My 1st post I have MANY questions

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Hello everyone! I am so happy to have found this website!....I will give alittle bit about me and why I joined this group. About 1 year ago on a Sunday Morning I got a phone call from my father telling me to get to there house...his exact words were "Its Bad...Its your mom...get here!" ( I live right next door) So I ran up to my parents house and there was my mom at the kitchen table grabbing her neck and was having difficulty talking....I called 911 and they took her to the hospital. We spent some time there and they didn't find anything. A couple days later the pains were back....we had her at the family doctor, then after no reasons, ( I work for a Oral Surgeon) I asked one of my doctors....with just alittle discription, my doctor said it sounds like gpn. I was totally lost...I could not even spell gpm. I made her come into our office and had my doctor look at her to see if it could be anything else....My doctors thought we should see a ENT first...the a neurologist. So I got her into a ENT....a couple weeks went by and she lost 20 lbs in 2-3 weeks...The pains got worse, she looked terrible, felt terrible....so I went to the ENT for her follow up vist...as we were in the waiting room of the ENT office my mother had 3 attaches (with in 30 min)...At this point the ENT was clueless....I begged him to put mom in the hospital and bring ALL the doctors to HER. Her ENT did just that. That specific day I think it was something like 20 to 30 pain by 4 pm in the afternoon. While in the hospital they did a CT/MRI/ blood work...doctor after doctor came in to see her....Then the neurologist came to see her the next day.....What do you know.....My doctor was RIGHT....the neurologist confirmed it was gpn....My poor mother went through swallow studies, with food and with out, got more blood drawn and more mri/ct done than I have ever even thought about. I felt so bad for her, but I could not do a thing but be there for her. Almost forgot...during the swallow study...they told her he has gp reflux also (I think that is what they called it.)

So there is my history:

Here is my Present: Mom is back at having More and More attacks. back to not going to work due to the pains...I know she takes 2400 mg of neurotin and trileptal (not sure on the mg of it)...she just got does with 3 treatments of PAIN BLOCK....which has done NOTHING...but maybe make it worse. I asked my dr that I work for if he had anyother ideas...he was kind enough to connect me to a specialist in Columbus/2.5 hrs from my home....I spoke with him today, he was a very kind dr.....he said he would see her if i wanted to go 2.5 hours away....So I guess my question is ANY SUGGESTIONS in what to do....before we go to columbus????

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Hey Jennifer,

I'm sorry I've not written to you before now, I was back home for a couple of weeks and I work really crazy hours, so sometimes it takes me a while to be able to respond. I wish I did have some suggestions, but it sounds like you've maybe done as much as you can where you are, she's already on a good whack of neurontin, and if the pain blocks aren't even helping obviously that's not good either, I think they're a lot quicker to offer them in the US, I've had this for 4 years, and my pain specialist herself said she would never dream of performing that procedure!

I wish I could offer you some pearls of wisdom, or advice but all I can say is that; if there's another doctor who might be able to help her and is willing to see her, my advice would be to make the appointment and go if it's at all possible. I wish you both all the best with it and I really hope the pain eases for your mum soon.xxx

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Strange how this is supposedly so rare, yet I think that since I have been diagnosed, I know two other people with TN. Similar but worse they say. It is actually nicknamed the “suicide disease”. BTW, do you refer to GPN as a “condition” or a “disease”. I don’t know how to label it.

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TN is rare, and GPN even more so, generally GPN is viewed as not being as painful a condition, because the attacks dont tend to come as often, some folks have one attack and it may never return, a lot of us here know otherwise, the electric shock of a classic attack is the same, irrespective of if the nerve that is being affected.

How do I refer to this? Generally neither, it's "spaztastica" in my house.

Much love

Gracie x x x

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Gee, I wish I could have lost 20 - 30 pounds with this affliction! Sorry, I couldn't help myself.

In all seriousness, I've heard this is at times difficult to diagnose. My pain has basically centered around my right ear, and sometimes throat area too. I was on Gabapentin 2,700 mg a day. And it helped. Made me tired, but it helped.

I, too, went to an ENT, who ordered a CATSCAN, and then to a neuro who ordered an MRI. I also had blood workup. Nothing remarkable. So this all started Nov 2010, and I have not had too much pain in the last couple of months. Am off meds at the moment, but heard that it can come back.

I hope your mom feels better! She may want to look into Microvascular Decompression surgery, but I've heard that comes with some heavy risks, which I was not willing to take.

Take care ~ Kara