LookupJ: benzo withdrawal no 2 - help required

[LookupJ]

I completed "benzo withdrawal No 1" in 2019.  About 2 years later I went back on 10mg diazepam because of protracted symptoms (worsening pain and severe insomnia).  

 

However, this diazepam re-instatement didn't cure my symptoms, so I began "benzo withdrawal No 2" in January 2022.  I reduced my diazepam dose to 5.75mg, but then stopped the withdrawal for 4 ¹/₂ months because my symptoms (which all relate to a vibrating nervous system) continued to worsen and 'strike' earlier and earlier in the day. 

 

Unfortunately, my symptoms did not 'settle' during this pause but continued to worsen, so I re-started this "withdrawal No 2" two weeks ago.  I reduced my dose by 0.25mg (to 5.5mg) on 9 November 2022, and then by a further 0.25mg (to 5.25mg) on 16 November. 

 

My plan was to reduce my dose by 0.25mg every week whatever the pain.  

 

Why?  Because the Ashton Manual Supplement (www.benzo.org.uk/ashsupp11.htm#supp2) states that: "The truth is that one never 'stabilises' on a given dose of benzodiazepine. The dose may be stable but withdrawal symptoms are not. It is better to grit one's teeth and continue the withdrawal. True recovery cannot really start until the drug is out of the system."

 

However, my symptoms are horrendously painful [roaring, ringing tinnitus; dental 'vibrational' pain; internal vibration (like a motor); deep burning; and disrupted breathing] and I don't know if I can bear the (very severe) pain much longer.

 

It is possible that these (protracted) symptoms would have worsened despite my 0.25mg reductions, in which case following Ashton's advice (above) and continuing with these weekly withdrawals seems to make sense.

  

What do I do?  Pause (again), or continue with my 0.25mg reductions ?

[manymoretodays]

Hello LookupJ,

Welcome aboard.  And thank you thank you for doing your signature for us.

When did you start the quetiapine?

When did you start the Epilim?

Year and month would be helpful.

 

Could you also tell us, just in a reply, when you take each of your drugs each day?  Thank you.

 

On 11/21/2022 at 3:47 AM, LookupJ said:

My plan was to reduce my dose by 0.25mg every week whatever the pain.  

 

I don't think this ^ is a great plan, or I wouldn't get so hyperfocused on having to be off a benzo that I would get haphazard with tapering.  It does appear from your signature that you started with a benzo and then benzo WD(withdrawal) may have led to other medications, and likely some bogus diagnonsense too.

 

Is your goal to attempt to get drug free one day?  Sounds like it.

 

On 11/21/2022 at 3:47 AM, LookupJ said:

Unfortunately, my symptoms did not 'settle' during this pause but continued to worsen, so I re-started this "withdrawal No 2" two weeks ago.  I reduced my dose by 0.25mg (to 5.5mg) on 9 November 2022, and then by a further 0.25mg (to 5.25mg) on 16 November. 

 

Okay, you started tapering from a dose of 5.75 mg of Valium 2 weeks ago? 

So if you went to 5.5 mg, you would have done a 4.4% taper from the 5.75 mg.

AND we don't often recommend tapering when one is worse, although......if you are grossly overmedicated, some tapering might be called for.  I don't know yet what is going on.

And then you went from 5.5mg to 5.25 mg Valium, 10 days ago.   You stated 16 November.  Again, percentage wise this looks okay.  I get a 4.6% taper from your 5.5 mg dose.

 

Only problem is.........you only went a weeks time between tapers.  We go with a 10% or less taper, with a HOLD period of 4-6 weeks.  Or if doing a micro-taper- smaller amounts weekly but not to exceed more than a 10% cumulative taper in a months time.   So.....you didn't do badly, it was apparently just too much, too fast.   You did a 9% taper over 2 weeks, which in itself.....isn't so bad.  Could be that you were not doing great when you began, or........maybe you will tolerate 5% or less tapers each months.

Micro-taper instead of 10% or 5% decreases

 

On 11/21/2022 at 3:47 AM, LookupJ said:

However, my symptoms are horrendously painful [roaring, ringing tinnitus; dental 'vibrational' pain; internal vibration (like a motor); deep burning; and disrupted breathing] and I don't know if I can bear the (very severe) pain much longer.

 

What I would do now, if I was you.  I would updose the Valium back to 5.5 mg.  It's only been 10 days now and my hope is your intensely painful symptoms will subside a bit.

 

Okay, more general information in my next post regarding tapering the harm reduction way, and WD(withdrawal), and more of our general principles.  Bear with me.

Edited November 26, 2022 by manymoretodays
bolding, micro-taper link added

[manymoretodays]

Okay, hi again.

As I don't know what you have read here, I'm going to give you lot's of information now.  You'll have it here to reference, and do just take it at your own pace to look at and read.  The underlined passages take you to a topic or link you to a topic.  Do scroll up, and start at the first post, if the link takes you to another page in the topic, or to the end of the topic.

 

We go with a harm reduction model for tapering or deprescribing here.  And this is what that looks like:

Why taper by 10% of my dosage?

We do also have a benzo area here, but it isn't staffed right now.  AND with you being on 3 medications now too, you belong right here I think.

Benzo tapering and recovery

Do please go ahead and look at some of the top pinned information there.  You'll find more on the Ashton manual there, and see that we don't always go directly with all of that advice.  Heather Ashton was a pioneer though, a great women I think.  A hero, with what she did, at the time she did with de prescribing.  All due respect.   Some of her recommends are just a bit outdated now though.

 

About reinstating and stabilizing to reduce withdrawal symptoms

And okay, I mentioned what I would do if I was in your shoes now.  I would try an updose from 5.25 mg of Valium now back to 5.5 mg of Valium.  Again, I think 10 days is safe to do this in, with Benzo's.  And I hope it will relieve some of the utter severity of symptoms you alluded to.

Would you please update us, as to how this is going, if you do decide to updose now.  Thank you.

 

I do realize you are in the thick of it now, but these may be helpful:

Before you begin tapering-what you need to know

Tips from members: Preparing to Taper

 

We do have tapering topics on quetiapine and Epilim, so I am going to put those here:

 

Epilim is the brand name I believe for:

Tips for tapering off sodium valproate and valproic acid(devalproex sodium, Depakote, Depakene)

 

Tips for tapering off Seroquel(quetiapine)

 

And okay, you are on 3 potent drugs/medications now, and so......:

Tapering multiple psych drugs? Which drug to taper first?

 

Are you feeling pretty sedated and out of it most of the time?  Your drugs are all brakes.  And oh my gosh, you must be miserable.  How did this happen??

 

AND, again I don't expect you to read all topics today or right now.......here is what happens when we do try to come off our psychoactive drugs, and more about WD(withdrawal):

 

Brain Remodelling

What is Withdrawal Syndrome?

 

 

Dr.Glenmullen’s withdrawal symptom list.

Look at the PDF that is downloadable, to see some of the many symptoms of WD

 

The Windows and Waves Pattern of Stabilization

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made.  The CNS likes stability. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur. And sleep is really important during withdrawal. 

 

Are you taking any supplements or anything else right now(drugs for medical conditions even)?

 

Welcome again.  And do, try to be patient, as you have been........ as we try to get to know your case a bit better........before offering too much more in terms of support, advice or suggestions.

Do try to answer the couple of questions that I had.  I'll go back now and bold them.  I had a request in my first reply, and a couple here in this one as well.  Thanks in advance.

 

This is your introduction/journal page where you have now introduced yourself to the community, you can ask questions here regarding your case and tapering, give updates, and communicate with us here,  and keep a record of your journey.

 

Love, peace, healing, and growth,

manymoretodays(mmt)

 

 

 

Edited November 26, 2022 by manymoretodays
none

[LookupJ]

Hi manymoretodays

 

Thank you for helping me.

Here is the information that you requested ...

 

QUETIAPINE:        

Started in 2007

 

"DEPAKOTE" (valproic acid) …

Started Depakote 1250mg (a mood stabiliser) in 2010 (and reduced it to 500mg in 2018)

 

… replaced by "EPILIM" (sodium valproate)

Then, in August 2020, I halved this Depakote to 250mg AND WAS SWITCHED from "Depakote" (tablets) to 6.25ml "Epilim" (liquid), which is equivalent to 250mg Depakote.  

 

The intention in 2020 was to reduce the EPILIM to zero, but I only reached Epilim 4ml (equivalent to 160mg Depakote) in Sept 2020 because I thought that this Epilim withdrawal could affect my sleep.  NOTE: my "benzo withdrawal No 1" had just finished in Oct 2019 and my sleep (like now) was only 2 to 4 hours / night.

 

ADDITIONAL MEDICATION started after "benzo withdrawal No 1" (that was completed in 2019)

1)       GABAPENTIN 1800mg (for benzo withdrawal-related dental pain)

Started in January 2020 (about 3 months after finishing "benzo withdrawal No 1")

Halved dose to 900mg (in 2 weeks in Sept 2022, then reduced by 100mg on 09 Nov 2022.  Currently on 800mg but want to avoid doing 2 withdrawals at once). 

2)       Occasional zopiclone and promethazine (for sleep)

 

 

ADDITIONAL MEDICATION started after "benzo withdrawal No 2" (that was started on 03 March 2019)

(Put on diazepam 10mg in Jan 2022 & withdrawal began in March 2022, although had been taking the odd 2mg diazepam since about July 2021)

1)       Mirtazepine 15mg (for benzo withdrawal-related insomnia)

Started in January 2022, and replaced by Amitriptyline in September 2022

2)       Amitriptyline 10mg  (for benzo withdrawal-related insomnia)

Started in September 2022 (but sleep is only 3 to 4 hours / night)

3)         Avoiding zopiclone and promethazine

 

MEDICATION TIMES

Gabapentin:                8am (300mg); 3pm (200mg); 10pm (300mg)

Diazepam 1.25mg       9am

Diazepam 4mg            9pm    

Quetiapine 550mg      9.30pm

Epilim 4ml                    9.30pm

Amitriptyline 10mg     9.30pm

Multivitamin & mineral tablet    5pm

 

SLEEPY ?

 Despite my severe insomnia and medication (3 hours last night), I have never felt 'sleepy' since the start of  "benzo withdrawal No 1" in 2019.  For example, I never yawn.

 

SYMPTOMS WORSEN OVER THE DAY

My symptoms are now hell from the morning, but have always progressively worsened over the day. 

 

CURRENT AIM

To reduce the diazepam to zero doing cumulative 10% reductions (or less) per month as you advise.

But my symptoms are absolute hell at 5.25mg diazepam, and did not settle when I stayed on 5.75mg for 4 ¹/₂ months, but instead steadily worsened.  I shall ask my GP for advice next Thursday 1 December.

 

NOTE:    NEW SYMPTOMS (After "Benzo Withdrawal No 1")

Three symptoms (internal vibration; tinnitus; and 'slowed' breathing) began in January 2021 (about a year after completing "benzo withdrawal No 1").  This internal vibration used to 'strike' only in the evening, but gradually 'struck' earlier and earlier, and is now very much present in the morning.  The tinnitus also followed a similar pattern.  Gabapentin, started in January 2020, can cause tinnitus, but I can find no evidence (anecdotal or otherwise) that it can cause internal vibration, which is the symptom that disrupts my breathing (from about 5pm).  However, Asthon writes (regarding benzo withdrawal): 

"Burning and Inner Trembling: A number of unpleasant bodily sensations may persist after withdrawal including  …  burning pain or aches that sometimes seem to originate deep in the muscles or bones. Some people complain of an "inner trembling" or a sense of vibration, etc" ... (www.benzo.org.uk/manual/bzcha03.htm#t3)

 

I hope some of this information helps (because I'm in extreme 'vibrational' agony)

LookupJ

[manymoretodays]

Hi LookupJ,

Okay, thanks for more information.  Your first post/reply is just a quote of my post, so I will get rid of that.

 

You do not wish to updose your diazepam then?

 

And that is good information that you shared from the Ashton manual.  Thank you.  We do however, often do it a little different as much of that was written long ago, and over time, we've found some things that might work better.  You are also NOT just working with a benzo WD anymore.  You are on a cocktail basically to try and treat what likely have been previous benzo withdrawals.

 

On 11/29/2022 at 4:56 AM, LookupJ said:

Gabapentin:                8am (300mg); 3pm (200mg); 10pm (300mg)

Diazepam 1.25mg       9am

Diazepam 4mg            9pm    

Quetiapine 550mg      9.30pm

Epilim 4ml                    9.30pm

Amitriptyline 10mg     9.30pm

Multivitamin & mineral tablet    5pm

 

Ooof, that's a drug cocktail alright   Let's look at or do an interactions check next.

Drugs.com is great for checking drug interactions and I'll do yours now.

 

Hey I am just now doing a re-do on your interactions, I forgot to add the quetiapine.  I substituted Depakote for the Epilim.

Here's the link to the results:

https://www.drugs.com/interactions-check.php?drug_list=1147-0,862-441,168-0,918-484,1979-0&types[]=major&types[]=minor&types[]=moderate&types[]=food&types[]=therapeutic_duplication&professional=1

 

I made a mess of the previous reply trying to copy it all over here.

Scroll down to see the food interactions as well.

And the therapeutic duplication section.

Your present combination has 10 moderate interactions!  Yow.

 

What do you think of this?

And you will have to create an account there to see, as you have more than 4 drugs.  You can switch from professional to consumer view too.  They will not inundate you with emails or anything either, once you register.

 

I'll continue, in the next reply box. to respond a bit more, to your most recent post.

Edited December 2, 2022 by manymoretodays
redo drug interactions, it was too bulky, and I had left out the quetiapine

[manymoretodays]

Anyway.......what do you think of those interactions?  They blow me away.

 

So now I'm seeing the quetiapine may have been your first drug in 2007, and then the Depakote and Epilim.

 

Were any of your previous trials to get off drugs, or get off a drug tapers, using the 10% or less method of each previous dose?

What were you being medicated for, if you don't mind saying?

 

On 11/29/2022 at 4:56 AM, LookupJ said:

CURRENT AIM

To reduce the diazepam to zero doing cumulative 10% reductions (or less) per month as you advise.

But my symptoms are absolute hell at 5.25mg diazepam, and did not settle when I stayed on 5.75mg for 4 ¹/₂ months, but instead steadily worsened.  I shall ask my GP for advice next Thursday 1 December.

 

NOTE:    NEW SYMPTOMS (After "Benzo Withdrawal No 1")

Three symptoms (internal vibration; tinnitus; and 'slowed' breathing) began in January 2021 (about a year after completing "benzo withdrawal No 1").  This internal vibration used to 'strike' only in the evening, but gradually 'struck' earlier and earlier, and is now very much present in the morning.  The tinnitus also followed a similar pattern.  Gabapentin, started in January 2020, can cause tinnitus, but I can find no evidence (anecdotal or otherwise) that it can cause internal vibration, which is the symptom that disrupts my breathing (from about 5pm).  However, Asthon writes (regarding benzo withdrawal): 

"Burning and Inner Trembling: A number of unpleasant bodily sensations may persist after withdrawal including  …  burning pain or aches that sometimes seem to originate deep in the muscles or bones. Some people complain of an "inner trembling" or a sense of vibration, etc" ... (www.benzo.org.uk/manual/bzcha03.htm#t3)

 

Well, my best suggest, for right now, was to have you updose the diazepam back to just 5.5 mg.  In hopes that your most recent symptoms might improve a bit.   And again, the time frame for that, I believe should be within 2 weeks of when you did the reduction.  Do you use other benzo sites or forums like benzo buddies, or have you ever looked at the Benzo Information Coalition online?  These may or may not be helpful to you, likely helpful.  And I like the benzo.org.uk site a lot too.

 

You are overmedicated right now.  Is this doctor you see that prescribes all this, your GP?  This is a crazy combination.

 

Okay, well next up, if you'll bear with me, would be to have you do a few days of NOTES, and I'll show you how.  You did great just listing your times of drugs and names and doses.  For NOTES, just do the times on the left, and then on the right you again note drug(s) by name and dose, any supplements by name and dose, and then also add in your symptoms- to the right of the times.  Note the times, even when not taking a drug, and describe your symptoms as they occur.  Some will rate them on a scale of 1-10, 10 being the worst, once they' ve described them.  That way.......we can start to get a feel for how each drug effects you.  So we need to see symptoms before and then after each drug.  And also note your sleep, over on the right.  Here's a link with a sample NOTE for you to see too, and more about what I am asking you to do.  When you have 24 hours done of NOTES, post them right in a reply.  Try for a couple of days, at least, 3 is great. 

And I need to consult with other staff around your case now too.  So I will put you in for that as well.  I don't claim nor do I have much benzo expertise, and some others here do.  And your case is just complex.  So again, bear with me.  Thank you.

 

 

 

You can just click on the arrow at the top right to see the post ^

 

Are you interested in trying a more harm reduction way to go off any of your medications?  Your breathing symptoms are scary. 

 

That vibrational stuff you are describing, is that like this at all?

Tremors, shaking, body vibration, , internal trembling

 

Okay, all for now.  Sorry I just saw your responses to look at today.  And hang in there, I know it's tough right now.  And I do hope we can offer some help to you with your drug reductions.

 

Best.  L, P, H, and G,

mmt

[Dragoon909]

On 11/21/2022 at 5:47 AM, LookupJ said:

I completed "benzo withdrawal No 1" in 2019.  About 2 years later I went back on 10mg diazepam because of protracted symptoms (worsening pain and severe insomnia).  

 

However, this diazepam re-instatement didn't cure my symptoms, so I began "benzo withdrawal No 2" in January 2022.  I reduced my diazepam dose to 5.75mg, but then stopped the withdrawal for 4 ¹/₂ months because my symptoms (which all relate to a vibrating nervous system) continued to worsen and 'strike' earlier and earlier in the day. 

 

Unfortunately, my symptoms did not 'settle' during this pause but continued to worsen, so I re-started this "withdrawal No 2" two weeks ago.  I reduced my dose by 0.25mg (to 5.5mg) on 9 November 2022, and then by a further 0.25mg (to 5.25mg) on 16 November. 

 

My plan was to reduce my dose by 0.25mg every week whatever the pain.  

 

Why?  Because the Ashton Manual Supplement (www.benzo.org.uk/ashsupp11.htm#supp2) states that: "The truth is that one never 'stabilises' on a given dose of benzodiazepine. The dose may be stable but withdrawal symptoms are not. It is better to grit one's teeth and continue the withdrawal. True recovery cannot really start until the drug is out of the system."

 

However, my symptoms are horrendously painful [roaring, ringing tinnitus; dental 'vibrational' pain; internal vibration (like a motor); deep burning; and disrupted breathing] and I don't know if I can bear the (very severe) pain much longer.

 

It is possible that these (protracted) symptoms would have worsened despite my 0.25mg reductions, in which case following Ashton's advice (above) and continuing with these weekly withdrawals seems to make sense.

  

What do I do?  Pause (again), or continue with my 0.25mg reductions ?

 

Hi there lookupj,

I came off klonopin 10 years ago. I never could stabilize on it once tolerance hit. Unfortunately I went to detox (don't do this). I would personally taper it down, even if you don't feel completely stable. 

 

And I agree it's better to bite your teeth and just go through it, so you can recover. 🦋 

 

I know it's scary and unnerving, but you'll make it. You'll have your life back. 

 

I completely healed from detoxing 4mg of klonopin. I was on it a good 9 years. 

 

I just recently had a setback from taking a collagen supplement (I'm an idiot). I really am, should've known better. 

 

I do hope you start feeling better. ❤️ 

 

I think you can do this. 🌟 

 

Good luck, and I hope you better days. 

 

[Shep]

On 11/29/2022 at 6:56 AM, LookupJ said:

Epilim 4ml                    9.30pm

 

LookupJ, how many milligrams is in 4 ml of Epilim? 

 

9 hours ago, manymoretodays said:

Well, my best suggest, for right now, was to have you updose the diazepam back to just 5.5 mg.  In hopes that your most recent symptoms might improve a bit.

 

I agree  with @manymoretodays that this is a good place to start. Benzo updoses work best within 2 - 4 weeks of a reduction, so you're in a good timeframe to do this updose. 

 

On 11/29/2022 at 6:56 AM, LookupJ said:

QUETIAPINE:        

Started in 2007

 

Your signature only starts in 2019. Please tell us more about your quetiapine history. Have you always been on 550 mg? Have there been in changes in the dose for quetiapine over the past 2 years?

 

What we need:

 

• Please let us know how many milligrams are in 4 ml of Epilim
• Please let us know your thoughts on updosing the diazepam back up to 5.5 mg
• Please let us know any changes in the quetiapine dose over the past two years
• Please start a drug and symptoms journal - instructions are here: Drug and Symptoms Journal Instructions

[LookupJ]

Thank you Manymoredays for all your help.

 

1  KEY PROBLEM =  a high-freqency vibration of the nervous system

     All my benzo withdrawal symptoms relate to vibration of the nervous system:

— 'deep' burning;

— dental 'vibration';

— tinnitus (nerve vibration);

— an internal vibration in my 'gut';

— and  'slowed' or disrupted breathing.

I suspect that the internal vibration is affecting my 'phrenic nerve' that controls my diaphragm.

 

2  DRUG INTERACTIONS

Thank you for the drugs.com information.  I note that I have 5 medicines in the 'CNS drugs' category (diazepam; amitriptyline; quetipine; gabapentin; and epilim), rather than the recommended maximum of 3 (but that the "benefits may outweigh the risks").  Ideally, in the long term, I'd choose only to be on quetiapine to control my bipolar disorder. 

 

3  DIAZEPAM 5.25mg

I am sure that my symptoms are protracted benzo withdrawal symptoms ramped up by my current diazepam withdrawal.  I therefore think it's best to focus on stopping the diazepam.  The Helpline (see section 10 below) have advised me that my current withdrawal will worsen my sleep patterns (already wrecked from my "Benzo Withdrawal No 1").

 

4  AMITRIPTYLINE 10mg (for sleep)

In January 2022, I was put on mirtazepine 15mg AND diazepam 10mg to help my benzo-withdrawal-related insomnia and pain.  My sleep improved marginally for a month or so, but I quickly became tolerant to whatever was helping.  My GP therefore replaced this mirtazepine with amitriptyline (over a period of 1 week in September 2022).  However, I continue to sleep for only 3 or 4 hours per night. 

 

AMITRIPTYLINE WITHDRAWAl?  I don't want to risk stopping this amitriptyline at the moment because: i) it might be helping my sleep a little; and ii) I do not want to do 2 withdrawals at once. 

 

5  QUETIAPINE 550mg and EPILIM 4ml (sodium valproate)
[this Epilim is equivalent to 160mg 'depakote' (valproic acid)]

My psychiatrist wants me to keep the quetiapine to control bipolar disorder, which is fine by me.  The depakote (recently replaced by liquid epilim) was initially prescribed for that as well, but she wants me to stop taking it (probably because it could be contributing to my very low blood counts — my platelets count is about 100 only).

 

EPILIM WITHDRAWAl? I could stop the (fairly low dose of) epilim, but I'm reluctant to do so before recovering from my benzo withdrawal symptoms because: i) it may be helping control my bipolar disorder (at a critical time); ii) it's probably helping my sleep a little; and iii) a reduction could upset my nervous system even more. 

 

6  GABAPENTIN WITHDRAWAl?  Gabapentin was prescribed by the Pain Clinic in January 2020 to help my benzo-withdrawal-related dental pain.  My GP (wisely) wants me to stop it (maybe because after 3 years I'm probably tolerant to any benefit it had).  I've already halved my dose from my 1800mg to 800mg, and my last gabapentin reduction (of 100mg) was in mid November 2022. 

 

It would be a relief to (slowly) stop the gabapentin, but I'm reluctant to do so because: i) it might be reducing the benzo w/d-related dental pain; ii) some people report 'horrendous' gabapentin withdrawal symptoms (including pain and insomnia); and iii) a reduction could upset my nervous system even more; iv) I'm very much in benzo withdrawal at the moment, and the benzo helpline told me not to attempt 2 withdrawals at once

 

7  DILEMMA:  Stopping the gabapentin AND the epilim seems a no-brainer.  However, my nervous system is already (painfully) 'vibrating' intensely and I worry that a reduction in either drug could upset my nervous system further.  In addition, I'm pretty sure that it's my benzo withdrawals that are causing this nervous system overactivity, and not the gabapentin or epilim.

 

8  MEDICAL HISTORY and 10% REDUCTIONS:

I've checked my NHS medical records and note that I've been on a host of other medications in the past [e.g. pericyazine, citalopram (2007), olanzepine (2012), fluoxetine (2012), propanolol (2012)].  I don't remember what method was used to reduce these drugs, but am sure it wasn't the 10% method.  Before my (life-changing) benzo withdrawal problems, I (possibly idiotically) trusted that the doctors 'looking after' me knew what they were doing. 

 

I also note that I've only been put on benzos on and off over the past decade or so (I think for anxiety).  The risks weren't pointed out to me and (idiotically) I was never aware that drugs such as clonzepam (klonopin) were 'benzodiazepines' .  It's possible that during this period I was locked in a never-ending cycle …benzo → (mild) withdrawal anxiety → benzo → (mild) withdrawal anxiety.

 

9  CURRENT BENZO WITHDRAWAL 'ANXIETY': 

Since the beginning of my (mismanaged) 2019 diazepam withdrawal (and for the first time in my life) I haven't socialized or watched TV.  I find it distressing to talk on the phone (and have to stick to notes).  Currently, I do have a prescription for pericyazine and my psychiatrist has suggested taking up to 30mg of it to 'control my anxiety'.  However, despite my benzo withdrawal 'anxiety', I choose not to take it in order to avoid additional 'polypharmacy' and unknown side effects.

 

10  BENZO WEBSITES, etc

I very occasionally access Benzobuddies (e.g. to search for terms such as 'vibration'), but I find the website's moving icons difficut to cope with.  I also sometimes search for items on the benzo.org.uk site.  A benzo helpline (a small charity) told me not to updose to 5.5mg because "it might not work".  They advised me to hold at 5.25mg for a maximum of 3 months.  I now wish that I hadn't done the latest 0.25mg diazepam reduction in the first place.

 

11  WHY DO I TOLERATE SUCH PAIN ?  

Professor Ashton spells out the main features of benzo withdrawal in an open letter (www.benzo.org.uk/chaheath.htm).  In particular, she notes that patients in her Withdrawal Clinic were often in "intense pain", which also reflects the anecdotal evidence provided by the Benzo Helpline.  I am therefore trying to tolerate the agony in the hope that I shall one day recover like others have (anecdotally) done so in the past.  Unfortunately, there is no research evidence to guide me.

 

12  SYMPTOMS

I'll try to start recording my symptom patterns in the way that you have suggested.

 

13  REPLY TO 'SHEP' and 'DRAGOON909' to follow …

I now need to lie down !

 

 

LookupJ

[Shep]

8 hours ago, LookupJ said:

My psychiatrist wants me to keep the quetiapine to control bipolar disorder, which is fine by me.  The depakote (recently replaced by liquid epilim) was initially prescribed for that as well, but she wants me to stop taking it (probably because it could be contributing to my very low blood counts — my platelets count is about 100 only).

 

EPILIM WITHDRAWAl? I could stop the (fairly low dose of) epilim, but I'm reluctant to do so before recovering from my benzo withdrawal symptoms because: i) it may be helping control my bipolar disorder (at a critical time); ii) it's probably helping my sleep a little; and iii) a reduction could upset my nervous system even more. 

 

LookupJ, this is a book we recommend to members:

 

Anatomy of an Epidemic

 

Here's the book trailer: 

 

Robert Whitaker, author Anatomy of an Epidemic video (11 minutes)

 

You're putting drugs into your body that have profound consequences long term. Please take the time to read this book. It's extremely well researched. And then ask yourself if you really feel you have a "mental illness" or if you feel that you had a crisis state, ended up drugged, and now are dealing with the effects of the drugs. Historically, these "mental illnesses" were not life-long conditions. Please also see:

 

Long-term Evidence We Can’t Overlook Anymore: Anti-Depressant Outcomes

 

[Altostrata]

Hello, @LookupJ

 

On 11/29/2022 at 6:56 AM, LookupJ said:

MEDICATION TIMES

Gabapentin:                8am (300mg); 3pm (200mg); 10pm (300mg)

Diazepam 1.25mg       9am

Diazepam 4mg            9pm    

Quetiapine 550mg      9.30pm

Epilim 4ml                    9.30pm

Amitriptyline 10mg     9.30pm

Multivitamin & mineral tablet    5pm

 

SLEEPY ?

 Despite my severe insomnia and medication (3 hours last night), I have never felt 'sleepy' since the start of  "benzo withdrawal No 1" in 2019.  For example, I never yawn.

 

SYMPTOMS WORSEN OVER THE DAY

My symptoms are now hell from the morning, but have always progressively worsened over the day. 

 

 

Quite often, when someone is grossly overmedicated as you are, and symptoms get worse as the day and dosing progress, it becomes more likely that the symptoms are due to the drugs, either via interactions, adverse effects, or paradoxical reactions.

 

Paradoxical reactions arise from trying to overpower the nervous system with "brakes" such as diazepam, gabapentin, quetiapine, Epilim (valproate), and amitriptyline. Rather than the expected calming effect, the nervous system rebels at being smothered.

 

Your drug interaction report, which @manymoretodays very kindly did for you, is fairly explicit about the "Central nervous system- and/or respiratory-depressant effects" of your drug combination.

 

It's also fairly likely that your sleeplessness is due to the combination of drugs you take for sleep at night, i.e. diazepam. quetiapine, Epilim, and amitriptyline. More is not better. The insomnia is a paradoxical reaction.

 

If I understand you correctly, your GP and psychiatrist collaborate in concocting your drug cocktail? Have you discussed minimizing your drug burden with your psychiatrist? Since you have access to a specialist consultant, why have you sought peer support?

 

[manymoretodays]

Hey there LookupJ,

How are you doing?

Are you conferring with the clinic that Ian Singleton was at?  The Bristol tranquilizer project?  I am glad of that, that you can talk with people locally and get support too.

 

And I see, in answer to Shep's question this:

 

On 11/29/2022 at 4:56 AM, LookupJ said:

Epilim 4ml (equivalent to 160mg Depakote) i

 

I understand on not wanting to taper more than one drug at a time.  I know I gave you the link on tapering multiple drugs above, and here is an additional topic too, that may help up the road/in a little while, depending on what you decide to do.

Taper more than one drug at a time?

Do take a good look at the tapering multiple drugs topic again too, or get a feel for some of that information.  I mean ultimately, I often feel like my job here is to help you learn, and empower yourself, and then take over deciding and planning, and working your way to safer drugging, or all the way off.  It can take time..... I know.

What did you think about the links Shep shared, around your diagnosis?

It stands out, even from what little we know, or you have been able to share........that your drugs are your main problem now.  And man, we see that so often times here.

And oooh, I hate to see you so hyperfocused on the benzo, benzo, benzo Valium now.......when you have such cocktail going now, and I do so hope you can get some NOTES done and posted and then value the input given here too.  Take it in.

It sounds so brutal, what you think you need to do, with your benzo, and what you feel you must tolerate.

 

I mean, all of your other drugs, as well should, ideally be tapered, not just rapidly reduced and then taken off.  I appreciate all the information you offered, and sharing other input, as to how to get you to a better place.   And good reason on reducing the Epilim then, if your platelets are down.  I mean, yeah, that might be a reason to go quicker.   Is that same doctor paying attention to your present quality of life?  Is it one doctor prescribing all this?  It's so saddening to me, that you feel you must stoically suffer on, and get off the benzo.

 

Anyway.  NOTES will help so much, if you want further input from us.  Do look at what Alto had to say above too.  And keep going.......on reducing this drug burden of yours.  Please do.  Whether here or elsewhere. 

 

Okay, hope to hear from you soon.  And did see where you wanted to just HOLD, hold, hold at 5.25 mg of Valium for the next couple of months.  Meantime you could be planning ahead, and learning, reading as much as your present sensorium allows.

Keep looking up in anycase.  It's no doubt been real tough for you.  Wishing you healing, peace, comfort.

 

Best.  L, P, H, and G,

mmt