I have been an occasional poster (and regular reader) here since October 2005. I am just writing today hopefully to give others some encouragement that has been given to me endlessly since then.
My story is that I was put on 2mgs K and an anti-depressant in January 2005 as an experimental treatment for de-realisation (I was neither anxious nor depressed). At the time I asked the doctor if either were addictive - he told me that they rarely were but to be safe I should not stay on them longer than a year. So off I went. The drugs made no difference to the condition and so in September 2005 I decided to come off them. The doctor told me to come off the anti -depressant first which I did without problem. He then told me to come off the K 1mg per week which equalled 1 week of tapering and then off.
Well the usual story started after that. I started getting very painful shoulders, neck, back, upper arms, headaches, bladder urge and dizziness and was very anxious for no apparent reason. I asked the doctor and he said "if it were the K (which was doubtful) that these symptoms would pass in 3-4 weeks max". They didn't and by then I felt fairly sure that coming off the K was the problem.
Thankfully I then found this God-send of a site and was gently advised I may wish to consider re-instating and tapering properly. I almost threw up when I realised I was on the same type of drug as Valium and what was worse that I had been taking the equivalent of 40mgs for the past 9 months - I had no idea and was stunned, confused, angry and scared senseless.
Anyhow I eventually decided after 6 weeks of feeling rubbish to re-instate on to 40 mgs V which I stuck on for about 3 weeks. On December 1st 2005 I began my taper. I got down to 20mgs by February 2006, 10mgs by May 2006, 5mgs by September 2006, 2.5mgs by December 2006 and yesterday water titrated off my last dose - 0.033mgs V. Of course it's still very early days but I can say that as I finished my last dose I had very few symptoms - a little dizziness and if I push myself physically I will get nasty headaches. What a difference compared to when I (unintentionally) cold turkeyed 18 months ago. Since I re-instated I have not had a single day off work either (although NOT because I am some sort of strong man but rather because through tapering slowly my symptoms, although often unpleasant, were much more toned down as compared to when I c/t.
Oscar Wilde said the worst vice is advice but I'll offer some anyway -based solely on my own experience:
1. Do not c/t - no matter what.
2. DO NOT C/T - NO MATTER WHAT - (this is not a typo!)
3. Patience is so difficult when going through this but is perhaps the most important thing. You want to be off so that you can start healing as the drugs made you ill. That's the irony though. In order to get better you have to rely on the drugs by reducing them slowly so your body can 'keep up' with the diminishing amount. Hard to get your head around this but crucial I think.
4. Keep a weekly diary. Every Wednesday for the past 18 months I have written 3 lines about my symptoms. It's amazing looking back - for example I felt better at 13mgs than I did when I was taking 19mgs. Better at 3mgs than I had at 6mgs. This is important as you can see, when you feel rubbish that you have felt that way before only to then start feeling better again later - at a lower dose. This proves that you are healing and is very encouraging when feeling low.
5. Seek encouragement from a friend, lover, and from this board but try not to overload your supporter - unless it is the good people here. We in this community know this pain etc where as there is a danger of overloading your supporter, who despite their best intentions can only ever be a sounding board.
6. Finally I would very strongly suggest water titration. I started this at 4mgs V and although I was not symptom free the rest of the way I WITHOUT DOUBT felt much better than when I was dry cutting. I know this from reading back my diary. If I were doing this again I would probably start at 10mgs V.
Lastly I want to thank two people in particular who have helped me so much for what seems like forever. Always they were encouraging, warm, compassionate, non-judgmental and affirming. Firstly Anthea who has helped and continues to help so many of us through this wretched journey - truly Anthea, you are the best. Secondly to the wonderful Ruth who has helped and guided me endlessly with my water titration and getting me off the final 4mgs - I can't thank you enough Ruth.
My benzo journey is not finished yet as I still have to get used to benzo free living and hopefully recover some more. But after what seems like forever on this journey I feel like I am now walking back up my garden path to a place called home where I feel happy and most of all healthy.
I am off to open some champagne which has been chilling for the past 2 hours. I will raise a glass to you all.
Thank you so much.
I forgot to mention about a great poem. I live in an English country village and found this in our church some 18 months ago before I started my taper. For all I know it's very famous already but either way it could have been written about this experience.
My Six Month Update
I thought I would give an update on how I am 6 months off.
In essence my story has been a mixture of good and bad. My last dose of valium after a 13 month taper was about 0.10mgs (using water titration). The week or two prior to coming off I was having fairly minor symptoms and so I felt pretty confident that I would be fine coming off such a small final dose. This was how I came to make the mistake of writing a success story only a day after I got off the drugs.
It was a mistake because 3 - 6 days after my final dose all of my symptoms flared right back up. I could hardly believe it but it was true. In my case this means daily headaches, shoulder pain, dizziness, bladder urge and anxiety and racing heart. To be honest I was absolutely gutted having spent 13 months tapering off 40mgs slowly (I had previously c/t off 2mgs K in September 2005) .
Since I got off 6 months ago I have continued to keep a weekly diary of symptoms and also a graph so I could actually see how things have changed or not. Currently I am a long way from being better and still have all the same symptoms (except the anxiety/racing heart which went after the first 6 - 8 weeks or so). However in spite of this I am slowly improving. The graph (which does not lie) shows that slowly things are getting better and I do mean slowly.
I have continued to hold down my job which is obviously good although I don't do much apart from work. I have noticed that over the past 2 months that I have started to get good'ish days. These aren't days where all the symptoms are gone (I haven't had a day like this yet) but are days where all the symptoms, although there, are turned down - especially the headaches - my goodness it's no fun having a headache every day for 6 months I can tell you.
So it's steady as she goes I guess. I can't say that I can see the light at the end of the tunnel yet but I have a little hope that around the corner I may be able to see a pin-prick of light in the distance. Hope is the fuel for this train I guess.
Keep pushing on
12 Month Update
Just thought I'd post a progress report as I completed my taper on the 7th March 2007 meaning today I have completed a whole year benzo free.
My taper lasted 15 months getting off 40mgs of Valuim (after having previously c/t off 2mgs Klonopin - before I found this group). On finishing my taper I felt pretty good but within a week this was lost and I had several unpleasant problems which I had experienced off and on through the taper. The first four months post-taper were the worst - I felt rough most of the time. In July 2007 I started getting a few good days, a few more in August and so on. By last month I was averaging about 80% of my days being fair, good or very good.
My symptoms are still here but without question are not as intense or as ever-present as in the first four months. I have been able to continue working throughout thankfully and this last fortnight have started playing tennis! This would have been laughably unthinkable just four or five months ago.
So to answer the question: am I totally recovered? - the answer would be no. However there is NO doubt that I am significantly better than I was and see myself improving every month or two.
As many have said before me; keep going. Do not give up. Like you dear reader I thought I would be that special case who never recovered. Well I wasn't and nor will you be. Lastly take my advice and track your recovery - keep a diary - I do a weekly one. I also note on the calendar good and bad days. On a bad day it really picks you up to see all the good days in the past AND how there are slowly more and more good days occurring.
One final point - recovery really is not linear - for example in the month of November 2007 I felt worse than I had in October!! - yet I was a month further away from the drugs. Then in December I had my best month up to that point. You are on a rollercoaster - up and down, up and down - just hold on.
18 Month Update
My progress over the past 6 months has been a bit different to how I had expected it to go. By March of this year (when I was one year off) I was having many days per month where I felt ok - not totally fine - but not too bad. I would say about 23/24 days per month on average. The other 6/7 days days per month I felt pretty rubbish. Since then what has changed is that although I still get about 4/5 days a month feeling bad (a slight improvement) of the other 24/25 days per month I would say that about about 10 - 15 of these I feel totally fine - i.e. 100% healthy. In other words although my bad days are still here and are themselves not greatly improved my good days are frequently very much better than they have ever been - to the point that during these good days I would never have known I had taken these drugs.
This is clearly very encouraging as is the fact that I am currently on day 18 - in a row - of an uninterrupted good spell - with no bad days at all. (Yet this followed on from my worst start to a month since last year - 4 of the the first 8 days of September were bad for me. I make this point to reassure people that there is NOTHING predictable about withdrawal). This is my longest good run since I got off the drugs.
My life during the past six months has shown me that I am improving. I was asked at work to accept a 5 month temporary promotion leading an office of 10 workers and chairing meetings!! (which has just come to an end), I play squash and tennis - every 10 days or so - and generally speaking lead a pretty full life. Furthermore my wife is pregnant and we expect our second child in March!
However I would not get carried away. I would still not say that I am healed - I am not - I do still get bad days including severe headaches - my worst symptom. My mindset about healing has changed a little over the past 6 months though. Madelon wrote here some time ago that she did not measure healing through months or weeks but through calendars used up. Although I would not go quite that far I agree with the sentiment. Healing for some us does take a long time, but that doesn't mean that you feel for the whole withdrawal period like you did after one month off. We are improving all the while - in a haphazard fashion - but it does seem to take a long while to achieve total and consistent healing - but I am definitely getting there. I just checked and in August I felt totally fine on 15 of the days of the month - that's half the month where I would never have known I had taken the drugs - a major improvement. Healing is like trying to watch the tide come in on a beach - the waters never seem to actually advance up the beach as you look it - but turn away for a little while and look again and you can see the progress much more clearly.
So keep up the fight. Progress does happen. All will heal but at low times remember that timescales differ and that bad periods always happen.
2 Year Update
On 8th March 2009 I marked being off benzos for 2 years (after a 15 month taper). For full details please read my success story under Steve in the files section. I have posted an update every 6 months since getting off so thought I would write again about my progress.
In general this has been very good. Except when I am ill with a cold or such like (I'll come back to this) I am, for the most part, feeling ok or very good. On an average month I now have about 20 days feeling really good, 8-9 days feeling ok and 2-3 days feeling a bit crap (for me this almost always means a bad headache.) On getting off the drugs my symptoms were really bad headaches, dizziness, bladder urge, shoulder and neck pain and anxiety. These have now all largely gone.
The major exception to this is if I am ill with something else - even just a heavy cold. In February I had a cold and my symptoms all flared up to an extent. I liken my healing to a newish scab over a cut which does not take much to be pulled off and for the wound to be exposed again. However I am hopeful that as time goes by and my healing progresses this will improve.
I continue to work 30 hours per week and on another day look after my nearly four year old son. Last Friday my wife gave birth to our second child, a daughter about which we are delighted. I play squash most weeks - sometimes this prompts headache the next day, other times it does not. So my life is full.
In summary then at 2 years off I would not describe myself as totally healed but would say that when I am otherwise healthy I am pretty close to being totally better - about 90% - this is an improvement on 6 months ago and 6 months before that etc. For those reading this in the midst of feeling terrible from day to another please take heart. Things really do improve and your life does return. As it does you will appreciate your life and your health that much more I can assure you. As is forever mentioned here I would advocate in the strongest terms the following points:
1. Taper, taper, taper. Do NOT cold turkey - it is the ultimate mirage in the desert.
2. Avoid alcohol - I have had none since July 2007.
3. Keep a diary of your progress.
4. Try to live as healthily as possible - fruit and veg, plenty of sleep (if possible) etc.
5. Read the success stories here.
Lastly and of greatest importance do not give up. Ever.
3 Year Update
As of 7/3/2010 I have been off the benzos three years. I have continued to make progress over the past 12 months and now would rate myself at perhaps 98% recovered. I feel totally fine nearly every day now, the only exception being when I do very intense exercise this does sometimes trigger a 'benzo' headache and likewise when I am ill with a virus or alike. Aside from this I basically would not know now that I had ever taken the drugs.
I continue to work 30 hours per week, look after my two young children and play sport etc. My life is basically where it was pre-benzos although I feel a lot wiser for what has gone on between then and now!
As I was advised at the very beginning of this journey it has taken a long time and I still have a tiny amount left to go even at 3 years off. However I have seen continual improvement (after the first 6 months off the drugs following my taper) as I have healed. I hope those reading this can take real encouragement from my story and know that their pain too will pass and their life will return.
Four Years Off:
I am now four years off the benzos. The progress continues but the healing is
still not totally complete albeit that it is very close. Almost the whole time
now I feel fine but get occasional days with a manageable return of my symptoms.
I have continued to note these days and thought it may be of use for any reader
wondering how healing progresses to know how the number of my bads days has
reduced during the past four years. The following is an accurate measure:
Five years off:
Disclaimer: The information contained in this website was not compiled by a doctor or anyone with medical training. The advice contained herein should not be substituted for the advice of a physician who is well-informed in the subject matter discussed. Before making any decisions about your health or treatment you should always confer with your physician and it is always assumed that you will do so.
Last updated 22 July 2015