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It's been a long road and I am still on it, lost and needing directions.


[Pa...]

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Im sure this is going to get lengthy, I also dont really know why I am writing it,  I know that nobody has an answer since this is such a different process for everyone,  but I guess I'm just looking for advice.

It's been a long road and I am still on it.

So my history is this.

In 1995 I got  some strange illness that would much later be identified as Lyme disease, during that time I was treated with various Benzodiazepines, and became dependant on Benzos, I didn't know what was going on at the time, doctors has no clue, mri, eeg, trips to the neurologist and a 3 day stay in the psychiatric ward, I went through hell for a while with benzo switching, multiple cold turkey and add on medications. Eventually the Lyme disease was addressed and treated, and I recovered from it however in the process I ended up on ana ridiculously high dose of Lorazapam. 18 milligrams per day was where I was stable and yes this was all done under the care of a doctor.  When I found out about benzos I started to taper.  Which was surprisingly easy , I got down to 3mg per day pretty fast ( under a year ) and from there it took me about as long to go from 3 to 0 as it did to get from 18 to 3.  I didn't have any severe withdrawal or paws , I mean looking back,  i had some sleep issues for a while, but not to severe. During this entire process I never fully understood what benzos where or what they were doing to me.   So when I quit benzos I still didn't understand they were the real problem, it was explained to me that the Benzos were treating the symptoms of LYME while the antibiotics did their job, and then I would taper off the benzos. This is what I was told, this is what I believed.  I put it all behind me and moved on with my life.

Fast forward October 2017.  Stressful move, new job,  wife wants a divorce and dad gets a late diagnosis on cancer that would turn fatal quickly.  

So I took 0.5 mg doctor prescribed Klonopin for 14 days.  Then quit. Things were bad for like 2 weeks and I was okay.  Again I didn't attribute this to withdrawal,  but to my situation.  Still ignorantly thinking I could use benzos when needed, in December 2017 I took then again, and wham that's when it happened.

I went into full tolerance and interdose withdrawal symptoms immediately.  

Doctor switched me to 8mg diazepam no cross over, and I was fine.  I got all the way down to 4 mg and was starting to struggle.  My doctor in an effort to help me get off told be gabapentin was safe and effective and not addictive.

You would think by this point I would have done some research and learned my lesson, but I didn't.

The gabapentin worked, but 1 week after CT from 4mg Valium the gabapentin was no longer covering the withdrawal,  and now I was dependent on gabapentin.

So you can see the pattern of complete and total ignorance on my part , and I take full responsibility for that.  

I decided I needed to be off the gabapentin,  which ended up in a reinstatement and increase  of diazepam.  Then the doctor switched me to Librium.  100mg per day.

I tapered down to 23mg per day by making a liquid solution and removing 1mg every 10 days.  It was not comfortable, but at 23mg things got bad, I made it to this dose about a year ago.  I tried to ride it out, but days turned into weeks, and I just couldn't take it anymore.  I became suicidal and was experiencing such physchological and physical discomfort coupled with severe insomnia I just broke.  So I updosed 1 day at 40mg just to get some relief, and told myself I would just take benzos for the rest of my life,  or really slow down my taper. Well I didn't really get any relief,  but for lack of a better term, that 40mg Dose Stuck.  So i had to taper even more slowly. fast forward to my 30 MG reduction and the same thing happen.

 
Now at this point I finally started to get educated on Benzo WD, Multiple WD, Kindling, and all that fun stuff.  
 
So ill cut out all the extra stuff, but I went between 30 back to 40 several times and now here I am 5 and a half years later and still taking 40mg of Librium, and I don't have good days.  I have horrible days, bad days, and tolerable days.  I am going to continue to taper because I know that this is probably not going to get better while I am on the medicine,  i've gone past the point of stable.  The medicine is causing further damage, and the withdrawal is a nightmare
 
My Doctor would be willing to put me on Diazapam,  and I have thought about it for months now.  Here is my concern, given my current state I am not sure having a slightly longer half life and a little bit more potency would help me at all.  Ashton says Librium is 25:10 ration to valium.  but every other source I look at says its not,  most conversions put 40 MG of Librium somewhere between 8 and 14 mg of Diazapam, and that is a huge difference.
 
I have learned how to live life being miserable,  I exercise, I work in the yard, I even painted my entire house on my own, I have learned how to live this way because after this many years ,  you just kind of adapt.  However there is 1 symptom that I can just deal with, 1 symptom that was the reason for all the times I updosed, and that is nocturnal panic attacks.  
 
I am right on the edge of sleep, and Wham heart racing, sweating, confusion.  it takes a while to calm down, then I can usually sleep a while and it happens again. These nights usually end in sleeping 4 hours and waking in terror.  The thing is, when my eyes are open, the panic is gone.  If i try to nap during the day its the same thing.  
 
This is the Symptom that breaks me everytime, and it seems to be at a very specific dosage and I have learned that everytime I updose, then try and taper this symptoms appears quicker each time.  So updosing is not an option anymore,  my most recent up dose was to 48 milligrams and that was about 3 months ago, and  I am now back at 40mg, which was fine for the first 3 days.  Then last night I started getting those Panic Attacks when falling asleep, which was a symptom that showed up during my first taper, and I was all the way down to 23mg.  holding does not improve symptoms at all and I made it back down to 40mg per day.  I have to take the entire dose at night,  if I split the dose all hell breaks loose.
 
I eat very healthy, exercise,  and push my way through each day.  I've been "Faking it until I make it" for 5 years now, it would be one thing if I was clean from the meds,  but I still have 40 Milligrams to go.  I guess I am just wondering what people think about Diazapam possibly making this easier,  but the last thing I want to do is get on a drug that is harder to get off,  or to get on a dose that is to high or to low.
 
I mean, anything anyone wants to say... I appreciate it.

 

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I don’t understand everything but I have been on klonopin since 2008 and I feel the same that I will be in the meds the rest if my life. Everything that could happen to a person happened to me. I have to work my husband of 38 years left me. I want to taper but no one to help. I am on 2 mg at night. Suffering headaches vision issue. I can’t taper with liquid or scale I travel for work new job. I need help 

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I'm really sorry for what you have been through and are still going through Patagonia23. None of this is your fault. You did everything that the expert(s) guided you into innocently doing....and that is taking a pharmaceutical drug as prescribed.

I was initially on Ativan and then chose to switch over to Valium in order to taper from it. The only symptom I recall popping up early on and then lasting throughout my Valium taper, was a deep, dark, toxic depression. This toxic depression hit me daily, like clockwork, each morning upon awakening. It only let up, when I would get up for the day.

I'll never forget that horrible feeling of depression...it was like a black hole that I couldn't escape from...and there was a physical component to it....it didn't just affect me psychologically. Fortunately, this symptom did leave, either soon after or right at the point when my taper from Valium ended. It was a six month taper from Valium 5 mgs.  

I also had to deal with toxic sleep issues. I still struggle with insomnia. But the toxic fear/eyes not wanting to shut/being jerked out of sleep, etc., are gone and have been for years. Once in a blue moon, I'll have a bizarre nightmare.

I realized if I wanted off the drugs(Ativan and Ambien), I needed to follow closely a taper plan and NEVER look back. Everyone is different....so it's best you decide what's best for you. I hope for the best for you and anyone trying to get off these drugs.

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You are one brave soul! You can't blame yourself for all of this; doctors are there to help. They're just not trained in benzo use. They know when benzodiazepines can help; they just don't know the full range of damage that can follow. We're all swimming in strange waters. This is most certainly not your fault. Above all.

There are people here who have seen a myriad of situations and will have seen some that are similar to yours. Just to clarify: you are currently on 40 mg of Librium, and nothing else?

The nocturnal panic attacks are awful. I have a grandson who has these, but he has a neurological disorder from a genetic mutation. My daughter works hard to help him NOT have these. For a while I know she was using CBD oil. It was a special blend that had a lot of Indica, because Sativa strains are bad bad bad for sleep for most people. On the west coast, they've identified sativa as the primary reason for a surprising uptick of panic attacks. 

Many would say to hold until you stabilize. Two weeks, a month, two months, whatever your body needs. You've clearly been amazing at making things work when they really shouldn't. Yet here you are, doing all you do. I'm really amazed. I know you'll find a way through this and hopefully a lot of wiser people will hop on and chime in! :hug:

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@[Pa...] Hi friend. I want to start by saying, thank you so much for sharing your story. I read every word. You have so much courage. I understand what it's like to 'look back' and feel that we have been 'ignorant', and yet, we never think that a medication prescribed by a trusted physician, will change our lives forever. You have been through SO much. How is your Lyme's disease today? 

So, I'm not well versed in Librium, so I cannot speak to this, however I'm sure there are others on the forum who have some experience - I hope they reply and share their experience with you relative to Diazepam. I did recently taper off Diazepam over a 10 month period and felt (comparatively to other WDs from other drugs), Diazepam was the most tolerable. That said, in reading your history, I understand your situation is unique with the kindling, tolerance etc. 

I'm wondering IF you were to try transitioning to Diazepam, and IF it didn't work, is your physician amicable to switching you back? I'm interested in hearing what other members have to say. 

Lastly... I too, experience the middle of the night panic attacks. They are AWFUL. I experienced these mostly during opioid cessation/tapers. I wake up, heart racing, GASPING for air, no clue where I am. When I find the lights, I return to homeostasis, but those first few seconds are terrifying. Thank you for sharing your story. Know that this community is here to support you along your journey.

 

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@[Pa...]

How about some calming AD before sleep? I take ADs before sleep and have no panick attacks. I currently take them with a small amount of diazepam. But there were times I didn't. And I sometimes sleep,on ADs alone.

But diazepam on it's own would not have calmed me. I think you are in tolerance with the librium. There are several neuropathways involved in it. I'm wondering if you're not a bit obsessive about sleep. 

Sleep is a very wicked creature. It will never come when you want it to. I see you're doing your best to be functional, despite the BZD. And the sleep issue messes it all up...

I detect an element of compulsivity in it. There are really good sleep aids that won't make you hooked like Gabapentin did. I'm thinking maybe tricyclic ADs or ADs with antihistamine component. I think you could talk to your doctor. Ashton isn't against adjacent meds. In fact, taking BZD alone could be more dangerous in certain cases. 

Take care:hug:

Paula

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  • 2 weeks later...

@[ia...] my doctor would definitely be willing to do a diazapam switch and also be willing to switch me back.  He is benzo ignorant when it comes to damage and dependence,  but he has no problem working with me or letting me try new things.  Infact I just made a post asking about a Librium to Valium cross over.  It's something in really considering.

 

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