Does anyone else have parents who don't really understand what you go through everyday with TN?
I have been living with TN for most of my life but wasn't diagnosed until nine years ago. I have never been on medication to help the pain because my mom worried about the side effects and wouldn't allow the doctor to prescribe me anything. After a recent car accident my symptoms have gotten much worse and are now reaching the point of being unbearable. Functioning daily is becoming harder and harder. I have an appointment with my neurologist in a week and I will do whatever it takes for some relief but seven days seems like an eternity right now. To make it all worse I just started college a few weeks ago. They don't seem to understand how this is affecting me. My mom just tells me to take some motrin, drink some caffeine, and rest but that doesn't help. She thinks I'm using my TN as an excuse to give up. She tells me "maybe you're not cut out for college and should just come home and go to community college." My Dad is even worse, he says its all in my head. Does anyone else have this problem? How can I make them understand what I'm going through? I don't know what to do anymore.
So sad that you dont have any support from your parents. Its not uncommon for others to think its in your head because there is no obvious evidence of the extreme pain that you are feeling. Can you take your mom or dad with you to see your neurosurgeon. Maybe that will help them learn and understand the pain and how it is impacting your life. I wish you the best.
I’m sorry to read of your parents lack of understanding.
If it were me, I would google search some images of trigeminal neuralgia, print them off and show your parents along with some literature that explains TN. They obviously have no idea what TN is nor what kind of pain it can cause.
If you’re college age, is that old enough to get your own prescriptions?
It is here in Canada…I hope you can educate your parents and get them to understand, but if not… Try not to let that stress you out, ( stress can aggravate pain) ultimately you need to take care of you and focus on you. Your parents love you, and hopefully with time and some research on their part they’ll come to understand what you’re going through.
In the meantime, get yourself on a medication to start and slowly increase with your neurologists guidance so that you can be fully functioning and enjoy your college years!
I was fully functioning on 800mg Tegretol CR and only experienced side effects in the beginning, they all went away once my body adjusted to the med.
Communication is key, you need to express your feelings to your parents and let them know how they are making you feel…I hope things work out, keep positive!
There is a groups tab above…there is a group for young adults here! Sign up!
Wait a week for neuro,
or have your reg. doc call in tomorrow, lidocaine cream for your face…instant relief, for many!
If you can also get a script for lidocaine face patches, you can wear them when not in public…works even better than cream up to 10 hours!
Lastly for now , go to library or amazon, and get the book STRIKING BACK, by dr ken Casey
All you need to learn as an adult to figure out what treatments YOU want to try for your pain!
Show parents the book or google images for TN! ASAP
The faster you learn TN 101,
the faster you will have knowledge and know what drs and what meds are NOT for you.
You need to also speak with a student advisor or academic advisor TN can be can considered a disablity for learning, due to the symptoms (such as holy cracker flacker pain, and even the side affects from medications). Your school will need you to have your doctor fill this out along with you and what would be reasonable things or accomadations to help make so you can learn just as everyone else. Do this pronto kiddo! Sometime this process can take a bit, my school had a one to three month period for all this to get done.
As for your treatment; as an adult you have learn and understand your illness/s and the treatments that options for you and go over them with your doctor. Medical stuff is no fun ever and I’m sorry to hear that this is your welcoming mat to colledge and being an adult. None of here can tell which treatment of drug therapy, surgery (called an MVD), never injections, or any other type of treatment is going to be for you. It’s important to know that there is no one medication/s that fits all for TN, it’s a process a of trial and error.
By the way welcome to the TN support group. Sorry that your joining, but we’re glad you found us. If you have any questions, need to cry, shout, yell, or just be happy when you’re having a good day feel free to do so.
I know this was not to helpful but I mean it with your school stuff. It’s just the same as those students that for dyslexic. Well maybe not quite the se but hopefully you get the idea. Hope you have a great day that is pain free:)
I'm so glad I found this place. It is so nice to finally have people who understand and I can go to for advice. I will definitely talk to my advisor about my TN and get the proper paperwork filled out. You all have made me feel so much better already. I will keep you posted on how the relationship/ understanding with my parents is going and how the appointment with my Neurosurgeon goes as well.