Getting closer I hope

How to present data, and your concerns to your doctor.
​Hint: Don't do what I did!

Today was an immunology appointment. Unremarkable, but waiting for results. However, he seemed to know a lot about akathisia. I may have hit the jackpot. He said he had a friend, a doctor, who was 'obsessed' with akathisa and felt that most, if not all of the psychiatric illnesses people were being diagnosed with were in fact akathisia. Wow. Who is this man? He said he was an out of the box thinker...an eccentric. He lived and breathed akathisia. I had asked if this doctor had in fact suffered from it himself? What prompted this interest? (if we could give doctors a dose of this for one week they would change ALL OF THEIR PRESCRIBING PRACTICES that second, guaranteed).

 This "out of the box thinker" isn't really out of the box.... let's just say he's a doctor that is THINKING. This akathisia doctor, whom I don't even know by name, is said to believe that doctors keep piling meds on because  patients are complaining of vague symptoms that are in fact toxic side effects, namely akathisia. I was so pleased to hear that someone on this planet earth, and possibly in my city, actually gets it. But of course he's labeled as an 'eccentric out of the box doctor'.  Wake up!!

​Theodore Van Putten MD was it seems from my research the big writer and thinker on this topic.  I will be waiting, hoping I can get this man's number at some point as I am tapering.

It is 2am and no sleep in sight. I had promised myself that I would stay OFF electronics which is the only way to calm the CNS into sleep. That and doing DNRS training. It is soooo boring I tend to fall asleep in the middle of each lesson.

​So, this immunologist did some tests. I tried to stay composed but didn't manage to. I left a seething message on my other doctor's voicemail and immediately regretted it. I have been trying to get into an EEG now for over two weeks but can't seem to get me an appointment. Tired of fighting. I cannot fight in this condition. No more doctors. They are utterly useless. Except this akathisia guy. I hope he can be an advocate at the very least.

​I really should write a blog on what NOT to do when you go to the doctor. And that will include everything I HAVE BEEN DOING. Argh.
I know I need to be composed, contained, stoic, present data.
That's sadly just not where I am at. I intend to show up that way but my emotions and PTSD get the best of me the minute I arrive. I just can't be contained anymore. And the more dismissive or hurried they are the worse I feel of course...

What to do when you go to the doctor:

Prepare a timeline
​Submit medical paperwork and relevant medical reports
​Start with what is happening now
Slow your speech down
Let them talk
Listen
​Don't become belligerent or argumentative
​Kill them with kindness
​Vulnerability works better than tears or anger (?) maybe??
Data
Stoic
​Get to the point--tell them what your concerns are and what you need
Bring in an advocate like your partner, mother, friend, someone who can vouch for you and who you USED TO BE ( I am speaking for myself)
​You direct your care, they do not. You present your data then make an informed decision.
​They likely know little to nothing about benzo withdrawal--you can teach them if they are willing to learn and listen (unlikely)

​Ok... so the above is what I did NOT do. Actually, I did provide a timeline and paperwork. I tried to slow my speech, but I am from the East Coast and that doesn't come so easily for me. I tried to present data and chit chat about his family. I tried. Hmm. I think I failed but.... I tried nonetheless. If your story is complicated with a long history of medical issues as mine is then keep it as simple and current as you possibly can.

​I feel somewhat hopeful that this appointment may lead me to someone who really understands the complexity of my primary issue and dread which is akathisia, terror, burning... all of which usually are rolled up into one.  Wish I could be writing about more pleasant things, But right now, this is what I am spending my days dealing with.
​I did manage to cap the day off with an evening walk. It felt ok. It tired me out and I was able to lay down for a bit, give my kids hugs and kisses and now.. hopefully before 5am I will be asleep.
​Good night.
​