Anybody out there??? Feel like I'm an alien. Need some emotional support

[brainzap]

Just joined. Learning my way around (as difficult as my vision is). I'm posting the same as I did on another site.
Was quite normal up until eighteen months ago then had severe inner ear infection alongwith extreme vertigo and severe pain in head for weeks and weeks. Had a number of mini strokes (so the neurologist says). I have been unable to 'view' things in a normal manner since as I feel like I'm literally in another world. Can see everyone but I'm totally disconnected. If I get one 'semi normal' day in a week then that's great! Continual feeling of 'electrical interference' at the back of my head and extremely loud noise in various parts of head. Total exhaustion after communicating with anyone. Can't cope with more than one person at a time. Have become very sensitive to sound. Tongue has begun to go numb recently and have difficulty getting words out at times. Other symptoms as well, but all I'm seeking right now is support. Doing everything in my power to prevent a major stroke. Would like to contact someone having similar experience. Don't know where else to turn to nor what to do anymore. Latest TIA was 3 weeksago.

[suede]

brainzap,
I'm so sorry to hear of all that you are going through.
I wish I had some advice for you, all I can do though is offer some hopefully kind words and support.
I started coming here and other health boards about 8 yrs ago for spine and nerve problems, until I found this site and others I thought I had surely lost my mind as the Dr's had me in a tail spin and convinced that it had to all be in my head, since though I have been dx'ed with numerous spine disorders and permanent nerve damage and a auto-immune disease as the list goes on.
A few months ago I was also dx'ed with macular degenerative disease in both eyes, which they say is pretty uncommon for someone my age. As of right now it's not to bad, but who knows.
I can relate to having eye problems though thanks to my 2nd ex, he beat me pretty bad and at one time damaged the optical nerves and I was blind for sometime and then when I got my sight back I had double vision for over a year..
Well sure didn't mean to make this about me, just want you to know I can understand a little about how your feeling.
I don't get to post as much as I did and would like to as my hands don't always want to work these days but I try..
What kind of treatments and are the Dr's giving you and what is the prognosis?
Please feel free to send me a Pm also if you just need to vent or want to talk.
Hope you find what you need here.
Lots of hugs,
Linda

[Tootsie]

Hi brainzap,
Welcome to the braintalk forums, although it is always a little sad to hear that someone else has had such serious issues that they seek support here.
I try to check in about once a day. However, sometimes the forums are really slow. Super Bowl Sunday is coming up and that may slow things down here a bit.

I have no experience, or wise words to offer for your particular symptoms. However, the general feeling among those of us who deal with infirmities or disabilities of any kind, is to take one day at a time. Avoid nosiy situations that annoy you. Limit your social contacts to a single person for brief periods of time. That might help deal with the isolation that you feel.

Has your doctor suggested any kind of occupational therapy to help with your perception? Make sure you explore all your medical options so that you have the benefit of any therapy or treatment that might help. Cheerio.

[brainzap]

Wow Linda, you don't make me feel so bad nor alone now. You've also had a lot to contend with. I thank you for your understanding. I had a lot of shock treatment as a teenager and also contracted viral meningitis in my 30's - was in a coma - but came out relatively unscathed. I was at my peak of fitness then. Used to run 10k per day and worked hard.
As for treatments. I'm not a great one for putting foreign things into my body but have recently gone along with 1 aspec (aspro) per day to thin the blood as per Drs. advice. Personally, I don't believe it's helping as the noise has intensified since I've started taking them. Thanks again. A hug to you too. Caryl

[brainzap]

Hi Tootsie,
Gotta confess I'm doing what you've suggested and l am literally taking one day at a time. No, my doctor has come to a dead end and says he can't help any more as he doesn't know the real cause. My central nervous system just shuts down at times and I go into a complete paralysis state for hours on end. Haven't quite given up yet, but I feel my body may well give out before I do.

[Buttons2]

Hi Brainzap, you've come to the right place. Welcome to BT. Sorry you are going through this.....makes me very grateful I can still walk!

Can we assume you have gotten more than one doctor's opinion about your condition?

I empathize with the poor eyesight & noise that's driving you bats. I gave up driving 3 years ago & I've become very reclusive, sometimes I feel like I don't even want to be a part of society anymore.....to hard to keep a conversation going! And my life is so dull to other people, who wants to be around someone in pain?

My sensory overload right now is smell! What's with that? If not one thing then it's another eh?

Your situation sounds downright scary, can we assume you don't live alone? Are you mobile?

Here's a big HUG for you, please check back & let us know how your day is going! I actually feel that BT has saved my life,just knowing others are out there & understand is such a huge difference from friends/family that figure I must be OK, I'm still walking!

Super Bowl Sunday, well....I'm very disappointed the Seahawks won't be playing but my housemate is rooting for the Bears & I'm going for the Colts! Maybe my son's will be here & this place will get lively! It's a rare day to have any visitors anymore. I've been downright rude to people that just "dropped by" when I felt horrid.....manners seem to be another loss. Who wants to entertain when it's mid-afternoon & you haven't bathed for 3 days cause you can't get up the stairs to your clothes,etc. & you only want to be left alone anyway? Cyber friends don't give a hoot what you look like!:D

Take care & hope this day is a good one for you!
Buttons

[Tootsie]

Brainzap, do you think there might be any problem with nutrition? Certainly, that can't be the total answer, but from reading here and elsewhere, I do know that there is some connection between vitamin B deficiencies and the nervous system. It sounds as if you have had various incidents throughout your life. Does your doctor think there might be any connection between those shock treatments and your current symptoms? Just a thought. Cheerio.