MOVE OVER AMY, MAKE ROOM FOR PAG

I always blame AMY when I am frightened. You know, my right amygdala. In the limbic region of the brain. I was taught in grad school that Amy (as I lovingly call “her”) was responsible for my high anxiety and panic attacks. New research shows that Amy isn’t the only culprit. Here comes PAG, joining in on the fun and games.

The University of Bristol shared this with the world: Neuroscientists have discovered a brain pathway that underlies the emotional behaviours critical for survival. 

“An important brain region responsible for how humans and animals respond to danger is known as the PAG (periaqueductal grey), and it can trigger responses such as freezing, a high heart rate, increase in blood pressure and the desire for flight or fight.”

The scientists discovered a brain pathway leading from the PAG to a highly localised part of the cerebellum, called the pyramis. This little baby fires up when our survival networks are activated during threatening situations, real or imagined.

Of course the good scientists now want to find ways to stop the pyramis from giving us the heebie jeebies, stating that the “cerebellum is a promising target for therapeutic strategies to manage dysregulation of emotional states such as panic disorders and phobias.”

I pray the scientists don’t muck up that part of the brain with drugs. You and I, dear reader, have already been the victims of the pharmacological approach to managing anxiety. Since the cerebellum is the seat of movement, I’d be curious to know if movement could turn off a hair-trigger pyramis. A good thirty minute brisk walk (hopefully through nature!) instead of popping a pill. See what that does.

Whether or not movement puts the pyramis in check, walking everyday is a good idea. Some studies suggest that thirty minutes a day will lengthen your lifespan. That may not sound like a welcomed thing right now if you are suffering in withdrawal, but honest injun, once your receptors heal, you are going to want a lot more years to celebrate the return of good things! I know I do.

Next time I get a case of the heebie jeebies, I’ll still have a talk with AMY, but I’ll also give a looksee to PAG, lace up my tennies, and go walk it off.

Keep holding on everyone. Everyday is a day closer to your miracle: RECOVERY!

THIRTY FOUR MONTHS FREE!!!

34 months free! YAHOOOOOOO!

Today I celebrate 34 months free from the beast. It’s been a long, hard, dark, road to have to travel, but here I am, still standing, and BETTER THAN EVER!

I still have symptoms, but my life is sweet. I’m wallet poor, but heart/soul filthy rich. I’ve learned so much about who I am, what life is all about, and most importantly, how to love, and how to let go and let God lead my life. I’ve fallen in love with God in a way I never thought possible.

Symptoms: still wake up tingling. Bone pain, muscle pain, weakness at times, head pressure, dizzy, benzo belly, ears screeeeeeeching, (I don’t think that one is ever going to go away. I’ve heard it can be permanent.) insomnia, spine burning. But even with those symptoms, life is good. I have a full and normal range of emotions again. They are not so big and overwhelming anymore. I have boatloads of hope and anticipation of a good future. I also have an abundance of acceptance and appreciation.

My friend Paula and I went to dinner last night. We talked about the years I struggled to recover. She thinks that my inner ambition, the desire to keep doing something and do that something well, is what helped me hold on. I think she may be right. I threw myself into gardening. My front yard became my sanctuary of healing. It also became a gathering spot for the neighborhood, even for strangers from other areas. It gave me a reason to wake up in the morning and face another day of terror, anxiety, depression, pain and existential angst. (Those symptoms are long gone, thankfully.)

I also know that working the 12 steps of recovery, as suggested in the book, Alcoholics Anonymous, helped me a great deal. They were instrumental in helping me find my way back to God. They also helped me learn how to be of service to others and to deflate my oversized ego. I used to have an undercurrent of shame running in the background of my life: ashamed of my sexual abuse at the hands of a neighbor and the subsequent assaults from other men that followed. I never felt I was good enough for anything. I always had to prove to myself and to others, that I was Ok. That meant I had to be perfect… in everything. Looks, weight, grades, accomplishments… it was exhausting! Then of course I felt shame over how I coped with feeling shame, which was to numb out with red wine at night. Shame becomes a very circuitous emotion, feeding and looping back on itself as it grows bigger and bigger.

ALL OF THAT IS GONE FROM MY LIFE due to having to survive benzo withdrawal. So, in a strange way, I am grateful for this dark road I have had to travel. I have zero shame. I have only deep and wide compassion for myself and the experiences I have lived through. I no longer feel driven to prove myself to anyone. I know, in every fiber of my being, that I have enough. I do enough. I am enough. (Someone posted those words here on my blog in a comment one day. I’ve taken them to heart. Writing a new book about them, in fact!)

Benzo withdrawal was the ugly, painful grit in my shell. With the help of God, I’ve turned that grit into a pearl. A beautiful, shiny, pearl. If I can do that, so can you!

I’m teaching a workshop this Saturday at Stanford University, How To Boost  Your Creative Brain Power. I can’t tell you how scrumptiously delicious it feels to be well enough to be an adjunct professor at (freaking fabulous!) Stanford. Never, in my wildest dreams, did I think life would take me here. I am so grateful.

I’m a better person for having lived through withdrawal. I’m a MUCH better person to be free from that poison that kept me so sick for EIGHTEEN YEARS OF MY LIFE!

I’ve still got healing to do, but so what. This moment, I feel that the possibilities ahead of me are infinite. One step at a time. One day at a time. Easy does it. I trust that good things are ahead. I trust God has his/her arms around me. Thank you, God.

Thank you too, all of you, who read my blog and those who comment or write to me. I love you all. I pray for you all every day. I know if you hold on and don’t reinstate, you can get to this place of peace, serenity and grace. I’ll be looking for you here.

Below is the new book that will be coming out soon. (Cover mocked up excuse water mark.) Thanks to everyone who read it and helped me edit. I appreciate your time and help.

Keep fighting the good fight. It is worth it.

myfavcover-1

San Fran Benzo Summit

Hope everyone had a great Easter weekend. I spent it with my friend David, my four kids and their significant others (and pets!) It was the first Easter in 4 years that I felt decent. My symptoms are far more manageable now. I still have tingles, burning, twitching, aches, pain…. you know the usual benzo crap. But it’s SO much better.

I asked for a show of hands for people who are able to come stay in the SF area for the benzo summit August 15-17. We have quite a few local people who want to come during the day, but not enough overnighters from out-of-town to make the minimum number of guests the Mercy Center needs.

The show must go on as they say. I will be hosting the summit at my house and we WILL be getting together. I may find a venue in one of the local hotels by the San Fran airport, so people can fly in and join us without having to rent a car.

I will keep pushing for the summit to take place. I am hopeful we can get media attention. The petition reached 600 signatures. I was hoping for 1,000, but will send it to the FDA soon.

Thanks to everyone who emailed me about the summit. I appreciate that so many want to support it, even if they are too sick to travel. (I totally understand.)

Onward!

 

Kindling. No, Not Firewood. Not A High Tech Reader, Either.

It usually goes like this: “Dr. Jenn, Hi, my name is (insert any name you like) and I’m freaking out. The terror is awful. Shaking. Pain. Weak. Man, it wasn’t this bad THE FIRST TIME I GOT OFF!”

Dr. Ashton talks about kindling: when the brain has been subjected to benzos, off, or lowered dose, then back on. For reasons unknown, the brain reacts MORE after repeated introductions of the drug.

I’ve not read any research as to WHY this phenomenon exists, but I certainly hear about it over and over and over enough that I believe Ashton’s observations are spot on.

I danced with the kindling demon myself. My doctor told me I could rid myself of my benzo (after almost 18 years!) in a month by cutting out 1/4 every week. Idiot. He was uneducated. I cut 1/2 my dose in a month and NEVER RECOVERED from that initial shock. I tapered down to .3 mgs. Bedridden. Unable to sit on the toilet unaided some days. Intense suffering.  A new doctor told me to go back up in dose to stabilize. Gladly. But once up, I didn’t “get stable.” Back down again. The SECOND time around, I was as sick as I was at .3 mgs when I hit .6. I was definitely kindled. In fact, I was so sick the second time around, I threw in the towel, let a new doc pump me full of pheno, and jumped. At 33 months free, I’m still recovering from body symptoms.

Had I NOT gone back up, and stayed the course with a taper, would I be this bummed up this far out? No way to go back to find out. But I do wonder, sometimes.

If you are tapering, PLEASE take it slowly. Listen to your body. If you are off, and holding on by a thread, KEEP HOLDING if you can. Reinstating and tapering again may be harder, and you may be more ill, the second time around.

I am not attempting to practice medicine on this blog. I am trying to warn you of the very real danger of kindling. One of our benzo buddies got free then allowed her doctor to convince her to reinstate and taper more slowly. She’s now on FIVE times her original dose and sicker than ever. 

Please take good care of yourselves. Remember most doctors are not benzo-wise. We still need to educate the medical profession. I am hopeful we can get them to understand this syndrome in the near future.

 

 

 

Easter Candy, Damn You!

I know better. I KNOW BETTER!

A few days ago I went to the Dollar Tree and bought Easter candy to fill plastic eggs. My four kids still love Easter egg hunts, even in their twenties. (I LOVE that about them!) My oldest son has 1/3 of an acre, perfect for hiding eggs. We are planning an Easter feast and dammit, I don’t want to be sidelined. Not like the last four holidays, anyway.

So you would think I would do ANYTHING to avoid a wave. (You already know what’s coming.) Yup. I ate Easter candy as I filled the eggs. At first it was just a few handfuls of Good N Plenty’s. But my sugar craving kicked into high gear. I fondled the bag of spice drops lovingly. Just one or two wouldn’t hurt, right? The jelly beans looked kinda sassy and scrumptous too. Yum. Yum. The only thing I didn’t eat was the chocolate. (Deathly allergic to it, of all things.)

Right about a few hours after my sugar binge, the tingles started. The tooth/jaw pain kicked in. Muscles began twitching. Electric zaps. Back of head pressure. Eye pain. Burning, burning, burning like a witch in Salem. Dizzy. Weak.

SIGH. I KNOW BETTER THAN TO EAT CRAP!

I am tugging on my wetsuit as I write these words, ready to ride this wave till it peters out. Crossing my fingers I haven’t set myself back too much, and that Sunday I can enjoy my children and their significant others and Sadie the lab puppy.

If anyone had tried to convince me, before withdrawal, that sugar (and food dyes) could do this to a body, I’d have laughed out loud in their face. It sounds so unbelievable. But what about withdrawal is believable? I’m a very imaginative person, (teaching a creativity class at Stanford next month!) and there is no way I could have ever dreamed this shit up about withdrawal.

Gotta scoot. Wetsuit on. Riding this wave like I own it till it decides to play itself out.

Making a note to self…no more sugar binges. EVER.

 

 

 

Wanted: Readers For Feedback On My New Book (Thank You!)

TA DA!

My newest book is finished. Well, actually, two books.

Stop. Open. Turn. Three Simple Listening Skills To Nurture And Grow Love In Recovery.

Anyone have time on their hands, and would like to help me out by being part of a focus group?  I want to know if it’s well written. Does it do the job I set out to do, which is to teach the three simple skills? Do I come across as likeable or too confessional? Bottom line, if you read it, would you want to pass it on to someone else to read? (Is it marketable?) It’s 102 pages, but not many words per page. Quizzes, and quotes take up pages as well.

WATCH OUT! I  share some of my benzo withdrawal in Stop. Open. Turn., so if reading about that will trigger you, please don’t volunteer. I want to be helpful, not hurtful to all of you in my benzo family.

Angel’s Cleaning Company is a short story. (24 pages) It’s not quite done as I still need to add a workbook after it, but I’d love for a few people to read and give feedback. (Disclaimer, It’s got a Christian bent to it. If that doesn’t appeal to you, you may want to take a pass on reading it.)

If you want to be a reader for me, (THANK YOU! THANK YOU!) please let me know which one (or both?) you want to read.

I want serious feedback, which means being truthful, even if you think it will hurt my feelings. It won’t. Trust me. I survived benzo withdrawal. I can survive a book that needs tweaking. (Even Hemingway needed a great editor. I’m far from his talent, so I need A LOT of them!)

I’m off to help out in a garden down the way. I’m decked out in my overalls, happy as a clam. Life is good. Very, very, good.

If you comment here, I will reply with an attachment of the book(s) this evening. (THANK YOU!)

 

17 Tubes Of Blood Later…

A few weeks ago I decided to venture into the water again. The medical world water, that is. My twins have lyme disease, and some of our symptoms are very similar. At 33 months off of Klonopin and still having body symptoms, I thought it was time to delve a bit deeper to rule out any other conditions that could be causing my problems.

I saw Dr. Kaufman, in Mountain View. He looks like Alan Arkin’s twin. Sounds like him too. He’s adorable, and he’s a good person. I’ve got super sensitive doctor radar now, and he passed the test. He works with people who have immune issues.

He tested me for a gazillion things. I wasn’t kidding about the 17 tubes!! My blood work came back and my poor body is action packed with issues.

Viruses that should be kept under check with my immune system are active again. Cytomegalovirus, all the childhood forms of herpes, chicken pox, and epstein barr are all showing up abnormally in my blood work. My vitamin B12 level was low as was vitamin D. (Which is hard to believe since I practically live out in my garden, sans sunscreen.)

The doctor and I wonder if the stress of withdrawal caused my immune system to weaken. People who have Chronic Fatigue Syndrome have joint pain. Check. Me too. They have fatigue. Check. Me too. They have exercise intolerance. Check. Me too. They have muscle aches. Check. Me too. So have I now acquired CFS, or is this still wd?

My killer cells may be out of whack as well. The lab mangled the test, and it had to be redone. But chances are good that it will come back abnormal.

What does that mean for us in withdrawal? I don’t know. But I am curios of if immune dysfunction plays ANY role in protracted withdrawal. It would be awesome if other people got tested to see if we have any common denominators.

What can be done about the condition? Well, there is a new antiviral medication that is supposed to work wonders. But…… I’m not jumping on board just yet. No sirree. Not after one pill made my life FUBAR… fucked up beyond recognition.

Here’s what I am doing: I am juicing every day. Without fail. I am remaining gluten free. I am taking Vitamin D. I am taking Oil of Oregano. I am also looking into taking Turkey Tail mushrooms. Possibly growing my own. If you haven’t watched the TEDMED talk with Paul Stamet, you may want to consider checking it out.

Another possibility is I have chronic lyme disease. I’ve been tested before. Its a long story about those results. I gave 11 more tubes of my red stuff to be tested for Lyme plus co-infections, and a few other groovy things on Tuesday. No matter what they cause, lyme or withdrawal, I know things will get better. I have come SO far in healing from the mental crap. I know my body will get better too.

I can’t help but wonder if immune issues are at play in those of us that take so long to heal. I did get good news from my test. My cholesterol is fabulous. My blood sugar is pristine. Yeah!

I will keep you posted. Curious what your thoughts are about immune issues and withdrawal.

Jenn