Author Topic: New here. Has anyone had anything like this happen?  (Read 5524 times)

RNunderconstruction

  • Newbie
  • *
  • Posts: 1
New here. Has anyone had anything like this happen?
« on: May 24, 2014, 04:35:24 pm »
Hi everyone. I'm new here. I don't have an actual diagnosis because I can't get an MRI approved.

About 10 years ago I was stuck down with horrible face/head pain, ringing in my ears,and balance issues....it was debilitating. I was nonfunctional. They symptoms would come in episodes that could last any where from a week to six weeks. After battle with the local neurology clinic for a first time appointment they finally scheduled me for an MRI. It showed nothing. The neurologist threw a cocktail of medication at me and called it atypical trigeminal neuralgia. Years went by with a few episodes here and there but for the post part I could keep the pain in check with gabapentin. The only pain that remained was the constant feeling that comes at the start of an ear infection. I've learned to live with it. About a year ago my insurance switched and I was forced to switch to a new neuro (a blessing). The doctor questioned the diagnosis of atypical trigeminal neuralgia. He wondered if it could be an acoustic neuroma. He told me my insurance was not known for approving MRIs but he would try. Of course I was denied. They said I had been stable for many years and there was no need or one unless symptoms increase or change.

That is what leads me here. On Friday I was woke up at 4 am by cats in my backyard fighting. It startled me and I sort of flew out of bed. I quickly realized I had a horrible headache and I was VERY off balance. I assumed it was a weird migraine. I took some meds and headed back to bed. When I woke up at 7:30 my headache was almost gone but my balance was worse. I could barely walk a straight line. I'm in nursing school which doesn't allow for you to be sick so I decided in needed to power through. I headed for the shower. Once I hit the shower the vertigo set in. I could not move without my world spinning. I had to sit down in the shower a dozen times just to get the shampoo out of my hair. I got out of the shower, called my mom to take me to urgent care. Once at urgent care the vomiting started (because of the vertigo).

The doctor dx me with vestibular neuritis. Basically inflammation of CN 8.

I'm wondering if this could actually be related to the suspected acoustic neuroma instead. I plan to call the neuro on Monday, but was wondering if anyone else had a similar thing happen to them.

TIA.



bethtretrault

  • Jr. Member
  • **
  • Posts: 99
Re: New here. Has anyone had anything like this happen?
« Reply #1 on: May 27, 2014, 03:37:41 pm »
Wow.  That sounds terrible.  I do have an AN but I also have BPPV in the other ear.  The vertigo could be caused by that. Sounds like you need to see a specialist ENT - neurotologist (I think that's how it is spelled).
beth
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015

MG

  • Full Member
  • ***
  • Posts: 178
Re: New here. Has anyone had anything like this happen?
« Reply #2 on: June 01, 2014, 05:09:34 am »
HI, so sorry about your vertigo! I think you better get to the ENT and have a MRI with contrast. Have you had one yet? It the way to tell for sure if you have a tumor. Even though you may not have insurance,(which I don't) pay out of pocket. You need to find out what's going on.

Take care and Best wishes,
MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

Worriedandconfused

  • New Member
  • *
  • Posts: 6
Re: New here. Has anyone had anything like this happen?
« Reply #3 on: July 14, 2014, 04:22:31 pm »
Hello,

I had a similar experience. About 2 months ago I was diagnosed with Vestibular Neuritis, I woke in the middle of the night with extreme vertigo and vomiting. It was so severe I thought I was having a stroke or something. I have never been so scared in my life, I felt like I was dying. An emergency room doctor diagnosed me with Vestibular Neuritis and my symptoms resolved after 2 weeks, although only the first few days I was unable to move without vomiting.

I work in a medical office and the doctor I work for suggested an MRI. The first was done without contrast but showed "slight prominence of the nerve" and suggested a second MRI with gadolinium. I just got the results today. It shows a very small Acoustic Schwannoma/Neuroma. 4x2x4mm. I have been a mess all day.

What I'm wondering is...Vestibular Neuritis is an inflammation of the vestibular nerve. If this "neuroma" is so small, could it not just be the swelling? I have no hearing loss and my VN symptoms have resolved.

I am 25 and also in Nursing school..

johndoson

  • Newbie
  • *
  • Posts: 2
Re: New here. Has anyone had anything like this happen?
« Reply #4 on: August 19, 2014, 03:34:26 am »

Reading this post I'm not really up on the vast knowledge. The knowledge of the other's position.

jaylogs

  • Administrator
  • Hero Member
  • *****
  • Posts: 836
  • It's NOT a too-mah! (Anymore!)
Re: New here. Has anyone had anything like this happen?
« Reply #5 on: August 19, 2014, 08:11:39 pm »
Hi Tia, so sorry you've been suffering with all this for so long!  I know insurances can, well...to put it bluntly...suck, but for yours to deny coverage is just crazy!  There are many different kinds of tests out there that can point to a possible AN, but THE only way to positively ID one is with and MRI w/contrast.  And the nature of these beasties in our heads dictate that there's absolutely no textbook symptom that says "Yes, you have AN!!" In fact, there's been a lot of people that have come through here who have had ALL the symptoms of an AN, was absolutely sure they had it but were waiting for their results of the MRI's. And lo and behold, no AN...So, to ultimately answer your question...it's possible you do have AN, but it's just as possible you don't.  Whatever you may or may not have, it's definitely something that needs to be addressed so I hope at least that will be done sooner rather than later.  Good luck and keep us updated!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston