[ILostMyPhone]

I repeat myself because I'm in extreme pain. I talk a lot, and way too much.
I wake up very dizzy in different environments I stay the night at.
or in my own house.
I have trouble sleeping at night.
I wake up in very early in the mornings.
I don't rest, I don't sleep, I don't sleep in, I don't take naps. I only get 6hrs, less asleep at night.
I cannot get on my phone, tablet, laptop, I cannot read a book, do things I use to do that makes me happy, and relaxes me.
I don't even get a chance to look at my phone, because its left behind ''dead'', and haven't been looking at the time of the day, and the date of the day.
And that's not good at all.
I jerk back and forth, and have these ''tics'', and my eyes roll back.
Extreme head aches. I lost my ability to shed tears and cry. Because of it.

I'm in extreme pain, it makes me repeat myself, go 'crazy', talk about the same subject for many hours, get stuck on things, go on and on about things.
Makes me talk waaaay toooo much.
Constantly.

Not rest at all.

Then, I'll start ''crying'',
and acting like a child.
If I go to public places, because of being in that much pain.
I cannot handle large crowds anymore, be around people anymore.
Afraid because of my nerve damage, that people will just look at me like I'm nuts and crazy and kick me out of the store.
Because of being in extreme pain.

And when I wash my hands, hygiene routine,
I don't react to hot water at all.

So I turn it down in the middle; lukewarm.

Because my nerve is so damaged messed up,
I'm unable to, stop talking, I'm very annoying.
I upset loved ones around me, and get onto me about things.
Its like my brain suddenly is just challenged now.
I've been tested for autism and all this stuff.
Have nothing wrong with me I'm normal.
I just have nerve impairment.
My nerve impairment, makes me repeat myself like this--

''I repeat myself.''[5x more]
''I repeat myself'' [5x more]

And I'll start crying....
but I won't cry, like shed tears cry, I won't cry normal like I use to.
I get real loud now, and cannot help it at all.
I'm learning how to control it.

But;

I cannot control it.

I cannot control that my trigeminal nerve makes me embarrass myself,
repeat myself, talk too much.

How would I ever be understood with this disability I have, that makes me repeat myself and talk waaaay tooo much. Makes everyone reject me, not want to talk to me, makes people scared of me afraid of me. I cannot have a social life, nothing. I will never see myself get married, nothing. Not even have friends.
My siblings won't interact; talk to me at all.
People think I'm nut's and I'm not.
I have an invisible disability that nobody sees and understands that I'm in extreme pain, nobody just see it.
I get mistaken as autism.
And I'm not.
Does anyone with trigeminal nerve damage repeat themselves, and talk too much and how to control it? Why is it so hard to control?

How do I control my nerve?

[Lara]

Hi ILostMyPhone,
Welcome to NeuroTalk Support Groups.

I'm sorry you're in so much pain. I don't know if you've had any surgery at some time for your TN (e.g. gamma knife or otherwise) or if you have any other neurological conditions.

You mention not feeling hot water, so wonder if you have neuropathy? Is it just your hands that can't feel the hot water or is it all over?

The repeating phrases sounds like Palilalia. Do you have access to a neurologist, neuropsychologist or at the very least a speech pathologist?

You also describe quite severe sounding roller coaster with the crying outbursts from having so much pain. Have you looked up "pseudobulbar affect"? Does that sound similar to what's going on for you? If your pain and stress levels are lowered you may find your Palilalia and emotional rollercoaster settles down.

If I was in your situation I'd keep a daily symptom diary and see my doctor for a referral to a specialist immediately. You don't mention any tests or doctors you have seen specifically or how long this has all being going on.

I don't even have Trigeminal Neuralgia so I can't address that at all I'm sorry, however I read your message and those few things stood out for me. I hope you are able to get some real help soon. I know it's such a terribly painful condition.

[tied]

I do have TN but mine is a very mild case. It could be the drugs you take for it are causing these side effects. Lack of sleep can also cause craziness. What kind of treatment are you receiving? I remember some of my symptoms seemed really strange, like my eyes darting about involuntarily. I had adverse reactions to most of the drugs used to treat it, and so I had to stop taking them. I manage pretty well, but my symptoms are not that bad. I focused on stress reduction. I have a supportive environment at home at work. I knit a lot which for me is like meditation. I also hit on some non-medication techniques that help my pain, usually quite by accident. For example, it helps if I pucker up as if for a kiss.