The road I've been on
Looking back to where I was in October just 6 and a half months ago I truthfully can't believe I'm now here.
I'm 17 years old and have trigeminal neuralgia. I had a bad attack last spring as well and nobody knew why I was in so much pain. It started with a scalp surgery I had to remove a birth mark and I was fine until 6 weeks after the surgery and I woke up in extreme pain and missed the last three months of my 10th grade year.
By the time July hit I was feeling really good and knew I could successfully carry on with my high school career. At that point for all I knew that pain I had was just random and I was never going to have it again.
Man I was wrong...
Next thing I know it's September and that same shooting pain on the left side of my face is back. My mom instantly calls my doctor and I'm in his office within an hour trying to figure out what to do. We all agree the next step is to get a referral into a nearby neurologist (Little do I know that'd take about 4-5 weeks to go through and get an appointment) and I then agree to try acupuncture.
The acupuncture worked! I was back at school the next day and had high hopes that if the pain returned all I would have to do is get acupuncture.
Sadly I was wrong again..
October 18th the pain came back worse than I could ever imagine it being. All I remember is basically running out of my health class straight to the health office to call my mom to come get me. Luckily by that point I had an appointment with a neurologist and was diagnosed with severe migraines (which truthfully never seemed right to me or anybody in my family but we went with it.) Once the pain hit my mom waited a few days to called my primary care doctor and my neurologist because we wanted to try the medicine first and they both said to get into an infectious disease doctor to make sure there is no infection. We find out there isn't an appointment until October 24th.
I keep hoping that my pain will go away before October 22nd which was my nieces first birthday two hours away from me. All I wanted was to be there! Sadly, I didn't get to go because the pain was so bad that I could barely open my eyes.
October 24th comes around and the infectious disease doctor runs through everything I had ever felt, taken, been through etc. and eventually says she wants an MRI and that she'd call later that night with the details. My parents and I leave feeling a little confident that maybe this will lead us to some answers.
I could barley walk in the door before the home phone started ringing saying we needed to head to the hospital right then for an MRI. That's all I was expecting when they said to go up to the fourth floor until I walk into a hospital room with my name written on the board.
Things at the point became real to me. It was a little more serious than just migraines. I stayed over night in the hospital for testing to be sure I didn't have some major infection or a stroke or even cancer. Everything came back normal and I just went home the next afternoon.
A few months pass and I'm still in pain, none of the medication I've gotten is making any difference and I've missed about two more months of school. Honestly, I begin to think I'm going to die. I had no idea what was wrong with me and why I was just constantly hurting and why nobody could figure it out.
My neurologist decides he wants to admit me in the hospital the week of December 10th to try the DHE infusions (because he still believed I had migraines). It was horrible! those infusions were poison to my body! I had bad chest pains, extreme nausea, I couldn't walk because the medicine would just make my legs collapse, it was hard to breathe. It was horrible (it doesn't mean it doesn't work for people who actually have migraines.)
Finally December 12th comes around and the DHE is CLEARLY doing nothing so my neurologist makes another decision to do a nerve block to see if it it in fact the trigeminal nerve that's affected. The outcome is good! It concluded that it is the trigeminal nerve and I finally had a real diagnosis of Trigeminal neuralgia! I felt like my life finally took a right turn in the right direction!
From then on I saw three different doctors that confirmed the diagnosis and got a referral into a teaching hospital that has a facial pain clinic specializing in TN.
In the mean time I'm still in excruciating pain not only with the shooting pain on the left side of my face but also even though the nerve block helped diagnose me I now have migraines caused by the nerve block and DHE infusions. That went on until February 5th when my appointment to see a pain doctor finally came around. He put me on amitiriptine and introduced to bio feedback. That appointment changed my life because that's what has kept my pain under control.
Now in May I am able to be back to a normal life! I am finishing my last credit of high school through home instruction a year early, getting ready to get some extra credits at the community college in my town this summer and fall. Then off to a university i go in the winter. I am so thankful that I have over come all that I have. It still amazes me every time I look back at where I was. I was in bed for 5 months about. But now, I'm out being a 17 year old again, enjoying my life doing the things I love!
Let this story tell you that even though current times can be rough but there is always a light at the end of the tunnel! I know that from experience. I now know the true value of life and because of that I have never been so motivated to chase after my dreams and leave my mark on this world! I can't wait to see where my life is going to go with the drastic changes I have coming my way very soon.
I'm 17 years old and have trigeminal neuralgia. I had a bad attack last spring as well and nobody knew why I was in so much pain. It started with a scalp surgery I had to remove a birth mark and I was fine until 6 weeks after the surgery and I woke up in extreme pain and missed the last three months of my 10th grade year.
By the time July hit I was feeling really good and knew I could successfully carry on with my high school career. At that point for all I knew that pain I had was just random and I was never going to have it again.
Man I was wrong...
Next thing I know it's September and that same shooting pain on the left side of my face is back. My mom instantly calls my doctor and I'm in his office within an hour trying to figure out what to do. We all agree the next step is to get a referral into a nearby neurologist (Little do I know that'd take about 4-5 weeks to go through and get an appointment) and I then agree to try acupuncture.
The acupuncture worked! I was back at school the next day and had high hopes that if the pain returned all I would have to do is get acupuncture.
Sadly I was wrong again..
October 18th the pain came back worse than I could ever imagine it being. All I remember is basically running out of my health class straight to the health office to call my mom to come get me. Luckily by that point I had an appointment with a neurologist and was diagnosed with severe migraines (which truthfully never seemed right to me or anybody in my family but we went with it.) Once the pain hit my mom waited a few days to called my primary care doctor and my neurologist because we wanted to try the medicine first and they both said to get into an infectious disease doctor to make sure there is no infection. We find out there isn't an appointment until October 24th.
I keep hoping that my pain will go away before October 22nd which was my nieces first birthday two hours away from me. All I wanted was to be there! Sadly, I didn't get to go because the pain was so bad that I could barely open my eyes.
October 24th comes around and the infectious disease doctor runs through everything I had ever felt, taken, been through etc. and eventually says she wants an MRI and that she'd call later that night with the details. My parents and I leave feeling a little confident that maybe this will lead us to some answers.
I could barley walk in the door before the home phone started ringing saying we needed to head to the hospital right then for an MRI. That's all I was expecting when they said to go up to the fourth floor until I walk into a hospital room with my name written on the board.
Things at the point became real to me. It was a little more serious than just migraines. I stayed over night in the hospital for testing to be sure I didn't have some major infection or a stroke or even cancer. Everything came back normal and I just went home the next afternoon.
A few months pass and I'm still in pain, none of the medication I've gotten is making any difference and I've missed about two more months of school. Honestly, I begin to think I'm going to die. I had no idea what was wrong with me and why I was just constantly hurting and why nobody could figure it out.
My neurologist decides he wants to admit me in the hospital the week of December 10th to try the DHE infusions (because he still believed I had migraines). It was horrible! those infusions were poison to my body! I had bad chest pains, extreme nausea, I couldn't walk because the medicine would just make my legs collapse, it was hard to breathe. It was horrible (it doesn't mean it doesn't work for people who actually have migraines.)
Finally December 12th comes around and the DHE is CLEARLY doing nothing so my neurologist makes another decision to do a nerve block to see if it it in fact the trigeminal nerve that's affected. The outcome is good! It concluded that it is the trigeminal nerve and I finally had a real diagnosis of Trigeminal neuralgia! I felt like my life finally took a right turn in the right direction!
From then on I saw three different doctors that confirmed the diagnosis and got a referral into a teaching hospital that has a facial pain clinic specializing in TN.
In the mean time I'm still in excruciating pain not only with the shooting pain on the left side of my face but also even though the nerve block helped diagnose me I now have migraines caused by the nerve block and DHE infusions. That went on until February 5th when my appointment to see a pain doctor finally came around. He put me on amitiriptine and introduced to bio feedback. That appointment changed my life because that's what has kept my pain under control.
Now in May I am able to be back to a normal life! I am finishing my last credit of high school through home instruction a year early, getting ready to get some extra credits at the community college in my town this summer and fall. Then off to a university i go in the winter. I am so thankful that I have over come all that I have. It still amazes me every time I look back at where I was. I was in bed for 5 months about. But now, I'm out being a 17 year old again, enjoying my life doing the things I love!
Let this story tell you that even though current times can be rough but there is always a light at the end of the tunnel! I know that from experience. I now know the true value of life and because of that I have never been so motivated to chase after my dreams and leave my mark on this world! I can't wait to see where my life is going to go with the drastic changes I have coming my way very soon.
Replies
ithough i was too young and i am 23 with the same problem. in my case im allergic to hydrocodone meaning anything i take in that family could cause a severe allergic reaction and it may be the last pill i take.. i very sensative to medicine so i always look forward to side effects. this is/was the first pain free week i have had but the pain is back and im very very sorry to hear your story, you are very young. your whole life is still way ahead.