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Old 07-29-2009, 09:55 AM #1
gamadaha gamadaha is offline
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Angry Meralgia Paresthetica & Trigeminal Neuralgia questions

Hello to all,

I am transitioning to Neuro Talk from another site, so I am NEWBIE here - I posted here yesterday, but have retitled my post hoping I get more responses this way, and tried to clarify a couple of my questions.....

MP = My name is Mary. I have been diagnosed with Meralgia Paresthetica, bilaterally none the less, since January 2009. Not getting better at all. I am on Neurontin, Effexor and weaning off of Oxcarbazepine due to side effects. I wont ramble much, but i just want to say this is a very very painful condition, and when people go to the internet and look it up, they make it sound like its just this simple little pain that will go away if you change your clothes! They ALWAYS say it is from being overweight or wearing tight clothes, that is malarky! Gosh that makes me so mad, it is disturbing! I am 50 and I have never been overweight in my life (until GETTING this condition and taking Neurontin - (put 25#'s on me in a matter of 4 weeks! however, it works wonders on the shocks for me) The drugs make you stupid, fat, and just plain out of it, but I cannot do without them!
I DO NOT wear tight clothes - and never will. So none of this makes sense to me. I have nerve shocks terrible, tingling, numbness itching and my muscle seems lumpy and irritated. Some nights, this can be somewhat debilitating actually! Some people have this for years and years. I hate the way nobody understands this painful condition, (except my Neuro, she is the best).][I]Anyone else that can relate?[/I][/B]


TN = Also, This IS MY IMPORTANT QUESTION, LOOKING FOR MULTIPLE ANSWERS please!! I HAD Trigeminal Neuralgia 3 years ago. It lasts for 3 weeks. Took a medication at the time (the name of the med escapes me at this moment - probably due to short term memory loss from my current meds - omg ) It went away. I had horrible electrical shocks in my right TEMPLE and my right ear was painful as well as numbness to the right side of my face. What I NEED TO KNOW IS: Does TN ALWAYS RETURN!! I read alot [I]about how it goes into remission for months or years, but it has been 3 [/I and thats all it says. I never see where it says it can be so that it sometimes doesnt return? How long is years? Most I ever see is more like months than years. I read alot of posts, but this question is never addressed. Most people say it returns in a very short time, like 3 month, or the like. Have I escaped this? I only get a kind of shooting pain in my temple maybe once a month or so now. Never thought much about it until the Neurologist brought it up when diagnosing my MP.

If anyone can shed light on this, I would so greatly appreciate it. I WILL get the book Striking Back, but would love to hear from fellow sufferers!

Regards
Mary
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Old 07-29-2009, 10:12 AM #2
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Hello Mary, and welcome to NeuroTalk! If I've already welcomed you, I will say hello again!

Here's a link to the MP forum:
http://neurotalk.psychcentral.com/forum76.html

Here's a link to the TN forum:
http://neurotalk.psychcentral.com/forum26.html

I wish you all the best.
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Old 07-29-2009, 03:31 PM #3
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so I could print out your letter and respond to it in a more detailed fashinion. DEAR MARY, although I am not familiar with either condition you describe, I am sure in sympathy for someone who has something no one understands. You are fortunate in that your doctor at least does. My PCP simply refers me to specialists, each of whom gives me a different Rx for a different condition. Then when I have complaints, he just says, "gee you just take so many meds. Each one has side effects. It's hard to say!" But I have had severe "electric shocks" to the brain [coming off Cymbalta], very severe itching [long-un-dx'ed allergy to Tofranil], restless legs-every night, and lots of pain. And I certainly don't think wearing bigger clothes would help anything! Bless your heart. This is much like mental illness - from which I suffer - let's face it, people who write about it and treat it usually haven't had it, i.e. they don't know what they are talking about! What is worse, they have studied it, so they think that they DO! Let's face it, Specialists are one of the biggest reasons we have this forum - to talk to people who've had something similar or for some other reason, understand something of what we are feeling. Re the TRIGEMINAL NEURALGIA recurring: again, who is saying this? The episodic shooting pain in your R temple that you mention might BE the recurrence, and you may never have anything more. The shocking sensation you have w/ the Meralgia Paresthetica may be the recurrence. Or the discomfort of the MP may actually block out the painful sensations of the TN - like a TENS Unit, or like, if you had a severe headache, and someone hit you in the toe with a sledgehammer, you wouldn't have a headache anymore - not til the toe stopped throbbing anyway. I can't blame you for dreading an oft-predicted recurrence of something that was was traumatic. But if it's been 3 years, I'd say that you've beat it, aside from the above. billie
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Old 07-31-2009, 01:09 AM #4
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Default Mary

Welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene
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