Diazepam, agoraphobia and the plan to taper...

Posted , 5 users are following.

I have been on diazepam for 17 years, current dose is 20mg per day.

Just over 3 months ago I felt like I was going into withdrawal despite taking my usual dose, doc said not possible, researched and found out it is!

The worst part for me is that my agoraphobia has gotten so bad, before diazepam I was not agoraphobic,about 5 years in I reached the stage where I could only go out with hubby and only to certain places.

The past 3 months however have been something else! I feel awful everywhere and even with hubby there, nowhere is okay anymore and it's not just panic attacks, it's feeling scared and overwhelmed for no reason at all.

Now I had planned to taper soon, just want to get past my youngest child's birthday first which is only a few days away so not long now.

I know everyone has a different experience in withdrawal but should I prepare for the agoraphobia to worsen? It's so bad now that I force myself out and through the awful feelings but I can't do half as much as I could a few month ago.

So when I do start to actually withdraw I assume that will get harder, I read how some people recover from agoraphobia after stopping benzos but that is after the withdrawal process is completed.

It's going to take a long time to complete my taper, I intend to go slow so whilst I go through it I think the agoraphobia will worsen, of course this will be awful but it's not great now so if it worsens is that all normal and part of the road to eventual recovery?

Thanks x

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11 Replies

  • Posted

    I would try not to make any assumptions, as each person is different and so withdrawal experiences are different.  Worrying about what ifs just makes things worse!  

    I've read of tapering off when in tolerance withdrawal actually making people feel BETTER!  Of course, this is a SLOW taper, no more than 10% per four weeks.  If you feel withdrawal worsening at 10%, you can break it down to 5% every two to three weeks.  Keep notes on paper of your daily symptom pattern relative to cuts so that you can see when WD will raise up, how long it lasts before settling down and therefore allow stability for a week or so before the challenge of another cut.

    I'm not tapering a benzo, but mirtazapine and Effexor, focusing on the mirt for now.  I found 10% cuts caused enough WD anxiety as to be uncomfortable, so went to 5% every two weeks, and that was very comfortable. 

    Also, throw away the callendar and only cut when you are comfortable.  The idea of the slow taper is that you won't be suffering along the way, and hopefully the nervous system will have done most of the readjustment along the way such that when you finally come off you won't go into major withdrawal.

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    • Posted

      Thank you Betsy, it's a scary time and I'm trying not to think too much about the possibilities but it's hard at times.

      I do fear all of the withdrawal symptoms but the agoraphobia worries me, I have read that benzos can cause it, I have also read that withdrawal can cause or worsen it but that many people once healed overcome it.

      It's my worst problem at the moment so I suppose I am in a sense trying to reassure myself that if it does worsen during my taper there is hope that it will improve as I heal.

      Good idea about throwing out the calendar, I need this to be slow and as painless as it possibly can be and wont want to be putting pressure on myself to go at a certain pace, I have read many comments from people who say you must listen to your body as you go and that makes a lot of sense, making notes and listening to my body as I slowly taper seems the best way forward with this.

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    • Posted

      You can do this, BellaLuna - you KNOW it will be healthier for you to come off, just going so slowly as to not disrupt the apple cart.  My taper has been going very smoothly.  The only trouble I've run into is when I switched to making my own mirt liquid. I made too big of a batch (mistake number one), switched directly to the liquid from dry (#2, do a gradual cross over from dry to liquid!) and 3) tried to cut a little at the same time!  I'm back on even footing. 

      Some would say it's malarky, but I have also employed a homeopath, and when I was having some anxiety related to all of this she put me on a remedy that seems to take away the anxiety.  I'm to use it as needed and if it quits working then we will go to a stronger version.

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  • Posted

    Betsy is giving great advice,I am having the same problem. I plan to start a slow taper but my Dr. insisted that diazepam does not come in 2 mg doses which I know to be a lie she even looked it up in my presence and said no take the 10mg as needed but now I am dependent and can not do that.I had switched from xanax to diazepam in order to reduce via Ashton.So what amess I have.
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  • Posted

    BellaLuna,

    I too suffer Agoraphobia.  It was mild and occasional 6 years ago (when I was on Xanax), then 2 years ago got worse (still on Xanax) and now after a rapid taper and switch to Diazapam, I can barely leave my room.  I feel anxious before going out.  & then so guilty over disapointing friends and family. Overwhelmed when I am there, sometimes to the point of panic attacks.  I no longer believe everything that comes out of a psychiatrist's mouth.  But. . . a psychiatrist told me a few months ago to write down everything that triggered my agoraphobia from the smallest to the largest.  like from getting the mail to going to a new public place.  Then starting with the smallest, force myself to do it everyday until it no longer triggered me and move onto the next thing.  I gave up after 2 months on the same thing, so I am not sure it would work for you.  The DSM V talks about virtual reality programs helping people who can't go out.  I think exposure, even minimal is the key.  My advice is to keep trying when you feel good.  Even if it is just a few moments.   Last weekend I went to a neighborhood church flea market with my son in sunglasses and a hoodie for 20 minutes, then to the new restaurant he works at for lunch.  It was a really long line and I began to feel the vibrations of everyone talking and the music bombarding me, the room swirled and I felt exposed & threatened.  He had to walk me to the car in tears.  We had take out, watched a movie and the day was not a total disaster.  It wasn't perfect But it was something.  Anyway, my point is that you are not alone in this and keep trying, even just a little every now and then when you feel like you can take pushing yourself.  

    OH, and I think I read here somewhere that Diazapam comes in liquid form so you can do a 10% taper.  I am sorry, it may have been somewhere else or another drug.  My brain doesn't retain as much as it used to.  and if I am remembering correctly the liquid may only be offered in the UK.  It does come in a 5 mg tab in the US.  I am taking it.

    Hang on.  I hear it gets better.

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    • Posted

      I aso have agoraphobia but can go to a limited number of places preferably those with shopping carts as I have afear of freezing up in open spaces.I was on xanax for three years have switched to diazepam 10mg for the switch am also changing doctors I need the 2mg tabs.so I can reduce 5% Iam in no hurry,well yes I would like to stop today but since that is not possible slow is the way to go.The diazepam gives me chills the next day I take it for sleep. I have noticed a heavy sluggesh feeling the next day. I keep good records dating back over a year Cheer up I had an acupuncture appointment the other day my daughter was supposed to take me but had something come up and couldn't well guess what I went alone and did fine had some anxiety but managed.Well i'll tell you it felt great. I have an appointment with a new DR. tuesday pray I can do the same so nothing is impossible I just fight every day.I find this affliction to be almost lmpossible for those who do not suffer to understand .So I hide it very well if you met me you would never guess the sheer agony in my life.The last thing we need is pity. If you would like to private message me feel free.I am a very good listener.  
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    • Posted

      You hit the nail on the head about people not understanding.  Just this week my own brother told me to get a job.  I can't leave my  bedroom most of the time, my shrink doesn't think I could hold down a job at McDonalds, how a, I going to function in a workplace for 8 hours?  I don't want pity, but I do want understanding especially from my family.  I hope your appt. goes well on Tues.  Ask about the liquid form?
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    • Posted

      I am in the US don't know if it is available here Ihave a part time job 15 hrs a week.I struggle to go and most times dread it sometimes it is ok others not at all but I stick it out because if I don't this monster will take over my life. I go to the same stores because I am comfortable I actually got brave and went to home depot.after a few minutes i got my paint chips and left,but to me it was a victory I have promised myself that I will expand the places I go.I really don't want to go out but I know I must summon the courage and face my demons.You see I make a point of appearing normal I never share much not even with my family and certainly not my co workers I appear happy and approachable. This way there are no explanations and no PITY from those who could not possibly understand.Everyone has their way to deal this is mine. 
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    • Posted

      You sound like me 2 years ago.  Luckily I had been with the NFP for 15 years and had so much vacation and flexibility that no one noticed.   I was in development and event planning, so I had to ask for $ from perfect strangers, meet them at restaurants for lunch and swallow my fear the whole time.  I had to look all glam or business-like at events while I worked the room.  I had exactly 30 seconds of small talk and then I'd rush off with an excuse that I had to check on something.   No one had a clue that I would go home and tape the blinds shut on bad days.  Good for you for facing your fears.  Eventually, wearing the mask was too hard, too exhausting for me.  But we are all different.  I gave up, and now I am in this place.  Don't give up and whatever you do don't go backwards on your tapering off the benzos.  I wish you strength and courage.  
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    • Posted

      Yes this hiding it is exhausting like a full time job I just keep pushing forward determined not to give up although the last few months have been increasingly difficult.I just keep telling myself I will not let this win.I wish you the same.
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