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…..

Neurontin for Everything – is it worth your life?

 

 

 Check out the class action suits!

Have you taken Neurontin (or gabapentin), too? I, like many other people with fibromyalgia and lupus, was prescribed this drug for pain. Luckily, it did not cause me to be suicidal. How about you? If you contemplated suicide while taking this drug, then listen up! There is a Canadian class action suit which may partially compensate for your pain but you just have until Dec 16^th to file your claim.[1] There are many other serious side effects of this drug but this is the only one which has deemed to be compensable in this court action.  However, there are other class action suits going on in the US which may assist US residents.[2]

I just learned about this situation when I was reading an article about the billions of dollars in fines paid by Big Pharma for their fraudulent marketing of dangerous drugs.[3] I immediately sat up and paid attention because I was first prescribed Neurontin about a decade ago.  I was so over drugged during this period I can’t say exactly how long I took it.  I know I felt like I was drunk a lot of the time and eventually I only took it at night. I did experience known side effects like confusion, excessive sleepiness, abnormal eye movements, balance and coordination problems, depression, and anxiety [4] . But back then, my doctors thought these symptoms were all caused by a mystery disease like lupus!

The pharmaceutical manufacturer, Pfizer, never proved that this drug worked on pain caused by fibromyalgia or lupus. But this did not stop the company from promoting it for pain and almost a dozen conditions including ADHD, bipolar, restless leg syndrome, alcohol withdrawal....[5] Pfizer was so intent on making it a big seller that one of the sales managers told the pharmaceutical reps:

”we can’t wait for [physicians] to ask, we need [to] get out there and tell them up front. Dinner programs, CME programs and consultantships work great but don’t forget the one- on- one. That is where we need to be, holding their hand, whispering in their ears “ Neurontin for pain, Neurotin for monotherapy, Neurontin for bipolar and Neurontin for everything” [6]

Pfizer paid one doctor $308,000 to flog it at conferences; other doctors were paid to hear the spiel and some doctors were rewarded with trips to Florida and the Salt Lake Olympics.[7]

 

By 2004, the Department of Justice prosecuted Pfizer and they plead guilty to two counts of fraudently promoting Neurontin.[8] They paid $430,000,000 to reimburse federal and state government for the drug costs paid by them.[9] This was a small price to get this drug established. When the marketing strategy commenced in 1998 sales in the US were $98 M but by 2003 sales increased to $2.3 B in the United States.[10]

Their strategy continues to pay dividends. The FDA has only approved Neurontin for use in epilepsy and pain  from shingles (postherpetic neuralgia).[11] But this does not stop doctors from prescribing gabapentin (the generic name for Neurontin) for other conditions and the promotional material is still out there on the internet.

A search of WebMD brings up all kinds of off label uses for Neurontin like hot flashes, panic disorder, pain disorder, restless leg syndrome, migraines, MS etc.[12] Keep in mind, Neurontin is a drug that has killed people and has a black box danger warning from the FDA. Drugs.com indicates “it may also be used for other purposes not set out in this medication guide”. [13] Does that remind you of the Pfizer’s sale manager’s sales pitch - Neurontin for everything? If the pharmaceutical companies have proof this drug works for all of these other conditions, why have they never sought approval from the FDA? Did they have the evidence needed to get approval? Maybe they thought why bother when doctors have bought into the benefits of Neurontin for so many other purposes!

When a drug company hides the negative test results, doctors can not evaluate the merits of the medications. It took a court case in 2010 before Pfizer released all of their research trials. [14] Only then was an independent review of the studies done. Medical researchers at Therapeutics Initiative, working at the University of British Columbia, concluded that Neurontin reduced neuropathic pain by less than 1 on a scale of 1 to 10 in just 15% of the patients while 15% of the patients were harmed by the medication. [15]

 This type of review can’t be good for the pharmaceutical industry. Big Pharma is not accustom to an independent group scrutinizing their research and drugs. Thus it is not surprising to learn that the plug was pulled on this group earlier this year - especially since the pharmaceutical companies and pharmacies donated $600,000 to the BC Liberal Party over the last eight years. [17] That too (like the money spent on kickbacks to doctors) seemed like money well- spent by Big Pharma. However, an international lobby [18]embarrassed the government into reinstating the funding to this group a few weeks ago. [19]I’d call this one a minor victory for us little guys who swallow most drugs pushed our way!

In conclusion, if you have been harmed by this drug, look closely at the class action suits. And if you still take this drug and wonder why you feel the way you do, go to www.drugs.com [20]to see if you are experiencing side effects of Neurontin/gabapentin. Think long and hard before risking dementia or death, particularly, if your problem is hot flashes…. because it is your life!

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[1] http://www.classaction.ca/neurontin

[2] http://neurontin.whocanisue.com/

[3] http://www.forbes.com/sites/johnosborn/2013/11/07/ho-hum-another-multi-billion-dollar-drug-company-fraud-settlement/

[4] http://www.drugs.com/neurontin.html

 

[5] http://neurontin.whocanisue.com/

 [6] http://www.forbes.com/sites/johnosborn/2013/11/07/ho-hum-another-multi-billion-dollar-drug-company-fraud-settlement/

[7]  http://www.sfgate.com/business/article/Huge-penalty-in-drug-fraud-Pfizer-settles-2759293.php

[8] ibid

[9] ibid

[10] ibid

[11]http://www.accessdata.fda.gov/drugsatfda_docs/label/2011/020235s050,020882s035,021129s033lbl.pdf

[12]http://www.webmd.com/search/search_results/default.aspx?sourceType=all&query=gabapentin+uses&navState=38

[13] http://www.drugs.com/neurontin.html

[14] http://www.ti.ubc.ca/letter75

[15] ibid

[16]  ibid

[17] http://www.vancouversun.com/health/Liberals+favourite+pharma/8363549/story.html

 

[18] http://www.canadiandoctorsformedicare.ca/In-The-News/open-letter-to-save-the-therapeutics-initiative.html

 

[19] http://www.straight.com/news/514316/therapeutics-initiative-funding-reinstated-bc-government Oct 22/2013

 

[20] http://www.drugs.com/neurontin.html

 

 

MAKING THE MOST OF IT

I am still grieving the loss of my sister. It is all too fresh in my mind. After all, it is less than a week ago we interned her ashes beside my mother/father/brothers’ graves in the Qu’Appelle Valley on the prairies.

My kind neighbor came over to talk to me yesterday. She knows how angry I still am at how my sister was left to suffer needlessly and die after the care facility where she lived ignored her basic health needs. It goes without saying that the anguish I feel is causing my considerable stress and is putting my fragile health at risk.

Marg came to help me get past this. She listened to what I was doing to cope with my feelings. She shared some of her life experiences and in doing this she cautioned me to not getting into a negative trap which makes me constantly relive my pain. Marg explained that she believes in my capacity to be positive and to excel to beat life’s challenges. This wonderful lady is a great mentor because she has had similar health challenges and she has turned things around to help so many other people.

Anyway, I am lucky to have this caring friend who freely shares her love and wisdom. Yesterday she gave me something to think about and some encouragement about how to turn “lemons into lemonade”. Wise words from a wise woman! Probably I would get to this at some stage, but when you have lupus you have to try to get out of the negative as soon as possible.

She invited me to find my spark so I can leave my mark in this world. She encouraged me to think about what is important to me. Knowing what space I am in, she brought up the point about thinking how I would want to be remembered when I leave this world.

A little later, Marg came back with a book she had just finished reading. She brought “The Spark – a mother’s story of Nurturing Genius” written by Kristine Barnett for me to read. It was so enjoyable I devoured it in hours. This story is truly remarkable and totally inspirational. It is about how she found the spark in her autistic son who “the experts” said would never be able to even tie his shoes. This devoted mother (with lupus may I add) relied on her own intuition and found the way to unlock her son’s brilliant mind. Her son, Jacob, has a higher IQ than Albert Einstein and he has learned to relate to people and use his great gift to make advances in the fields of science and mathematics even though he is still a child. This mother not only touched her son but she reached out to the whole community of families dealing with autism in Indiana.

So exactly how did this amazing woman help her son live well with autism? You really need to read the book to find that out. One clue though is she focused on the positives and worked with what interested him. She encouraged him to play and experience nature. And she never gave up on him and believed the low expectations the “experts” had of him.

I found some of the passages of her book particularly illuminating for me. She believes that we need to experience life through our senses. She talked about how she coached a stressed- out parent to heal his spirit by following her recipe to calm his nerves one night, He was to fill his house with the aroma of rosemary and sage roasting in a chicken, wrap himself with a soft, warm blanket (heated in the dryer), listen to music he loved and sit for an hour quietly looking at a family photo album.

She writes:

“indulging the senses isn’t a luxury, but a necessity. We have to walk barefoot in the grass. We have to eat clean snow. We have to let warm sand run though our fingers. We have to lie on our backs and feel the sun on our faces.”

On a personal level, what does this book say to me? Well, it opens me up to the idea that exploring my senses will make my life more fulfilling and less stressful. It makes me think I can emulate her and not let anything (including lupus) hold me back. I, too, can identify my “spark” and ignite it. And I can strive to let my light shine by working with what I have and building on it. Yes, my life matters!

SKIN CANCER AND LUPUS

LUPUS AND SKIN CANCER

What does skin cancer have to do with lupus? Well, people with lupus are more prone to skin cancer or at least those ones who take immunosuppressant drugs. It is a fact that cyclophosphamide (Cytoxan) and azathioprine (Imuran) cause skin cancer. I have accepted this as the price of doing business (ie treating my organ threatening lupus). I have taken these chemo therapy drugs for the last 9 years and I have just had my sixth basal skin cancer lesion removed from my skin. Maybe my light skin and hazel green eyes make me more susceptible to this affliction but then my childhood days at the beach in sunny Saskatchewan probably have also played a part.

And my family history could have some bearing on it. Three out of seven immediate family members have also had skin cancer. It is worth noting that when one member of a family gets skin cancer, the other members of the immediate family are advised to also get checked out.

I consider myself lucky that I have only got basal cell skin cancer. It is the relatively benign kind of skin cancer which is usually confined to the outer layers of the skin if caught early. It is not as serious as squamous skin cancer which can spread if it is not caught in time. However, I had a friend who was not treated in a timely manner and he died from it squamous skin cancer last fall.

And then there is the most serious kind of skin cancer, that is, melanoma, which definitely needs to be removed early because it goes spread internally and does kill people. I know four people who have had that type of skin cancer and because it was caught early they are still alive and well. However, melanoma skin cancer kills one person every minute in the US and the incidence of it is increasing.

Any kind of skin cancer can be disfiguring. Again I am lucky in this regard because the two instances of skin cancer on my face have been handled by a plastic surgeon that specializes in the Mohs method. There are not that many doctors who specialize in this kind of surgery and I was fortunate to be referred to the Skin Care Clinic at the Vancouver General Hospital where some of the pioneers in the field work. Thus I have escaped, so far, relatively unscathed.

Here is a picture of the  wound on my shin. It is quite the gash! The size of this cut surprised me but I have been assured that was what was needed to:

 a) remove the tumor and the adjacent area around it

 and b) leave me with the least obvious scar.

As the plastic surgeon explained, the incision needs to be 3 times as long as the widest section of the tissue removed. He is taking the tumor plus healthy looking tissue bordering it. Thus the spot that I had removed from my shin that looked like the size of a pencil eraser, has left me with a 5 stitches and a scar 2.3 inches long.

Now if I earned my livelihood from modeling pantyhose I am sure they would have elected to do the Mohs method to remove the cancer. In this case, I would have had a lot more invisible stitches and probably a less visible scar. But there are no guarantees with scars, because everyone heals differently. The conventional wisdom is that people with lupus heal more slowly or at least for incisions above the waist (according to my last plastic surgeon).

 This is really no big deal at my age. I wear my scars as a warning to others to take care of their skin. And every time I see my young nephew, the one who balks at wearing sun screen, I trot out my portfolio of scars to serve as a reminder to not follow in my footsteps.

So how has this changed my behavior? Well, I cover up with a long sleeve shirt, a floppy hat, and wear 100% Neutrogena sunscreen on my face and a lower number on other exposed skin. I have to say that in the summer I like to wear tennis skirts when I play tennis but I guess that is going to have to change too. There is nothing like a new scar to hide, in order to make me cover up.

And I have recently read that certain foods including coffee, fish, beans, carrots, Vitamin C and beta carotene may protect people from getting skin cancer. Now I am going to make a point of eating more of these foods. Unfortunately though, I damaged my skin a long time ago. Thus even these protective measures do not guarantee that I will not get more skin cancer. For this reason, I need to see my dermatologist once a year for skin cancer checks. And if I recognize any more lesions between checkups then I will be in to see him as soon as possible.

The people with lupus in the crowd are probably questioning my sanity in going out in the sun at all these days. Even those lupus sufferers, who are not photosensitive, are not supposed to be hanging out in the sun. The doctors will tell you any exposure to sun light affects the immune system and increases the risk of a lupus flare. So I am more cautious and don’t suntan or stay out in the midday sunshine. But feeling the warmth of the sun and being in bright light makes my life worth living so I am not going to live in a cave for the rest of my life.

 http://www.webmd.com/melanoma-skin-cancer/features/12-ways-protect-skin-cancer

http://umm.edu/health/medical/altmed/condition/skin-cancer

 

 

Magnesium glycinate cures depression

My short term memory problems, difficulties concentrating, slowed thinking, confusion, mental fatigue and trouble speaking have almost completely  disappeared since I went off of antidepressants and starting taking magnesium bis-glycinate 200 supplements.

As I said in my last blog, weaning off of prescription drugs was a slow process and it was an adjustment. However, my salvation during this whole process has been taking magnesium supplements. I have taken 200 mgs of magnesium once or twice a day for the last 3 months. I was able to purchase this CanPrev products from Nutraways on Lonsdale Avenue in North Vancouver and found this type of magnesium at Choices Market. Note the type of magnesium is critical to absorption.

As promised, I plan to write further blogs to provide you with the literature about antidepressants and natural alternatives. These blogs will come in time. In the meantime, be sure to read this short abstract published by the U.S. National Institute of Health. It will alert you to the reason depression is so widespread in North America. And you will learn that I am not alone in receiving substantial benefit from magnesium. http://www.ncbi.nlm.nih.gov/pubmed/16542786

DRUGS CAN CAUSE CNS LUPUS-LIKE SYMPTOMS

WAS THIS AN UNIQUE STORY?

Not at all!

While I think my experience has been unusual, I know that it is not unique.

My recent google search for CNS lupus symptoms brought me to the Lupus Foundation of America website. The headline read “drugs used to treat lupus can cause side effects that are similar to the symptoms of CNS lupus.” It encourages people to consult with a neurologist who can determine if the drugs rather than lupus could be the cause of the problems.

 DRUGS THAT CAN CAUSE CNS LUPUS-LIKE SYMPTOMS

NSAIDS (non- steroidal anti-inflammatory drugs)	Celebrex, ibuprofen, and naproxen
Antimalarial drugs	plaquenil and hydroxycholoroquine
Corticosteroids	Prednisone
Hypertensive drugs	blood pressure medications like beta blockers

http://www.lupus.org/webmodules/webarticlesnet/templates/new_donatenow.aspx?articleid=2323&zoneid=43

Most surprising is that antidepressant drugs are not included in their list. I think this is an oversight.

But I am not naïve. I have to say that I have excellent doctors - they are world renowned doctors at the top of their fields.  My neurologist is a graduate of the Harvard University. And if he missed this, then most other doctors are also probably not aware of the side effects of antidepressants.

Perhaps doctors are in the dark because pharmaceutical companies do not publicize the problems with their cash cows?

I have done a lot of reading about antidepressants recently. There is considerable evidence about how ineffective these drugs are and just how harmful they can be. Certainly, my story demonstrates this.

My upcoming blogs are going to focus on the research which calls into question the effectiveness of antidepressants. I know you will be shocked to learn that antidepressants actually increase the risk of suicide. 

After that, I am going to share information about better, more natural ways that have helped me deal with symptoms of depression. 

 

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!