Hello,
I haven't been on here in a while. We just settled after our move to FL. These past few weeks I have weened off baclofen, norco and benadryl for migraine/fibro issues due to running out of meds while I hunt for a new primary doc as well as an increase in unwanted side effects. These past three weeks I have noticed ear pain developing again but thought just maybe it was due to sinus infections that I cannot seem to get cleared up.
Well today- I lost hearing in my left ear, yet a loud ringing remianed. My husband immediatley drove me to the hospital and upon a sensory exam by the PA I was told I have trigeminal neuralgia... Uh, duh! I told him prior to the exam. Anyways, while I was sitting there the left side of my face at the II nerve branch contracted and tingled and for about 10 mins I looked like I was snarling. I was given an immediate apt with a neurologist in the morning. Within the last few hours my hearing has returned at about 90%.
Here are some of my abnormalities:
-TN attacks only every few weeks
-White foci spots seen on my recent brain MRI
-body tremors
-Frequent akathisia side effect to most meds
-Paradoxical reactions to other meds
-Sensory processing issues
-Complex chronic migraines
Any thoughts....??
Thanks, and prayers to you...
Outright acute hearing loss is unusual as a presenting symptom of TN or its close cousin "Nervus Intermedius Neuralgia" which tends to produce icepick pain in the ear. One other issue to be investigated is hemifacial spasm due to vascular compressions of a cranial nerve other than the trigeminal system (8th cranial nerve? I forget exactly).
The white foci spots are a horse of a different color. You'll need authoritative interpretation of the imagery by a radiologist. Calcium deposits in the brain can present this way, and the causes of such deposits are not always easy to assign.
By "akathisia" do you mean something closely akin to restless leg syndrome? Combined with other body tremors, I would think that a neurologist would want to work you up for possible Parkinsons Disease, in addition to evaluating for medication hypersensitivities.
For whatever this is worth, you're far from alone on this site in having odd or hyper reactions to medications. We must have over a hundred members among the 2300+ of us, who deal with similar issues.
FYI: from my incoming email, it would appear that you made this posting three times. You might want to go back and remove anything that simply duplicates...
Regards and best,
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Hello Red,
Thank you for your reply. I apologize for the multiple post- stupid tech glitch on my end, I fixed it immediately after I posted. I think I typed in a daze earlier- I meant to add that the white spots are micro-vascualr damage in random pattern through out. I was told that it "could be" from my complex migraines and/or mini-strokes, but that my age probably removes the stroke concern, hhhmm...
As far as the akathisia is concerned- it is listed as a possible condition that develops after use of compazine- well, I get it with compazine as well as with twenty other meds that are now on a black box list I keep in my purse.
I have had all the issues develop over the past six years. The only new symptoms are hearing loss, which as of this evening started going in and out again, and as of a few days ago- phantom smells. I am now randomly smelling cigarettes. This odd condition is known as "phantosmia"... Is it too far of a stretch to demand a consideration of MS and request the testing for it. The restlessness and body spasms that have increased the past week are only calmed with baclofen. I wish I could explain how bad the spasms are- it is like RLS but in the WHOLE body, even my ab muscles... It is driving me crazy.
Thank you for your reply and advice. Take Care :), Emily
Greetings bhamilton320,
Your sudden loss of hearing caught my eye. I have sudden loss of hearing that comes and goes from 20% to 70% in the ear opposite of my tn side along with loud humming (most of the time both ears) and occasional ringing, and dizzy spells from mild a couple times aday to an occasional bad spell that requires laying down for hours. They are now checking for meniere's disease. I have had this happen before I was taking any meds for tn. I don't have any ear pain but it can be very annoying. We don't know if there is any connection to tn or not.
Scott
Thanks for the reply Scott!
I didn't think of that, even though I have taken care of people with that in the past. Seems like sometimes the obvious is overlooked by people with complex issues. I will ask the doc about it tomorrow. I know when this TN first set in back last summer, I did have my hearing measured by an audio technologist and it was excellent and high pitched noises actually stopped the pain. Now it is opposite- I can tell my hearing is reduced and the noises hurt...go figure! I have always had the ears of a bat so you can imagine that any slight change is quite noticable, hmmm, I wish they would've done a hearing test today. Maybe my brain is having more sensory issues than I thought....
Take Care :)
Emily
Good luck tomorrow and keep us informed.
Emily, I would agree with you that a workup for MS is warranted. With the distributed "microvascular" damage you describe, it may be hard to make a distinction, but it's still worth attempting. Do let us know how your appointment comes out.
Regards, Red