Feel like I'm on Titantic & sinking fast...thru deep fog into a deeper dark sea... Pain, overwhelm, dysfunction....
I've been swimming in pain & Losses... of abilities to do or even think ...
what to do? where-how to get thru THIS ??
try to spit out something tangible.
After years of going Drs, neurologists, tests, medicines... I feel worse, more confused, Lost .... what's happening??when did it really begin??
with the accident 10 years when Hit by car?? "minor" traumatic brain injury--concussion along w/ other injuries that took long to heal w/persistant pain;
Dx of post traumatic Fibromyalgia, covered much --chronic pain, fatigue, sleep problems, other "strange" manifestations--but not all esp. the episodes of "drop attacks" , which look like Cataplexy. Tests "ruled out" sieuzes and Narcolepsy. my PCP Dr. at that time felt may be due to cervical spine -acquired Chiari. Consulted Neurosurgon who only stated did NOT need surgery. In years since many more "falls", head injurys-concussions- one of worst since hit by car, was in a freaky accident weeks ago. Wheelchair lift on van thrust out & cracked me in head; split open, knocked me out. Since, have constant headaches, nausea, confusion, memory, fatigue, sleep problems, more.. that seems to be post concussive disorder that's not resolving. My current PcP felt these symptoms from Pain meds I've been on for years, and now on drug holiday. Since I stopped the long acting narcotics, which previously had been helping me -except for the crazy making neuropathic pain that hits hardest at nite & prevents sleeping, I feel much worse. Pain has exaccerbated as have sleep problems. Old pain disorders resurrected w/ a new vengance. Chronic pelvic pain, stabbing pains in old trauma areas--legs, neck, back; and more, worse neuropathic pain, and weakness esp. on left side.
My old neurologist, had dx'd "idiopathic" neuroapthies many years ago, then dx of CIDP (which was "contested' by other specialists) I was treated w/ IvIg for few years (neuro felt IvIg could help other "problems") tho I did NOT experience the relief many other patients reported, did see worsening decompensation when off Ivig. Neuro reordered Ivig last summer but denied by new insurance. Appeal for Ivig in limbo...
I'm sinking... what to do, what is "wrong", what is right!!
I'm rambling, as I just want to get something out & try to begin again.
Perhaps thru Community (tho big & difficult for me to navigate)

My history is a bit complex, I've been to many Drs, have tried MANY meds (hoped something would help but allergic or adverse reactions to most meds

I went to new DR/rehab physiatrist (spelling??) DO specializin in brain injuries & treatmt of neuro & chronic pain dis. He seemed concerned about head/brain injury -is referring to neuro-specialists for more tests, But like most docs focus on symptoms. #1. need for SLEEP
I agree. I've tried many meds , herbs, etc. and because of my Hx of adverse reactions, often opposite of intended benefit , I'm ...apprehensive, but try to stay open to things that may, can help...
I'm losing my thought train & energy now... but want to get this out, hoping it makes some sense, that someone may have suggestions, support ....or even answers to some of the many quesrtions that brought me here to this Big community in my Quest, for Help, support, more..
I've been trying for so long to find something for my problems
these chronic pains & resuling challenges (Sleep, daily function, Life)
I'm overwhelmed again w/ fatigue-for me the worst--Not having energy. My mother & brother used to say when going thru various phases of their (terminal) illness--"Can [usually] tolerate the pain but fatigue... is like not being alive"...
I've said more than intended but perhaps not enough... or in best way, but for me now it's the only way I can. "When I know better, I'll do better..." In so many ways I do know better... I know I "should" be eating better but don't (nausea, taste & smell distortion); exercising!!! would be great but it's a challenge to walk to bathroom; meditaion, imagery, "positive" thinking-- Wow, would be wonderful,
not sure what else to say except

Blessings to all...

Hello and welcome pono,

I don't know if you have considered this but since you mention serious head injuries/concussions/car wrecks, I would like to give you some chiropractic links that explain about the C1/C2 adjustments/alignments.
It may not solve all your problems but it may help with some of the symptoms.

may be of help-
Postural work/info
http://www.somaticsplus.com/ws2.html
http://www.om-rehab.com/treatments.htm
http://www.sportsinjurybulletin.com/...acic-spine.htm

Chiropractic care info- a good one can help with many symptoms:
http://www.upcspine.com/self.htm
http://www.uppercervical.org/subpag...b/about_faq.php
http://www.spineuniverse.com/index.html
http://www.coloradochiropractic.org/.../glossary.html

Anatomy links
http://www.gwc.maricopa.edu/home_pag...rial_Small.htm
http://www.gwc.maricopa.edu/class/bi...cle/mustut.htm
http://www.meddean.luc.edu/lumen/Med...em/learnit.htm
http://mywebpages.comcast.net/wnor/homepage.htm

ART-active release technique
http://www.google.com/search?client=...=Google+Search

Naturopathy/Homeopathy
http://www.abchomeopathy.com/simplified.php
http://www.hmedicine.com/news/guide/single/singles/all
http://www.webhomeopath.com/en/jsp/login.jsp

and our main page link for all forum topics-
http://neurotalk.psychcentral.com/index.php

Welcome, pono! How I wish I could give you a hug. You've had more than your share of problems! jo55 has given you some good links. Have you found the traumatic brain injury and post concussion syndrom forum? http://neurotalk.psychcentral.com/forumdisplay.php?f=92
Others that might help you are the chronic pain forum: http://neurotalk.psychcentral.com/forumdisplay.php?f=10
And with all that you are going through it would not be at all surprising for you to maybe need the depression forum: http://neurotalk.psychcentral.com/forumdisplay.php?f=37
I wanted to post these links for you to make it a little easier for you to navigate around the site. Hope this helps some.
Hugs,

Oh Pono...you got my vote! I too would like to join in the group hugs!
What can I say but a heart felt sorry...glad I wrote this out....
hard to say without slipping up here!
Just try saying "heart felt sorry" 3 times withoug slipping up! LoL!
I love to laugh....I know this is serious business,
with all you have on your plate....so much....just too much.
I wish I had a majic wand...could use it all around the world!

I too had/have Peripheral Neuropathy...
and a lot of other health issues...
I won't make your eyes glaze over here...
but I was very very ill, fatigued...
I called it Mind sucking fatigue!

I just wanted to pull the cover over my head and just die!
I used to "pray" this prayer..."GOD...either heal me or kill me! I'm suffering!"
I know it sounds angry...but I was dying and suffering terribly.
I'd been seen by many Neurologist, non offered any help...
told me just take anti seizure meds to only MASK the neuropic pain....

NO WAY! I wanted to know wny I had PN when I"m not diabetic!
I too have loads of allergies...
I've had Anaphelactic shock reaction to many medications...its frightening!

I found a way onto a website where Rose here on NeuroTalk answered my post.
She suggested I take a proper form of B12...Sublingual Methylcobalamin B12.
Once I started taking it my fatigue began to lift....
then my Neuropahty began to get better...
within a few months it was nearly gone except feet and hands continued to burn,
but NOTHING close to the pain I had back then.
I went from having moderate sock glove pattern of PN in June,
to complete normal EMG and NC test in October same year! Why? B12!

I thank God I was able to muddle thru the web with what little brain cells were working...
and that Rose is an expert regarding this AND I took her advice and began taking it.
I thank God He didn't answer my anger prayers!
I know B12 is'nt a cure all...but perhaps would help with your fatigue and who knows how it might help your PN IF its caused by a deficiency.

I realize yours may be caused by nerve entrapment...
but at least this is a begining and all the B12 in the world will NEVER harm you!
Maybe caused by medications taken or surgeries you had?!
Mine began after my second treatment of IV Remicade and Methyltrexate I'd been
given to treat Crohns disease.
Then I got much worse when had hours long surgery where they removed several feet
of my small intestines.
Step by step, I got weaker and muscle weakness so bad I used a granny walker.
Then the "burners" turned on higher and PN spread over my entire body.
My B12 level, I was told normal! 232 is NORMAL? OMG!
Rose deserves a Pulitzer Prize for her studies!

Slowly the doctors are realizing they are wrong, but its taking too long
and in some cases people are dying from it, while doctors stand there scratching
their heads and other distasteful appendegas!

There are many ways to become deficient even while having normal range/levels!
While mine was a step by step "process" after every "procedure" trying to heal me,
some seem to happen over night and out of nowhere.
You can read all this info on the Vit/min def forum.
Post your story there (copy/paste it) and ask for Roses help.
She'll be more than happy to help you and educate your doctors on this.
Blessings to you. Cheryl
PS...its easier to read long post when you break the paragraphs up
into smaller "groupings"....
we want to be able to read all you've written
cuz lots of people here care about others...wanna know why?
Cuz they KNOW pain!
We understand only because we've been there, done that!
It's kinda like an all inclusive memership! We're special!
Here's just a few pics showing ways the Lord wants to prove He loves us!

Attached Thumbnails

         

pono,

I am so sorry to hear of all you are suffering and do hope you will find the support and information here to help make thinga a bit easier to cope with.

Do let us know if you need any help finding your way around the Community

~Cheri~

Hi Pono, one of the things that stuck out to me was the Chiari? Have you ever had a follow up for that? I have syringomyelia, not chiari but alot of people have both. THere are so many symptoms that you list that many with chiari or SM also have troubles with.

One thing is that if you do have chiari you should not have chiropractic work done. The message board for ASAP is down right now but you can still read all about it at the site. The web site is at

http://www.asap.org/

Give it a look around and hopefully the message board will be fixed soon and you can get more information there. I am still learning myself but there are many there who know so much and are very helpful.


Hope you feel better soon...Sue

thanks to all who've offered suggestions, support, Links, info...

I've been in such a state of dysfunction--physically, mentally, etc.--
Simple things like reading , writing, thinking are tiring & confusin; activities of daily living : personal care, home, chores, finances, etc.- overwhelming.

I do appreciate support & help offered.
May take awhile to sort thru
Not sure what may be best, keep looking for better --tangible things I CAN do. This Community is BIG! any directions, assistance in navigating and
Suggestions, info, experiences shared are greatly appreciated, as well as understanding.
I'm trying to understand --what 's happening and ways to deal, heal, Live.
to break this vicious cycle of Pain. Fatigue. Dysfunction.
I became more dysfunctional after stopping Pain meds. {few weeks ago]
but I'm back on. Not THE answer but Helps. Not sure about the other meds. new Dr. prescribed--too many side affects when tried before and now, as I try each one , again.
Re-searching treatments, alternatives, options....
One step at a time...
will keep looking into suggestions, Links, info...
again THANKS and BLESSINGS...

aloha,
Li

Did you find the main page link - most will save or bookmark that for easy access to all forums.

main page-
http://neurotalk.psychcentral.com/index.php

YES,
thanks, I found... still learning how to navigate around!