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27months and still some challenges, just need to know if it will go away fully!


[Bi...]

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27months since off K, after 8months taper. Protracted withdrawal thanks to alcohol at the beginning before I understood and epilepsy meds, as it triggered daily seizures to start (possibly thanks to the anxiety levels) but we are seeing a lot of positive improvements. Seizures went from daily to seizure free days close to half the month now, insomnia from 1hr a night to 4-5hrs and then some up to 7hrs, though waking up regularly. DP/DR stopped this time last year. Short term memory is creeping back but still lost lots of my long term and so scared I'll never get it back...

This really hurt my anxiety so I'm doing what I can - exercise, more wholesome diet and just started CBT therapy.

Will I ever escape it fully? Especially things like regaining memory, as it is really impacting my career and I want control over my seizures 

 

 

 

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

27months since off K, after 8months taper. Protracted withdrawal thanks to alcohol at the beginning before I understood and epilepsy meds, as it triggered daily seizures to start (possibly thanks to the anxiety levels) but we are seeing a lot of positive improvements. Seizures went from daily to seizure free days close to half the month now, insomnia from 1hr a night to 4-5hrs and then some up to 7hrs, though waking up regularly. DP/DR stopped this time last year. Short term memory is creeping back but still lost lots of my long term and so scared I'll never get it back...

This really hurt my anxiety so I'm doing what I can - exercise, more wholesome diet and just started CBT therapy.

Will I ever escape it fully? Especially things like regaining memory, as it is really impacting my career and I want control over my seizures 

did u have grand mall seizures or partial/focal seizures? if it is partial or focal, how did you know that they were actually seizures? i feel like i have electricity in my head and it really freaks me out. are they seizures?

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I do have a mix of both - as I was on the benzo for epilepsy in the first place - just went from seizures every few months (even before meds) to daily thanks to withdrawal. But when they are focal seizures I have focal aware - which I feel really weird, where I have strange impact on my thoughts for 30secs or so, but don't lose awareness or have outward presentation. Mostly I have focal impaired - where I sometimes have the weird thought leading into it, lose awareness then I'll have outward symptoms that others will notice (especially if they know me). If I'm alone I can't always tell, but mostly they're spotted.

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6 hours ago, [[B...] said:

27months since off K, after 8months taper. Protracted withdrawal thanks to alcohol at the beginning before I understood and epilepsy meds, as it triggered daily seizures to start (possibly thanks to the anxiety levels) but we are seeing a lot of positive improvements. Seizures went from daily to seizure free days close to half the month now, insomnia from 1hr a night to 4-5hrs and then some up to 7hrs, though waking up regularly. DP/DR stopped this time last year. Short term memory is creeping back but still lost lots of my long term and so scared I'll never get it back...

This really hurt my anxiety so I'm doing what I can - exercise, more wholesome diet and just started CBT therapy.

Will I ever escape it fully? Especially things like regaining memory, as it is really impacting my career and I want control over my seizures 

@[Bi...]Chiming in to give you an inkling of hope here. When I first came off benzos, I could barely navigate a website to order groceries. Now, I'm able to write sales presentations. I had memory issues too, and now my memory is better than ever. It came back suddenly too -- I remember the day! All of a sudden I recalled Joe Perry's name from Aerosmith and I am not even really a fan. LOL.

I'm glad to hear you're seeing improvements, although I hate that you had to go through all of this. I'm keeping the faith for you. My hunch is that this will go. You are right in that sweet spot of 24-36 months. I am creeping up on you in terms of time off but had a complication of another drug. I have a host of symptoms I am hoping will go myself.

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

@[Bi...]Chiming in to give you an inkling of hope here. When I first came off benzos, I could barely navigate a website to order groceries. Now, I'm able to write sales presentations. I had memory issues too, and now my memory is better than ever. It came back suddenly too -- I remember the day! All of a sudden I recalled Joe Perry's name from Aerosmith and I am not even really a fan. LOL.

I'm glad to hear you're seeing improvements, although I hate that you had to go through all of this. I'm keeping the faith for you. My hunch is that this will go. You are right in that sweet spot of 24-36 months. I am creeping up on you in terms of time off but had a complication of another drug. I have a host of symptoms I am hoping will go myself.

So are you fully recovered? How long did it take you to recover? Did everything else come back along with your memory?

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Word on the benzo community street is that you will heal. Your brain just needs more time. Everyone gets to a point in this journey that they question their healing…sometimes more than once especially as the months continue to roll by. If you read the success stories you’ll see almost all of them say they thought they wouldn’t heal too but was proved wrong. I’m 5 days from being 4 years off Ambien and I’m looking forward to my complete healing and put it past me. You hang on to your hope of healing with a tight grip…why? Because it’s not a fantasy. 

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Thank you both so so much! It means a lot to read those and have the reassurance! As it is not having the people who understand it in your support network that can often get you in your head or feeling down so much more! But that makes a lot of sense that I will hopefully get there soon! 

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It will pass. At the beginning of my withdrawal after CT I also had seizures - two. I even couldn’t remember how to cook chicken with rice and vegetables. After 2 years I was able to work again (I am legal adviser so my memory and brain are so important). I was able to work even though I had a setback because of dental work through this time. It will improve nevertheless how desperate it looks sometimes.

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2 minutes ago, [[H...] said:

It will pass. At the beginning of my withdrawal after CT I also had seizures - two. I even couldn’t remember how to cook chicken with rice and vegetables. After 2 years I was able to work again (I am legal adviser so my memory and brain are so important). I was able to work even though I had a setback because of dental work through this time. It will improve nevertheless how desperate it looks sometimes.

I keep putting off the dentist because it worries me.

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Yes that's fair. I'm on the waiting list for surgery too, which will probably time for when I'll end up with a setback. Ah thank you. I think I've not fully understood stuff about diet too, does anyone have any tips on diet at 27 months? 

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Oh, I just don’t want to think about the dentist. I’m still with opened tooth because of my reaction to the filling. I hope that I will able to make it this week. But I am some extreme case with my dental adventures. Most people are ok with dental work.

My diet now is very limited. I am eating chicken breasts, eggs, vegetables and fruits. I can’t live without bread so I’m eating it. Last week I found that I reacted to a marine salt. It’s the strangest thing for the last 4 years.

Before my current setback my diet was horrible. I was eating one chocolate per day. So I guess that at least this setback will remove my benzo belly. Or I hope so.

 

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Ah thank you, that makes sense. Thank you! I think I will need to cut back on a few things in my diet - just got so confused as we are all different in how our body responds, so I ended up doing so many things that I'd seen different people found helped. From here or from blogs or where ever else.

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On 15/06/2024 at 10:53, [[O...] said:

So are you fully recovered? How long did it take you to recover? Did everything else come back along with your memory?

@[Bi...]No, I am not fully recovered but I can use my brain now. I still have other symptoms indicative of nervous system and hormone issues. I just wrote a sales presentation this morning and I am on the phone pitching myself for work all over the place. Nobody knows I am suffering. I suffer quietly now. I have not told anyone new I have met about the drug harm. I do not look like anything is wrong from the outside.

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Thank you both and that makes sense.

I do need to remind myself it is a long process and I am seeing improvement, so when it's tough or symptoms are flaring up then I just need to accept it and power through, then focus on what I'm doing and how will make me feel better in how I'm doing it and things going forward.  

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

Biddy and everyone,  please go read the letter I posted. I think it will help. 😊

I just read your letter and it is great - really great to read and a great reminder that the healing process is there to heal us, despite all the challenges! 

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