21 December 07 - 00:36
Cataplexy helped by Cannabis-testimony
From the age of 3, after a fall followed by a 20 minutes seizure, I have had some form of neurological problem. I was diagnosed with maladies such as epilepsy (petit mal and grand mal), body migraines and anxiety attacks until 20 years old when I was diagnosed with full blown cataplexy.
I would like to start my statement with what Cataplexy is and how it affects my life.
A very basic description of Cataplexy is: ‘A neurological disorder that involves sudden, temporary loss of muscle tone but not loss of consciousness‘. It is a part of Narcolepsy, but I do not have the sudden dropping to sleep part, instead my body goes into partial or full paralysis and I drop to the floor, conscious but unable to communicate. During a full Cataplectic seizure….. to another person it looks as though I am either in a coma or dead. This can last anywhere from a few minutes to 25 minutes with me.
Daily I get episodes of - muscular weakness depending on the severity of the attack, ie. slackening of the facial muscles, dropping of the jaw or head, weakness at the knees, or total collapse on the floor. My speech is slurred, eyesight impaired, but hearing and awareness remain mostly undisturbed although like ‘in a dream‘.
It is a very frightening disorder for not only myself, but my mother and anyone else who is with me at the time.
Leading to the paralysis I get ……Feelings of Nausea, Numbing, tingling, hot and cold flashes, all going in waves through my body, followed by profuse sweating, dizziness, confusion, extreme weakness and nerve pain, until the partial or full paralysis/seizure takes hold. I also experience a cold, sweet sickening taste in my mouth and a smell of chlorine.
You may have heard stories of people who have woken up in operations and been unable to move, blink, and speak. As a result they have been unable to tell anyone, and they have subsequently felt every surgical procedure as if they were awake. This is how cataplexy works also, unable to let anyone know how you feel and the pain, trauma, fear you are going through. There are even stories of people waking up in morgues because they were pronounced dead.
Part of the Cataplexy symptoms also show themselves in what I term ‘shock seizures’. Often, just hitting my wrist, ankle, knee, head etc. a shock goes through my body and the next thing I know I am on the ground in a partial paralysis causing me to lose my breath and my heart to double in rate.
Cataplexy is linked to Rapid Eye Movement (REM) in sleep which makes it a sleep disorder even though I, personally, do not have the sudden falling to sleep of ‘regular‘ narcolepsy. Most people go into REM sleep about 1 hour after they have fallen asleep and during that time the brain is telling the body to shut down, but thankfully the brain itself does not shut down otherwise a person would go into a coma. Also, the heart, lungs, kidneys, liver do not shut down, but the bladder and colon can activate and control is lost, resulting in embarrassment for the Cataplexy sufferer when he/she comes back to normal.
The reason the body shuts down is to stop people acting out their dreams, (which start in REM sleep) Unfortunately, a Cataplexy sufferer also has what is known as hypnagogic and hypnopompic hallucinations (vivid dreams during the going to sleep phase and waking phase)
People afflicted with Cataplexy live in a world where just for a few minutes, waking and dreaming are not always separated,
Partial sleep paralysis has found me paralysed on the floor, having fallen out of bed after a nightmare, or I have woken up during the night or first thing in the morning and been unable to move. Other times, I have had the nightmares/night terrors due to the hypnopompic and hypnogogic hallucinations and have got out of bed and run through the house in terror fully believing that what was happening in my dream was happening in reality.Cataplexy is said to be triggered by Emotions, either negative or positive. Some people have an attack only on rare occasions, but I have some form of Cataplectic attack every single day.
These attacks are triggered by strong emotions such as exhilaration and laughter, anger and surprise, fear and dread and even extreme heat and extreme cold.
This is an insidious disorder and no-one could understand unless they have been the person going through it or, in my case also my mother. It is something she has had to suffer with right along with me for 24 years of seizures and 13 years of Cataplectic symptoms. Not only has my life been severely disrupted but my mother‘s has too. Because of Cataplexy, neither of us has the quality of life and life‘s experiences that we should both be enjoying.
As you can imagine, Cataplexy is a very dangerous disorder to have which is why (due to various accidents growing up) I have chosen not to even ride a push bike (I had a few occasions where I blanked out and rode into stationary cars and one car that was moving), I have chosen not to drive a motor vehicle or motor bike, not to swim anymore (I nearly drowned on a few occasions), not to climb and so on and so forth. I have even had accidents in the shower, nearly drowned in the bath (I do not take a bath unless my mother is in the house) and have had a paralysing Cataplectic attack when cooking.
A recent study on seizure disorders stated that ‘Cataplexy, all round, is a lot more dangerous than epilepsy”.
The causes of Cataplexy are not fully understood yet, and there is no cure. It could incorporate a brain injury, auto immune problems, environment and genetic. As well as Cataplexy , I also suffer from chronic arthritis and food and chemical sensitivities which are both genetic and environmental. It is possible that there is a link between all three of my major health problems because of this.
Another side effect of Cataplexy that has been a bane of my life has been ‘hunger suppression’ in the form of my body not registering that it is hungry and needs sustenance. I could go all day and even into the next without feeling hungry and not eating, if it wasn’t for my mother reminding me to eat. The only time it registers with me is when I start to feel really nauseas in the stomach.
All this is leading to the next part of how and why I choose to use the herbal plant Cannabis for my personal medication. I will try and keep it brief.
1) The Cannabis Plant has been documented as a medicine for the past 5,000 years in many different cultures and countries by well respected and trustworthy sources right up until 2007. Cannabis, as a medicine, was removed in the 1950’s from the Australian Pharmacopaea as more and more synthetic and extract medications came on the scene. Research has shown that Cannabis has been used for a myriad of various ailments. The list is huge.
2) Cannabis is a non-toxic plant that has an LD50 of 1:40,000. It has never been documented as having primarily causing the death of anyone. It is a drug of low physical dependence, withdrawals are light and the dopamine level raiser is less than for alcohol or any Pharmaceutical drug.
In a way I am dependant on Cannabis but only because I know 110% that it is my life saver. Dependence for good, is not the same as having an addictive personality of abuse.
3) It stimulates the appetite which is essential for the Cataplexy problem of hunger suppression.
I was stick thin at one time, bordering on anorexic. Now I eat healthy, nutritious food and have put on weight.
4) The Health Dept and others say that ‘No medicine has ever been smoked’ (which is one of the reasons given against medical cannabis), but Cannabis does not have to be smoked to get all the benefits. Smoking anything is not good and if one reads up on the symptoms of Carbon Monoxide poisoning, one would see that the side effects mentioned as coming from the use of Cannabis, are in fact a side effect from the delivery system of smoke. Cannabis can be eaten, vapourised, drunk as a tea or sprinkled on food, all acceptable ways of taking medication. Personally, I choose to drink mine as a tea and 1 cup of tea usually suffices me for 24 hours at a time (2 a day if the symptoms are exceptionally strong). As you can see, your Honour, I am not an abuser and therefore I do not Mis-Use my medicine of choice.
5) The subject of Medical Cannabis has been laid on the Parliamentary table many times over the years, but has always been withdrawn. There are, however, people in Parliament, Doctors, Professors, Scientists, Judges, Lawyers, and many more including, of course, Medical Cannabis users, trying to get their voice heard and listened to and acted upon. We, personally, have been writing for 4 years on behalf of Medical Cannabis users to be able to choose to use Cannabis as their preferred choice of Medicine.
It is to be remembered that Medical Cannabis users are already ill, sick and even dying. They would not put something else in their body that they thought would make them worse, which is why most medical cannabis users choose not to use the Pharmaceutical drugs with the LD50 ratio of 1:15 to 1:100 when they would much prefer to have Cannabis with the LD50 ratio of 1:40,000.
People can overdose to death, or at the very least suffer horrible side effects on Prescription drugs whereas they will not with Medical Cannabis. It is the preferred medicine of an estimated 20 million people around the world. It is not just young people who are interested in it. We took part in Disability Week and Drug Action Week this year, and we were amazed at how many people asked about Cannabis as a Medicine who were over 50 years of age. One 75 year old man we spoke to said he already uses it to stop the tremors of his Parkinson’s disease and it works for him.
Cannabis works as a medicine for me and stops my Cataplexy, and my arthritis in its tracks, gives me an appetite and used as an ointment has been known to heal my rashes and other allergic reactions
(it’s anti-inflammatory and anti-fungal), and helps with my IBS symptoms. Anything that can do that, and so quickly, is deserving of the name Medicine. Hippocrates, the Father of Medicine, said, “Let food be your medicine and let medicine be your food. Cannabis is first and foremost a vegetable and a herb and secondly a medicine, so it has a double effect. Hippocrates also stated, ‘First do no harm” and I and millions of medical cannabis users have had no harm come to them from using the Cannabis plant for their medicine, but have had much, much benefit.In “Science Service” 1999 it states “Clinical and anecdotal evidence also points to the effectiveness of Cannabis as a therapeutic agent in the treatment of a variety of spastic conditions, such as Multiple Sclerosis, Paraplegia, Epilepsy, and Quadriplegia. Animal studies and carefully controlled human studies support cannabis’ ability to suppress convulsions”.
From the House of Lords, Great Britain. Mar. 14th 2001 “We consider it undesirable to prosecute genuine therapeutic users of cannabis who possess or grow cannabis for their own use. This unsatisfactory situation underlines the need to legalise cannabis preparations for therapeutic use”.
Supreme Court of Canada in its Judgements stated, "In a free and democratic society, the individual must be left room for personal autonomy to live his or her own life and to make decisions that are of fundamental personal importance."
The decision to choose to use Cannabis or to choose to use pharmaceutical drugs should be my decision based on my beliefs and experiences which is why I have spent the last 4 years writing on the subject. My health is of fundamental personal importance to me and my family. I am not going to do something to myself that will bring harm to me, which is why I have to have the utmost faith in my medication of choice, just as other people have to have faith in their particular medication of choice.
David, Australia
No comments
No trackbacks:
