i hope the pain i am feeling today is as bad as this tn gets ... i am on gabapentin 600 mg, 2 tablets, four times a day and i take oxycodone that doesn't work, so why do i take it ... i just become constipated ... it in nice to have a place to come to and vent ... i don't want to continue to "cry" to my friends and family ... besides, i don't think they truly understand what i am going through, where as you all do
There are a couple of postings here that you can have family and friends read so they WILL understand.
And of course always come here .....what other meds have you tried? Any proceedures? What type of TN?
i was fortunate to be diagnosed correctly, early on ... i was diagnosed with tn back in the summer of 2003 ... at first i had type 2 ... i was placed on gabapentin ... last year i started getting the jolts of pain, very sporadic ... this year the jolts were more frequent ... doc had me try three, maybe four other drugs (one at a time) along with the gabapentin ... when they did not work, he referred me to a neurosurgeon for gamma knife ... i had the gamma knife April 6 ... it is a month later and the pain is worse ... i have a follow up May 17 ... on another note, when i spoke to the neurosurgeon about the pain prior to the surgery, his comment was that he did not prescribe medication, i needed to see my neurologist or pcp ... my pcp wrote me a script for the oxycodone 10
I’d like to start by saying I completely understand! I had an mvd in oct last year and its made no difference if anything I winder if it’s made things worse! I have found lyrica an amazing drug and it helps keep things at bay, when I have break through pain oxycontin 20mg and endone are my savior! I don’t think anyone can truly understand unless they’ve lived with it! I hope your week gets better x
Rebecca said:
i was fortunate to be diagnosed correctly, early on … i was diagnosed with tn back in the summer of 2003 … at first i had type 2 … i was placed on gabapentin … last year i started getting the jolts of pain, very sporadic … this year the jolts were more frequent … doc had me try three, maybe four other drugs (one at a time) along with the gabapentin … when they did not work, he referred me to a neurosurgeon for gamma knife … i had the gamma knife April 6 … it is a month later and the pain is worse … i have a follow up May 17 … on another note, when i spoke to the neurosurgeon about the pain prior to the surgery, his comment was that he did not prescribe medication, i needed to see my neurologist or pcp … my pcp wrote me a script for the oxycodone 10
the pain is still horrendous ... how long do these sessions last ... a week, two weeks, a month ?
i tried the lyrica and was not able to tolerate it ... i stayed on it for a month
I sure understand where you are at. On the top of this page go to the Face Pain Info and Resources. There are a few things you will find there you could ask your family to read. Once I did that myself, I had a HUGE weight lifted off, did not feel so alone, which was really causing me to be depressed. This site is awesome for support and resources, but nothing can replace your family.
BLessings I will be praying for some relief for you.
Heather
the phone rings, barely able to speak, i answer the phone ... it was the oncologist office ... they called me to reschedule my follow up for May 17 ...* i saw an oncologist & neurosurgeon for my gamma knife ... she asked me how i was feeling and i told her, worse ... then i asked, what happens next ... she said they refer me back to my neurologist ... i told her i called his office today and asked for a medication i saw listed in the support group (baclofen) ... my neurologist office has yet to return my call ... hopefully tomorrow ... so, next Wednesday, the 16th, i see my oncologist and neurosurgeon and i tell them i am feeling worse and then i get to see my neurologist again ... back to square one ...
thank you for the prayers blueeyedgirl
* i neglected to mention i also saw an oncologist in previous post
i was rinsing some grapes for my husband ... i popped one into my mouth ... when i bit down on it there was a searing pain that radiated from my mouth up to my eye ... it lasted a long time ... it even made my eye tear ... i have never felt pain like that !!! ... it felt like someone took a hot poker from a fire and placed it on my face ... OMG ... i know a lot of you have probably experienced pain like this but it is new to me ... i had a small pity party for myself and cried a short time ... even that hurts ... shrugs ... i called my pharmacy before they closed and my neurologist did not call in the medication i asked for ... i have been with this doctor since 2003 and i dont think he really "gets it" ... i mean the pain i am in when i say, gets it ... maybe i should do some research and find a neurologist who has treated several TN patients ... right now my jaw hurts, a dull ache ... when i recieved that sharp pain earlier, my chest tensed up and my left arm went numb ... i want to go cry again ... BBL group
I'm sorry you are having to deal with this.
I don't have much to offer you, other than one thing that I really struggle with. I've found on my worst days that I find myself thinking "There's no way I can go on for very long like this," and it seems like everything keeps getting worse in those moments.
However, if I somehow take the opposite approach, literally telling myself "I can deal with this much pain right now," and in the next moment, "I can deal with this much pain right now," I'm able to better navigate those periods of time in which the world stops and everything goes away but you, inside your head, facing it.
In other words, I can get through those really bad times a little bit better if I focus on it moment by moment, as opposed to thinking long term.
that makes sense wrigley ...
i have been thinking about how my quality of life will be
instead of living in the moment ... just focus on the moment ... i hope i can do that
R/
Rebecca