As at 3.11.2008 Read About Anthea's Year of Recovery
A month ago today, on the 3.10.2008, I took my last dose of tranquillizer, thus ending an 11 year battle with these drugs. This is the story of my journey.
I think I need to go back to when I was 21. I was in my first year teaching and I had just returned to my job after a bad bout of the ‘flu. I wasn’t feeling well and can recall falling asleep at my desk at lunch time, the bell rang and I made my way to my classroom and that is all I recall for the next 24 hours when I woke up in hospital.
It seems that I had got my class started and then tried to leave the room. As I did so I either passed out or started to have a seizure and as I passed into unconsciousness, I managed to knock myself on the handle of the door on my way to the floor. Whatever made that happen, I was seizing when I hit the floor, I also burst my eardrum and put a hairline fracture in my skull.
I guess I must have continued to have some seizures while I was unconscious because the doctors kept asking my mother if I had had epilepsy as a child, which I hadn’t. Nothing about the possibility of epilepsy was mentioned to me at that stage. I woke up 24 hours later; spend a week in hospital and 6 weeks recovering at home before I returned to work. There have been implications from this episode; I have almost no hearing in the ear that I damaged, I seem to have some sort of minor scaring on my brain as a result of the bump and I have been having trouble with uneven pressure in my eyes to the extent I need drops to prevent glaucoma – so it wasn’t a very good thing to have happened.
Life for the next 11 years went back to normal. I got married, I changed careers three times (or four if you count the year as a short order cook and barmaid in the UK), I loved my jobs and was successful at them and I traveled quite extensively during that time. They were good years.
At the age of 31, I decided that it was time to have a family and a year later my twins were born. Five days after their birth, while I was still in hospital I had another seizure. I had all the normal tests and was told that they didn’t think I would have another seizure but that I wasn’t to drive for 12 months.
So here I was, the mothers of twins, no car when 9 months previous I had been a very successful career person, the most highly paid female in my organization – a pretty sharp adjustment curve but at that stage I wasn’t really worried. I was head over heals in love with my babies, how it is possible to fall in love so quickly and irrevocably is still a wonder to me – nature is a wonderful thing. Just as well because the next 12 months were very hard work. My husband asked the nurse at the hospital what she thought of our babies and she said “They were very active babies”. Oh boy was she right, they didn’t seem to know the meaning of the word sleep and even when the decided it might be a good idea they didn’t want to do it at the same time. Nor sure how we got through that first year but we did have lots of family help.
When the babies were a year old I went back to the doctor because I wanted my driving license back. I didn’t think it would be a problem, I had had a physically demanding year, very little sleep and I had been fine but he insisted on doing an EEG. I had a five minute appointment after the EEG and all the doctor said was that I had a very abnormal EEG, I had epilepsy and that I would never drive again, that I shouldn’t bath the babies when I was alone and I shouldn’t carry them over concrete and he didn’t recommend drugs at this stage – goodbye – I don’t need to see you again – no support, no nothing. WOW – well that hit me like a ton of bricks and I suspect that I haven’t been the same since.
I sort a second opinion and was told that the issue wasn’t driving, the issue was doing the responsible thing for all concerned and that was to take drugs so that I didn’t harm my children and so I didn’t ‘upse’ them by having a seizure in front of them. Again WOW – haven’t been the same since then either.
After a deal of soul searching, I decided that I wasn’t fitting so I wouldn’t take drugs but I would not drive either just in case. In retrospect I think this was the right decision to make but the psychological implications were huge. If I felt unwell I worried I was going to have a fit, if I didn’t sleep I worried about having a seizure, I worried about being alone with my children, would I drown them in the bath or damage them psychologically by pegging out on them somewhere.
Over the next two years I started to develop an electric shock sensation in my brain and twitchy hands and legs and sometimes a whole body twitch. I visited another neurologist who didn’t have a clue what was happening and didn’t seem to care and I did do the round of other doctors trying to come to grips with these new things in my life. Ironically, I ended up with 6 scripts for benzos in one form or another. I did take Ativan for a week but I felt myself becoming tolerant to it and stopped, the rest of the scripts went in the bin. The lowest point was when a homeopathic doctor wrote a script for benzos.
At that point I gave up trying to find anyone to understand and tried to live with what was, but it was hard. I noticed I was getting very anxious, I was certainly getting a lot of insomnia and looking back I think I have may have been depressed as well. Slowly I learned to live with things but I always felt like I was living kind of a half life, not fully OK because of the concerns of what my brain was doing.
When the children were 13 years old and were more independent I started to get a lot of migraine and headache and all of a sudden I thought to myself – “Enough is enough”. I wanted to get to the bottom of the problems I was having, get to grips with them and get on and enjoy life a bit more.
THE MEDICAL PROFESSIONS SOLUTION
Well first stop was my GP, who suggest blood pressure meds for the migraine. Took those for one day, the brain fog was awful so I stopped those and went back to her. She then suggested an AD, now fortunately I knew that taking an AD for someone with a low seizure threshold wasn’t a good idea – my doctor had forgotten about the seizure problem! So I got a referral to another neurologist who specialized in migraine.
The neurologist didn’t seem very interested in my headaches but did her eyes light up when she discovered that I was an unmedicated epileptic. After tests, her conclusion was that someone who’s EEG was as abnormal as mine should be medicated that I was running a terrible risk not taking medication despite the fact that I had not had a seizure in 13 years. She prescribed an anti-seizure medication – sodium valropate, told me she had prescribed it by the bucket full and not to worry about the side effects. She also prescribed an AD for my migraine, telling me I could die of a stroke if I didn’t sort that problem and she referred me to a psychologist.
If I wasn’t a wreck before that I most certainly was afterwards.
I sat on the scripts for 6 weeks and slowly sank into the worse depression I have experienced. It seemed like I was caught between a rock and a hard place. I really wanted to get away from the anxiety of worrying about the electric shocks and the possible epilepsy. I felt that the worry was limiting and impeding my life but I really really didn’t want to take drugs. But after six weeks of thinking and getting more depressed I decided that I didn’t have a solution to the worry and maybe I need to try the drug way.
So I filled the script for both the anti seizure med and the AD but decided I wouldn’t take both to start with I would just try the anti- seizure med. I took the recommended dose that night and woke in the middle of the night with the “screaming heebie jeebies” – I don’t know it but I had had my first hallucination. The next day I saw two emergency doctors, my GP and I rang the specialist all of who told me what I had experienced was not due to the medication, it was due to my epilepsy getting worse (suddenly after 13 years of nothing!) and that I needed to increase the dose as quickly as possible. I think my logical mind was on holiday that day, or was out numbered by all the brilliant medical ones and I followed instructions. Every time I increased I experienced hallucinations, every time I talked to a doctor about I got the blank look of non comprehension.
Eventually my GP said maybe I should just get off it and she gave me a withdrawal schedule. I started to do that but experienced some different but equally awful sensations, like my body was being squeezed inside out. So I was between another rock and a hard place couldn’t go up, couldn’t go down and by this time I was beyond terror.
I was sent back to the neurologist who put me into hospital “to get my meds right!” She increased the sodium valproate despite the hallucinations and prescribed me clonazepam and sent me to a psychiatrist. The psychiatrist was actually every good and over three weeks have decreased the amount of clonazepam I was taking down to .125mg and then sent me back to the neurologist.
The electric shock sensation, that the sodium valproate was supposed to help, weren’t better, they were different. I went from having a fairly large electric shock occasionally to having minor ones up to 20 times a day so to me it wasn’t a solution. The hallucinations did eventually stop but they were replaced by so much brain fog that I could hardly think.
In the middle of this, my neurologist when overseas for 6 weeks so I took the opportunity to see another one, for a second opinion. He suggested that I try some other anti seizure meds to see if I got on better with them.
Now here is another problem with anti-seizure meds you can’t stop one and take another. You have to take one, get established on it and then slowly withdraw the first one. He said to try tegrotol, which I did for three weeks. It made no difference and made my headaches worse. So I got a withdrawal schedule for that and followed it – more horrible but different brain sensations – with no explanation from the doctor as to what they were – blank look, black hole expression on face. He prescribed Lamictal – I was starting to get the idea by this time and told him that if it caused me any trouble I was stopping it immediately. He told me to talk two pills so I took half and I spent the next 24 hours sitting in the middle of my lounge floor in tears because I felt like I had been lobotomized – I couldn’t think or feel. I went back and told him what I thought of that idea and he prescribed something else – I can’t remember what it was but one of the side effects was possible irreversible blindness so that one went down the toilet.
By this time the first neurologist was back from overseas so I went back to her and told her I wanted off the sodium valproate, she agreed reluctantly but only if I increase the clonazepam from .125mg to 6mg to cover me from seizures. I wasn’t happy about it but I agreed; the clonazepam didn’t give me brain fog or hallucinations. I had a feeling that it was a sedative and I asked if was habit forming or related to valium and was told that it was a valium derivative but because I was using it for epilepsy control and not to get a high that it wouldn’t be a problem. I unfortunately believed that. I had spend a lot of time looking up epilepsy and sodium valproate, some of my family and friends told me I had scared myself into believing the worse so I decided I wouldn’t so that this time – what a mistake to make. So I slowly increased my dose of clonazepam to 6mg and went back to the doctor for a withdrawal schedule from the sodium valproate and ended up in an argument with her because she said she hadn’t agreed to take me off.
This time I was beyond furious and started looking for help elsewhere. It led me to a doctor in Melbourne, Australia. The doctor had a world renowned reputation and the hospital there at least had equipment for doing extended EEG monitoring and not just the 10 min sessions available in NZ and what I wanted to know was were the sensations I felt epilepsy or something else. So I arranged to go to Australia and have a 24 hour monitoring done. This doctor’s conclusion was that I did have some abnormal EEG activity but it wasn’t that abnormal, that there didn’t appear to be a relationship between my strange sensations and the EEG’s and that I seemed to be totally over medicated given my situation. He felt that my strange sensations were probably just stress related. He suggested I come home and get off the meds.
I was elated. That is what I thought, it was my gut feeling. Little did I realize what I was in for next!
GETTING OFF CLONAZEPAM
The first drug I tried to taper was the sodium valproate. The doctor had said to cut 200mg at a time. Two weeks after my first cut I started to get some very strange emotional symptoms: rage, depression and a strong desire to throw myself off the nearest bridge. So I talk to a few doctors about that and get the blank look of non comprehension and the questions going into a black hole type of response. So back to the internet and self investigation it was for me. I pretty much scoured the world for withdrawal from anti seizure meds – the main documented problem was rebound seizures. I also found that these meds were prescribed for bi-polar and mood control. I wrote back to the doctor in Australia who thought the emotional problems could be like rebound symptoms because of the mood accept of the drug. Oh great!!
So I halted progress on the sodium valproate and moved on to the clonzapam. I started to withdraw by .125mg a month and at first it went OK and then it started to get difficult. I was getting more and more anxious, agoraphobic and more depressed and everything just felt wrong.
So back to my GP with my Dad in tow for backup support and we basically spent ah hour talking to her or did we spend the hour yelling at her - possibly. I told her I needed to get this problem sorted, I needed off these drugs, I felt I needed a doctor who knew about these drugs and what they were doing to me and if this was all in my head then I needed that sorted too, I would see a psychologist or a psychiatrist if it were necessary.
It took her a long while to find someone to help – several doctors refused me but in the end I got a referral to a specialist physician like a super GP who was also an addiction specialist. This doctor also worked with a psychiatrist who specialized in addiction. These doctors did have there pros and cons.
They were both extremely thorough. I was examined and tested from head to toe. It was nice to know that I was both physically and mentally healthy even if I felt nearly dead. I was encouraged to continue with my dry taper from clonazepam, which I did for the first 12 months I was with these doctors. It seemed to me to be very difficult, and I was still in that mind set that we all go through, that this shouldn’t be this difficult and there should be an easier way. Looking back I know now that what I was suffering then was very minor for withdrawal, I wish I had known that and had just kept cutting.
I think one of the things that these doctors should have done for me was to make me realize that withdrawal is difficult and that it is normal to feel awful while doing it. I feel that it is easy to say that now, I am not sure how they could have done it without scaring me more than I already was. I think that maybe they should have had a specialist psychologist working with them to prepared people for this journey.
After 12 months, they decided I needed some help to get off the remaining 3.75mg of K that I was still on and they hatched a plan. It went like this. I was to be crossed over from my 3.75mg of K to 135mg of Phenobarbital over a three week period. I was to stabilize for 2 weeks and then I was to taper my sodium valproate over 6 weeks and then I was to be withdrawn form the Phenobarbital over the next 6 weeks. Sounds great!
Well the first week was OK and then everything hit the fan and I basically become dysfunctional. It was hard getting out of bed, I couldn’t think, it needed all the IQ I could muster to put one foot in front of the other. I started getting huge electrical shocks through my head as well as 101 other symptoms. At this stage I was on 135mg of Phenobarbital and .5mg of K and I called a halt to the process. There is no way I wanted to continue any sort of process that involved changing any more drugs.
I got sent to a psychologist. It was agony getting there. I needed my Dad to drive me and my Mum to get me safely across the street. I was as much as I could do to sit and talk in the office let alone listen to her tell me this was mostly in my head and that if I wasn’t so sensitized to it all I would feel better.
The doctor then suggested I needed a support group but then joked that maybe I should start one because there wasn’t one in this area. That brought me back to the Internet and the Yahoo Support Group. What a relief. All these people doing the same as I was, all these people who felt the same as I did – I wasn’t insane.
I did try to post about my situation. All the first reply said was that what I had experienced with Phenobarbital was voodoo medicine – no support, no explanation or anything. In retrospect maybe that was a good summation but it wasn’t what I needed to hear at the time so it was 18 months before I posted again but I did read and read and read. I learnt heaps. It was the beginning of the way forward and doing things my way.
The Ashton Manual was such a comfort. The concept of doing it slowly and it being controlled by me and not by my doctors was the key that I needed. The group and the manual confirmed that this was physical and it wasn’t in my head. The psychologist got fired. The psychiatrist stayed because he gave comfort and a second opinion to my doctor but was banned from trying to talk to me about things psychological. And I started to try various options for myself.
I decided to try and drop 15mg of the Phenobarbital – it hurt so I stopped that. I decided to try to get rid of the remaining .5mg of clonazepam. Hadn’t quite figures out at that stage that .25mg was huge so I tried a .25mg drop. Ouch not good. Sat there for a while and bit some more reading.
The group was starting to talk more and more about water titration so I talked to Helen Jora quite a bit about it. I didn’t know at that stage whether I wanted to try mixing everything up myself – so I talked to my chemist who made me up a solution to my specification and I started to experiment with cuts that I could tolerate. In the end I was making cuts of .03mg every 2 months or so to get off the remainder of the clonazepam.
I was off clonazepam on 21 January 2004, around 6 years after starting it and 4 years after starting to taper it.
I never kept a really detailed schedule of my taper – but here is the record that I have.
For the first six months after the Phenobarbital crossover and the rapid withdrawal from clonazepam – I was almost totally dysfunctional. I was spending less than 8 hours a day out of bed. When I was out I was going very little. My parents were coping with the children and the housework and shopping. My mother used to leave here at 4pm most day after having done all my evening meal preparations and I all I did was to do some basic cooking to get the meal finished and on the table and then I was back to bed by 6pm. By the time I was off clonazepam two years later, I was probably feeling a little better but not enough to make my life significantly different, I didn’t leave the house unless I absolutely had to, I didn’t socialize or have people around, I hated talking on the phone, I was managing some intellectual and creative things at home as long as they didn’t need too much effort. Things didn’t get worse once I was off clonazepam but they didn’t get much better either.
GETTING OFF PHENOBARBITAL
I waited 4 months after finishing the clonazepam taper before beginning the Phenobarbital taper. At least I knew how I was going to do this – slowly and with my ability to cope and at least the doctor knew I was going to do this my way as well – so no pressure and the support I needed.
I again haven’t kept full records of the taper but this is what I do have
So the big day was the 3 October 2008 when I took my last dose of Phenobarbital and became a tranquillizer free zone.
No, “I’m off”, story would be complete without some discussion about symptoms. A quick check of the symptoms list at http://www.benzosupport.org/symptoms.htm says that I encountered 167 of those over my withdrawal period.
These are the ones that are still bothering me
I think more important than symptoms is there effect or what they do to your functionality. If I take the functionality list from the survey Self care - showering, dressing; Cooking; Housework and home care; Shopping; Socializing; Driving; Working; Exercise and Intellectual activity – I can eliminate driving because I haven’t been allow to since I had the epilepsy diagnosis. At my worse I was able to self care and to do some cooking but neither of those things were easy – the rest were impossible. Now I am pretty good at self care, cooking and housework. I don’t find the other totally easy but as long as I don’t do too much of them I can get by. I can socialize for an hour, shop and exercise for half an hour, intellectual stuff is a bit better and I can sit for 2 - 3 hours being involved with those sorts of activities.
HOW TO COPE
WHAT WAS THE COST AND IS THERE A SILVER LINING
On the one hand the cost of this has been huge – a complete disruption in the life I was living and the life I had planned. It has been 12 years of ill health. It has been 10 years of not working – a cost of half a million dollars is lost earning to start with and most regrettable the loss of not being fully involved in the last years of my children’s childhood.
With everything in this life what you loose on the one hand you make gains in other places. I have had 12 years of being able to be very close to my husband and my parents without having dozens of other things on my mind. I have to got to know them all much better and as a result to know and understand myself a lot better. I feel like having been down the bottom of this dark benzo hole has given me a whole new appreciation of life and now when I am able to do something that I haven’t been able to do for a while I feel like a young child in awe of the experience. I feel that I now know that the meaning of life is - “I exists ” and that is all that matters and that happiness can be found in “just being”. But it would have been nice to have learnt all that without having to go through this.
I don’t believe that this journey is over for me as yet. First there is the recovery period, I don’t know how long that will be, but in my mind I am giving myself at least 12 months before I do any sort of evaluation of where I am at. Then there is the question of the sodium valproate – do I need it? Should I get off that too? I suspect that I am going to have a go at getting off but I will give myself 12 months to get over the last two tapers first.
I need to thank my Husband and my Mum and Dad first because they have been there for me throughout this whole journey. Mostly they have just let me be, to do what I needed to do and they have been there always picking up the slack on the everyday chores that I couldn’t manage. I wouldn’t have coped without them. My children should be thanked too for managing the end of their childhood so well without me – they are fine young adults perhaps stronger and more independent than they would have been in different circumstances.
Second my thanks goes to Dr Ashton and her common sense approach to all this – of course slow and patient controlled is better – I knew that in my heart but it was such a relief to read it from a medical professional.
Thirdly all my thanks and love goes to everyone in the Yahoo Benzo Group; to the owners and moderators past and present, and to every single member that has ever written in and shared their story and their feelings – they all helped.
And just in case my current doctors ever read this, thank you for sticking with me through this and for being thorough in your care of me and for letting me do this my way in the end. I think the Phenobarbital was a mistake and you should have known how to taper clonazepam slowly in small increment but maybe you will know that next time you meet someone like me. (To the doctors prior to my current ones – how did you let me get it so wrong!)
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 29 July 2012