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Living With Facial Pain

Hi! Nice to meet you all :)


#1

Hi everyone! My name is Gisela, I’m from Buenos Aires (Argentina) I am 29 years old and I’ve been living with this pain undiagnosed for FOUR years, until a few weeks ago when I finally went to see a neurologist and he diagnosed me with TN. He prescripted Tegretol 300mg/day (100mg 3 times a day), he said “It’s a small dose for now, lets see how you take it”. Well… i WAS feeling GREAT for the first week (i was so happy and feeling so good you wouldn’t imagine), but now its coming back :(. I am veeeery new to this medication thing so I would love to take advice from you. Also, I would love meeting people who ACTUALLY understand what I’m going through. People who don’t suffer with TN have no idea and tend to minimize. I’ve heard everything from “oh its JUST face pain” to “if you’re sitting there maybe it does not hurt you very much” or “it cannot be much worse than my insert here any body part pain”.
PS: Sorry about my poor english, I hope you can understand me :).


#2

Welcome Gisela, You are on a site that has many members that know what you are going through. I hope you can find many answers to questions you might have.
Scott


#3

Wow! Four years is a long time. I’ve had mine for about 32 months now and was diagnosed at about 7 months into it. I know sometimes it got out of control for me causing lots of pain at different parts of the day. I’m using the same medication with the same diagnosis as you. I wouldn’t say I eliminated it but it is just much more controlled. The only time it seams to get out of control is when I miss a dose… or two over a couple of days. Consistency will deliver slight discomfort in the morning with period of brief irritation throughout the day. That is a huge relief than what I experienced. I understand. This is the worst pain I have ever had so I kinda take what i can get.

I hope this helps you in anyway. I keep looking for answers. I just want it to go away for good. I’m sure you feel the same way. There are a few vitamins that might be able to help as well:

  • B12
  • Folic Acid
  • B1
  • L- Carnitine
  • R-Alpha Lipoic Acid

I


#4

Thanks for your warm welcome. I will take my time to read everyone’s experience.


#5

Thank you very much. I completely agree with you.
I haven’t miss a dose yet but I know I will eventually, lol. My worse pain is when I’m at work (thankfully I work at an office, and I’m quite at peace most of the day).
I have an appointment with my neurologist two weeks from now to see if my meds are working and make an adjustment. He’s an epilepsy specialist so I really don’t know yet if that’s good or bad but if it doesn’t work for me I’ll just make an appointment with someone else.
When my pain started and I wasn’t sure of what I had, I used to take a pill that has b1, b6 and b12 and I felt quite relieved. I haven’t try any of the other ones you name but I could.
Thank you a lot again!


#6

Nice to meet you and sorry to hear of your struggle. Let the medication take time and see what happens its good that you found a caring neurologist. There are lots of resources on this forum and lots of good people.


#7

Thanks, nice to meet you :). This condition has days, you know? Days when you feel great and days when you wonder why the meds aren’t working at all and you just can’t get out of bed. I hope I can make the time to read and learn from all of you guys! It’s very nice to see how welcoming and kind you all have been.
Have a nice friday!


#8

Gisela , your dosage is less than mine. I was on two 200mg a day and was told to take three when pain grew worse. My neurologist still thinks that is not an excessive dosage. Hope things get better for you. For me my problem is from a brain tumor pressing on my TN. The tumor is inoperable so I had a rhyzotomy If it gets to bad again. I’ll have one again I’m sure. Hope you’ll get more answers when you see your neurologist again. Gloria


#9

Oh Gloria, I’m so sorry to read that. I reeeeaaaally hope you feel and get better, you’re a warrior so I know you will overcome this.
How are you dealing with pain with 400mg/day? Is it better?
Thanks for your warm welcome and I hope you encounter better days.


#10

Dear Gisela,
I am sorry that you have TN. It is a sorry thing to have. I myself went to 4 different doctors before I was properly diagnosed, and put on tegretol. This drug is a life-line for me! However, it does not cure TN.
I had several days of terrible nausea when I first started. I had to break each 200mg. capsule in ihalf, and take with food until I was able to tolererate a whole dosage at once. I still do better if I take it with food.
I think that it is rare for us with TN to be completely pain free. Mostly pain-free, and that’s great.
TN pain comes and goes. You can be almost pain free for a long time, and then it strikes again with a vengeance. That, I understand, is one of the things that is so frustrating about it.
I am allowed to increase my dosage as needed, and lessen it as needed. I am sure that you already know of some of the common symptoms, sleepiness, dizziness, etc. If you are allowed to adjust your dosage to a lower level sometimes, do not stop taking it completely, as your doctor could explain.
I am in my 10th year of TN. I still find it easier if I take it with food. I find that for me, it takes 45 minutes to take effect.
I would love to write to you in Spanish on e-mail, if possible. Mine is not so great, but my husband is a spanish teacher. He can help me.
You will be in my prayers tonight.
Kudasai


#11

Hello Kudasai. So I see you are a very experimented person in this TN thing. TEN years is a long time, you’re definitely a fighter and a tough warrior and you have all my admiration.
My neurologist didn’t give me the liberty to adjust my dosage yet, I am very new to this. I try to take mine with food and the only side effect I have found so far is sleepiness.
I would LOVE for you to write me an e-mail. I will message you my address.
Thank you so much!


#12

Hi!
It’s always bittersweet to meet someone who has been diagnosed with any type of Facial Pain, TN, and the like.
However, you have an army of Warriors who have walked in your shoes, and understand what you’ve been going through.
I am classic compression, Type 1, right side, for about 9 years.
Tegratol, or Carbamazepine and I are old friends… doses from 200 - 1400 mg.
Some things I’ve learn d along the way…
:heavy_check_mark:️ Dr’s will use Tegratol or Gabapenten to help diagnose if, in fact true TN is the diagnosis, or if there is something else going on.
:heavy_check_mark:️ Usually there are MRI tests to clear out tumors, MS, or other issues that could be impacting the nerve.
:heavy_check_mark:️ Usually it takes a couple weeks for Tegratol to kick in. Many times a ramping up of dose is required to find your “sweet spot”
:heavy_check_mark:️ Complimentary Meds also serve a good purpose in aiding the effectiveness. Baclofen, Imipramine are what Dr’s prescribed to me in low doses. These two meds don’t do anything on their own, but chemically, they really kickbup the effectiveness of the Tegratol.
:heavy_check_mark:️ I had an MVD surgery, and feel it is the best option for us. It is the only procedure that saves the nerve instead of damaging it further. It gave me 14 months of perfection, sadly, the pain Demon returned. I would do it again if I could.
:heavy_check_mark:️ Find the book: Striking Back, the Handbook for Trigeminal Neuralgia. Co-authored by Dr. Ken Casey. It helps put this into perspective for us and our friends/ family.
:heavy_check_mark:️ The newest med I have been prescribed is Provigil- it is a stimulant, it counteracts the usual “brain fog” and lethargic feelings connected to Tegratol. It has given me my life back!!! :+1:t2:

I wish you all the best on this journey, you will find out things you never knew about yourself, you are a strong, amazing, patient Warrior!!! Don’t let this Demon get you down!!

Feel free to msg me.
Take care of yourself, be your loudest, most effective advocate!
Tiffanie


#13

Tiffanie, I was quite impressed with your dialogue. I intend getting the book you recommended. My previous neurologist did mention the medication you quoted. Since my rhizotomy I have only had gabapent and tegretol. My pain is gradually returning and tegretol again. I think what you have said could have really help Gisela and a lot others. Good luck fellow members. Gloria


#14

Nice to meet you too!

You are not alone. If the Tegretol doesn’t work, you can try Trilptal. It is a cousin of Tegretol that has less side effects for some people. For me, the Tegretol didn’t work that much and made me feel dizzy a lot. Like being drunk but not fun at all. Also, you cannot drink with these meds, so avoid alcohol.

I’m 32 years old, and I take Trilptal, Neurontin, and Cymbalta every day, and then I take Oxycodone and Morphine most mornings because when I sleep I invariably toss and turn and aggravate my bad side. But it’s like you said, some days are diamonds, some days are stone, when the TN just won’t leave us alone (nice John Denver quote there haha).

For me, a great things has also been acceptance of my pain. You cannot try to push it away. When it is there, it is there, and that’s just the way it is. Many friends can’t understand this, but sometimes you can’t just do the things you used to do. Such is life. Meditate when you can, do some yoga too. I love the book, “Full Catastrophe Living” by John Kabat-Zinn, which helps people with chronic pain learn to live with it. He has some guided meditations on Youtube too (https://www.youtube.com/watch?v=u4gZgnCy5ew). He has shorter versions too. They have been a great source of comfort and peace for me.

Lastly, while an epilepsy doctor isn’t a TN doctor, the conditions are very similar, so they are better than nothing until you can find a chance to see another specialist.

So welcome to our pain family, and we wish you peace.


#15

Hello Tiffanie, thanks for taking the time to write me all those tips, they’re very helpful.
I will try to get the book, via Amazon I guess, seems like a great tool to try and help our families and friends understand about this invisible disease.
I’ve been reading about MVD surgery, it scares the hell out of me, but I think I could really consider it if the pain was unbeareable.
About my diagnosis, my doctor asked me about my pain and then he examined me like from my chest up, making a lot of questions and touching -I guess- important spots. I didn’t have an MRI or anything like that. He just looked at me and diagnosed me. I explained to him that everything started after a visit to the dentist, that’s why i think he believes there’s no tumor or MS, just a dental malpractice.
Ooohh, i wrote a lot, lol.
Thanks a lot, you’ve been really kind. I will take note of all this (do you guys have a “TN Diary”? i read about that and I think it could be helpful).
Have a great, pain free day!


#16

Hello Willimus. I’m glad to know I’m not alone, believe me I feel like that because people around me seem to think sometimes I’m just crazy or exaggerating, it’s so frustrating. I don’t blame them, though.
I read about Trileptal (and a thousand other meds), it is like 10 times more expensive than Tegretol. So this decease is super painful AND will get me broke too. I am afraid i will eventually have to work only to pay for my medication. My health insurance covers me only 40% of the cost of meds.
I havent accepted my pain yet. Like, i cannot just accept i will have to live with this my entire life. I know i will but i cant seem to “be ok” with it. Just the thought of it makes me crazy. I will have to work on it. Maybe therapy could help? I dont know.
I will try meditation, i thought about it. If i doesnt work it cant hurt either, so its ok to try.
The reason my neurologist is not a TN specialist is because i dont think there’s any specialists here. I feel there’s a lot of ignorance about TN in my country. Most of people dont have any idea of this condition and i couldnt find a specialized doctor, i will keep on looking though.
Thank you so much for taking the time to welcome me and giving me all those helpful tips. Have a great day!


#17

Trileptal has a generic, OXCARBAZEPINE. I don’t know pricing in your country but in America there are also coupons available for the generic.


#18

Thanks Azurelle. Usually, generics here are crap (sorry my language!). They are much more cheap than the “brand meds” but they’re terrible. For example my neuro prescribed me Tegretol specifically and he told me to get that, no other. Actually Tegretol here is the most expensive carbamazepine (there’s not a lot to choose from anyway). I guess if he prescribes me Trileptal, im stuck with the name brand :frowning:


#19

I’m not going to tell you your pain will get better. It might, or it might not. I’ve had two surgeries, and it persists. It is what it is. Of course that doesn’t mean we should stop trying to improve our condition, find the right combination of medicine (because that takes a lot of trial and error), and see the best doctors for us. But it means we don’t attach our emotional and mental and spiritual well-being to those things.

I really recommend meditation and the Kabat-Zinn book (I bet you can even torrent it). I think it is the perfect guide to anyone living with any type of chronic pain. Pushing our pain away only makes it worse for me. Living in the moment, whether it is painful or pain free, I find to be good for me.

So keep persevering and know the struggle is real but it doesn’t have to define your entire life.

And I hope I don’t sound like an arrogant ass hole. All of these things took me years to learn and take every single damn bolt of pain to remember.


#20

XGisela, I have had TN two times with two surgeries. Tegritol is a good choice. It works faster which helps with the pain. But my experience was that the pain increased, I had to take more tegritol and at a future time I could no longer tolerate the medication. I hope you can be controlled by the medication. It is a horrible condition to have and I can only wish you well. You can learn a lot from this site. Alll my best Bunny