Officially diagnosed today. What do I do next?

General General TN & GPN (Old Site)
1

Wow, what I suspected was confirmed. Now the reality of how to deal with it.

But, back up. The neurologist I saw, who gave me a TN diagnosis, did not know that there is TN1 and TN2. Hmmm, should I run? Get a 2nd pinion? She just has never heard of such a thing.

Anyway, she wanted to start me on Tegretol, but I refused due to fears of side effects. Her next suggestion was Trilepal. I have not yet started it as I want to do that close to a weekend so if there are side effects, I won't have to work. Anyone out there on Trileptal and doing ok w/no sedation, nausea, etc...

She did order an MRI and when I asked about getting a high resolution t3 type, she insisted that all MRI's these days are the same. IS that true?

She also said that to see a neurosurgeon, I would have to try and fail on at least three medications. What about folks with TN who don't want to be on meds and just want to try to fix the problem? Is that unrealistic?

Any insights on these issues, or others that I should be considering are greatly appreciated.

2

I am on 300 mg of neurontin a day, and it has worked okay. Unfortunately, it can be hard to not be doped up with TN. I am having to get additional pain meds (and nausea meds to off set those side affects) that are safer than regular medicine. I wish you luck in finding a treatment that works!

3

Hi Kassie,

I am a patient, not a doctor so I am going to give you my 2 cents worth that hopefully points you in the direction of a cure.

Keep asking questions!!!!!!!!!!!!!!!!!!

In my experience with MRI's from 2008 to 2012. MRI are different. They are not all the same. My surgeon ordered 2 more MRIs when the first and second were not determinitive. There are different strength machines and different protocols. There are many different instructions to be made with an MRI.

Tegretol is important in one aspect. I was told that if your symptoms are eased by Tegretol it is an indication that you have TN. So it may be helpful in your diagnosis to try it for a week. Yes, the side effects are that it can make you very drowsy and it effects your thinking. I don't think a week or two of use will cause permanent damage. (I am not a doctor!!!! Please ask one,) Also, Tegretol can make your sodium levels fall to dangerous levels, so if you feel sick on it, it could be from low sodium. Oxcarbazapine(sp?) is suppose to be a time release form of Tegretol that lower the drowsy side effect.

You should try medications before surgery. Why??? Because every TN surgery has major risks. The drugs are a much less risky path to take. I had an MVD and almost died. I had a CSF leak, air in the head, critically low sodium. A couple of days out of the hospital for the MVD, I was in an emergency room and stayed for a week while endocrinologists tried to raise my sodium, while ignoring the CSF leak. So try the meds. The side effects are temporary, while the surgeries can cause permanent painful damage. Also, the drugs are a lot cheaper.

The surgeon should be able to give you this information. The surgeons generally know a lot more about TN than the neuros who just prescribe medicine. I tried at least 6 medicines for my TN.

Don

P.S. you look a little grumpy in your photo.

4

Hey Kassie,
I am with Don in this one. definitely no expert either but I have been dealing with this for many years. I have been to some of the major “well known” clinics. Surgery is definitely the last option. unfortunately for me they don’t feel surgery will help me, because mine came from nerve damage. (sinus surgery went bad). However meds affect people very differently. I am on Tegretol and had no bad experience, no sleepiness. Now they put me on Lyrica, (among many others) and I felt like I was walking in one of those spinning tunnels at the fair. Anyhow hope this helps you. … Ask Questions and keep asking till you get an answer.
Mark
By the way nice hat

5

You like the hat? Yeah, me too. Don said I look grumpy. He's probably right.

Anyway, I just stated Trileptal and feel like you described Mark, as if on a spinny ride at the fair. I sure hope that gets better. I hate all meds in the first place, but living forever on meds that make me feel like this is inconceivable. Mark, why did they change your meds if Tegretol was working? Are you able to function, like at work and while driving?

And, do you think it is important for the neurologist to 1) know the difference between TN1 and TN2? and 2) to provide me with her clinical opinion on what I am? Does this make a difference when making treatment recommendations?

Thanks!!!

6

From a survivor: TN is not curable....It is for life

We go in and out of remission for days/weeks/months/years

I tried Lyrica for 2 weeks--Laughed my ass off - could not drive - too goofy - had to quit brand new job

I tried Gabapentin for 2 weeks-dizzy dizzy dizzy

I tried Trileptal for several months at low dose -- I was the scarecrow of the Wizzard of OZ-Had No Brain

Diagnosis Oct. 2010

MVD surgery Oct. 2011

You won't hardly find MVD success stories here - because they go away and live life - until / unless TN comes back.

I've stayed on here to help others, because I had so much time on my hands - couldn't get a job with gap in my resume - and even after surgery had PTSD and depression from what the oral surgeon and the meds did to my life. I'm a counselor in real life (EMPLOYED now!)

also, so it is theraputic for me to hang around here and I feel if I can help others I should.

I have 2% pain now- (April 2013)

-- I had tried 3 meds - the side effects took away my IQ and memory at low doses -- that was enough for my insurance to pay for MVD--. MRI doesn't usually matter -- 90% of the time they can't see the compression unless they go in behind your ear and find it! When they opened me up I had two.

I don't know if I HAD to trial 3 meds for my insurance - maybe some do, I'm not sure.

I carefully chose my neurosurgeon - he wrote the book - which is our "bible" here Striking Back by Dr. Ken Casey

He learned under the inventor of MVD in 1970's so I'm sure he has taught/overseen and performed thousands! You might have to go out of your area to find a realllly mastered surgeon of TN - He does not diagnose by MRI - only patient story. And the MVD rates of success have even gone up since that book was published!

He put it to me this way when I mentioned how TERRIFIED I was of MVD -- ( He consulted with me over email - till I flew to him for MVD)

Cranial surgeries that are rated as scale 1-10

A 10 is a complicated blood on the brain emergency surgery, a spider like tumor, other brain cancers, risky, slow to heal...

MVD is rated a 1 with him, least complications, easier recovery than most "brain surgeries" -- usually lay in bed 2-3 weeks and go back to your life if all goes well.

There are people who he could not help - he's not perfect - but I am a betting woman and I bet on him

I was a newlywed at 48, could not drive safe and could not interview for jobs or work -- I just got my masters the year before -- you would have never known by the way Trileptal even at med/low dose took my self esteem down the drain. I could not even remember my dogs name.

This is my story - not the average story of everyone on here - except for the med part -- some people choose to hold on to meds until they stop working--and that's okay -- but I chose another path--if you get the book mentioned - you will see there are many options - but the most important thing is to NOT have any Nerve Damaging Procedures done first

if you think you might want MVD someday--brings down the success rates -- but there are people who do those and have mixed results. I studied all this for several months, came here asked a 100 questions, and went to the TNA/Facial Pain website for info.

New data/studies show that the sooner you have MVD "within first 3 years" is optimim for longer term success.

I might have to have another one in 10 years - so be it!

Trileptal will help especially if TN1 -- lightning/tazer like strikes to your face

TN2 / Atypical TN is a burning, boring, constant-ish pain

Put these terms in Google Images - you will be able to show your doctor and family which face pain you have - you will know which one to print off - it will hit you like a ton of bricks.

Lastly for now --Lidocaine Patches and Lidocaine topical cream - prescription -- called in by my reg. dr. - enabled me to keep a lower dose of trileptal while I did my research - I could be almost pain free for 12 hrs. at a time and read and read and learn. Because my neuro did not have but 1 or 2 TN patients -- I had to do the ground work myself --- this is the

case for many of us --- your neuro has to be reallllly versed in this -- most of us here collectively know more about TN than all the neurologists in my state! We are rare and we are only diagnosed 12 in 100,000!

Keep questioning! I am in NO way steering you to surgery -- just giving you knowledge I wish I had learned all at once! Options!

Welcome, glad you found us !

7

My doctor told me the main difference between tn 1 and tn2 is the section of the nerve it affects. My lower 2 sections are the affected ones. I think that makes it TN2. However, he just noted TN on my chart. I started Tegretol on Wed. 100 mg 2x per day and will up to 200 mg 2x per day in a week. I don't have the side effects, but, I'm still having flares. I found that I know the first sign of the flares and today I took a dose of 800mg Ibuprofin and it helped keep it from moving on to the 3rd and most painful stage of my flares. I start with a cheek twitch/pain, then ear pain and finally tooth pain. I didn't get the tooth pain. Again, tonight I felt it coming on again and did the same. Part 1 & 2 are there, but the third part (tooth) is not. Unfortunately, many times I have a flare early in the morning when I wake up. Since I'm sleeping I don't notice the signs and end up with major tooth pain when I wake up. Starting tomorrow, I'm going to start downsizing the amount of ibuprofin I take. Perhaps only 200 or 400 will be enough! I have a question for others on 2 dose a day meds. Do you find it's better to take at exactly 12 hours between doses or do you take it when you get up and when you go to bed? I find that I take it about midnight but by time I go to sleep between 3 and 4 a.m. I don't get up until after noon so I miss the 12 hour mark. Should I set my alarm and make sure I take it at noon? Good luck Kassie. This site has been a tremendous help and even was helpful in my diagnosis. Reading others stories was like reading my life story. My husband commented today that we'd have relations again when I'm cured. Hahahaha I had to make him realize that this is like diabetes, no cure, just learning to manage and live with it. He's scared of hurting me or setting off a flare.

8

Hi I have only been taking Tegretol for a month I take 200mg at night about 8pm and 100mg the next morning at 8 ish I find this works for me but it has taken a few days to stop me feeling drowsy in the afternoon. I cant take ibuprofen due to stomach ulcers. I think it is finding what works for you and accepting this is a rotten condition. Good luck Karen xx

9

Be careful with how much ibuprofen you take in a day. They say you should take no more than 1200mg in a day bc it is hard on your kidneys. I’ve taken 1600 mg in a day with no damage, but you should be aware of the risks since its one of those medications we all just think of as “safe.”

10

Thanks all for their comments. It helps greatly to hear a variety of experiences.

I am on day three of Trileptal and if the side effects continue I have no idea how I can continue to work. I need to work, its not optional, for so many reasons.

I feel a bit crazy because I am wanting to explore MVD so early after being diagnosed (but with 16 months of constant and episodic pain before dx). It is so extreme and frightening, and not a guarantee. But at least it is tangible. a shot at a long term fix. A possible life without pain AND without medications and their side effects. Someone said above that TN= being loopy. I cannot wrap my head around that one just yet.

And, for Cheermom, who asked about the twice a day med users, I asked the same questions to my neuro. She said it is important to take the meds 12 hours a part to maintain a therapeutic serum level of your med. At least that was for Trileptal, which apparently has a short half life.

Thank you all for sharing....

11

Kassie,
I have pretty much been on Tegretol since being diagnosed in 06. I still have uncontrolled flares. I have been from Dr. to Dr. over the years and every new one I would see would always want to try the “newest greatest thing”. Then when it didn’t work they would then say they really didn’t know much about it and send me out the door I do still work and drive. It is scarry and frustrating but hang in there, there is some awesome advice around here.
Cheers

12

Thanks Kassie. I will make it a point to set the alarm and take them 12 hours apart.

13

Speaking of going to MVD sooner than later -- my doubts were less when my family said - plllllease have the surgery so you maybe won't be in so much agony - mental and physical -- It's not like it was life saving brain surgery

but

it

was

14

Just a heads up, it can take up to a year yo fully heal from surgery so you are not guaranteed to not have to quit your job. I had my first mvd last juky and tried to go back to school 2 weeks later. It was an epic fail. My pain came back after 4 months and I had a second mvd 6 weeks ago. I’m looking at a long recovery from this one. Any surgeon who tells you mvd is a 100% guarantee to fix your pain is lying to you.

15

Hey Cheermom, good news…relations with your husband will release endorphins which would make you feel better for some time. He just needs to keep his hands away from your head.



cheermom521 said:

My doctor told me the main difference between tn 1 and tn2 is the section of the nerve it affects. My lower 2 sections are the affected ones. I think that makes it TN2. However, he just noted TN on my chart. I started Tegretol on Wed. 100 mg 2x per day and will up to 200 mg 2x per day in a week. I don’t have the side effects, but, I’m still having flares. I found that I know the first sign of the flares and today I took a dose of 800mg Ibuprofin and it helped keep it from moving on to the 3rd and most painful stage of my flares. I start with a cheek twitch/pain, then ear pain and finally tooth pain. I didn’t get the tooth pain. Again, tonight I felt it coming on again and did the same. Part 1 & 2 are there, but the third part (tooth) is not. Unfortunately, many times I have a flare early in the morning when I wake up. Since I’m sleeping I don’t notice the signs and end up with major tooth pain when I wake up. Starting tomorrow, I’m going to start downsizing the amount of ibuprofin I take. Perhaps only 200 or 400 will be enough! I have a question for others on 2 dose a day meds. Do you find it’s better to take at exactly 12 hours between doses or do you take it when you get up and when you go to bed? I find that I take it about midnight but by time I go to sleep between 3 and 4 a.m. I don’t get up until after noon so I miss the 12 hour mark. Should I set my alarm and make sure I take it at noon? Good luck Kassie. This site has been a tremendous help and even was helpful in my diagnosis. Reading others stories was like reading my life story. My husband commented today that we’d have relations again when I’m cured. Hahahaha I had to make him realize that this is like diabetes, no cure, just learning to manage and live with it. He’s scared of hurting me or setting off a flare.

16

Kassie,

You are on your way to figuring out what is going on in your specific case. I think that is great. Get that MRI is see if there is something visible compressing your trigeminal nerve. Keep trying the drugs in the meantime to see if they have any beneficial effect.

Trileptal/Oxcarbazapine, I was told, is like a time release type of Tegretol. You take the Trileptal fewer times a day than the Tegretol. I was told it is also suppose to make you less drowsy, which for me it was.

Talk to your doctor about things like, how long do I need to take this drug to figure out if it helps my pain? This drug is making me too tired, can I lower the dose? This drug is not working, should I increase the dose?

I hope that a drug or a surgery will help and that you don't have to live with TN the rest of your life. I wish you and your husband all the best in dealing with this.

Here are two links that may be of help to learning more:

Dr. Ronald Brisman's website at http://www.trigeminalneuralgia-ronaldbrismanmd.com/

A video by Dr. Michael Lim at http://www.hopkinsmedicine.org/neurology_neurosurgery/news/videos/lim-trigeminal-2011.html

Don

17

Don, thank you much for the links. I was especially interested in the Johns Hopkins doctor, but was soon discouraged as he did not have much to say about tx for ATN. He actually did not even call it Atypical TN, rather, atypical facial pain. I am not sure what I am as my neuro did not seem to know there were two options. Based on what I read here, I think at onset of this I was TN1,but over time I experience both TN1 and 2 consistently.

Don, did you get relief from Trileptal? If so, what dosage? Is responding positively to a med like trileptal diagnostic for TN?

Any thought on where I can get more info on Neuro's who do surgically treat ATN or people with "the combo pack". I know I am a bit ahead of myself, but I want the best possible shot at this being cured.

Thanks again!!

Don said:

Kassie,

You are on your way to figuring out what is going on in your specific case. I think that is great. Get that MRI is see if there is something visible compressing your trigeminal nerve. Keep trying the drugs in the meantime to see if they have any beneficial effect.

Trileptal/Oxcarbazapine, I was told, is like a time release type of Tegretol. You take the Trileptal fewer times a day than the Tegretol. I was told it is also suppose to make you less drowsy, which for me it was.

Talk to your doctor about things like, how long do I need to take this drug to figure out if it helps my pain? This drug is making me too tired, can I lower the dose? This drug is not working, should I increase the dose?

I hope that a drug or a surgery will help and that you don't have to live with TN the rest of your life. I wish you and your husband all the best in dealing with this.

Here are two links that may be of help to learning more:

Dr. Ronald Brisman's website at http://www.trigeminalneuralgia-ronaldbrismanmd.com/

A video by Dr. Michael Lim at http://www.hopkinsmedicine.org/neurology_neurosurgery/news/videos/l...

Don

18

Kassie, I can give you my personal experiences with Trileptal as I’m sure the drug affects everyone differently.

My TN began it 2008 and after many trial drugs, I settled on Trileptal. The side effects were drowsiness, slow brain function, lack of energy, dizziness. I am a big guy and keep myself very fit so it was depressing to me that I could not muster the energy needed to run or work out. However, after a few months my pain left and I weaned off the drug and returned to my normal life. The TN has recently returned and I’m back on the Trileptal with the same side effects. The pain remains but I’m either becoming accustomed to it or it’s getting better. It takes a while, but I think your body will accept the drug better as time goes on. Don’t give up on it early. It can work if given the chance.