Medical History

My name is Ann and I live in Dorset, England. I was born on 29th December 1955. The following is a synopsis of the events during my life leading to an eventual diagnosis of Long "QT" Syndrome in October 1988. I was 14 when I became ill and 32 when the diagnosis was made.

Attending the S.A.D's Conference in London has prompted me to tell my story.

1.  On reflection, I believe that Long "QT" Syndrome was gradually manifesting itself during my childhood, although major symptoms did not commence until I was 14.
As a small child, I was very anxious and at some stage between the ages of 7-9 years, I was prescribed powerful tranquillizers. Aged about seven, I recall waking up on the floor beside my bed, but do not remember falling. I did however feel slightly strange. I also recall feeling dizzy during P.E. at school and everything "going black" during certain gym activities.

2.  When I was 12 years old I was in a large store with my mother and began feeling very faint. The lights began to blur and I felt sick so I went outside to get some fresh air.

3.  On Easter Monday morning in March 1970 (I was 14) I was in bed asleep and awoke with a start as I heard my Mother calling me. I rushed out of bed; my bedroom was near the top of the stairs. I collapsed and fell down the stairs where I remained unconscious for a while. I was incontinent of urine, sweaty, nauseous, and disorientated and my breathing was stilted. At the time, it was not known if I had fallen down the stairs and become unconscious or passed out and then fell. In fact, it was the latter and my unconscious state we believe, saved me from serious injury.
This was my first Seizure/Attack. It was Bank Holiday and the G.P. would come out, despite my Mother and Father ringing him. The Doctor on call was not available. His wife told my mother "pick her up and take her to Hospital". An ambulance was called and I was taken to Royal Victoria Hospital, Boscombe.Casuality Department. I felt so ill, weak, clammy and nauseous.

4.  I was seen by a Doctor who undertook neurological observations and ordered X- rays of my head to be taken I had concussion and remained in Hospital for about 48 hours under observation. I was then discharged and told to rest and do no close work for 6 weeks. Consequently, I remained off school.

5.  A couple of weeks later, I went to Southampton with my Sister and whilst there my heart began, pumping fast and I felt faint and very strange. Each time I moved or changed position, I felt worse. This had not happened to me before and I was extremely frightened. We returned home and the symptoms continued. I felt so weak every time I stood up from a sitting position my heart palpitated. I went to rest and this 
helped but I felt terrible and could not stop shaking.
6.  Soon after this, I went to my G.P. and I explained what had happened in as much detail as possible. He took my blood pressure and told me that I was re-living my accident and that my symptoms were psychosomatic. He then went on to tell me about a lorry driver who had re-lived his accident and I was doing the same. Following this, I recovered for a few weeks and then returned to School for mornings only.

7.  In August 1970, I had my first "Attack" in bed. It was 9am Sunday morning; I had been dreaming about falling downstairs, awoke with a start and went straight into an Attack. My heart began thumping and beating so quickly. It felt as though I was "hanging on for dear life". I was over-breathing and gasping for air. My head was thrown backwards and I passed out. My sister shared a room with me and she witnessed all this. The G.P. was called. I felt as through I had been spun round and round incessantly, had vomited with horrendous pain behind the eye, back of the head and base of spine. I also felt so dreadfully sick. I told my Doctor about all this and he took my pulse and blood pressure, looked at my eyes and then told me to rest. He said if it happened again he would make arrangements for an E.E.G. I was prescribed Valium 2mg three times daily. Once more, I remained off School.

8.  I had a further Attack in September of that year which I reported to the G.P. He told me he would arrange for me to have an E.E.G. but he added that these were not always accurate. I had to attend the local Mental Hospital, St Ann's, as E.E.Gs were not available at the General Hospital in those days. The E.E.G. showed a slight abnormality and consequently I was referred to a Neurologist at Royal Victoria Hospital. He told me that I had Epilepsy and prescribed Mysoline Phenobarbitone and Epanutin and told me to continue the Valium. I was only just about capable of going to School. Diuretics were also prescribed and these affected me adversely. I could barely walk upstairs and felt constantly ill. At weekends, I was more susceptible to Attacks. Sleeping always induced Attacks usually sparked off by some kind of noise.

9.  I could not do P.E. at School and became generally aggressive. I often hit out at my Mother and objects within the house. My Mother became increasingly concerned.

10.  The second time I attended the Neuro Clinic, I saw a Registrar who was very unsympathetic and practically laughed at me when I said that I did not really know what was happening to me during an Attack. A further E.E.G. was arranged for before Christmas that year. This showed no abnormality but the diagnosis of Epilepsy and "cocktail" of medication continued. I was like a zombie and only six stone in weight. I was petrified of going to bed. At times, I fell asleep on the landing and had to be carried to bed by my Parents. I was terrified of going to sleep, as I knew this would precipitate another Attack. The Attacks were almost daily and my G.P. was aware of this. My Mother wanted me referred to a London Hospital (Atkinson Morley, I believe). She was sure I did not have Epilepsy and kept pressing the Doctor about this. Attacks occurred not only when waking from sleep but also during emotional upset. If the doorbell or telephone rang and I was sitting watching television, I would pass out. Something emotional on the television made me pass out also. Being "at rest" seemed to make the problems worse, so I just kept "on the go".     
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11.  At one point the Doctor visited the house and wanted to arrange for my immediate admittance to St Ann’s (the Psychiatric Hospital). My Mother was appalled at this suggestion and my G.P. replied “well, what else do you want me do”. The Doctor wanted me admitted because of the violence and aggressiveness. He then suggested that I see a Psychiatrist. 
Consequently, I saw a Psychiatrist at the Hospital annexed to the Royal Victoria Bournemouth. I attended in my school uniform on my way to School aged 16, and after no examination the Doctor told me I definitely had Epilepsy and that I must not to learn to swim or ride a bike and that my life would be considerably altered as a result. I was shocked by his unsympathetic manner and cried. He then prescribed Ospolot, which my Mother was warned could make me worse or slightly better. These affected me adversely. I could not eat and was extremely weak physically. I managed to attain a few “O” levels but my Mother was growing increasingly concerned about my health and asked to see the Doctor again. She was so frustrated that she went to St Ann’s and spoke angrily to the head of the Hospital, saying that enough was being done and that no thorough examination had been conducted. The Doctor was furious that my Mother had taken it upon herself to question the treatment provided. To make matters worse a Social Worker arranged by St Ann’s visited the house and told my Mother that they thought I had Schizophrenia. I was by now numb and lived my life aimlessly. I continued to se my G.P. and two Psychiatrists.

12.  At some stage I was given a Barium Meal because of violent stomach cramps and upsets, etc, it was thought I had an ulcer. I did not and later learned that gastric disturbances were a side effect of the drugs.

13.  I visited another G.P. and told him about my heart and that I felt weak and faint. I was told to cut down on the Valium as they can lower the blood pressure. I was taking about seven Valium per day.

14.  Attending School was very difficult, I went only part-time. I studied half-heartedly for “A” Levels but was too unwell to take them. Our Parish Priest visited the house at the weekend once and could see the state my Mother was in and insisted that a G.P. be called. He telephoned the Doctor himself and consequently another Doctor came out who was on call. This Doctor was very kind and referred me to the Burden Neurological Institute in Bristol, a centre of excellence in Epilepsy. I visited a Neuro Psychiatrist and Specialist in Epilepsy. Shortly after I was given a thorough neurological examination and an extensive E.E.G., which revealed that, I did not have Epilepsy. I was told the Attacks were terror/panic and that I also had Migraine. The Specialist said, “Whoever was responsible for this Lass has much to answer for”. He wanted to reduce my medication but wanted me admitted to Hospital to monitor this, but I was too scared. I was weaned off the medication at home and my Sister took time off work to help. I experienced “cold Turkey”. I was left on 40-50mg of Valium and a slow release Phenobarbitone at night. It was noted that I was under- weight and suffering from sleep deprivation.

15.  Once the intake of medication was reduced, the aggressiveness died down but the Attacks continued and I was still in a terrible state of fear. My appointments with this specialist were approximately every three months. Every time I went to Bristol, an E.E.G. was undertaken but in 1975, he decided that there was nothing more he could do for me and I was left in the hands of a local Psychiatrist. He offered me strong anti-depressants, which I refused. During the 1970’s at some point, the Doctors wanted to perform Pyscho-Surgery believing that it would help matters. Thankfully, this did not take place.

16.  Between 1975-1980 the G.Ps continued to say I would “grow out of it” but the Attacks continued relentlessly and I could seek no solace from the misery. Nearly every morning when I awoke I had “near death” episodes (as I eventually found the Attacks to be). Sometimes, through sheer exhaustion from one Attack I would fall asleep and have another. Often I would lay all day in agony of pain behind the eyes, neck and spine and being sick. I was desperate to rest properly and sleep but I just kept myself awake. If I had an Attack during a period, the pain in my stomach made me cry out and I was almost “biting the pillow”. The pain was excruciating. Somehow I would make it through the day but I would pass out in the evening too.
There only had to be a knock on the window, the telephone or doorbell ringing and I would lose consciousness. Despite all this, I was expected to be getting on with my life. On one occasion when I collapsed during the evening, we rang the G.P. to relate the symptoms explaining about the horrendously fast heartbeat. I was told to take Valium and go to bed. The Doctor did not come out. I thought about the Attacks every moment of the day whether inside or outside the house.
I took myself slowly off the Valium when I was about 22, taking just a small amount 5mg at night. 

17.  In the summer of 1980 when I was 24, a friend witnessed an Attack early one morning and at his instigation, I went back to my G.P. The friend came with me to the Doctor in October, having previously written a very profound and eloquent letter to him describing what he had seen. He told the G.P. that I looked as though I was being strangled or alternatively that I was having a cardiac arrest. He explained that my eyes were fixed and staring and that my face was blue; that this happened during the drowsy stage of waking up when any touch or noise would cause my heart to beat rapidly. My Doctor replied that this could happen to anyone if they over-breathed. My Cousin also witnessed a collapse and wrote to the Bristol Specialist, describing what she saw. As a result, I was referred back to Burden Neuro and I was given an appointment for December 1989. They prescribed a small amount of the Beta- Blocker Propanolol because of my description of heart symptoms. This made me feel very sick and did not prevent the Attacks. I discontinued these tablets with permission from my G.P.

18.  In January 1981 I suffered a nasty bout of Glandular Fever and I was very poorly with this. My Attacks/Collapses worsened at times and still I could not rest properly. Even a light switch being turned on could precipitate an Attack.

19.  By December 1982 early 1983, I agreed to go to Burden Hospital for tests. I wore electrodes on my head and specialist ambulant E.E.G equipment 24 hours a day. I had a couple of Attacks whilst in Hospital, but these were not observed. I was told that during these episodes the E.E.Gs showed “stress”. Five days after admission I decided to ask to leave and discharged myself with permission. The Doctor was angry about this and wanted me to stay longer. He was very aggressive towards me and told me I was “feeble minded, weak and pathetic. I was naturally upset by this but would not break down in front of him. 
On my return from Hospital, I travelled by coach and during a stop I ran to telephone my Sister to tell her we were on our way home. As I ran, I collapsed and fell to the ground unconscious. I sustained quite a serious injury to my face and was given stitches and subsequent plastic surgery for my nose. I was taken to the Casualty Department of Salisbury Infirmary. The Doctors and Nurses asked if my G.P. was aware of these Attacks and I explained that I had just come from Hospital in Bristol. When I collapsed another passenger, a nurse, said that when I fainted she could not feel a pulse. The Specialist was informed early the next morning and given all the details. He dismissed it as an ordinary faint.

20.  During the week that followed, I was weak and collapsed virtually each time I stood up or moved. I went to see my G.P. but even with black eyes, stitches and a swollen face that looked as though I had been through a car windscreen, he remained rather unperturbed.

21.  In October 1984 the Neuro Psychiatrist told me that he was retiring and agreed that a fresh insight into my condition may help After my final visit to him I received a letter stating that I had symptoms similar to “Startlers Syndrome” and was prescribed Clonazepan. This made me feel very strange and sick and I remained on it for only a few days. I was very wary of any drug that was given me and was hesitant to use it.

22.  I commenced my first full time job in 1984 at the age of 28 as an Auxiliary Nurse at Christchurch Hospital, Dorset. I had previously tried for a number of years to obtain an Auxiliary Post but could not even gain an interview. I also applied for S.R.N. training in early 1980s but they knew of my past employment record and that I suffered with “Hyperventilation”. My G.P. had written references for me, which stated that I was experiencing “episodes of over-breathing, probably to gain attention from her Parents”. In the end to get any interview/job, I omitted the truth about health problems. 

23.  In September 1984, three months after I started work, I collapsed in the Hospital Canteen. Thankfully, it was dismissed as a faint. At about this time I was so desperate that I began to seeing a Hypnotherapist. At the end of that summer, I had a massive Attack one morning at about 6 am. The Attack was horrendous and during this episode, I fell out of bed smashing my face. I had two black eyes and cuts to my face. I went to Casualty and was examined and X-Rayed. I was petrified that my employers would find out about this and I did not want to lose my job. I was off work for a few days and told them I had fallen off my bicycle. When I went back to work, I was still woozy, bruised and unwell.      
  
24.  I had begun to keep a record of Attacks and I sustained hundreds during a four-year period. In one year alone, I recorded 65 and these were only the ones I had written down. The Attacks increased during times of stress and exhaustion and many during severe episodes I was incontinent. I was 29 and physically and mentally devastated.

29.  I first saw a new Doctor at Burden, Bristol (the replacement) at the end of 1985 when I was 29 and another E.E.G was taken. In January 1986, I saw him again. I started S.R.N. Nurse Training in May 1986 and again in November 1986. He told me that I definitely had “Startlers” Epilepsy. I was confused and angry. The Specialist had said that I originally did not have any form of Epilepsy. By October 1987, he did not want to see me again. I took a break in Training and returned to Christchurch Hospital for six months as an Auxiliary Nurse. The Attacks continued. My Mother was on the verge of a nervous breakdown. I left my job at Christchurch in June 1988 to continue training in July with another set of Student Nurses.

26.  During this time I had further serious Episodes, at one point passed out in the bath when the telephone rang. It was terrifying and soul destroying. I went away for a few days to the Isle of Wight with the friend who had witnessed the bad Episode back in 1980. This time I collapsed in a Car Park and was taken by Ambulance to Ryde Hospital. My blood sugar levels were tested and were rather low. I had not eaten properly all day. This was not an ordinary faint. I was discharged and given a letter for my Doctor. My heart was palpitating badly as usual. 

27.  I returned to my Nurse Training for a few days after this and collapsed on the Ward. Apparently, I went blue and my pulse was virtually non-existent. When I regained consciousness, I was taken down to Casualty. My blood pressure was taken lying down and then standing up. It dropped to 90/60 when I stood up. Blood sugar levels were fine and yet again, I was given a letter for my G.P. whom I saw later that day. I gave him the two Casualty letters and he referred me back to Bristol at the same time saying that he did not feel that this would be of benefit and if it were not, he would refer me to the local Psycologists.

28.  I received an appointment to return to Burden- Neuro Institute some time during July 1988. When I attended the appointment this time the Doctor the was much more attentive. He had three medical students with him. These Doctors “listened” to everything I said. I was given a thorough examination and asked if I had ever seen anybody on the general side of medicine. They told me that because of the emphasis on heart symptoms, they wanted me to see a Heart Specialist. I was stunned. This was 1988; 18 years after my symptoms began. These Doctors were sure I did not have “Startlers” Syndrome, that my symptoms were not even remotely similar. The Doctor told me I remained a total mystery to them. 

29.  A few days later I went to the G.P. and a letter from Bristol had arrived. My G.P. was on holiday and I saw another member of the practice (I had only seen him once before). After reading the letter, he told me that it was NOT necessary for me to see a Heart Specialist. He listened to my heart, told me it was normal, and questioned why I was even off work. He said he would tell the School of Nursing all about the situation, i.e. that there was not anything wrong with me. He arranged for an E.C.G. to be taken at the Surgery I did not attend the appointment. I was livid. An E.C.G. taken at the Surgery would have been dismissed as normal. I waited for my G.P. to return from holiday and he told me he would refer me to a Specialist at Southampton Hospital. A couple of weeks later, I telephoned the Hospital to find out how long I would have to wait for a non-urgent appointment. I was told a few months. I would not accept this and returned to my G.P. He told me he had heard of a new Heart Specialist, Dr Rozkovec at the Royal Victoria Hospital. I was given an appointment for late September.

30.  I attended the Royal Victoria Hospital and was given an E.C.G. and chest X-Rays. This was the first time I had even been given an E.E.G. in 18 long years. The Consultant listened to my story, asked various questions and gave me a thorough examination, He then arranged for me to wear an ambulant E.C.G. monitor for 72 hours in the hope that an Attack could be “captured”. I had two Attacks, one after the other. I returned the monitor to the Hospital and then received a telephone call. The Consultant wanted me to be admitted immediately. Prior to this, I believe the Staff Nurse who had seen me collapse on the Ward had given Dr Rozovec an accurate description of what she had witnessed. It was thought to be cardiac. 
I went into Coronary Care but could not really believe what was happening. For 18 years, I had been told to get on with my life and now I was told that they knew what the problem was. Two Attacks or “Torsade” on the monitor. It seemed strange to me, these were not even the worst Attacks I had experienced, and they were just two nasty Episodes that were an everyday occurrence. I was attached to a monitor and watched closely by the Nurses. I had routine tests and after five days was sent by ambulance to St Georges Hospital, London under the care of Professor Camm and his team. I stayed there for a further three weeks and was given very intensive tests including Electrophysiological Studies. 
I was told that I had have Long “QT” Syndrome and the rhythm my heart was going into before an Attack was “Torsade de Pointes. Doctors told me I was lucky to be alive. My G.P. did not know HOW I was alive. At a later stage, Professor Camm said that I must have some sort of self-correcting mechanism that “bought me back”. The Attacks were “near death” episodes. A few years after diagnosis I found out that the Doctors knew only of one other person who had the condition as badly as I did and she died when the telephone rang.

31.  St George’s prescribed 100mg of Atenolol, a Beta-Blocker but I felt so ill on this amount that it was reduced to 50mg. I was told that if I did not respond to the tablets I could have an operation known as Left Stelate-Ganglionectomy.
I was discharged on 50mg Atenolol. My quality of life improved immediately (although at times I was “symptomatic” in response to noise) but this was nothing to me after what I had experienced. I did however collapse in 1992 when in bed. This was when my Father died of Cancer in November of that year. A few years later, my drugs were increased to 75mg. 

During the years that followed my Mother became very ill with Multi-System-Atrophy a rare neurological wasting disease. She also developed behavioural problems, which required me to give her 24-hour care. In May 1998, she fell over one night in her bedroom. When I went to lift her off the floor, I collapsed on top of her unconscious. It was a terrible episode. In September of that year, I was fitted with a Medtronic Pacemaker at St George’s. My Mother died of her disease in April 2002.      
To date I take 75-100mg Atenolol and still got the Pacemaker insitu. 
 
I shall be greatly indebted to Professor Camm and Dr Rozovec for the rest of my life for saving me from the “hell on earth” that I was living in.
Dr Rozkovec asked my Mother two questions when making the diagnosis. Did I go blue all over facially during an Episode (in Epilepsy, people are blue around the lips) and were my limb movements rhythmic/in control? (In Epilepsy, movements are uncoordinated). The answers were, yes to both these questions. These two questions and one E.C.G. gave the Doctor a good idea of what the problem was. 

I wonder even now in the 21st Century how many people are dead, in Psychiatric Hospitals, treated for Epilepsy or undiagnosed and living with humiliation, trauma and suffering that this can bring. 

It simply should not happen.

Ann Theresa Hesp.  

2001

It is now July 2006 and time to bring this synopsis up to date. My life has gone on, but not in the way I would have wished. As I have said, I lost my Parents, Father in 1992 and Mother in 2002 and being single, I live alone.
April 2004 was traumatic, the evening meal was cooking and I was sat engrossed in a television programme and remembered with a start the boiling pans. Going quickly to the kitchen, I felt that old familiar sensation in my head and heart. I collapsed, and lost consciousness. When I "came around" I should have phoned for an ambulance but could not face the drama, I rang my sister and she phoned some friends who came to my assistance.
St George's Hospital were contacted the next day and I attended Pacing Clinic the following Monday. My Pacemaker was interrogated and it was arranged for me to see Professor Camm that afternoon. Apparently, I was unconscious for 39 seconds with a heart rate of 200 bpm and I had, had two events.
Professor Camm said I had been lucky but if it happened again, things could be different he therefore advised I have an I.C.D (Invertible Cardiac Defibrillator) fitted and that I increase my Atenolol to 100mg.
The I.C.D. was fitted by St George's Hospital in July 2004. A couple of months after the I.C.D was fitted, St George's informed me my I.C.D. was one from a faulty batch, it would seem a battery fault had caused some to fail. At present, I have to check my I.C.D. daily with a magnet and attend St George's every 3 months for check ups.

Therefore, overall it has been an interesting time, being on my own it has not been easy but I am blessed with a loving and caring sister. Cathy and her family have been a constant support and along with my dear friend Pat and his family I realise how lucky I am.

Ann