Need help coming off

Reason for joining - to get support

Currently on 10mg diazepam awaiting withdrawal

Also on 75mg quetiapine and 30mg mirtazapine

On diazepam 9 months

From Derry Northern Ireland

Hello BrainAG, welcome to BenzoBuddies,

 

We're glad you've joined us, are you currently experiencing symptoms from your use of Diazepam, are you working with a doctor for your taper, what size pills do you have?  We typically suggest reducing your dose by about 5-10% every couple of weeks but a symptom based taper is actually better because it may keep you functional.

 

I'll provide some links to help you navigate the forum but please let us know how we can help you.

 

Pamster

 

Colorado Consortium Benzodiazepine Deprescribing Guidelines

 

Planning Your Withdrawal (Taper)

 

Withdrawal Support (during your taper)

 

Chapter 3 Ashton manual, list of symptoms

Hi Pamster,

 

Apologies for only replying now. Let’s just say that symptoms have been keeping me preoccupied for quite some time. I haven’t started tapering but plan to do so soon, with a new GP I’m working with. I realised something was very wrong about 8 months ago and have just had symptom after symptom since. Started with panic attacks / tachycardia. Then referred to Primary Care who referred me initially to a crisis team. After daily visits by psychiatric nurses they tried to section me under the mental health order of Northern Ireland. I found out this was because I was hesitant about taking quetiapine and the psych thought I was storing meds to end my life (?!?!). As a drug-affected (and therefore) hypochondriac I thought aren’t these 2 things opposed? Anyway I had no option but to start taking quetiapine (otherwise I would get sectioned).

 

Since then it’s been one horrible symptom after another. I was already on mirtazapine at time of taking diazepam. This was due to a period whereby I had returned from Manchester (I was a public health manager - non clinical) due to a nervous breakdown (was taken off venlafaxine 150mg over 3 days by a GP in Manchester!). My GP in Ireland prescribed me 15mg PRN diazepam plus 7.5mg zopiclone around March last year so I could return to my job in Manchester. I went back for 2 weeks and felt “something is really not right despite the drugs and unfortunately at that point had to resign from a 14 year career. I had no idea it was the drugs. PRN was never explained to me, nor was the dangers (as seems to be the global experience). Unfortunately despite my harm reduction experience I’d never worked specifically with benzos.

 

On returning home from Manchester (second time after resigning) I left my bag in a cafe in Scotland and basically unintentionally C/Td. After 2 weeks at home I started having panic attacks, went back to GP who just reinstated diazepam. I was taking for about a month until another GP raised concern and overnight I was referred to primary care as above. Since then they’ve been trying to stabilise me (apparently) but basically I’ve just been discharged from psych services to GP.

 

The last 6 months particularly have been hell. As I say now working with a GP to investigate symptoms before commencing taper.

 

I have:

Unsteadiness / rocky boat dizziness

Tinnitus

Tracers in vision

Blurred vision

DP/DR

Tachycardia (particularly after quetiapine)

Pre-diabetic

Slight anaemia

One liver enzyme raised (although they say ok)

Migraines - every few weeks for a few days

Pins and needles in various places (comes and goes)

Constant fight/flight/freeze

Constantly think I’m going to have heart attack

Agoraphobic

Swollen abdomen and all the gastric stuff (although just got a qfit and calprotectin -ve result today so hopefully that rules out cancer /IBD/inflammation)

 

This was from someone who was so active and had such a successful career. Even when I first came back after nervous breakdown I was doing regular 3 hour cycles and running 10ks.

 

I’m so scared as I’m having so many side effects and I haven’t even started a taper. Just don’t think I’ll survive.

 

Anyway that’s where I’m up to. Life changing and hellish. Depressed, lost and without hope.

 

Thank you for your kind welcome and work you do and fingers crossed I will see life again

 

Any advice greatly appreciated!

 

Best wishes,

 

Brian .

 

 

I should also say once I realised after speaking to the other GP who raised concern about diazepam script I immediately stuck at 10mg per day as I’d been taking anything from 5 to 15 prior and thought I need to go middle of road here. I’ve been on 10 mg for about 9 months I think.

I’m glad you’ve gotten on a stable dose but my goodness, you’ve been through so much and lost so much as well. 

 

Your symptoms are right out of the Ashton manual, everything you’re feeling is being caused by the Diazepam and I hope you’re ready to say goodbye to it so you can get your life back, free of pain and fear.

 

Tell us how we can help you.

Hi again Pamster,

 

Thanks you so much for your speedy reply.So much appreciated!

 

It is reassuring to know that my symptoms are Ashton specific. I have done  so much research (it’s my background career-wise) so I feel reasonably well informed on a number of things.

 

I think based on my current sxs I’ll proceed on a go slow. I was thinking 0.5 mg to start and try and find my tolerance (although I’ve certainly reached tolerance now at 10mg).

 

One question I have is based on current sxs at this maintained dose, am I likely to have an horrific ride from this point (in your experience)?

 

Also is it safe to proceed with quetiapine?

 

Finally I’ve felt so much more wave than window since my belly started bulging 3 weeks ago. Could this possibly be affecting absorption of diazepam?

 

These are questions you may not be able to answer, but just putting them out there to see if you or anyone else here has any experience / understanding.

 

Thanks so much in advance!

 

BW

 

Brian

 

 

Slow is good but I wouldn’t change any other medications at this time.  Our central nervous system is very sensitive while we’re going through this and adding or subtracting anything new can spell trouble.

 

We call the belly problems you’re dealing with benzo belly, it’s kind of a catch all for digestive issues.  I’ve never heard anyone mention this causing a problem with absorption, what you’re feeling is more likely tolerance to your dose.

 

Given how bad you’ve felt for so long, I believe starting your taper will be a relief and you may actually feel a bit better, at least this is what some members have experienced.  You’re right, I can’t answer all of your questions because I didn’t taper but if you’ll post your questions on Withdrawal Support (during your taper) board you’ll get more replies, not many members hang out on the introductions board, this is mostly for welcoming new members.

Thanks Pamster,

 

As Ernest Hemingway said “ We are all broken. That's how the light gets in”. Thanks for being the light for me this evening.

 

BW

 

Brian

Hi Brian, So sorry you have had to endure so much with these medications.

 

How long have you been taking the Quetiapine? I was put on this for sleep by more uninformed doctors and successfully tapered during acute withdrawal and I am now SLOWLY SLOWLY tapering the last amount of it using compounded doses.

 

I got the accelerated heartbeat from it along with horrific nightmares, intrusive thoughts, and SI's.

Hi Rebecca,

 

Thanks so much for getting in touch. I hope you are having a good day.

 

I’ve been on Quetiapine for about 6 months. It’s a horrible drug. Funnily I have a friend who is a clinical psychologist (Dr)  for a crisis team, and she said most of her work is therapy for harms caused by psychiatrists. I said to my new GP that I considered psychiatry quackery and she replied: I don’t disagree with you there.

 

I don’t know if I should come of it pre-taper. I literally had no option. Either take it or be sectioned. Crazy!

 

How are you now?

Also, what is an SI?

I have been better, to say the least. I have been off Ativan for 4.5 months. I never expected it could take this much time to recover, let alone that I might have around 50 PAWS symptoms. Thankfully, many of those have dropped off. Others are more persistent and are taking their good ole time. I am slowly healing, but that could change in a moment, so I am hopeful that moment will come sooner rather than later.

 

I hope your recovery is smooth and that you start to experience relief.

 

 

Also, what is an SI?

 

Suicidal ideation.

A term I really didn't need in my vocabulary...Unfortunately, one of many terms now that I would rather not have in my vocabulary...

Hi Rebecca,

 

Thank you!

 

I’m sincerely hoping your recovery continues and you are feeling much more healed very soon!

 

Yes, I totally agree with not wanting these terminologies.

 

I spoke to my GP today who wanted me to go from 10mg per day diazepam to 7.5mg. I said absolutely not. She said she has de-prescribed lots of patients from benzos. This makes me think she isn’t benzo-wise. We negotiated 1 mg per 1 to 2 weeks. I wanted to start at 0.5, but she said she wouldn’t support that.

 

Anyways, thanks again!

 

Brian

I seriously don’t understand.  You went to your doctor, you told her you wanted to taper from this medication so you’re obviously not drug seeking yet she wants to control your taper.  Each and every person who attempts to taper off of these drugs will have a unique experience, your doctor saying she’s de-prescribed a number of patients but still wants to lump you in with the others tells me you’re right, she isn’t benzo wise. Sorry, I get frustrated. 

I agree with Pamster. Can you find another doctor?

Hi Rebecca,

 

My family are insisting I start tomorrow. Haven’t even informed my GP yet. V scared and like you, querying quetiapine within all this madness.

 

Really hope you are finding some relief🤗

What size are your pills, do you need help?

Hi Pamster,

 

I was forced into reducing today. Had some 2mg so have a supply equivalent to 4mg AM and 5mg PM

 

I’m so apprehensive.

 

Thanks

 

Brian

I’m sorry Brian, I understand the apprehension, so you’ve reduced by 1mg?  How long do you plan to hold it?

Hi Pamster,

 

Not sure if timescale. 2 weeks I’m thinking. Feeling pretty miserable already. Also very concerned about  quetiapine and impact this will have (sorry to repeat). I’ve been significantly restless and worrying about akathisia and hand tremors.

 

Thanks,

 

Brian

Will you have control over when you reduce again?  It’s a good idea to track your symptoms and reductions so you can use this information to determine your next reductions.

 

I’m nervous about that drug too, I’m nervous about a lot of them because I’ve read so many members have problems.  The trouble with being nervous is that creates stress and stress creates increased symptom severity, a viscous circle.