Was recently diagnosed with Trigeminal Neuralgia

• By Jen-martha
• Reply 3758144
• January 30, 2013 at 11:15 pm
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Kayla, Keep on, keep strong. I will pray for your doctor's to help you through this difficult time. Jen-martha.

• By Ananane
• Reply 3759080
• January 31, 2013 at 9:38 am
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Have you started the tegretol? Is it helping? That can cause what I call "brain fog". I remember when I first started tegretol, it was like everything was in a fog, and I could stare without focusing. When I finally got off the drug it was like a cloud lifted in front of my eyes.

Please try to get yourself to a neurologist. Or even a pain clinic. Tegretol is a nasty drug and there are far better choices these days.

• By Ananane
• Reply 3759123
• January 31, 2013 at 9:47 am
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Here's a questionnaire from a university with a department of facial pain you and your doctors may find useful. Answer the questions, get the response, then print off the results for your doctor. Good luck!

https://neurosurgery.ohsu.edu/tgn.php

• By velsignet
• Reply 3759238
• January 31, 2013 at 10:20 am
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I can't believe you have gone with this for so long before you got a diagnose. A friend of mine had it and two days (got it one day, went to the doctor next evening and the day after she got an appointment for neurology) after she got it she was on homeopathic medication and went to a very special massage. The neurology gave her homeopathic medication due to pain medication doesn't work for nerves. That should be an easy test for the doctors to diagnose, but you need to be under treatment ASAP.
I hope the doctor will take care of you tomorrow. Trigeminal neuralgia is very painful and it needs to be taken seriously.
Good luck.

• By kdinsmore2
• Reply 3759738
• January 31, 2013 at 12:17 pm
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Hi, thanks for everyone's replies.
Ananane- I have started the tegretol, but I was noticing the brain fog and the eye problems before I started the medication, that is why I am assuming they are from the trigeminal neuralgia.
Last night and this morning was really bad- My right eye was hurting so bad and it was swollen almost shut. When my eye hurts it gives me a really bad headache and my neck hurts really bad and my ear along with them. It lasted through the night and until about noon today. I couldn't even get out of bed and could barely move.
I am so glad my doctors appointment is tomorrow, we need to start getting on some sort of plan because I can't take this.
It gets a little depressing when your 19 thinking, " is this how the rest of my life is going to be?" I guess that is why they call it the suicide disease. Also, something can definitely be said on the 'invisible illness' problem. Why does it have to be seen to be real?
Sometimes I feel like no one believes me, why would I fake something so horrible? HOW could I fake pain like that? I have school work to do, but instead I would like to sit in bed and cry and "pretend' to hurt for a couple hours.
Anyway, that's my rant. I just got out of bed so I guess i'm still a little hysterical.
Thanks for your replies!

• By Ananane
• Reply 3760077
• January 31, 2013 at 1:53 pm
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Thanks for coming back and responding. Your eye being swollen almost shut doesn't sound like TN (at least not from what I've read), but I'm no doctor, and I'm glad you're seeing one tomorrow.

I have a trigeminal neuropathy following a dental surgery. Did anything start your pain? Is the tegretol helping? It should help within a few days if it's going to help at all.

You're so right about being invisible. I broke my wrist last summer and wanted to hit everyone over the head with my cast when they asked about the pain. I said you could break both my arms and both my legs and it wouldn't compare to the pain in my face. I believe you and your pain. Don't stop until you get answers! Hang in there!

• By kdinsmore2
• Reply 3760211
• January 31, 2013 at 2:31 pm
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Well I've read that it can really effect the eye. I get pain on both sides of my face, not at the same time, and it seems like when I get it on my right side it really gets my eye. I've been to an optometrist and he didn't find anything wrong. The tegretol helps some, I wouldn't call it a lifesaver but it helps enough to be worth the side effects.

• By kdinsmore2
• Reply 3760374
• January 31, 2013 at 3:19 pm
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I think my eye being swollen shut was just the aftermath of the pain. My jaw and my ear was hurting as well, that would be the TN part. I'm not really sure whats going on with me, like you said, I need to see a neurologist for sure. Hopefully my doctor will give me a referral, unfortunately sometimes the waitlists here can be 8 months long. It all just depends. I will make sure to let everyone know what happens tomorrow at my appointment.

• By Ananane
• Reply 3760504
• January 31, 2013 at 3:55 pm
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8 months? Wow. I saw a neurologist the same day I was referred. I can't imagine waiting. Ask your doctor if gabapentin or some other drugs might help, like amitriptyline, nortriptyline, etc. Tegretol has nasty side effects---besides the brain fog, it made me unsteady on my feet, and increases bone loss. It's also extremely important not to get pregnant while taking the drug due to harm to the fetus. Good luck tomorrow.

• By kdinsmore2
• Reply 3760562
• January 31, 2013 at 4:11 pm
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Wow! The same day? I'm definitely hoping I don't have to wait 8 months but it wont be the same day lol. I am going to ask my doctor about different meds, the brain fog is really making it difficult to do school work. Also makes me dizzy and just really weak in general. Thanks for your support and I will post tomorrow.

Thanks
Kayla

• By Liiiveinhope
• Reply 3763649
• February 1, 2013 at 2:12 pm
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Kayla,
I'm in Edmonton. It took 3 months to see a neurologist here. Make sure you are referred to a university connected Dr if at all possible. They have the best training and are up to date on treatments.
Both sides of your face is so awful. I'm so sorry for you. I have delt with that for 14 years now. While you wait on the referral try to keep your face warm and avoid any cold air (AC in summer) or any breezes to touch your face.
Bending over, chewy foods, gum, stress, hugs (sorry about that one), and doing stuff with your hair all make things worse.
Like Ananane I've never heard of swollen eyes with TN. Is this something that's happened before?
Be frank with your Dr and profs. Let the doc know how MUCH pain you're in. Maybe they'll fast track you. Your profs need to know or they'll think you're being lazy. Print out an explanation of TN from the net and ask them if they would please read it. This would be a good thing to give family and your closest friends.
Keep us posted, I'll be praying for you,
Sharon

• By kdinsmore2
• Reply 3765144
• February 1, 2013 at 11:13 pm
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Hi guys,
I just wanted to give an update on my doctors appointment.
I would say overall it went well, I did a pain journal type thing and also did the questionnaire posted above and printed it out and brought them both into my doctor. He was very happy with that and asked me to continue the pain journal. He is scheduling me for an MRI and also a referral for the neurologist. We agreed that since the tegretol is giving me some relief I will stay the course on that for now, and he is giving me for tylenol 3's for breakthrough pain and I am looking into muscle relaxers since the baclofen did not work for me. ( I have extreme shoulder and neck pain and it greatly intensifies pain when I have it, not to mention it is just so uncomfortable and troubling that i need something to relax me)
Both the MRI and the neurologist shouldn't take too long, maybe a couple of weeks, so I am happy about that. I am going to get a bite guard because I clench my teeth at night and it is definitely part of the reason I am experiencing the TN pain.
I go back to see the doctor in two weeks- for a while I was very unsatisfied with the treatment I was getting because I felt he just wasn't listening to me. Things are getting better, he is finally taking me seriously and really trying to help me. Thank God!
Thank you for everyone's continued support and words of wisdom! Now in the meantime of the referrals I have to try to stay on track with school- it is very difficult going from always making A's to really struggling. I am usually a great student but these pills make me so groggy It is just so hard to concentrate. I applied for disability for my back problems. the TN, and depression and anxiety as a result of these things. I guess we will see how it goes!
I will keep everyone updated, again, thank you so much for your replies, it is nice having people out their that understand.
Kayla

• By Ananane
• Reply 3767297
• February 2, 2013 at 4:44 pm
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Thanks for coming back to let us know how things are going. Good to keep that pain journal going. Things I've found that make the pain worse are an electric toothbrush, routine dental care, cold air on my face, a cool breeze (even AC) across my face, a head cold, things that touch the side of my face, etc. See if you can figure out the triggers while you're waiting for your appointments. Wear scarves across your face when you're out in the cold! It sounds like you have a good start and a good attitude, so just trust yourself and become your own best advocate. Come back any time!

• By sslaird
• Reply 3773016
• February 4, 2013 at 2:46 pm
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I had trigeminal neuralgia start after a dental procedure, and I mean immediately after, in the chair. I suffered with it for a year before I finally had the crown length reset. It subsided almost immediately again. While I had it I was unable to eat anything harder than boiled egg. I lost my job because the pain was so bad. I did not realize what had happened to me until I came down with glossopharyngeal neuralgia recently. It, like your pain, affects the ear; I was seriously considering taking one of my sharps and inserting it into my ear to reduce the pressure I felt. I also have pain in my throat, tongue, neck, and shoulder. I started with a small dose of tegretol and got immediate releif but it has taken nearly double the amt to make the pain bearable. i have gotten used to the side effects and am much better at concentrating 3 months after starting them. I also take Lortab 10 at least 3 times per day for breakthrough pain. I am using a mouth guard and getting physical therapy for the neck and shoulder pain.
As you stated, this is a long-term diagnosis, but there has been a period of no symptoms for me, between the trigeminal and the glossopharyngeal. One of the doctors I saw for it actually had the disease himself and recommended continuing treatment for at least 3 months after symptoms are gone to allow the nerve ample heal time. At this point he is able to medicate with amytriptyline doses at night as needed and does not need any other medication.
I hope that your course goes well, and that we both end up as easily treated as he. In the meantime, PLEASE talk to your professors. There will be many challenges in your life; it is good to learn right now to talk to people and negotiate with those that you can and ask for exactly what you need. The worst that could happen would be that someone may say "no" and you are no worse off tan you started. Your studies are very important and being unable to attend at this moment is causing you undue stress. Try to work out a move that will allow heal time. Good luck!