Phoenix rising: long-term user, extreme insomniac, emerges from the ashes

[[MT...]]

Aw shucks, Theway2, thanks. I had some people I encountered that had similar stories with whom I'd do the same thing. In some ways hearing how long and hard their suffering was was frightening but it also gave me hope that I could make it if I just hung in there. I recently turned 58 and I found myself thinking how I didn't think I'd have the courage to make it this long...not during a difficult childhood, PTSD, depressive episodes, etc. then wd. But the folks on BB were a big part of giving me that courage to keep breathing. When we're there for each other, we've all got badass inside of us! :smitten:

 

MT

[[Sh...]]

Your stories and strength get me thru my difficult days. Thanku for sticking around to help the rest of us even though u have healed. It means so much 

[[Ta...]]

Honestly, I have so much love for all of you and am so thankful for you. It is such a blessing to not only receive support but also to give it.

 

I am so sorry we are going through this, of course, but couldn't imagine going through hell with a better bunch of badass warriors. We will fall down, suffer, and pick ourselves back up which makes the "victory" even sweeter.

 

Right now, I'm still suffering from severe fatigue and cog-fog and slept 4 hours last night. And honestly, when you remember what it was like to sleep only ten minutes at a time, it really puts it into perspective.

 

Glad you are seeing 4 hours, Shayna. Hopefully this will continue for you! And then hopefully more hours to come.

It is amazing we can survive like this though!

 

Today I had a cog-fog fart. I have had so many but today was a tad embarrassing. I made a special trip to the Post Office to mail a Hallmark card, but totally forgot to put a stamp on it. I had to ask someone to go into the bin and find it for me to make sure. Of course, I didn't put a stamp on it! They were so gracious and I got the stamp and off it went. I don't even know what they would do with a card with no stamp. I put a return address, but I cannot imagine they would waste time/energy giving it back to me. So glad, I remembered at the last minute.

But this is nothing compared to when I forgot to pay taxes in 2018! Uh yeah, nightmare.

[[MT...]]

There are so many reminders here that there is kindness in the world. My way of staying sane is focusing on the kindness and gratitude instead of the heartbreak and misery life can send our way. We just found out that we can't see our kids for either holiday and we're missing our son's wedding. I'm feeling pretty low right now but I'm working hard to focus on what's under my control and the things that can bring some light in this darkness.

 

I'm praying for sleep for all of you. :smitten:

[[Sh...]]

Honestly, I have so much love for all of you and am so thankful for you. It is such a blessing to not only receive support but also to give it.

 

I am so sorry we are going through this, of course, but couldn't imagine going through hell with a better bunch of badass warriors. We will fall down, suffer, and pick ourselves back up which makes the "victory" even sweeter.

 

Right now, I'm still suffering from severe fatigue and cog-fog and slept 4 hours last night. And honestly, when you remember what it was like to sleep only ten minutes at a time, it really puts it into perspective.

 

Glad you are seeing 4 hours, Shayna. Hopefully this will continue for you! And then hopefully more hours to come.

It is amazing we can survive like this though!

 

Today I had a cog-fog fart. I have had so many but today was a tad embarrassing. I made a special trip to the Post Office to mail a Hallmark card, but totally forgot to put a stamp on it. I had to ask someone to go into the bin and find it for me to make sure. Of course, I didn't put a stamp on it! They were so gracious and I got the stamp and off it went. I don't even know what they would do with a card with no stamp. I put a return address, but I cannot imagine they would waste time/energy giving it back to me. So glad, I remembered at the last minute.

But this is nothing compared to when I forgot to pay taxes in 2018! Uh yeah, nightmare.

 

Cog fog fart? Haha tata I love it 

 

No sleep last night but I’m ok. I drove a 3 hour round trip yesterday, 6 months ago driving my kids to school was too much.

 

We are warriors it takes so much strength to keep fighting. Today I’m so greatful for u guys x u keep me in check! No I’m not going crazy, look at all these people going they the same thing as me. It’s a blessing to have u

[[Sh...]]

There are so many reminders here that there is kindness in the world. My way of staying sane is focusing on the kindness and gratitude instead of the heartbreak and misery life can send our way. We just found out that we can't see our kids for either holiday and we're missing our son's wedding. I'm feeling pretty low right now but I'm working hard to focus on what's under my control and the things that can bring some light in this darkness.

 

I'm praying for sleep for all of you. :smitten:

 

I’m so sorry mt things are so bad in us right now. Sending u lots of love and hugs x

[[Ta...]]

3 hours round-trip is a huge accomplishment, Shayna! So happy for you. It is a good sign of some forward momentum. Healing is not linear as we know, and you may go backward and move forward again. I was not fit for driving much in the first year off clonazepam. My boyfriend drove me a lot of places or I took Lyft though he worried about me being in a strange car with a strange person in my condition but all went well. So grateful to be able to be driving again!

 

I also had a 3 hour sleep last night but I am told by my therapist that listening to meditations still helps protect/restore the myelin sheath around our neurons. Sleep is what restores our myelin sheaths from all the depletion/abuse/stress they encounter throughout the day. So when I wake up at 3 or 4 am, which had become the norm, I listen to meditations and even if I dont fall back asleep (I rarely do) she informs me that the relaxed state of mind is still helping restore me.

Even though I still feel terrible!

 

Do you guys listen to meditation videos/music/mantras?

[[Sh...]]

I know mtfan did a lot of visualization. I listen to rain, ocean or some sort of meditation when I go to bed. Last night I didn’t hear the end of meditation but woke up after an hour. Not sure I went back to sleep after that or may have been very light if I did. But I feel ok today other than vision disturbances are a bit difficult today. I’m seeing a new therapist today so looking forward to getting some extra help x

 

Thanks s77 I am pretty amazed I did it. Some days my hubby worries about me driving on so little sleep, but it’s not like I’ll fall asleep at the wheel! 

[[Ta...]]

So true! You won't fall sleep at the wheel! Instead, I have often felt like a wired trucker on methamphetamine. 

 

I just love hearing listening to water sounds- the ocean waves landing on a beach or the sound of rain. So soothing.

Hope your appointment with the new therapist goes well and it is a big help to you. A good therapist can make such a difference is relieving you of emotional burdens and helping you reframe stuff. I am so grateful that my therapist is very understanding of the damage that these psych meds do and knows a lot about benzos. I hope yours is psych-med smart too, though just having an empathetic ear is very helpful.

[[Sh...]]

Oh yes me too tater!

 

Hmmm not sure about therapist he seemed confused by most of what I said. He wants me to focus on the self bashing I do (I do) and be as nice to myself as I am to others. This is going to be hard I am very self critical. But it’s a start. I don’t like why they dig around in ur past when u say u had a good childhood and they’re still trying to find an issue with ur parents. I don’t like that. But I’ll stick with it snd see how I go

Mom glad u have a good therapist Tatar who understands all this benzo mess. I don’t think this guy does but I still need to work on other things anyway x

[[MT...]]

There's been some really interesting research about meditation's protective effect on the brain. It does many of the same things sleep does. Sure doesn't feel as good but it least it's something.

 

Shayna, I'm a therapist and your therapist is offering something legit. Self-criticism activates the nervous system (sympathetic activation and all the cruddy chemicals that come with that) which is detrimental to sleep. That makes self-compassion a powerful intervention. I really like this person (and website):https://self-compassion.org/ and this guy: https://chrisgermer.com/  I'm planning on listening to his book The Mindful Path to self-compassion again in the next week or so because I've been slipping some.

[[Ha...]]

I am glad I found this thread, because I'm really struggling with the taper.  My main symptoms for a long time were insomnia and cog fog/memory loss, but the sleep has gotten somewhat better (thankfully!) in recent weeks but yet I am still having a great deal of trouble with memory and cognition.  I know for sure my memory was excellent before I tapered, and up to when I tapered below what probably was the lowest therapeutic dose of lorazepam (Ativan), .5 mg, a little over a year ago.

 

As you can see from my signature, I am still tapering.  I work a demanding job and it has gotten harder and harder as I go lower in the taper and my symptoms worsen.  Like TaterTot, I worry all the time that this is early dementia caused by benzos, and that my life as I know it is coming to a close.  I try to do everything I can to stay strong, telling myself just to keep going one day at a time and to give myself every chance to heal (which includes completing the taper and being kind to myself, as well as exercising and eating healthy and trying my best to get good sleep).  But this is the scariest thing I have ever gone through, and I have gone through some really scary things before.

 

Lately I find myself becoming depressed, which I have hardly ever been in my life before (I went on the benzos for anxiety, which has been a problem for me for most of my life).  I don't know whether I'm becoming depressed because of the cognitive issues, or whether the depression is happening as a separate withdrawal-related issue.  Either way, it feels awful.

 

Anyway, sorry to go on and on but I am struggling and scared.  I am glad to see, MTFan, that you are doing so much better but worried that you are still experiencing significant cognitive problems after being off the benzos for a long time.  I'm still praying for healing but about half the time now, I'm just convinced that I will never get my brain back.  It's really hard.

 

Haimona

[[Sh...]]

Actually that’s what tater said too, I’m going to work harder at the meditation in that case.

 

Yes I think he’s right about self criticism. I’d never be so critical of others ever, I don’t know why I do it to myself he’s right. My homework is to acknowledge that more and find ways around it. To be more aware of it I guess.

 

It makes so much sense ur a therapist! U would be an an amazing therapist mt! So kind and strong. Thanku for that link, I will read that tonight. I know I have work to do because that’s what lead me down this path in the first place. Feeling like I was never enough, like I had to perfect every single thing I did. It’s exhausting to think what I did to myself now. Always pushing. 

 

At least I have the clarity now to see what happened coz at the time I was on the grind and too stubborn to notice what I was doing to myself. Type A on roids 

 

Anyway... lesson learned. Self care is so important

[[Sh...]]

I am glad I found this thread, because I'm really struggling with the taper.  My main symptoms for a long time were insomnia and cog fog/memory loss, but the sleep has gotten somewhat better (thankfully!) in recent weeks but yet I am still having a great deal of trouble with memory and cognition.  I know for sure my memory was excellent before I tapered, and up to when I tapered below what probably was the lowest therapeutic dose of lorazepam (Ativan), .5 mg, a little over a year ago.

 

As you can see from my signature, I am still tapering.  I work a demanding job and it has gotten harder and harder as I go lower in the taper and my symptoms worsen.  Like TaterTot, I worry all the time that this is early dementia caused by benzos, and that my life as I know it is coming to a close.  I try to do everything I can to stay strong, telling myself just to keep going one day at a time and to give myself every chance to heal (which includes completing the taper and being kind to myself, as well as exercising and eating healthy and trying my best to get good sleep).  But this is the scariest thing I have ever gone through, and I have gone through some really scary things before.

 

Lately I find myself becoming depressed, which I have hardly ever been in my life before (I went on the benzos for anxiety, which has been a problem for me for most of my life).  I don't know whether I'm becoming depressed because of the cognitive issues, or whether the depression is happening as a separate withdrawal-related issue.  Either way, it feels awful.

 

Anyway, sorry to go on and on but I am struggling and scared.  I am glad to see, MTFan, that you are doing so much better but worried that you are still experiencing significant cognitive problems after being off the benzos for a long time.  I'm still praying for healing but about half the time now, I'm just convinced that I will never get my brain back.  It's really hard.

 

Haimona

 

Haimona x everyone on here struggles cognitively. I was on the phone earlier today trying to be concise and the words just wouldn’t come to me. In real life I am very quick witted and it’s devastating how slow my brain is now. Some days I say out loud... come on brain work goddamit!

 

We are at the end of our tapers, things get really hard at the end for many people, we can’t start to really heal until we are off, then we will get there. I worry all the time about dementia, but I guarantee if we got tested we wouldn’t have it. It’s just the Benzos slowing everything down x

 

Sending u so much love x

[[MT...]]

Haimonia,

 

The cognitive symptoms are real and very upsetting going through wd. There's not much you can do other than remind yourself over and over that they are temporary and compensate the best you can with tools. Tools like reminders from sticky notes, online calendars, digital assistants, etc. When I was at my worst I took little notes during phone calls (even with friends and family) so I would remember enough to talk to them next time. Just the act of taking notes helped some with memory. But mostly I had to lower my expectations and catch those thoughts that it was dementia and remind myself it was temporary over and over and over.

 

Your brain will return to your baseline, maybe even better than while you were on Ativan, once you've been off benzos for a while. It's a scary passage though because you're used to having a more accessible brain. You miss your tool! Some of what you're feeling is grief.

 

My memory still has some issues but I have prexisting mild ADD and Chronic Fatigue Syndrome. When I'm fatigued my IQ seems to drop. So that's not a wd issue.

 

As for depression, that seems to be part of the package deal for many. Things that really helped me, and continue to help me with my lifelong battle with depression, are gratitude, exercise, social connection, adequate time to relax, and humor. This past year I've been taking this probiotic that supports the GI bugs associated with positive mood. When I'm having more mood stuff, sometimes I take it twice a day: https://smile.amazon.com/gp/product/B079QX7TLH/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

 

Hang in there. This is so hard but it does end.

[[Ta...]]

Wonderful advice from all. I love how meditation calms my brain down and centers me throughout the day. One of my worst symptoms during acute and lasting for several months was obsessive looping self-critical thoughts. I now am amazed at how steady my thinking can be. Still, I do get into self-criticism and regret A LOT (perseverative rumination) so my therapist mentioned interrupting the thoughts by yelling "STOP!" (if no one is around) or pulling a rubber band on my wrist, etc. Interrupting the thought and training my brain to stop it. My brain supposedly will auditorily record the need to stop the self-bashing. Just let people around you know that you may be yelling STOP every once in awhile so they know whats going on, lol.

Also, I will look for the Chris Germer book, sounds fascinating.

 

There are so many interesting practices and theories out there, like the healing the Vagus Nerve. DSNR. EMDR. Mindfulness. Meditation. I guess its good to keep trying and find out what works for you.

 

My symptoms were so bad at the beginning though I could literally do nothing but shake/shiver in bed with ruminating horror-show thoughts. So compared to that, I'm awesome.

 

I also just went though a four-course ketamine-infusion treatment for depression. Depression was always my core issue. When I first found ketamine in late 2014, and discovered that it was effective for my treatment-resistant depression, it started me on this path of getting off the  drugs. The best thing is that ketamine has no side effects. However, this latest round I found that it wasn't working so well anymore. Just like everything, things can stop working.

 

I am left with focusing on nutrition, mindfulness, aerobic exercise, spiritual connection. Social connections are hard for me right now because of the isolation of the pandemic, but I am involved in a few Zoom groups and I have my live-in boyfriend.

 

Haimona and Shayna, most people do report getting their cognition back. A few others have admitted to some issues, but overall they are so happy with outcome of their life, they just adapt. It is hopeful, at least.

 

Just babbling on tonight- sorry!

 

[[Sh...]]

I love the advice ur therapist gave u tater x here is what I do...

 

This is a clip from a movie I watched called to the bone. There’s some advice Keanu reeves gives Lilly Allen at the end of the clip. It made me laugh. That’s what I say when I am self critical or doubting my recovery to make that voice stop! I hope it makes u laugh 

 

 

Is ketamine GHB?

 

 

 

 

[[Ha...]]

Haimonia,

 

The cognitive symptoms are real and very upsetting going through wd. There's not much you can do other than remind yourself over and over that they are temporary and compensate the best you can with tools. Tools like reminders from sticky notes, online calendars, digital assistants, etc. When I was at my worst I took little notes during phone calls (even with friends and family) so I would remember enough to talk to them next time. Just the act of taking notes helped some with memory. But mostly I had to lower my expectations and catch those thoughts that it was dementia and remind myself it was temporary over and over and over.

 

Your brain will return to your baseline, maybe even better than while you were on Ativan, once you've been off benzos for a while. It's a scary passage though because you're used to having a more accessible brain. You miss your tool! Some of what you're feeling is grief.

 

My memory still has some issues but I have prexisting mild ADD and Chronic Fatigue Syndrome. When I'm fatigued my IQ seems to drop. So that's not a wd issue.

 

As for depression, that seems to be part of the package deal for many. Things that really helped me, and continue to help me with my lifelong battle with depression, are gratitude, exercise, social connection, adequate time to relax, and humor. This past year I've been taking this probiotic that supports the GI bugs associated with positive mood. When I'm having more mood stuff, sometimes I take it twice a day: https://smile.amazon.com/gp/product/B079QX7TLH/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

 

Hang in there. This is so hard but it does end.

 

I've been meaning to thank you for this, MTFan.  It's really, really helpful to hear this.  Yes, it is grief, I'm sure.  I have always had a quick and strong brain, memory, and intellect.  It's not only hard to know how to work and function without that, it's not only scary to imagine it never coming back -- it's hard to know what has become of "me," the me I have always known before this withdrawal process.  I am grieving, although I still hope to be restored to "me."  I hope so much that you are right and I will return at least to baseline (I would gladly take that, and would definitely not object to being even sharper than I was pre-taper). 

 

Also, thank you for validating what I am going through.  It means a lot.

 

TaterTot, I really appreciate what you said too.  I hope and pray we both will be restored.  And yes, I also recommend the Chris Germer book, and Kristin Neff's website and self compassion in general.  It's a literal life saver.

 

Haimona

[[Ta...]]

I love the advice ur therapist gave u tater x here is what I do...

 

This is a clip from a movie I watched called to the bone. There’s some advice Keanu reeves gives Lilly Allen at the end of the clip. It made me laugh. That’s what I say when I am self critical or doubting my recovery to make that voice stop! I hope it makes u laugh 

 

 

Is ketamine GHB?

 

It is at 1:40 in the YouTube clip and it is sp perfect "F-Off voice!" So much YESSSS! I will just imagine Keanu Reeves telling me to do that and it will be even more effective. I think that man is so beautiful!

 

No Ketamine is not GHB though they both have been abused as club drugs. In a low monitored dose ketamine acts as a dissociative agent, an anesthetic, an anti-depressant. I go to a clinic and lay in a Lazy-boy and a nurse puts an intravenous needle/catheter in a vein and administers a 10% ketamine to saline solution for 45 minutes. I relax, watch an ocean beach channel on YouTube and let the ketamine do its work. It has been to shown to grow neurons and the hair-like axons so the synapses communicate to each other.

With depressed peoples these hairlike structures are wimpy and not working, and ketamine has shown to get them working again.

You do feel it though, while on it. It goes away pretty fast once they stop the infusion. While on it I have see colorful images moving around minds eye like a constantly moving screensaver. Its very cool and I wish I could remember it!

 

Haimona, love everything that you said and I completely agree. I just heard from a fellow cognitively impaired sufferer and he said he is doing so much better (he was suicidal over his loss of intellect). He projects another 6 months before he is back to normal or better and is making allowances for how non-linear our healing is. I am restored in the faith that our brains can be remarkable healers from major injury. It was the message I needed today because I have been spiraling a bit thinking of dementia.

 

It is time for me to channel my inner Keanu Reeves and tell that negative voice inside to "F- off!" and know it will probably take me longer than most, but I'll get here, hopefully.

 

Hope everyone had a decent Thanksgiving!

 

[[st...]]

I love the advice ur therapist gave u tater x here is what I do...

 

This is a clip from a movie I watched called to the bone. There’s some advice Keanu reeves gives Lilly Allen at the end of the clip. It made me laugh. That’s what I say when I am self critical or doubting my recovery to make that voice stop! I hope it makes u laugh 

 

 

Is ketamine GHB?

 

It is at 1:40 in the YouTube clip and it is sp perfect "F-Off voice!" So much YESSSS! I will just imagine Keanu Reeves telling me to do that and it will be even more effective. I think that man is so beautiful!

 

No Ketamine is not GHB though they both have been abused as club drugs. In a low monitored dose ketamine acts as a dissociative agent, an anesthetic, an anti-depressant. I go to a clinic and lay in a Lazy-boy and a nurse puts an intravenous needle/catheter in a vein and administers a 10% ketamine to saline solution for 45 minutes. I relax, watch an ocean beach channel on YouTube and let the ketamine do its work. It has been to shown to grow neurons and the hair-like axons so the synapses communicate to each other.

With depressed peoples these hairlike structures are wimpy and not working, and ketamine has shown to get them working again.

You do feel it though, while on it. It goes away pretty fast once they stop the infusion. While on it I have see colorful images moving around minds eye like a constantly moving screensaver. Its very cool and I wish I could remember it!

 

Haimona, love everything that you said and I completely agree. I just heard from a fellow cognitively impaired sufferer and he said he is doing so much better (he was suicidal over his loss of intellect). He projects another 6 months before he is back to normal or better and is making allowances for how non-linear our healing is. I am restored in the faith that our brains can be remarkable healers from major injury. It was the message I needed today because I have been spiraling a bit thinking of dementia.

 

It is time for me to channel my inner Keanu Reeves and tell that negative voice inside to "F- off!" and know it will probably take me longer than most, but I'll get here, hopefully.

 

Hope everyone had a decent Thanksgiving!

 

Is your friend still doing better?  I’m so terrified I have dementia or Alzheimer’s now.

[[Ta...]]

Stereo Tokyo, I don't know to whom you are referring to. If it me, then I will say its a constant work in progress. I ruminate on some days more than others but it is good to have strategies like distraction, gratitude for the good things in life, and therapy. However, the insane looping thoughts from the beginning of acute have passed, thankfully. Those are hideous.

[[st...]]

Stereo Tokyo, I don't know to whom you are referring to. If it me, then I will say its a constant work in progress. I ruminate on some days more than others but it is good to have strategies like distraction, gratitude for the good things in life, and therapy. However, the insane looping thoughts from the beginning of acute have passed, thankfully. Those are hideous.

Thanks. I was referring to you. You mentioned hearing from another person suffering from being cognitively impaired. I was wondering if they’re still ok. The thoughts don’t bother me as much as the brain fog/cognitive impairment.

[[Ta...]]

Oh yes, that guy feels as if he has improved significantly over the past year. He is now in his second year of healing. He told me he thinks he should be completely healed in the next 6 months or so, barring any setbacks. It was amazing news, because he suffered truly evil cognitive impairment like myself. He gave up an intellectually demanding career for a landscaping job and doubted he would ever be able to return. He didn't say exactly, but it sounds like if I he wanted to go back to the job, he would be able to handle it now. It is very good news!

 

My brain fog/cognitive impairment is my most signifiant symptom and worries me tremendously. I worry about getting early dementia but feel as if I have been living with dementia since I essentially cold-turkeyed. Getting off the benzo so fast (or even at all) was the worst thing for my brain health. I f I had to do it over again (besides never taking a benzo) I would have tapered a very very long time to be more gentle on my brain.

 

I sympathize, sterotokyo and hope you see improvement soon. If you want o DM me and talk about it, feel free.

[[Tr...]]

MTfan, thank you so much for your post. Here I am crying and shaking after reading your words. Similar as you, polydrugged. I cold turkeyed 3 meds. 

I will definitely try to follow your advice. Finding joy in others. Gratitude. Helping others. Thanking the brain for doing its best. 

You are badass for being so positive and kind and compassionate even in pain. Here I am not knowing if I have strength to survive this day, struggling with feeling like a victim... you were helping others in pain. 

I learned so much from you today.

"It might get better. It does get better. I think I can."

Your testimony about faith as a life preserver resonated strongly too. I feel so tired right now, mental and physical. How else did you refill your willpower tank?