Sunil

Age at interview: 56

Brief Outline:

Sunil first became seriously depressed when he was a medical student and was eventually given ECT. He responded rapidly to treatment. Later he was diagnosed with bipolar affective disorder and has had relapses of his condition. Sunil has found that out of all the treatments offered, only ECT really gets him better.

Background:

Sunil is a Consultant, lives with his wife and describes his ethnic background as Indian.

More about me...

Sunil was born in Kenya and emigrated to the UK with his family at the age of 18. He had his first inkling that he had a psychiatric problem when he was still in Kenya, when he changed schools and worried he could not understand the lessons. He was taken to a doctor and prescribed sleeping tablets. In the UK, he found moving into self-catered accommodation a struggle and felt ill at ease in his fourth year when he found himself not with his peers after a year doing laboratory work. Sunil found himself in a situation where he worked in obstetrics and gynaecology and was “thrown in at the deep end”. Soon he became clinically depressed and this was recognised quickly by a teacher he had had from psychiatry. He was admitted to a ward away from the medical school he was attending and given antidepressants and responded quite rapidly. He was discharged after 4-5 weeks. The professor of psychiatry arranged for him to have ECT as an outpatient or as a day patient. He can vaguely remember being picked up in an ambulance to have ECT, but has very little recollection of this period. 

Eventually he completed his medical training and qualified as a doctor. He got married but his wife didn’t know about his major episode of illness when he was a student. Sunil moved into research in a laboratory based environment, researching HIV, but found the transition from taught syllabus to research daunting. He was also involved in a long commute between work and his family life. Sunil realised he was having ‘flights of fancy’ during a visit to relatives, and on his return told his wife, he became severely depressed. Sunil thought that it was around this time he was told he had “manic depression” (now referred to as bipolar affective disorder). However, he thinks that his care was grossly mismanaged as he had an under active thyroid and was prescribed thyroxine as a treatment. At the same time he was also prescribed lithium as a mood stabiliser, but one of the side effects of lithium is interference with the thyroid gland. During this time he had “several bouts of ECT” but can’t remember because of the memory loss. He thinks he must have signed a consent form but isn’t sure whether a form was needed that long ago (in the late 1980s).  

After this he qualified as a haematologist and became a Senior Registrar and then, became a consultant. Although his new position as a consultant was quite stressful, he has a period of being illness free for more than 18 years. He then had a prolonged episode and was off work for nearly a year. His wife knew his condition well, knew he didn’t respond well to antidepressants and asked the psychiatrist to give him ECT. After this, he was referred to a specialist bipolar service and attended a course called ‘Mood on track’. 

In 2012 he had the last serious episode. He was changed from his medication. He took carbamazepine during this period, which is an anticonvulsant medication. However, later he developed a very sore mouth. He was then put on Depakote (divalproex sodium) but developed osteoporosis and then olanzapine and lamotrigine. He believes that the change in his medication caused his latest episode. He has had two or three courses of ECT and in total had 39 ECT treatments.

Since New Year he has been on antidepressants and finds that he is very slightly hypomanic. He says that although his wife can cope with him if he is depressed she finds hypomanic periods more difficult. He now takes quiapine, mirtazpine and venlafazine (one mood stabiliser and two antidepressants). 

Sunil talked about the process of receiving ECT. He said he happened early in the morning after fasting before the anaesthetic. He says that the first thing you notice when you come around is being in a room with the other patients and being given some breakfast to eat. He felts a bit dazed and confused and ‘not fully with it’ but then had a sleep afterwards. He has says that the treatment has very little in the way of side effects and that suffering from long periods of recurrent depression, you are more likely to develop dementia and other conditions. 

Sunil sees ECT as treatment for severe depressive episodes, and he has agreed with his psychiatrist that if he gets this depressed in the future she will bypass antidepressants and go directly to ECT. He says that there are very large gaps in his memory, and sometimes he can’t remember the names of people he has known for years. He says that he used to worry much more about people at work knowing about his experiences, but he is no longer embarrassed or ashamed as he says that his illness is not something he invited. He thinks there is a particular stigma attached to ECT. Sunil is now very much looking forward to returning to work.

Looking back, Sunil realised there were “warning signs” of his mental health problems when he was at school. At the time he was given sleeping tablets.

In retrospect, I think the very first inkling that I had some psychiatric problem occurred while I was still in Kenya, because I changed from my ‘O’ level school to a different school to go and do my ‘A’ levels and this one happened to be one where my Dad was actually the Bursar, so he was a member of staff, but not teaching staff, a Bursar.

And whether I did settle down into the new school with largely a new bunch of fellow students I don’t know. But I went through a phrase where I felt that I didn’t really understand anything in the lessons. And it made me, in retrospect, quite depressed and also feeling as if I was inferior. To the extent that, the medical services aren’t very well developed in Kenya, so at that time I was taken by my Dad to a local doctor who was almost like the equal end of a GP in this country and I remember that all he did was prescribe me some sleeping tablets, which I can’t remember whether I even bothered taking or not, because I did have that much sleep disturbance.

But because of my Dad working… in the same school, he arranged for some of the teachers to give me extra tuition outside normal hours. But when we had the end of first term exams in my first term in this school I did actually very well, came almost top in all the subjects, and suddenly that seemed to be the one event that put me back into my normal personality of being very jovial and friendly and basically I recovered from that illness and I never perceived it as being a mental illness at that time. But as I said in retrospect, I think that was the very first warning signs that I had a problem.

Although Sunil was bipolar, he also had an under active thyroid, a possible physical cause of depression. He was given lithium for the bipolar, but thought this interfered with his thyroid problem.

And I personally think retrospectively that I was grossly mismanaged. And although the medics looking after me at that time may have realised that I suffer from bipolar illness or a condition which in those days used to be called “manic depression” which is the old name for bipolar. I was never actually explicitly told that you have got bipolar illness. In fact, I was actually treated with…no, even before being treated with lithium, they did some baseline blood tests which they would do on anybody with severe depression, and one of the things you want to make sure that there’s no physical underlying cause for it. And one of the things they check for is whether you’ve got an under active thyroid gland and the do a blood test called the TSH which is basically a thyroid stimulating hormone. If you’ve got a very under active thyroid gland which is a gland found in the neck, then your TSH level will be very high, because the pituitary gland in the brain will be raising the TSH level to try and stimulate the thyroid gland to produce the thyroid hormone. So I had a sky high TSH level, one of the highest they had ever come across, of over a 1,000 when the normal level is like single, single digits.

So I was put on thyroxine, replacement therapy. I was given the thyroxine hormone as a treatment. But despite that, they actually also tried me for a period on a drug called lithium. Which is used to stabilise the mood in people with bipolar disorder. And, I think one of the main, one of the very well-known side effects of lithium is interference with the thyroid gland. And, in retrospect I feel that keeping in mind they had already discovered that I had a severely under active thyroid gland, the one drug that they should not have given me is lithium. But I was given lithium.

Although Sunil found memory loss the most distressing effect of ECT, he can remember quite a lot of the details of the ECT treatment. Immediately after the ECT, when he was ‘not fully with it’, his wife was there.

And you were saying that you can’t remember a lot of the ECT treatment when you first had it, or even the consent process and so on. Can you remember a bit more about…

Of the more recent episode?

Yes.

Only a tiny bit more, because one of the most distressing effects of ECT is the effect on memory. To the extent that you know, there are very, very large gaps in my memory, and sometimes I can’t even remember the names of people whom I’ve known for years, and my wife continually, almost on a daily basis talks to me about something that has happened in the recent which I have no recollection of. 

So but I do remember being taken three times a week Monday, Wednesday, Friday by car, first thing in the morning before 8 o’clock across the city to the place where the ECT unit is. And then waiting in the waiting area with the other patients and then being taken through to the room where the ECT is given and being seen by the anaesthetist who gives you an intravenous injection of a short-acting anaesthetic which puts you to sleep and then you have your ECT. 

And the next thing you remember is you come round where you are in a room where all the other patients also who have ECT are having something to eat, and some breakfast, because obviously you had to be fasted in order to have the ECT because you’re going to have an anaesthetic, so it’s got to be done on an empty stomach, so you have a, you know, some toast or cereal or something after you come round.

And the first thing you notice when you come round is you’re actually sitting in this room with the other patients and being given some breakfast to eat.

And how do you feel then?

Well at that time you’re sort of a bit dazed and not fully with it. But luckily obviously, my carer is there with me, my wife. And then she brings me back home. And usually when I come back home after I’ve had ECT, I usually was allowed to have a kip, so I’d have a snooze for about an hour or two until I was then woken up.

Sunil mentioned his own psychiatrist had found research suggesting that severe depression that is not treated was more likely to cause dementia than having ECT.

But really to be very honest with you, apart from the effect on short term memory I think ECT is a treatment which is very, very effective and has very little in the way of side effects. I mean I did worry about whether there’s any long lasting effects of ECT like maybe brain damage or dementia or something like that, but my consultant psychiatrist has strongly reassured me that there is absolutely no evidence whatsoever that ECT makes you more likely to develop either Alzheimers disease or dementia, and in actual fact, she’s told me that’s there’s actual medical evidence, and published evidence, that untreated episodes of severe depression are much more associated with dementia than treatment with ECT. So if you don’t get adequately treated and you have long periods of recurrent depression which is severe, you’re much more likely to develop dementia.

Sunil finds now that he gets hypomania, though he is not sure if that is as a result of the ECT or the anti-depressants he is taking. His wife finds this very difficult and it has stopped him going back to work.

But I did find out, from my consultant and my wife that during this latest episode of illness which is now into its eighth month, just over seven months, I had a total of 39 ECT treatments which is a fantastically huge amount of ECT and my last ECT treatment was given on New Year’s Eve, and I’ve been reasonably well since the beginning of this year. But in actual fact whether it’s due to the fact that I’ve had ECT or whether it’s due to the fact that I’m on two different anti-depressants in addition to the ECT I have actually been a little bit on the high side. In other words slightly hypomanic. And never severely, but it has actually caused a lot of problem, because my wife can cope with me, no matter how severely depressed I am, and even if I’m suicidal she can cope with me. But the one thing she finds very, very challenging and difficult to cope with, is when I’m hypomanic. Because that’s when you tend to be more argumentative, and all the rest of it.

Anyway even if I’m only very slightly hypomanic, she finds that really difficult. And in fact the clinical psychologist I’ve been seeing, we’ve got a scale for people with bipolar illness where you actually monitor your mood on a daily basis and you grade it on a scale of plus five to minus five, with a middle zero being when you are completely normal mood, neither high nor low. Minus 5 is when you are in the depths of depression and plus 5 is when you are not just hypomanic, you are actually manic. Plus 5 is a very severe illness which requires hospitalisation. And I think in my estimation, even the highest that I’ve actually been in the last month has been only plus one no more than that, although my wife thinks I’ve probably been a little bit more than plus one, perhaps something like plus one and a half.

And that is the main reason why I’m not actually back at work yet. Because had I been given the choice, I would have actually gone back to work at least a fortnight ago. But I have actually now finally got a fit to return to work note from both my general practitioner and my psychiatrist. So hopefully the people at work will not really stop me from going back.

Sunil’s wife knew that anti-depressants didn’t work well for her husband and “begged” for him to have ECT. He says it is the only treatment that helps him when he is severely depressed.

Now when I had the episode in 2007, again it was a rather prolonged episode and I was off work for nearly a year. And during that time I was initially treated with anti-depressant for many, many months, and because my wife knew my illness very well by then, she knew that I don’t respond very well to anti-depressants, or I only either respond initially and then relapse, or the response is not ideal. It’s a partial response. 

So she really begged the psychiatrist looking after me repeatedly to give me ECT. But the psychiatrist was very reluctant and we went for many months without having any ECT. And me, just lingering and struggling along, until eventually I was given ECT again as a day patient, and again that was the only thing that finally got me better.

And after nearly a year off work, I was able to go back and resume my work.

Although Sunil no longer feels embarrassed and ashamed about his bipolar, he hasn’t told his large extended family much about it. His wife didn’t know about it until they were married.

With my wife, it hasn’t been a problem because basically once she found out when I had my first episode after getting married then I told her, to be very honest with you, even though I was a medical student, that episode of mental illness I had as a medical student, I did not at that time know that I had bipolar, nobody diagnosed as bipolar because at that time, I had never ever had a high episode, I had only ever had an episode of depression which the label was labelled as a “nervous breakdown”. And many people had nervous breakdowns and I did actually even perceive as depression, even though I had ECT and anti-depressants, and you know, as far as I was concerned it was something that happened in the past and was probably never going to happen again which is one of the reasons why I didn’t divulge it to my wife before I got married. But I think obviously in the early years, I think my wife was obviously aggrieved that she wasn’t given this information before we got married, but it hasn’t really damaged our relationship I’m pleased to say.

But in terms of family, well I’ve got a very medically orientated family because I’ve got one sister who’s not a medic, but I’ve got two younger brothers, both of whom are also doctors. My middle brother, the one younger to me, is a general practitioner. And the one, the youngest one is a consultant vascular and transplant surgeon. So basically my family probably understand about depression and bipolar and ECT just as much as I do.

But in terms of telling the extended family, it’s not something that I’ve gone, we’ve gone out of our way to advertise. Some of our extended family, of which there’s a very large family, they are aware that I’ve been ill, but they probably don’t know the details of what kind of illness I’ve had, and apart from people who find out at work that you’ve been off ill with a breakdown, I haven’t gone out of my way to tell people that I’ve got bipolar. And most people know that I’ve had mental illness which is why I have prolonged periods of time off work, but they don’t know, most of people don’t probably know that it’s bipolar. Although in recent years in the letter that my psychiatrist has sent to the workplace before returning to work, they have actually mentioned the diagnosis. So I’m sure some of the people at work do know. But it’s not something that worries me as much as it did in the past. I’m no longer embarrassed or ashamed to have this illness because it’s not something I’ve invited, it’s something I’ve been… afflicted with.

When Sunil was given antidepressants as a student in 1980 he improved quite rapidly. Later in life he was prescribed carbamazepine (for mood instability) that he felt kept him well for 18 years.

Now this happened a very long time ago. We are talking about 1980-81, and basically because I was a medical student, and because there were students from my own year still doing attachments to psychiatry somehow it was decided that it would be better for me if I wasn’t a patient in [name of place], because I would then have the embarrassment of being seen by my own fellow students from my year. So I actually got admitted into a hospital in a nearby neighbouring city about 20 miles away in [name of place] and I was an inpatient for about a month and I was given antidepressants. And I responded quite rapidly and I was discharged after about four or five weeks.

But then in the year 2007 after I’d been in this new job for about four or five years, I had my next or third bout of mental illness in my life. Now the actual gap between the second episode when I was a research registrar in [name of place] and me being the consultant in the second consultant job in the [name of place], I was actually illness free for more than 18 years, there was more than an 18 year gap between the two episodes. And one of the reasons that I was so well, was that towards the end of my illness in [name of place], one of the senior registrars finally decided to put me on a drug which was probably only relatively new in being used for bipolar illness it is anti-convulsant drug, which stops people having fits, but it was also thought to have a beneficial effect in stabilising the mood of patients with bipolar illness. And this drug is called carbamazepine which is an anti-convulsant. So carbamazepine kept me well for more than eighteen and a half years.

Although ECT has side effects, Sunil said medication can also have “serious adverse effects”. He experienced side effects from the mood stabilisers Depakote and carbamazepine, such as osteoporosis.

But going back to your question about the ECT I would say to the patients that actually ECT may have the side effect of interfering with your short term memory, but drugs are not without side effects either, and I have personal experience of developing a severe reaction in my mouth, a condition called ‘Lichen Planus’, which is probably attributed to previous treatment with carbamazepine and I have actually has osteoporosis with problems in my spine, all due to Depakote and I know that lithium didn’t do me any favours when I had under active thyroid either. So I mean I can quote at least three drugs that I have had which are used in bipolar to stabilise mood, all of which have had serious adverse effects for me.