UK Clarity Project -- "An End to the Hell of Sleeping Pill Addiction"

[[Fl...]]

This recent article discusses some of the issues that we've been discussing here re: addiction vs. physical dependence:

 

http://anp.sagepub.com/content/early/2016/04/15/0004867416644980.extract

 

The author explains clearly what many of us have stated before -- that is, that "addiction" denotes "compulsive drug-seeking behaviour", which is different from the "pharmacological dependence" that is caused by "the normal physiological adaptation to the presence of a substance that affects the central nervous system..."

 

Unfortunately it is also a "pro benzo" article that basically suggests that benzos shouldn't be withheld from people who need them because they "only" cause dependence (which is a natural response to the presence of the drug).

[[La...]]

I agree, FloridaGuy. Disappointing article, in that sense, but the delineation between addiction and physical dependence is an important one. There's so much focus on addiction and not enough understanding of the fact that these meds cause a change in the CNS. For this doctor, that doesn't seem to be problematic. For those of us who don't wish to have compromised central nervous systems, it's obviously a big problem.

 

The best example I can offer is dizziness, which is the main symptom I'm dealing with. For me, it started while I was still on the medication because -- as I later found out -- benzos are known as "vestibular suppressants" in the medical literature. But no one figured it out right away. I can tell you from experience that once your vestibular system has become compromised, it can take a very long time for it to normalize. I'm still waiting. And wobbling. And debilitated.

 

PREVENTION is the key. These meds are NOT meant for long-term use. Bottom line.

[[Lo...]]

Thanks Lapis.

 

I will not be silent.  Last week, I started an in person meetup.com group for people coming off benzos and sleeping medications, we will meet mid February for the first time.  In the space of a few short days, I've had 25 people sign up for the group as members, 7 confirmed for the first meeting.  I am very clear it is a peer support group and that they need medical supervision for their tapers but the chance to meet others going through this experience, even once a month, would have been a godsend to me in my withdrawal.

 

I am strong enough now at 32 months to speak out, to reach out, to share my journey and perhaps help others.  I couldn't have done it a year ago.

 

I am lucky here as we have two good Daytox programs with lots of free help for people, one in Surrey and on in Vancouver proper.  So there is lots of "boots on the ground" help for people to get support and the group can just provide emotional support.  We also have BBs, and that can provide on-line support 24 x 7, it is amazing.

 

I've also been asked to potentially sit on a committee for our local health authority to provide patient insight to their programs and offerings.  I'm exploring doing this as I feel that it is critical I give back having gone through so much.

 

But I am old enough and wise enough and have had enough life experience under my belt to feel strongly tha I can speak out.  I have very little to lose and so much to gain.

 

Hi Ali, I have been reading some of your posts apart from the Zopiclone thread - excellent!!! Thanks so much. You and I have a lot in common interest wise.

 

I really admire the work you are doing and the start-up of the group. How did you contact people? I really wish there was something in the Toronto area and I might be interested in starting something here. You mentioned earlier to me that there might be someone just N of here also interested in starting a group? Please let me know contact info if person is still interested. I'd really like the support of meeting with others in the same boat and to help others in their journey.

 

Although Toronto is a huge city - 4th largest in N America, I don't think we have the support that you found in Vancouver.

 

I was waiting for a prescription at the pharmacy the other day - eye drops - and the woman ahead of me was getting zopiclone. I had to bite my tongue to not speak out and be warning her of the dangers!

[[Se...]]

Hi Loveslife!

 

Thank you so much for your kind words and for your PM.  I'll get in touch with the person who is also potentially interested in starting a Meetup.com group in the Toronto area and let her know your interest.  Hopefully she'll be in touch.

 

We've had 4 meetings so far and things are going well.  I started it in January but had been waiting to start it until I felt well enough.  I went to speak to the minister at the Vancouver Unitarian church in September, on my birthday.  My counsellor encouraged me to think about doing this and I'm so glad she did.  She said to me that so much of this journey was out of my control - the withdrawal symptoms for instance.  It was a way to start positively taking back some control in some small way and it did a great deal for my self confidence and to start me going in a small way, part of my "reentry plan" back to having a life again.

 

I lucked out, one of the church members was interested in coming to our group so, as a result, the fee for the room was waved.  Meetup charges a small fee every month now that my group has grown beyond 50 online members, I think it is abou $12.  I could pass the hat for donations but I decided to make it my contribution towards the group.  I usually make herbal tea and bring some fruit and sometimes make some cookies.  This month I brough a wonderful chinese fruit cake (yum yum) to celebrate my 3 year anniversary of coming off the z-drug.

 

We usually average about 8 to 10 people.  I have some common sense rules that I read at the beginning for the benefit of any newcomers but they are straight forward.  Then we do a round table introduction of ourselves and our situation in broad brush strokes and I try to get everyone to tell the group one fun thing about themselves to break the ice.  We then do a short education component, I try to run a video about benzos or an audio for about 15 to 20 minutes.  I usually also bring some handouts, from articles to things I've found to help in withdrawal.  Then we take the bulk of the 2 hours and do question and answers and go around to everyone to let them talk for 5 minutes to make sure everyone is heard and questions are answered.

 

We meet once a month from 7 to 9 pm.  The meetup.com software handles all the communication with the group, including automated reminders.  They RSVP which allows me to print out an attendance sheet.  No one has to use their real names, they can use first name only or a pseudonym and only those who are members of the group can see the details about our meeting or who is in the group.  I use the next meeting message board to post links in between meetings and try to find articles and inspirational stories and links for people.  The software also enables members to "email" back and forth without the need for email addresses or any personal information.  Anonymity can be preserved.  All in all, it is a great software for this sort of thing and it also "advertises" the group to others in the area.  We've grown quickly to over 50 members over the few months we've been meeting.

 

I have so much more information to share but I think I'm going to do up a google document as a way to make it accessible to anyone interested.  I modelled my group on Laura Delano's Boston "Coming Off Psychiatric Drugs" group although mine is called "Coming Off Benzodiazepines and/or Sleeping Meds" group.  If you google Vancouver and the group name and meetup.com, you'll find it.  You can join using a pseudonym and see what I've posted if you click on the past meetings or the current one.

 

Hope this helps!

 

 

Ali

[[Lo...]]

Many thanks, SS, for all the information. I hope to hear from the other person in the Toronto are that is interested in starting a Meetup group.

 

You have 50+ online members? Wow. I guess they benefit from what you send out each month and perhaps they come on a hit and miss basis? A turnout of 8 - 10 sounds as large as is manageable. I started a widows group and 10 is about max for good communication it seems.

 

I think this is a project for the fall but one that needs advanced planning. Good idea to make this into a Google document.

 

BTW it sounds like you have a great counsellor. How did you go about finding her? She has experience with benzo withdrawal I think you said. May I ask cost?

 

LL

[[Se...]]

Many thanks, SS, for all the information. I hope to hear from the other person in the Toronto are that is interested in starting a Meetup group.

 

You have 50+ online members? Wow. I guess they benefit from what you send out each month and perhaps they come on a hit and miss basis? A turnout of 8 - 10 sounds as large as is manageable. I started a widows group and 10 is about max for good communication it seems.

 

I think this is a project for the fall but one that needs advanced planning. Good idea to make this into a Google document.

 

BTW it sounds like you have a great counsellor. How did you go about finding her? She has experience with benzo withdrawal I think you said. May I ask cost?

 

LL

 

I actually lucked out with finding my counsellor through Huffington Post of all things.  Her clinical supervisor has a blog that has been picked up by Huffington Post Canada a few times and I remembered reading this counsellor's blog and looking into her background and finding that she was on benzos at some point due to her IBD, Chrohn's I think.  To make a long story short, I emailed her and found out that she specializes in working with family members who have someone addicted in their family but when I told her my story, she suggested a counsellor who she was supervising who practices here in Vancouver and who offered a sliding scale.  I pay $80 for a session and usually go about once a month with homework in between.  As I don't have extended medical coverage and am paying out of pocket, this can get expensive but honestly it has been worth it 10xs over as last fall I really felt traumatized by the sheer length of time it was taking for me to get well.  My counsellor was the one who encouraged me to start the group as a way to start taking back a bit of control now that I'm well enough to reliably show up in my life and meet commitments regardless of how I am doing - I could have not done this a year ago but this is a measure of how far I've come.

 

There must be counsellors in Toronto who have some experience in this area.  I remember years ago going to see Dr. Zoltan Rona (he was terrific), a GP who specialized in functional medicine and remember there was a terrific psychiatrist who used to practice with him.  I'm not sure if he is still practising though and what his stance on benzos/z-drugs is.  Dr. Stephen Melemis is a benzo wise doctor in Toronto, he has a good website.  They must be out there, I'm thinking.  Have you tried posting a question on the "Chewing the Fat" part of the forum here and asking other Torontonians for suggestions?

 

A google document is the way to go, I think.  I have to get on this as it would be valuable for me to post some of the materials that I'm handing out each session along with links to any videos and resources.

 

One of the things I have come to realize is that it is really important to have a way to support people going through this process beyond the group.  We are lucky here in Vancouver as there are a few really good physicians who are helping people - one at UBC and one at Surrey Memorial Hospital at the Daytox there who also does a day at the Vancouver Daytox unit.  These doctors are benzo-wise and anyone who comes to my group is told about them.  It takes the pressure off me and the group to know that they are working with a physician who understands about tapering and withdrawal.  The group is meant to be a resource for emotional support, not to oversee tapers so it is important that anyone starting a group know where these doctors are in their communities to ensure that people have access to proper medical supervision.  I'd also say that identifying some counsellors in your community is also key - I have a list of 3 counsellors that I know about, one from Surrey Memorial's Daytox unit, my own counsellor and one other that I know about, and each of these counsellors has experience with benzodiazepine withdrawal.  So knowing where to point people when they need more support than just the group is key to doing this in a safe and sane way.  I couldn't function if I was trying to provide ongoing support to the 6 to 10 people who turn out.  I do the odd phone call with people but I'm not on the hook for regular emotional support, they have help through their doctors and counsellors.  Surrey Memorial Daytox has a wonderful and free program that I've written about extensively on these boards - anyone can self refer and do the 6 week program up to 4 times a year, it includes free auricular group acupuncture along with yoga, qi gong, mindfulness meditation and lots and lots of psycho education.

 

So you see, I'm not alone trying to tackle this.  There are resources here to help people, beyond the group.  This means that practically speaking, my role is to host the group once a month and to do some posts in between.  It takes the pressure off and I'm not responsible for how people's tapers are going - they have help for that, including these boards.  It makes it doable from my perspective.

 

 

Ali

[[Lo...]]

Wow! What great information - you have given to others so much here and in your group!

 

Very interesting about finding your counsellor through Huffington Post! Like you I would not have insurance to cover counselling. I pay for other things like physio and massage. Not sure I want to fork out for counselling. Will see.

 

And so far I have not found much in the way of resources here. I did call Dr Melemis' office at one point but he is no longer doing any benzo withdrawal. Just the "hard" drugs.

 

I do know of Dr Zoltan Rona. Its hard to say what he might know. However, I do have a good naturopath but so far, I have not had much of a conversation on the subject with her. I don't go often as it is expensive and when I do go there are lots of other things to discuss.

 

I am fortunate to have an excellent family doctor who is very integrative. I need to get in and see him on this issue alone. Last time I saw him I was very ill with a deep chest cough which was the focus of the visit of course. So I don't really know what he might suggest.

 

It sounds like Vancouver is very progressive re benzo withdrawal. There may be more here than I realize. Meanwhile I am doing OK although sleep was very short last night. I've been pushing the taper and need to slow down! This is hard as I really don't feel good after I pop the tablet in my mouth. Within minutes I am feeling anxious and nervous. It does somehow help me go to sleep however.

 

I have been splitting the dose and now I don't wake for the second one until 6 (5 today) and by then I am already into high cortisol and it does nothing for me. I take it anyway as I don't want to drop dose too quickly. Were you doing a divided dose?

 

Anyway, sorry to burden you with these details. Comparatively speaking I'm doing well. Its just a difficult process and I wish it were over!

 

Thanks for your ongoing support.  LL

 

[[Se...]]

The problem, LL, is that even the benzo wise doctors know very little about the z-drugs.  We collectively probably have more experience here on these boards on our z-drug thread than they do and we are struggling to figure this out, one unfortunate person at a time.

 

Most people will be able to taper I think without real issue if they go slowly.  Some of us have problems already and are in tolerance withdrawal while on the drugs - I certainly was.  I think that this probably means we are in for a rougher ride.  I know my 82 year old mother tapered over 10 months - the same amount of time I tapered - and had no issues.  She did not suffer from interdose withdrawal or tolerance withdrawal while on the z-drug though, unlike me.  My best friend came off 15 mg of zopiclone for well over 20 years over an 18 month taper.  She had some tolerance withdrawal before her taper in the sense that the zopiclone wasn't working for sleep anymore, not really.  She had a relatively straight forward taper but towards the end of her taper her anxiety and depression jumped up significantly and now that she is off for the past 4 or 5 months, her anxiety has been intense.  It is getting better and she knows about post acute withdrawal in the first year to 18 months so she is just trying to relax and ride it out.  She did start using Trazodone recently for sleep though and it is helping her to get 5 hours a night as opposed to 2 to 3.

 

I was splitting my dose for the last 2 years on the drug because of tolerance withdrawal and because I was sleeping for only a few hours then waking up and being awake for the rest of the night so I started to divide the dose and take my 2nd dose when I awoke.  When I started to taper, I just went to one dose at bedtime and I stuck to this regardless of how I felt.  But honestly, I was so sick anyway, it really didn't matter.  Every day I would start to heat up in cycles towards the end of the day, feeling very flu like, it would intensify towards the next dose.  Very ill - think jet lag crossed with intense hangover from hell crossed with flu.  Awful.  When I jumped 3 years ago, this "benzo flu" set in after about a month and was continuous for the next 15 months.  Just got sicker and sicker until I went to our local Daytox and had a 2nd round of auricular acupuncture 4 times a week for 6 weeks.

 

We have a lot of help here in Vancouver but I want to start agitating for more help, along the lines of the Clarity Project in the UK.  My recent experience with the group highlights the need for more support for people trying to come off or in withdrawal.  This can be very isolating and some of my group are shockingly ill.  Thank god we have a couple of doctors who are very benzo wise.

 

I really benefited from the bio-identical hormones I was put on to help my adrenal exhaustion/fatigue along with the adrenal supplements (vitamins).  Although my withdrawal was very tough with physical symptoms, I didn't have to contend with depression or anxiety and I attribute that to the bio-identical hormones.  I think they saved my life.

 

So much to learn!

 

 

Ali

[[Lo...]]

The problem, LL, is that even the benzo wise doctors know very little about the z-drugs.  We collectively probably have more experience here on these boards on our z-drug thread than they do and we are struggling to figure this out, one unfortunate person at a time.

Yes, I think that is why I haven't asked more of my doctor and naturopath. I am not at all sure that they will know more than I do! But I will ask and hopefully will be pleasantly surprised. I will see my doc middle of June unless I need to make another appointment sooner.

 

Most people will be able to taper I think without real issue if they go slowly. 

 

I'm assuming that I will be in that group that tapers without big problems. I'm a little concerned that my reading on this group will have a negative effect on me.

 

She did start using Trazodone recently for sleep though and it is helping her to get 5 hours a night as opposed to 2 to 3.

I am keeping that in mind although I'd really rather not take another drug!

 

I was splitting my dose for the last 2 years on the drug because of tolerance withdrawal and because I was sleeping for only a few hours then waking up and being awake for the rest of the night so I started to divide the dose and take my 2nd dose when I awoke.  When I started to taper, I just went to one dose at bedtime and I stuck to this regardless of how I felt. 

Yes, you were very sick! I'm not. I am just planning my strategy re the divided dose. I'll try to be wise and hold for a few days until I get my nervous system settled down before moving on. I have to keep reminding myself that I have made a substantial reduction already! I've been influenced by the info on the Clarity project...people coming off Zopiclone in 12 - 20 weeks. Yes, I know my body will dictate the rate I can manage!

 

I really benefited from the bio-identical hormones I was put on to help my adrenal exhaustion/fatigue along with the adrenal supplements (vitamins).  Although my withdrawal was very tough with physical symptoms, I didn't have to contend with depression or anxiety and I attribute that to the bio-identical hormones.  I think they saved my life.

 

So much to learn!

I do think that the hormones can be very helpful. Not for me however as I've had breast cancer.

 

I am doing alright. Mood OK so far. Yes, so much to learn!

 

Enjoy your long weekend!  LL