10. Patient Stories: A long story of avoidable suffering

Introduction [KG]

This story well illustrates the long periods of unnecessary illness and suffering that many patients experience as result of the reluctance doctors exhibit to use these effective and safe older MAOI drugs.  Doctors’ attention is so diverted to all the shiny new stuff that is heavily promoted and advertised, including taking doctors on luxury five-star trips to foreign resorts — one correspondent recently told me his whole family was included in the trip —- I am sure the cost of that trip was greater than any holiday I have taken.

As this account reminds us, it is the experience of real people that is most important.  That illustrates why randomised controlled trials are not as ‘scientific’ as they are touted to be [several commentaries detailing with the scientific reasons why this is so, are in the ‘Bias in science’ section].

None of us need a statistician, or even a scientist, to tell us that a story like this demonstrates that MAOIs treat serious depression when all the fancy new drugs fail.  If this was just one story from the thousands that doctors experience, it could be put down to chance, but when one has seen hundreds of examples one comes to recognise the reality of patients’ experience, as opposed to the creativity and statistical juggling of RCTs.

I shall never forget the man, like the man in this account, who after a few weeks on Parnate was so hugely improved that he returned for his follow-up appointment with me and angrily banged his fist on the table.  I am sure many of my readers know what I am about to tell you —he said, ‘why didn’t some bastard give me this 20 years ago’.

Sadly, the answer is that doctors are indoctrinated and pusillanimous (such an appropriate and expressive word, right click on it if you do not know what it means) and therefore many do nothing except follow the guidelines*, and the guidelines are shaped behind the scenes by the pharmaceutical companies who wish to sell all the latest expensive drugs, however weak the evidence might be that they are of any use for serious depression.

The clinical trial enterprise is, in large part, a sick joke.

*If you wish to learn more about the disastrous influence of guidelines read the commentary about this, and the other commentaries in the ‘Bias in science’ section.

In his own words

This is the history of my struggle with depression and my cure with Parnate.

I am 62 years old, for 25 years I have suffered from, depression, low motivation, excessive rumination and regrets and poor sleep.  Despite this and through sheer tenacity I have a successful professional career.

I was best at work where the pressure of people needing my decisions, meetings, phone calls and emails kept me busy.

I started seeing a psychiatrist in 1996.  Over a period of 13 years I was prescribed numerous SSRIs and SNRIs, including multiple attempts with Zoloft.  They all gave me horrific side effects, including severe headaches, brain fog and made me lethargic and unproductive.  But mostly they just flattened my mood, (4/5 out of 10), not depressed but not happy, which is no way to live.  Two antidepressants made me suicidal.  I reacted badly to the SNRI, Cymbalta in 2008, very tired, hot and cold sweats, very anxious, couldn’t think straight, couldn’t talk to anyone.  I had to leave work early and had severe suicidal thoughts driving home.  These two occasions are the only time in my life that I have had suicidal thoughts.  How can Psychiatrists insist that MAOIs are dangerous, and these drugs aren’t?

[KG: he is correct, such assertions are illogical and erroneous and furthermore they fail to recognise or balance the suffering and risk of suicide, and also the frustration and distress of repeated failed treatments, against the small risk that is an inevitable accompaniment of all effective treatments]

In 2009 a different Psychiatrist diagnosed me as ADHD and prescribed dexamphetamine.  Up until now it has been the only thing that has lifted my mood, along with alcohol and nicotine.

Dexamphetamine lifted my mood, stopped my excessive rumination, and I felt confident and motivated and highly productive.  However, it only lasted for 3 hours.  After 3 hours I could feel the “fog coming down” and anxiety and depression increasing, and my negative thoughts started again.  I was then lethargic and unmotivated and couldn’t focus.  I couldn’t take it after 3 pm or I couldn’t sleep, and by 5 pm I was very depressed after the stimulant crash.  This led me to drink alcohol.  One alcoholic drink immediately lifted my mood but didn’t last and I think it caused me to wake up early stressed and anxious. 

In 2010 I started seeing a different Psychiatrist only to be prescribed more SSRI’s.  I tried numerous antidepressants with no success. In 2014 he prescribed me the antipsychotic, Rixadone [Risperidone].  It worsened my depression, gave me severe headaches and the withdrawal was horrific.  I now realize that an antipsychotic is the worst medication I could have been given as they lower dopamine levels.

I then started seeing doctors who specialize in natural medicine and was diagnosed with Pyroluria.  I was prescribed an expensive combination of vitamins which had no effect.

At this point I gave up on the medical profession and started seeing naturopaths and nutritionists.  I saw ten in total, they all had different ideas as to what was causing my depression.  I spent thousands of dollars on what I now consider expensive useless tests and expensive vitamin concoctions.  One convinced me to have all my amalgam fillings replaced, which cost $3,000 and was a waste of time and money.

Through one naturopath I did a genes test.  The test identified that out of seven MAOI genes I had a variation in five, which made my MAOI work faster and hence removes my neurotransmitters, including dopamine, faster.  This was the first time that dopamine had been mentioned to me.

In January 2018 I went back to the third psychiatrist.  I was prescribed a concoction of drugs, Brintellix (SSRI) plus Circadin (melatonin) plus Quilonum (lithium) plus Sodium valproate.  They worsened my depression, gave me severe headaches and terrible withdrawal.  I took them for two weeks, crashed and stopped.  It took me two weeks to recover.  I told this psychiatrist about my genes test, which he said was a waste of time only, to send me for a myDNA test which was to tell me if the drugs he prescribed would suit me based on my genes.  No doubt that test is promoted by the pharmaceutical companies.

In 2018 I was prescribed Valdoxan to help me with my sleep and depression.  I took it for 6 weeks; my mood was lower on average, and I had more depressed days.

Also, in December 2018 I saw a new Psychiatrist, he prescribed Vyvance.  One hour after taking it I could feel a strong buzzing in my brain, three hours after taking it I had a strong headache in the back of my head (I very rarely get headaches, except after taking antidepressant drugs), the back of my neck was sore, and it was painful to turn my head.  This scared me, wondering what it was doing to my brain.  I also felt dizzy and sick in the stomach every time I stood up or lay down.  My depression was much more severe and continued all day.  This continued for five days then I stopped taking it.  I couldn’t continue with it because I couldn’t function.

In February 2019 I saw yet another Psychiatrist.  I spent an hour explaining all my past reactions to SSRI’s and SNRI’s and at the end of the appointment he handed me a prescription, I looked at it and sat there dumbfounded, it was for Zoloft.  He also wanted me to have a radioactive dye injected into my brain and then have x-rays.  I did not return.

In March 2020 I started seeing another psychiatrist who specializes in treating ADHD.  He prescribed me dexamphetamine again.

From my own research, I surmised that I have biological treatment resistant depression and that low dopamine is my issue (low motivation, loss of interest in things I used to enjoy, sadness).  I believe this is supported by the fact that Dexamphetamine had been the only medication which has ever worked for me and dexamphetamine works by enhancing dopamine, and that alcohol and nicotine immediately lift my mood, both of which increase dopamine.

My research led me to Dr Ken Gillman’s web site (https://psychotropical.com/).  Dr Gillman is a retired Psychiatrist and clinical Neuro-pharmacologist who does research and published many scientific review papers in the field of neuro-pharmacology.  He is an internationally acknowledged authority on Serotonin Toxicity, and an expert on MAOIs, and drug adverse reactions and interactions, especially those relating to MAOIs, TCAs, SSRIs and SNRI’s.  Dr Gillman’s website is a wealth of knowledge with well referenced research papers.  He explains why the dangers of MAOIs can be easily managed and are much overstated in medical texts.  I put this down to the dishonesty of the big Pharmaceutical Companies who only want to promote their in-patent drugs.  Dr Gillman states that in his experience, patients usually have less side effects from MAOIs than other anti-depressants [KG that is supported by extensive patient surveys, done by both doctors and patients, where people have rated the side effects of different kinds of anti-depressant drugs].

I place a lot of credence on the experience of real people.  On the website “Ask A Patient” Parnate and Nardil are both equally ranked as the most effective anti-depressants.  SSRIs and SNRIs are way down the ranking.  There are multiple stories much the same as mine, with people who have spent years on SSRIs and SNRIs, only to have their life turned around by MAOIs.  There are also many stories of the difficulty they had in finding a doctor who would prescribe MAOIs.

The Psychiatrist I was seeing flatly refused to prescribe MAOIs for me.

I then saw another Psychiatrist (this is number 7) who after 3 appointments finally agreed to prescribe Parnate.  I believe that if I wasn’t so well researched and able to counter his arguments with quotes from medical research papers, he would never have prescribed it.  He repeatedly stated that MAOIs are very dangerous.  I countered this (information from Dr Gillman) that there are two dangers.  Firstly, the risk of harm from acute tyramine-induced hypertension.  Extensive evidence now indicates that the degree of transient Tyr-induced elevation of blood pressure is typically no greater than that associated with many common activities, including sports and other regular life activities.  The likelihood of elevated BP due to tyramine ingestion is substantially less now than in the past, because the amount of Tyr in modern foods is significantly lower. 

The second danger is serotonin toxicity, which is a real danger and can cause death, but it will only occur if a MAOI is taken with SSRs or SNRIs, and why would I want to take those drugs.  This Psychiatrist told me that his peers strongly recommended against prescribing any MAOIs.  I asked him how many of those peers have had firsthand experience with prescribing MAOIs and have knowledge in psychopharmacology or are they simply influenced by the outdated and often incorrect published information.  No response.

Psychiatrist No. 7 finally prescribed Parnate, but at 10 mg per day.  This would have been an ineffective dose, so I increased it to 30 mg, using the blood pressure tests described by Dr Gillman to monitor the dosage.  I am most thankful to this Psychiatrist for agreeing to try Parnate.

After 5 days on 30 mg Parnate my mood started to lift.  It has been life changing for me.  I have gone from wishing each day would quickly end, in the hope that tomorrow I will feel a bit better, to waking up positive and motivated and looking forward to the day.  How wonderful it is to enjoy simple things, a cup of tea, breakfast, noticing that it is a beautiful day, rather than just persevering with each day in a depressed fog.  I am enjoying my weekends instead of just waiting to get back to work, where at least I was under pressure and had to get things done and the day would pass reasonably quickly.  I had no interest in anything, I am now looking forward to the weekends and getting back into my hobby.

I have now been taking Parnate for nearly three months, and it is only getting better.  The only side effect I have had is on some days I am dizzy when I stand up quickly.  When it happens I take a couple of salt tablets and it soon passes.

My only regret is why a doctor could not have prescribed this for me 25 years ago, how different my life could have been. 

I think there should be a Royal Commission into Pharmaceutical Companies and the influence they have over the medical profession.

And to Dr Gillman I will be forever thankful to him for the information on his website and the explanations provided to me by phone and Skype.

Consider Donating to PsychoTropical

PsychoTropical is funded solely through generous donations, which has enabled extensive development and improvement of all associated activities. Many people who follow the advice on the website will save enormously on doctors, treatment costs, hospitalization, etc. which in some cases will amount to many thousands of dollars, even tens of thousands — never mind all the reduction in suffering and the resultant destruction of family, work, social, and leisure capability. A donation of $100, or $500, is little compared to those savings. Some less-advantaged people feel that the little they can give is so small it won’t make a difference – but five dollars monthly helps: so, do not think that a little donation is not useful.

– Dr Ken Gillman

Dr Ken Gillman