One step at a time

Sometimes I wonder if going through my own personal hell is ever going to be worth it, especially when I have no family or friends to turn to. I just keep telling myself that my first appointment with my neurologist in ten years is only a week away. Whatever they suggest I'm going to do it, I need some relief. College is so difficult with my TN, especially during the flare up I've had for the past week. I feel more alone than ever now though. I called my mom to talk to her today and the first thing out of her mouth was "I wish I could call you for once and not have you sound like you're dying" after that I said I had to go and hung up. These four white cement walls formally called my dorm are beginning to feel more like a prison than my "home away from home." I called my doctor about the Lidocane cream some people here have suggested for some relief but they said they couldn't prescribe it without my neurologist's permission and my neurologist wouldn't prescribe it until after I saw them next week. I just keep looking at it this way, if I've survived TN for ten years without medication or any pain relief then I will be able to last for seven more days even with this awful flare up. I'm just so scared about taking medications for my TN. I'm worried the side effects will be too much for me, and I'm scared that something might change, be it my mood or my thought process, that will prevent me from doing my art. I don't want to lose my scholarship, but at the same time I also want to be healthy and be able to function again. My roommate, who had been like a guardian angel these past few weeks, says its all going to get better eventually. God I hope she's right.

I can understand your apprehension.... as bad as it is your current state is the one you are coping with, dealing with and functioning within ( somewhat!!). To start hitting it with medications there's the fear that the current state will change in a way that will corrupt your natural creative energy, inspiration or intellectual drive. Then there's the fear that you may get some long term relief, but at the cost of those things. Argh!

It's a difficult process working thru medications ... none have an instant effect ( Bar pain relief drugs) and unfortunately it can / will take a while to determine if a particular drug will work, and at what dose. And of course it is all based on your subjective assessment. So you can spend ( waste ) a lot of time pondering " Am I feeling better or worse or what?". Very annoying to have such thoughts foremost in your head a lot of the time.

It can be very difficult for individuals who have not experienced your TN situation to understand or accept it. You know the story " But you look fine". You can only explain what you're going thru ... you know it is 'real'. I've come to accept that people may generally think "it's all in his head" and in all truth that is how I would most likely viewed things if the roles were reversed. In fact I confess I WOULD have though that. You may not be able to have your mother fully accept your situation. These days I accept this can be the way with a lot of people, but I bear them no ill will as some disorders cannot be appreciated except by the sufferer. ( Thank God!).

This site is a great supportive community. People care, I care. I think it a pretty awful thing to afflicted with particularly at your age. You have my sympathies and compassion, ( and don't be all tough and dismissive and say " I'm not looking for that!" because like it or not you've got it!). Craig.

I suffered for 6 years with unbearable flare up pain. After all of the meds and other self administered remedies I finally had an mri/mra ordered ( I was a chiropractor ) and it confirmed I had compression on the trigeminal nerve by the superior cerebellar artery. I researched online physicians using the minimally invasive endoscope surgical approach found Dr. Michael Alexander at Cedar Sinai Hospital in LA. I sent all of my records scheduled an appointment, flew down and saw him on a Thursday. I had the surgery done on Fri, was in ICU for one day, a regular room for one day and went home the next day. I have had no pain in 2 months since the surgery. There is hope!! Don't give up!!

Jay in North Idaho

I’m so sorry you’re suffering so horribly…both physically and emotionally! I am an artist too, and understand your fear that side effects might impact the creative “spark” within you. I’ve been on various TN meds for 15 years, while there are side effects, which I don’t like, my creativity has remained intact. I would find it to be incredibly difficult, if not impossible, to function without medication in the environment you describe. Blessings dear…you are a strong soul to have lived for so long without help!

Oh my gosh, I'm so glad to see someone besides me essentially making them self suffer because of the fear of meds. I've been living with this for years but it flared up bad this spring and I finally found a doc who diagnosed me. She gave me Gabapentin and I still have not taken it. I've created discussions here about this and received a lot of encouragement to try them but I'm still scared. I feel like you trade one debilitating condition for another. I know I make myself suffer but at least I know how to do that. I'm scared that the medication or even medications might ruin my life in a different way not to mention the harm they can cause to your body and organs. Most people here choose the meds over the pain and I totally understand why I just haven't been able to get over the anxiety of thinking something bad might happen if I take them. I too am in the process of pursuing the Lidoderm patches. I'm so sorry about feeling alone. My husband pretty much has gotten to that point like your mom where I feel like I should just not even mention it and try my best to pretend I'm ok. My parents have been wonderful thankfully but I still feel like I've exhausted everyone with this. Good luck with your appointment! Hang in there please keep us posted on what meds you choose (if any) and what they do as I will be curious.