8 replies to this topic

[saoirse]

Hi all, if anyone could give me their thoughts or advice it would be much appreciated.

I've been struggling with EDS for two and a half years now and it has been getting slowly worse, like IH and narcolepsy both tend to do I hear. I had a sleep study a while back and was diagnosed with hypersomnia, but I was too nervous to fall asleep on my nap tests so I'm not sure how they could have gotten an accurate diagnosis.

The truth is that I have both symptoms of IH and narcolepsy. Like narcolepsy, I have fragmented sleep and have dreamed while falling asleep a few times. Like IH, naps are not very refreshing, they are long, I usually have extended night time sleep, and no cataplexy, HH, or SP. I do not have sleep drunkenness - have only had that once or twice, but getting up is a pain.i do not have sleep attacks, just incredible drowsiness and sometimes a drugged feeling.

What do you think? Sould I ask for another sleep study? I really want an accurate diagnosis for some reason. Also, stimulants do not really help, which some doctors think is indicative of IH, but I don't really know.

Any thoughts would be appreciated.

[jsg1206]

I will give you my experience and diagnosis: First of three sleep studies (3 different hospitals because I did not want to accept I had a sleep disorder, but the results were the same for all, these are top sleep doctors in Houston Medical Center). 2005 first test / diagnosis, fragmented nocturnal sleep, MSLT slept on all naps, 2/4 Sleep Onset REM, Mean Sleep Latency "pathologically severe" at 2.25 minutes. I was put on Provigil before I even knew what the illness was.... helped some, then moved to Xyrem max dose (horrible horrible stuff for me, I felt totally depressed zombie the next day). I never thought I had any form of cataplexy, but now I think my weak / wobbly legs under severe stress might be that.... 2 subsequent sleep tests showed similar results, I tested negative for DR15, DR16, and DQ0602 blood tests - "nearly 100% of Narcolepsy patients test positive for this" - so, combined with my ability to take long daily naps (hours at a time like this past Saturday and be out cold, wake up confused and not refreshed most times feel worse) symptoms more similar to Idiopathic Hypersomnia..... so, after all that, doesn't really matter what the diagnosis for EDS is (horrible either way) - as for cataplexy, that is a different story, need to inquire about Xyrem on that.... If I were you, I would do my best to fully commit to an Overnight Sleep Study and MSLT (I had no problem falling alseep), blood tests for markers, that is the only way you might get some clarity and help. Good luck.........

[DeathRabbit]

IH, from my understanding, is just a pantheon of symptoms with no clear discernible cause. If you end up with an IH diagnosis, I urge you to keep pressing. After all, true idiopathy is impossible. There's always an underlying cause.

[corey91386]

IH, from my understanding, is just a pantheon of symptoms with no clear discernible cause. If you end up with an IH diagnosis, I urge you to keep pressing. After all, true idiopathy is impossible. There's always an underlying cause.

My doctor explains IH and Narcolepsy to be very similar in symtomology. Same treatments for each. IH has a more optimistic outlook. With the chance of it possibly going away sometime in your life. Where Narcolepsy never will. I also had 3 sleep studies at totally different institutions. First 2 I was diagnosed with Narcolepsy, 3rd one with IH. Sleep disorders are crazy and present themselves differently with each person I feel like. My 3rd doctor who is very well know in the sleep medicine community, went back and scored my msly himself. The sleep tech had marked down REM in each nap, he went back and marked them as not REM and too close to close to say they were REM, therefore giving me the IH over the Narcolepsy. He tells me time will unfortunately tell.

[naplover]

It seems like you have the right info about IH vs. narcolepsy. If you can, I'd suggest visiting--or contacting, if that's not possible--Dr. Rye at Emory. He's pretty much the only one doing research specifically on IH. 

 

Article about Dr. Rye's work: http://online.wsj.co...th_journal.html

Unfortunately, the one effective treatment is not available. 

[dormir]

How irritating that the third doctor reread your MSLT results marking it notreallyREMbutpossiblymaybeREM.  That is terrible.  Are you taking any medication right now and if so, how do you feel?

[corey91386]

How irritating that the third doctor reread your MSLT results marking it notreallyREMbutpossiblymaybeREM.  That is terrible.  Are you taking any medication right now and if so, how do you feel?

 

Everyday seems to be different. I am on provigil and have really gotten little from it. I feel spaced out as is and the provigil seems to enhance the feeling. I feel like im half asleep all day. But can't fall asleep very easily unless circumstances permits. Sleep deprivation is its own beast by nature. I'm looking at xyrem as my next option. I am pretty sure I have Narcolepsy.

[J718]

Corey, have you asked a doctor about Xyrem yet? I'm curious because I'm in a similar situation...it's not clear whether I have narcolepsy or ID because I take antidepressants (which alter REM sleep.) I would really like to try Xyrem too but I'm worried that I won't be able to because I don't have a definitive diagnosis.

 

Have you tried any stronger stimulants? I tried Provigil and Nuvigil and they did nothing for me. I take Adderall now and it's been at least somewhat helpful.

[Rainbow]

I had my MSLT and although I fell asleep all 5 times (12 minutes average) I did not have REM.  I remember dreaming but I guess not.  So I have "MILD" IH diagnosis and he is switching me from Provigil to Dexedrine because we don't have the long acting modafinil here in canda (so don't even ask, the doc said)  

 

I am not happy about how the idea here is to fill me full of drugs to make me someone I am not to get me back to work.  He took away my driving privileges?  I was not EDS all the time so I was careful not to drive tired... but another 6 weeks I am not allowed to drive while I take Dexedrine   I hate it.  

 

I am being forced to take drugs against my will so that I can drive and not be called "non-compliant" or else disability insurance won't pay.