I will do what I can to stay on track and focused.

Me before April:
25 Full time student mom of 2 little ones. overall generally healthy. i eat well exercise regularly maintain my stress. sleep 9-12 hours a night, its crazy i know ive never had problems with sleeping, only regular thing is ADHD and anxiety which i have always had and have been treated for off an on since i was 14 (no new meds)


at the end of march i had bronchitis prescribed zpac, steroids, and cough medicine. everything was fine till a week later i was doing laundry when all of a sudden i was taken to my knees with pain i cant even explain. i thought i ruptured my ear drum.
i decided to wait untill i finished the antibiotics before i went back, im not one to waste time or over react. pain didnt go away it died off but it hurt pretty bad.
I AM MAKING THE DAYS UP
Monday back to dr oh you probably have fluid behind your ear drum steroids augmentin

Friday-pain attack so bad i had to pull over and a friend had to take me home

sunday-ER said oh well it looks like you have TN here is pain medicine see a specialist

tuesday-clinic pain had not gone away it wasnt horrid but it had me on the couch- you have an ear infection here is some 200$ ear drops

2 weeks went by untill i had had enough i made a drs appointment for any and every dr i could if i wasnt turned away i was just given ear drops.

a month passes i finally get a dr to listen to me and she sends me to ENT.
HEARING-excellent
SINUS-clear
MRI and CT-clear
go see a neurologist

NEUROLOGIST-after a 30 min argument about how i KNEW i didnt have a migraine i got sent home with migraine meds and was told to come back in 2 months.

then i got on google for days and came across "geniculate neuralgia" and when i say i cried from tears of joy i mean it. it was like i was writing up my story.
i hardly sleep any more my 'attacks" last between 24-48 hours and can be an easy one where i just eat pain meds and lay in bed with the feeling of a knife in the side of my head to severe where it comes out of nowhere and it feels like i have been shot. the past few ones have been that bad i literally just go outside and cry (so my kids dont see) when the initial screaming goes away i all but crawl back inside for some reason it blurs my eyes and i cant walk (i think that is my bodies sad way of trying to help with the pain) I went to the er a few times b/c my mom couldnt stand me crying after giving me morphine and stating my pain was still a 6 i was told i needed to see a neurosurgeon.

while in the process of getting my medical records to him my insurance was canceled they need a letter saying "i cant work or go to school" problem is i cant find a dr who will write a letter or even acknowledge the fact that GN is what i possibly have. i did find a dr who has prescribed me pain meds and gabapentin 600mg a day...which that doesnt help with the pain or preventing attacks im just fat now but it helps me to sleep so i take it.

I am at a stand still as of now and I just dont know what to do. I am getting pain meds from errrm "friends" i even tried "smoking" once and that didnt work it actually made me depressed b/c i was for sure it would help. my life is completely on hold. i had to take my kids out of gymnastics since i never know when i can drive. i never get to leave the house. i had an attack in walmart once and a total stranger brought me home b/c i refused to get in the ambulance with my kids. i am sick of not having answers i am sick of being in this pain i feel like a bear always yelling i hate the world and my catch phrase it "i want to blow the side of my head off, not die just take the pain away"

to summarize and since i cant remember what all i put between the pain, gabapentin, and pain meds i have no brains or short term memory.

but in case i didnt specify-right side severe deep ear pain, jaw pain, mastoid pain. all of these are a daily sort of thing then i have "attacks" several times a week.
ct-clear mri-clear contrast mri-clear...blood work normal...no sort of infection anywhere since bronchitis...still completely healthy except i am now wayyy over weight (bp is still excellent)

ANY HELP IDEAS THOUGHTS AN ENCOURAGING WORD PERHAPS???
i just want to know i am not alone. i am so desperate i dont know what to do

Hi singlemomstrong,

Welcome to the NeuroTalk Support Groups and I'm sorry you're dealing with such a painful condition.

Unfortunately, I can't really help you with your concerns, but I hope that someone will see your message here soon and that they can give you some information and support.

Try doing a Full Forum Search

There are some older posts.

See if this works...

http://neurotalk.psychcentral.com/se...ery=Geniculate

don't have your problem but have pain from a tbi. 600mg gabapentin is really low. I'm just starting to get relief from 1800 mgs. you can go up to 3600 and sometimes more. I don't know where you are located but a really good hospital or clinic is in order. i live in ny and am lucky enough to be near nyu, mount Sinai, etc. but please find the place in your area. good luck

I live in Houston and seriously its a joke trying to get someone to listen. I have been told its impossible i have this. Well I was down for another 30 hours and it felt like my ear was trying to kill me so I dont feel this is impossible. Someone mocked and said who said you had this diagnosis to which my reply was "its the lack of a diagnosis that points in this direction, you dont just have pain like i do without there being a cause my scans are clean ive been thoroughly checked by more than one dr" its frustrating and im just an angry person now because of the pain and i have 6 weeks before its to late to go to school this fall.

BUT We went and saw my psychiatrist (he treats my ADHD) and he upped my gabapentin to 900mg a day and said that I would probably need more thankfully he said he would help and look up to see if there is anything else he can prescribe me. thanks for the reply its a difficult time and i feel so alone

Welcome singlemomstrong.

I'm really sorry. Having pain that bad in the ear would be more than horrible.

I hope the doctor you just saw can help you out.

I don't know anything about this condition but in searching I came across information regarding treatment options besides surgery and they mentioned Tegretol and Sansert.

I guess no 1 priority in getting the correct treatment is to find a doctor who will give you a diagnosis.

http://www.upmc.com/Services/neurosu...neuralgia.aspx

http://facial-neuralgia.org/conditions/tn-ni.html
This is old, but it helped me understand what you're dealing with there.

Perhaps you could also post on the Trigeminal Neuralgia Forum

The members there would be familiar with the different neuralgias and may have some suggestions for you.