Advice and Thoughts greatly Appreciated Re: Kindling and Tolerance in Tapering - I am so lost.

[[Da...]]

 

Hi All,  As Real and Open as it Gets...Please Help   

I shared my post on another thread and am looking for advice on how to taper.  I was on Clonazepam 1mg 2X Daily for about 22 years with 2-4 cold turkeys in between - man I wish I had stuck with those!  Was also on Clonodine for 3 years and Zopliclone for 10 years (Shouldn't that be enough to knock a horse down?  Maybe but not 96lbs me  ).  I went to rehab for 2 weeks 7 months ago for what was supposed to be a 7 week taper.  While there, they switched me completely from 1mg 2X Day Clonazepam to Diazepam 7 mg 2XDay, (another Cold Turkey) they took the Clonodine away, (yet another cold turkey) and added Seroquel and Lyrica......this was my first experience with depersonalization/derealization - very scary!  I left after 2 weeks and stopped the Lyrica and the Seroquel.  The Clonodine was already gone.  

Once home,  My Psychiatrist put me back on Clonazepam 1 MG 2X Daily while having me try other meds...zoloft, Wellbutrin, risperidone....which of course did not work and because I was only on them a short time told me to stop.  He said I had to reach a stable level to start weaning, which is impossible with kindling and tolerance. (Something he doesn't believe in)  The only way was to possibly switch to a higher dose of a more potent Benzo as it appears Clonazepam has run its course.  (I'm thinking I  may as well try Heroin, apparently it's easier to withdraw from! Kidding!)  So,  I tried to taper myself once again, cutting and trying different rates over a two week periods for 6 weeks.  The problem is since that one day when I woke up with crippling anxiety and fear, I have not been stable on anything.  I am guessing it's been 8 months now that I have been non-functional with extreme withdrawals.  I am talking about extreme fear of seeing someone outside, going ANYWHERE, answering calls, checking email, watching tv even seeing my daughter who is away at college (Please, if you can, explain why I am terrified to see or talk to even my own family...is it shame? Guilt? Has anyone else experienced this?  I feel like a sociopath!).  In addition, I have severe anhedonia and apathy that I am told may or may not go away.  There is a good YouTube video that explains what's is happening in the brain so I know I am not in control of this.  I have not been out of the house in months, haven't socialized, my husband, who can no longer sustain his level of support, (he is 10 yers older than me) has been doing everything.  I even had to give him power of attorney to sell a property of mine as I cannot even think about day to day activities.  Showering, eating, getting dressed is a struggle and I no longer care about how I look.  My normal day (with the exception of today and yesterday) consists of getting out of bed at around 9 AM then returning to the bedroom by 11 AM, staring into space, rocking from side to side praying for God to take me, with  a continuous reel playing in my head of every bad thing, perceived or real, I did since as far back as I can remember, (and I have a very deep memory bank,) playing over and over telling me I deserved this torture. My body is in a constant stake of shaking, migraines are back, sinuses are bad (MRI showed a polyp on Paranasal Cavity) I can't read, watch tv or engage in any activity except read and research different things that may give me some answers.   I literally have myself pushed into a black hole of the Most horrible person ever!  I have aged 20 years overnight with a 30lb weight loss!  I had digestion issues since I was a kid tho. I decided that since I was already in HELL, I may as well start again and I stopped the midday dose of 1 MG Clonazepam.  That was 5 or 7 Days ago.  I don't feel any worse because of it, if anything I feel a tad better as I am able to sit and write this post as well as numerous others today and yesterday.  I also managed to call one of my sisters who I hadn't talked to in months.  My family and friends are so worried and I feel guilty for that too.  

The problem is, I haven't been stable for months and months...with the kindling and tolerance.  I am literally 1 step away from needing full time care.  I know there are other medical issues going on; I have Chronic Small Vessel Disease as shown on MRI (I paid for a private one) so I have to wait for a referral to Neurologist to see what is going on.  I don't know where to go from here.  There seems to be no way to get myself stable unless I try other medications so, some questions are:  do I hold and wait for anything physical that might be contributing to the severity of the symptoms and treat that first or should I keep going with the taper as it is doing nothing for me anyway?  If I hold at 1mg it will be over a month hold or two, (possibly more) as I await results of other tests.   If I should continue with the taper, as I think I should, how should I go about it?  I would need precise help as my brain is putty and fog.  The problem with holding is that I am never at a functional or stable place.  The Pharmacist, who has been a doll throughout this suggests that the Seroquel might help stabilize me as she knows that 1. I have no response from the current dosage of Clonazepam and 2. she knows how hard I am trying to get off it.  She has been with me from the start.  She said Effexor is also on my file and thinks that might help but she would help me wean off that.  With her telling me it, too has to be weaned slowly, I am scared though I know many people who have great luck with Effexor and do not care if they take it forever because it makes them feel human.  The pharmacist also said she is not worried about Seroquel and would rather see me take that for a while than to increase the Benzo.  Increasing the Benzo is NOT going to happen.  I worked in the field of MH myself, and I have yet to see someone in the shape I am in.  One lady only in the hospital, who is my age and they are not sending her home, she has to go to assisted living (she's on benzes too)!  I am kinda, no not kinda, VERY lost on what to do next.  I cannot get the reels to stop playing, I cannot stop the emotional/psychological experiences especially Anhedonia, I cannot take hiding from my daughter,  and I cannot take not being well enough to leave to give my husband his life back.  If I were to return to the hospital they would be recommending long term care I am sure because I cannot do anything.  It is being stuck on a ferris wheel that has no stop switch.  Is there any hope, given I have no baseline for stability?  How many years will this drag out?  Has ANYONE been at this level.  Remember this was BEFORE I cut by half.  If you any advice, experience on any of the points I made please, please share.  Sorry for the long post.  I may be wrong but I am gathering that everyone here who is doing a taper, has a reference point for stability and their body is guiding them.  I am scared of where my body and mind is guiding me.  I only have you guys now.  TY all so much! 

 

Edited January 11 by [Da...]

[[pi...]]

Hello @[Da...],

I am very sorry you have had to endure so much due to benzos and other medications added to the mix. Your rehab was a cold turkey. Clonazepam is much stronger than diazepam and they did not cross you over to an equivalent amount. Even though this experience was 7 months ago I would think you are still feeling the effects of that cold turkey. It can take a while to recover from benzo withdrawal, 7 months is actually early in the process. I was on a low dose of benzos and it took me about 16-17 months to recover.

Reinstatement is tricky. Sometimes it works and other times the body has a hard time adjusting to the reinstatement. How long have you been back on clonazepam 1 mg? Stability does not mean you won’t be symptomatic, I never was. I had a slight easing of symptoms but I forged ahead because I knew the drug was making me sick.

In my years here I’ve seen many people in dire situations, virtually non functional, come through this process and recover. I was pretty non functional  during the worst part of tolerance and early off. Things improved very slowly. I know of people who also had a hard time being around others, even family. They also recovered.

Benzos make significant changes to the central nervous system . The reset is not immediate, as much as we would like it to be. This process takes patience, acceptance and belief in healing. It’s not a race, slow and steady is the way to go.

[[Da...]]

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

How long have you been back on clonazepam 1 mg?

Hi Thank you for your response :).  I was reinstated on 2 mg per day for 6 months and about a week ago I went to 1mg on my own because the midday dose seemed to have been making more anxious.

[[pi...]]

6 minutes ago, [[D...] said:

Hi Thank you for your response :).  I was reinstated on 2 mg per day for 6 months and about a week ago I went to 1mg on my own because the midday dose seemed to have been making more anxious.

That is a huge reduction from a very strong benzo. However, it appears you are having a paradoxical reaction to the med. I am not an expert at tapering, mine was rough because my doctor and I were learning together, but it might be wise to look at very small dose tapering either using a scale and dry cutting or obtaining a liquid formula of clonazepam. It’s very hard for the cns to adjust to such big reductions. 

[[Da...]]

I just read the article on Risperdal....I was in the hospital and was on this drug for 3 months.  I stopped it immediately when I got home.  Would 3 weeks of this drug, administered twice a day be contributing to my symptoms as well.  I didn't wean after 3 weeks.

[[pi...]]

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

I just read the article on Risperdal....I was in the hospital and was on this drug for 3 months.  I stopped it immediately when I got home.  Would 3 weeks of this drug, administered twice a day be contributing to my symptoms as well.  I didn't wean after 3 weeks.

I don’t have any experience with risperdal. It is an anti-psychotic. I would think stopping any of these types of drugs suddenly would have an impact. Additionally, one of the side effects listed is anxiety. 

[[Da...]]

7 minutes ago, [[p...] said:

Additionally, one of the side effects listed is anxiety. 

yes I was given Effexor as well.  

[[Da...]]

@[pi...] SO I talked to the pharmacist and yes even after only a couple of weeks, Effexor has to be tapered......she tried it for 3 weeks and said it was hell to come off, she had to go slow.  6 months ago I was cold turkeyed from Clonodine.  I cold turkeyed resperidone after 3 weeks as well as Effexor!  Then a week ago I cut my Clonazepam by 1/2....Makes sense I am in hell!   It's crazy how they use so many drugs for off label use!!!  It has been a very rough day with the spasms and body jerks and sure enough a HUGE side effect of Resperidone!  I am just happy I stopped it.  Before cutting my Clonazepam, I should have consulted with the pharmacist but I am not turning back now because I get the feeling it will be much worse to start again to taper slowly given how many times I have been on and off this drug.  Still wondering, as I cannot imagine anything worse than this, if I should say the heck with it and just stop the other 1mg to get it over with!!!  I am scared tho.  If I were alone somewhere I would definitely do it!