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13 months into a setback


[Wi...]

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All I can do is cry the last few days. I am over a year into a setback that made things 1000x worse and I haven’t seen ANY improvement. I have windows when I feel 80-90% but each and every wave is more and more brutal. I am barely hanging on. My baby needs me and I am a complete mess. 

 

My whole range of symptoms:

- pressure, tension in body, it’s terrible

- internal burning, soul on fire, caustic sensations inside that paralyse me

- electricity inside, jolts from brain down and smaller shocks deep in the body

- buzzing, vibrating inside (sometimes mild in the background, sometimes deep and intense)

- adrenal surges (not very often) 

- brain symptoms (buzzing, moving, feels like a balloon is being pumped) - when that this I feel like I am going to go into a seizure

- overstimulation

- restless feelings in different muscles, sometimes like they want me to move them but not as severe as I have seen aka but I am terrified it will get that bad soon

- problems with sleep (most days I can sleep but some days it’s terrible)

- deep muscle/bone toxic and gnawing pain going hand in hand with the tension, burning

- all sorts of paresthesias (way less often than the other things)

 

My symptoms come and go, change a lot during the day. In a wave they are brutal. In a window it might be nothing or just one symptom very mildly and I can ignore it. So I go between living and fighting for my life… I just need some hope. I am really scared. 

 

———

My timeline:

April 2020 - floxed by Cipro

Until Feb 2021 - polydrugged with many psych meds

Jul 2022 - consider myself 95% healed 

Aug 2022 - SETBACK from clomiphene, I get pregnant, symptoms get worse but aren’t as bad as now

Nov 2022 - another SETBACK from Fosfomycin, I get terrible immediately but even worse within a few weeks, still getting worse slowly week by week with some windows in between

Feb-1st half of April 2023 - horrible wave, don’t think I will ever come out of it

2nd half of April-end of June - symptoms start lifting, I have my baby, feel like so am healing even though I was heavily medicated in labour, I start living again, fully functional

July 2023 - slowly symptoms start getting worse without a trigger 

end of July-2nd half of Aug 2023 - symptoms explode, I feel so bad I can barely handle it 

end of Aug-first 11 days of Sept 2023 - started getting better again, not great but definitely improvement and I start living again, I am fully functional

Starting Sept 12, 2023 - a horrible wave again, even more severe symptoms. 

 

 

 

 

 

 

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Hi @[Wi...]

:hug:

I know this is scary for you, I can feel your pain, I am sorry that you’re been in a setback for so long.  It's so frustrating to feel well for a while, then thrown back in hell again.  I think 80-90% windows is a good sign your body is trying hard to right itself,  you have to hang in there, It's going to turn around again.    I feel for you, it must be incredibly  tough trying to care for your baby, you have to hang, your baby will have her mum back soon.   You will get through it, just keep going, try and stay positive, remember you are stronger than you think you are

Thanks for posting your history, you've had a rotten time of it, but its going to be okay, you will recover. 

 If you would like to copy and paste it into your profile, members can view it and offer relevant advice.

Profile => Edit profile (top-right of profile banner) => Add succinct use/taper/withdrawal history to 'History' text box => click 'Save' (bottom-right).

Magrita:smitten:
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@[Wi...] I totally agree with all that Magrita posted above. You are indeed one of the strong ones, and being a Mother whilst having a hard time, is something that most do not have to deal with. I think that you having windows is a good indication that healing is happening and it takes time...more than we would like. Hang on and please know that you are not alone. Stay Strong.💖 Peace and Healing.

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@[Wi...], it’s not hopeless! Look at the times you felt well and healed, that is good healing. Your body was very stressed with medications and the toll that pregnancy takes on a woman’s body. Additionally, you are a mom and that’s a big job. 

I echo what @[ma...]said, you are an incredibly strong woman. This strength will carry you through this wave to better times. You’ve got this!

pianogirl :smitten:

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Hi! Yesterday was a lot better than Monday and today it’s been okayish but now some symptoms have emerged, they are not too bad, though. For me it’s a rollercoaster. 

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It’s all so weird! On Friday and Monday I thought I was dying and yesterday I had a full window since midday until bedtime. Today something is happening again. So sick of this. Does anyone have this rapid cycling of symptoms?

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Mine are changing very rapidly as well.

I am desperately trying to find out if this rapid cycling depends on something or not. To this point I have noticed that light diet and light excersise and distraction might change the course, but very difficult to tell. 

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For me it’s always been like that. My symptoms are getting worse. I just don’t understand why :( I have seen zero improvement to be honest. It would be completely different if my symptoms were very bad at the beginning and slowly but steadily improving. For me it is just a worsening of symptoms. My legs are the main source of misery today. I have this internal burning (had it yesterday all day mildly all over, like acid in veins, not skin) in my legs today, they buzz, twitch, hurt, burn. Like they want to jolt. I am so done with this shit. And I have only now developed burning in my brain. Mild so far but what the duck. Will it ever pass if it is still getting worse? I doubt that at this point. 

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I’m 14 months off. Still having “severe” waves triggered by stress. And when I’m in a window (no mental symptoms) I still have bad tinnitus which honestly I’m totally fine with compared to any akathesia or anxiety depression. 
 

im in a wave right now. And my mental symptoms are cycling a lot. I can go from one min of panic to then feeling numb to then calm then back to panic. Or the afternoon I’ll be depressed. But then at night I have a good sleep. But then wake up with full anxiety. But then end of day I feel ok and just tired. It’s all over the place.  But I will say. When I am in a window I have noticed that I am feeling better. Each window I feel more at peace with contentment. And joy.  And then I get dragged back into a wave that feels like it’s acute. But it’s not. It’s just next to such a good window any wave feels so terrible.  You’re being dragged back into a nightmare that is all too familiar. It’s very cruel. But then a window pops up. And you go wait. Life is amazing. And you take a breath that isn’t weighted. You feel so present and calm. That nothing can touch you. But life comes at us. And the healing journey is still going. And we get dragged back into something we thought we had conquered and left behind.  I have hope one day it will be behind us. And the windows will be longer. And they will stay. 
 

you can do this. You’ve gone through the worst parts already. Keep going. each day is bringing you closer to full healing. 

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  • 3 weeks later...

No windows, from one discomfort to another. I have no idea how to come out of this. I feel the symptoms and my mind constantly loops about them. Yesterday RLS/aka kicked my butt (weird sensations in legs travelling from buttocks to calves), today the weird sensation is in my mid back/stomach. I never feel normal, always something is off. I can only cry. And why it’s all still getting worse is beyond me. I haven’t seen anyone get worse without a reason and heal.

I can’t even handle my baby today with all her crying. 

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@[Wi...],

Benzo withdrawal doesn’t always need a reason in terms of a flare up of symptoms. It just happens, something in the cns still needs to find balance. 

My heart goes out to you, I know you wish to have time with your baby. You will though and it will be quality time for both of you. :smitten:

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I am not really in withdrawal per se, it was a chain of reactions to meds :(  but I guess the process is the same 

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I envy those who hit rock bottom early on and start getting better with time. I seem to have developed very bad RLS. My legs ache, burn, tingle and so on, the sensation travels from my calves to knees to thighs to buttocks, rinse and repeat. It’s all day long for, sometimes gets better for no reason, and does get better when moving but still there is no terror so it’s not like it’s full aka. I get anxiety with this when it hits my mid back and stomach but other than that it’s just this RLS feeling in legs. This is new, I only had this every few days very mildly in the past, like maybe one night per week just a little bit. But now it’s severe and with me all the time for the last 3 days. And it never affected my calves until the last two weeks or so, when it began subtly one day, went away and now it’s there a lot. It messes with my sleep as my legs get stiff and tingle and whole body starts feeling odd. The all over tension is bad, it’s not anxiety or terror, it’s just this weird stiffness and pressure coming from my CNS. It seems that everything I got after the “setbacks” in August and November 2023 started as a mild discomfort only to progress in the future. It’s terrifying. I have seen only deterioration, no improvement. No windows anymore, just when it switches a to another symptom I get relief from the previous one for a while. But I feel bad or horrible most days.   If I ever improve I will be shocked… Because every time I think “wow, I got so much worse but when that calms down I will finally start improving” my body has new surprises for me. I feel there is something I am doing wrong because why else I would be steadily getting worse. It was not the case before the “setbacks”. 

 

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It’s all just too weird. My legs have a life of their own. Not necessarily an urge to pace but definitely to chop them off. Crawly feelings in muscles, deep aches like the flu that feel like terrible weakness, twitches, spasms, shooting pains, electric sensations, skin paresthesias sensations travel from feet up to my butt with different places being attacked, like calves, inner thighs. Then they just have pain, which feels way better than the creepy feelings but awful anyway. My legs got attacked about 3 weeks ago to that extent and it’s been getting worse and worse. I don’t understand how I can be getting so much worse so long after my last drugs. It feels like something is broken and not only dysregulated. It feels like I am constantly exposed to something that harms me but I haven’t taken any meds or supplements since June (the c-section). The worsening began about a month after my c-section but it hasn’t stopped getting bad. It’s terrible now. I cannot see how this will ever start improving. I understand how someone gets acute akathisia or whatever that is from something or gets it in withdrawal but this feels like it will be getting worse indefinitely whereas for most it gets bad quickly and then starts improving. 

 

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I am out of my mind and terrified. How can these symptoms be still getting so much worse… They are all over the place changing every few hours. I know I am posting the same crap all the time but that’s my reality. Going round in circles. I have nobody to talk to about all this, don’t want to scare my family. I am way worse than a year ago, and I thought it was bad back then… It was, but now it’s just a whole new level of hell. I am holding my sleeping baby and crying over the sensations that roam my body. An hour ago it was my arms, now my thighs. This sickening burning tickly sensation deep in muscles. It moves but now it’s the thighs. Evenings are usually better so just counting the hours but when the night comes I dread the mornings. I read that breastfeeding lowers dopamine and I still breastfeed so I am wondering how stopping will impact all this.

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How’s your support system ? Are you able to talk to your partner about what’s going on ?  Have you thought about getting a benzo coach so they can be a source of support ? Angela peacock has been great for me. 

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I was thinking about this. She has been polydrugged too, right?
 

I mean my partner is aware but I am not sharing too much regarding what I feel as he is sensitive and I don’t want to traumatise him as he has to work and be there for the baby when I have a horrible time. Other than that I talk to one person online and that’s it, my friends do not understand, they obviously want to support me but I just don’t feel understood. My mum sometimes helps with the baby but she doesn’t understand either. My dad doesn’t believe it’s been caused by drugs. 
 

Now I feel electrified, the leg feelings are gone but now I am feeling low level electrocuted, tense and sick. And head pressure and a feeling I will have a seizure. Loving it.

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Ya, she was polydrugged. And she has another client who is pregnant or was recently pregnant... Anyways, You need support! I really suggest reaching out to her to set up a video call. 

Also - have you watched the Dr Josef Dowering video with the lady who just had a baby? Not sure if i'd be triggering, or cathartic. 

If you need another buddy, feel free to reach out to me in my inbox and I can send you my contact info. (I'm a 33 yr old Lady from British Columbia Canada). 

 

One more thing.... When family and friends don't acknowledge or even minimize or even look at us with a Blank face when we try to explain (or convince them) that we AREn't crazy and that this is brain injury, it is traumatic and fuels the dysregulation. You are not alone. You are not crazy. You are injured. Just as you soothe your baby as she cries. Sooth yourself, because you deserve to be comforted. You are in a lot of distress. Continue to be kind to yourself. 

 

Edited by [Ti...]
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Even though the mornings come with darkness and dread. The evening is always promised. 

 

that was my mantra for a lot of my withdrawal (and still is during waves), as my symptoms would lift (at varying degrees) during the evening. If we can make it till nightfall. We have done a good job. 

 

 

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Yeah I would like to keep in touch so go ahead with the contact info. I am 32. 
 

I will try to schedule a call. I have seen the interview, I am actually in touch with the girl that was interviewed, she has been supportive. 

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