side of my head around the temple area.

My temple and eye pains are mostly a very quick potent stabbing electric shock. The eyes feel much more severe and sharp. When I told the Neurosurgeon at the University of Washington he looked at me very skeptically, stating it was very rare. I’m thinking so, what is it then?

As time goes by shocks go to the same areas on the right side of my head. They occur more rarely than the left but no less painful. I take a cocktail of medicines but, no narcotics. They do help keep things to a dull roar but, still enough to make for some really bad days.

My triggers are light breezes (especially when cold), singing or humming, stress, barometric changes, head cooling off sweat after working and sometimes wearing glasses. Only sensitive to touch after it flares up.

Like most of us it is always a trade off between side effects and helpful qualities of the meds. My main problem is low salt due to oxcarbazapine.
More tiresome to me ( no pun intended) is lethargy, poor balance and memory issues when my meds and pains are at a max. I did have an almost total remission from last Feb until early June. Now it’s back up to where it was and I jacked up my meds and got it back to sporadic breakthrough pains unless it is set off by my normal triggers. People don’t understand why I don’t mind 90 degree heat and no breeze.

Through all this fun I’ve had one Gamma Knife…very short relief, then a MVD…no help. Finally I had 2 balloon ganglioysis surguries. The first gave some pain relief. The second had a bit more relief except two weeks after the surgery, I had the worst pains I had ever had that were located around my left eye.

Since the surguries I have used meds to control the pains to a reasonable (if there is such a thing) amount but, as stated earlier, there are a number of side effects. One of the side effects early on was a bout of manic depression. A change up and adjustment of meds put that away.

No matter what, life is still good. I just learn to live with it. I have learned to tolerate other pains of a different nature to a large amount. I wear a painters type mask and hat outside ( great fun at the mall, near jewelry stores and banks! ). I live in a small town and everyone knows it is me now so no big deal until I go out of town, then I get the ID and doctors letter ready for regular display.