30 years old, Newly diagnosed and very depressed...HELP

General General TN & GPN (Old Site)
1

Hi everyone,

My name is Liz and I am only 30 years old. I just got diagnosed this past friday and it has made me one of the saddest people around. I had a deep filling done 3 weeks ago and last week (2 weeks to the day of having the filling done) a throbbing pain on the right side of my face / jaw awoke me from a dead sleep. It waxed and waned over the next 3 days but on friday, it became constant. I am horrified to be one of the people to get this. It is supposed to be so rare and I ask "why me, God?" I am a physical therapist, group exercise instructor, a mom to 1 and 3 year olds, and a wife. How did this happen? I have been scouring the internet for information which can be good and bad but I had no where else to turn. I want to know a few things:

How can I cope with this?

Can I ever be happy again?

Do the meds actually help significantly? Or do they make you feel so bad you can't even take care of your kids, work, exercise, etc?

Can atypical TN be treated very effectively? With meds? With surgery?

Do MRI's always show whether or not a vessel is wrapped around the nerve?

Will they still do surgery even with a neg MRI?

Do you always have to try meds first?

How long should you wait prior to opting for surgery? Is it ever "too late"?

How common is it to get it on both sides of the face b/c that is my next worry?

I am only 30...does this mean there's a good chance I have MS as well? I don't have other symptoms I should add.

I REALLY NEED SOME ATYPICAL TN SUCCESS STORIES RIGHT NOW B/C I HAVE NOT FOUND MANY OF THOSE ONLINE.

Somebody please help :(

Thank you all,

God Bless you,


Liz

2

Hi Liz, welcome ! Sorry you have to be here, but it’s great to have a place for support.
I can’t offer many answers to your questions, but I can tell you that for me meds worked immediately to relieve the pain when I was first dx. ( i was around your age at dx , with 2 young daughters at the time )
I had to play with the dose with my doctor, and I did feel extremely tired and had some side effects the first 10 days. After that it was smooth sailing for a few months I was then able to wean off the meds completely about 7 mths after it begun. I was in remission for 8 yrs, until it came back 2 yrs ago.
Unfortunately my TN isn’t responding well to the meds and is getting worse. Just means I have to reevaluate what to do next, more meds or surgical options.
I have bilateral TN, never do I have the pain on both sides at once, it starts out on my right side for weeks/months and then jumps to the other side . So currently all my breakthrough pain is on my left.
I was tested for MS, due to my young age at the time and I had a few other neurological symptoms, but so far no signs of MS in ten yrs.
Also most mris do not show a vessel or artery on the nerve, you need a certain kind of MRI to show that, forgive me for not remembering what it’s called.

Everyone’s course with TN is different. Find a doctor /neurologist that you work well with and research! There are lots of helpful links ontop of the page as well as these forums’ history.
Not many doctors are well schooled in TN so you must inform yourself and be your own advocate . That being said pain management is key, not easy, but you must try and find what works for you.

I would print off your questions and bring them to your next appointment.
Don’t despair, you can do this, I’m sorry you have too, but you can get through, one day at a time.
Take care!

3

I don't know if I am imagining it or if it is real because I am so emotionally disrought about the potential of getting this on the other side. I am feeling like I might have a "pressure" sensation on the left side starting now and I am so frightened. Is it difficult to treat bilateral symptoms? How common is this?

Liz

4

Hi Liz, yes, its a pretty cruddy hand of cards to be dealt. I took comfort knowing that I was not the only person on the planet at our age, with young kids, to have these challenges. The only thing that I know for a fact, is that each story is unique, each doctor has different outlooks. It is vital that you become your own advocate! My meds helped alot in the beginning. Cabamezapine, baclofen, and vit B-1. It’s been 2 yrs, the pain comes and goes, severe, or mild, always changing. I am hoping to go off the meds, am tired of the side effects, but, I am not sure that I want to try surgery. Give yourself some time to grieve over the diagnosis, then realize that we have it in us to be stronger than this little demon! If this is the most severe medical problem that I am going to have, I’ll take it. There are much more heartbreaking stories out there. Good luck to you! Warm regards, tiffanie tagner

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Liz, this is a good place to be with supportive people and a lot of information. Through my own reading, I think I have type two or atypical TN. I was diagnosed by a dentist, and I had never heard of TN before, so the learning curve was huge.


I am taking Tegretol, which I was given a fairly open-ended prescription for from my family practitioner, and have decided upon an amount that works to keep the rocket train pain from happening. For the constant pain I have been rotating aspirin, tylenol, aleve and ibuprofen. Fortunately, this has worked most of the time, even if I take two overlapping meds. I was diagnosed July 11, so am just a beginner, but finally I have a neurologist appointment on Friday. maybe I will learn some more.

For suggestions, I would take it one day at a time. I find if I get very stressed I have worse pain, which would make sense because of rising blood pressure, and pressure on the nerve. When I have a busy day I try to take the next day slower. And I am not making any extra commitments right now, until I understand what I am able to do an maintain my comfort level. I have been avoiding bumpy roads and thumping exercises that jar my head and trigger pain. You will figure out what works for you. I wish you the best possible outcome. Don't lose hope.

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I am so sorry to to hear when someone else finds themselves in this situation. Especially with small children to raise. You're going to become an expert very quickly on your own body and what your levels of operation are at varied stages of pain. You're going to find out how strong you are. Don't settle for doctors/neuros who don't understand TN; the more you read the postings on this board, the less time you'll waste in fear and despair.

My daughter is grown now, but I do still have to work full-time so I have to endure a lot of pain to avoid being stupefied by meds during the day. I take most of my meds at night. But with small kids, you never have time off, that part is going to be difficult. Ask for help a lot. The more you get worn out or stressed, the more TN will raise the ante.

It will be hard for your friends and family to understand also, because even though you feel like a great white is chomping on your face, they can't see it. Get them as educated as you can as well as yourself, because understanding brings compassion and this is a tough thing to explain. They might not understand how someone can look perfectly fine yet be experiencing a high level of pain, or that the meds make you feel like a zombie. So the more they learn about it, the more apt they will be to pitch in and help you through the worst days & nights.

Try not to allow yourself to feel like a victim. This is almost impossible. But if you allow it, you'll be asking yourself every single day why it happened to you, why do you deserve this, etc. It's not a punishment, it's nerve damage and it happens. It's a huge game changer, but try to be the best TN'er you can be. When you need support or someone to understand you, post here. Share what you're going through with us. We might not be able to make you feel better physically, but it's a great relief to communicate with people who are experiencing something this nasty and painful.

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Do the meds actually help significantly? Or do they make you feel so bad you can't even take care of your kids, work, exercise, etc?

1. Usually they do help the horrible pain. It takes awhile to get used to them but they are not easy, but either is pain. Each person is different.

Can atypical TN be treated very effectively? With meds? With surgery?

2. It seems that atypical TN is harder to treat. No one really knows why. Both with meds and surgery.

Do MRI's always show whether or not a vessel is wrapped around the nerve?

3. No often times they don't see anything on the MRI. They also do an MRI to see if there are signs of brain tumors or MS.

Will they still do surgery even with a neg MRI?

4. Yes. Most often they won't see anything on the MRI and then the surgeon will see the artery on the nerve when they go in. If, on the rare times that they don't see anything touching the nerve they will look for MS again.

Do you always have to try meds first?

5. Yes. Though I don't know why. Perhaps one reason is if the meds help then it's TN. Usually a neurosurgeon will want you to try more than one med before trying surgery

How long should you wait prior to opting for surgery? Is it ever "too late"?

6. From what I read, surgery works best within the first 7 years of diagnosis, though it is never too late. Unless you have other health issues that prevent you from having surgery. The younger you are the better it works, supposedly.

How common is it to get it on both sides of the face b/c that is my next worry?

7. It is uncommon, though it seems to be happening more and more. It's more likely to start to affect more areas on the original TN side.

I am only 30...does this mean there's a good chance I have MS as well? I don't have other symptoms I should add.

8. Unknown, though they will check you for it because of your age.

Positives. Surgery tends to help more often in younger patients. And seems to last longer as well. Surgery at your age would be safer than gamma knife or other non med treatments.

I am on trileptal and on a fairly high dose but the pain is gone. It slows down all the nerve impulses in my body and I feel like an idiot. For me, I can't drive and can no longer read long passages. It does mess with your life. I get dizzy, nauseous, and weird moments of anger. But many people take a lower dose and deal with a little pain. It becomes a trade off. I know that I will be having surgery when I can get a neurosurgeon will do it. Surgery doesn't always work but I'm willing to risk it. But I've only been on one drug so I have to wait.

You are not the youngest person here that has been diagnosed. One woman's 11 year old daughter was diagnosed recently and that poor girl has to go through jr. high and high school while taking these stupid meds.

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Hi…I can answer the exercise question…I have type 2 and I have been running and training very hard. I ran and finished the 5 mile race to save face in July. It was a very rewarding day for me!! I beat the odds that say people with TN can’t run because of the pain. I ran and I am still running. I use running as a fighting strategy…I wait for the best part of my day then I hit the trail!! During my run I feel awesome!! And strong and normal!! Sometimes the pain is worse afterwards but, sometimes better!! Regardless I won over pain that day!!! I didn’t let it keep me down!!! Keep fighting !! I was diagnosed 5 years ago when I was 36…its been a battle!!!

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tkal gave you very good answers to your questions.

The good news is that you are asking all the right questions very early on. Another person suggested you take these questions with you to your appt. That is a good idea. Your doc should know that you want answers to these questions - that you are thinking beyond this one appt, that you are thinking of your whole treatment plan.

Don't worry about the things you can't control. MS, TN on both sides - your doc will do an MRI to rule out MS. TN on both sides - not typical, if you aren't experiencing it, don't worry about it.

The meds before surgery - yes, go that route. Surgery is not a sure thing and you might not need a high dose to handle the TN, so the drugs may be a lot less invasive than the surgery - that's why that option gets chosen first.

Aptypical: If that's what you have, many people with Atypical seem to do better on other drug regimes than using the normal go-to drug, Tegretol (carbamezapine). Ask questions on this site, you will find out what other people take. I'm Atypical, and I find Nortryptiline works better. If your Doc starts you out on Tegretol give it a shot, it might work for you.

Don't be afraid to keep asking questions on here. You will get a lot of info.

Take Care, Elaine

10

Hi there - a MUST read is the book "Striking Back" by Dr. Ken Casey. 100+ treatments, remedies, pain reductions -- this is a TN guru

I started keeping a word document on my computer of everything that applied to me - my questions and answers from here too.

For instant immediate relief - I used topical cream/patches Rx lidocaine from local neurologist -sometimes meds can take a couple of weeks to work.

You can also get more info if you google TN Association. -- But HERE is where I continue to come since a successful surgery by abovementioned doctor.

I don't know if it was because of insurance, but I did try meds 1st. Trileptal is one of the 1st things they try - but it made me so I could not go on job interviews - caused deep depression - stupidity - so one year after a horrid oral surgeon visit that changed my life - I had the MVD surgery.

Flew from MO to MI to see the doctor that learned the frontline procedure from the inventor of it. Lucky to have great insurance. Saved my sanity.

You have already gotten such great answers here! If you have TN - it will always be there - you just go in and out of remission if under- or un treated. Sometimes you have to have the MVD surgery twice --- I would do it again in a heartbeat - because the sooner you do it - the higher the odds of success. IF you choose any other procedures - they will LOWER success chance of MVD surgery.

Welcome - and learn alllllll you can!!!!! I hope there is a doctor near you than has TN patients - there is a doctor's tab above.

As for your feelings -

I wrote a posting about the depression that comes with this - as I am a grief counselor in real life now. Here is the link:

http://www.livingwithtn.org/forum/topics/an-important-reminder-for-...

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Hi Liz-

I know how scary it is to be first diagnosed, I had to have my neuro write it down as I had never heard of TN. I do have atypical t.n. - first diagnosed in May 2010 after 5 months of frustration of going to many docs to find out what was wrong. I can tell you I waited until Dec. 2011 to have a MVD - and I hate to tell you that it didn't work and now have far more pain, both t.n. and "brain pain".

I can honestly say I could not imagine having little ones around - you will need your group of family/friends to be there to help. The meds I have tried are many with carbutrol giving me the worst side effects and had to go off, then lyrica, cymbalta, trileptal - now on neurontin 1800 mg and oxycontin and vicodin for pain, ellavil at night along with clonzepam. I really think the best idea is trying meds at first to see what works the best for you and I would think your doc would agree.

And, happiness, was just crying yesterday about that - but there are truly good moments that happen. We just have to make them happen - I practice yoga and have not been able to for the past few months due to all the meds, but don't you worry I will be back at it! So, with you being a "fit mom" there will be days that you can't work out but then there will be days that you can/ and with a 1 and 3 yr old there is enough work out just keeping up with your darlings. I truly feel for you - I always cuss out my t.n. when I get sharp pains and it seems to help sometime :)

And, no it does not lead to MS as far as my docs told me. After yoga once my foot was tingling and I thought for sure, omg its ms - and my doc said not too worry, he told me that by my MRI he could tell.

And - yes the meds do make you tired but as long as they help with the pain, you have to pick the lesser of 2 evils.

I have had to file for disability - but am much older than you ok, 58 and I don't say that often, and it took the wind out of my sails. I used to work 3 jobs and am now working @8 - 10 hrs a week. But this is me. all cases are different and you may be able to find something new from your docs. I live in MI -and if I can help you in any way I sure will. Its that support that really helps.

And, finally,one more time- yes you can be happy again - its within yourself that it begins!! And watching your babies grow - and trust me, it goes quickly, is enough to bring a smile to your face. My 6'5" baby will be 25 next week and it seems like I just took him to kindergarten.

I hope some of this rambling helped you - take care my dear - and know that we are here and you are not alone!!

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you are so funny - don't shoot the doc then you will be in real trouble! - thanks for the laugh-



shindig said:

Welcome to the club. It's awful. The closest thing to relief I've found yet is a prescription for neurontin.It seemed to work the most when I first started though, at that point it gave 95% relieve, now probably 75% or less.

I was 27 when my pain started, 6'4 and 160 lbs, outdoorsy and active. Took more than 8 months to get on the right track with a neurologist.

I had an MRI a month ago, and was worried it wouldn't show anything, but it found a lima bean on my trigeminal nerve which currently is called "Cavernous sinus syndrome". Now they're trying to find out the cause, I had a spinal tap (lumbar puncture) last week. There are so many things it can be. In my case, having found something, there are then a thousand different things that can cause the lima bean.

Many people end up finding nothing on the MRI though, and that has to be extremely frustrating. Even with a lima bean the doctor isn't sympathetic to the pain. I fantasize about shooting him in the leg and offing myself. It hurts so much.

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No firearms, please. Yoga Momma, you crack me up!!! I saw a neurologist, finally! He is scheduling an MRI.

We need to encourage each other. I am so glad to have online friends like you guys! I have faith that as we move forward in our diagnosis, ALL OF US - we will find relief.

Don't give up.

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like you have i still have many questions and i have been dealing with this for almost 3 years the dr never told me it would come back and that it may be worse every time or that he meds may stop working i still have not found a neurologist that will listen to me i am also young 35 and have to small children I am scared too sometimes I feel I am in a nightmare and will wake up normal again..i keep telling myself to be strong for my kids..I also work i am a teacher but not sure if i can continue to work and take care of family praying for u and everyone that has this horrible disorder

Andria

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I was literally just talking to my husband about this: why don't neurologists just listen? That's it: listen. I would've been diagnosed SO much sooner and maybe, just maybe, life would be a little easier. I'm also on the younger side, 30, and I have no life. I had to go on disability a few years ago because of the pain and the side-effects of the meds. I'm in the medical field and it wasn't safe anymore for me to be around patients. (To be honest, I was an MRI Tech. I'm sure you've all dealt with one and wouldn't like it to be a fellow TN sufferer on Tegretol and pain meds with all the responsibilities and things technologists have to do.) I don't go out. I don't have a family of my own. The point is, my neurologist wasn't very helpful and I feel a lot of time was wasted. I was the one that had to do my research and bring things up to him. I'm now looking into MVD and I just pray I find a competent neurosurgeon (since once again it's all up to me since my Dr didn't know who to recommend).

BTW: I have such big respect for all you moms and dads here. I don't know how you guys do it. You are inspiring.

16

That's just ridiculous and crazy and...sad. We truly have to be our own advocates and take matters into our own hands. It's up to us to make sure things are done correctly and thoroughly.

But it's really hard to do when it feels like our head is being electrocuted!