Editorial Note: This is Part 2 of The Tell-Tale Heart. It fits into a sub-series about Pharmaceuticals: Rape and Consent. It also maps straight on to Antidepressant Withdrawal: A Prozac Story and Saving Grace both of which are on RxISK. Saving Grace picks up the Bipolar theme running through Tell Tale Heart.
For the record, there is no question but that citalopram and escitalopram have significant effects on the heart, and astonishingly almost none of these are at present understood. We talk about QT interval changes but even these are not understood. There are EKG – ECG – cardiogram Apps but not one that can handle some the problems SSRIs cause. Someone who could design one would help a lot of people.
After 6 months my GP suggested coming off the antidepressant again. I had learned a little about tapering by then and asked to be referred to Addaction. Maybe I was addicted.
Addiction was added to my file notes… another nail in my coffin, as addiction, I later discovered is often considered to be co-morbid with SMI – Serious Mental Illness. My GP referred to it as “chemical dependency”…. but addiction was the only thing that appeared in my notes.
My GP wanted me off the antidepressants quicker than the 3 month taper I had researched through an online support group called CITA. However, she prescribed drops and tolerated my request to do it slowly.
Addaction were very helpful and supportive but knew nothing about citalopram. They researched withdrawal but found no advice. We were in the dark and followed the withdrawal charts I had downloaded from CITA.
I went through the tapering without too many problems until I got to the final few drops, then all hell broke loose. I dispensed with the last few drops and braced myself. This was a big mistake. I should have re-instated and stabilised instead of giving up on the taper. There was no advice available.
Withdrawal kicked in with physical as well as emotional symptoms. Profuse sweating, jaw clenching, no saliva, leg jerks, brain zaps, blood sugar feeling like it cleared too quickly leaving me shaking and sweating. An awful confused dream processing with images whizzing through my head kept me awake and I had unbearable restless legs.
This will Help…
After a holiday in the sun, where I was unable to leave my hotel room, and was taking diarrhea remedies to deal with the blood sugar problems, I begged my cardiologist for help. “Ah yes,” he said, “this is the fainting condition. A corticosteroid will sort that out…just one tiny pill….” I asked about withdrawal being the cause and was told that the antidepressant had cleared my system long ago and it was impossible that it’s impact could be felt due to it’s half life. Therefore this could not be withdrawal.
He placed me on the steroid… and admitted me for a pacemaker implantation.
On the corticosteroid my mood plummeted as it built up in my system. I became slightly puffy and moon faced and then seriously depressed. This time it really was depression. I became convinced I was dying and couldn’t stop crying. I made memory boxes for my children and kept telling my husband about my wishes for a Dignitas type death.
My GP referred me for CBT as I wouldn’t take the antidepressant again. I got 9 sessions and was discharged in the same state. It was a complete waste of time and it added to my misery.
After the pacemaker operation I was in shock, tearful and repulsed by the new lump in my chest. There was a long scar. I felt disfigured and violated and couldn’t come to terms with it, although everyone kept telling me it was a marvelous device keeping me alive and I should be grateful. I didn’t feel grateful at all.
I recovered at home then went back for a check up. My pacemaker had automatically changed setting to a more aggressive form of pacing. The technicians pronounced this wrong and dangerous for me and re-set it, saying it shouldn’t have happened.
After being interfered with again, something couldn’t cope. On arrival home I couldn’t co-ordinate my limbs to walk and the stiff legs returned and Parkinson type jerks came on. I became tearful and afraid and we rang the pacing clinic. They pronounced my symptoms “impossible” but changed the setting back to the original more aggressive pacing, writing up that the new pacing didn’t appear to “suit me”. The physical reaction was ignored and written up in my notes as anxiety.
The aggressive pacing was left in place for 5 years and a condition which should have been paced 2% of the time, was being paced over 80% of the time by the end of this period. I was becoming pacemaker dependent… but no one would listen to me as that “bipolar?” comment had found it’s way through to all concerned.
In the midst of all of this I was still trying to contest my diagnosis of a fainting disorder and asked for a referral to the autonomic nervous system clinic in Paddington to have the diagnosis challenged. My GP agreed, as he didn’t think I should be on the steroid… probably because “bipolar?” was in my notes.
I remember being terrified in the tunnels of the London Underground travelling down to the appointment and having an anxiety attack on the station. Just 10 years previously I had lived in London and had traveled on the underground daily in my sales job as a confident young woman. What was happening to me? I was a nervous wreck, jumping at my own shadow.
I had two negative tilt table tests at the clinic and the professor suggested that my diagnosis was wrong. It was probably a cardiac problem. His letter to my doctor was full of sarcasm regarding my account of my symptoms such as “paresthesiae, burning sensations” etc. The emphasis, again, was on delusions concerning my mental health and this overshadowed everything else.
My GP agreed that I should come off the steroid. I did so and the depression and thoughts of death disappeared as the drug cleared from my system. But the delusions were now in my file along with health anxiety relating to drug use… another nail in the SMI coffin.
My life outside medicine was in bits by then. My husband had lost his job and his shares had plummeted, his father had died and his mother was in a care home. We were trying to live on a pittance and an overdraft against our house. My son developed school phobia and I suddenly couldn’t cope anymore feeling I was to blame for my son’s problems….which I probably was as my behavior on the steroid must have frightened him, coupled with the heart admissions.
At some point, I became suicidal and made plans. Everything was my fault – I was a hopeless mother, I had failed and I was doing more harm than good being alive. My husband discovered the stash of razor blades and drugs and took me to the GP who prescribed the same antidepressant again. “It can’t hurt you this time” the GP patronised,” because you have a pacemaker”. I reluctantly took it as I knew there was no choice.
After 6 months I came off it and again had withdrawal symptoms and roller coaster mood swings. I think there was one more bout of suicidal ideation after this and I had been experiencing hypervigilance and paranoia when anxious. I asked for a referral to psychiatry. This suicidality, roller coaster mood swings, and paranoia was not normal for me and was becoming too frequent to be ignored. My GP agreed.
After a few sessions, I was told that the psychiatrist and my doctor had already decided what was wrong with me, it was just a question of time. Every letter following my psych appointments pulled out evidence to support a diagnosis of SMI….detailing “dramatic behavior”, the suicidal ideation, health anxiety etc. All I remember was sitting there, feeling out of it and worrying that I was like my father. I was told they were considering two serious diagnoses… and I joined up the dots and panicked.
I was having private psychotherapy at the same time, and that Achilles heel from my past, and my suggestibility had come up. I was working through those issues and realizing where I had gone wrong – seeing patterns of behavior that I was misinterpreting as hereditary mental illness.
My sons and husband had decided by then that I was quite mad. They wanted me medicated and safe. According to them. the therapist was putting nonsense in my head and validating me, when he should be listening to my doctors. I resented them all bitterly and withdrew to an online mental health forum for support.
I found a group of MH patients online who were far more knowledgeable than me about withdrawal issues and who put me in touch with another doctor, who saw me without a referral. I was afraid of seeing another psychiatrist and worried myself to distraction. But I needn’t have worried as he understood. He cut through the crap and saw what was happening. This was a turning point for me, and I will be eternally grateful for someone in a position of “knowledge” intervening and helping me fight my corner.
My doctors were not so grateful and branded him “out for his own ends and using me as a tool in a fight against the pharmaceutical companies”. I disagreed.
On my therapists advice I withdrew from psychiatry. He felt that I went backwards every time they suggested hereditary SMI as the cause of my issues and this was the cause of my problems. That psychotherapist was right! I never went back… but the self doubt was hard to shift.
Feeling slightly more validated I sent off for my father’s notes and discovered that he was diagnosed with personality issues and reactive depression. This made sense as he had been brought up by a step father who was a Polish Jew and had fought in the world war. This man had resented my father as a stepson and his upbringing had been very difficult as a result. I began to unravel my beliefs about hereditary MI.
Listening Against Me
I complained to my GP about being placed on psych drugs and misunderstood withdrawal and obtained copies of my notes which were full of inaccuracies. It was then that I discovered the “bipolar” comment which had been read by all who treated me. I began to realize that I had not been taken seriously for years.
I requested a re-diagnosis of my heart condition. This was translated as “health anxiety” again as my doctors maintained that I had received a full and comprehensive investigation previously. The consultant used the opportunity to gather information… supplied by me…. and placed it on file under relevant psychiatric history / reactions.
Apparently, I was delusional (whilst on the steroid), the dream disturbances I had experienced in withdrawal were hallucinations and I had experienced paranoia. I clearly had health anxiety regarding psychiatric drugs and my notes showed marked episodes of depression and relapses. I had reacted to small doses of antidepressants and steroids which was indicative of bipolar disorder and there was evidence of mental illness in the family with my father and my son’s school phobia.
I tried to go back to work but was told that I may have a hereditary form of mental illness and my GP would only sign me off part time. “Do you think I’m too dangerous for a classroom?” I asked.
I withdrew again, afraid, misunderstood and with a huge amount of self doubt. No one would back me up or believe in me. I felt hurt, angry and abused by a system that would not admit it’s own shortcomings or be open minded about drug side effects and expected me to accept a serious mental health diagnosis because as my GP said, “so many professionals could not be wrong”.
All this, when I had been dismissed by psych services after just two sessions of counselling 10 years ago with no significant symptoms or need for help apparently!! This did not add up.
We Mark our Destinies with our Fears
Although my logical brain tells me that they cannot diagnose me with anything, I am terrified to go to the doctor now. Terrified to ask for help if I have heart symptoms for fear of them being diagnosed as health anxiety and terrified of what lies ahead with my heart condition which is still being treated as a fainting condition 6 years on despite no fainting during the intervening years and no drugs to prevent fainting either.
I have lost many friends, my dignity and my self-confidence. I have deep rooted fears surrounding hospitals. I nearly lost my husband’s respect and my marriage when I became suicidal and I have had to battle to regain the trust of my children, who lost all respect for me too as I fell apart whilst in withdrawal or on steroids. I worry about the effect on them.
I will never visit another psychiatrist and I will never take another psych drug or steroid unless I become suicidal again, which I think is highly unlikely now that I am two years drug free and back to the relatively calm and stable person I originally was.
Worst of all though is the specter of that SMI diagnosis. It probably won’t happen now but it still frightens me to know that there is evidence on my file. What if I become unwell or confused in later life or the menopause throws up depressive symptoms… will they pluck it out of my file again? I need to put it behind me… but that’s easier said than done.
They say that history within families repeats itself. Maybe this is true if you allow it to and buy into hereditary mental illness as a possibility like I did. It can become a self-fulfilling prophecy…. but that’s nothing to do with genetics really is it?
We mark out our own destinies sometimes with our fears…. and that’s where I went wrong.