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Old 05-05-2010, 05:38 AM #1
Andy219 Andy219 is offline
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Andy219 Andy219 is offline
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Default The meds are not working!

A couple of weeks ago I had a flare up of TN but this time it was on my left side, I normally have it on my right side. Went to the doctors office and explained what was going on, a dull ache fron the left ear to the temple and down to the jaw line. Costantly dull aching, except if i raised my voice, coughed, sneezed, laughed, touched my eyebrow and other parts of my face or if I move my head to fast or certain ways. Couldn't prescribe me tegretal cause I'm allergic to it. So I was prescribed Neurontin 300 mg, 3 times a day. After 4 days it seemed to do the job. I wasn't feeling great but alot better.

Now a week and a half later the left side was feeling fine. Then out of the blue at 330 in the am, I was jolted awake with pain on the right side of my face, worse then it ever felt before. So Tues morning I head back to my Drs office and see a Dr(not my normal one hes sick and is in the hospital) and this guy was very nice and sympathetic and apolagised becasue he said he didnt know what else to do. He called a Neurologist buddy of his while I waited and was able to get him to see me the next day in the morning. He then asked me well are you going to be ok until tomorrow, would you like some pain meds or anything to help you.

I said no, until I was diagnosed with TN I was prescribed every pain pill known to man and nothing ever helped in the slightest. Except if I took 3 times the dose of vicodine, because that just let me sleep. So now I'm sitting here, can't sleep and the pain is relentless, waiting for 2 hours before getting in my truck and driving to the nuerologist. Not looking forward to driving, but am looking foward to getting there and getting something that will help. Just had to come on and rant a little, it's been a long while since I came on here. But thanks for letting me vent.
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Old 05-06-2010, 01:18 AM #2
Andy219 Andy219 is offline
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The nueorolgist thinks I should stay on the same meds for now. She increased my dosage from 300 mg 3 times a day to 600 mg 3 times a day. I need to call her in 1 week to check in with her, and have a follow up appointment in 4 weeks. I kope this stuff works, its getting very irrtating and going to work where I have to wear a headset and talk all day is just adding to the pain and frustration.
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Old 05-06-2010, 02:40 AM #3
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Hi Andy, I hear your pain!

I don't suffer from Trigeminal Neuralgia as such, but as some-one with Multiple Sclerosis, I have had it once as a symptom of MS and it was just horrible. With that in mind I can certainly understand some of what you're going though.

I hope the Neurontin is helping your pain especially with the dose increase. I take something similar for nerve pain.... a drug more along the lines of Tegretol, but found it helps my nerve pain more than anything else has done.

You might find the dose increase makes you a bit drowsy at first but try and stick it out if you can, as the benefits are sure to out weigh the side effects.

Do keep in touch. I'm sure others will be interested to se how you're managing.
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Old 05-07-2010, 12:32 AM #4
Andy219 Andy219 is offline
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So far I think the constant dull ache is not as bad as it was. Oh its still there and very annoying, but just not as bad as it was. I'm still getting jolts of pain about 5 times an hour, roughly, out of nowhere. I'm still getting big jolts of pain everytime I move my head certain ways or to fast, or when I laugh, cough, sneeze or raise my voice. The good thing is I'm not getting pain when I swallow anymore, knock on wood, so I hope the higher dose is doing something. I've only upped the dose for the last 2 full days, so not sure if that the reason it seems to be getting better. It just started seeming to get better about half way thru my shift at work, so about 7pm.

The bad thing is I feel a bit dizzy and it feels like I'm floating when I walk. Not to sure what to do about it, as I'm a dispatcher for the railroad and have over a thousand miles of track, around 20 trains and 50 or so people working under my control. its my job to keep everyone safe and help them to the best of my ability to get them home alive. And lets not forget the countless cities and towns that depend on safe train movement. I'm going to call the dr in the am and ask her oppinion on whether I should be safe going to work on this dose or if she could write a note for me to take a few days off, as I work thru the weekend.

I've come to the decision to sell my boat and my truck as the boat is to painfull for me to enjoy. And after that sells, selling my truck as it hurts to get in and out of it, not to mention bumps and such. Going into the market for a car with a very smooth ride, hopefully that will help make commuting back and forth to work and dr offices a little more plesant.
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Old 05-07-2010, 06:10 AM #5
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Hi again Andy.

I'm glad you're sticking out the dose increase and when I read about you feeling dizzy, I was going to suggest you ask for some time off to allow your body to get used to the medications and when I saw later in your post that you need to be wary of other people's safety, I was pleased that you'd already thought of taking time out.

I was a registered nurse, so people's lives depended on me having my wits about me too, and under similar circumstances .... I took time off as well.

I'm sorry that more of our members with TN haven't seen your post yet, but hopefully they will soon and be able to give you better advice than I can.

It's good you're seeing your doctor again. Please let us know how you get on.
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