20 months.

[[st...]]

Hi friends. Wishing everyone some sort of relief today. I'm coming up on 20months and having a brutal wave. I wonder who else is struggling this far out?  I don't want to bring anyone down.  I guess I think that if I find someone in the same boat this far out I won't feel so alone. I'm going to have bloodwork done next week. I'm thinking I have some underlying issue going on. My immune system is shit. Anyone protracted with some hope??

[[dj...]]

I’m only 10 months out so can’t relate entirely, but I hope it’s just a wave that will end soon.  I’ve done bloodwork a few times and nothing ever shows up.  Good to rule it out though.  
 

You have an awesome birth year by the way, if I’m assuming correctly from your screen name.  

[[ja...]]

Hi Steph.  I'm almost 21 months out and you are most definitely not alone.   It seems like I've been in some version of a wave since 10 months out.  With very few windows.

I am sleeping in fits and starts, but sometimes none or little for a week at a time... it's been accompanied with headache, light sensitivity..... and inner vibrating.    A bunch of other symptoms  too.   There have been gains, too.... but a bad wave can still put me back to the beginning.

I got scared like you, at 20 months.... I figured "I'm dying" or I have some wasting neurological disease...  I felt like giving up at one point...  

There are some of us here that are approaching protracted.  Luckily, I've heard from a few other struggling buddies who's time is similar to my own.   Some have reported the most healing between 3 and 4 years.   I know, probably not what you want to hear.   But for me, there is no going back to benzos.  So if I improve down the road.... I'll take it.

I've recently tried two supplements.   Before I couldn't handle any at all, but now it seems I can.... it's early days, but ashwaganda seems to cut me a break as well as Korean ginseng.

There is supposed to be a thread here for a protracted group.... maybe there already is.  If I find it, I'm joining.  I need support and I need to hear about possible long range improvements.    Thanks for checking in.....

 

[[gr...]]

Thank you for these posts. I have had a resurge of symtoms the past few days and it frightens me. Reading here calms that fear.

 

[[st...]]

Janiceh. Yes, waisting neurological disease is just how I would describe what I'm worried I have. Or atleast that's what it feels like. Thanks for responding. I hope you get some windows soon and some sleep. I also don't sleep. It's very broken. I toss and turn. I too feel gains when I'm in a window I feel so much stronger then I did even before this journey. Unfortunately I get waves every month that are intense and take me out. I joined the protracted group awhile back but decided it wasn't good for me. It scared the crap out of me but I hope it works for you. That's great that your tolerating some supplements now. That Means there's healing going on. I'm going to try cod oil. We shall see what happens. Hopefully you and I heal soon

[[ja...]]

Thank you steph.... I'll be watching for your progress..

[[Bl...]]

I am  20 months off.. still having a hard time .. right now having a wave in pain . At 11 months took an antibiotic and it mess me up .  What symptoms are you dealing with? 

[[Pa...]]

1 hour ago, [[B...] said:

I am  20 months off.. still having a hard time .. right now having a wave in pain . At 11 months took an antibiotic and it mess me up .  What symptoms are you dealing with? 

Hello Bluemia25, welcome to BenzoBuddies,

I've heard other members mention antibiotics causing them issues, which one did you take?  I'm sorry to hear you're still suffering this much, what symptoms are you experiencing?

We're glad you found us, I hope we can reassure you that you can recover, it just takes too long.

Pamster

[[Ba...]]

On 11/08/2023 at 18:26, [[s...] said:

Hi friends. Wishing everyone some sort of relief today. I'm coming up on 20months and having a brutal wave. I wonder who else is struggling this far out?  I don't want to bring anyone down.  I guess I think that if I find someone in the same boat this far out I won't feel so alone. I'm going to have bloodwork done next week. I'm thinking I have some underlying issue going on. My immune system is shit. Anyone protracted with some hope??

 

On 13/08/2023 at 11:32, [[P...] said:

Have you added any new medications or supplements, are you dealing with a stressful situation, any job or life changes, have you imbibed any alcohol?

Same her… I was sleeping better and then boom!! The Vice grip inner tremors set in again. 

[[Bl...]]

On 12/08/2023 at 21:41, [[P...] said:

Hello Bluemia25, welcome to BenzoBuddies,

I've heard other members mention antibiotics causing them issues, which one did you take?  I'm sorry to hear you're still suffering this much, what symptoms are you experiencing?

We're glad you found us, I hope we can reassure you that you can recover, it just takes too long.

Pamster

I took amoxicillin and I been to the dentist 2 times and had a reaction to the numbing stuff that I never had before .. I took amoxicillin in the past no problems .. this pill look different than I ever took .. I had bad muscle pain and nerve pain .. it took months to settle down and now I am in a bad wave I have fatigue and nerve pain and muscle pain and just feel bad., my Doctor wants me to try LDN but I am so scared too and a mri with contrast which I aM scare of how I will reacted to the contrast .. I don’t know how I will react.. I going to see if I can do it without 

[[Bl...]]

I took amoxicillin and I been to the dentist 2 times and had a reaction to the numbing stuff that I never had before .. I took amoxicillin in the past no problems .. this pill look different than I ever took .. I had bad muscle pain and nerve pain .. it took months to settle down and now I am in a bad wave I have fatigue and nerve pain and muscle pain and just feel bad., my Doctor wants me to try LDN but I am so scared too and a mri with contrast which I aM scare of how I will reacted to the contrast .. Idon’t know how I will react.. I going to see if I can do it without 

[[Bl...]]

Oh and my sleep is so bad! 

[[Pa...]]

29 minutes ago, [[B...] said:

I took amoxicillin and I been to the dentist 2 times and had a reaction to the numbing stuff that I never had before .. I took amoxicillin in the past no problems .. this pill look different than I ever took .. I had bad muscle pain and nerve pain .. it took months to settle down and now I am in a bad wave I have fatigue and nerve pain and muscle pain and just feel bad., my Doctor wants me to try LDN but I am so scared too and a mri with contrast which I aM scare of how I will reacted to the contrast .. I don’t know how I will react.. I going to see if I can do it without 

Many of us will react to supplements, medications and even foods while going through this, our central nervous is highly sensitized.  Please feel free to start a thread of your own so we can support you as you go through this.  And please put in the subject title your greatest concern so others can share their experience.

 

[[Ka...]]

Hello all,

I am about 28 months out and here is what i'm still dealing with:

Inner chest tremors/vibrations (almost daily)

Tinnitus (few days ON, followed by few days OFF)

Anxiety attacks with: palpitations, increased pulse, increased blood pressure, chest tightness, air hunger

Broken sleep (still wake up 2-5 times per night almost every night, but able to accumulate 7-8 hours nightly)

Feeling on edge, like there is an inner agitation building to a point where it feels like i am close to passing out or fainting, but not actually (almost daily)

 

Anyone else want to share their symptoms?

Thanks!

Karla

[[gr...]]

13 months out - poor sleep, crazy dreams and anxiety. But I can have a conversation, go for a short hike and am reconnecting with family. I was so not here for years and now I am present. Feels good. Stay on the path. 

[[st...]]

On 16/08/2023 at 14:33, [[K...] said:

Hello all,

I am about 28 months out and here is what i'm still dealing with:

Inner chest tremors/vibrations (almost daily)

Tinnitus (few days ON, followed by few days OFF)

Anxiety attacks with: palpitations, increased pulse, increased blood pressure, chest tightness, air hunger

Broken sleep (still wake up 2-5 times per night almost every night, but able to accumulate 7-8 hours nightly)

Feeling on edge, like there is an inner agitation building to a point where it feels like i am close to passing out or fainting, but not actually (almost daily)

Anyone else want to share their symptoms?

Thanks!

Karla

We have everything you mentioned plus others except the ringing ear has gone away. 

[[Co...]]

I have not posted here for almost 4 years after my last experience with Ativan. I had been off and on Ativan and Zoloft lightly between 2016 and 2019, but I feel that due to my sporadic use and me already being a highly sensitive person caused some issues with my CNS and kindling which has left my body susceptible to any brain altering substances, legal or ilegal.  

A quick story about an incident back in November of 2022, my wife made a fruit cake with fruit that had been marinated in brandy for 6 week. I have not touched alcohol in decades, and she assured me that the alcohol would be baked out. Long story short, I was sent into a wave for about a month with horrible brain, fog, occasional insomnia, and felt like restless leg syndrome throughout my whole body day and night (akathisia?). Anyway, I recovered from that and was grateful.
 

Now to my current situation related to this post about dental work. I recently had a lot of dental work done where I had a deep cleaning and nine cavities filled. There were two sessions of about 3 to 4 hours each over a one week period. I had some insomnia and nightmares after the first session, but didn’t think anything of it. Q week later I had my second session. After this last session I feel like it has put me back into a horrible wave with old and new symptoms. I had five different shots both sessions for a total of 10 shots of lidocaine. I’ve had insomnia, brain, fog, restless legs, full body muscle twitching, burning abdomen anxiety, tinnitus, and new one I have not had before that is most brutal which feels like body wide itching. The itching feels like when a sunburn is healing and you get those prickly feelings. It  everywhere from my head to my toe and feels constant. I do have some periods during the day where it calms down to almost nothing (is this a window?) for minutes to an hour, but I feel like most of the day it is present and very bothersome.  I had no idea that topical and local anesthesia was a big no – no for us withdrawal folk.

I hope I heal from this guys…I’m miserable. 😥
 

 

[[de...]]

Welcome back.   I am sorry you are experiencing some bothersome symptoms.  How long has it been since your last dental visit?   It seems like some people can get symptomatic after getting dental work, but it settles down pretty quickly.   I am sure it is no fun to feel as if you are going back to having symptoms, but it will pass.   Glad you have some moments during the day where you are not symptomatic.   Please keep reaching out and letting us know how you are doing.  

[[jo...]]

I’m so sorry you’re still suffering. 
I am almost 21 months off and still very symptomatic.  I have extreme burning brain like fire ants or hot lava in my cranial nerves. I also have the deep burning and electric nerve pain in my legs, neck, shoulders, and arms.
 

My legs and muscles feel like a wild bear ripping the tissues. I also have the awful anxiety and fear from the pain. Each morning the anxiety is at its worse due to the cortisol and adrenaline.  I wake up in pain all through the night and sleep with 5 ice packs around me. I have tinnitus as well but it doesn’t really bother me.

I’ve spent thousands on labs, mri, nerve conduction test, docs, neurologist and more. All tests normal. 

I never imagined that I’d be this far out with no relief. I keep hoping that each day will better but that has not been the case for me.  I’m so sad to be protracted and never experienced a window. 

I try to do all the distraction remedies  plus I swim in a cold indoor pool each day to try and soothe the burning. I’d trade any other symptom to make this burning nerve pain go away in my body. It’s absolutely soul crushing. 

The burning has been with me for 21 months; no windows. It’s excruciating pain. The past 3 months the symptoms have increased in intensity. I’ve read where sometimes people feel worse right before they turn a corner. If I could get a window, I wouid have more hope for healing soon. It’s just too much to endure for so long without any relief. Baylissa says some folks don’t get windows, sadly. I’ve met with Baylissa a few times, Dr. Jen, Angie Peacock and other coaches. 
 

I’m so sorry you’re having to endure difficult symptoms. What symptoms are you having? It’s just unimaginable that this is even possible.  You are not alone. I hope you feel better. 🙏