Sleepiness, Other Causes
Posted 30 August 2013 - 07:13 AM
Just wanted to mention to you all that if you have any level of sleep apnea, even very mild (as low as 10 RDI/hr) that you insist on getting treated for it even if they say they don't treat that low level of sleep apnea. In my ignorance, I thought "well, I have narcolepsy, so sleep apnea is just a drop in the bucket and treating it won't make a difference." I lost weight to clear my sleep apnea and felt a lot better because I got better quality sleep at night once it was gone.
Also, I think it's important to treat any other possible causes of excess sleepiness.
Get your Vitamin D checked. Even if you take a multivitamin, it only provides you with 800 IU as the daily recommended value per day, and that is only enough to get you the very lowest number in the healthy range on a blood test. My doctor said to take an extra D supplement to get 2000 IU per day.
Get your thyroid checked. Not just the standard TSH and Free T4, but also for autoimmune anti-thyroid antibodies.
Thanks for reading. If anybody else knows other medical causes of EDS, please feel free to add.
Posted 30 August 2013 - 07:19 AM
Posted 30 August 2013 - 07:25 AM
Numerous things can lead to Excessive Daytime Sleepiness, and many of them have nothing to do with issues that occur during sleep (e.g. anemia.) One issue I ran into was that once you have a diagnosis of narcolepsy, physicians will either consciously or subconsciously attribute 100% of your fatigue to narcolepsy, and so they'll stop seeing it as a symptom to consider unless you nag them about it and ask them directly "What else could be contributing to my fatigue?"
Posted 30 August 2013 - 09:29 AM
Posted 30 August 2013 - 09:33 AM
my GP says I'm tired because of low b12. clearly that's the explanation.
Posted 30 August 2013 - 12:10 PM
Hank, low vit. d also contributes to depression which causes tiredness.
You bet. My low vit D was detected before my diagnosis. I was told I needed to be outside more, although I am light skinned, don't wear sun screan and spent that summer training for a triathlon outdoors and was tan (for me). Some of my symptoms were attributed to low vit D and muscle fatigue. It all got very backward and I did not fit the mold for N because I exercised too much for a sleepy person. Overcompensating got in the way of my diagnosis and made for a very confusing clinical picture.
I was also borderline diabetic, so the advice was to lose weight and exercise more- although, again, I was training for a flippin' triathlon 6 days a week and weighed 185 at 6'3". I was also told to reduce my "high carb diet" which was already low carb and high protein.
For a while I was following too much random advice which drove me kind of bonkers. I believed that my lifestyle choices were the cause of these unrelated quirks. My lifestyle choices were actually keeping me from being worse off than I was.
Nothing made sense and seemed very opposite until the N diagnosis was made. Then it all made sense. So much sense, that it confused the heck out of me. I had been trying so hard to be well that learning I was an overachieving Narcoleptic was kind of devastating. I felt like the fastest kid in special olympics- that was a very false assumption. Since then, I am a lot easier on myself. I am not alone and there are other people with N who do the same things I do- and others who don't. We are all different with one big thing in common. We all manage it differently and it impacts each of us differently.
My hair texture improved with vit D supplements- softer and less coarse. Anything that can help is a plus.
Posted 30 August 2013 - 01:40 PM
Livi, I hear ya on the sleep apnea. However, in my (maybe) unusual case of having 'Idiopathic Central Sleep Apnea' (minimal AHI-11 at the first polysomnography and 9 months later after treatment -failed- it was moderate AHI-22); the path was severely painful. My Cataplexy increased dramatically, from about 5 a month to anywhere from 5 to 20 a day, increasing soon after beginning the treatment that consisted of first the CPAP, then the BiPAP and for the most time, 6+ months, the VPAP ASV... Those Cataplexy numbers refer to collapses during Cataplexy, the number of minimal ones was way beyond counting.
The neurologist was not hearing me, or perhaps listening to me, as I explained all of the troubles, and especially the Cataplexy increase. The sleep lab was at a hospital (I live in a small, yet not tiny, college town in the Midwest), and it was in my opinion (especially now years later) of 'low' quality in their interpretations and procedural maneuvering. I could go on and on.
Finally near 6 months into this, I'd had enough, due to both the broad difficulties with tolerating the machine/s due to ENT (allergies, sinusitis, rhinitis and middle ear matters) and the Cataplexy increase, not to mention feeling totally neglected; I set up an appointment at Mayo Clinic, which 3 months later arrived at. It took 3 weeks up there, but I got the confirmations of it being Cataplexy, as well as their recommendation of 'the machines not benefiting me and to discontinue'.
I know that they help very very many people, but I was unlucky (I guess). I'm not telling anyone to avoid treatment, just be sure you have 'qualified' doctors and sleep labs, which whom you deal with.
Maybe some day in the future, I'll somehow manage them, but only when things get to such a bad point that it is the only option left. Changing my diet up, along with other 'lifestyle adjustments' has definitely helped. I have a overnight 'pulse oximeter' that I use now and then to gauge how my blood saturation levels and heart rate are, during a night. So far, I'm doing way better than I'd been doing, so I'm optimistic. Yet, sleep apnea sucks, and combined, Narcolepsy with Cataplexy, definitely is rough; sleep is crap and energy is rare.
Posted 30 August 2013 - 05:34 PM
Not sure why treatment of any kind of apnea would increase cataplexy episodes either, but it's likely that the --PAPs don't help people with Central.
I'm not knowledgeable at all about the contents of your post, but hopefully others are! Hang in there.
Posted 30 August 2013 - 05:49 PM
It's all good Livi!
Sorry I had to dive into, trying to have, understanding because things were not working out, I'd been convinced of something then let go and down hill I went.
A bit on the lingo:
AHI = Apnea hourly index. Minimal is less than 15 an hour (I've read treatment for minimal should not involve a machine), Moderate is 15-28 or 30 an hour, Severe is beyond 30 an hour...
Machines are CPAP (continuous positive airway pressure), BiPAP (bilevel positive airway pressure), and VPAP ASV (ventilator positive airway pressure adapt-servo ventilator).
The VPAP ASV is the more advanced machine and is used primarily for Complex and Central Apnea matters. The CPAP and sometimes the BiPAP are used for Obstructive Apnea matters.
Idiopathic Central Sleep Apnea is 'central' (miscommunication between respiratory 'breathing' muscles and brain) in nature and with 'idiopathic' meaning, of unknown reason/s.
However 'Central Apneas' tend to be related to neurological disorder/s and brain stem matters (for instance an injury could be behind it, or developmental skeletal/muscular..).
I'm alright not diving into it all (especially the medical field/realm) further, as long as I can maintain tranquility without any drugs and/or a ventilator machine (with or without oxygen); as for now again, I am maintaining, pretty much fine. [Fingers crossed]
Posted 30 August 2013 - 06:54 PM
Why don't you want drugs for N? I am considering starting modafinil or adderall but not sure if I should go the drug route either... I guess that's for a different forum.
Posted 30 August 2013 - 08:28 PM
I believe RDI is actually sort of different than AHI, but very much in the same arena. Hypopneas are rather some sort of inconsistent breathing; for instance either too much or too little, oxygen (O2) or carbon dioxide (CO2). RDI describes such, as AHI are specific to Apneas were you actually stop breathing for at least 10 seconds. That is to say, there is a difference. There's also 'restless leg syndrome' which falls into another area, within more or less the same 'sleep disturbances' arena...
I should not have been put on the machines, IMO (articles I've read support that, even to an extent your case; it all comes down to a wise sleep lab and doctors..).
Pretty sure it was the machine, in combination with my ENT/allergy/middle ear/headache issues, which combined. The Cataplexy definitely escalated over the exact same time frame as the 9 month treatment, and began regressing promptly after discontinuing the treatment. It was clear to me, and with the fact they told me to discontinue use, that further made it clear to me. However, they would not comment directly upon it being related to the Cataplexy, "that's interesting, thanks for telling us" was the only response directly which I received. Months to a year after discontinuing, I was more or less back to were I'd been prior. Then, changing my diet up and doing many other 'Lifestyle Adjustments' I reached an even better place, with less Cataplexy.
Could have been a total fluke, unusual and unique occurrence? Not the first in my history with medical ordeals (almost died at 2-4 months old from seizures being caused by 'what doctors couldn't figure out until I went to Mayo Clinic' Severe Hyperinsulinemia Hypoglycemia which required a 90+% removal of my pancreas which had an overgrowth of insulin producing islets -does such relate to Narcolepsy and perhaps my apnea?-) [I got very lucky]...
As for why I don't want drugs for N. That is a bit of the wrong wording.
I'd love something that actually worked.
First and for most, that works for me without terrible side effects (my experiences with them, has not been good, the positive must outweigh the negative, IMO).
Secondly, something working directly upon the actual underlying factors of what Narcolepsy is caused by (supposedly the lack of the neurotransmitter).
And Thirdly, something that I wouldn't necessarily have to take every day for the rest of my life.
I'd like to stay at whatever point in the alphabet, that I'm already at and not find myself many points down it; for instance I may be at point M today, this is after starting at around point I or J, at my first polysomnography, which is to say I was in a different place prior to but with Narcolepsy it seems there's always variations of varying degrees across the symptoms and progression/regression, of it.
I'll admit that I am quite stubborn, though!