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My Trigeminal Neuralgia Story by Erin http://www.MyTrigeminalNeuralgiaStory.com/Erin/TN7.html This website is for patients with pain to journal and describe what they have occurred with their pain of trigeminal neuralgia. The more detailed they write about their pain the greater chances they have of having someone else with a similar pain help then or on the other hand for their journal to help someone else. This is a "win win" website where we all are out to help each other. As you read this site and others linked from this page in the yellow box below you will see how different each situation is and yet how much similarity there is in the patient problems. |
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Designers Box. Brian Nelson. Owner
31 Gessner Rd. , Houston, TX 77024 713-467-3025
Click: E-mail me The important words found on this site include: Misspelled words used to find this page 1 of 5. Find this site by typing in the Google search engine the very unique word "2yrotsymnirE" which is OR "Erinmystory2 " backwards. Article Word Count __________ MSW _____ 1 YouTube.com 2 Alt Tags , 3 MSW 4 Metas/Title, Keywords Description 5 BB4/FormLetter 6 BB3/NIDAS |
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| Misspelled words used to find this page 1 of 3 1aiglaruen trigemnal, trigeminal, trigemial, trigeminl, tigeminal, trgeminal, trieminal, trigminal, trigeinal, trigeminar, tligeminal, tligeminar, tr1gen1ma1, tr1gen1mal, trigenimal, trigemimal, trigeminla, trigemianl, trigemnial, trigeimnal, trigmeinal, triegminal, trgieminal, tirgeminal, rtigeminal, trigemina, rigeminal, neuralgia, nuralgia, neralgia, neualgia, neurlgia, neuragia, neuralia, neuralga, neurargia, neurargai, neulalgia, neulalgai, neulargia, neulargai, neuralgai, neura1g1a, neuralg1a, meuralgia, neuraliga, neuraglia, neurlagia, neuarlgia, nerualgia, nueralgia, enuralgia, neuralgi, euralgia, tic, tik, tick, t1c, tci, itc.douo1oreau, douoloreua, douoloraeu, douoloerau, douolroeau, douoolreau, doulooreau, doouloreau, duooloreau, oduoloreau, douolorea, douoloreu, douolorau, douoloeau, douolreau, douooreau, douloreau, dooloreau, duoloreau, ouoloreau, douoloreau, nt, tm, tn,facia, facea, faicea, facai, faicia, faicai, fasial, faisial, fatial, faitial, facial, fatail, faicair, facair, fasail, faicial, faicail, faceal, faiciar, facear, faseal, fateal, faiceal, faicear, facail, faciar, fc1a1, phc1a1, fac1a1, fac1al, facila, faical, fcaial, afcial, facil, facal, faial, fcial, acial,pain, paeign, paiegn, paen, paan, pian, paign, pane, peon, peen, piin, pyin, pien, pyen, pean, pein, pyan, pani, peni, pa1n, paim, apin, head, had, hed, heed, hiad, heda, haed, ehad, neck, nevk, enck, envk, eignck, eignvk, iegnck, iegnvk, meck, mevk, nekc, ncek, brain, blane, brane, brian, blain, blian, braeign, blaeign, braiegn, blaiegn, braen, blaen, braan, blaan, briin, bliin, brien, blien, brean, blean, brein, blein, breen, bleen, braim, briam, blaim, bliam, bra1n, brani, barin, rbain, tooth, touth, tooht, totoh, ototh, toth, ache, acze, aceh, ahce, cahe, treatment, treatent, treatmnt, treatmet, teatment, treament, tleetmiegnt, tratmiegnt, trheatmeignt, tleaitmant, tleaitmiegnt, tretmiegnt, trheaitmeignt, tlheatment, tlheatmiegnt, treetmiegnt, tleatmeignt, tlheatmant, treaitment, treaitmiegnt, tlatmeignt, tlheaitment, treaitmant, trheatmiegnt, tletmeignt, treatmeignt, trheatment, trheaitmiegnt, tleetmeignt, tratmeignt, trheatmant, tleatmiegnt, tleaitmeignt, tretmeignt, trheaitment, tlatmiegnt, tlheatmeignt, treetmeignt, trheaitmant, tletmiegnt, treatmiegnt, treaitmeignt, tleaitment, tratmant, triatmiegnt, tretmant, tratment, tliatmiegnt, treetmant, tretment, tleatmant, treetment, triatment, tlatmant, tleatment, triatmant, tletmant, tlatment, tliatment, tleetmant, tletment, tliatmant, tleetment, triatmeignt, treatmant, tliatmeignt, treatnemt, treatmemt, treatmetn, treatmnet, treatemnt, treamtent, tretament, traetment, teratment, rteatment, treatmen, reatment, cancer, censer, cancel, cencel, cansel, censel, cacer, cencer, canser, caner, canel, cainl, cainr, ceiner, ceinel, cance, cence, canse, cense, canc, cenc, cancre, camcer, canecr, cacner, cnacer, acncer, cancr, cncer, ancer,information, informatin, informatiom, infolmatiom, iformation, inormation, infrmation, infomation, inforation, informtion, informaion, informasion, infolmasion, informaton, informashun, informashon, infolmation, infolmaton, infolmashun, infolmashon, iegnfolmatiom, iegnformachun, eignfolmasion, eignformachon, iegnformaton, iegnfolmachun, eignformatiom, eignfolmachon, iegnfolmaton, iegnformashon, eignfolmatiom, eignformachun, iegnfolmashon, eignformaton, eignfolmachun, informachon, iegnformashun, eignfolmaton, eignformashon, infolmachon, iegnfolmashun, iegnformation, eignfolmashon, informachun, iegnformasion, iegnfolmation, eignformashun, infolmachun, iegnfolmasion, iegnformachon, eignfolmashun, eignformation, iegnformatiom, iegnfolmachon, eignformasion, eignfolmation, inphormashon, iegnphormation, eignphormation, inpholmashon, iegnpholmation, eignpholmation, inphormashun, iegnphormachon, eignphormachon, inpholmashun, inphormation, iegnphormachun, eignphormachun, inphormasion, inpholmation, iegnphormashon, eignphormashon, inpholmasion, inphormachon, iegnphormashun, eignphormashun, inphormatiom, inpholmachon, iegnphormasion, eignphormasion, inpholmatiom, inphormachun, iegnphormatiom, eignphormatiom, inphormaton, inpholmachun, iegnphormaton, |
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| 2 My Trigeminal Neuralgia Template | http://www.MyTrigeminalNeuralgiaStory.com/PersonalTemplate/TN2.html |
| 3 Shirley H 2004 | http://www.MyTrigeminalNeuralgiaStory.com/ShirleyH/TN3.html |
| 4 SandiW 2005 | http://www.MyTrigeminalNeuralgiaStory.com/SandiW/TN4.html Atypical Facial Pain. |
| 5 Charlotte McLaughlin 1992 | http://www.MyTrigeminalNeuralgiaStory.com/CharlotteMcLaughlin/TNPatient.html |
| 6 Molly Harker | http://www.MyTrigeminalNeuralgiaStory.com/MollyHarker/TN6.html |
| 7 Erin | http://www.MyTrigeminalNeuralgiaStory.com/Erin/TN7.html |
| 8 |
You are at: http://www.MyTrigeminalNeuralgiaStory.com/Erin/TN7.html ud 12/17/2008 03:16 AM -0600 Bookmark this page now!
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7 Erin
10-1-08
Brian, Here's my story from the beginnings through to today. It helped me to write it out. Thanks for giving me a reason to do so.
I am a 30 year-old woman, married 8 years, dated him 4 years
prior to that. We have a 7 year-old son, and 2 year-old boy/girl twins. My
husband is in his senior year at University and about to enter grad school.
My journey with TN began sometime in early 2006. I started noticing flashes
of pain in the left, lower portion of my face, along my jaw. I didn't have
insurance, so I didn't seek treatment for what I thought was a toothache. I
tried to be very caring of my teeth, and hoped that would be enough. By early
October, however, the pain was constant enough and intense enough that my
husband and I decided I should see a dentist.
My dentist found an offending tooth, cracking around an old
filling, and he capped it. Since I didn't have insurance he even knocked off
60% of the bill. I left the dentist office numb and happy, and has the numb
wore off, I was less and less happy, ultimately screaming in a ball on my
couch. My husband called the dentist back and he got me in first thing the
next morning for an emergency root canal. However, this time around, he
couldn't get me anywhere near completely numb. I told him to try for the
procedure, I'd hang tough as long as I could. We made it about half-way
through when he just decided he couldn't hurt someone this badly anymore. The
dentist sent me home with a couple of pills to take before the next attempt at
a root canal - the pills were to knock me out and leave me with no memory of
the procedure. I'm told that pretty much as soon as he started working on the
"bad tooth" I came out of the chair. My poor dentist, at this point, sent me
home with a very strong dose of those pills and three days off between
attempts, hoping to let inflammation die down I took the pills, went in for a
root canal, and again came out of the chair as soon as he tried to work on the
tooth. At this point, after I went home and woke up, I decided to just pull
the stupid tooth. My dentist didn't disagree, but wanted me "out" for that
procedure too. So once more I took the sleepy pills, went in, passed
out....and had to be restrained while he pulled the tooth. The roots all
looked healthy.
At this point I had a chat with my dentists, where we tried
to carefully draw on paper the areas that where painful to me, and for me to
write down the kind of pain sensation I felt. The two dentists left the room
a moment and returned with a referral to a local neurologist. They told me
they suspected I had something called Trigeminal Neuralgia and that without
treatment for that, any dental procedure would likely affect me this way,
while leaving me no better off. The root canal was probably a "red herring"
sending us chasing after a symptom rather than the cause. So, I made the
appointment with the neurologists for a few weeks out.
Those were pain-filled, scary weeks for me. As much as I
was able, I researched TN. I found a lot of "Hey, we do surgery!" sites and a
lot of "Hey! We can toss drugs at you but that's about all we got as cures
go" sites. I found a disappointingly few sites devoted to the patients and
their coping mechanisms that just got them through a day, which was the real
purpose behind my search. In a word, I was discouraged. I ordered th TN
Bible, "Striking Back." It didn't' arrive before my neurology appointment.
So I walked into my small-town doctor's office and shared a waiting room with
five others, all over retirement age, by my guess, and felt out of place.
But the nurse who called me back was energetic and
sympathetic without being false and seemed to have caught my broadcast of
"HOPELESSNESS" loud and clear. In between taking my temperature and blood
pressure and getting my history she got the story of how that beautiful scarf
she had commented on is actually three times the average width, knit for me by
my mom, so I could cover almost my entire face to walk from my house to my
car, from my car to the store. How very small my diet had become, on some
days nonexistent. How I had worked with my husband to have certain signals
that on a bad day are our means of communicating. How I wasn't doing cub
scout den mom this year or building snow men with my three kids. How many
days it was sometimes between one shower and the next, one tooth brushing and
the next, and she seemed to care, which was like a gift.
Then Dr K, whom I had seen before just to get the right
migraine medication going, walked in and he seemed to care too - to a point.
And that has become my biggest frustration. He was nice about it but I was an
anomaly. He had all these theories about how I had ended up with TN so young
(earlier that year I'd delivered twins, but it was a physically difficult
pregnancy which required surgical intervention, and then I almost died during
the C-section- "Major Physical Trauma" according to Dr K). Anyway, either
way, diagnosed is what I was, and I was off to have an MRI we'd pray was
negative. It was.
I went home with samples of Lyrica, which I started taking
at the low dose recommended. Three nights later I "woke" up in what I guess
was a dreaming state and thought my husband was there to harm my kids and
myself. I drew a knife on him. He stayed remarkably calm but it was several
hours before I started to understand the thoughts running through my head had
nothing to do with reality. and then I just slumped back and fell asleep.
Hubby called Dr K the next day and asked that he try a different medication.
I was put on Tegretol, worked up to 800mg each day, still having symptoms.
Dr. K added Neurontin, 1800mg a day. He also told me if the pain became
unbearable, seek treatment in an Emergency Room.
I have done that, maybe four times, over the last year.
After the first time it became something I resist until I simply get too
caught up in the pain to resist my husband's concern any longer. I was
treated so poorly. We live in a rural community. They literally had to go
Google "trigeminal neuralgia" to find any information on it for the doctor.
Yet they treated me like a junky the entire time. The nurses were at best,
condescending and at worst, cruel. The doctor never tried to hide his
bafflement that he was facing such pain without any way to make it be known -
MRI, CAT, blood work, obvious injury, SOMETHING! I occasional have made the
choice that fighting this pain without a break is at the moment worse than
facing such treatment, but they always treat me like I'm an annoyance to them,
and they begrudge the care they give. At those moments, beaten by the pain
into doing something I truly hate doing, I feel completely powerless and
humiliated.
I have maybe a week at most, sometimes, for no good reason,
that is pain free. I love them and want to find the pattern to them! For the
most part though, it's good, bad, or plain old nasty days that I have. I fear
a lot of things, but I find myself fearing the return of the pain by large
distinction more than anything else. Sometimes I think, "I'm allowing myself
to NOT enjoy being pain-free because I'm so busy being terrified of when and
how hard the next strike will come."
I am locked in my house. I'm afraid to drive, afraid of the
wind (and warm or cold, we always have some here), afraid of hugs or kisses,
afraid to play with my babies (they hit my face so often, or just stroke it in
love), afraid to cook or do dishes (heat hurts), afraid of showers, pull-over
shirts, sex, meeting new people who will think I'm a freak if this shows up
five seconds after we're introduced. I'm afraid of what I've done to my
marriage, changing into this cringing, scared woman when I used to be anything
but - and I know my strength and adventure and up-for-anything attitude was
one of the things my husband loved most about me. I'm afraid my kids are
being taught to hide out in fear of what could be. But I can't change that.
Because more than I'm afraid of those things, I'm afraid of the PAIN.
At first, I knew I could handle it. I knew it was going to
be BAD, boys n girls, but I could and would handle this. I'd adjust a few
activities to suit it better and off we'd go. No such thing. After all, I'd
been through pain that blew my doctors' minds when they realized I was just
handling it, but it really was that bad. I was TOUGH. I've been hurt and
injured, inside and out, I went through organ death that was nearly overlooked
because any patient as clear-headed as me could not be experiencing such a
thing. I was a bad momma, tough and willing to take what got thrown her way,
then deal with it and get the heck past it. It wasn't my main point of pride,
it was something I'd decided had to be a part of me in order for my family to
live the way we want to.
Until TN, I didn't think there was anything that COULD make
me panic. I didn't think fear could own me completely, so completely it stole
my thinking self away and hid it tight. But here I am, in my house again
today, not having stepped out my door because the air is cold. In addition to
the fear is the shame, which has roots in everything. My kids, what they see
and learn because of the new me, my man and what it must make him feel, shame
every time someone else is present to witness how the pain takes me over when
it hits so that I can't remember to breathe or think or even count to ten.
Shame at how angry I'm becoming over all of it. I'm not angry at anyone but
myself and the TN, like it was another person and we are struggling for
control over ME, my self.
Dr K has been completely unhelpful pretty much. The last
time we met I asked him if I needed to see someone who knew more of treating
TN, and he agreed that he was "out of tricks" whatever that meant. He old me
he'd find someone on the coast to refer me to (I live on the Idaho/Washington
boarder, lots of small towns, for big things we hit the coast). That was in
July. I never heard back from him.
Today is day 19 of the worst strike yet. I'm not holding up
well. The pain becomes worse the longer I am up but it's also starting to
wake me so I haven't slept soundly in days, which eats at my coping skills. I
finally called Dr K back and asked for that referral. He called back and
offered me another Medrol Dose Pack (his favorite tool) and said he would
contact a Dr C with UW in Seattle, get that process rolling. I don't even
know what that process is. I'm having panic attacks these last few days.
Told him that. It was a problem once before that I got hold of through
biofeedback and meditation, but I can't focus that well this time around. He
wished me good luck.
My general doctor's nurse called today following-up on
something else (I herniated two discs in my back and tore a tendon in my right
knee falling due to clumsiness brought on by meds, fun fun). I was kind of a
wreck when she called so my gp ordered a few Lorazapam - can you say
embarrassed??! But I'm not holding up as well as I wish I were and my pride
needs to take a backseat to surviving right now. When I get very worked up
and very panicked and very fearful and the attacks just keep coming and coming
the thing that comes to my mind is "Just cut it out of your face, Erin. It'll
stop." I work with straight razors as a cosmetologist and I've gone through
how I'd heat it first to clean it and wear gloves and the whole thing. I
don't think it's something I WANT to do, I think it's something that helps me
when I need to feel defiant. But a few months ago I could have said so with
certainty, and now all I can do is "I think." I don't know what this means,
what the consequences would be, but I often feel like just letting to go it,
letting the pain take me. The pain comes anyway, why waste the energy
fighting it? But I don't know what would happen if I did that, I'm just
pretty sure it's not something I would want for my family. So I haven't. But
tomorrow the temptation will start again. Someday I will probably lose that
fight.
So, that's where I am. It actually felt purging to just say
it to someone start to finish. If you want to contact me, please do so.
Erin
(509) 995-3009
Spokane, WA
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ERIN'S UPDATE 12-16-08
Brian,
Hello. I read the post, and just started crying. The thing
is, in the time since I heard from you last, I did give in to temptation, in a
way. I took that razor and tried to slit my wrists. My husband suspected I
was up to something, and ultimately he got the razor away and hospitalized
me. A few weeks later, I was in Seattle, having a microvascular
decompression. I had complications, started having seizures, directly
afterward. We got those under control and I came home, only to be flown back
on November 29 because I had a cranial spinal fluid leak (CSF). I ended up
with a lumbar drain, and having the original surgical site re-opened, fat
taken from my belly to plug the leak, and home on December 9th. On the 12th I
was hospitalized with a fever, had a lumbar puncture and blood cultures done,
but I'm home again (hopefully for good!) as I have an infection but it isn't
meningitis. The fantastic news? NO TN PAIN since the first operation!!!!
That was November 13th, so it's been more than a month. I'm cautiously
optimistic, but find myself still afraid the pain will return. I hate that
even without TN pain for a month after surgery I still wait for it to hit when
I step outside or brush my teeth, but I'm sure this will improve with time.
In my search for information on TN I met some amazing
people. I'm still in contact with them, and I'm determined they will know
they are not alone, and that there is hope.
This disease has made me feel so
isolated and driven me to do attempt suicide - if I can help one person
through those despairing moments and keep them in the fight long enough to
find a solution, I will do so. Thank you for giving me a place to tell
this story and reach out to others who understand it - more than anything,
knowing I wasn't alone in this gave me hope enough to pursue surgery, and
gives me hope still as I try to rebuild the life I had before TN took over.
May this find you well,
Erin
(509) 995-3009
Spokane, WA 12-16-08
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Definitions of Trigeminal Neuralgia
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