On nitrazepam for 40 years and various anti-depressants for 35 years, most recently effexor (venlafaxine) 225 mg. Now completely drug free at age 61.
Tapered from 5 mg nitrazepam and experienced no withdrawal symptoms. Also no symptoms of myoclonic epilepsy for which drug had been prescribed in 1975.
Apr – Aug 2013
Heightened sexual arousal most of the time and more depressed than usual. Weepy. Finding it very hard to function physically or cognitively. Everything just more of a struggle than usual.
Sep – Dec 2013
All nerves on high alert. Bedridden. Hardly able to lift head off the pillow. Had to prop up head with extra pillows to eat. Unable to read, watch TV, use a computer, listen to the radio/music. Not well enough for visitors. Occasional phone call but very difficult. Extremely ill. Memory and concentration shot to pieces. Slept a lot. Unaware of passage of time. Perceptual disturbances – objects appearing to move in bedroom. Dry retching. Had no idea what was wrong and was too ill to see a doctor. Thought it would get better, whatever it was. Not lonely or depressed or was I just too ill to care? Saw my first visitors on Boxing Day. Strange feeling as if the previous three months had passed in a flash.
Jan – Apr 2014
Decided to phone my GP. Refused a home visit. Dragged myself to the surgery. Nothing physically wrong on examination and blood tests revealed nothing. GP thought it must be depression. She too was fooled by the six month time lag since ending taper. Referred to psychiatrist. Diagnosis of chronic fatigues syndrome. Very odd. Was pleased I had managed to go to the hospital and walk along the corridors to this office. Returned to see GP. Offered referral to CFS specialist. I declined. Have not seen a doctor since then.
Still feeling very unwell. Some days better than others. Bowel problems started. Difficulty going to the toilet, spending hours in the bathroom. Prolapsed haemorrhoid. Very upsetting. Watching some TV. Sleep pattern very disturbed – often awake at night and asleep during the day. Managing to have visitors now and again. Any sort of physical effort still very difficult such as having a bath, doing a little dusting or hoovering.
May – Jun 2014
Feeling somewhat better. Was able to see quite a few friends around the time of my 60th birthday in June. I was feeling optimistic that I would soon be well again. Now able to watch TV for short periods and able to use computer. Joined BenzoBuddies and received the reassurance I needed that I was indeed suffering from benzodiazepine withdrawal syndrome despite the six month time lag. Able to have visitors about once a week but absorbing/concentrating on conversation was difficult and felt more ill afterwards.
Jul – Dec 2014
Everything just became a whole lot worse. Terrible nerve pain in lower half of body accompanied by awful head pressure and brain squeezes. I sometimes feared I was going to have a stroke. Fortunately these symptoms came in four hour bursts and then eased off and this helped me to cope. Lack of feeling resulted in partial incontinence which has been one of my most distressing symptoms and one which I feared might be permanent. Only able to have visitors once a month at most. Saw friends on Christmas Day which was really nice.
Jan – Mar 2015
Symptoms continued much as above. Once again unable to watch TV but able to listen to the radio and take an interest in current affairs. Nerve pain, head pressure, brain squeezes, spontaneous muscle contractions, disturbed sleeping pattern (awake at night), all very bad. Battery went in tablet computer. Distraught at lack of internet access. Three days seemed like an eternity until situation resolved. Had to order a new tablet. Lost a couple of fillings so worried about getting to the dentist.
Apr – Jun 2015
Able to have regular showers. Now able to stand long enough. Started walking up and down the length of the hall and doing leg exercises in bed. Started listening to audio books. Concentration a bit better. Still unable to read or watch TV but can type happily for hours on the computer. A new symptom emerged – I can no longer use a touch screen as the tips of my fingers feel numb but a physical keyboard is fine. In May I was forced to go to the dentist due to a broken, infected tooth. It was a terrible ordeal not because of the dental work but I felt so ill. However, it was lovely to get out in a taxi and see the outside world again.
On 14th June, I finished my ten month taper off the anti depressant effexor. It had been completely uneventful and for the first time in my adult life I was finally free from prescription drugs.
This has been a momentous month. I have been able to walk outside my own home and round the complex of apartments where I live. I have been to the corner shop and to the hairdresser for my first hair cut in 22 months. Visitors came from Australia and I was actually able to go out for dinner and down to the beach in their car. I cannot describe how wonderful these events have been. My ability to walk is still severely compromised but the nerve pain has gone and the head pressure, muscle contractions and brain squeezes are now intermittent and mild. I am truly thankful. My cognition remains quite poor but of course much improved but I still cannot watch TV or read. Bowel problems continue but are much diminished.
I have been able to get out most days for a walk. Some days are better than others. On a good day I can walk up to a mile in total. Other days, legs are very heavy and walking is difficult. I can now walk to the little supermarket at the bottom of the hill. Friends have taken me back to their house for a change of scene. I have finished my book and mastered the Blurb self publishing software, a huge achievement. Still can’t read very much. My own book is different because I know what is in it. However, proofreading it is a challenge. Set up this website and made a video for youtube. The third week of August was horrible. The plumber came to install my boiler and I coped with the workmen being in the house for two days. Went to friends’ house and felt very ill. Went into town by bus and felt very ill. Then had several days of downward pressure on my brain and pressure (like heavy weights) on my lungs making breathing very difficult. Thankfully that passed and I felt much better again.
Continued to go out for walks most days and managed a few trips into the town centre on the bus. Had one visit to the dentist by taxi, then bus home. Some pressure on brain and lungs but overall a reasonably good month.
Not such a good month. Still managing to walk outside but lots of miserable days / part days. However, one amazing thing did happen mid-October. I felt a CLICK in my brain just like a key turning a lock. It was a very definite sensation. I wonder what it means?
A very good month. Still managing to walk outside. Contacted Barry Haslam and STV and newspapers. Interviewed for STV news and Scotsman. Wrote to magazines, TV and radio programmes. Barry gave me contact details for Ann Kelly and Marion Brown. My most active month so far. Set up campaign website.
Still doing really well. Walking outside. Went into town on five separate occasions. An awful struggle but I did it. Met friends for lunch. Did some Christmas shopping. Went to the dentist. Continued with campaign. Had visitors three days in a row just prior to Christmas. Not well over the Christmas period so didn’t see anyone. Not any better in the run up to New Year.
Not a good month at all. Pressure on brain and lungs. Difficulty breathing. Not able to do very much at all. Very disheartening after November and December. Saw friends only once mid-January. Spoke on Radio Scotland very briefly.
Another bad month. Awake most nights, asleep during the day. Pressure on brain and lungs continuing. Toilet problems. Unable to see anyone. Not talking on the phone very much. Mood lower.
Things a little better. Pressure on brain and lungs eased off. Suddenly started sleeping all night and more surprisingly started to stay awake all day. Not feeling very good during the day and unable to do very much. Spent most of the time colouring in and listening to the radio. Not on the laptop so much. Not seeing anyone. Not on the phone very much. Finding it hard to keep up morale.
A momentous month in some ways. On 3rd April I experienced a huge surge of electricity through my brain and legs whilst lying in bed. It was a good feeling as if my body and brain were being kicked back into life. It lasted about an hour. My brain has definitely reconnected with my legs so walking is much easier. On 21st April I had my first proper “window” when all symptoms seemed to vanish and I was able to do quite a few things for a couple of hours. I had another couple of windows over the course of the next week but not quite so dramatic. In between these events things have not been good. Have to rub my legs for hours every day and this is accompanied by distress in my brain which drives me to despair for it to stop. Continue to have great difficulty going to the toilet though it is always getting a little easier. I have started to declutter my flat. There isn’t an awful lot else I can do right now but I can shred / rip up paper and take it for recycling. Now managing to walk to the recycling point fairly regularly (5 minutes there and back). The death of my ex-husband this month made me sad.
This has been a better month. I managed to see a GP privately on 5th May and was reassured that I do not have a rectal prolapse. Friends met me there and took me home. On 10th May I was able to go to hairdresser (5 minute walk there and back) and get my hair cut. The first time this year. I was so pleased to have my hair tidy again. I then went to the dentist on 12th May for a filling. I coped fairly well and even managed to go for a coffee afterwards and take the bus home. Took a taxi there. That has been my best day this year. On Friday 13th I found myself locked inside the communal bin enclosure but thankfully there were workmen in the car park and they let me out. I felt very weak and vulnerable and very upset at the thought of it having happened at night with no-one around. I could have been there all night. I have continued to declutter and on 16th May a local charity came and took away six boxes plus a large suitcase for their charity shop. I have been going to the recycling point most days. It is good to see my flat looking a bit less cluttered. Tried a few sips of martini, first alcohol in about 30 years. No ill effects. No idea how long that bottle has been in my cupboard!! Not 30 years, I am sure of that. The need to keep rubbing my legs is diminishing which is a great relief. It was taking up about 4 hours a day which is just ridiculous but I don’t suppose I have anything more important to do. Quality of life is still very poor though progress is continuing.
An eventful month. Obsessed with getting rid of stuff out of my flat. Shredded/ripped up about 10 reams of paper. Friends came round and put out four items of old furniture to be uplifted by the Council (chest of drawers, vacuum cleaner, trunk and gate leg table). Felt angry about all the “rubbish” I had accumulated and just wanted it gone. Was quite distressed about it all. Had about 10-12 days which were comparatively good but the rest were pretty bad. Toilet problems continue to be very distressing. My birthday was a miserable day but the next two days were quite good and that made up for it. One day my brain was in overdrive and I had to keep doing things even though my body wasn’t really up to it. It was very unpleasant. On a positive note, I was able to look at the TV screen for short periods, something I haven’t been able to do since September 2013. I was able to watch some of the tennis but not the men’s final which Andy Murray won. On 23rd June, the UK voted to leave the EU so there was plenty of political discussion on the TV after that. David Cameron resigned as PM, Michael Gove decided to stand for the leadership of the Tory Party, Boris Johnson dropped out. Theresa May and Andrea Leadson were to compete, then Andrea dropped out, leaving Theresa May to become PM. In the meantime, the Labour Party descended into chaos with many Labour MPs resigning from the Shadow Cabinet. I was pleased that I was very interested in it all and able to absorb quite a lot of the discussions.
Another eventful month. I had about the same number of “good days” as in June, about 10 or 12. Continuing to watch TV. Chilcot Report on Iraq War was finally published after seven years. The fallout from Brexit continues. More terrorist attacks of course. Particularly shocking attack in Nice on Bastille Day, 84 people killed by man driving a heavy-goods vehicle. Just terrible.
Arranged for window cleaner to come and clean windows. Also plumber to fix bathroom sink tap. Ordered a new washing machine which turned out to be a very stressful process. Had to return it, then John Lewis refunded the wrong amount. Re-ordered machine. Plumber/electrician managed to install it but it took several hours. Had visitors several times, friends I had not seen since last year. One day was particularly good, very clear thinking, conversation was relatively easy. Electrician was here when friends arrived and I coped very well. Very happy that I have managed to do all the things I need to do in the house. Managing to get out most days for a short walk. Had hoped to see bigger improvements in my walking but it hasn’t happened. Perception of time seems to be normal again – time no longer stands still nor does it go at the rate of knots. Have lost interest in colouring in – I had been doing that for hours every day since the beginning of the year. My brain seems to want to do something slightly more demanding which is a good sign so back to doing puzzles as I still can’t read. Watching TV helps to pass the time. I rarely sleep or even lie down during the day so I have more hours to try and fill. I sleep very well now during the night, still too many hours but it is such a big step forward. No more sitting up all night.
The first half of the month was good. I made two trips into the centre of town on the bus for a coffee. Still difficult of course but easier than last year. Had visitors a few times and coped well. The plumber came and fixed my bathroom tap. Had my eyes tested at home but wasn’t well that day so found it difficult to cope. Have started to sit in the lounge for several hours most mornings which is a good sign of progress and a real psychological boost. It is the first consistent move out of the bedroom. The effort of being up means that I am once again sleeping in the afternoons but usually only for an hour. The second half of the month wasn’t nearly as good as the first half and I had to cancel a dental appointment. Overall I am pleased that I continue to make progress.
Continuing to get up for several hours a day and going for walks. Some days I am in bed mostly, other days I stay up half the day and manage a couple of walks (half a mile each). Had a few days where I stayed up for 8 hours. Had visitors a few times. Family problems made it a difficult month emotionally. Started practising French and German and learning a little Spanish. It helps to pass the time.
Continuing to get up most days and staying up longer, usually most of the day. Also walking more, often a mile a day, sometimes more. About half my days now are “good” days. Had visitors a few times. BMA announced that a helpline and specialist services were needed. Victoria Derbyshire covered A/Ds, Shane Kenny produced documentary on benzodiazepines. Radio 5 Live did phone in programme so I spoke on that for a few minutes. Daily Mail published a spread. I contacted STV and they agreed to interview me again. Wrote to Scottish Health Minister. Response said no change in policy – i.e. no helpline but she would be unlikely to tell me if there was a change of mind. Happy with the progress I am making though I would always like it to be faster. Have started using weights to strengthen my arms.
Continued to have good days in November. Staying up as much as 12 hours, walking a mile or more most days. Very heartening. Started exercising arms with dumbbells (0.5 kg, 1.0 kg). Shoulders still numb and unresponsive, arms very weak but improving. End of November things changed and the next two weeks were spent in bed. My sister came for 4 days, first week of December, stayed in a hotel. I managed to get up for a couple of hours each day when she visited but it was a bit of a struggle. Writing Christmas cards was a struggle but I had typed up address labels and a letter which made it easier. Handwriting very difficult. Had to cancel hygienist appointment. Muscles in thighs have finally relaxed after being very tight since Sept 2013. More comfortable but legs now feel weaker. Spent Christmas Day in bed. Stood on a chair and my leg buckled under me when I stepped down. Fell flat on my back, not hurt, but got a fright. Have been in bed for most of December. Sad news from Australia, Michael passed away on 23rd December. I will miss him.
Not a good start to the year. January not a good month. Managed to walk up and down the hall quite a bit some days, other days not able to walk much at all. 5th Feb – called ambulance due to pressure on brain and lungs. Unable to help as oxygen levels normal. 8th Feb – phoned GP surgery/demanded home visit. GP visited, no real concern shown. Agreed to neurology referral. Woke up one morning and felt I had been hit between the eyes, wandered around in a daze for 3 days. Very distraught, suicidal at times. Eyesight blurred over. 15th Feb – phoned for ambulance again. Pressure on brain/lungs. Shouted at ambulance staff to get out of the house. 17th Feb – pressure on lungs shifted. Friends have visited quite a lot to give extra support. Optician came and retested eyes. Ordered a second pair of glasses. 21st – travelled to Dundee. 22nd – woken by jolt at back of my brain, saw neurologist, awful consultation. Denied the drugs had anything to do with symptoms. Ordered MRI scan, nerve conduction and blood tests. Would not engage in any meaningful discussion. 24th – MRI scan, coped well. Went back to friends’ house. 26th – pressure on brain more localised, like a thumb pressing down instead of a dinner plate. Massage on the relevant spot made breathing easier. Letter from neurologist upsetting – neurological functional impairment but too much focus on “depression”. Factual inaccuracies and erroneous assumption about early retirement. Email from Prof. (London) confirming that my symptoms are due to benzodiazepine withdrawal.
Had nerve conduction tests. Neurophysiologist agreed about the damage benzodiazepines can do but of course no opinion about my symptoms in subsequent letter. Tests didn’t show anything. MRI scan result rather vague. Non-specific findings possibly due to vascular changes, common in over 50s. Not reassured. don’t even know whether to believe it. Spoke to neurological physiotherapist on the phone, was very distressed, she was very nice and will come to see me after Easter. Lady came from social work department, very nice. Gave me some leaflets. Wrote to Dr Jon Stone, neurologist, Edinburgh re misleading information on antidepressants on his website. He agreed to amend his website but only added in a sentence. Left the rest unchanged!! Yet he said in his email that he treats patients damaged by antidepressants. “Medically Unexplained Symptoms” now being promoted by RCGP/RCPsych. 16th March – home care manager visited so agreed to home help two hours per week. 17th – had second eye test at home. Slightly different prescription. Ordered another pair of spectacles. Nutritionist came and recommended some supplements and dietary changes. Went for reflexology appointment by myself in taxis. It was difficult but I coped. 27th – made lentil soup, my first attempt at cooking from scratch. It was very difficult trying to dice the carrots. Very upsetting. Went to hygienist and felt awful. Friends were there and took me home. Went back the following day and coped reasonably well. 28th – two page spread in Daily Mail on antidepressants, hard-hitting. Marion Brown drafted petition to Scottish Parliament, spurred on by recent revelations about MUS. 30th – second reflexology session, coped quite well but painful. Seems to help feet and legs a little bit. 31st – new spectacles came, no use at all!!
Home help started. She will come once a week for 2 hours. This is a breakthrough for me. Before I could not really cope with someone coming into the house on a regular basis, I could only see people as and when I felt able and it had to be a last minute arrangement. Went to mobility aid shop with home help and bought a rollator (walking frame on wheels). A much better day, could feel emotions and had clearer thinking. Have detected some improvement in ability to read. Walking a little bit outside, round grass mainly. Walked half way round the complex but lost sensation in arms and hands. Very uncomfortable. Managing to make soup. First time I have been able to cook since Sept 2013.
Applied for disability benefits. Went to see my Member of Scottish Parliament. He was willing to help by writing to GP/Health Board. I asked him to wait until I have seen NHS neurologist. Saw GP and lost my temper with him. Totally disgusted. Cannot give an opinion, does not have the expertise. Went to optician. Took an image of my left eye, there is something there, excess fluid. I was in tears by the time I left, I could not take in what the staff were saying to me. Appointment came in for ophthalmology for early morning. Had a real problem trying to get afternoon appointment. Only got it when I said I would complain to Health Board.
Hurt my back and that made all symptoms worse again but just for a few days. Broke a tooth. Heating boiler not working so had to get engineer out. Had my hair cut at home. Went out with friends to garden centre for a coffee.
Petition to Scottish Parliament went live. Was due to be interviewed by BBC Scotland and Scottish TV. Prime Minister announced a general election so BBC Scotland cancelled. STV did short interview and got one minute slot on STV news. Hardly worth the effort. Wrote to National Institute for Health Research to complain about proposed clinical trial using benzodiazepines long term. After a few emails the link to the proposed trial was taken down!! Daily Mail published Pamela Wilson’s story and Scottish Sunday Express published article about petition to Scottish Parliament.
Saw another GP, does not want to get involved. I was angry and upset. Second referral letter to neurology has been written and referral made to physiotherapy but only after I had asked what was happening. It has taken three weeks. Contacted CAB for advice on NHS complaints procedures. Went to dentist and had broken tooth fixed. Unable to do x-rays because I cannot tolerate things in my mouth. Went for a coffee afterwards with friends.
Went to shopping centre with home help. Borrowed wheelchair. Quite weepy thinking of how I used to be and watching other people walking about, living their lives. Also went to garden centre and supermarket, using wheelchair. Walking a little better, managing to walk round complex but only occasionally. Have had a few visits from friends this month.
Went to see ophthalmologist, bleeding at back of eye. Was upset several times. Could not keep eye open, muscles very weak, could not follow instructions very well, could not take in what ophthalmologist was saying. Friends were there with me. Have to go back for another assessment. At next appointment was in clinic three hours. Images showed lesions at back of eye. Laser treatment recommended. Terrified of having a drug injected into me. Went for coffee afterwards with friends.
Went for bone density scan with home help. Did not feel well. Attended for physiotherapy assessments, NHS and private. Upset at NHS appointment because GP referral trivialised my symptoms and did not say what was actually wrong with me. Both therapists gave me similar exercises to do. Went for reflexology.
Scottish Sunday Express published again (Alyne Duthie). Spoke to Daily Mail journalist re Medically Unexplained Symptoms. Also spoke to Jo Waters, also at Daily Mail about my own story. Article was published 24th May, very hard hitting so I was very pleased. Scottish GP, Dr Des Spence, has spoken out against anti-depressant prescribing. Submitted my written evidence to Petitions Committee of Scottish Parliament.
Terrorist attack in Manchester at pop concert – many young people killed. Suicide bomber. Tragic. So upsetting.
Another terrorist attack, this time London Bridge. Three men with knives. Just tragic. General election – Conservatives failed to get overall majority, Labour Party did better than expected. So I am pleased. Tower block fire in Kensington, London, absolutely horrific.
Went for reflexology, very upset. Walked a little bit afterwards, had a coffee and got taxi home again. Better at next appointment. Went back to see GP, another distressing consultation. Offered a referral to psychiatry to discuss MUS. Laughed at him. Requested referral to David Healy. MHRA report atrocious, errors, omissions, misleading. GP said he didn’t have the intelligence of people like David Healy and Malcolm Lader. Went for a coffee afterwards with friends.
Went to ophthalmology again on my own. Was due to have laser treatment but I had decided against it. Run the risk of losing sight in my left eye if I do not have treatment so now I am very upset again and do not know what to do. Made appointment at private hospital for second opinion. So sick of all these medical appointments.
13th June – exceptional day – supermarket with home help, enjoyed it. Talked on phone to friends then another friend arrived unexpectedly from south of England. Stayed 3 hours. Cognition good and I enjoyed his company.
Went to supermarket with home help, didn’t feel well. Went to NHS physiotherapy – only managed one exercise, very upset.
Was invited onto Kaye Adams Show to speak about PDD on 20th June. Was rudely cut off by presenter. Complained and received an apologetic phone call a few days later. The stress caused me to be quite ill for a week. My birthday on 21st June – 63 years old, 4th birthday in bed. Wasn’t feeling so well.
More publicity ensued due to Petition Committee meeting on 29th June. Meeting went well. Was interviewed at home and clips were played on radio (twice) and TV news on 29th June. Coped well. Also interviewed for Daily Mail Scotland. Stayed up for most of the day, 4 days in a row. That is extremely rare so hopefully a good sign.
Physiotherapist gave me a wider range of exercises to do at my request. Was assessed for disability benefits. Went to see my MP. She didn’t seem very interested but I talked all the time!! Wrote an Open Letter to UK Depts of Health. Dept of Health in London continuing to refuse to fund a helpline. Had a few more letters published in medical journals. Had my hair cut at home. Referral to Prof David Healy turned down by Health Board. Furious. Watched Panorama – Prescription for Murder? GP phoned me at home, very friendly, had seen David Healy on TV. Set up a short questionnaire in Survey Monkey to gather feedback on NHS Choices and NHS111 for BMA to take to Dept of Health. Took part in RCPsych Q&A session on Twitter. What a farce, a PR exercise, not a genuine attempt to answer questions. Had a letter published in BMJ about it.