“What symptoms do I have today?”
My inbox brimmed with congratulations on my son’s wedding. Thank you! Many of you also wanted to know what my benzo withdrawal symptoms were like the day after. Here is an honest account of how a big, exciting day impacted my (still healing) CNS.
A bit more stress and strain due to the venue.
In the spirit of total transparency, I have to admit that the wedding venue added some emotional stress for me. The wedding, which was breathtakingly beautiful, was held at my ex-husband’s estate. I divorced him 20+ years ago and left that home with my four precious children in tow.
Happiness can rev up the CNS.
I walked my son down the aisle. My heart full of pride and a fierce love. We stopped at the last row of seats, hugged and parted ways. It felt as if my heart left my body and followed him to the alter. It hurt! My heart raced for a few minutes after I sat down. I was so full of emotions! It didn’t translate to anxiety, however. I mostly felt love, happiness, and excitement. There was some wistfulness tucked in here and there. If I’m honest, some sadness, too. Weddings can take you through an emotional journey as they are such powerful events.
My (now five children) Natalie, Kristen, John, Louis and William.
I danced the night away!
The mother/son dance got me on the dance floor. From there, I couldn’t resist.I danced and danced and danced! It was the FIRST TIME IN FIVE YEARS that I danced. I used to be quite the disco queen years ago. I loved going to clubs and shake my booty! I became winded easily last night, and my bones screamed in protest, but I danced!
Left at 11, humming with energy.
I called it a night at 11. Seven and a half hours of celebration was enough. Tired, achy, but intensely happy, I hugged and kissed my son and my daughter-in-love good night. ( They are trying for a honeymoon baby so I also placed my hand on her tummy and said a little prayer!) My best friend/neighbor came over when I got home. We looked at the pictures and videos I had taken. She allowed me to process my emotions. She left just after midnight. I went out and sat in the cool quiet of the night in the garden. My CNS hummed with energy. Not anxiety. Not fear. Just too much input! I knew sleep wouldn’t find me for hours. Even so, I crawled into bed and did my best to calm down an over stimulated body. (BTW I didn’t drink alcohol or caffeine, or eat a lot of sugary things at the wedding.)
Sleep found me at 3 a.m. Four hours later, I was awake.
I woke to my usual symptoms and some old ones.
- tingles/bee stings from my waist down
- burning skin
- intense muscle, bone, joint, nerve pain
- burning eyes
- blurry vision
- ringing ears
- head pressure
- bottom of feet burning, tingling, pain
- twitching muscles
- dizzy, woozy
- burning/tingling tongue
I’m happy. Ready to face the day.
I’m so used to pushing through the body symptoms. Today is no different. I’ll face the day with an open and grateful heart. I’ll say a prayer for my son and daughter-in-love as they start the first day as husband and wife. They catch a late flight tonight to an incredible resort in Jamaica. (Safe travels!) I know how to take good care of myself. I’ll do some light gardening, sit in the sun, and I’ll write, too.
My body paid a price for the good times of the night. It was worth it. Perhaps by the time my next child gets married, my CNS will be even more healed. I can hope so, at least!
No emotional/mental symptoms.
I have only body symptoms. No weird thoughts. No fear. No anxiety. No depression. None of those old symptoms returned. (Thankfully!)
Life goes on.
Yes, I still battle body symptoms. But life goes on, with all of its fullness, richness, and wonders. A new chapter for my family began last night. I’m excited to live my way into it.
For those of you jumping into this blog for the first time, I’ve been recounting my recovery timeline. I am now 34 months free and healed of the mental/emotional symptoms, still battling the physical waves.
And the story goes……
I got home from Sierra Tucson thinking that I “should” be healed. I
wanted needed it all to be over. It had been a grueling nightmare of terror, anxiety, pain, emotional and spiritual turmoil. But of course it wasn’t over. In some strange ways, it was just beginning.
The first few months after the cold turkey were indescribably unbearable. BUT, I KNEW it was withdrawal. As frightening as it all was, I kept telling myself, “It’s just withdrawal. It will go away.” But after six months, the weasel voice of worry crept in and whispered,”This is you un-medicated. You’ll live like this the rest of your life.” Not only did I have to battle the symptoms of benzo withdrawal, now I had to battle the hopelessness that settled down around me.
The mornings were by far, the worst time of the day. I’d wake and feel decent for about 30 seconds, then the tingles started. Next someone poured lighter fluid down my spine and tossed a match to it. My teeth hurt. Back of head felt as if it would explode from internal pressure, my bones ached, muscles twitched, pulled, spasmed and burned, bugs crawled under my skin, bees stung me, jaw throbbed, I broke out in blisters, ears rang like screeching tea kettles, my eyes burned and looked like I as a junkie, my hands tingled and had too much energy in them they felt like they would explode, my belly inflated and throbbed, and I was dizzy, weak, woozy, and felt as if I was being pulled down. I had a constant sense of motion. And a few other things…
Hard to wake up day after day to that severe degree of illness. Not knowing when (if ever) it would end. At 6-12 months off I still had panic, the death obsession, strange fears, intense moments of terror that would wash over me, visual disturbances that were very creepy and auditory problems. I did drive on the freeway some, but the DR was scary. It made my depth perception very challenging. My life was very small. I traveled only a few blocks. Most days, walking more than half a block was too difficult. I was too dizzy and had too much head pressure. I can’t tell you how many times I wanted to give up. It was like trying to swim through wet cement.
What helped the most was TOTAL acceptance and TOTAL surrender. Those are not actions, they are not something that you DO, they are STATES. They are something that you FEEL. I also gardened. As if my life depended on it. (It did.) By now, if you’ve read a few of my posts, you know that my front yard garden became a haven for the neighborhood. I put out dog biscuits and water for the pooches being walked. I hung a tin framed chalk board and wrote inspirational statements. Soon people from all over were stopping by. I created an amazing, loving community. They all helped me hold on. I love them all so much.
In some ways, the journey of recovery TRULY began in those months. For that was when my withdrawal became REAL. (Trust me, it had been horrific all along, but now, the reality of it hit home.) I could no longer live in the fantasy or denial that I was going to be healed soon, or that I would escape the financial ruin withdrawal can create. I had to let go and let God. I was not in control. Clearly.
6-12 months out was the hardest for me in many ways. The severe cold turkey symptoms were gone, but in their place rushed in the pain, the ongoing head pressure, etc… and it stayed and stayed and stayed. (I woke at 4 a.m. this morning due to head pressure and body pain. It hasn’t left completely.) 6-12 months off was when I knew I had to put on my big girl panties and face life on life’s terms. There was no cocktail, no pill, no man, no money, no nothing, that was going to save me. There was just me and God, and ME was pretty fucked up, so basically, there was God. But being in withdrawal, God was a scary notion to me. So I FELT alone, even though I WAS NOT alone. I didn’t get over my fear of God and eternity until around 18+ months off.
By the 6-12 month mark, my family and friends were burnt out. Everyone was tired of benzo withdrawal. I needed a lot of support still, but people were too worn out to give me what I needed. It made the months very dark indeed. But I got up every day and faced whatever I had to face. I felt whatever scary thing I had to feel. I pushed myself out the door and into life. I retreated to my couch or bed when it got unbearable. I cried. I cursed. I laughed. I screamed. I kicked. I danced. I prayed. …. I just held on. Day after day after day after day after day.
That’s how you do it. That’s how you get to the other side and recover. You hold on. You don’t kill yourself. You don’t reinstate or add other meds (or booze) that hit GABA receptors. You swim through the cement as best as you can.
This is my 5th Mothers Day in recovery from benzo withdrawal. I am hopeful that next Mother’s Day I wont have even ONE symptom left. I guess I’ll find out next year.
Enjoy this beautiful day.
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.
I had a very traumatic taper and then a cold turkey. It is still hard to write about it, as I don’t have a great deal of distance yet from it and I am still sick but recovering slowly but surely.
When the black depression, anxiety and overwhelming emotions, and intrusive thoughts, etc, lightened, I got a sense of my old self. The first time it happened was September 8, 2012. I remember I told my buddy Don, another benzo survivor, that I felt good. I remember I cried tears of joy that the darkness had lifted. But of course, it hadn’t really. Looking back on that day I was still terribly impaired. But, the feel good emotions of the day were great and an enormous welcomed relief from the incessant day in and day out horror I had lived before.
I would have times when I was very excited about being engaged in life, and the excitement always turned into something nasty. It would make me anxious in my body, or rev up other symptoms. It was as if I had very little in the way of any “braking” mechanism. Everything over stimulated my poor central nervous system.
I also had the sensation of time going very, very, very fast, almost like a whirring inside, whenever I got happy and had focused energy on a task at hand. It was not a welcomed sensation, and in fact was very uncomfortable. The first few months my old creative self started peeking her head up above the relentless symptoms, it was a challenge. I still had some lingering self-hate types of thoughts that withdrawal brings, and I felt raw and exposed, a naked self suddenly in the world. That may not make sense, but how does one communicate the sensations and emotions of benzo withdrawal?
To date, I am much better and I can even work with clients in a therapeutic garden. But I know, deep down, that even today’s version of “Me” is still not truly the Me I will be once all of my receptors have healed.
If you are in the phase of healing where you feel yourself coming back “online,” and it is unsettling, don’t worry. It seems to be a common phenomenon. You may not experience it this way, but if you do, please rest assured that in time, it smooths out, just like everything else in withdrawal.
I had a few business meetings where I was so elated over some brainstorms that my mind felt like it was in a hamster wheel, turning and turning, faster and faster. It was not pleasant. I knew this was not who I was. Or was going to remain. So I accepted it and allowed it to just “be.”
Now, the anxiety that develops when I am happy, is more manageable. It still can produce too much energy for my CNS, but it’s not as bad as is used to be.
As you come back to your old self, (actually, you wont be who you used to be, you are going to be one kick ass, warrior, fearless version of your old self, trust me) don’t stress about how it feels. Allow things to take their natural course and know that in time, you are going to wake up and just “BE.” No more thinking about withdrawal. No more weirdness, pain, burning, tingling… whatever. You are just going to go about your business. I can see that happening more and more in my own life.
Also, I don’t sweat the waves tooooo much. (Ok. I DO text my benzo buddy Mary or Linda and whine sometimes….) as I know they will pass. I took a nap today from 3 to 4 pm. (YES! A NAP!! I can do that now!!) because my fatigue was crushing. Instead of worrying about when it will go away, I just took care of it by resting.
Do your very best to accept. Wherever you are on your journey. Whatever the symptoms. As long as they are not life threatening, accept as best as you can. Bliss told me this and it is truly the best advice. When I try to run, or yearn for something other than what my life is at the present, the emotional pain increases.
Turn to that which scares you. Face it.
In 12 step programs we talk about fear this way: It used to be that we said, Fuck Everything And Ran….. now… its Face Everything And Recover.
Thank you to all who have donated to keep this blog going. I hope it continues to help others to hold on and walk through the valley of the shadow of death… benzo withdrawal… and keep going till they are on the other side.
Two weeks ago I received a phone call from a woman who had kicked benzos over a decade ago and has been helping people ever since. She was a wealth of information. In all of her years of looking for the “holy grail” to help people heal from benzo withdrawal, she said the closest thing she has found was the GAPS diet. I was intrigued so I bought three books from the website. www.gapsdiet.com
The diet makes sense. If indeed people with “leaky guts” have psychological problems, it could explain why some of us can taper with minor problems and others are flattened by the process.
I am starting the diet this week and will report if I find it helps at all. I am holding at my dose per my new doctors orders, so I may not be the best test case. But it will be interesting to see if I feel better overall.
The woman I spoke with claimed that people who followed the diet had a significant reduction in symptoms. I am hoping to heal my gut before I start to make any more cuts. ( Or at least start healing, as healing will take time I am sure.)
I have no affiliation with the GAPS diet website. I don’t receive any compensation if you buy the books. I am passing on the information because it sounds as if, at least in theory, it can help those of us in benzo withdrawal.
If any of you are on the diet or start, and have information on how well it works, or doesn’t work, I welcome you to write me and share your stories.
I hope everyone is having a great memorial weekend.
To healing out guts and our brains, which are directly tied to each other!(FYI the gut is now thought of as the second brain)
When the darkness of benzo withdrawal overtakes my rational mind, (the part of me that trusts I am healing) and I silently scream “I want my life back!” I am reminded by something powerfully innate in my soul: there is nothing to mourn.
Benzo withdrawal IS my life. There is no need to mourn what was, because there is only now. The past is past. That is true for everyone, not just people going through benzo withdrawal. When we accept what we have on our plate now, we suffer less.
Sure, I miss being able to get out and do things I used to do. But I know that in this time of recovery, life still has purpose. I am, as Eleanor Roosevelt put it, “tasting the experience to the utmost.”
I don’t want my old life back. I want the life I have right now to be as full as it can be given my new limitations. I don’t want to squander these months, or the coming years in recovery by being closed off to the experience I have now.
I like to think that I am like the caterpillar that transforms in his chrysalis, his wings of freedom growing and ready to take him to places he could only dream about as a caterpillar. My down sized life in benzo withdrawal is my chrysalis, holding me, until it is time for me to fly.
I don’t want my old life back. I am excited to walk, day by day into my new life, one that has been forged by the fires of withdrawal, making me stronger than I ever knew I was.
Just for today, let go of your grief for what was. Look for signs that this life today, is transforming you into a healthier, happier person. Then tomorrow, do it again. Let go. Accept. Your healing is taking place just as it should.
Stop wanting your old life back. Accept this life now. Taste the experience. Allow it to change you into a new, healthier you.
To your growing wings of freedom,