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Old 05-14-2008, 01:22 AM   #1
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JMiller22 HB User
JMiller22's Pain and Subsequent Pain Management Story

Hey everyone, my name is Jeff.

To start off, I'll say a bit about myself. I'm 18 years old, and I'm a full-time student at the University of California at Merced. I'm a Political Science major with a minor in Economics. I hope to either continue on to law school after I obtain my degree here or join some sort of lobbying firm (big bucks in that! Haha!)

My pain story starts during the end of my Junior year in high school. Around late-April I started to get excruciating headaches, but they weren't what you'd traditionally call a headache. The pain was localized on my forehead above my right eye and was such a strange pain, I wouldn't be able to describe it until I was diagnosed.

I finished my Junior year still experiencing these 'headaches, only they were getting worse, and I had a new symptom. Ptosis, or the drooping of the eyelid. A visit to my ophthalmologist led to him ordering an MRI. The MRI revealed a tumor in my frontal right sinus cavity about 1.2-1.3x the size of your average everday egg. The tumor was actually pushing my forehead out and down and causing the eye to droop. There was a massive infection that was around the area of the tumor, which, since I had been undiagnosed for so long, had corroded most of the bone between the back of my sinus cavity and my brain.

Anyways, skip forward to about 4 months after I had the tumor removed. Up until that point I had been completely numb in my forehead, but the pain came back, seemingly out of nowhere, and didn't go away. I go to my local doctor to get it checked out to make sure nothing was growing back or anything, but he just confirms that during the surgery a nerve bundle or bundles was/were severed and that there was damage done to the forehead of the skull where the tumor was located. The surgeon never warned me about this possibility and refuses to admit that his surgical team probably did this, so now I'm stuck with this god-f***ing-awful pain for the rest of my life because this surgeon thinks that since he's a professor and head of a department at a very, very prestigious university and a Harvard grad that he's to much of a God to make a mistake. Everything he said to us was so condescending, too.

Sorry about the rant, but to this day, almost two years after the surgery, I still can't stand the fact that I deal with a constant 10+ on the pain scale without meds because of his mistake. I also have unrelated knee problems, so that adds to the agony.

As of now, at the age of 18, I take between 6 and 8 Norco 10/325's, 300 mg. of Lyrica and a 50 µ fentanyl patch every 48 hrs for pain. Then I take 2 mg. of Klonopin 4x a day for anxiety. Another result of the surgery is that I now suffer from petite mal siezures, so I take 150 mg. of phenobarbital a day. Now, you may be thinking 'wow, so many depressants, how do you stay awake?' The answer is, I have narcolepsy, so I take 30 mgs of Adderall instant release 3x a day, never later than 4pm. And, hey, believe it or not, I have insomnia, so I now take 45 milligrams of temazepam at bedtime up from 30 because of tolerance to get myself to sleep.

Its absolutely absurd. I randomely fall asleep during the day because of narcolepsy, but I can't fall asleep at night because of insomnia and the pain. I hate this so Godd*** much. I have no quality of life. With that dose of painkillers, I'm lucky to get to a 5. The one thing I'm happy about is that I don't get all drugged out by these medications, they simply allow me to function, but I've refused to go higher. I'm only 18 years old, just how high can I go, since I've been told that I'll live with this for the rest of my life unless I'm lucky. But luck hasn't been on my side.

I'm sorry if I come off as being a whiny *****, but I really need somewhere to vent. My parents don't understand this AT ALL. Even though doctors telling them left and right that I need this to function, they're convinced I'm a junkie, living from pill to pill. I've managed to keep a 3.8 GPA my freshman year at University. How? I've got no freaking clue.

And I absolutely know that my pain pales in comparison to most of the people on here, and I mean absolutely no offense to any of you when I post how bad I have it, its just that its so hard, especially when I have nobody that understands me. I just hope that by coming to this site I can find some advice and talk with people that understand me.

To all that suffer from pain, if I believed in a God anymore, you would be in my prayers, but since that won't happen, I wish you a pain free day.

Thank you for reading,

Jeff

 
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Old 05-14-2008, 05:27 AM   #2
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Join Date: May 2007
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skych HB Userskych HB User
Re: JMiller22's Pain and Subsequent Pain Management Story

Hi Jeff,

Welcom to the board.!!!!

Please don't discount your pain! It is yours and it is real.

You really have been through the ringer!

I admire you for continuing to go to college and pursue your goals. I am a college student to, but I am 38 yrs. old and with my own pain I find it very difficult some days. I have also maintained a 3.5 GPA for 3 years. I am trying to become a nurse. I actually put off applying to the nursing program this year because of my neck problems.

Jeff there are so many understanding peole in this forum with a wide variety of issues. We are like a big family here. Lots of love and kindness.

There was a person that posted before with a very similar story to yours. I almost thought you might be the same person. Did you post here before?

Anyway welcome and I will be looking for you around the boards.

Chrissy

 
Old 05-14-2008, 07:41 AM   #3
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Join Date: Sep 2007
Location: California, USA
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JMiller22 HB User
Re: JMiller22's Pain and Subsequent Pain Management Story

Yeah, I posted on here probably 6 months ago, but my internet connection was down for a while and I couldn't visit the site for the longest time. Since the last time I was on here though, I've had another surgery and things have got quite a bit worse.

I'd just like to thank you for taking the time to reply. I'm sorry that you have to suffer as well, and I wish you well in your quest to become a nurse. I know several people that are returning to education at an older age with higher aspirations in mind and I have the utmost respect for them since I know how hard it was to make the decision to continue education even straight out of high school. I couldn't imagine how hard it would be after being in the work force and having a family for so long to return to get what you really want.

 
Old 05-15-2008, 12:58 PM   #4
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Join Date: Feb 2008
Location: NY
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cmpgirl HB User
Re: JMiller22's Pain and Subsequent Pain Management Story

Jeff, You've certainly come to the right place. As Chrissy said, there are some truly amazing people here, who have compassion and empathy to spare. Your journey has been an arduous one, for sure. And I admire your determination to live your life to the best of your ability.

The family issues are more common than you could know. So many times, family members have misconceptions about what it is like to have constant, debilitating pain. No person, be they a parent or a best friend, can understand this life, unless they have truly lived it. It's generally best to not really talk about the meds you take, with anyone who refuses to understand how they work. People are always going to assume that narcotics = addiction. And trying to explain the concept of addiction vs. dependence, can be an effort in futility. Heck, look at how many in the medical field, share the same misconception!

Anyway, I am glad that you found this Pain Family, and I would like to extend a warm welcome. We are here for each other all of the time. So, teach, vent, and support away! We'll be listening.

 
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