Sunday, October 03, 2004

Trigeminal Neuralgia, or as I call it: Demon-Spawn

Yes, dear bloggies...I am once again, up and in pain. So I thought I'd take a moment to describe trigeminal neuralgia.....HELL ON EARTH.

I am pretty good with pain. I've had kidney stones, gall stones, kidney stent, root canals, back labor, natural child birth....I understand pain. But nothing, nothing is like trigeminal neuralgia. It's like having a downed live wire shooting electricity into your face. It's excrutiating.

If I'm lucky, it never starts. I take medication that (in theory) is supposed to help prevent the attacks. If that doesn't work, I take Vicoden. If THAT doesn't work, it's off to the hospital I go, for a shot of Demerol.

Now, Demerol's not a bad drug...it makes me goofy and kills the pain pretty well. There are, however, some down sides to it.

The first problem with it is that it makes me sick to my stomach...even with Phenergan.

The second problem is how it's administered: I hate injections. Now, that might sound weird, coming from someone with as many tattoos and piercings as I have. But tattoos and piercings are FUN. I get them when I'm in a good mood. Demerol I get after days, sometimes weeks, of pain and no sleep. I'm not in a good mood when I get the shot. I'm desperate.

The third problem is going to the ER. I hate doing it. It's demeaning. The fact that I've been there so many times, the nurses all know me by name is humiliating. I have to go, in terrible pain and unable to speak, show them my pain-management contract, sit in the lobby while "real" emergencies are tended to, then explain to some new doctor what to do (even though it's specified, very clearly, in my contract what the problem is and what to give me). Most of the time, the schmuck doctors end up calling my regular doctor to ask them what to do....even though, once again, my regular doctor WROTE IT ALL DOWN FOR THEM in the damned contract. This means even more time I have to sit there in pain.

And then, just for fun (problem number four), every now and again I'll get a doctor who thinks I'm there drug-seeking. I know it's coming when they ask me, "How many Vicoden do you have left?" Plenty, they just ain't working. Then the nurse comes in with the cup. They never come out and tell me they are running a drug test....they just hand me the cup and tell me to piss in it. To say that this is humiliating and demeaning is putting it far too mildly. I can't tell you how many times I've cried, in frustration and embarassment, over this. The first few times, I understood. But I've now taken probably a dozen of these piss tests...all negative. How many times do I have to go tinkle for them to see that I'm not some junkie on a bender? I have a legitimate, chronic-pain issue. A diagnosed disorder for which I'm seeing a specialist. I have a pain-management contract that specifies under which circumstances I must go to the ER. So, while I am sitting there, in the ass-less gown in horrifying pain, why are they treating me like a criminal?

The fifth problem is that the Demerol wears off, and I'm left with the Vicoden. I estimate that 8 times out of 10, that one shot of Demerol is enough. It enables me to sleep, so I can cope with the pain. Sometimes, that's all I really need. It's those other 2 times that are the clincher. It means that after the Demerol wears off...the pain comes back. And I'm off to another trip to the ER.

I wish the pain would go away already...but that isn't very realistic. There's no cure for TN. To make matters worse, I am about to get some serious dental work done that will, in all certainty, make me have a bad attack of the pain. I've been avoiding it like the plague, afraid of the pain, but now the unresolved dental issues are making the TN worse, so it's off to have all my teeth yanked out I go.

So be warned, ZEN PRETZEL TRICK fans: I use the Internet as an outlet when I'm in pain. Let's just hope there are plenty of quizzes, bad baby names and nutbags for me to obsess over.

4 Comments:

At 7:27 AM, Blogger mdmhvonpa said...

Yikes. Sounds almost like you should just get all your teeth yanked and skip the dental care henceforth. That, or see if you can get your hands on some of that dental anesthesia (sp?) gell and smear it on your face to numb it up. Not sure if that would work for TN, but it would be an interesting experiment.

 
At 8:37 AM, Blogger motomama said...

I'm sorry you have that pain. I am a frequent migraine sufferer and there have been two occasions where Demerol was the only thing that killed the pain rattling my head. In fact, as I type I have a nagging one starting.

Marijuana?

 
At 6:28 AM, Blogger Zen Angel said...

Thanks to both of you for your kind comments....I am getting all my teeth yanked out. It's just easier in the long run, then having to deal with a lot of dental work that's going to cause a lot of pain.

As for the marijuana....read my post "Measure 33: Pass the Bowl and Pass on this Bill." :)

 
At 5:13 PM, Anonymous Anonymous said...

ive been suffering from atypical facial pain and trigeminal neuralgia for five years,and im 25 years old,its in the right side of my face,and believe it to be caused by severe TMJ and rhuematoid arthritis eating away my jaw joint. Demerol is the only thing that helps me as well. nerve pain drugs like tegretol or neurontin dont work.im sure you know by now the horrible heroin like physical sickness and withdraw you have when youve been taking demerol for months and you run out and cant get to pain managment. it wouldnt wish that sickness on my worst enemy.the doctors will eventually stop giving it to me because its long term use will breakdown your metabolic system and destroy your liver. only people with terminal sickle cell anemia can get a permant overide

 

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