New to TN and have a few questions

1

I was just dx 2 weeks ago with TN. I did not think much of the pain I would get while riding my motorcycle. It would be a quick sharp pain on the left side of my face by the jaw and go up to my ear and disapear beyond the ear. Then it started doing it while eating, yawning, talking and laughing. The pains come and go real fast and not a constant pain. I went to the Dr and she dx me with this. Put me on tegretol xr and titrated it up to where I can handle it. Now my questions are: 1.Am I going to have this for the rest of my life?

2. Does it really get as bad as some of the stories I have been reading on this site? 3. Is there is any way to slow it down, if I have to learn to live with it?

I have to admit this is a good site, but it scares the living **** out of me!! I don't mind some pain and working with it as long I know why I am having the pain. By the way I am not used to taking meds on a regular basis, so I am trying really hard to stick with this and my thyroid med regularly.

Thank you to anyone that can answer my questions, as I don't and can't give up my quality of life as I live on my own.

2

dear Vicky,

I can’t answer your questions.

Being recently diagnosed, I would strongly recommend seeking EXPERT OPINION(S) from healthcare SPECIALISTS, familiar with TN.

If Tegretol is working for you… : )

Anyone having a diagnosis of TN would have the living **** scared out of them!

Stay strong, bob

3

Bob is right, talk it over with experts, everyones pain is different, some do manage to get it under control with medication, I am not an expert on this condition but I know what pain I have and how it effects me, and it is horrible. Some people seem to have similar pain to me, and eating talking being out in the windy weather are all things that effect me. Though I have a constant ache just flaring up to pain when it wants to. Please read about Bob he is the most amazing guy. There are some wonderful people on this site, many who are in pain, but always prepared to go that extra mile and help. It does help to write your pain experiences down. Best of luck Margaret

4

I was diagnosed last summer. After one terrible episode that lasted a whole week, I was started on Tegretol. My neurologist had me taper off starting in September - per my request. So far, so good. I am hoping (against all odds) that I never have another episode. I’ve read that once you have it, it is always there but weeks, months or even years can pass before the TN flares up again. While I took Tegretol, I felt that I was unable to do my job. I kept forgetting things and could not think of the words that I wanted to say when I needed to say them.



Pehaps you will be one of the lucky ones for whom the pain leaves and doesn’t come back for a long time!



Best wishes,

Linda

5

Thanks to everyone on the info that you have given me. The Tegretol xr seem s to be working for now and I do hope that it can control it for a long time. What healthcare specialists are usually familiar with TN? I have talked to a couple of neuro Drs. since I do work in a hospital and see them occassionally on my unit. Otherwise I just my internal med Dr for it as a rule. And yes when the wind hits my face just so while I am out on my bike, omg hurts so bad I just want to park it.

6

Vicky,

Welcome to LWTN. Know that we are all hear for your support. Also remember that everyones body is different and that treatment and reactions will vary! And finally…TN is a VERY strange tempermental condition. It can come and go when it wants and be as intense as it wants. I wish we all had a magic ball to see the future, but we don’t so we can’t be sure of what next week will bring!

7

Hi Vicky, I so understand what you are going through. I was dx August of this year with TN… My pains was on the left hand side of my face and the pains was hitting me in my head and my eye. Some time it was a split second then there are times when the pains can last for a couple of minutes that was the worst. The dr started me out with nourton which they all are some type of anti-seizure med… But it didnt work for me… I went to another dr at Cleveland Clinic here in Cleveland Ohio He started me on carbamazepine (Tegretol®), which I think this is what you are taking, The med start working with 3 days, I went from having more than 30 attack to less than one & some days non at all. But you have to be careful with Tegretol. It can do damaged to your orgian. That what it did to me. I had a bad side effect. It was shutting down my lever and my red and white blood cell. I kept trying to tell the dr there was something wrong with me. What he should have done was give me a blood test each week, But it was almost a month from when he gave me the med, I end up in the hospital for 7 days They told me if I would have waited another week my lever would had been destory of if I had pnumonia it might have killed me becasue there was no blood cell to fight it off. While in the hospital I met another Neurological and she put me on Baclofen The only thing about this med is it an casue seziure., if stop taking it abruptly.
I have met people who had TN and found the right med & theya re pain fee, I med people who had to have the surgry & they are pain fee, But I am going to beleive and nothing us for you and I that we will find the right med & be back at our normal life. I have been off from work sine Aug becaue I cant not work. But I am going to be normal again, I have faith, The med is the worst, But one thing I heard some one said is try Holloistic Healing, meaning eat the right type of food and pray & medertate your way to a better heath. I can go on and on but let me stop for now, I will pray for you and we will work this through we will be one of the lucky one, and get through this. Thanks Diane

8

Thank you Diane for the information. I hope things go good for you also. I have my blood checked every 6 weeks for TSH and I am going to ask that they also do a CMP and BMP at the same time because of your information. I will be praying for you also. Happy Thanksgiving and I hope you get to enjoy some of the food. Vicky

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Vicky Lundgren said:
Thank you Diane for the information. I hope things go good for you also. I have my blood checked every 6 weeks for TSH and I am going to ask that they also do a CMP and BMP at the same time because of your information. I will be praying for you also. Happy Thanksgiving and I hope you get to enjoy some of the food. Vicky
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Thank you, Please keep me update.
Have a Great Thanksgigivng your self…
Diane


Vicky Lundgren said:

Thank you Diane for the information. I hope things go good for you also. I have my blood checked every 6 weeks for TSH and I am going to ask that they also do a CMP and BMP at the same time because of your information. I will be praying for you also. Happy Thanksgiving and I hope you get to enjoy some of the food. Vicky

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Hi Veronia, are you taking any med now? Did you every think about having the sergury? Do you still have pain attack? Have you been to the dentisit?You know it funny, How I have neet people who has had TN took med and never had an attacks in years. Then I meet people who has been dealing with this awful disorder for years. I am a Fashion Designer, My Life consisit of traveling, until I get this under controll I stay in the house. I am in Ohio and it is cold here now, If I have to go out side I bundle my self like the un-bomber. (lol) Yes I agree with you about eating the right foods, As I look past my life. My eating was bad I gain 100 Ibs with in 4 years my dr keep telling me I need to lose weight, and I yeal a lot at my husband, to the point I would give my self headach But I am taking your advice, I went an brought me a juicer, to make healthy green smootherand I am getting into Holloist Healing, Like you say it the mind body in soul. I do have a excellent support system, Some time they are tooo suppoted I will be more than happy to share my family with you(lol). If I fall asleep in the chair my husband panic (lol). I am a frighter, I am going to beat this thing. I am not sure where Redding is but if you are in Cleveland you and your son is more than welcome to share TG with us…My Family is a Hoot you will be laughting all day I hope I didnt bombard you with all these questions. Thank you

Diane
Veronica Yee said:

Hi Vicky,

I hope your pain can be conrolled or just disappear. Maybe start seeing foods that are good against your immune system and brain. I feel eating organic food and products in every aspect of today’s life is inportant. to substain your immune system. I feel if I have taken care of myself better comsumption wise, I may not have t his. What happens if there is a certain pesticide or chemical added or hormone treated food can cause this on people who do have a weak immune system? I don’t know what causes and your doctors don’t either and they will just pump you up with drugs. Hindsight, the only thing I did not do was to change my eating habits when I could eat of course. There are certain organic foods that can provide more nutrition to your brain.

I had my first pain on my right, upper lip to my ear (v2) nerve in 2000. Three things I wished, I would have seek out a healther, organic lifestyle, dump my BF and stay stress free as much as possile. One other thing, have a good support system. No one understood how painful this is and just pushed it as I was overreacting.

I went on Teterol too but I could not tolerate it, I forced myself to a higher dosages but I could not function. I became irriated, angry and confused all the time and went into isolation. Then, the med stopped working. I couldn’t hande higher dosage higher than what I was taking. I switched abd tried over a dozen, different types of seizure meds, and they all made me feel even worse. However, Neurotin had the less side effects but it did help only for a very short time, a couple momths, no matter what dosage I took.

I don’t know if it can go away without treatment, Like I said, I had it since 2000. For ME, it got worse during the years and leaving me my heath as it is now.

Now, I try to be positive and happy because the other side is too bleak. If you have not, read up on TN. Maybe find the right type of ‘brain’ food to eat. I know during those years of pain, my eating habits were so, so bad because I moved in with my ex BF who wished I cooked all the time. And if I did not, it was fast food, the worse thing for anyone, I suggest DO NOT EAT fast food. Maybe stay towards organics. I believe something in our society life style has a play to this disease. Also try not to get stress out, the pain can escalate. BAck in 2000, there were about a million people with it, now it seem like a lot more. My friend at work got it two years ago after being pregant.

Please try to stay positive in body, mind and spirit and that may help build your immune system and help the myelin in your brain from deteriorating. My ex-BF thinks I was because I got into a car accident when someone rear ended me but I don’t believe it. I think it came from a massage when I had a sport massage; the person pushed his thumbs up the back neck core of my skull too hard. That is when I first felt a slight pain on my right tooth and it WAS NOT a toothache. I don’t know actually if that is why it happened to me.

The worse for me, my BF left and we have a child together. Although both holidays fall on my week, he is complaining about not having him. Having no family, I hate the holidays. I have been invited to Redding for thanksgiving 4-5 hours from where I live and I would have to take a train. I don’t feel like going. I guess a Thanksgiving alone is not so bad, right, everyone. Am I the only one spending TG alone, I wonder? My family are fair weathered dyfunctinal type who do not know how to deal with people with chronic pain so it is best to pretend I don’t exist. I say something about suppot and none of them are talking to me. Oh well.
.
Quality of life, any kind of pain will affect that. The point is if you have a good support system. I did not, but I am sure you will!

I will pray that it will go away for you.

God Bless you and your family.

Roni

p.s. anyone in Martinez, CA with this disease?</div>

12

Hello Nancy, so nice to hear from you. I am going to a neurologist in less than 2 weeks and I hope to find more out from her. I had not heard about the viral infection part, but had thought about it because I had one in my left eye this past summer before all of this started. I talked to my doctor and a couple of others and they had all said no. So I am looking forward to seeing this other doctor. You have given me hope/I agree with you, that I feel so bad for alot of the people on here. I feel lucky to not be in as much pain as some of them.
Thank you so very much for your insight and I will let you know what I find out in the coming weeks.

13

Hi there I felt the same way you feel about taking sezuire med, I have TN, and I had no other choice to take med to conrtol the attack, the med will make you tired. Since I developed TN in Aug of this year, I have been on disability from my Job. This is my 3rd med I am on I am taking Befclon which cause you to have seziure, if I stop taking it abruptly! But it seem to control the attck, It has been 3 days and I have not had an attack. I am also in hollostic Healing. Good luck to you.. Let me know if I can help you with any thing. Take Care.. Diane
Nancy Price said:
Hi, Vicky I am also new to TN. Some days I stop and panic and think " sh*t am I going to have this the rest of my life"!!! I am not as bad as a lot of these folks and I feel so bad for them. I would go to a Neurologist and get a MRI. I go to the neurologist for seizure meds and my MD for pain medication. My MRI didn't show anything. Both Doctors have told me that you can get better. My doctor told me they think that in some cases people get TN from a viral infection. They both said it takes a while and that I need to take enough meds to not be in pain so the nerve can heal. I am having problems with that because they make me tired and I work in a paper mill. Wish you luck and pain free days.