Still not sure where I belong

General General TN & GPN (Old Site)
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I was diagnosed with TN (the doctor didn't go into specifics I was the one who did the research not her) about 6 months ago after the pain got so bad that I couldn't even sleep anymore and was put on Neurontin and motrin 800 luckily for me that seemed to control my pain, although I had to double up on the Motrin 800 to get it to work properly to where I'm now taking over 2400 mg of Motrin a day. But it works for the pain. After a while of dealing with weeks of random attacks and then weeks of constant pain, it just stopped. It eased for a few months and I went off the Neurontin because I despise the side effects while I'm on it. I thought perhaps I got lucky and somehow it just went away so I stopped coming on here, I thought perhaps both I and the doctors (the urgent care doctor and my GP both agreed on this diagnosis) were wrong. So I stopped coming on here, even though I hadn't been on long.

I felt guilty that my pain stopped and most people on here are hurting all the time and I also felt bad that I got diagnosed so fast. I've heard horror stories of people not being diagnosed for years and years and going through complete misery. So that kind of made me feel like I didn't belong on here. But then the pain came back, about a month ago. It started up again and now I'm back to taking way more Motrin 800''s than I should and I'm back on Neurontin and I'm also back to being confused. I've done my research on this and I seem to fit TN as well as ATN it's almost a mixture but at the same time there are some things that I don't experience, so I don't know quite where I fit. I was never told specifics like I said, just that I had TN and that I needed meds for it. So I don't quite know where I fit and I'm not sure why the pain just suddenly stopped for a while and then started up again. And it seemed to come back with a vengeance. The attacks come quicker now, a lot of times with no warning. And if I do have a slight indication such as the intense pressure in my eye and temple and the shooting pain that comes with it, I don'[t have time to react and get my meds in me fast enough.

So it's rather confusing for me to know where I fit and if I even belong on this site. But all I know is that the pain is back and while I'm lucky that the meds do control the pain I have to make sure that I always have something on me. I carry my prescription of Motrin with me no matter where I go because I can't leave it because the attacks are so unpredictable. And when it does hit all I can do is sit and try not to cry. It's happened many times where I've been in public when the pain hit and I sat in a resturaunt or a store and rocked back and forth because that's all I can do. So I have to at all times make sure that I have access to the mes at all times. And how many employers are going to let you walk around with Motrin in your pocket? I mean I'm lucky enough to have it not effect my life TOO much, I did have to drop out of night school before the diagnosis because it was so bad that I was missing almost every night. But for the most part I'm a very lucky person.

So while I know what I have I'm still not sure what the details of it are. Is it just TN or ATN. No one has explained this to me, I don't even think they're sure. And I have to stick to my own research because no one can tell me. Oh and let me tell you my doctor was not pleased when she found out I was doing my own research on this, she told me it would just put ideas into my head. Maybe if she would help me figure out what exactly is going on with this then I wouldn't have to do the research.

I think that's about all I have to say, this is more of a rant I guess. Maybe hoping for a little insight. But I think I might stick around, even though I do feel guilty that I've had it so easy compared to a lot of the stories I've seen. Either way if anyone read this I appreciate it haha. I also apologize for my.....lack of being able to convey myself properly, sadly Neurontin throws me into a fog and I can't think clearly or even socialize properly haha, so please excuse me for that and for my rambling.

Anyway, I hope everyone has lovely day, night, afternoon, evening, where ever you are.

I'll just be happy if any of this even makes sense. = )

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Hello Im glad your pain is not as bad as others and Im sure everybody else is happy for you too Im sure alot of people here could benefit from your sucess if you stuck around just to support others and give your advice on what helps you It could help someone else in need But we would understand If you did not want to stay I realise it can be depressing at times. I went from getting on everyday to a couple times a week because I have had relief from my type 2 pain with nortriptyline a tryclic anti depressent although Im not pain free Im not bedridden like I was before thank goodness but I am always scared Im gona go back to that. And always looking for more relief. All these people are soo nice and alot I feel are my friends Thanks for posting!!

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Please fire your doctor. You need a neurologist who has many TN patients. You are doing yourself a dis-service by keeping one that is not supportive. 99.9% of our docs have not had TN -

Go to google Images - type in facial pain , type in trigeminal neuralgia - it's a visual for anybody in your life to print or see on a screen

If you haven't already - please get the book "Striking Back" by Dr. Ken Casey -- mostly the only thing that has changed since it was published is that now MVD operation statistics are higher in success!

Ask your GP / Dentist / whatever doctor to call you in some lidocaine cream or patches for your face - miracle for many - works instantly if it is going to work on you ----- and because from my research you are on too much motrin.

Lastly for now, TN is progressive - eventually for many the meds stop working -- consider finding out if you are a candidate for MVD --- if you do any other types of nerve damaging procedures first -- MVD will not help much then. Highest success rate is within 3 years of onset. Even MVD can wear off after months or years.

I had mine by a great TN surgeon (the one who wrote the book above) - flew from MO to MI because he is one of THE best and corresponds by email himself to do pre-surgery planning and consulting for free.

Sorry, I'm still enjoying 98% pain relief since 2010and try to advocate people to be pro active in their wellness--- its hard that we are only 12 in 100,000!

keep posting!!!

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There is no attendance criteria for members here. If you want us we are here, when you don’t, we are still here if your circumstances change.
If your Dr does not like you researching your TN, she should do it for you. Since when could someone imagine a rare illness very few of us have ever heard of until we actually develop it?
No wonder you feel like a rant, I would too!
I hope for better care for you.

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Don’t let your doctor put you off. Patients not doing their research is the old model of medicine.
I have GPN, ATN and HFS but first presented with deep piercing ear pain so was treated for ear/sinus infection for a long time. I was the one who found the diagnosis of GPN and my doctor has never heard of it but she checked it out and agreed. Sent me to a neurologist. He refuted and said it was all fibromyalgia. My doctor and I didn’t agree. A few months later she sent me to another neurologist. Te second diagnosed ATN but she is young and I think didn’t want to go over the head of the first neurologist about the GPN. But she sent me for MRI which confirmed compression. It took a trip to a pain clinic to finally get the GPN confirmed too. But this has taken a long a long time and now HFS is confirmed too. I’m waiting to see a neurosurgeon. I think all this could have been faster had I pushed harder in the beginning but there were other circumstance in my life (both my fathers becoming ill and dying, etc.) and so it is what it is. But I do urge you to go with your gut and if you know it’s ATN, stick to your guns and print out the info and highlight where you fit and and give it to your doc. if she is not willing to listen, I agree with kcDancer, find someone who is not doing you a disservice by dismissing your own instincts. And find someone you can trust to go to your appointments with you to help keep you on track if you get stonewalled. Keep checking in here. We’re all different.
All the best
Bella