To reinstate or not

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

Agua, I'm experiencing something very similar to you right now. I triggered a severe setback or kindling effect by drinking alcohol and caffeine. I have been in hell since the end of January, nearly 6 months. Some days I have really struggled to survive. My symptoms have been extreme. I have been tormented and tortured by extreme feelings of terror and fear and doom and have such bad akathisia that I have been pacing up to 18 hours a day. These are not my only symptoms.

I have seen very little improvement in all that time. But, I absolutely will not, now or ever, take another benzo. I only wish I'd known about the dangers of drinking alcohol post benzo as I would have said the same about alcohol. No benzo or any other psyche med or alcohol or any other substance will enter my body as long as I live unless it is a life saving treatment. And, even then I will extensively research what the Doctors want to give me.

When I came off Valium over 10 year ago, which incidentally was after kindling and a CT of Lorazepam, I recovered. It took a long time, but it happened. I was living a decent life. And, the way I did it was by NOT taking any other benzo or psyche med or any other mind altering substance and allowing my brain to heal. I had desperate times when I really considered taking something.

I have had desperate times recently also. But, deep down I just know that reinstating would cause more trouble. Believe me when I tell you that I have really struggled to survive this last 6 months, it has been torture and painful beyond what words can describe. And, it is still ongoing. But, I know that the only way to heal is to push on through.

Please try to be strong. It takes an inordinate amount of strength, I know, but please try! In time I am absolutely sure that, like me, you will look back and be glad that you didn't reinstate.

Thanks so much for taking the time to write this message 

I still cant accept the fact that i didnt know how taking benzos after being off benzos could be so dangerous. Been on the benzo groups for so long and cant forgive i didnt pay enough attention to kindling 

I really cant make myself to reinstate, sometimes i wish i just do it, but the fear of even worse is huge. What i really want is to turn back time or at least get a definitive answer "yes, you should have reinstated when this started while the issues were still minimal" or " no, reinstating would make it worse". Not knowing is the worst 

I admire your strenght and from watching it i can see you're going to get out of there intact 

 

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2 hours ago, [[M...] said:

Agua, a bit different although similar. After tapering for 1 year and being free of benzo for 4 years (having good time), during covid, while could not sleep she took some....when she stopped symptoms came, then trying benzo again and stopping...symptoms again...(not knowing how dangerous it could be) finally went to doctor and, not understanding why, but believed doctor to switch to diazepam and in 6 weeks get off benzo. Never stabilzed, with permanent symptoms, but believed doctor this will cease shortly...it was 13 months ago. In the meantime we found BB and scary stories of people after CT or fast tapering suffering for years. Actually symptoms gradually are getting ....worse, no any windows. Thinking of reinstating but to scary to be in even worse situation....

Its the kindling effect what's happening the to us. Never take benzos again once off benzos and we didnt know it. What a shame. Each time your wife started and stoped the worse it got, just like me with the single doses. And the way of getting off is crucial 

I hope she starts to see improvements. Dont take any med as everything has the potencial for worsening when the nervous system is so damaged

 

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

The other thing I forgot to mention is that about three months after reinstating, the Klonopin just stopped working for the most part and I even started getting paradoxical reactions with some doses.  
 

I know this is incredibly hard and you feel you’re at a crossroads for your life.  I was there.  If I had to do things differently, I would have just gone on disability and accepted that I was going to be screwed for a while.  Stop putting pressure on myself and adjust my life accordingly.  I ended up doing that anyway, but felt much, much worse while doing so. 

How are you doing now? Any improvements since coming off of the benzo?

[[Av...]]

[[dj...]]

[[Mi...]]

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@[Mi...], obsessing, rumminating  feeling guilty is a symptom too at least for me. This has chemically changed my mind giving me OCD traíts and other feelings i cant control because my mind is not mine anymore 

I"m living with my mother and she is hopefull as well despite seeing no improvements. She is old and this already aged her so much destroying her health mental and physical health which just makes me feel even worse for not being able to help her, watching the on going destruction and unable to do a thing, so unecessarly. If she passes and i'm still like this i have no way to go on

I cant take any med or supplements since this. Even a painkiller pill gave me weird stuff. One single magnesium capsule also shocked me more as it touches Gaba receptors like benzos. It depends on how sensitive your system is. I dont think i"ll ever be able to take meds again or have surgery as everything can set me back big time. Its terryfing and never thought it would be possible. It actually isnt for the ones that arent in this 

Benzos are indeed the most dangerous drug of them all, the only one that downregulate receptors this way and the most important one that regulates everything in the brain and body 

[[Mi...]]

Agua, I'm really very sorry for your suffering, I understand your situation, your mother ....yes all is so complicated, difficult, painfull...

Do hope something will change for better.

[[Av...]]

[[Cr...]]

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@[Av...] what its usually seen on setbacks is people having the same symptoms they had in their withdrawl, usually more intense. What concerns me more is that i never had these issues before and more issues came with time. Lets see what happens, we cant do anything anyway 

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@[Cr...] cant remember well, it was very confortable and i thought it would be awful, postponed it for years. The interdose withdrawl anxiety while on the full dose reduced the more i cut, the only symptom i had was irritability. Once off i had the usual agaoraphobia, dizziness and fear upon waking up, it went away few weeks later and i was coming to life like i never felt on the latest years on the drug. Back pain gone, anger gone, better sleep, poo, skin, libido, creativity was returning, physical energy, awareness and empathy, depression lifted and i couldnt even see how bad i was while on the benzo 

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@[Av...], can i ask if withdrawl started for you hours after the alcohol/caffeine consumption? Days later?

[[Av...]]

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@[Av...], i hope he/she can help you in any way, keep us posted please 

[[Cr...]]

What are your symptoms? 

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@[Cr...], non stop tinnitus, floaty boaty dizziness, paralized feeling behind the eyes like having lobomy or been hit in the head several times. No connection to a self and life which unables me to be in contact with things that were part of my life like music or friends. If i happen to watch a photo of some interest of mine its a big shock with a feeling of trauma and loss, cant look at it as its all from another world that i dont belong to, but ts different front DPDR.

Muscle stiffness and weakness in the neck and trapezius that led to an injury that unables to move head but cant take any meds or do anything, very swallen and painfuil, back bones and muscles sticking out, hunchback, neck forward can barely hold head. Legs walk like they're marching thrown forward in the air very rigidly and slowly, left knee dont bend when walking, feet touch the ground very weirdly. Body feels pulled by gravity, feet are smashed to the ground when standing, feet feels like having no fat pad, have to imediately sit but have to imediately stand due to an uneasiness different from akathisia as this cant even handle movement. Its like being in a constant urge to pee and evacuate at the same time, so doing something like opening the fridge and take something out is like throwing myself to lions because the nervous system cant handle anything, so i have to stay like a statue all day avoiding to do anything but not even staying there is possible.

Cant be in bed if not sleeping which is only a few hours. If i force myself to be there my it all attacks me more violentely, physically and mentally, have to get up imediately despite wanting to rest. Cant barely keep my eyes open and i feel this is linked to that paralyzed feeling behind the eyes. When the eyes close i imediately fall asleep 

If i cry or talk it all gets worse, like an overstimulation 

Face rapidly changed in a disturbing way, lips much thinner, smaller chin, mouth looks like having no teeth when closed, something is missing inside the mouth, it doesent hold food properly and is smaller making a hollow sound when chewing. Looks like rápid aging 

 

[[vo...]]

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@[vo...]i didnt say it was akathisia, maybe your're mistaking with Avalon3000

[[Cr...]]

Do you think that a massage could help with some of your symptoms? 

[[vo...]]

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

Do you think that a massage could help with some of your symptoms? 

It makes it worse as it stimulates. Months ago when things werent this bad and i could still get of the house i went to an osteopath and it made it all much worse, i think i"m still dealing with the effects that session had in the whole nervous system. Even if i could "physically" get a massage, "mentally" i couldnt as it would be a huge shock because i dont belong to life. Even the act of eating causes big distress despite having a big apetite, so i have to avoid it 

I cant even lay or sit without much distress, existing in any way is torture, let alone be touched or touche myself 

Edited July 24 by [...]

[[Cr...]]

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I have no conditions to go on and cant reinstate either. Not even saving my life i can 

[[Es...]]

On 23/07/2024 at 19:44, [[M...] said:

Yes it might be the cause of such a severe symptoms. But anyway I'm trying to stop my wife of permanent blaming herself that she did it - it does not help. People make mistakes with or without knowledge and can't undo it. So please you all stop blaming yourselves and try to believe that it will improve, I think that such feeling of gulit does not help with anything...I know it is hard to stop...but please try, you are not the only one

Regarding meds she takes propranolol in very small doses ( 2 x 10 mg) - since last summer. Does it help anything? Do not know. Actually, if I were my wife, I would probably try to increase these doses, because there is a chance that higher doses might help to reduce acathisia, internal trembling, burning skin...and maybe some others. Recently I watched Melissa Boutilier on youtube and her experience with propranolol and it helped her but higher doses (90). All other meds my wife does not take, she tried few but all has only worsened her symptoms. Hard to take more  as she has akathisia, very severe pains, the worst in chest, belly, head, terrible insomnia (sleeping only a minutes and waking up with terror, and few times like this at each night, since april 2023), can't watch tv, read, talk to friends, family...and the mornings (from 6 a.m. till afternoon) total suffering with hard breathing, pain , akathisia (exhausted but has to walk otherwise feeling like might explode)....really pure hell...

Never ever  thought that meds can be such a dangerous devil...OMG.

Please do try to think not about damage done to you, but that it might and has to improve. 

I believe it.

@[Mi...]

Propanolol is helpful for anxiety. I take one 5 mg dose for sleep and one 5 mg dose for when my symptoms flare up. It's a strong med. I split the pill in half. The worst for me are hot flashes. I think small doses of propanolol could help akathisia. However, propanolol is not a psych med. She could react well to an antihistamine maybe. I'm in favor of a benzo RI, but it's up to her doctor. The amount of suffering Ala is going through breaks my heart.