Seizures and Trigeminal Neuralgia

[meaghan38301]

I am a 35 year old female.  In early 2012 I thought I had a toothache due to shooting and burning pain so I called the dentist and went on a round of antibiotics and the pain left eventually.  About a month later I had a burning pain in my ear and it felt as if my eardrum burst but when I had someone look inside, they said it was fine.  I then had a lot of vertigo and dizziness.  About a month after that the pain in my jaw had stayed away but I started getting a constant ringing in my right ear which is still going on today and now it's in my left as well.  I started getting a shooting, stabbing pain in my right chest.  The pain was intermittent and was in the soft tissue, not my actual breast, just right beside my armpit, extremely hard to pinpoint and I thought it was a lymph node. I went to the ER and was told there was nothing wrong, they gave me a heavy narcotic shot and sent me home, the shot did not touch the stabbing, burning pain.  But just as I was coping with this intermittent pain in my chest, I then started having seizures.  The first one happened in the middle of the night, they only last less than a minute, but I did not lost awareness, I just could not respond.  I could hear the ER attendants making fun of me as they asked if I was having a BM.  CT Scan, MRI, and EEG all yielded nothing "remarkable."  Scattered white spots on my brain "considered normal."  A neuro psychiatrist came in and told my family I was having fake seizures but put me on Keppra which in turn made things worse and also made me suicidal.  They allowed me to take home a script for Ativan, which I still take .5 if I start getting a seizure.  I have no insurance, cannot get Obama Care, cannot get medicaid.  I turned to diet choices, gave up all aspartame, gave up gluten, quit smoking all to no avail.  My middle back bothers me a lot, I feel like something is rubbing together when I bend over, and I get a nerve pinch.  Now, when I get a seizure it happens at night when for a while they would go on during the day, but not in my sleep.  It usually starts with my right leg twitching and runs up and hits my whole body.  I have trouble speaking afterward and say "Shhh."  I get them in clusters still.  Sometimes 2 or 3 or more, till the ativan calms it down.  The facial pain came back 3 weeks ago, it hits into my eyes, my teeth, the fleshy part of my ear and sometimes I get switches on to the right side as well but not as painful as the left. I have no control over it.There is a numb spot on the left side of my nose that comes and goes.  I also smelled a burning odor one day but it wasn't real.  The other night I started having "normal" seizures for me, but afterward I could not talk at all, had rapid blinking eyes, staring to the left and breathing problems, this went on for 2 hours and the medicine was not working like it should.  Seizures started again and my husband called EMS.  Went to hospital and they ran a CT scan and told me it would be normal before he ran it, ran more bloodwork and informed me it would be normal too.  Discharged me with myoclonus paperwork and told me I am not having seizures.  I called my regular doctor who sees low income patients and he immediately threw me under the crazy bus, even though just the other day he wanted me to get an MRI to confirm Trigeminal Neuralgia and rule out Multiple Sclerosis.  So, here I sit with the stabbing pain in my face and the pain in my right chest has returned and when I told him about that he laughed it off and basically said I have a personality disorder, which is beginning to not be funny anymore.  He also told me that I needed to add gluten back into my diet, because I don't have a problem with it.  So, I started adding it back.  Hopefully he will get me back in somehow to get another updated MRI and a LP but I haven't brought that up out of fear he will laugh at me.  Can anyone please help me connect the dots.  I have cut caffeine and been on a pretty strict diet lately because of being gluten free, I weigh 166 which is still over weight for someone who is 5'4".  He asked me about stress and I was pretty stressed after our phone call but guess what I didn't have a seizure!  So, go figure.  I wish I could get on the show Mystery Diagnosis. Thank you for reading this, I know it is alot to process but I also know it's better to have a longer history.  Oh, and as a child I had migraines and I still get headaches but they are different since the eye pain, they don't go away after taking a nap.  Any constructive comments would be appreciated.

[Invida]

Hi.

I'm sorry that I don't have any helpful information for you, I just wanted to say that I hope someone will.

[Dre702]

Thank you, I hope the best for you as well.

[GinaReneeT]

Your story is almost exactly the same as mine.  I’d like to know how you are and what your diagnoses is.  I’m having a hard time getting a real diagnosis and functioning daily.

Gina

[SouthrnComfort7]

I am having similar problems which is how I found your letter. I started having seizures about six years ago. Inever had them until  was 27 and they have gotten more frequent. Recently I went to the er because the pain in my face and left ear was unbeliveable. It made me think I was going crazybecause it moved and would completly stop and come back, I also go to a low income doctor because I have no insurance. He dose not care it seems.If you find any connection with these would you please email me at ***@**** . Thank you

[beechristy]

Meaghan, I hope you receive this message. We are practically neighbors! I live near Jacks Creek (38340). I am experiencing the same thing you have been experiencing. Had the CT, MRI, Dentist, Maxifacial Surgeon. I am so glad I found you! Pain in my Jaw, Ear, Gums and burning in my nostril. It has a name..Trigeminal Neuralgia and it is seizures of the facial nerves. Look me up on Facebook, Bee Christy. You are not crazy and you are definitely not alone.

[beechristy]

Meaghan, I hope you receive this message. We are practically neighbors! I live near Jacks Creek (38340). I am experiencing the same thing you have been experiencing. Had the CT, MRI, Dentist, Maxifacial Surgeon. I am so glad I found you! Pain in my Jaw, Ear, Gums and burning in my nostril. It has a name..Trigeminal Neuralgia and it is seizures of the facial nerves. Look me up on Facebook, Bee Christy. You are not crazy and you are definitely not alone.

[Greeny17]

Funsional nuroloaigal disorder

[Greeny17]

Look into FND to

[Greeny17]

Look in to tmj

[Hyyeary99]

That’s the worse thing you can say to someone who experiences trigeminal neuralgia.

[Hyyeary99]

That’s the worse thing you can say to someone who experiences trigeminal neuralgia.

[Greeny17]

Hi iv had the something happen to me worse thing is that they act like your crazy for me that hurt me the most iv beeing research tn and this looks like it may be the course I'm still undergoing incesturgarion but iv had to go in to my saving to she someone pritve. As nah things it's all physiogical. I know was you feel and I know it hard you need to find a doctor that understands have they looked into this like chiri melformadion that also with the tn may course things like this stay strong I know it's hard hugs and kisses

[meaghan38301]

An MRI revealed cervical spinal stenosis but I still don't know it that is what might be causing all of my symptoms.  MRI of my brain revealed white spots that the doctor attributed to migraines.  I am dealing with constant back pain now.  The trigeminal neuralgia has also been confirmed but again, I cannot know if that is also due to the problem in my neck.  No one has even gotten on this feed and I am updating it because one person sent me a note.  Thank you Marian.

[Dre702]

Hello I just found this website and hope I can learn something from it. I am 46 and had a grand mal seizure for the 1st time. ER tests gave no info. I have had alot of head injuries from when I was married to a cop. I spend alot of time alone and am worried if it happens again it could be worse. The Dr's in the ER were convinced I was on drugs until they got my results back. I had bitten my tongue quite badly on both sides and I can barely talk. I hope we can find answers together. I dont know if this matters or not but I was recently diagnosed with stage 3 melanoma. Hope to get with you soon. Thank you