Been Brainstorming, Experts Help Me Figure This Out

I apologize for the length of this, but feel the information and history are crucial.

 

4 years ago, I went through Opiate W/D after a great doctor fixed my chronic pain issue. I had random panic attacks after stopping my last, tiny, dose. During that year, I was prescribed Ativan as neeeded, only 3 30 pill bottles, I never even finished the last bottle because I recovered after that year. I so rarely used them, that I never had a problem just stopping them, because I never developed a dependency on them.

 

It was during that year I was diagnosed with Hypomagnesemia due to long term use of a Prton Pump Inhibitor I never needed. It was prescribed to protect me from NSAID use-related ulcers. I had previously tried stopping the PPI without success as I would get Rebound Acid Hypersecretion (RAHS). After 4 years of many Magnesium Infusions, I was able to stop the PPI thanks to the kind folks (Especially DR Boyce) at Trio Medicines in the UK, who donated Netazepide to me. I live in the US so it took 8 months to get it, FDA gave their approval because I met their criteria and found a wonderful GI doc to assist me in getting it. Whenever my Magnesium was too low, I would have anxiety, get infusion, anxiety would go away

 

Two + years ago, my mother passed away at age 91, the day after Thanksgiving,  after a failed heart procedure. The Hypomagnesemia got worse, plus I was grieving terribly. I lost my appetite, lived on oatmeal 3 x's a day for a month, then right after Chrtstmas I could no longer eat and sought emergency psychiatric care. I was hospitalized, offered Ativan as needed (I think I took only two the time I was there because they monitored my Magnesium and I was given two infusions. My Autism was causing me issues as well, I started stimming again, something I did as a child (I have Aspergers). I was discharged with Risperdal very low dose (I had the 1 mg and .5, I mostly used the ,5) and Ativan as needed.

 

I used up the 30 pillls of Ativan post discharge, while waiting 2 months to get into aftercare and had what I thought was a virus, felt like the flu, bedbound for two weeks with chills and shaking, after the two weeks I felt fine. But I now wonder if I was actually suffering from the Ativan, as I was using it two or 3 times a week.  Did I have very mild W/D's

 

 

Once I saw Psych doc in aftercare, she completely ignored what hospital did and put me on Klonopin, said I had Generalized Anxiety Disorder. She wanted to do 1.5 mg a day, I only agreed to 1, .5 am, .5 afternoon. She prescribed Ambien (Zolpidem) for sleep. I have been on Ambien before, for ocassional sleep issues due to chronic pain, but rarely used it. A bottle of 30 pills would last 6 months, and after my Opiate W/D, I had stopped using Ambien too. The Klonopin did nothing when my Magnesium levels got low, and I'd end up in the ER. My anxiety would go away and I'd take only .25 Klonopin twice a day, cutting my dose in half, which the doctor thought was great.  I was yoyoing my doses, and unknown to me, was having mild W/D which I then thought was a sign my Magnesium was starting to drop. Mangesium would get too low, I'd up the Klonopin to .5 again, and I'd be back in the hospital for another infusion. Wash. Rinse. Repeat.

 

After I got the Netazepide from the UK, I asked my Psych provoder about stopping the Klonopin, as I truly believed my anxiety was all Hypomagnesemia related. I was told to stop my afternoon dose, then my morning two weeks later. Within less than a week, I had W/D and reinstated. All physical, no anxiety, no psychiatrric) Switched Psych provider who agreed with the Ashton Protocol and switched to Valium, which I did easily as at that point I had been taking only .25 mg Klonopin twice a day, and apparently unknown to me, went through W/D's that I though were due to the worsening of the Hypomagnesemia. We switched to 10 mg bedtime, 2 mg am and I tapered 1 mg every 5 days and fely pretty good through the whole time. I had zero anxiety and minor annoyances that I easily coped with. But 10 days later I felt horribly sick (again all physical, no anxiety), found a doctor's blog castigating fellow doctors about the over use of Benzos, and he himself had been a victim of them. He had mentioned Benzo Buddies in his blog post to hi followers, and said they helped him through his taper

 

So I found my self here, and was advised by several to reinstate because I was in that window where I could do it, since I still had Valium in my system. Even Dr Ashton says in her manual that those who do a rapid taper the 1st time, can redo it proprly the 2nd time, and do very well. Two full months (and a few days) after reinstating, my Provider and I agreed to try a tiny cut, instead of Ashton's recommended 1 mg, we went with .5. W/D began within a day or 2, the most ungodly, hellish nightmare began. Severe headaches that would begin in the left occipital area, and sometimes move to the top of my head, then the alternating chills or sweats , the physical anxiety, zappy sensations on my head and arms, back spasms, restless sleep.

 

Why isn't this working? What am I doing wrong? Did I do something wrong in the past that now makes this harder for me? Did I screw things up? I can't CAN'T go through this agony. I actually took a 300 mg gabapentin last night, slept slightly longer, feel slightly better today. I know using gabapentin is frowned upon, plus I'd have to taper off that too, but I am at a loss as to what to do. I don't want to hold for months and months. I don't even care it's my birthday today.  I wish I wasn't so sick from the Hypomagnesemia that I questioned the doctor prescribing Klonopin. Wish I had researched it. But she told me it would be easy to stop. Ended up being anything but. So many regrets, and I think my poor GABA receptors are so damaged. My whole brain is damaged.

 

ETA: Edited thread title since it's no longer my birthday.

If a 4% cut (0.5 mg) was too much, perhaps you should consider a daily micro-taper approach.  The reductions are much smaller.

 

Gabapentin isn't necessary discouraged.  It's just another drug that might have to be dealt with later on.  I had no difficulty with 300 mg.

If a 4% cut (0.5 mg) was too much, perhaps you should consider a daily micro-taper approach.  The reductions are much smaller.

 

Gabapentin isn't necessary discouraged.  It's just another drug that might have to be dealt with later on.  I had no difficulty with 300 mg.

 

 

Did you take gabapentin in a single 300 mg dose, or did you divide it up throughout the day in 3 100 mg doses?

 

I honestly don't think I could do a daily microtaper, I think the tediousness of it would be difficult with my autism. I haven't the faintest idea what's involved, and feel I would be overwhelmed.

Happy Birthday Lottie!!

 

I'm sorry you have to celebrate like this, I did too a few months ago!

 

I have a long complex story like yours, and I'm always trying to figure out answers.

 

I don't have any answers for you, but know how hard it is.

 

I just switched to liquid Ativan from sublinguals and my symptoms are so bad to even mention!!

 

know you are not alone!

 

I hope you can eat some cake or eat something special - I could have nothing!

 

Winnie

Happy birthday lottie x I celebrated my birthday with a massive wave, I’m so sorry ur struggling on your birthday too x sending u hugs x

Happy birthday, and I wish for you healing.

 

Gabapentin is only sometimes troubling for some people.  Generally, that is at high doses over 900 mgs.  It is much easier to taper than benzos.  I was at 300 mgs and tapered off easily over a month.  I had been on them a year.

 

I am not recommending.  I am simply saying the scary stories are not always everyone.  And many of those were on very high doses.

 

Are you doing something wrong?  No more than any of the rest of us.

 

I think consider reducing less.

If a 4% cut (0.5 mg) was too much, perhaps you should consider a daily micro-taper approach.  The reductions are much smaller.

 

Gabapentin isn't necessary discouraged.  It's just another drug that might have to be dealt with later on.  I had no difficulty with 300 mg.

 

 

Did you take gabapentin in a single 300 mg dose, or did you divide it up throughout the day in 3 100 mg doses?

 

I honestly don't think I could do a daily microtaper, I think the tediousness of it would be difficult with my autism. I haven't the faintest idea what's involved, and feel I would be overwhelmed.

 

I took 300 mg gabapentin at night.

 

A daily micro-taper isn't any more tedious than a regular cut and hold.  You would need a milligram balance, but they're readily available for under $25 from Amazon (Gem-20).  Many people here can walk you thru it if you choose to go that route.

Thank you all for the Birthday wishes. I think the Gabapentin helped, but I was scared to try it, afraid it would make me feel worse. I appreciate the empathy from those who have no advice to offer, and the feedback from those that did. It was hard not to cry today, I try to explain what I'm going through to others, and they simply don't get it, because they haven't been through it.

 

I'm going to see if I can see my Provider next week and discuss this with her. I did leave a messsage through the behavioral health specialist regarding the scary fall I had earlier this week, and my horrible W/D symptoms despite the small cut.

 

I just wondered if my past experiences messed my brain up, and this is why I am suffering so. Have I become so sensitized that I suffer greatly with such a small reduction (half of what Ashton reccomends)?

 

I still need feedback, I know there are knowledgeable people out there who might have an idea as to why I am responding so horribly.   

Sorry you're suffering. You know my own story. I could've dodged the bullet easily in so many ways, but didn't. These drugs are bad luck magnet. Most of us didn't really need to be put on them in the first place. I don't know how to help you other than to advise holding. I never needed to hold, because when I tapered I was asymptomatic. Ashton says hold however much you want. Anecdotal rule-of-a-thumb is to hold 6 months upon reinstatement. I read somewhere that it takes 6-12 months for glutamate receptors to downregulate, or something like that. I'm taking thiamine supplementation, based on this (I've no idea if it's doing anything positive for me, but it isn't making me worse). This is of no help to you, but is an interesting factoid Neurovation Labs is a company that is devoted to developing a drug that downregulates AMPA receptors. They want to use it for PTSD, but it may be able to help us. Unfortunately, they haven't even started yet, they don't even have a candidate drug.

Sorry you're suffering. You know my own story. I could've dodged the bullet easily in so many ways, but didn't. These drugs are bad luck magnet. Most of us didn't really need to be put on them in the first place. I don't know how to help you other than to advise holding. I never needed to hold, because when I tapered I was asymptomatic. Ashton says hold however much you want. Anecdotal rule-of-a-thumb is to hold 6 months upon reinstatement. I read somewhere that it takes 6-12 months for glutamate receptors to downregulate, or something like that. I'm taking thiamine supplementation, based on this (I've no idea if it's doing anything positive for me, but it isn't making me worse). This is of no help to you, but is an interesting factoid Neurovation Labs is a company that is devoted to developing a drug that downregulates AMPA receptors. They want to use it for PTSD, but it may be able to help us. Unfortunately, they haven't even started yet, they don't even have a candidate drug.

 

 

6 months!!!   Most sources I read said 2, because I was only off only 10 days and still had Valium in my system. I thought longer periods like 6 months were for those who had reinstated after a longer period of being completely benzo free for some time and having no benzos in their system.

6 months!!!   Most sources I read said 2, because I was only off only 10 days and still had Valium in my system. I thought longer periods like 6 months were for those who had reinstated after a longer period of being completely benzo free for some time and having no benzos in their system.

I don't think having a drug in your system matters much, except for the fact that having it in means you haven't gone paradoxical, which would otherwise be a risk upon reinstatement. The problem, as I understand it, is that cold-turkey / over-rapid taper upregulates glutamate receptors, which makes you at the same time both less responsive to benzos, and more sensitive to drops in benzo dosage. Of course, holding too long may cause downregulation of GABA_A receptors, leading to tolerance withdrawal.

 

I took 300 mg gabapentin at night.

 

A daily micro-taper isn't any more tedious than a regular cut and hold.  You would need a milligram balance, but they're readily available for under $25 from Amazon (Gem-20).  Many people here can walk you thru it if you choose to go that route.

 

 

Gabapentin has a short half life of 5 to 7 hours, so I'm thinking of 100 mgs 3x's a day. I took it again last night, and got 8 1/2 hours of sleep, so it sure does help with sleep.

 

I'll think about the micro-taper.

I don't think having a drug in your system matters much, except for the fact that having it in means you haven't gone paradoxical, which would otherwise be a risk upon reinstatement. The problem, as I understand it, is that cold-turkey / over-rapid taper upregulates glutamate receptors, which makes you at the same time both less responsive to benzos, and more sensitive to drops in benzo dosage. Of course, holding too long may cause downregulation of GABA_A receptors, leading to tolerance withdrawal.

 

So I majorly screwed myself up by tapering every 5 days, instead of Ashton's recommended 7 to 14, and being only off 10 days? I didn't even start having any symptoms until after day 4, I knew some thing was wrong by day 10, which is when urged to reinstate immmediately after finding BB. That makes me feel so much better pacenik, not! How the hell do I determine how long to hold? I can't imagine holding another 4 months.

So I majorly screwed myself up by tapering every 5 days, instead of Ashton's recommended 7 to 14, and being only off 10 days? I didn't even start having any symptoms until after day 4, I knew some thing was wrong by day 10, which is when urged to reinstate immmediately after finding BB. That makes me feel so much better pacenik, not! How the hell do I determine how long to hold? I can't imagine holding another 4 months.

As I've said I don't have experience in it, but I guess it goes by the trial-and-error process. When you're feeling stable enough, make a cut and see what happens.

Simple truth is that nobody knows how long you will need to hold until you become stable again.  Might just be a week or two.  While you wait, do what you can to be calm and healthy.

As I've said I don't have experience in it, but I guess it goes by the trial-and-error process. When you're feeling stable enough, make a cut and see what happens.

 

I felt stable enough, and I and my provider agreed to a very small reduction of .5 mg, and then I had all those major W/D symptoms. That's what happened. Hell, ungodly hell. Things are very slowly settling down 12 days later. I've visited the Long Hold Support Group at somene's suggestion for feedback from there. 

Simple truth is that nobody knows how long you will need to hold until you become stable again.  Might just be a week or two.  While you wait, do what you can to be calm and healthy.

 

 

I'm trying my best to do just that, but it's hard when you are suffering so much agony.

 

I am slowly feeling better 12 days since the cut.

 

I was told that cutting is done when symptoms are few and manageable, not when there are none (From Long Hold Support Group). I and my provider thought we were there, but apparently I wasn't.  I'm probably going to wait two weeks, I think one would be too soon.  Try again in February.

 

A daily micro-taper isn't any more tedious than a regular cut and hold.  You would need a milligram balance, but they're readily available for under $25 from Amazon (Gem-20).  Many people here can walk you thru it if you choose to go that route.

 

Doesn't that require crushing the pills and weighing the dosage?

I’ve held a month lottie. No improvement yet. Who knows when or if it will come

Crushing or breaking or shaving pills (and then weighing it out) is pretty easy.  No different than measuring out and crushing fresh herbs/spices when you cook.

 

A daily micro-taper isn't any more tedious than a regular cut and hold.  You would need a milligram balance, but they're readily available for under $25 from Amazon (Gem-20).  Many people here can walk you thru it if you choose to go that route.

 

Is there a group here for that? I ordered the scale and a pill crusher, but I am completely flummoxed as to how to do this.

Here's an example of a basic approach for doing a daily micro taper...

 

You will be reducing your dose on a daily basis based on how you're feeling.  We'll do this on a 10 point system.  If you're feeling decent (8/10 or better), you can reduce your daily dose by 0.5%.  So you'd multiply your most recent dose times .995, weight out and take that amount.  Your weekly rate would be about 3.5% if you were feeling pretty good.

 

If you're feeling a bit off (6/10 or 7/10), reduce your daily dose by 0.33% (multiply your most recent dose times 0.9967).  This lowers your weekly rate to 2.3%

 

If you're feeling pretty lousy (4/10 or 5/10), reduce your daily dose by only 0.17% (multiply your most recent dose times 0.9983).  This is only a 1.1% weekly reduction rate.

 

If you're feeling really lousy (3/10 or less), hold your current dose until you feel better.

 

Make sense?

Here's an example of a basic approach for doing a daily micro taper...

 

You will be reducing your dose on a daily basis based on how you're feeling.  We'll do this on a 10 point system.  If you're feeling decent (8/10 or better), you can reduce your daily dose by 0.5%.  So you'd multiply your most recent dose times .995, weight out and take that amount.  Your weekly rate would be about 3.5% if you were feeling pretty good.

 

If you're feeling a bit off (6/10 or 7/10), reduce your daily dose by 0.33% (multiply your most recent dose times 0.9967).  This lowers your weekly rate to 2.3%

 

If you're feeling pretty lousy (4/10 or 5/10), reduce your daily dose by only 0.17% (multiply your most recent dose times 0.9983).  This is only a 1.1% weekly reduction rate.

 

If you're feeling really lousy (3/10 or less), hold your current dose until you feel better.

 

Make sense?

 

No, I'm sorry, all that is confusing to me. I'm terrible at math stuff. I'd need to know precisely what the amount is, and someone to help me with that.

 

At any rate, I'm nowhere near stable, so even trying this will be weeks off. My .5 cut from 12 mg V I was told was only 4%, and I turned out to be a wreck as a result. I'm holding for God knows how long until this all settles down. It's been almost 2 weeks since I did that.

 

That's why I asked if there's a forum devoted to this, as I will need a lot of help. 

I am doing just terrible, the headaches are back, I either sweat or I have chills. My lower back goes into spasms. I feely sappy sensations on my face. I struggle to just get a shower, feed the cats (Thank God I have a Litter Robot so I don't have to scoop), make simple, bland , meals for myself.  I still can't help if my past experience messsed me up. I've read that sometimes things get worse before they settle down, and I'm hoping this is what's going on in my case. The agony just drags on and on, and I get no relief.

 

My Peer from Promise (it's an aftercare program my insurance covers) found a story about Dr Christy Huff. Apparently this doctor found BenzoBuddies, and used it during her taper. I don't know if she still posts here or what her username is. And yet my Caseworker from Kaledoscope (another aftercare program I receive servuces from), was able to stop his twice a day Klonopin, same dose I was originally on, .5 mg 2 x's a day, with none of the physical side effects, he cut his pm dose, than his am, and went through two months of psychiatric W/D's and that was it. Nothing physical except insomnia. He still has anxiety but found non-drug ways to cope. I posted about this in the thread titled "How Is This Possible"?

 

I noticed Dr Huff took over 3 years to slowly taper Valium. I also found the Long Haulers group where the members do prety much what she did. Guess I will start posting there. Ashton's typical process didn't work for Dr Huff, it clearly isn't working for me.

 

I keep telling the negative thoughts that keep intruding my brain to go away, and replace them with good ones. But it's so hard when you are suffering so intensely