4 replies to this topic

[Mina]

I finally went to my primary care physician about my sleep after my mom found relief with her CPAP machine.  All I knew about sleep disorders was what my mom had told me about sleep apnea.  I was sleepy and overweight so I asked my Doctor and she sent me for a sleep study. 

 

Ever since high school (I am 26 now), I am always very tired and I find it very easy to fall asleep… too easy and sometimes I fall asleep at school or work or when company is over.  I’ve put on a lot of weight over the last 4 years. I don’t have the energy or the time to work out and after failing the dietitians food log because I couldn’t avoid the bad cravings for the extra energy boosts, it all just seemed impossible.  Part of the health focus was to give up caffeine and after switching my 12 pack of Diet Pepsi a day to caffeine free, I got even sleepier. It has made falling asleep at night much easier, but now I am going to bed earlier and earlier.  I used to fall asleep around midnight and struggle to wake up at 8am, but now without the caffeine I fall asleep between 8pm and 9pm and still struggle to wake up at 8am.  Getting to work at 9am is just not ideal for me because then I don’t get home until 5:00 at the earliest.  If I allow myself to nap I can sleep 3 hours no problem and I wake up for ½ hour before sleeping for the night.  If I try to push through the evening without a nap by doing housework or playing with my dogs, I move very slowly and I tend to get depressed about how little I accomplished.  On the weekends or holidays it is very easy for me to sleep 16+ hours straight or via naps that are 3-5 hours long each.My sleeping has always been an issue in my relationships.  My boyfriends didn’t like that we couldn’t go out and do as much because I was so sleepy.  I ended up dating mostly gamers because it worked out better, while I slept extra they just played video games.  But when you are with someone you want to spend time with them so even my gamer relationships felt the strain.  My current boyfriend/future husband and I live together and he is amazing.  He takes care of our two dogs, he handles things around the house, he makes dinner for us and he is my personal alarm clock because when I use regular alarm clocks I don’t remember myself turning off the alarm (I can hit snooze every 10 minutes for an hour and a half without remembering it).  He starts at around 7 and I don’t actually get up until sometime after 8am.  It is frustrating for him though because I say I am awake, when I am not or I fall back asleep right away.  I feel so weird, I generally do not remember him trying and my brain doesn’t recognize the importance of waking up… He has been unemployed for the past 6 months but he finally got a job offer to start next week.  While I am really excited for him to get back to work and super proud that he landed this gig… I am also beyond anxious about how this may affect how I wake up in the morning and how we get housework stuff done.

 

I basically just considered myself lazy until I got the Sleep Study report, which simply stated, I have excessive daytime sleepiness.  Now I am just really confused.

 

During the study I felt like I got a good night’s rest overnight and I fell asleep during each nap and probably in between those as they had to keep coming in to make sure I wasn’t sleeping.  They asked me if I dreamed and I wasn’t sure… I remember thinking about things but I don’t know if they were full blown dreams.  The letter with the report said I could set up an appointment with a sleep specialist, which I have scheduled for later this week.

 

I looked up EDS and found Hypersomnia and Narcolepsy and I am now taking a serious look at my sleep history and how it has affected my life.  I don’t want to go to my appointment pre-convinced that I have something, but I want to be ready for the appointment.  What would you suggest I have prepared to discuss with this specialist?  I am really interested in treatment options, but how do you bring that up?  Is it possible that while my MLST reported excessive daytime sleepiness that I may not even have a sleep disorder?  From what I have read on this forum, I think your community is very supportive and I would really appreciate your opinions on my situation.  Thank you so much!

[munky]

Research! Start by googling 'excessive daytime sleepiness' (EDS) and reading through articles you find on websites for sleep labs, sleep doctors, the national sleep foundation, etc. That will give you a good idea of what various things might cause EDS--and there are several of them, some of them sleep disorders and some of them otherwise, such as thyroid problems.

 

Do some reading about hypnagogic hallucinations (HH), sleep paralysis (SP) and cataplexy. These boards are a great place to start. Then, google those topics as well, with the same constraints about what articles to lend credence to. I should note, also, that I haven't found any major errors in the wikipedia articles on any of these topics.

 

Google also has an option to do a "scholar" search. This will search only scholarly articles/textbooks. Some of these can be very difficult to follow or understand, because they're written by medical professionals for medical professionals, but another search or several on terms or concepts you're having trouble with will usually lead to better understanding. That's been my experience, anyway.

 

Make a sleep diary. There's a post here, somewhere, with a clear description of a very easy, comprehensive sleep diary that results in a graphic representation of your sleep habits. Wish I could remember where the post is, but search the forums for 'sleep diary', and I'm sure you'll find it. Make taht sleep diary and take it with you, though the short lead-time doesn't leave you much time to cover. Still, the doctor will appreciate it.

 

Make notes! As you learn about the various symptoms I mentioned above, make notes about whether you have ever experienced them, or think you have. Dates, even generalized such as "when I was in my teens", will help. You don't have to make note of every occurence, but the first time you remember it happening and approximately how often it has happened since would be good.

 

Write down EVERY medication you take, whether prescribed or OTC. Include all vitamins and supplements, and the dosages and times you take them. Remember: "as needed" counts as a time, so if you take, say, 400mg of ibuprofen when you have a headache, make sure you include that! (I generally just drop all my medication/vitamin/supplement bottles into a bag and carry them in with me. That way, both my doctor and I can be absolutely sure that I don't miss anything. I tend to be forgetful. Hell, when my insurance changed and I switched to the new PCP and filled out her paperwork, I forgot to put several things on the medical history. I kept having to amend it every time I came in for the first year.)

 

Print out your post, above.

 

Take ALL of this with you when you go to the doctor, including the results of the sleep study and the letter that came with it. The doctor may request another one, especially if s/he prefers to use a different lab. S/he may also request bloodwork or other tests. All of these can be helpful in finding out what the cause of the EDS is.

 

ASK QUESTIONS! Whatever the doctor suggests, make sure you understand exactly what s/he is saying. If s/he requests more tests, ask why. Don't be rude, just let him/her know you want to understand what's happening and ask: 1) Why these specific tests?; 2) what do you hope to learn from these tests?; 3) If these tests don't lead to an answer, what will the next step be?; and, very important: 4) What can I do to help figure this out? and 5) Do you have any suggestions for what I can do in the meantime to help with the symptoms?

 

This is how I approach pretty much any doctor's appointment that isn't a well visit. I have a good doctor, and I trust her, but I will always question what she tells me until I understand 'why A and not B.' So far, I've been very happy with the neurologist, too, though I've only seen him twice, but I do the same with him. A good doctor won't be offended by your desire to understand what s/he is doing and why. A good doctor will appreciate you wanting to take an active role in your own healthcare.

 

Anyone else have anything to add?

[Arrow2]

Having just spoken to a sleep specialist last week, I agree with most all of what Munky said. I look at my job prior to Dr. appointments as being one of collecting and organzing as much relevant information as I can. Then I let the Doc absorb it and respond. I also always have a list of questions. Bringing notes (or in my case a kindle with Evenote) to a Dr. appointment is absolutely essential. You have to be prepared to get the most from the appointment.

 

I'm on the fence regarding research beforehand. I limited my research to a google search on "preparing for a sleep dr appointment" or "preparing for a narcolepsy-related dr appointment". For me personally, I find researching actual conditions too much on the web to be isolating, overwhelming. There is so much out there. If I do research, I limit it to sites like Mayo or wiki -- basic factual stuff. After I speak to the Doc, I feel a little more grounded and more able to process info correctly. One of the questions I always ask is where to go online to get both factual info and also support from other people in the same situation as me. After I gain a basic understanding from both the Doc and the factual sites, then I dive into more sites and expand searches, including the scholoary articles as there is a ton of good stuff out there and it is very useful once I have my own personal context to filter it.

[munky]

Everyone's process differs somehow. I've always loved to do research (though not write a report about it afterward!), so doing so before an appointment actually helps to keep me from worrying too much. I guess, in my case, it helps me to know that there are answers even if I don't know what they are yet, and to have some idea of what the doctor might do to figure the right answer out.

 

It's a balancing act, though. Some people will do the research, diagnose themselves (often wrongly), and then refuse to believe anything the doctor tells them otherwise. Heck, I have a brother-in-law who's a hypochondriac. The moment he hears about some disease or disorder, he's convinced he has it! Luckily, my sister is much more level-headed and can talk him down or they'd be spending all their time in doctors' offices! She won't even let him look at WebMD ... she blocked the website, and he isn't computer savvy enough to unblock it or find an alternative.

 

Anyway, my point is, those are the steps I take, and they should be tailored to fit what will work best for each individual. I should've said that in the earlier post, but ... well, I'm a dork.

[lilmomm]

Your situation sounds exactly like mine and I did marry my gamer boyfriend, lol.  My PSG showed nothing abnormal but on my MSLT I had a sleep latency of 3.3 and I went in to one SOREM.  My sleep specialist said that I either had severe idiopathic hypersomnia (tired with no known cause) or narcolepsy and for some reason I didn't go into SOREM much that day.  He said it didn't really matter either way since I don't have cataplexy because the treatment is the same.  He put me on Nuvigil and I feel so much better and my thoughts are much clearer and more focused.  I do have to say though if I don't get at least 7-8 hrs of sleep at night the Nuvigil doesn't work nearly as well.  Good  advise from the above posters as well.