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13 months off - the horror never ends


[am...]

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hi,

im 13 months off c/t valium after 2 years of use (last dose august 2022) and i seem to be getting worse again....i just want to know if a resurgence of symptoms this far out is even normal. recently ive been completely emotionally numb, which has made me extremely suicidal and i found myself in a psych ward 3 weeks ago because of it, i have psychogenic fevers, a feeling of restlessness, which i didn't have during acute, im so scared its come on so late and i dont know why either. i am also getting pins and needles and electric shocks all over my body, its unbearable. and my visual snow has gotten worse. im so sensitive to light its hard to even look at a screen in the dark or drive at night. this never seems to end. im 26 now and this all started when i'd jusrt turned 25. i cant drink. i can barely go and see my friends because i never feel like im here. i fail to see any point in trying. i want to live my life so much but it feels impossible. doctors cant help me. no one can. my brain is fucked. i used to be so full of life and now im nothing. this is hell.

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@[am...], you sound so miserable, and I can understand why you feel so hopeless.  How has your recovery been before this latest onset of extreme symptoms, it sounds like this has happened before since you mentioned it’s getting worse again. 

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@[am...] So sorry that you are going through this. People heal but many of us need to be very careful for a prolonged period of time. Did you take any new drugs or supplements, change doses, or drug manufacturers? If so, what are the changes specifically? These changes can complicate and exacerbate existing issues for someone with a benzo injury. And yes, at 13 months this can happen, and from what I have seen it is typically attributed to other substances that far out -- CBD, alcohol, magnesium, or other vitamins, an antihistamine, etc. etc. It depends on the person. I see you used the word "psychogenic" -- who told you that you are psychogenic? Doctors like to use this term to gaslight patients who are having legitimate physical issues or side effects that these doctors do not recognize. Especially when it comes to prolonged benzo withdrawal. They love to say we have conversion disorder or functional neurological disorder too. If you are coming from a psych ward, that is their lens.

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5 hours ago, [[R...] said:

@[am...] So sorry that you are going through this. People heal but many of us need to be very careful for a prolonged period of time. Did you take any new drugs or supplements, change doses, or drug manufacturers? If so, what are the changes specifically? These changes can complicate and exacerbate existing issues for someone with a benzo injury. And yes, at 13 months this can happen, and from what I have seen it is typically attributed to other substances that far out -- CBD, alcohol, magnesium, or other vitamins, an antihistamine, etc. etc. It depends on the person. I see you used the word "psychogenic" -- who told you that you are psychogenic? Doctors like to use this term to gaslight patients who are having legitimate physical issues or side effects that these doctors do not recognize. Especially when it comes to prolonged benzo withdrawal. They love to say we have conversion disorder or functional neurological disorder too. If you are coming from a psych ward, that is their lens.

actually yes - i took panadol and there was a period where i stopped my antidepressant (mirtazapine 7.5mg) (which i’ve been on for 4 years even before benzos) but had to reinstate bc the symptoms got bad and improved slightly when i went back on. it seems everytime i take panadol i get shock pains or worse symptoms the following days. i’m not sure why. is this possible? i don’t doubt my antidepressant shift might’ve shaken my system but it seems the pandol also has played a part as i’ve taken it in the last and noticed a pattern of worsening physical and mental symptoms the following days.

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7 hours ago, [[s...] said:

@[am...] so sorry.  please don't give up your are already 13 months off. They say it gets better and you heal. 

i’m trying, thankyou for the encouragement 🫶🏽

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9 hours ago, [[P...] said:

@[am...], you sound so miserable, and I can understand why you feel so hopeless.  How has your recovery been before this latest onset of extreme symptoms, it sounds like this has happened before since you mentioned it’s getting worse again. 

i had a great window from january to april this year where i still had symptoms but definitely much less. then in may and june i experienced more mental symptoms but was still functioning and able to go to places ect. in july i seemed to crash. i was very stressed at work and i didn’t really have any support system in place. could this have triggered a wave? i also was taking paracetamol for headaches quite regularly and I had alcohol once (it was mulled wine at a festival, just one drink). when i first hit the wave i attributed it to my antidepressant, mirtazapine 7.5. which i’ve been on for four years (2 years before i even started benzos) i don’t know why, but it just seemed like i was worse when i took it. so i tried tapering myself off but that’s when i became numb. i have since reinstated it but i’m still numb. and i’m scared.

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10 minutes ago, [[a...] said:

i had a great window from january to april this year where i still had symptoms but definitely much less. then in may and june i experienced more mental symptoms but was still functioning and able to go to places ect. in july i seemed to crash. i was very stressed at work and i didn’t really have any support system in place. could this have triggered a wave? i also was taking paracetamol for headaches quite regularly and I had alcohol once (it was mulled wine at a festival, just one drink). when i first hit the wave i attributed it to my antidepressant, mirtazapine 7.5. which i’ve been on for four years (2 years before i even started benzos) i don’t know why, but it just seemed like i was worse when i took it. so i tried tapering myself off but that’s when i became numb. i have since reinstated it but i’m still numb. and i’m scared.

I consider stress to be the greatest contributor to increased symptom severity, it doesn’t seem like the paracetamol or mulled wine would be a problem.  Have you tried going without the paracetamol to test your theory or are your headaches too painful?

I’m kind of doubting the Mirtazapine too since you’d been on it so long.  The trouble is, by attempting to taper it, you may have caused upset so you could still be dealing with that.  Hopefully your nervous system will settle from that.

How is your stress level now, have things at work been resolved? 

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

I consider stress to be the greatest contributor to increased symptom severity, it doesn’t seem like the paracetamol or mulled wine would be a problem.  Have you tried going without the paracetamol to test your theory or are your headaches too painful?

I’m kind of doubting the Mirtazapine too since you’d been on it so long.  The trouble is, by attempting to taper it, you may have caused upset so you could still be dealing with that.  Hopefully your nervous system will settle from that.

How is your stress level now, have things at work been resolved? 

yes i think it mightve been the stress but i went on holiday shortly after "to relax" and i just didnt ever return back to normal. i think you might be right about the mirtazapine making the wave worse and further upsetting the nervous system though. its so frustrating knowing ive probably exacerbated my own symptoms by trying to fix them. 

my stress level is complex right now. i cant seem to feel anything (numb) but if i could id be stressed i guess. i dont get the gut feelign or release of emotions or anxiety anymore. i just feel like a zombie. like im nothing at all. its a really horrible feeling. id much rather be clawing at the wall stressed out of mind because atleast id be reacting normally. i cant react to anything. i think the worst thing in the world could happen and i wouldnt feel a thing. i dont know if this is normal and im freaked out. ive always been extremely emotional. i dont know if this is a symptom or a trauma response from how bad the beginning of this wave was (had a full mental breakdown, shaking, crying, throwing up) i havent felt anything since then. that was over a month ago.

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i'm 14 months off (July 17 2022), and am currently in a wave of symptoms. My waves are predictable and triggered by specific stressors in my life. I had a PTSD experience with travel and now every time I try to go away the day before I leave I fall quickly into a wave. I agree with Pamster, stress is the biggest contributor to a wave.  

My last wave was in May and lasted 4 weeks. I'm now on day 4 of this September wave. It's very frustrating and cruel how the healing works. And how much we need to be mindful of during the sensitivity phase. And not knowing how long the sensitivity phase will last (as it differs per person), contributes to the frustration and cruel nature of it all. 

Keep going, you got this. 

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31 minutes ago, [[a...] said:

yes i think it mightve been the stress but i went on holiday shortly after "to relax" and i just didnt ever return back to normal. i think you might be right about the mirtazapine making the wave worse and further upsetting the nervous system though. its so frustrating knowing ive probably exacerbated my own symptoms by trying to fix them. 

my stress level is complex right now. i cant seem to feel anything (numb) but if i could id be stressed i guess. i dont get the gut feelign or release of emotions or anxiety anymore. i just feel like a zombie. like im nothing at all. its a really horrible feeling. id much rather be clawing at the wall stressed out of mind because atleast id be reacting normally. i cant react to anything. i think the worst thing in the world could happen and i wouldnt feel a thing. i dont know if this is normal and im freaked out. ive always been extremely emotional. i dont know if this is a symptom or a trauma response from how bad the beginning of this wave was (had a full mental breakdown, shaking, crying, throwing up) i havent felt anything since then. that was over a month ago.

can very much relate to the numb feeling. My last wave in May started with panic attacks that lasted a couple days. And then I went into a period of just feeling so numb. That nothing felt like anything. It's very hard to describe. It's not a good numb. It's a numb where you are so desperately craving to feel something.  In hindsight, it was my system just trying so hard to find equilibrium again. Yours is too.  Stay away from alcohol (IMO) and try and stay away from stress (although life also just happens). Also tapering from mirtazapine will most likely cause disruption to your CNS equilibrium. Are you wanting to get off Mirtazapine? 

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