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.

Thanks, I have gone though almost every single page on google about it. I even used my schools research database.
I asked my Dr about the Tegertol he said the Gabapentin was the better way to go but if i dont have relief after he bumps it up again ill ask for the tegertol.

and i am not opposed to surgery. If i could pack my bag right now and get it I would I am not afraid in the least bit. This has taken away everything I love...school, church, play dates, babysitting, running, reading, the sound of my kids laughing hurts some days I am ready to get on with my life. I know the surgery only lasts about 5 years but i would rather that than take medicine that makes me gain weight or risk changing with side effects. I battle with ridiculous depression and taking the risk of a medicine making me worse no thank you...a crazy mind is the only thing i hate worse than ear pain. If i had consistent help with my kids it wouldnt be as bad but when i am curled up in the closet hiding so they dont see me cry i feel worse. I want/need the surgery not only for me to be pain free but so my kids will stop suffering as well.

single mom.... I believe I can offer some good insight for you...

I have been dx'd with Atypical Trigeminal Neuralgia following dental work.

However, the majority of my pain is in my ear.

This is something that my neuro doesn't seem to understand, so at times, I'm afraid to discuss it too much.

Yet, ironically, when I communicate with others with ATN, bad ear pain is often mentioned.

I went to an ENT and he thought I had some dental or bite problem. It really bothered me. I went back to him later, when I had some weird pain on the same side in my nostril and he did a CT scan. After the scan and nothing was found, he said it was probably ATN and it had spread into my nostril.

If you look at a photo of the Trigeminal nerve and the related branches it goes from the jaw, ear, up into the face, nostril and even around the eye area. It's as if it has "fingers."

Anyway, my neuro, who is very knowledgeable, doesn't seem to know about Geniculate Neuralgia much. I don't think it is seen much.

BUT, I'm on a compounded cream with Gabapentin, Capsaicin and Lidocaine and it has helped me tremendously....I still have triggers and issues...but they are much better. I rub it around my ear, on the side of my face and a little into my jaw area where the dental work was done.

***Go to www.livingwithtn.org. There they discuss all of this, BUT they also have a separate area for Geniculate Neuralgia!
My MRI never showed anything, and the neuro even looked for what would be indicative of GN, but the MRI was all clear.

Wishing you well...I know it is very hard.

**

but just an update...i have had no progress...i saw a pain managment dr and he basically said he couldnt help. I am hopefully meeting with the neuroseurgon tomorrow...something happened with the insurance and i might not be seen. I have been online all day today trying to find help and i have pretty much come up with nothing. I have also looked up every possible thing that could cause ear pain and nothing fits. my symptoms are just crystal clear specific ...hopefully this dr will be of some help. I dont really have a primary dr either pain meds for me of any sort is just not an option.

Any of these types of illnesses require a careful and sometimes long process of being followed by a doctor who will observe, listen to and record your symptoms.
And of course, it is hard, if not impossible, to,get good treatment without the proper diagnosis. You might have regular TRigeminal Neuralgia, as many people with TN, also have ear pain. GN, sounds like a possibility too. It is important that you try to get your insurance situation straightened out. Usually, the meds are started on a low dosage and worked upward. Also, a med like Elavil might be a good choice to add to the Gabapentin. Many people with these health problems get some relief from it and it is also an antidepressant.

Does heat, like from a heating bad help you at all? Is your ear fine and then suddenly you have bad pain?

The surgeries for TN or GN are major surgeries. No way would any doctor even discuss this without first getting a handle on your dx, testing and trying various medications. You might need another MRI.

Again, getting your health insurance straightened out is very important.

Consider contacting the Facial Pain Association inGainesville, Florida for some more ideas.

If you haven't done so already, please check out the website www.livingwithtn.org