Where I’m At Now - Getting Close to 5 Years Out

I got a question from Hopefull01. I replied, of course. But as I was writing I thought I’d post my answer to the general forum. I’m hoping it may help someone!

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I went through so much of the increasing tics, grimaces, twitches, jerks, etc. I believe it is akathisia. It got so bad at one point (April 2018, about a year and a half in) that my son took me to an emergency room. The doctor there insisted that I wasn’t in benzo withdrawal since it had been out of my system for a long time. No shit Sherlock. He had no idea about the damage benzos can cause to the central nervous system. He gave me one Haldol (which I tried to refuse) and told me to see my doctor. Luckily my doctor was pretty smart about benzo withdrawal syndrome. He said no to Haldol but gave me a prescription for Keppra. It is an anticonvulsant. When I woke up after the first night of taking it I felt so happy. It was the first night in many weeks where I slept and didn’t wake up in extreme terror. But over the next few days I realized I felt like a zombie. Just totally out of it. We adjusted the dosage and I hought it was better. Here are the potential side effects:

 

    Common side effects of Keppra include: infection, neurosis, drowsiness, asthenia, headache,    nasopharyngitis, nervousness, abnormal behavior, aggressive behavior, agitation, anxiety, apathy, depersonalization, depression, fatigue, hostility, hyperkinetic muscle activity, personality disorder, emotional lability. (www.drugs.com)

 

I mean, YIKES! Plus all the other horrible symptoms were still going on. And, other than my son who lives two states away, I didn’t have any support. And I had gained so much weight. As the months went on I kept getting more and more depressed. I didn’t want to kill myself but I wanted to die. I wished a big truck would run me over. But with my agoraphobia I barely left my house, so how was that going to happen? This is called passive suicidal ideation. Finally in October it got so bad I called a hospital psych ward, they said come as soon as possible. I spent 13 days there. It literally save my life. They figured out that the Keppra was wrong for me. They tried Gabapentin but that didn’t sit right with me (plus I hated taking drugs) so they weaned me off that.

 

At about the 3 year mark I started finally having some windows where I actually felt a little human. Slowly, slowly I actually started healing. I don’t have the akathisia any more. I don’t exactly know when it disappeared, but it did. I still have anxiety. I get tired and overwhelmed pretty easily. Very rarely I feel depressed. But overall I have a simple but good life.

 

You are in very early days. I don’t know how long you were taking benzos and other drugs. I was taking Clonazepam for 26.5 years. Ugh! All under several doctors care. When I was at a hospital for depression (December 2016) they cold-turkeyed me off the Clonazepam. 😳😳😳 I didn’t even know that t was taking a benzo or that stopping cold-turkey could kill you! And here I am mostly healed.

 

I’m here to tell you that you can do it. Just take everything a day/hour/minute at a time. Try not to focus on “when will I be better” instead thinking, “I’m going to get through this day.” The thing that helped me most was distraction. When you feel like crap just distract. I couldn’t read much but I played games, watched TV, went down many rabbit-holes on YouTube, practiced breathing and meditation.  And as each day ends realize that it’s one day behind you. One day closer to healing.

 

All my best to you!❤️

Thank you Lala, I could not agree more. Day , hour , minute it's all about time. That's why I gave up on magic bullets , supplements,  crazy diets , or weekly dr visits for more pills. It was an ENT Dr that got me in this mess and now I look at Doctors different. Time will tell and doubt is our biggest enemy. Thank you music

Hi Lala, were your symptoms mainly physical? Mine are horrible intrusive thoughts, have eased off bit but never go. It is encouraging you didn't have a windiw until 3 years off. I'm 32 months but never had a window, does help us long term suffers to hear stories like yours.

Hi Lala, were your symptoms mainly physical? Mine are horrible intrusive thoughts, have eased off bit but never go. It is encouraging you didn't have a windiw until 3 years off. I'm 32 months but never had a window, does help us long term suffers to hear stories like yours.

 

Leann,

 

I used to just hope for a window. I felt so alone and scared because others here would talk about them but to me they were like unicorns. It wasn't like I was in the depths of despair and then I had a day that was wonderful. Things just generally started improving in very small ways. And at some point I thought, "Wow, I've been doing so much better." And then I had some horribly depressing setbacks. But, you will get there. There's just no way to figure out when. Patience really is key. And the belief ... hope ... that you will heal. Your brain just needs time to fix up all the connections.

 

I had some physical symptoms like tinnitus, a weird boaty sensation that made me feel like I was going to fall over, and of course all the tics and jerking, etc. But much more mental symptoms. Anxiety, depression, terror, intrusive thoughts, and on and on. At about the 34 month mark I started intermittent fasting and healthy eating (no sugar or artificial sweeteners, no processed foods, veggies, fruits, good meat or fish -- kind just healthy). I had gained so much weight during this process, and actually was at a very high weight in the beginning. At first I was thinking I felt better because I was losing weight. But then I thought I was getting better because I was eating well. And now I think eating well helped, but nearly three years had gone by and I was focusing on healthy behaviors and ... once again, back to distration.

 

I hope all the best for you with your healing!

Thank you Lala, I could not agree more. Day , hour , minute it's all about time. That's why I gave up on magic bullets , supplements,  crazy diets , or weekly dr visits for more pills. It was an ENT Dr that got me in this mess and now I look at Doctors different. Time will tell and doubt is our biggest enemy. Thank you music

 

Hey Music.

Thanks for your response. Yes, time is the only thing that heals in benzo withdrawal syndrome. I read your profile info and you've been through a lot yourself. I, too, look at doctors differently. And I google EVERYTHING! Haha! Literally. Not just about drugs and such. What "condition" were you diagnosed with that caused the ENT to prescribe benzos? For me, I've had sleep issues since my teens. In 1990 I went to a sleep clinic, they did a sleep study and found I had nocturnal myoclonus (similar to RLS, but involuntary jerking). They prescribed Klonopin. I asked what it was and was told it's a muscle relaxer. Hmmm. Wrong! I took it for a little over 26.5 years. Several doctors prescribed it in various places I lived. I feel like I want to be Cher, "if I could turn back time."  But, since that is definitely not possible I'm just happy I've been off that crap for close to five years.

 

I hope your symptoms are improving. But, just know it will eventually happen. All my best to you! 

 

(I'm a music person, too. Hence my name lala (singing) sing (singing) me (me)!

Hello La La,  I am a 79 year old opera singer, still sing, but have had to change what I sing.  I am five years out and still have issues as I had two surgeries and the only way they would operate is if I took a Benzo, Ativan, to cope with my high blood pressure.  Because of that I went back in withdrawal, and thankfully have good and bad days.  I was given Valium off and on for 40 years, basically every time I stopped, I went into Benzo withdrawal and that was diagnosed as Fibromyalgia and I was put back on 5 mgs of Valium, a vicious cycle.  After my husband died six years ago, I cold turkeyed and was given Flexaral (a muscle relaxer) and Clonidine for seizures,  (I took neither of them as they have their own issues and are hard to withdraw from) though my doctor still denied that I was in Benzo withdrawal and still does.  I had a terrible two years but managed to perform, regardless, not knowing which notes would not sound...basically vocal chords are muscles and they were very definitely affected.  I also had two seizures and a lot of other symptoms, too many to list right now, including severe muscle pain and insomnia.

As horrifying as your suffering was, this post is absolutely beautiful. I'm so happy for you. I stopped wondering when I will heal. Just taking it second by second, minute by minute. I know I'm healing. Thank you for your post. It brings hope.