Benzodiazepine Site Map

GWEN'S BENZO WITHDRAWAL DIARY

 

BACKGROUND

I began taking 1mg of lorazepam and 50mg of the SSRI anti-depressant Lustral, during a period of bitter internal and litigious struggles with our business partners, which dragged on for a lengthy period. During this time I began to suffer daily panic attacks. Despite the fact that I had learned meditation and continually practised diaphragmatic breathing in an effort to control it, the panic attacks continued mercilessly for about nine years.

I remember that the initial dose of 1mg lorazepam per day made me feel drowsy, especially when driving but I didn’t realise until I began withdrawal, that this dosage was the equivalent of 10 mgs diazepam. I was unaware of the problems involved in reduction and so just went ahead and started to cut up the tiny lorazepam tablet into thirds, taking two thirds for about three months and then down to a half tablet. Conversations with my doctor went along the lines that I should remain on the daily 0.5mg which the doctor considered a therapeutic dose and too low to cause addiction. During this reduction I was aware of severe muscle pain and borrowed a pharmacology book from a nursing friend to ascertain if this was a side effect.

I remained on 0.5mg lorazepam for ten years during which time I felt in a kind of vacuum, incapable of summoning the resourcefulness that hitherto had always been part of my make-up. The panic attacks continued unabated. My doctor was kind and understanding, but as my husband informed me, in his view, the only thing the doctor appeared to do, was give me a metaphorical pat on the head and dish out the prescriptions with regularity. I had even been to a Rheumatologist about the muscle pains, for which I received the SSRI anti-depressant Lustral and anti-inflammatory tablets. He suggested I came off lorazepam because “it affects REM sleep patterns”. However lorazepam was the only thing that helped me to sleep and I wasn’t motivated to come off it, because like many victims, I didn’t realise what I was storing up for myself, even with that small dose.

It was during an upsetting domestic problem in 2004, I realised I was totally incapable of functioning effectively. All I could do was cry, and so I decided I had to take some action to change this, but due to circumstances I wasn't able to do so until the spring of 2005.

I viewed my withdrawal as a “Journey” for which I needed a map (a scheduled programme of reduction) - places to shelter (i.e. the support of family, my contacts in the benzo/bcnc group, my new GP and a GP / homeopath whom I saw privately and who also took on the role of a listener and motivator) and provisions (the supplementary aids I used).

START OF THE WITHDRAWAL

In March 2005 I informed my doctor I wanted to come off lustral, and it was agreed I should take it every alternate day and then every couple of days. I continued this regime and successfully weaned myself off over two months. In fact, I was to realise at a later date when trying to withdraw from the lorazepam that I had done it the wrong way round. However, a real bonus emerged because once I had stopped taking the SSRI, the panic attacks became a thing of the past.

In June 2005 flushed with that success, I now wanted to tackle coming off lorazepam, and informed my doctor “What did she think?” Her reaction was totally unexpected. It could even be described as a non-reaction, because she appeared to want nothing to do with it. I suspect it was because at this stage, she had nothing else to offer and I went home in a state of shock.

What to do now, - panic was setting in? I remember reading something somewhere about Cognitive Behavioural Therapy, what was it, would it help me? I would try the internet. I keyed in emotive words like anxiety disorders, panic, tranquillisers etc. Tears were cascading down my cheeks. Somewhere along the line I must have hit the right button. Help came via the website “Beat the Benzos” and a man called Barry Haslam, who sent me a copy of the “Protocol” (guide to benzodiazepine withdrawal) as formulated by Prof. C. Heather Ashton, who is currently the leading authority on benzodiazepine withdrawal.

Barry and I drew up a proposed individualised schedule of withdrawal which I took along to my local surgery. It goes without saying that I now had another GP who gave me his support and encouragement over the difficult months that were to follow. I subsequently became a member of the steering committee of the BCNC group and am dedicated to helping my fellow sufferers, just as I myself was helped.

The following section gives details of my diary which I kept during the withdrawal from 0.5mg of lorazepam to zero medication and which took me fully nine months to complete. I have been shocked at the many wide-ranging and upsetting symptoms I have had to work through.

STAGE ONE

June 9th to mid-July 0.5mg lorazepam exchanged for 5mgs diazepam.
Because of the length of time different benzodiazepines remain in the bloodstream, it is now considered that diazepam is the optimum drug with which to start withdrawal. Stage one for me was to make the switch over. This stage lasted for five weeks. I was warned not to rush things, because again, the time one has been on benzos is relevant and like all things that require an effort of will, we need to set our own pace. I think too, that age and general health have to be considered in the equation. That is not to say that towards the end, when a veteran of “the system” and anxious to reach the goal, one is not tempted to quicken the pace. Another consideration I had to bear in mind when tapering was the percentage of the reduction in relation to the whole.

NB. As I had inadvertently withdrawn from the SSRI anti-depressant lustral somewhat prematurely, (it would have acted as a useful prop for the benzo withdrawal), I took the herbal anti-depressant St. John’s Wort to fill that void, (mornings with breakfast) and it proved invaluable. I remained on it throughout the withdrawal process. I took the “one per day” tablet and not the three per day variety, because one is focused enough on tablet taking with the benzo withdrawal.. It is important however to take the correct standardised dose of St. John’s Wort. In addition, I took a food supplement called 5 HPT (available from Holland & Barrett), which is said to prime the manufacture of Seratonin, the level of which, when low, is a major player in all forms of depression. I took 2 capsules of 5 HTP along with my evening dose of diazepam and continued with it after withdrawal was completed.

STAGE TWO

Mid-July to almost the end of August (5 weeks) 5mgs down to 4 ½
2 mgs morning. 2 ½ evening.
I took longer in the first months because I was scared to rush things and this stage involved the first reduction.
As time went on, it became increasingly clear with every half mg reduced, I experienced a “chemical dip” anytime between 36 and 72 hours following. This manifested itself as an emotional roller coaster, equivalent to “The Big Dipper”. A pattern was emerging! I would have to hang on as best I could when going downhill, and eventually after a period (never exactly the same) of a few days, I would find myself climbing up again and “normalising”. After the first couple of reductions I realised I needed a prop and so I made a colourful card and headed it “Courage”, in which I charted the event and how I had always come out of it. I kept it in a drawer and got it out each time at that downhill side. It acted as “a signpost” on my journey and was of course symbolic. I found too that my “lows” were particularly bad on first waking, which is often the case in depression. It was quite some months further on before this pattern resolved and I eventually learned not to be afraid of it.

During this period I had to go into hospital as a day case for a minor procedure. I was inordinately nervous! Two weeks later I had to face the Dentist for a major filling. Having good teeth I wasn’t usually phased by going, but on this occasion, I was TERRIFIED (see Protocol- dental phobia). On both occasions, I took the homeopathic remedy Aconite, which is best obtained from a homeopathic source in tiny sugar coated pills 30mgs which easily dissolve on the tongue, as opposed to those from health shops which don’t. Two or three can be taken every ten minutes for up to half an hour, until you feel yourself beginning to get control. I also took Bach Flower Rescue Remedy drops, because believe me I needed all the help I could get. I took them at the same time as aconite, whether or not that is correct. I still use both these aids “in a tight corner” and believe they really do help.

At times when my spirits were really low, I used to talk to Barry and this is why I believe it is vital to have an ex-sufferer available either on the phone or by email, to help talk one through such moments. It is akin to having a Benzo Samaritan or Befriender. Barry was always calm and measured in his approach, his gentle voice giving me the reassurance I needed. The knowledge he had been there before me was the tremendous link. I understand the BCNC group endorse this suggestion.

STAGE THREE

End of August to end of September - Reduction to 4mgs.
2mgs morning 2 mgs evening
Over the past two or three weeks I was getting a considerable amount of pain. It seemed to be everywhere! I already had some arthritis in my shoulders initially due to an injury, also a lack of cartilage in both knees necessitating an arthroscopy some five years previously. I mention this because one of the difficulties with which one has to contend in withdrawal is that it targets pre-existing conditions and renders them “acute” as well as throwing up new symptoms in other areas so one is totally confused as to the real nature of the problem. I took painkillers ++ (always within the stipulated recommended dose) and still do, with the hope I can reduce these too, in time.

I tried hard to continue at every stage with my MEDITATION. Sometimes I can do it, but other times I feel too agitated to sit down and close my eyes. One just has to give up the attempt and try again later in the day if possible. It does take practise and ideally should become a habit whether in withdrawal or not. The benefits are difficult to assess but it does eventually produce a surprising clarity of thought which comes almost without one being aware, until it happens. It also involves the concept of making time for oneself.

STAGE FOUR

October - down to 3 ½ mgs

1 ½ mgs morning 2mgs evening
Pattern with emotional roller coaster continues relentlessly. It is running alongside a parallel track of PAIN. Excruciating, burning sensations in all the muscles of my body. Sometimes I just STAND STILL AND BURN! Even my very bones are sore and tender to touch. My feet and ankles feel as though they have been through a Bone Crusher. It’s horrible! I’m panicking! Taking painkillers like sweets! I feel terrible, tense and anxious! Is it documented in the Protocol? Yes, thank God, there it is!

I have resorted to playing tapes of what are generally known as “White Noises”. i.e. natural sounds like the sea. I imagine myself walking along the beach with waves rolling in and gently breaking on the sand in a soft white foam. “Thunderstorm” is another particularly effective one for me, because I imagine the thunder when it builds up and rents the sky, like a wave of tension in my body, breaking when the rains come, and washing the tension away. With soft music or other subjective sounds, I try to imagine being in a favourite place where peace and happiness have previously been experienced.

STAGE FIVE

November – reduced to 3mgs.
1mg morning 2mgs evening
Have now got agonising pain all along the top of the dorsal area of my back. It runs transverse from one shoulder blade to the other. The cervical vertebrae C6 and C7 are inflamed and very tender, also the muscles in the tops of my arms feel as though I have been punched. I am in agony! Can’t sleep, getting up to put ice packs on during the night, painkillers +++. When will it all end? Also my chemical roller coaster is going down and not coming back up. I keep praying for relief but somehow there is silence. God has helped me out of other pits in the past, I can’t believe he is going to abandon me. Oh ye of little faith, it is sorely being tested! I dash off an email to my American contact, herself a recovered addict, now a successful psychotherapist, and I also rush to phone Barry. Yes, he knows that symptom very well! This is immediately followed by an email response from America, how kind! Yes, this was one of her worst symptoms and she too thought it was some terrible disease at the time. If she did but know, I took her email to bed for quite a few nights, to keep re-reading it, like a child with a comfort blanket.

I have started to have some relaxing treatments at a local clinic. A body massage one week and reflexology (feet) the following week. It is soporific and wonderfully relaxing. Although expensive, it is worthwhile and psychologically again I am making time for myself and my needs. Perhaps family and friends desirous of helping could make a contribution towards these sessions, even if it is just during the withdrawal period.

STAGE SIX

December 2 ½ mg
Nothing during the day except my usual St. John’s Wort. Keep the full dosage for evening alongside my 2 5HTP tablets which in any case contain a small quantity of the herb Valerian. Continue to have muscle pain which is now in my thighs when I stand up and the upper dorsal pain remains fierce.

STAGE SEVEN

final week of December to Jan 18th. 2 mgs. Take at night.

Beginning to have flashing rheumatic pains in my joints, especially in my left big toe (am I getting Gout??) Also in my left thumb. It is not letting up! Rubbing anti-inflammatory gels on these sites for days on end, plus taking anti-inflammatories and usual painkillers. I am truly sick of the whole thing, when will it end? Have to make myself take stock. I am seeing the withdrawal as a dark tunnel through which I have to pass in order to reach the bright light when I emerge. I long to come out into the light! I must keep it in my sights, nearly there now.

STAGE EIGHT

January 18th to 4th February. 1 ½mg at night.
I am not waking up depressed in the mornings which is great, although the other difficulties haven’t gone away and I expect some other symptom to emerge with each passing week.

 

STAGE NINE

5th February reduced to 1mg
Thought it would become easier the lower I got. No such luck! It seems to be getting even harder if that’s possible; no, it can’t be possible, because it has been awful all the way. In fact it is a malevolent little monster!
Full force hit me mentally on Feb 9th. I feel like shit! Not only that but I have had an acute flare-up of the cervical vertebrae again, which made me feel a little dizzy (I don’t like that).

Feb. 10th Feel on “Red Alert”. My body reminds me of an old manual car with the choke pulled fully out. It’s revving up! I took my pulse but it was normal. Tried meditation and anything else I could throw at it, but can’t seem to come down “off the ceiling”. Am out of aconite, must get some more. Even my hands are shaking when I’m pouring out the milk. I wonder if alcoholics feel this way? Went to see my GP. This one is really understanding and always praises me for my efforts, as does the homeopathic doctor I visit, who is also a GP somewhere else. My doctor prescribed atenalol for the odd occasion when I find myself like this. It is a beta blocker, which he said would also see me through the air flight on our forthcoming holiday to Florida. I remember reading about it in the “Protocol”. It does help me to relax eventually.

Still on 1mg along with my 5 HPT at night and St Johns in the mornings. My doctor advised me to refrain from my scheduled reduction due to happen during the holiday, in case I ruined the trip. However on arrival in Florida, I reasoned that the sunshine and varied scenery, activities etc would all help to detract from it, so I decided to reduce. Two days later I was going mad to catch the plane home. What a fool I was to think I could beat that chemical dip. Nevertheless, there are times one has to take a chance. Three days later I “normalised” and we went on to enjoy a great holiday.

I took my last dose of diazepam on March 4th on return. I suffered insomnia for quite some time which I suppose was exacerbated by jetlag. I have been suffering some hay fever symptoms, which is strange because I don’t normally start with that until the end of May, beginning of June. I wonder if my immune system is possibly out of sync?

I found a private therapist and set up Cognitive Behavioural Therapy sessions to coincide with this period when I will be in limbo. My object now is to learn how to interpret problems in a more positive and less painful way. To find an alternative view other than the ones my thought processes initially project. People who find themselves on benzos are usually sensitive and caring individuals who try to take responsibility for things outside their control and suffer for it. I think for me this is the key. I am beginning to ask myself whether I realistically have any control over a particular situation or event and accordingly have to tailor my thoughts and responses based on the facts. I need to learn these new skills, to examine the way I view events that happen both to me and around me and give myself some flexibility to exercise choices. I hope too, those blunted GABA receptor cells will get a move on and start to regenerate.

CONCLUSION

I want to thank all the people who helped me and Prof. Ashton whom I have never met but without whom we would all be left clinging to the life-boats.

7 weeks down the line, I’m still having some muscle pain and my sleep pattern is still somewhat disturbed; plus, I occasionally get a bit “hyper, but withdrawing from benzodiazepines is a marvellous achievement and one of the hardest things I have ever done. I feel proud to have come through it. In the meantime we must do all we can to help one another. I have learned to say NO in the appropriate places because I care sufficiently about myself not to have to go on this journey again.

ADDENDUM

This is the records of one person’s journey during withdrawal and it must always be remembered that rates of reduction are specific to her and should not be followed religiously, since each journey is an individual thing and must be undertaken at rates that suit the individual. Always remember that slower is better.

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