LOST IN SPACE

That was my life for a decade and I was literally lost in space. When I reached out to open a cupboard door I had to stab at it a few times before I connected. And then there were times when I slammed my fingers in drawers because I could not think to move them. Those were the little things but there were big things, too.  I walked into large structures like sundecks and construction scaffolding. Yet even those bangs on the head did nothing to knock sense into me. But these problems did not compare to my lack of common sense. When I met a friend for coffee she was worried that I was going to wander out in traffic and she had to grab me so I did not step off the curb in front of a fast moving car.

However, being lost extended beyond my perception on my body. I was lost in time, too. I was in bed half of almost every day –mostly sleeping but sometimes in a semi-comatose state. Even during my awake periods, I existed in a fog and I was constantly “veggied out”… For instance when I was toasting bread on my broiler I could not stay focused on the task. My mind was like a computer whirling around in a loop – lost in space and not coming back. Only when the smoke detector announced the arrival of the burnt toast did I come back to earth.   

It was a serious challenge to be able to communicate. It felt like torture to search for names and the words to express myself. I spoke very slowly and often lost my train of thought. And unless others spoke slowly I could not catch what they said. I could not retrieve numbers off the answering machine no matter how hard I tried. It was next to impossible to keep things straight in my normally sharp mind. It was a permanent state of being super stoned…. I was semi aware that this was going on but I did not really care… I lost my ability to feel much of anything.

It felt like a space adventure…..Beam my down, Scottie! I want to come back to earth! And this happened when I stopped taking all of the medication my doctors prescribed to me. This came about when I maxed out on the psychiatric drugs which were supposed to treat the depression caused by CNS Lupus. I was alone one night when suddenly I felt suicidal. It was a Friday night - my doctor was not on call and my husband was in Vegas. Per chance I decided to go on the internet to figure out what could be causing my newest symptom. What I learned changed my life!!! I found out that I was prescribed a higher dose of my newest and latest antidepressant drug than recommended. At the time, this was just one of the “so called” happy pills being pushed my way. And this was on piled high on top of all of the others drugs that were causing my brain to misfire. At this point I had taken over 13,000 pills in the previous four years.

Thankfully, I found the website www.drugs.com. That night I learned that 6 out of the 10 drugs I was swallowed every day interacted with each other. All of my CNS symptoms were side effects of many of these drugs. This site only described individual drug interactions. But how about the effects of taking numerous drugs which interacted with each other? Was the impact (6X2)+4? There is no way to determine the effect of multiple drug interactions. But I can tell you how it felt and what it did to my life!

You know I really think that it is a miracle that I am here to tell you my story.

I mentioned my experience to an American pharmacist who was a member of my tennis social group in Sun City Anthem (Henderson, NV). He had witnessed how stunned I was and he did not disagree that I was almost bad enough to be confined to a locked Alzheimer floor in a care facility.  He explained that in the United States I would be placed hospitalized, taken off all of the drugs and then maybe be reintroduced to one or two.

This was alarming because I was quite certain I would not be afforded that treatment in Canada. After all, not one of the scores of doctors or pharmacists had ever questioned whether one or more of those drugs they prescribed and dispensed could be the root of my problems. But I knew my friend was right so I decided to wean myself slowly off of all of the drugs. Even though I was on disability I was no longer going to be a prisoner of the medical system. I needed to let go of my fear that without these drugs I was going to die. But it was not too difficult to do that because death had been hanging over me for a long period of time. I had a lot of time to adjust to thought of dying after doctors on three separate occasions had told me that my end was near.

I am happy that I stuck to my recovery plan – it took more than a year. My last holdout was the clonazepam which numbed me to sleep at night. It was needed for the nights I remembered how my late sister, Laurie, was left to die alone in a care facility the year before. But even with this drug I could not erase the guilt of not being able to prevent her from dying of malnutrition and untreated infections. You see during my decade “lost in space” my sister was confined to a care facility with an untreated broken hip. She, too, lived in a drugged state at the mercy of doctors. Yet my most grievous memory of this whole decade was how Laurie was treated during her dying days. I witnessed her crying out in pain after nurses cut away at her bedsores (deep ulcers) without anything to blunt the pain.

    

But even this ultimate indignity is lessening. It helps me that a highly regarded coroner is investigating now and is going to make recommendations ….so hopefully this does not happen to other disabled people who are stuck in care facilities.

And I am finally realizing that I could not have done more to help her when I was in my own zombie state. But this does not mean that I will ever get over my regret of having unrelenting faith and trust in the Canadian medical system. I suppose that I am sharing my story so that you, too, can benefit from my experience.

Today I only take thyroid medication. I have no choice about this drug. It is needed to replace the hormone I lost 6 years ago when half of my thyroid gland had be removed due to a rare type of benign tumour.

I am now 60 years old and my career as a financial manager and a financial planner is long gone. But my life is not over and I intend to make up for lost time. I have been living the life of leisure for a long time but I don’t think I am cut out for it. Sure there are people who are envious of my opportunities to play and travel. But there is has to be more to life than playing tennis and stuffing my face on cruises. Don’t get me wrong - I love food and I am enjoying being able to focus and to react on the tennis court. The game is more enjoyable now I know who is serving and what the score is…. But I don’t think this is why I was put on this earth!!

 I  may never ever be completely normal again but I am moving in the right direction…. These days I am deliberating on how to write the next chapter of my life. Hopefully, I can move on soon because treading water (after what I have been through) is not a viable option.  Days are too long, and life is too short…..

ANTIDEPRESSANTS CAUSED MY ZOMBIE STATE

This blog explains why I had a serious reaction to taking antidepressants as described in my last blog, the Wakeup Call.

When I researched the internet and reviewed my cocktail of drugs, I realized that taking three drugs for depression at one time could cause serious problems.  I was taking Prozac and Trazodone at the same time. I was also taking clonazepam at bedtime for sleep. Although I did not realize it at the time this was the drug I needed to calm me from the side effects of the antidepressants.

The literature stated that there is a serious drug interaction between Trazodone and Prozac. http://www.drugs.com/drug-interactions/prozac-with-trazodone-1115-648-2228-0.html

The doctors and the pharmacists I have talked to seem to know this but they don’t really believe it. I have interviewed many pharmacists since I decided to gather information about antidepressants. Unfortunately, it seems rather common place to prescribe both of these drugs together.

There seems to be a lack of awareness of the effect of serotonin syndrome.  This condition occurs when there is too much of the neurotransmitter serotonin and in its most serious form it can lead to death. (Coincidentally, one of the treatments for this condition is taking a sedative like clonazepam so I guess it was lucky that I was taking this medication at the same time). Some of the symptoms of this syndrome which I have experienced include confusion, hypomania (slow thinking), tremor, muscle spasms, uncoordinated movement, high heart rate and high blood pressure.

As I have written in my previous blogs, I have almost stopped taking all antidepressants. Now I only take one quarter of the previous dose of trazodone and I plan to stop it completely soon.  With my oldest sister being critically ill, I have continued this drug as a crutch to deal with a high stress level and to help me sleep at night. I was originally prescribed this drug by the University of British Columbia Sleep Clinic to control periodic limb movement which affects my sleep at night.

In the last week, though I have been able to get back to playing tennis and I probably don’t need the drug to sleep at night.  I have also stopped taking the low dose of clonazepam which helped me to get to sleep quickly.

Getting off antidepressants after about 15 years has been a challenge! I have gone through withdrawal. I have felt moody, unwell, muscle pain, experienced panic reactions and had some trouble sleeping. I gradually stopped taking the medication over a few months. I had to set my own schedule because this is not something that any doctor was recommending.

Natural alternatives such as magnesium, and vitamin B6 are helping me to prevent depression. I am able to experience my emotions rather than just feeling numb. I have escaped the zombie state and I am thrilled!

THE WAKEUP CALL

As I said in my last blog, I was really close to being prescribed another drug for my worsening CNS symptoms. And then I had a serious reaction to wellbutrin. It was a wakeup call!

I doubt I would have stopped antidepressants and regained my mind if I had not gone through the experience of feeling suicidal. This feeling set off alarm bells in my head.  It happened on a weekend so I was left to my own devices. This is good because it is unlikely I would have got answers from my doctors or pharmacists.

 I got on the internet and found out that the drug could be causing the symptoms – suicidal thoughts, confusion, short term memory problems, and the lack of coordination. I also learned that someone with a family history of bipolar should not have been prescribed the drug.

This shocked me to the core! I then realized that I had to verify everything to do with my healthcare. I started to look at all of the prescriptions I was taking.  It was easy to find relevant prescription drug information on the internet and I would highly recommen

d visiting www.drugs.com and the US government website www.fda.gov/drugs.  I could not believe that the doctors and pharmacists did not know this information. The individual drug interactions are known. Out of 8 drugs, I had 5 serious drug interactions going on. But this is a whole other story for another blog.

It was my review of all of the drug interactions that altered my medication plan. One of my biggest risks of having CNS lupus (inflammation of the blood vessels in my brain) is having a stroke. One of the drugs I am taking is plavix which makes my blood less sticky and less likely to cause a blood clot.  Can you imagine my dismay when I found out that this drug has been rendered useless because I was also taking Prozac, an anti-depressant? Thousands of dollars down the drain over 8 years, unmitigated risk and not one professional pointed this out.

After bringing this to the attention of my doctors, they suggested that there was another antidepressant that I could take that would not interfere with the plavix. When I went to pick up the prescription from the pharmacist, he cautioned me to stop the Prozac for a period of 6 weeks before starting another antidepressant. I heeded his advice since I was not eager to repeat the suicidal idealization experience -besides this was going to be the third differenct antidepressant taken in just over 3 months.

About the same time, I spoke to a tennis friend who is a pharmacist. He said that I needed to stop taking most of the drugs in order to get over all of the drug interactions.  He said that normally someone is hospitalized and taken off all of the drugs. Then they are reintroduced say 2 rather than 8 medications.

Hospitalization was not an option. I knew I had to wean myself off of the antidepressants. It would have been best if I had received advice from a psychiatrist but I was several months away from being able to see one. I planned and executed my own withdrawal scheme. My experience of withdrawal is described in my next blog - Antidepressants Caused my Zombie State.