Narcolepsy is curable?

I only recently discovered the research suggesting that narcolepsy is an autoimmune disorder caused by a viral infection which kills orexins in the brain. It is exciting stuff because it is the first time I have heard that narcolepsy might be curable. This is not just a theory either. Many narcoleptics have already had remission of their symptoms. How did they do that? It seems there are two main ways, although there may be more.

The first is by following a gluten free diet. Narcoleptics have some genetic similarity with Celiac people. I don't know much about Celiac disorder, but there are many narcoleptics on various forums claiming that by going gluten free they greatly reduced the incidence of sleep attacks and cataplexy. Some even claim they went away entirely. It appears that gluten is very toxic for narcoleptics and it is my understanding that it triggers certain antibodies to kill orexin cells.

The second way is by killing the virus which caused the antibodies to turn on the orexin cells in the first place. It seems that the virus has similarities with herpes virus, and can be killed by the same medication commonly used to treat herpes. Well that is what Heidi claims to have done herself using Valtrex. It is only available by prescription, but there are many sites on the internet offering what they call generic valtrex, which is the same recipe, just made by other companies. It also costs much less. I am thinking of buying some to try it out, but would rather find out more first. Unfortunately there isn't much more info available at the moment.

Another interesting study found complete remission of symptoms in narcoleptics when they were treated with immunoglobulin. This approach also sees narcolepsy as an autoimmune disorder.

http://news.smh.com.au/breaking-news-world/researchers-say-narcolepsy-trigger-found-20100218-oe8j.html

So it looks like there could be some cures for narcolepsy, although I wouldn't get my hopes up that any pharmaceutical company will come up with such a cure. Funding for medical research is often done by huge corporations who want to make money out of the drugs developed or discovered. A one off treatment wouldn't be worth investing in. Better to come up with a long term treatment which a person has to take for the rest of his/her life. Thank god Heidi is making her research available and accessible to the public. I should add that I would love it if I am wrong, but I doubt it.

An Indian and a Chinese treament for narcolepsy.

This morning I remembered an Indian syrup which was recommended to me one time by a guru in Varanasi I was visiting in 2000. He told me to try using a popular Indian syrup called shankpushpi. It is often used by students in India to help them concentrate and calm the nerves. You can buy it from the shelf in any decent pharmacy in India. In the west it is called colvolvulus avensis, otherwise known as bindweed, a noxious weed found on farms around the world. If you google those terms you can find various studies done using bindweed to treat cancer and other things.

I found that it worked quite well at the time and I think would be an acceptable addition to my otherwise pharmaceutical free approach to narcolepsy. 
I would like to get my hands on the Indian product if I could, and if not, find a herbalist who can make me up something using bindweed. We'll see how that goes.

The link between treatments for narcolepsy and medicines which calm the nerves and help focus is an interesting one. The obvious western version would be the way amphetamines and Ritalin are used to help ADD people concentrate and calm down. At the same time it works as a stimulant for narcoleptics. Shankpushpi seems to be similar.

In addition to this I remember one time I visited a Chinese doctor. I explained to him the symptoms of narcolepsy and he did the usual examination. Part of his diagnosis was that my shen was too active. Shen means spirit, and I well understood his meaning, never having had a moment of complete unconsiousness for the last twenty or so years. He included in his list of herbs ingredients to "calm the shen." Talking to a friend of mine who studies Chinese medicine, these are usually heavy ingredients such as seashells. He gave me my prescription, scrawled in Chinese characters on a little pad and directed me to the herb dispensary. As is normal in such places this consisted of a whole wall of small drawers, each one containing a different herb. As I watched, the doctor's assistant carefully measured and shovelled the different herbs in the prescription onto large white pieces of paper which were then folded up into individual parcels. Each parcel needed to be boiled in a pot for about an hour, the left over liquid being the medicine. It smelled and tasted like shit, but that is the way it should be according to Chinese medicine.

I went through a while of taking this herbal concoction and noticed a big change in the way I felt. It felt like finally I could feel calm. I never realised how nervy I was until this time. Chinese medicine is expensive and at that time I had little money, so couldn't continue the treatment.

There seems to be a commonality to these two treatments, both working as a nerve tonic of sorts, as well as being a stimulant. Interesting.

My first awareness of OBE's

I was first introduced to the idea of out-of-body-experiences by my father, who happened to own two of the classic books written on the subject. One of these was called 'Journeys Out of the Body,' by Robert Monroe. It was a fascinating book which outlined Monroe's many experiences where he found himself floating outside his body. He could induce such experiences at will, and even performed such feats under laboratory conditions. I was about twelve or thirteen at the time, and devoured this book with a passion. I remember practising some of the methods he teaches in the book, with mixed results. As a narcoleptic, there was always something interesting that happened during that liminal stage between waking and sleeping. It didn't usually follow the pattern outlined in this book.

In the book Monroe talked about a device he had designed where a slightly different tone was played into either ear, through headphones. When he listened to such tones while lying down, he found himself being spontaneously projected out of his body. When the mechanism of this was looked at more closely, it was discovered that that such sounds synchronised both hemispheres of the brain, and from this state initiating an OBE was easy. He went on to develop this discovery into a complete system of training using a combination of binaural sound and guided practices to teach people how to do OBE's. He founded the Monroe Institute for this purpose. My dad and I were interested in this stuff, so we purchased Monroe's 'Gateway Program,' and some of his 'Human Plus' tapes. I never had the discipline to get into the gateway program very far as there were many tapes to listen to. I do remember using the 'Human Plus' tapes to good effect, however.

These tapes combined the binaural sound effect with a kind of hypnotic autosuggestion which was programmed into the subconscious while you listened to a kind of white noise. You could buy all kinds of different functionalities which gave you control over all kinds of areas of your life. The one that worked for me was one which enabled me to control blood flow to my brain. After listening to this tape a few times all I had to do was breath deeply, repeat the programmed autocue, which were the words "plus,flow,better" and breath out. When I actually remembered to do this as I was having a sleep attack, it often worked quite well, somehow offsetting the zombie effect. I was about twelve or thirteen at this time and I never really made it a real part of my life however. It was just an interesting effect.

Anyway, Monroe went on to write a few more books, all classics on the subject of OBE's and my dad and I purchased and enjoyed them. The other book which my dad happened to own is called "The Projection of the Astral Body", by Carrington and Muldoon. Carrington was another character who found that he could quite easily and often spontaneously find himself floating outside of his body.  He found it fascinating and began to experiment with and investigate the mechanisms involved. I remember reading his descriptions of what he calls the silver cord (the non-physical cord he saw linking his astral body to his physical) and the strange intelligence behind what he called the 'cord activity range'. The plates used to illustrate this are still etched in my memory. Many books have been written on the subject of OBE's since those days, but at the time there wasn't much out there. 

I guess the reason why I am writing about this topic is because it is actually one many narcoleptics are naturally familiar with. The experience of looking at the physical body lying on the bed and the associated sleep paralysis is such a common one reported by narcoleptics, yet so far I have never seen anyone posting or writing online about the obvious connection between this and the subject of OBE's. I know that for me, exposed to such a subject at a young age, it lessened the fear associated with such experiences, and I began to investigate them for myself. What so many narcoleptics experience as something fearful, sleep paralysis, is actually something many 'normal' people try hard to induce, in order to initiate an OBE. For example, Monroe's methods first require you to learn how to enter what he calls the "mind awake, body asleep" state, a kind of voluntary sleep paralysis. After you can enter this state at will, then you can try various methods to get out of the body. I remember Monroe's 'rollout' method, where one simply rolled over in the astral body like a log in the water, finding oneself outside the physical.

Given the natural ability of narcoleptics to maintain awareness during the hypnagogic state and into sleep paralysis, it is my opinion that they have an ability for OBE's which should be valued for what it is, a gift. Of course it is a gift most narcoleptics would rather do without, but in my opinion it is more healthy to look at it positively, than negatively. After that can be done, a whole new world opens up and things get interesting.

Visiting an Aboriginal Healer

There were two people staying in the ashram in India at that time who happened to work on an Aboriginal settlement in central Australia as teachers. They had a photo of someone they suspected might be a kadaitcha man. the word 'kadaitcha' is something often fearful to Aboriginal people. They are viewed with awe and respect and are considered to be powerful healers, sorcerers and, if they so want to, killers. Aboriginal society traditionally blamed a lot of deaths as due to a spell or something similar from such a person, with the resulting retribution often following. Consequently, most such men keep  a low profile, never advertising what they are. People may suspect someone of being one, but never know for sure.

So these two people had a photo of someone living on their settlement they thought might be such a person. We took the photo to the guru, who said that that was the person I should see. These teachers communicated with this man, and he asked to see a photo of me before he agreed to see me. A photo was sent and in time he agreed to see me.

After a few months back in Australia it was time from my parents and I to head out to visit this healer. There was a lot of rain that year across central Australia, which was very unusual. Instead of the barren red sand of the desert, the land was green, grasses and bush flowers carpeting the ground from horizon to horizon.

To get permission to enter some Aboriginal settlements is not an easy thing. many of them do not allow just anyone from the public to visit. Permission from the elders of the community is necessary. Fortunately the healer I was going to see, called Treacle, was one such elder. After a few days driving, we finally drove along the heavily currugated dirt road and into the settlement.

It was not exactly what I had expected. There was no ordered housing system of any sort. The aborigines lived in what seemed to be ramshakle huts and shelters made of a flotsam and jetsam of branches, plastic tarpauling, tin sheet metal and steel poles. They seemed to like it that way. There were western style buildings such as the onsite supermarket, meeting hall and school and also some western style units, which the teachers and any visitors could stay in. 

My parents and I moved into one of these units. We were there for two weeks and had planned to meet up with Treacle as soon as possible to begin the healing. In hindsight it is amusing how presumptuous we were. It is important to note that many Aboriginal people do not share the same anal clock driven sense of time as we do. Our western obsession with speed, appointments, being on time etc. doesn't fit with the worldview of many indigenous Australians. Of course not all, but some don't care about thinking of the world like that. The reason I say this is because it was only toward the middle of the second week that Treacle came to visit us in our unit.

He was a nice, quiet natured softly spoken man. Like many Aborigines (so I was told), he didn't engage in direct eye contact much. I was told that they consider this to be ill mannered. He had a very strong accent, which made it difficult to understand what he was saying. We exchanged light hearted chit-chat for a few minutes and then he left. he came to visit us a few times in the next few days, bringing some other 'kadaitcha' men with him on his last visit. They were going to help and participate with the 'healing' when it was to occur.

It turned out that Treacle used to have narcolepsy himself when he was younger.

to be continued... 

In the beginning II

I should warn the reader that this blog is going to get weirder and weirder as I get more into the experiential side of things. At the moment I am simply laying the foundation and setting the context.

Having said that, I shall continue. My contracting of narcolepsy had greater ramifications for not just myself, but my parents as well. They had always been interested in spirituality. My father had been a personal friend of the sage Paul Brunton, whose early books 'A Search in Secret India' and 'A Search in Secret Egypt' inspired many to take up the spiritual path, and my mother for a long time wanted to enter a nunnery. Anyway, seeing me fall prey to such a debilitating disorder was very upsetting, and led them to some kind of spiritual soul searching. Consequently they ended up going to visit an Indian guru visiting the city. Inspired by this, they and soon myself started visiting the local ashram of this particular guru.

As part of this spiritual organisation there was a magazine, offering articles about various Hindu spiritual topics. One of these was about the shrine of the founder, located in the main ashram in India. In this article the healing properties of visiting this shrine were mentioned. This captured the attention of my parents, who hoped it might be what I needed. It wasn't long before the three of us were on our way to India.

Going to India and visiting an ashram was quite a novel experience for a ten year old. I had a great time. I don't really remember much about what happened when I went to sit in the shrine. My parents tell me that I fell asleep leaning against the wall, and reported that a bright light came to me. It is one of those early memories I will have to take their word for, as I can no longer recall it. Anyway, no miraculous healing took place. We ended up staying there for about two months during the monsoon season. It was a lucky time as we had daily contact with the guru and there were only a handful of people living there. (Now it is humungous). F

From this period onwards, I lived a kind of double life. On the one hand I was a semi-normal junior high school kid who attended top private schools in my city. Or I should say a kid who did his best to seem as normal as possible. Only the teachers knew about my sleep disorder. The meds which I gulped down during recess and lunch did a pretty good job of ensuring that I was functional. At the same time, I was a regular visitor to the ashram in my city, practicing meditation, chanting, yoga and studying the scriptures. The two worlds never crossed into one another.

About my academic abilities. I have always been good at the Arts. I used to love history, especially ancient history, and was good at English. Science and maths were my weak points, however. I never had a great mind for numbers. I think this may have something to do with difficulty concentrating and remembering. I was always happier writing essays than learning formulas. In high school, I managed to get out of maths, physics and chemistry altogether. The sciences I did like and engage in were the less numerical ones such as biology and geography. These I went well in.

So two or three times a week my parents and I would visit the ashram and participate in the evening programs. I had gotten used to the hypnagogic experiences and sleep attacks. We visited the ashram in India many times throughout my teenage years. When the rest of my school friends were going on summer camping trips and going to the beach, I was often in India working in the ashram, chanting, meditating etc. On one visit, the guru said to my parents about me that I should contact the Australian aborigines, and that they could heal me....

to be continued...

In the beginning

As you can guess by the title, I am a narcoleptic. I was diagnosed with this sleep disorder when I was nine years old. Unlike most narcoleptics, the symptoms manifested after I had a whiplash accident playing cricket with my friends. I jumped to catch the ball and was knocked out by an alsation with the same idea in mind. I was only out for a few seconds before getting up. I had a huge lump on my head which had suddenly appeared, even though I was in no pain. A trip to the hospital showed nothing was wrong, so life went on as usual.

It wasn't long before I started falling asleep everywhere and being lacklustre about things. I went from being a bright, energetic kid who was one of the top in my class academically and in sports, to being someone who struggled to keep my eyes open.

My parents noticed this with alarm and took me to see a number of different doctors and therapists in an attempt to find an answer. Most of them had no idea about how to recognise the symptoms of narcolepsy and it wasn't until about a year later that a doctor who I was undergoing dietary analysis with cottoned onto the symptoms and their associates such as cataplexy etc. and realised that I had narcolepsy. That was in the eighties. Unfortunately nothing much seems to have changed and people still suffer from misdiagnoses and mistreatment at the hands of doctors who should know better about a condition that effects one in two thousand people.

So I had the diagnosis and we knew what to work with. The standard treatment then and now is to treat it with stimulants. I went on a dose of dexamphetamines three times a day, as well as codeine. I used to have to visit the headmaster's office at recess and lunch and pick up my little orange bottle of drugs which I soon learned to down quickly and effortlessly. In general they worked well and allowed me to live a functional life and childhood. At lunchtimes I moved from the playground to the classroom, where I joined a group of kids playing dungeons and dragons. My parents were concerned that I might hurt myself if I played rugby, so I could only play soccer, the lesser alternative. I couldn't get the bus or train to and from school like the other kids, and was driven and picked up by my parents.

In addition to the narcoleptic sleep attacks, there is the associated condition known as cataplexy, which is the involuntary loss of muscle tone in the body. It is triggered by strong emotion, particularly laughter. To understand cataplexy one really needs to understand the relation of narcolepsy/cataplexy to dreaming. Some people define narcolepsy as the intrusion of REM into waking consciousness. REM is the state that the brain is in during dreaming, and with narcoleptics occurs almost immediately upon falling asleep. Most normal people have this occur later on in a different sleep phase. When we dream, a chemical is released and our bodies are paralysed and our mind/body connection is switched off so that we don't run around the room acting out our dreams. Cataplexy is the triggering of this same muscle switch-off mechanism, only it occurs when a narcoleptic experiences a strong surge of emotion, particularly laughter. If you watch the youtube videos of narcoleptic dogs, they get so excited when their food is brought out that they collapse from cataplexy. It is not falling asleep, which many people misunderstand it to be. It results in an embarrassing buckling of the knees, slackness of the jaw and facial muscles and collapse to the ground. My "friends" used to find it amusing the make me laugh and watch me "go drunk" and collapse. At the time I played along and kind of played the fool. In my experience during such cataplectic attacks I remained totally awake. I think it is uncommon for them to develop into a sleep attack, although I did learn how to do that later on.(another story).

Another symptom of narcolepsy is the experience of hypnogogic hallucinations which occur at the onset of sleep, when our consciousness shifts from waking to sleeping. It is this intermediary state where most people drift off and go unconscious. Narcoleptics don't go unconscious. They maintain awareness during this cross-over period. For most narcoleptics, and in the early days for myself as well, these are vivid and terrifying audio and visual experiences, often of scary demonic like beings hanging around the room and causing trouble. I used to have werewolf type nighmare scenarios happening and would scream out to my parents. My dad would come in and sleep on the floor next to me so I felt safe enough to go to sleep.

to be continued...