Just wanting to share some thoughts and experiences

This will most likely be long so I apologize. I want to start by saying I’m so glad to have found this place. Not for many years have I had any sort of validation that the ghost I’ve been chasing is not all in my head, well I guess literally speaking it is. Since I’ve found this I’ve even been able to tie other things into the TN. I’ve had the burning in my gums and tongue and the pain in my jaw since 2010 but I forgot about all of the instacare visits for my throat that turned up nothing and the ENT visits for sinus pain that turned up nothing. All the different internal medicine and gp’s who would run tests and tell me I’m healthy. I have truly felt like I was some sort of hypochdriac and I felt bad about that and about myself for letting my mind play all these tricks on me but they feel so real. I haven’t had insurance for about 5 years and I was doing all that chasing when I had insurance so that means I’ve been dealing with this much longer. My mom has lupus so I’ve been convinced that I had some sort of auto immune/inflammatory disease that no one could find. My blood is always good, scans, mri’s, xrays. I’ve continued the chase without insurance but with much more hesitation. I wait till it’s really bad basically. The more I read your stories the more I remember and feel comforted that I’m not crazy. My scalp really hurts, my sinus’s and ear really hurt. It’s funny when you are certain that you have an ear and sinus infection even though you haven’t had a cold but the doctor sees nothing but a healthy person. My mouth…I knew that I had some sort of tissue disease. How can your gums and tongue be on fire but everything looks fine? Try this steroid mouthwash and lidocaine but we still don’t know what it is. what about my jaw hmmm tmj? No popping or grinding or dislocation so I guess not. So guess there’s nothing wrong there. But wait a hard fixed lump right on my jaw, that must be causing this pain. MRI says it’s a benign lymph node, oral surgeon says it’s not causing my problems. So I’ve just lived with this for years knowing that there is nothing wrong with me at least that what all the different doctors say. Until this spring…everything got so much worse! My mouth, teeth, back, neck, jaw, cheek, ear, scalp, sinuses, everything hurts on the right side of my head! This is real and someone needs to figure it out. I found a new internal medicine doc. I told her everything I could think of. She wanted to start with sleep. We got that managed but my face is getting worse. I can’t be making this up, it hurts so bad but you still can’t see it. I explain the burning and the aching and now it’s in my teeth and cheek. I tell her it’s always there. I wake up with it and go to bed with it. Some days it’s less someday it’s unbearable. My friends and family, as loving as they are, are sick of hearing about it. Finally she gives me something…trigeminal neuralgia. She gives me gabapentin. I look all of this up. Finally!! Type 2 ATN…it fits! I’m not crazy!! I won’t take the gabapentin or the carbamezapine so she won’t treat me for it so maybe I am crazy but at least I know what I’m dealing with. All the years and doctors. It has been in my life for a long time and thanks to all of the information here I don’t feel bad about myself and all the chasing. As I write this my mouth is on fire and my jaw and teeth ache horribly but it’s real so at least I can know I’m not crazy. My poor husband, he has gone through all of this. We’ve been together 11 years and I’ve been chasing this for more that half of our relationship. He’s not been an angel, he’s been one of the loudest voices telling me it’s all in my head but I can’t really blame him. He knows as well as I do how many times I’ve been told there’s nothing wrong with me. Now that I have the diagnosis he’s sick of hearing about that. it’s hard for me to be normal right now. It’s hard to pretend you feel good when you don’t. I do try though and even though I have days when I’m no good I’m proud of the days that I live my life normally. What an accomplishment that has become. Oh well I guess we’ll sort that out with time. Anyways if you made it to the end, thanks for reading. I’m sorry you all have to go through this and many worse than me. Thank you for being here and for your stories. The decisions i am going to make about how I move forward with this will be directly affected by all of you. I think maybe I’ve broken the record for longest post :slight_smile:

May I ask why you won't take these meds? There are other meds you could try. I am on nortryptaline and it really helps and doesn't have some of the zombie side effects.

Are you going to see a surgeon for MVD?

The doc that diagnosed me told me I can have the gabapentin, carbamezapine or go see someone else so I didn’t even know how many options there were until I found this place. Also I’ve read more negative than positive on the meds. It seems that most people have pretty severe side effects that impact life almost as much as the pain. Not to mention the damage to organs and such. Really I’m just scared of them. I have thought about amitriptyline as an option and may pursue that. Is that similar to what you take? So far the oral surgeon does not support the MVD procedure but I know I need to find the right doc first. I have noticed that the lorazepam I take before bed quiets it down a lot I just haven’t tried it in the day. I’m quite busy so I need to be awake as much as possible. Most days I think I can deal with it other days I don’t get much done. I feel like I’ll find something I’m comfortable with soon. All of the info here helps, I just need a different doc. Waiting for insurance as well. Believe me though, I have gotten my bottle of gabapentin out several times but I just haven’t been able to bring myself to take it…too scared.

I would urge you to try the Gabapentin. In my case, the side effects are minimal. Only a bit dizzy sometimes, and I take quite a bit ( 600 mg 4x a day). It is well with the relief!

amytriptyline is in the same class of drugs as nortriptyline. The class of drugs that work really well are the anti-seizure meds but they have the "zombie" side effects because they slow ALL the neurons down. This would be trileptal and tegretol (aka carbameazpine). But gabapentin is in a different class of drugs.

You don't have to be scared of the drugs. Most of them have been around for a long time. Designed for other health issues but found to work with TN. It seems that TN is affecting your life. It's basically trading one set of problems with a different set. But the pain is controlled. I know that function much better with the side effects and NOT being in pain. The other thing to consider is that this illness affects those who love you. If a med works for you, it helps the ones who are closest to you. Sometimes you take meds for other people. It's hard on the people around you and if you might have a solution to it (meds) they may wonder why you don't try them. If you're not helping yourself than why should they try and help you, etc. It affects their lives as well.

Remember not everyone has the same side effects. Everybody is different. I had severe vomiting on trileptal but it took the pain away. When I couldn't handle vomiting everyday I switched. But it doesn't mean you'll have that side effect.

I am on a "cocktail" of drugs. One helping the other work better. Nortriptyline for facial pain (an antidepressant). Klonopin ( this is in the same family as lorazepam- and that seems to be helping you. , Tramadol (a non narcotic pain killer) and a lidocaine gel that I put on my face and gums when I have breakthrough pain. I am functional. I have focus and the side effects I'm willing to take.

As for surgery, most neurosurgeons insist that you try two or three different drugs before they will even touch you. These meds are a definitive which means if your pain vanishes then you do have TN.

Also it is much easier to prevent pain than to treat it. Get ahead of the pain.

None of us want to take these meds but we take them because the pain is so terrible. Our lives are severely affected when we are in pain. And though it's not a perfect solution it's the only one we have right now. You have been through the worst already. What if these meds work? Can you imagine not having to deal with the pain constantly? There are different meds out there. I'm not scared of taking meds I am scared that the pain will return and nothing will work.

I took the carbamezapine.I prefer no pain and not taking it,but i'm so glad it's available when i need it.I think if you gave it a try,you'd feel the same.Why suffer so much if it's unnecessary?

Agree with all posts, I don't think I could live on without Gabapentin and for me very minimal or no side effects, depends how much I have to take on a given day. It is my understanding from the Dr Gabapentin has the least side effects, but everyone is different. And for me, once the breakthrough pain starts it is much harder to calm things. Understand you don't want to take anything, but I think you would find the relief is well worth trying them. Also understand all you went through, I had 5 teeth pulled, never hearing of TN and guess my dentist either I was just desperate for pain to stop and sure felt like teeth, was not at all. Having more control of the pain than not on med, I look back and wonder how I even got through the days before I was diagnosed. I too, before diagnosis wondered if I was losing it. If they are willing try and educate your hubby and family and friends, there are videos, etc. Wishing you the best, glad you found us, sorry you have to be here, but since you do, this is the greatest place for support and understanding! Let us know.

Betsy

Thank you all for your words of experience. I promise I am not anti medication I just feel that these meds may not be right for me. Tkal, you are absolutely right that it is selfish not to try them for my family. My poor dad as suffered a great deal watching me go through this. He has been there with me through all of the this and has been one of the only people that believes that there was something to pursue. He wants me to try the medication desperately but I am so scared of the what if's. He tries to understand. My husband on the other hand is concerned about what the meds will do as well. But at this point he'd support anything that might make me normal again. I'm scared of how they might affect my brain, don't like feeling out of control, it gives me anxiety bad. But I'm also scared of damaging my body. I wish I could make this make more sense. It's like I know how to live with the TN and I know that some of the days it's not much living but I know it. I don't know these meds or how I can live with them. I'm not saying that I'll never try the Gabapentin, in fact I do plan to keep going with this and may end up with that being my best option. But first I need to find a doctor that I feel comfortable with, that will discuss all of the options with me and then I just need to get over the thought that this will just go away. I've spent a lot of time trying to convince myself that I'll just wake up one day and it will be gone. Knowing now what it is I've just got to accept it and find something that I'm comfortable with. I hope this makes sense. Thinking about what was said about taking it for my family is something I hadn't considered. This is why this place is so great because I can take these mental steps. I do have lidocaine for my mouth and I have tried Tramadol and Advil which did nothing. I will find meds that I feel comfortable with I'm sure and I will certainly let everyone know since I will be proud of myself for getting over this huge hurdle. I've mentioned in other posts that I have felt like my own worst enemy but I swear every time I've gotten the bottle out my heart starts pounding and something tells me not to take them, what if something bad happens. I probably need to find a good doctor and a good therapist. I do have days that I would do just about anything to make it stop. But I just cry and wait and eventually it dies down and becomes dull enough that I can deal. Thanks for reading and offering your thoughts. I hope I have not insulted anyone, I know no one here wants to take these meds. I understand why you choose the side effects over the pain. For right now, as I mentioned above I have already found great relief just in knowing that I haven't been crazy all of these years.

There is also lidocaine for face…patches or cream!!

Keep looking until you find a Dr you are comfortable with, it makes all the difference in the world and sometimes a challenge, but they are out there. I don't have insurance, but have been blessed to find a Dr tht works with me, he is not a neuro or GP, but by the Grace of God he knows all about TN and understands. The anxiety with TN is real and sometimes hard to control, but I also know it makes things worse. It is hard for our family and friends to see us suffer, they feel helpless. I am thankful for you that you have found an answer, wish for you it was not TN, but since it is now you can begin the journey of finding help and the best option that you are comfortable with. You are doing your research which is good, but also don't get overwhelmed, I tend to think too much, a joke here my brain needs an off button! Be good to yourself, when you can do things that bring you happiness, for me it is my pets and my garden, I also like to read, especially self help type books about being positive, etc. I am not promoting Gabapentin, but I have never felt out of control on it, but we are all different and educating yourself about side effects and doing what is best for you is what matters most. And you have us to vent to, ask questions and most of all support you in any way we can.

Betsy

When I read the description of tn2 I felt just like u, I’m not mad and here is soetthing that fits. I’m still searching for my cure but I’m just so grateful.u r all here. X