One thing that we all discover through this process is the incredible resilience of the human spirit.
The level of suffering that many of us endure through psych med withdrawal is akin to being held in captivity, kidnapped, in a concentration camp, starved, and so on.
On Living with Akathisia, a fb site dedicated to helping those living and surviving akathisia, there was a memorable post that from a sufferer recently.
Forgive me if I am repeating myself.
The poster said that he had survived liver failure, autoimmune illness, an OD, heartbreak and a gun shot wound and NOTHING brought him to his knees like his akathisia did.
Psych med withdrawal, particularly benzo withdrawal (I'm biased however but I believe anti psychotic and antidepressant withdrawal or other med injury as well) is really on another level.
We are hidden away like roaches, shunned from the medical community, shunned from our former "friends" and "colleagues" that once respected and enjoyed our company.
Many close to us believe somehow we are doing this to ourselves.
Something in our personality is causing this to be as bad as it is and we should use positive thinking, faith...insert whatever magical cure in there to cure us. God, how I wish this was true.
Now, I am not saying that faith and positive thinking can't help but how can you ask a broken brain to be positive? Would you blame a person with a spinal cord injury for not walking? Would you blame cancer on the victim?
Yes, we must try and help ourselves in little ways that we can, if we can. Sometimes sitting in a recliner is all that we can do.
Baylissa wisely said when she hit acute "nothing worked". She tried tapping , meditation, visualization...all of her tools were pointless in the midst of a biochemical breakdown.
But we heal.
Most of us, anyway.
One post from a long time protracted sufferer begged the community to not turn their backs on those STILL suffering 5-6 years off. The community turning against it's own is doubly painful.
Well, I'm not there yet and I don't know how I will be once off but I know judging from my journey so far, that it will continue to be the hardest thing I ever do in my entire life.
For now, I have a tiny melted sliver in my mouth each night of .04 Valium and I'm about ready to jump.
Because my state of existence is better than full blown akathisia. I can't endure that for longer than several days, there is just no way.
I'm hoping I have a cushion to buffer the fall.
I wanted to also update y'all that my nerve conduction was normal.
This is good news.
Well, that is the good news. The bad news is that as my nerve study came back normal, the doctor basically waved her hand and said " not much I can do for you".
She urged me to go to a general doctor for more tests. When I asked her not to give up on me, she politely told me she had not intention to do any "digging" for me and that essentially I was on my own. I mean, I already knew that but she refused to follow my care.
Initially she had agreed to see me for a follow up in JUNE but later the receptionist called and told me she was cancelling it.
I am having neurological issues and yet a neurologist won't see me or follow my care.
What made me feel better was that a fellow sufferer who was already healed had a relapse after 3 years off due to benedryl. His akathisia and other symptoms returned. He booked a flight to New York with the head of neurology at Columbia University.
This "brilliant" man told my friend that benzo withdrawal doesn't exist and that if he was doing medical research, he should go to a psychiatrist because he has an anxiety disorder not a movement disorder.
So, we are alone but we are alone. All over the country,in big cities and small towns, all over the globe this is being denied by most doctors. DENIED. Why is this epidemic so overlooked?
How a head specialist in movement disorders can deny benzo withdrawal is just beyond me.
No words people. No words.
So, there it is.
Laugh or cry. Laugh or cry....
It's been a long while since I have checked in.
I know everyone wants a happy ending, but in benzo withdrawal, at least for some, that ending doesn't come for a long time. I'm worried it won't ever come.
I tried a new tactic. Stop focusing on obsessive medical research and tirelessly looking for answers. Do your day, and see what happens.
Well, I can't say the results have been way different.
My CNS is fried. Bottom line. Every day I'm frying, It's scary.
I'm down to .04 valium. Yes, you heard right.... the ridiculousness of it doesn't escape me.
But I'm petrified. I'm petrified that my living hell could actually get... WORSE.
Here's a list of my symptoms from order of importance:
Brain literally burning
Stabbing especially in chest and brain
Chemical terror/Chemical anxiety
Shoulder tics at night
Jerking arms torso and head shifting to the side as I am falling asleep
Legs pointing back arching ---quick seizure like movements
Some of these symptoms are so hard to even put into words because there really is no framework for this kind of physical breakdown.
In my 40 something years on this planet, I have just NEVER experienced anything like it.
I am beginning to really think something is terribly wrong, but I feel like either my heart will just give out or I'll start to heal once I get off.
I hate to say it but I think I fall outside the normal range of benzo withdrawal at this point. So if you are reading this, don't despair because I have yet to hear others with such a badly bruised CNS even on the internet.
That's why, despite my inclination, I am doing more medical digging.
Tomorrow I'm heading into a nerve conduction study and I'll keep you posted.
The neurologist had wanted me evaluated for some rare autoimmune encephilitis issues and I had the blood work done weeks ago. If they come back negative she will be sending tests for even rarer antibodies.
Sadly there have been two cases on BB that I have read about where AE did come about either after withdrawal or the symptoms and problem came on before but weren't diagnosed until they got hideously bad in withdrawal.
Regardless, that is my medical update.
I'm SO SICK of being a professional patient, I cannot even begin to tell you how envious I am of WORKING CENTRAL NERVOUS SYSTEMS.
I barely knew what a central nervous system WAS before this bullshit.
Bottom Line--just SAY FREAKING NOOOOOO.
And doctors are DRUG DEALERS.
That's it folks....
Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.