Reply To: Where do you start?

Hi there, sorry you’re here but welcome anyway. I was waiting for natdoc to chip in because there is someone else you just went through something similar to this but their mslt was cancelled.

MSLT cancelled after PSG

Your priority is the sleep apnea and THEN the next step will fall into place. Good sleep hygiene and generally taking better care of yourself will greatly help as well. Lots of info under Non Rx Strategies.
Keeping a very simple diary of Sleep/Diet/Feeling will also help you to notice patterns for days when you feel good… or not.
Best of luck in your journey and please let us know how you’re doing. We all learn from each other.

Reply To: Where do you start?

Hi and welcome to the forums. As I was reading through your post I notice that you said you were diagnosed with sleep apnea and narcolepsy in December. I am wondering how severe was the sleep apnea? was it severe enough to start CPAP? How was your diagnosis made?
Have you already been using CPAP for 30 – 60 days?
Do you recall the results of your overnight test and MSLT?
Im just a little curious, generally it is very difficult to diagnose Narcolepsy in the presence of sleep apnea, and generally speaking at least in my experience, sleep apnea is treated for 30 – 45 days prior to completing an MSLT.
I hope you find the help you seek on these forums, there are some extremely experienced and intelligent folks here.
All my best

Reply To: Where do you start?

Welcome to the forums…I always feel a bit odd in saying that because of the reason that brings one here. With that being said, I hope that you will find support and information that is helpful to you as you begin to navigate through acceptance and your options while moving forward. When I was looking for answers, I found the experiences of others to be extremely helpful. I searched through research as well as personal accounts. For me, the forums have provided support and knowledge through the experiences of others who have faced similar struggles.
I’m not sure if you have cataplexy, but that eventually became the undeniable symptom for me. I had “sleep issues” from childhood and just accepted a lot of things as “normal” in that I don’t remember anything being any different in terms of my sleep or sleepiness. Now that “I know what I know” or in light of that, so many behaviors and choices through the years make sense.
A few things that I have learned along the way…strictly my opinions.
(Inserting my disclaimer…I am not a medical professional.)
Although our symptoms may be similar, the severity and frequency of those can vary greatly between individuals. This is true even within my own life in dealing with this disease on different days or during different periods of life.
What works for one person may not work for another. It seems that each person has to work towards a “balance” of what helps between healthy lifestyle choices and medications. This combination may change through the years.
Since there is currently no cure, we seem to always be working towards a level of functionality by treating or coping with our symptoms. Some days are better than others. 🙂
Unfortunately, I think that the way in which narcolepsy has, at times, been portrayed has led to a lot of misconceptions. I wouldn’t fall asleep in random places or at “inappropriate times” as you mentioned either. Perhaps, it was that I wouldn’t let myself fall asleep and I was one of the ones who was fortunate enough to be able to fight that sleepiness through remaining active along with the consumption of too much caffeine. I developed coping behaviors without even realizing it. For years, when I came home from work I would tell my husband how I felt so tired/sleepy. My husband would ask, “Why don’t you just sit down for awhile?”
My standard response was…”If I sit down, it’s all over.” I knew if I slowed down or stopped, that was it for me. When I did crash, I could fall asleep and be immediately dreaming. My husband could be talking to me one moment and the next I was out.
I’m not sure that any of the above will be helpful to you, but I do wish you the best as you are searching for answers. You have come to a good site that will hopefully be as helpful to you as it has been to me. Please feel free to ask more questions and keep us updated. Each person’s voice is important on this journey.

Reply To: Finding a new doctor

I used the process of elimination: going from doctor to doctor until I found one with whom I felt comfortable. It took some time, but it was worth it. That was based upon advice from a different specialist; she told me if I felt something wasn’t right with my health, to pursue it until I found a doctor who believed me (…and then my fatigue was eventually diagnosed as narcolepsy).

Reply To: Exercise and Fitbits

So update I now have an Apple Watch (series 4) and first thing I will say is they are ridiculously expensive and while it does have plenty of fancy and unique features it does not have built in sleep tracking which I find to be completely unacceptable but I was aware of this beforehand and I am using both the Pillow and Autosleep apps for sleep tracking through the watch. They work but I miss the sleep tracking on my Basis Peak for sure as well as the 4 day battery life compared to 16 hours with the Apple Watch. Fitness tracking works well so far. I used it to track a 45min bike ride I did the other day and my only complaint is that even when you tell it you are cycling it will still count what it perceives as steps so I went from probably 4000 or so to 11000 steps without taking a single step so that is pretty dumb. I had to go into the steps data and delete the steps during the time I was riding the bike.

If you don’t want to spend a bunch of money on something like an Apple Watch or Fitbit (and I dont blame you my old watch was less than half the cost of this watch) then I would recommend checking out the Amazfit Bip . It does fitness, sleep tracking, heart rate, gps, notifications, etc. and has a glorious battery life of 30+ DAYS!!!…. that is not a typo, thirty days otherwise known as a month….. and if that wasn’t enough in its favor the price of this watch is only $80. Here is a review of it. Personally I would wait and buy the upcoming Amazfit Bip 2

In regard to the original questions about fitness routines as of right now I have just been doing the 10k steps a day goal with an occasional bike ride or some other relatively minor workout in conjunction with using the MyFitnessPal app to track meals in order to lose some weight and eat healthier. However once I get back into a bit better shape I plan on doing P90X to really get into shape and I am looking forward to using my watch to track that. I am going to sound like a salesman again but if anyone is looking to lose weight and wants to know what to do as far as exercise and perhaps doesn’t want to go to a gym then get a Bowflex TreadClimber or a Bowflex Max Trainer. We used to have the former (unfortunately my mom sold it) and I had a binder where I would log my workouts which included time and calories burned (according to the machine)… So the other day after I had done that 45min bike ride (which according to my watch was worth 190 calories) I decided to cross reference that with the logs I had from the TreadClimber and for the same amount of time as my bike ride I burned 500 calories compared to 190 and all you do on the TreadClimber is walk. I believe the max speed is literally like 4mph. The Max Trainer is more effective than that though I believe it is also harder. For instance a 15 minute workout on the Max Trainer M3 is worth 280 calories whereas the TreadClimber is worth 200. Note that both of those numbers are more than the 190 I burned for a bike ride that was 3 times longer. Coincidentally according to one study the calories burned on a Max Trainer (and possibly a TreadClimber) are at the same rate or higher than the calories you would burn in the most intense P90X workouts (Plyometrics was number 1 at an average of 14.7 calories per minute). The only downside to the Bowflex options is that they can be pricey but otherwise a no brainer to me plus I don’t think most gyms tend to have something like that as they usually stick with conventional ellipticals and treadmills which do not result in the same calorie burn particularly not at the low speed and impact of the Bowflex.

Lastly something to note for anyone taking Xyrem (as well as some others such as Alka Seltzer) in regard to diet and that is to adjust you daily sodium intake in accordance with the sodium intake from your medicine for example in my case and at my dosage I am getting around 1000mg of sodium from my medicine (Alka Seltzer came in around the same at 1134mg per 2 tablet dose) everyday out of the AHA’s recommended limit of 2300mg per day with a goal of moving closer to 1500mg per day. Due to this I adjusted my sodium goal down on my fitness app to 1300mg and I will say it is not easy staying under that number. For example I am a big sandwich guy be it a reuben or an italian sub and so focusing on the latter a particular italian sub I have had in the past is the Italian Night Club at Jimmy Johns and if you look at the nutrition facts for that particular sub you will find that this one sub alone has a whopping 2590mg of sodium. More than an entire days worth in one sub granted I tend to try to split subs up into 2 meals but regardless its wayyyyy above my revised 1300mg limit. So yeah keep an eye on your sodium people and drink plenty of water. (coincidentally those two things will also help you lose water weight)

Reply To: Cataplexy / Once a trigger always a trigger?

Thank you for sharing your experience. I am glad to hear that you have found that Xyrem is helpful in treating your symptoms. I think the value in these forums continues to be the ability to hear from others concerning their experiences with symptoms, treatments, and lifestyle choices. It seems that all of this can vary so greatly for each individual.
Through a cooperative effort we can continue to contribute to a greater understanding of this disease as each of us works towards finding a “balance” of what might help in some way. Please keep us posted on how things are going for you.

Reply To: Going Off of Xyrem

I have been without Xyrem for several days on a few occasions due to calling in the next shipment late and nothing unusual seemed to happen beyond the return of all the usual crappy narcoleptic stuff.

Reply To: Cataplexy / Once a trigger always a trigger?

My cataplexy is very well managed by Xyrem but before laughter and anger were triggers for me as well as sometimes having no trigger. Now it takes intense prolonged laughter to be an issue and anger can sometimes cause it but it is more limited to weak cataplexy that I can feel is there and may affect my face and eyes but not really a head dropping/fall risk concern.