Well after SIX years of this s**t ... when I moved to America the existence of Narcolepsy was shut down. As was my reasonable ask for a prescription refill.
Let's take a look at your AHI I was told, (which was classed as an error in the UK). This I fought because I had a diagnosis of Narcolepsy and was being treated for it for 5 years! Nope it could not possibly be Narcolepsy I was told, I was told in a room full of CPAP machines to try it at least. Conclusion, with an AHI of 10.1 (down from 31 with no treatment) ... Diagnosis = mild sleep apnea. CPAP failed, horribly ... most likely because I have an upper airway resistance and not a complete blockage. Sure this may progress into apnea but I had 1 apnea the whole night of a sleep test done last year.
HYPOPNEA!! The H in AHI ... Damn Hypopnea, not Apnea.
I'm not overweight, I don't have apneas, I'm young with a history of asthma in childhood; but a year on from the OSA awakening I am recovering from a Tonsillectomy and correction of my severely deviated septum. I had breathing restrictions with no significant oxygen desaturations, they were called RERA's. I researched, found UARS (Upper Airway Resistance Syndrome), my consultant refused to accept UARS as a term, she wanted to advance my jaw forwards and called it 'severe' sleep apnea with an AHI of 10.1 ... I fought back against this lie and the need for such radical surgery as breaking my jaw for a mild case of OSA and was banned from the clinic as a patient as a result.
So with a diagnosis of mild sleep apnea (AHI 10.1 ... HI = 8!!) and a new hospital entirely, we progressed towards surgery to clear out some space in my airways and I'm hoping that my AHI will come below 5 which will be a cure! If I get an AHI 4.5 this whole mess will be cleared up and I can DRIVE again!!
It has been an awful journey, but I am with a physician now who will listen to me and not try to push CPAP. I can breathe so much better now my nasal passages have been widened. A simple deviated septum!! Who knew?
Friday, 6 May 2016
Monday, 11 July 2011
Provisional Diagnosis of Narcolepsy
Unfortunately things move slow in our health service, but just before Christmas I was given a provisional diagnosis of Narcolepsy, following some detailed tests. The MSLT measures how long it takes to fall asleep given the opportunity of a nap.
The Multiple Sleep Latency test, showed :
I fell asleep within 90 seconds at 9am and as it is my sleep attacks come on roughly every three hours, so if I wake at 6am for a normal day in the office, by 9am I'm having a sleep attack.
More Sleep Apnea Tests
I was sent for more apnea tests, to make sure for certain that there are no other sleep disorders involved. My overnight hospital test results showed that I had an AHI of 30, which indicated *severe* sleep apnea.
However upon doing another pulse oximetery test and seeing a sleep disordered breathing specialist, it was pretty clear that I do not have sleep apnea. This guy admitted that my breathing pattern in the night, matches with a typical rapid shift into REM sleep too early. Something is adding up!
More Narcolepsy Tests
Based on all of this we needed to be certain that I do have Narcolepsy and so I was sent for a spinal fluid test at the start of the year, I'm still waiting for these results. The test looks for a chemical in the brain called Orexin, which is lacking in people with Narcolepsy. I've already tested positive for the gene responsible for Narcolepsy.
Pharmaceutical Cocaine
Just before Christmas then I was changed up from Modafinil to Methylphenildate, which acts on the brain in a similar way to Cocaine. Initially I felt a state of euphoria, which did subside as my body got used to the new stimulation to keep me awake. It's so hard to get this medication from my pharmacy and in the early days I was falling asleep while they figured out if I was allowed to have this medication.
You guys may know this medication as Ritalin.
All in all then, anyone would have to be insane to suggest that I don't have Narcolepsy, that I'm making all this up and that this isn't real. I await for the Orexin results and hopefully before the summer is over I can get this medicated. It will allow me to return to work and to gain my driving license back ..... although my struggle for a diagnosis may be coming to a close a whole new battle to get society to accept my disorder is about to begin and that's the part that worries me the most.
The Multiple Sleep Latency test, showed :
- 3 sleep onset REM events
- A minimum sleep latency of 90 seconds
- Average sleep latency of 4 minutes
I fell asleep within 90 seconds at 9am and as it is my sleep attacks come on roughly every three hours, so if I wake at 6am for a normal day in the office, by 9am I'm having a sleep attack.
More Sleep Apnea Tests
I was sent for more apnea tests, to make sure for certain that there are no other sleep disorders involved. My overnight hospital test results showed that I had an AHI of 30, which indicated *severe* sleep apnea.
However upon doing another pulse oximetery test and seeing a sleep disordered breathing specialist, it was pretty clear that I do not have sleep apnea. This guy admitted that my breathing pattern in the night, matches with a typical rapid shift into REM sleep too early. Something is adding up!
More Narcolepsy Tests
Based on all of this we needed to be certain that I do have Narcolepsy and so I was sent for a spinal fluid test at the start of the year, I'm still waiting for these results. The test looks for a chemical in the brain called Orexin, which is lacking in people with Narcolepsy. I've already tested positive for the gene responsible for Narcolepsy.
Pharmaceutical Cocaine
Just before Christmas then I was changed up from Modafinil to Methylphenildate, which acts on the brain in a similar way to Cocaine. Initially I felt a state of euphoria, which did subside as my body got used to the new stimulation to keep me awake. It's so hard to get this medication from my pharmacy and in the early days I was falling asleep while they figured out if I was allowed to have this medication.
You guys may know this medication as Ritalin.
All in all then, anyone would have to be insane to suggest that I don't have Narcolepsy, that I'm making all this up and that this isn't real. I await for the Orexin results and hopefully before the summer is over I can get this medicated. It will allow me to return to work and to gain my driving license back ..... although my struggle for a diagnosis may be coming to a close a whole new battle to get society to accept my disorder is about to begin and that's the part that worries me the most.
Monday, 29 November 2010
EEG and Banned From Driving
Well, I've had the weekend to recover from not sleeping well during the overnight tests, my sleep paterns still aren't back to normal. The two night EEG was horrible, with all those wires superglued onto my skull, the glue felt like deep heat and the wires kept tugging my head everytime I moved.
The staff were lovely and worked in shifts, we were always well fed and warm, I shared a room with another person undergoing sleep tests. In general comfortable enough but very un-nerving as CCTV cameras watched us for the entire time and I could hear the whiring of the camera as I moved around from bed to loo.
I've managed to get all the superglue out of my hair now, but am refraining from getting a hair cut as I have to go through it all again this Thursday for my Multiple Sleep Latency Test (MSLT).
On returning home after these tests I had a letter from the DVLA saying that they had come to a decision about my driving license and that it is to be revoked. I had three days notice and have since taxed the car off road! For the time being it hasn't really affected me to know that I can't drive at all for the foreseeable future, because I'm so pre-occupied with getting the diagnosis and evidence together for the Employment and Support Tribunal.
With the cold weather we are having in the UK at the moment, bed seems to be the best place to be under cover in the warm and with flickring candles and christmas tree lights to keep my spirits up. It's getting closer to being real this whole Narcolepsy thing.
The staff were lovely and worked in shifts, we were always well fed and warm, I shared a room with another person undergoing sleep tests. In general comfortable enough but very un-nerving as CCTV cameras watched us for the entire time and I could hear the whiring of the camera as I moved around from bed to loo.
I've managed to get all the superglue out of my hair now, but am refraining from getting a hair cut as I have to go through it all again this Thursday for my Multiple Sleep Latency Test (MSLT).
On returning home after these tests I had a letter from the DVLA saying that they had come to a decision about my driving license and that it is to be revoked. I had three days notice and have since taxed the car off road! For the time being it hasn't really affected me to know that I can't drive at all for the foreseeable future, because I'm so pre-occupied with getting the diagnosis and evidence together for the Employment and Support Tribunal.
With the cold weather we are having in the UK at the moment, bed seems to be the best place to be under cover in the warm and with flickring candles and christmas tree lights to keep my spirits up. It's getting closer to being real this whole Narcolepsy thing.
Monday, 22 November 2010
Real Sleep Tests!
Hurrah! This week, finally I'm getting some proper overnight full on video camera, wired into the grid sleep studies done which mean living in a hospital for a few days.
My journey to wonderland is quite horrific but I guess typical of the frustrating expereince of being seen by doctors who don't know what they are dealing with (they openly admit this) and a disorder that isn't showing the thing most often thought of in the minds eye; collasping when laughing. I don't do that and that's why it's taking over two years to answer the question - "what's wrong with you".
12 doctors, who I won't name obviously have looked at it and shrugged, a couple have said "you have Narcolepsy, we just don't have the evidence to say you do". It's so frustrating, particulary when nobody who you are looking to for support, believes you, or won;t help you because you can't explain or they can't understand.
So mid-week, this week I'm in for Polysomn tests the works and a week after that I'm in for a Multiple Sleep Latency Test and a week after that I get the results a week before my 30th birthday, nice!
Fingers crossed, it's not obvious that I have Narcolepsy and Hypersomnia will do for the time being, I JUST need a word, one word to make other people accept that they SHOULD help me that I can't do this on my own and I do need their understanding. I could also do with some back up, because nobody really believes I have Narcolepsy without Cataplexy. Maybe 2011 will change all that, I'll have a word that people can go home google and come back to me and say they have verified my condition for themselves and believe it exists.
My journey to wonderland is quite horrific but I guess typical of the frustrating expereince of being seen by doctors who don't know what they are dealing with (they openly admit this) and a disorder that isn't showing the thing most often thought of in the minds eye; collasping when laughing. I don't do that and that's why it's taking over two years to answer the question - "what's wrong with you".
12 doctors, who I won't name obviously have looked at it and shrugged, a couple have said "you have Narcolepsy, we just don't have the evidence to say you do". It's so frustrating, particulary when nobody who you are looking to for support, believes you, or won;t help you because you can't explain or they can't understand.
So mid-week, this week I'm in for Polysomn tests the works and a week after that I'm in for a Multiple Sleep Latency Test and a week after that I get the results a week before my 30th birthday, nice!
Fingers crossed, it's not obvious that I have Narcolepsy and Hypersomnia will do for the time being, I JUST need a word, one word to make other people accept that they SHOULD help me that I can't do this on my own and I do need their understanding. I could also do with some back up, because nobody really believes I have Narcolepsy without Cataplexy. Maybe 2011 will change all that, I'll have a word that people can go home google and come back to me and say they have verified my condition for themselves and believe it exists.
Learning Meditation
This past week or so, I've had wonderfull guidance on how to meditate, which wasn't planned at all, turned out rather well and could be a powerful way of managing my "mystery illness" (Narcolepsy). I went into it not knowing what to expect, perhaps the odd tip or two but I wasn't expecting to be meditating.
Turns out Narcoleptics may have an innate ability to enter a trance state easily. Who'd have thought it eh?
In the local area there are free taster courses being offered at the moment, in the vein of brick laying, learning how to eBay and a few that caught my attention; Overcoming Insomnia and Managing Anxiety. Being that I'm having ongoing battles with both these things, I can't sleep and am falling asleep in the day uncontrolled and the medication increases anxiety levels. Perfect. Really helped me find another way to manage my, for want of a better description; Narcolepsy (diagnosis still pending).
Our tutor was amazingly calming and in a very calming and soothing room we were taken on guided meditation, through visualisations and suggestions of relaxing scenes. I had tried guided meditation before and use a hypnosis iPhone app occasionally so I found myself taking to this well.
We were taught how mediation is a state inbetween sleep, just before sleep. Well ok this must be second nature for a Narcoleptic, the hypnogogic state. I found my hypnic jerks occured stronger, they aren't painful at all. I also found that I was able to see the blue colour, flasehs of blue balls and add a LOT of texture and context to the visualiations. My dreams are mostly postitve and have been set in places such as a beach and a safe coloured cave so I was able to be taken back to those places through this guided mediation.
What I'm Hoping This Will Do For Me
Not only through breathing do I hope to be a bit calmer and take the edge of emotions that do make me sleepy (disclaimer; I haven't been diagnosed Narcoleptic yet), I hope that through guided visualisations I can have my REM sleep in a controlled scheeduled way.
I'm hoping that setting time aside each day to control what my "sleep disorder" wants to do randomly may in fact help limit that horrible and sudden "sleep now" feeling. I'm hoping that I can hypnotise myself for want of a better way of putting it at night so I can be rested properly and be less tired the next day. So far modern medicine hasn't been able to help, but I feel somewhere inbetween the two worlds, there's something that can help me make peace with my Narcolepsy let's say and move on, go back to where I started before my brain started shutting down into sleep in the day.
Turns out Narcoleptics may have an innate ability to enter a trance state easily. Who'd have thought it eh?
In the local area there are free taster courses being offered at the moment, in the vein of brick laying, learning how to eBay and a few that caught my attention; Overcoming Insomnia and Managing Anxiety. Being that I'm having ongoing battles with both these things, I can't sleep and am falling asleep in the day uncontrolled and the medication increases anxiety levels. Perfect. Really helped me find another way to manage my, for want of a better description; Narcolepsy (diagnosis still pending).
Our tutor was amazingly calming and in a very calming and soothing room we were taken on guided meditation, through visualisations and suggestions of relaxing scenes. I had tried guided meditation before and use a hypnosis iPhone app occasionally so I found myself taking to this well.
We were taught how mediation is a state inbetween sleep, just before sleep. Well ok this must be second nature for a Narcoleptic, the hypnogogic state. I found my hypnic jerks occured stronger, they aren't painful at all. I also found that I was able to see the blue colour, flasehs of blue balls and add a LOT of texture and context to the visualiations. My dreams are mostly postitve and have been set in places such as a beach and a safe coloured cave so I was able to be taken back to those places through this guided mediation.
What I'm Hoping This Will Do For Me
Not only through breathing do I hope to be a bit calmer and take the edge of emotions that do make me sleepy (disclaimer; I haven't been diagnosed Narcoleptic yet), I hope that through guided visualisations I can have my REM sleep in a controlled scheeduled way.
I'm hoping that setting time aside each day to control what my "sleep disorder" wants to do randomly may in fact help limit that horrible and sudden "sleep now" feeling. I'm hoping that I can hypnotise myself for want of a better way of putting it at night so I can be rested properly and be less tired the next day. So far modern medicine hasn't been able to help, but I feel somewhere inbetween the two worlds, there's something that can help me make peace with my Narcolepsy let's say and move on, go back to where I started before my brain started shutting down into sleep in the day.
Wednesday, 4 August 2010
Inception and Layered Dreams
I went to see the movie, Inception this past week and I was very impressed, not only with the effects but also the plot surrounding dreams.
Here's a short summary from IMDB.com:
"Dom Cobb is a skilled thief, the absolute best in the dangerous art of extraction, stealing valuable secrets from deep within the subconscious during the dream state, when the mind is at its most vulnerable. Cobb's rare ability has made him a coveted player in this treacherous new world of corporate espionage"
I found the movie to be very interesting in terms of dream construction and lucid dreaming and got me thinking about how vivid and real my own dreams can feel. Real places but with seemingly unreal attributes. Then the whole thing about layered dreams and having an object you can check to see if you are dreaming or not, blew my mind. It was thrilling watch!
If you can get to see it, it's worth the watch, a bit slow to get going but there are elements I think Narcoleptics will enjoy.
Here's a short summary from IMDB.com:
"Dom Cobb is a skilled thief, the absolute best in the dangerous art of extraction, stealing valuable secrets from deep within the subconscious during the dream state, when the mind is at its most vulnerable. Cobb's rare ability has made him a coveted player in this treacherous new world of corporate espionage"
I found the movie to be very interesting in terms of dream construction and lucid dreaming and got me thinking about how vivid and real my own dreams can feel. Real places but with seemingly unreal attributes. Then the whole thing about layered dreams and having an object you can check to see if you are dreaming or not, blew my mind. It was thrilling watch!
If you can get to see it, it's worth the watch, a bit slow to get going but there are elements I think Narcoleptics will enjoy.
Tuesday, 27 July 2010
Book Recommend - Tired But Wired
I picked up a book a few weeks back that is proving to be really useful in understanding what sleep is and what things can be done to improve it. Now Narcoelpsy isn't like Insomnia, it is but it isn't, what it is, is incurable. Basscially anything that can actually improve the symptoms is better than nothing.
It's called "Tired But Wired", and it contains a toolkit which includes how to wind down, how to relearn the art of falling asleep. What it however skips over is Narcolepsy. It's not a book for Narcolpetics, but it may offer us some insight into the things we can do to help ourselves manage particulary at night with sleep hygiene.
The chapter on power napping and pre sleep yoga, I found to be most useful.
It's called "Tired But Wired", and it contains a toolkit which includes how to wind down, how to relearn the art of falling asleep. What it however skips over is Narcolepsy. It's not a book for Narcolpetics, but it may offer us some insight into the things we can do to help ourselves manage particulary at night with sleep hygiene.
The chapter on power napping and pre sleep yoga, I found to be most useful.
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