Insomnia - Want to know how many of you are still suffering?

[[Sh...]]

Are any of the long hauler members still suffering from insomnia?

If the answer is yes, could you please post how many years off the benzos you are and how much sleep you get a night, also could you also mention if you ever get sleepy or not. Did you taper or C\T?

If the insomnia has resolved or improved, could you also tell me how long it took you to notice improvements and how's your sleep now.

Thanks...

Edited February 21 by [Sh...]

[[...]]

I just hit 27 months and I still have insomnia. It’s not as bad as in the beginning. I usually get 4 broken hours a night now. For the first 20 months I could go 2 or 3 days without sleeping at all. I unfortunately was forced to ct by the doctor. At this point I think it is permanent. I haven’t seen very many stories where long term insomnia ever got back to normal. I don’t even post much anymore because after 27 months with very little improvement I have given up hope of healing. The scariest part for me is that I still don’t get sleepy. At night when I go to bed I close my eyes while still wide awake and somehow after an hour or so I will go unconscious and then 2 hours later I wake up wide awake. I close my eyes again and just try and think positive thoughts and usually go unconscious again for a couple more hours. Also when I wake up it’s like my brain is a toxic soup, it’s vibrating and burning, my body also vibrates and buzzes. It takes a couple of hours for that to go away. I still have lots of other symptoms but Insomnia is worst symptom in my opinion. You cannot do anything when you’re exhausted all day long. I hope and pray this doesn’t happen to you.

Edited February 21 by [...]

[[mo...]]

Insomnia has gotten better for me - used to be 3 hrs now it is mostly 5 broken ones. I am in 7-8 years now.  Sleep got better maybe 3 years ago. I ct's off benzos and everything else when I wound up in the hospital for depression, Doc there just sent me into terrible withdrawal over the course of 3 weeks. I had been on prescribed benzos for decades.  I was so messed up I didn't even know what was happening to me. I eventually found Jennifer Leigh online telling her story and she mentioned benzo buddies. So here I am still and sometimes I feel like I am losing my mind because I was so stressed about what was happening in my brain I neglected what was happening in my body. Wound up needing a new heart valve at some point and a pacemaker after that. And then I had a somewhat mild stroke. I was previously hit be a car while exercising walking thinking a little bit delusionally. I survived all that and I now take all kinds of heart meds and I was so proud of myself that I had kicked benzos, ad's and everything else this fool of a doc prescribed for me. Due to a incredible restlessness I started walking and over the years I have walked over4,000 miles (Fitbit told me). So walking (while listening to music) became my main tool to get through this. But now I have breast cancer and taking hormone blocking meds before surgery and my bones are greatly affected and I can't walk the way I used to.  But with my broken heart I still manage to walk in the house making sure I get 30-40 minutes of cardio (good for the brain) for now but what about after with the chemo? What, or what will become of me? Thanks for listening. Just I hope I will survive all of this.

[[Na...]]

@[mo...] Just wanted to say you are an inspiration. You have been through the wringer yet you are still fighting.

You are definitely made of stern stuff.

[[Ti...]]

[[Ti...]]

On 21/02/2024 at 11:30, [[m...] said:

Insomnia has gotten better for me - used to be 3 hrs now it is mostly 5 broken ones. I am in 7-8 years now.  Sleep got better maybe 3 years ago. I ct's off benzos and everything else when I wound up in the hospital for depression, Doc there just sent me into terrible withdrawal over the course of 3 weeks. I had been on prescribed benzos for decades.  I was so messed up I didn't even know what was happening to me. I eventually found Jennifer Leigh online telling her story and she mentioned benzo buddies. So here I am still and sometimes I feel like I am losing my mind because I was so stressed about what was happening in my brain I neglected what was happening in my body. Wound up needing a new heart valve at some point and a pacemaker after that. And then I had a somewhat mild stroke. I was previously hit be a car while exercising walking thinking a little bit delusionally. I survived all that and I now take all kinds of heart meds and I was so proud of myself that I had kicked benzos, ad's and everything else this fool of a doc prescribed for me. Due to a incredible restlessness I started walking and over the years I have walked over4,000 miles (Fitbit told me). So walking (while listening to music) became my main tool to get through this. But now I have breast cancer and taking hormone blocking meds before surgery and my bones are greatly affected and I can't walk the way I used to.  But with my broken heart I still manage to walk in the house making sure I get 30-40 minutes of cardio (good for the brain) for now but what about after with the chemo? What, or what will become of me? Thanks for listening. Just I hope I will survive all of this.

You’ve been through so much. I’m so sorry. Your post made me so sad. It just doesn’t seem fair, what life throws at some of us, but I have to believe there is a purpose underlying it all. I had breast cancer in 2012. Multiple surgeries, chemo, reconstruction, hormone therapy…the whole nine yards. If you have any questions or need support please feel free to DM me. You got this! Are you in the states? 

Edited February 23 by [Ti...]

[[ma...]]

I am almost 24 months old and I spent many months as an x-ray, 2 hours I woke up and two more hours.Now I suffer a setback for almost a month in which I sleep about 2 hours.It's hard to bear it.

[[mo...]]

Nathan - thank you for your supportive reply. I feel so scared now to take on more but I guess I have no choice. May  be strange to say but the last two times I wound up in the hospital - I was picked up from the street and carried somewhere else (by ambulance). It almost seemed easier than the anticipation I live with now about my future surgery,

13 hours ago, [[N...] said:

@[mo...] Just wanted to say you are an inspiration. You have been through the wringer yet you are still fighting.

You are definitely made of stern stuff.

 

[[mo...]]

3 hours ago, [[T...] said:

You’ve been through so much. I’m so sorry. Your post made me so sad. It just doesn’t seem fair, what life throws at some of us, but I have to believe there is a purpose underlying it all. I had breast cancer in 2012. Multiple surgeries, chemo, reconstruction, hormone therapy…the whole nine yards. If you have any questions or need support please feel free to DM me. You got this! Are you in the states? 

thank you Tinkered I may just take you up on that...   Yes I am in the states -are you?

I have no idea what is the purpose of the difficulties life throws at us. Sometimes I just feel like I'm being punished somehow and other times when I think about it differently I am suddenly aware of the strength I have stumbled upon and the incredible friend I have found in myself who just keeps pushing me forward. I love to write poetry during this journey and I recently wrote this:

"Emerging from the depths of my suffering

my arms are overflowing with the treasures I found there"

 

[[mo...]]

3 hours ago, [[m...] said:

I am almost 24 months old and I spent many months as an x-ray, 2 hours I woke up and two more hours.Now I suffer a setback for almost a month in which I sleep about 2 hours.It's hard to bear it.

Of course it's hard to bear it and sleep is so important for our brains - deep sleep, REM. There is a purpose to all of it. Hang in there. It will get better - eventually...

[[Ti...]]

13 hours ago, [[m...] said:

thank you Tinkered I may just take you up on that...   Yes I am in the states -are you?

I have no idea what is the purpose of the difficulties life throws at us. Sometimes I just feel like I'm being punished somehow and other times when I think about it differently I am suddenly aware of the strength I have stumbled upon and the incredible friend I have found in myself who just keeps pushing me forward. I love to write poetry during this journey and I recently wrote this:

"Emerging from the depths of my suffering

my arms are overflowing with the treasures I found there"

 

That’s beautiful. I think you are on to something there; self love, forgiveness, growth, empathy and compassion to give away freely because we’ve found it in ourselves. That’s my take anyway. Oh, how the smallest joys in life bring the greatest comforts now. 

[[fl...]]

I have just reached 24 months off Klonopin and still have insomnia. I can be really sleepy but when I get into bed nothing happens. I could run a marathon at midnight 🤣.  I don’t want a sleeping medicine. I have tried Melatonin, CBD oil, valerian tea. The tea helps a little to feel relaxed, Lavender scents. Nothing helps