Functional Neurological Disorder - Mostly sensory

[curlyblue78]

Hi!

I'm new here. I think I have functional neurological disorder. My neurologist didn't state it in those terms, but she explained it as a human brain is like software and my brain has a glitch, even though the hardware seems ok.

A little background knowledge. I'm 39, born with nearly complete deafness. Have a very tiny bit of hearing in my left ear, and wear a hearing aid in this ear. Three years ago, I had a sudden drop of hearing. Over 25db in one year, which is a lot. Unknown reasons. I had a lot of tinnitus, disequilibrium, etc..Was diagnosed with vestibular migraines. Tried couple meds like nortriptyline and gabapentin. Went into remission.

Flash forward, 6 months ago, I started getting ear pain in both ears, that increased depending on which side i was laying on, at night. Went to the doc. Ruled out ear infection. Then I woke up a few nights later, with a wave of tingles, ear pain, and head spasms, stiff neck, tinnitus. Progressed into touch sensitivity into the body, best way I can describe it. Like a feather touching skin around various body parts, or nerves waking up from being in the snow, etc...minor twitches, especially

This started off a journey of many dr appmts full of anxiety, 2 MRIs with contrast, all kinds of bloodwork, x ray of back, referrals to see doctor. All told me nothing could be found, so it must be anxiety-related, except for the ENT and 3rd neurologist, who said vestibular migraine and sensory issues.

My symptoms are:

tinnitus, waves of tingling behind both ears and head, head booming sensation, headaches, disequilibrium when moving eyes, stiff head/neck and back, squealing nerves that I can feel from head to toes, prickly skin through body, tingling through body, random sharp prickly pain here and there, chest blip (hard to describe, but like a chest cough without coughing), sensitive skin on body (like a sunburn), etc...The left side is more symptomatic.

I don't have any muscle weakness, loss of coordination, numbness, etc...Starting to feel down in the dumps thinking this may never go away. Nortriptyline did help a bit, but it caused weight gain, so i stopped. Topamax was tried, but was awful. Thinking gabapentin?

Just feeling depressed thinking it may never go away and still worried it could be something else. Would love advice and support.

Thanks for reading!

[pickleweed]

For the doctors who said, "Nothing could be found, so it must be anxiety-related," one would want to ask them, "What do you mean by anxiety, as described at the neuronal level?" It is possible that your brain is amplifying useless sensory signals and not giving enough attention to important sensory signals. One way for testing this is to put your body into a situation in which the brain has to make better decisions on which signals are important and which ones are unimportant. One way to do this is to camp outside at night. Subject yourself to cold temperatures (not deathly temperatures) and discomfort. See if this helps your brain readjust the magnitude of the signals that reach your consciousness.

[healthray]

You and I share some of the same symptoms. My heart goes out to you my friend. Even within the world of FND's our purely sensory symptoms are rare.

YOU MUST TRY TMS.

TRANCRANIAL MAGNETIC STIMULATION. Please harass your doc to provide a prescription for TMS for " drug resistant depression". Even though your illness is neurological the insurers will only cover TMS for drug resistant depression.

I urge you to try this treatment because it is designed specifically to correct abnormal neural function. Your neurologist should order an fMRI study to map neural function as a likely origin of your illness. Regardless, TMS has proven to be very effective for treating FND's.

I only wish I could get the treatment. Unfortunately I am in New York City and on Medicaid. TMS has been prescribed for me five times and the state of NY has ordered Medicaid to finance the treatment but nobody in or out of the hospitals will provide TMS to someone on Medicaid. Hopefully you would not encounter those problems.

God bless and good luck.