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06-24-2008, 09:02 AM | #1 | ||
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06-24-2008, 12:14 AM | #2 | ||
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Hey,
I have been diagnosed with atypical trigeminal neuralgia. I am 34 now and have had this condition for 17 years. The majority of my pain is in and around my left eye. There is even visible evidence of this because of the dark circles surrounding the left eye. My left eye is extremely sensitive to wind, light and lack of sleep. The pain is never ending. Sometimes the pain is stabbing. Sometimes the pain is burning. I am currently taking nothing for the pain. I am sick and tired of medications and have decided to "gut it out." I have not taken a medication that actually takes the pain away. I have surgery scheduled with Dr. JHO within the next few months. Wish me luck. They actually did find a compressed blood vessel that is probably causing the pain. I will keep you posted to tell you if the surgery is sucessful or not. |
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"Thanks for this!" says: | buntbean (10-19-2011) |
06-24-2008, 09:03 AM | #3 | ||
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Ellena |
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05-30-2009, 12:09 AM | #4 | ||
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New Member
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Hi:
I noticed that there area some very old post from people suffering from this disorder. Are you still active on this site. I would love to hear from you or any others who have this disorder, Thanks Shaughnna |
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06-11-2009, 10:20 PM | #5 | ||
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Grand Magnate
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HI guys,
Hate to be joinging the party here but I have V1 neuralgia as the result of an ongoing HSV1 viral infection. Yep HSV1 the herpes simplex cold ssore virus that apparently can live in your trigeminal nerve. And to think I have never had a cold sore in my life. Anyway some extensive dental work I was having caused the virus to come out. I have terrible burning pain along the left v1 nerve. |
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"Thanks for this!" says: | buntbean (10-19-2011), Burntmarshmallow (06-12-2009) |
06-12-2009, 04:24 AM | #6 | ||
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Shelley, we always hate to welcome people to this club, but there are a lot of caring people here willing to listen and share what they can, when they can. At least you are lucky enough to know what caused your TN. In my case, I don't have any idea and neither do the doctors. Are you treating with meds and are you seeing a neurologist? EE
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"Thanks for this!" says: | Burntmarshmallow (06-12-2009) |
06-12-2009, 03:51 PM | #7 | |||
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Grand Magnate
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((((((Shelley))))))
and you too((((( EE )))))) I feel like poo poo at the moment and dont have much to say but wanted ya all to know I care and am reading the forums. Are the meds helping with the pain Shelley?? EE how are things with you?? PEACE BMW |
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"Thanks for this!" says: | EE03 (06-12-2009) |
06-12-2009, 08:44 PM | #8 | ||
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Grand Magnate
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Oooooo noooo BMW I am so sorry you are feeling poo poo BUt thanks so much for your post and I am trying to mange through this pain as best I can until I get up to some dosage that diminishes the pain. I suppose I will get there eventually. Anyway I so hope you feel better soon |
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06-12-2009, 08:42 PM | #9 | ||
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Grand Magnate
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I am glad that I do because the antiviral meds really help even with the pain surprisingly. EE have your docs never thought maybe a virus could be causing it? Its an easy test for them to do a blood test for the IGG and IGM antibodies. SO right now I am being treated with valtrex for the virus. I am also using neurontin for the pain and today the pain doc asked me to try nortriptyline because I guess its a neuropathic pain of the trigeminal nerve so he considers it secondary TN. He also aske dme to think about some nerve blocks but I am to give the meds a try first. The hard part is that it not only affects the trigeminal nerve but also is affecting the occiptial nerves. He actually did a really good job of explaining why so it helps my mind to know what is happening when the pain is intense. Anyway its nice to meet you and thanks again for the warm welcome. |
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06-12-2009, 09:29 PM | #10 | ||
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Shelley,
I'll have to ask about those particular viruses as I don't know. I also suffer with ON but its due to my neck. These conditions are the pitts. Let us know how the meds work for you as you go on. The direct nerve blocks for the ON worked for me for a little while, but they are temporary. The initial anesthetic shot is heaven while it lasts. I got some prolonged relief after a second shot with steroids, but it also wore off so right now I'm in limbo there. I've never had any blocks for TN, but I don't know if you're referring to that too, or what. Maybe I'm just over tired and things aren't real clear right now. Take care EE |
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