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May I Ask For Some First Hand Experience?


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#1 mojo jojo

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Posted 06 February 2013 - 08:54 PM

Well a week or so ago I has my sleep study done, but I need to wait 2 more weeks until my appointment so I can review the results with my doctor (yyyyyyaaaaay waiting).

 

Background:

I have been having EDS since about 19 or so and have just turned 25. This new doctor I am going to was the first to ever take my claims seriously and not brush it off as "hormones" or "allergies". I think it helps that I am now in a medical degree program and not just some punk kid. He asked me about my habits and I told him that I am always tired (except sometimes I get a breif energetic period from about 8pm-11pm). It doesn't matter how much or how little I sleep I just am tired. If I don't nap (I can force myself not to but it is unpleasent) I am a dead eyed zombie staring unblinkingly at the wall forgetting what I am doing or saying. He check out my bloodwork and did a bunch of baseline tests, but it showed up WRI. So he had me do a PSG a few months ago to check if I had sleep apnea, but I did not snore or move my legs the entire night. I did have multiple spontaneous arousals, however, so they recommended a MSLT (especially as the sleep study is done in a basement and there would be no sound or light).

 

I went in for my MSLT and slept a little deeper this time, but still remember waking up a few times (mostly because they use waterproof mattresses that crinkle when you move). Based on lights out and wake up I got about 7 and a half hours of sleep. During the daytime portion I apparently slept on all 5 naps (although one I only slept briefly... I think it was the first as I was nervous). I repeatedly woke myself up during the naps due to me overanalyzing if I was actually sleeping, but I do remember dreaming during them. At least I think it was dreaming, sometimes it is hard for me to figure out if I am actually asleep or almost asleep and letting my imagination run away with me.

 

 

 

There were a few things I had questions about, but it did not occur to ask me during the test:

 

-They said that sometimes they only needed 4 naps, but in my case they went ahead with all 5. Is there a specific reason for that?

 

-When I woke up in the morning the tech said it looks like I was "seriously dreaming" and that I might be having REM rebound. I don't have sleep apnea, and for the entire month before the test I was on vacation (I highly doubt  was sleep deprived). I am also not on any medications at all (well except for my morning energy drink).



#2 Gemini730

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Posted 06 February 2013 - 09:45 PM

I may be able to help with the first question.  As it was explained to me during my nap study, whether you do 4 or 5 naps depends on if you enter REM sleep.  If during the first 4 naps you do NOT hit REM at all, there is no need for a 5th nap (the early onset REM part of the N. is not met).  If during the first 4 naps, you hit REM 2 or more times, there is no need for the 5th nap (that part of the dx is confirmed without the need for a 5th nap).  If you hit REM in ONE of the first 4 naps, they conduct a 5th nap to see if you will hit REM again.  That's how it was explained to me....others may have a different answer/understanding.



#3 mojo jojo

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Posted 06 February 2013 - 11:28 PM

  If you hit REM in ONE of the first 4 naps, they conduct a 5th nap to see if you will hit REM again.  That's how it was explained to me....others may have a different answer/understanding.

Hmmm I remember dreaming in the last nap and thought I was pretty deep in sleep, but I also woke up abruptly. I remmeber dreaming about doing normal mundane things then being like wait when did I leave the sleep center... HOLY HECK I AM STILL THERE. Thus scaring myself into wakefullness (I had a test I needed to study for coming up and was getting antsy). Who knows if they got any usable data off of that, I guess I will find out in two weeks.



#4 DeathRabbit

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Posted 07 February 2013 - 11:03 AM

That last experience sounds like hypnopompia, so I would wager REM did happen.



#5 Arrow2

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Posted 07 February 2013 - 11:12 AM

I guess I don't have much to add other than I know that dreams can occur in other stages of sleep so dreaming doesn't equal REM.

 

As far as the two week wait before the appointment goes, I also was faced with such a wait. I was also told I would need to wait 2 weeks for the results to be mailed to me. I was in a spot where I couldn't accept these timeframes. I called the sleep center a few days after the sleep study and after some polite questions I was able to pick up the results in person -- 4 days after the test (they were about to spend 3 days in the hospital bureaucracy before even being mailed). 

 

I was also successful in reducing my wait for the appointment. Most Dr's have cancellation lists, but I don't think I have ever had an appointment moved up because of being on them. What does work very well is to call the scheduler (or scheduling department) and ask if there are cancellations. Schedulers hate cancellations because that means they have to try to fill it, which involves calling people on the cancellation list, leaving messages, working with schedules, etc. If the cancellation is for that day, they often won't even try to fill the spot due to short timeframe. Either way, they love being able to fill a spot quickly and easily with somebody already on the phone (and hopefully that someone is you!).

 

Anyway, I was able to reduce wait for my appointment by 1 week by calling.

 

So, long story short if you want results sooner, call and ask if you can pick up in person. If you want appointment sooner and have a flexible daily schedule, call mid-morning and ask about cancellations.

 

Good luck!



#6 mojo jojo

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Posted 21 February 2013 - 11:07 PM

So I got my results back and since I only hit REM once during the MSLT I have been diagnosed as having IH. I have been started on Nuvigil (150mg) once daily, but I will be changing that to Provigil next month as I would not be able to afford that for a long term. This is my second day and I do feel a lot more alert then normal, but skill kinda sleepy. From what I understand the full effects are additive so you will see the most efficacy after a month of use. I was wondering if any other Nuvigil users could tell me about the side effects they experience.

 

It's the second day and I have had dry mouth constantly, which is kinda to be expected and the higher water intake is likely good for me. I have had a mild headache, but nothing to write home to mom about. The biggest thing for me is that my muscles are a bit sore. I was a bit more active yesterday as I actually had energy so I am not sure if that is the cause, but it is a bit distracting. Do the side effects lessen after an extended period on the drug?



#7 DeathRabbit

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Posted 22 February 2013 - 09:59 AM

The sore muscles may also be IH symptoms. Post exertional malaise and protracted recovery time after exercise are common in people with poor sleep architecture because your body does most of its mending in SWS. You are missing out the natural healing cycle everyone else gets nightly.



#8 mojo jojo

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Posted 22 February 2013 - 10:50 AM

The sore muscles may also be IH symptoms. Post exertional malaise and protracted recovery time after exercise are common in people with poor sleep architecture because your body does most of its mending in SWS. You are missing out the natural healing cycle everyone else gets nightly.

Wow you have a lot of useful knowlage! I will keep that in mind when assessing my current medication. Right now I think I need to raise the dose a bit, but I want to wait till I have been on it a few weeks to get a real assessment then talk to my doctor about it. This is especially true if the muscle aches are being caused by the meds and not just the exercise.



#9 munky

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Posted 22 February 2013 - 11:47 PM

From what I understand the full effects are additive so you will see the most efficacy after a month of use. I was wondering if any other Nuvigil users could tell me about the side effects they experience.

 

When my doctor started me on Nuvigil, he started me with the 150mg dose, and told me it was not additive, that I should know immediately whether or not that dose was going to be effective, and if it wasn't immediately effective, it wouldn't get better. (It wasn't, and I moved up to 250mg once/day.) As for side effects, a headache is normal. As my regular doctor explained it to me, "Nuvigil crosses the blood/brain barrier. Even if your brain likes the effects it does not like things crossing that barrier, thus the headaches. Once it gets used to the medication crossing the barrier, the headaches should go away. Give it a couple weeks, maybe as much as a month, and they should be gone."

 

Never had any muscle soreness. I think, as far as that goes, DeathRabbit is right: your muscles are sore because it takes longer to recover after exercise.

 

Do, however, keep track of the dry mouth. I've never had that problem with this medication, but someone else posted on the board about getting a sore throat, then noticing that his tongue was discolored, then it started flaking ... turned out to be a serious and dangerous allergic reaction. I just found the post. Here's the quote:
 

Posted by Tre on 10 February 2013 - 01:20 PM

(Provigil User Poll - Page 4 - The Provigil Experience - Medication Station)


I voted ....it worked..kinda

 

I think there should be a another option here.  I'm one of the rare few who, while it worked to keep me more awake, got the symptoms from the medication that suggested I was headed to a Steven-Johnson like reaction.

 

Sore throat and mouth, discoloration on tongue and in mouth, peeling tongue, rashes in armpits. 

 

Yet it was helping and I was angry I had to stop.  Please be aware if you start this medication if you get any kind of rashes or sores lead to an extremely life threatning condition.

 

And here's another post from the same user, slightly different (more detailed) description:

Posted by Tre on 10 February 2013 - 11:58 AM

(Newly Diagnosed Narcoleptic... I Have No Idea What I'm Doing!! - Page 1 - Diagnosis)

 

I cannot take stimulants due to a heart condition but I took Nuvigil and Progivil.  I liked the provigil better but please watch out for sores or rashes.  I got a sore throat and my tongue was discolored.  Soon after it started peeling and flaking.  I also got rashes in my armpits :(  Doctors suspected Steven-Johnson syndrome but I was just pissed I can't either med.

 

http://en.wikipedia....ohnson_syndrome

 

This type of reaction can happen even on atibiotics...It's very rare but then I guess that's my luck. 



#10 mojo jojo

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Posted 23 February 2013 - 03:28 PM

Don't worry it is not a sore throat and I haven't seen any rashes, I am just super thirsty due to the medication. If it is not additive I will talk to my doctor about upping my dosage on Monday. From what I read 150mg is pretty minimal and I had to take two naps yesterday to keep my brain moving/ was still tired during class.

 

I am just happy this doctor took me seriously. For years whenever I bring this up doctors have told me "oh it's hormones", "you just need more sleep than everyone else", or most insultingly "It's likely just in your head". All of these based on the fact that I had normal blood work. My new doctor is amazing. He eliminated all the more obvious choices and when that didn't work sent me in for a sleep study to check if I had sleep apnea. That's where they noticed my sleep architecture was not what it should be. Sorry for the rambling, I am just so happy this hasn't all been in my head for years. I was starting to worry that everyone felt this way all the time and I was just a lazy, whiney wimp.



#11 munky

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Posted 23 February 2013 - 09:11 PM

Glad to hear there's no sign of any rashes, but keep an eye out for it, still. With some medications, the reactions can actually take a long time to surface. I've even heard of reactions taking several months to show up. Dunno if Nuvigil is one of those, but I'm still watching for reactions myself, and I've been taking it since Thanksgiving.

 

My doctor started me on the 150mg dosage, too. Actually, he gave me two sample packs, each with a week's worth of pills. One of them was the 150mg, the other the 250mg. Told me to try the 150mg first and see if it worked--and that it would be immediately obvious if it did. If it didn't, try the 250mg and see if that worked, then call his office for either for a prescription or to try something else. The 150mg didn't seem to be doing anything at all, as far as I could tell. I started it on a short week at work, so I took it for the 3 days that I worked that week ... didn't help a bit.

 

Started the 250mg the next week, and he was right--it was immediately obvious it was working. I felt awake for the first time in my life. No brain fog, no complete exhaustion ... Heck, I even found myself smiling for no reason--something which I've very rarely done, 'cause I'm just too tired to make the effort. After 3 days of that (for legitimate comparison), I called his office and they called a prescription for the 250mg dose in to my pharmacy. The first week on the 250mg was pure heaven, but the efficacy has already worn off somewhat. No longer have that wide-awake, no brain fog feeling--and boy do I miss it!--but I am, at least, doing better than I was before the meds. And I really don't want to start on amphetamines, with all their associated risks.

 

So glad you found a doctor to listen to you! I've always been very careful in choosing doctors. Comes, I think, from having had an amazing family physician when I was growing up--not to mention one of the country's leading pediatric neurologists. (She literally wrote the book on interpreting EEGs. Last I heard, they still use that textbook.) When I was grown up and on my own, I expected every doctor I saw to be exactly like those wonderful doctors I had as a child, and if they didn't live up to my expectations, I switched doctors. I got to the point where I'd go in for my initial consult and interview the doctor, and I adore my current GP. She listens to her patients ... and she obviously cares. I never have to remind her of anything, and she always takes the time to answer all of my questions. If she doesn't know the answer already, she will take the time to look it up, and have her nurse call me with what she finds. I've only seen the neurologist/sleep specialist a couple of times, so far, but he seems to be the same type.



#12 h.wynn

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Posted 27 February 2013 - 10:08 PM

Provigil makes my eyes cross. With Nuvigil I clinch my jaw. Eather way I have a case of the dumbs on any day time meds.