Progress Update, Success & Setbacks

[[Ti...]]

It was in October 2021 when I realized what was happening to me. I had been taking 0mg to 2mg of K a day, as per Dr's directions to take as needed. I was all over the place. This was the second time I was put on K after a complete dysregulation of my nervous system due to chronic stress and underdeveloped emotional regulation skills. The two times in my life that my nervous system became completely dysregulated occurred when I was traveling. It was in September 2021 that I tried to cold turkey as per the quick google search of how to get off K. I read symptoms can last for up to 2 weeks. I thought, ok, I can bare anything for just 2 weeks and then i'm done with this hell. Unfortunately that is not how this works. After 5 days of Zero K, I started to get seizure-like symptoms. I called my GP who said to try a taper of 1 month, but even that recommendation didn't sit right with me. I found the Ashton manual, and from there found a benzo wise doctor. Thankfully, she was able to stabilize me enough to continue a taper. It wasn't easy, with lots of waves - but i'm so thankful for windows that came and went over the course of my taper. Although in the windows during my taper i didn't feel 100%, it felt like 100% because of how ill I was feeling on the bad days/weeks. It is only in hindsight that I now see that I was not feeling 100% and that the serenity of feeling well again was more than I could imagine during the taper. It took me over a year to taper. I'm now 18 months off K. I've had long windows of 3-4 months at a time of feeling well. I've had waves that have been all over the place in intensity and duration, but the last wave I had was the shortest wave and the least intense since jumping off 18 months ago. The one thing I will say is that although there doesn't seem to be a chronological progression of decreasing intensity/length per wave, the windows are progressively feeling better and better. After my most recent wave (January 2024) not only did I feel more stable but my sense of smell starting coming back. I forgot how trees smell as they dry from a heavy rain fall. Or how asphalt smells during a hot day. Or how wind makes a hushing sound as it passes through crevices. I'm becoming even more present in my environment and less hyper vigilant to my internal sensations. I remember when the cry of a bird would make me feel even more depressed, anxious, thinking how can that bird be chirping when there is so much suffering in the world. Any change in my environment would trigger me, the sound of someone mowing their grass - extreme jealousy would come up, thinking they are so lucky to be doing something so mundane and normal. My cell phone would ping, someone texting me, asking if I want to come to a function. Some days there would be a seed of interest, wanting to go and socialize. But quickly dampened out with the thought and fear of my emotional and physical uncertainty for that future date. I could say yes. But then i'll just have to cancel on the day. And the thought of having a responsibility of texting someone back to cancel on a day that I wasn't feeling good scared me straight. I wanted no responsibility, I could barely handle myself. But then a window would come. And the birds chirping brought me joy, and feelings of thankfulness. Filled with gratitude to be able to hear such a beautiful sound. The sound of a mower and the smell of fresh cut grass filled my lungs with the promises of summer. I felt hope, and I appreciated the mundane aspects of life. I didn't have this appreciation or gratitude before Benzo use, or during use. Is this terror worth the life lessons it's teaching? Although when the waves come the hopelessness and questioning of, is this worth it comes, I do know the windows keep proving that it is worth every tear, terror, pacing, shaking, ear ringing, vomiting, ideation. The connectiveness you feel in the windows, with the people you love, your pets, the environment, the appreciation for your body and what it has done for you, it comes. I'm waiting for the day that it lasts. But maybe it's time to start living instead of waiting. I have hope for all of us. Mind body spirit, take care of yourself, be gentle, don't push yourself when you're in a window thinking you are "dragon lady" (what my sister calls me when I try to push myself when i'm feeling better). My triggers are insecure attachments and travelling. I need to stay away from those things that even on a perfect day sends my system into stress. Instead of needing to prove to myself that I am Back and Normal, I need to just be. To prioritize my health in every way. I've put IVF on hold, I don't know if I will ever have children. And although the thought of disappointing my husband pains me greatly, I now know that the best gift I can give myself, and him, is my health. And if that means I have to be gentle with myself, then I am now choosing to do that. As I slowly enter into another window, I have hope. But also trepidation. Perhaps I rather live in today forever, even if it's not 100%. My symptoms are minimal today. And although I know the future has better days ahead, I also know that hardship is also a given in life. Uncertainty, constant work and pain are life's inevitable experiences. My nervous system isn't ready for those days. But I think i'm ready to keep trying. Maybe one day I'll go a year without a wave. One day it'll be once every so often. I'll keep my updates on this thread. 

 

December 2018 - nervous system dysregulation, became extremely anxious, depressed

January 2019 - August 2019  .5mg of K daily

September 2019-November 2020 .5mg once a week 

off benzos in December 2020-May 2021 (was able to jump and be ok) 

May 2021 nervous system dysregulation (2nd time) 

June 2021-August 2021 .5mg to 2mg sporadically per day 

September 2021 - tried cold turkey 

October 2021 - started back on a taper from 1mg

November 2021-July 17 2022 last dose of K  

throughout my taper I had waves, but I was still able to function. Bad waves where I would pace all day with A would only last a couple days

the windows during my taper were basically me feeling numb with some physical annoying symptoms like tinnitus, jaw pain, electricity in veins, toxic naps. If my mental symptoms were dampened out, I considered that a window. 

July 17 2022 to September 2022 window  (dampened of mental symptoms, felt derealization but was able to fake it pretty easily) physical symptoms still present 

October 2022 - wave, I went on a work trip with my boss. Travel being a trigger, it set me off. But the wave only lasted a week and it wasn't that intense (mentally) physically all the symptoms were still there 

November 2022-December 2022 - window, dampened mental symptoms, numb, derealization but not as bad. more present and happy 

January 2023 - bad wave I had just undergone IVF treatments and the hormones and fentynal set me off. This wave lasted 4 weeks, and was very intense. Lots of pacing 

February 2023-May 2023 - window, first time I didn't just feel a dampening of mental symptoms, I felt more alive, and more online. physical symptoms that held on were tinnitus and jaw pain, along with electricity in veins 

June 2023 - Bad wave, i tried going on a trip to Mexico but at the gate I turned around and said to my family i'm so sorry I can't go. This wave was Intense and lasted 4 weeks. lots of pacing, lots of bad dreams. I had a dream that I blended my fetus..... At this time I was still really pushing to continue with IVF, but obviously my subconscious was telling me DON''T you are not ready. 

July 2023-September 2023 - window. again felt more online, more steady

October 2023 - tried going on a trip to San Diego where I was a keynote speaker at a conference. I couldn't get on the plane..again... had to cancel. set me into another wave for 4 weeks. (BE GENTLE TO YOURSELF, KNOW YOUR TRIGGERS - STRESS IN THE #1 REASON WE CAN FALL INTO WAVES <- More of a reminder for me) 

November 2023-December 2023 window again felt more online and apart of this earth. mental symptoms zero, physical the tinnitus was still there but the jaw pain and tingling was less apparent 

January 2024 - fell into a wave. I got sick and my body hurt, it felt similar to the benzo flu. I fell into a bit of a spiral but this wave I felt alot more steady... it felt like the waves of the water wasn't pushing my body around like a rag, but instead my legs were firmly planted. and although I had mental and physical symptoms it wasn't bringing me to my knees. I was better able to use my body work skills to help calm myself, and my cbt skills to try and not catastrophize. Also the symptoms waxed and waned throughout the day tremendously. One moment I'd feel so terrible, and the next minute I'd feel such a sense of calm, but then the terror would come back and then by night I would be fine. It was all over the place. This wave lasted 3 weeks. 

February 2024- coming out of the wave into a window, I feel hopeful. But am really hoping I get more than a couple months of a break. 

 

 

 

[[ne...]]

Really enjoyed reading this and keep up the strong work. 14 months off K myself.