I was 38 months out on the 23rd. Here is what I am still experiencing since my cold turkey.

I wake up (mornings are still the hardest) and feel sorta decent in my body/mind for about 30 seconds. Then the symptoms wash over me.

Almost my entire body tingles. My back, buttocks and legs are by far the worse. It is not pins and needles like when a body part falls asleep, it is a stinging, electrical, painful, hard to describe tingling. I hate it.

I have muscle spasms happening in various areas all at once. My skin burns, mostly on back of arms and back. My back tightens up and I feel as if I am being crushed.

My vision is bad in the mornings. I still see double sometimes, or it is like I have vaseline over my eyes.

The bottom of my feet burn/tingle.

My hip bones/sockets hurt very badly. Often at night, if I am asleep on my side, they ache so much it wakes me up. Bones in my legs and arms hurt too.

It feels as if someone is squeezing my left bicep.

My mouth/jaw hurts. The pain moves around, but it is often on the left side.

I still get that horrible empty/starving feeling in the pit of my stomach.

The back of my head feels painful, and odd. Like my brain is swollen or moving around. Hard to describe.

My spine still hurts or burns (slightly) some mornings.

My thoughts are pretty bad all day, but the mornings are the worst. It’s all death, doom and gloom. I do my best to distract but I have very little control over my thoughts at this time. I do my best to tell myself they are just thoughts, they can’t hurt me, and they are not indicative of reality, but it is of little comfort.

I am not too anxious when I remain in bed. The anxiety kicks in when I get up and get going. I a still very weak when I stand in the shower. My heart rate goes up and my legs get shaky. I feel I could pass out some mornings.

Stress of any kind is hard to cope with. I went to dinner with a friend and she asked the waiter a million questions, keeping him at our table a long time. I got very anxious about it. Not mentally anxious, but rather in my body. Everything tenses up and the burning kicks in, the tingles, my head feels full of pressure, I feel dizzy. I have NEVER in my life had anything like this before this recovery syndrome started.

I still have head pressure and dizziness. Some days I feel I may be having a stroke, it is so intense. I do my best to remind myself it is just my brain and body recovering from benzo withdrawal, but some days it is hard not to believe I am slowly dying from some crazy illness.

I still have burning tongue. My hands still cramp up horribly.

I am still anxious (not my pre-existing) and depressed. The depression has been pitch black some days. It has gotten better.

My sleep is still not refreshing. I wake feeling groggy and a few hours later the exhaustion feels overwhelming.

My leg muscles still hurt. I still twitch.

My ears ring 24/7. I don’t think they will ever recovery. I do my best to ignore it.

I still have night sweats sometimes.

I get intrusive memories and thoughts. I still obsess.

I still get a feeling of a tight band around my head at times.

I am sure there are other things, but this is a good overview of how I feel.

When I started this journey I thought withdrawal was like having the flu: you get sick, rest, recover, go on with your life. I had zero idea that this was a “syndrome” and it could take many, many years to recover.

I have a crashed immune system. I believe the stress of withdrawal caused it. I am doing my best to repair it with good nutrition. I don’t know how to tease out what it causes and what down regulated GABA causes (or what ever else is going on due to the drug damage.)

Some mornings I wake up and feel I can’t go on another day. I dread my life. Other mornings I can talk myself into coping, somehow. Some days I still pray for death, and other days I pray for healing or for the strength to cope. I talk to God often during the day.

Some days I am 100% sure I will heal and go on to have a good life. Other days I am 100% sure this is my new normal and I will never be able to do much more than garden and curl up on my couch and write. Go to dinner close by once in a while. Or visit my kids once in awhile. I fear I will be sick the rest of my time here on the planet.

The worst symptom of all is the fear. It permeates everything. I do my best to give it over to God.

The evenings are better. The stress of the day is behind me. It is quiet. There is not much I have to do. I can watch a movie or write. I don’t have to talk to anyone.  I stay up till midnight often, enjoying the quiet. Some nights my body symptoms are pretty bad, other nights they are minimal. On the nights they are minimal, I stay up late enjoying it. I go to bed knowing I will wake up and it will start all over again.

I am doing my best to accept that I  have a major health issue that keeps me from doing and being all I want to do and be. I pray the serenity prayer often.

I have talked to those who have healed: Bliss, Don, Geraldine. Don healed the quickest. Geraldine said it took 11 years for her to feel recovered. She said she started getting better at 5 years off. I’ve been hearing five years from others too. A friend in AA jumped from 120 mgs of valium. She said the anxiety did not get better for 5 years. It finally went away. It’s hard to hear that I could have more years of this ahead of me. But that is a possibility.

When this wave of symptoms started, I felt utterly broken. I had thought I was almost healed. To be thrown back into the snake pit was more than I thought I could bear. But here I am. Coping.

I’ve been awake for an hour and a half. The heavy fatigue is now rolling in and my brain feels heavy in my skull. Thoughts are more difficult to sort through. I get pretty bad cog fog.

I’d give almost anything to be healthy in mind and body. I’d love to wake up and jump into my day, eager to do what needed to be done, to feel joy and happiness, to be at peace with my thoughts and feelings. I listen to my neighbors drive off to work and I am so envious. They are thinking of the day ahead. They are not obsessing about death, about illness. They are not burning and tingling. Their brains don’t feel damaged in their skulls.

Will I ever be healed? WIll I ever enjoy being alive again? Time will tell. I hope so. I pray so.  I pray that we all heal and go on to enjoy our lives.

 

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