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Could I Have Narcolepsy?

4 posts in this topic

Hi, I've been trying to read up on the subject myself, but there's a lot of conflicting information on the web, so thought it would be helpful to get some advice on the matter on a forum such as this.


I've had a health issue for the last 20 or so years. I was diagnosed with CFS about 12 years ago. The diagnoses of CFS is an unsatisfactory process, no diagnostic test exists, and I know many with it who have subsequently been found to be suffering from something else entirely.


When initially trying to understand my illness, I felt narcolepsy stood out, but I ruled it out because I understood its main symptom appeared to be sudden episodes of cataplexy - something I've never had. But recent events caused me to re-investigate the issue, and I've read it's possible to have narcolepsy without cataplexy.


I'll try and summarise my symptoms and history and hopefully avoid being overly verbose.


1) Began with no obvious cause - some speculation of infection/virus may have been involved in it both initially and during a major relapse, perhaps stress as well, but nothing definite.


2) Has fluctuated, I've had periods of improvement, followed by relapses. Can narcolepsy follow this pattern or is there a consistency to it?


3) Sleep problems - varying from a total inability to sleep for a day or more at a time, a difficulty staying asleep, and and difficulty recovering from have been asleep. Since the onset of my ill health I, to varying degrees, have had a lot of trouble properly waking up, which no amount of coffee guzzling can seem to help with, and can last half the day.


4) Hynogogic Hallucinations - had an isolated one before I felt the onset of any illness - visual. On the point of going to sleep. a man dressed in black broke into my window and was about to attack me (no such thing happened of course). They became pretty frequent after the definitive onset of ill health. Mostly auditory, though some physical sensations as well - I once felt my body being sucked into the middle of my bed at the point of sleep. They subsided when I experienced a period of improvement in my health, and began to recur again following a major relapse about 12 or 13 years ago.


5) Sleep paralysis - These became a particular problem after I suffered the major relapse mentioned above. There was a particular recurrent episode I had countless times, initially it began like a hypnogogic hallucination - which I was able to "catch" sometimes and prevent it continuing.. But if I didn't, it would continue and became an extended nightmare, where I was conscious but asleep, and I began - this may sound bizarre - to levitate above my bed, and my body began to start rapidly rotating around in all kinds of implausible ways. I felt the sickness and even pain associated with such physical contortions - I was aware of what was going on and desperately trying to snap out of it. I was aware it was not real... but yet at the same time it felt entirely real. I'd say they went on for 15 minutes, 30 maybe or more. It's difficult to say.


6) Fatigue and brain fog. My complete lack of energy and the brain fog I experience - constantly to a varying degree for last 20 years - is what led to my diagnoses of CFS .(That and the muscle pain I experience, particularly in my legs.) It was even there during my longest period of remission. But it was more manageable then. It has always been the case that my energy and mental alertness have increased notably towards the end of the day, even to the point of feeling somewhat hyper, with a million different thoughts going through my head.


7) Seizure - This happened out of the blue recently. It lasted between 6-8 minutes said the person who witnessed it. It was a full on tonic-clonic seizure. I had an EEG and MRI scan recently and have the follow up appointment later this month - are seizures associated in anyway with narcolepsy?


8) I have an almost constantly feeling of unreality - it's hard to explain. Sometimes I feel like I'm seeing the world through the lens of an old cine film.


Finally, is there a definitive test to determine whether or not I could be suffering from Narcolepsy? I ask this because the fact there isn't for CFS causes doubts in your own mind about what is really wrong with you, and, worse, doubts in other people's mind - about whether you're really ill at all indeed.


Sorry for that being so much longer than I intended and thank you to anyone who took the time to read it all and comments in any way.

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Prolonged insomnia is often a symptom of narcolepsy, though sleep inertia, the inability to recover from sleep, is generally considered more indicative of idiopathic hypersomnia. That is not to say that narcoleptics do not experience sleep inertia. The inability to stay asleep is frequently a symptom of narcoleptics, who often have fragmented nocturnal sleep.


HH and SP are both typical symptoms of narcolepsy.


Seizures are not at all a symptom of narcolepsy. Cataplexy can appear something like a seizure, but it is a loss of muscle tone not a seizure. Full body cataplexy can happen very quickly without much warning. During a full body cataplexy you generally remain conscious even though you cannot speak or move. If it continues long enough it can lead into a sleep attack. The sense of time can be very much distorted during the cataplexy. At no time do the muscles tense or convulse.


Varying amounts of depression are absolutely a common thing with people who suffer from chronic health issues. When those issues affect sleep, and fatigue they can mimic or worsen depression as well. 


Fatigue and brain fog are the constant companion of the narcoleptic. They can leave you feeling like you are living your life through someone else's eyes or the lens of an old camera as you have mentioned. Until I was finally diagnosed, and started to get some treatment I fought that feeling for about a decade.


There are few definitive tests. There is a genetic test, but that is not fool proof. Not everyone with the gene develops narcolepsy, and not everyone with narcolepsy has the gene. 


They can do a spinal tap to check your level of orexin (also known as hypocretin) the neurotransmitter that narcoleptics lack. It is the lack of orexin cells in the hypothalmus that leads to narcolepsy. This test is also not foolproof unless there is a complete lack of orexin. The total lack of orexin is most indicative of narcolepsy with cataplexy. Like many body processes what is normal for one person may be abnormally low for the next, or vice versa. Also, it is a potentially dangerous procedure that has a certain level of risk.


The usual test for narcolepsy is the MSLT multiple sleep latency test. This test is performed after a PSG (polysomnogram) at night. You are given the chance to take a 20 minute nap every two hours for a total of five naps. If the mean latency is less than eight minutes, and there are at least two SOREMs (sleep onset REM episodes) the diagnosis of narcolepsy is indicated if the symptoms of EDS, HH and SP are present. Cataplexy is not necessary for diagnosis.

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Thanks for your response minitron. I've spent the last couple of days trying to read up on everything. I'm certain now my health problem is a sleep related disorder of neurological origin that began around the age of 19. Be it narcolepsy or something else.


The CFS diagnoses was made as much to get me to leave them alone rather than through any thorough investigation. It may well be right, I increasingly doubt it though. Doesn't really change my situation greatly if it were narcolepsy or CFS - both are difficult to treat, which doesn't look likely to change any time soon.


But yet sleep... it's been common factor throughout. It's been more hypersomnia of late. I got stuck in a rut for a couple of months of going to bed at around 6AM and not really getting up till 6PM. Just couldn't seem to come out of it.


I could have had a cataplexy fall which conceivably knocked me out and triggered a seizure. I highly doubt that though. I live a zen like existence because getting overly anything at all emotionally simply exhausts me and puts me back in bed. That would not be my definition of cataplexy though. No point interpreting things to suit a diagnoses.


I guess I'm gonna quit taking my amitriptyline and let all my symptoms come to the fore. I missed a dose of it the other day which probably caused the severe sleep paralysis episode that occurred. 


Sorry, I'm just kind of rambling and trying to figure things out myself.

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That feeling of exhaustion triggered by strong emotion can actually be a type of cataplexy. At its root cataplexy is your brain trying to enter REM when you are stimulated by a strong emotion. Amitriptyline is a tricyclic antidepressant that is used to help suppress REM and treat HH, SP and Cataplexy. I actually take protriptyline which I think is no longer sold in the UK. Protriptyline is less sedating than amitriptyline. I can't take amitriptyline or nortriptyline as they both give me bad side effects.

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