Sleep Lab Results

[Graci726]

Hey! I'm just another person who also has IH... Just got diagnosed about a month or two ago. The reason my doctor said I couldn't be diagnosed with Narcolepsy was pretty similar. I only had one thing that kept me from the diagnosis... I didn't go into REM when I slept. That is something that narcoleptics do. My doctor has me taking Trazadone (sp?) and Melatonin. If you ever need someone to talk to feel free to message me. :) Good luck!

[jlp6869]

That's what they told me. I was 2 steps from being a Narc. But, now I'e got IH with Secondary Sleep Apnea & Restless Leg. IH is so misunderstood. People are more concerned with those that can't sleep verses those that can sleep like a pro! Aka people with IH! We are the Pro Sleepers! :)

[jordanschmidtlocatio]

You r way too into yoursekfbitch and what's with the saliva in your voice?

[bloykunker]

i got diagnosed with severe obstructive sleep apnea after my sleep study.

i've been using a C-PAP now for about 5 month and definately notice a difference.

I have to say though that i really dont like having something strapped to my head/face

while trying to sleep and i don't think i'll ever really get used to it to the point wear i don't mind it. having said that,the alternative [feeling run-down and scatter-brained] is over-ridden by

the discomfort of the C-PAP

[wazzumichael]

wanna sleep with me?

[makinawdandy6699]

Hi there. Sorry to hear about your problems sleeping. Just wondering if you have been checked for sleep apnea. Probably, you have. I mention it to you just in case. If you do get tested, please don't settle for finger oxymetry tests of blood alcohol. You need the full Polysomnogram (PSG) test.

Secondly, I want to recommend that you read a book titled, "The Promise of Sleep." The author's name is William C. Dement. It is a classic. Written by a world expert but in plain English.

[TheNiikki1]

Is a sleep study really as bad as it seems? I have to go to a sleep study in Stanford tomorrow, so I'm kinda scared. How are you supposed to sleep when your'e wired up like a puppet? I have no idea of what to expect! My doctor says there is a 98% chance that i have Sleep Apnea because of my monster-sized tonsils. How is it like to be in a Sleep Lab?

[nikilee76]

I'm going tonight for a sleep study. Glad I found your couple of videos, I really hope you're doing better!!!

[seanvwolf]

A couple things different from narcolepsy and IH... people with narcolepsy can take a nap and feel refreshed. people with IH can take all the naps in the world and never feel like they took a nap.

[TATup2010]

i have the same thing and im only 15 but i just had a m r i to see if it is a chemical imbalance of anything else i take meds to eep me awake

[Shaderraberry]

@TATup2010 I wish you all the luck in the world; hang in there.

[sjws89]

I have I.H. too. It is even more rare than narcolepsy. I have never met anyone else with the diagnosis. I have had it since 1984...no doc ever listened to me about my sleepiness. I couldn't there were others out there with the same thing and that it actually had a name. Good luck to you!

[Shaderraberry]

Glad to find someone to share it with, sad to hear that you suffer from it, too. Good luck to you as well. :)

[catman72]

hi there just started watching your videos (and love them!) so i don't know if you've talked about it or been asked about it- do you do periodical tests for metals levels in your blood? i ask because i'm a glass blower and am aware of the danger of silver fumes and other metals. so i check once a year, and i use very little silver, gold and copper, and some coloured glass (cobalt -ouch!) how about you? it seems you are working with all possible hazardous metals...

[Shaderraberry]

Yes, I have been tested for metal toxicity. Sadly, in our industry, we will always be around hazardous materials... but that's what makes it fun! Thanks for you suggestion; I should probably take it upon myself to get tested more often. Thank you.

[donnat1978]

Thanks for sharing- same condition here.... on provigil. You?

[Shaderraberry]

Yes, it's helped a ton. I can only hope the same for you. Best of luck.

[eveorina]

Is the Idiopathic Hypersomnia a result of your vampirism or is that just from other medical issues you have?

Sorry if that sounds nosy; just curious since I remember being really tired during the day is a common symptom of vampirism.

Glad for you that you found something that's helping you either way. :)

[Shaderraberry]

Thanks for an actual, insightful, and intelligent question! Not nosy at all.

The very nature of Idiopathic Hypersomnia is the fact that it's "idiopathic," meaning that they cannot find a cause for excessive sleepiness.

I could posit that it might have something to do with identifying myself as a human being who needs another sustainable energy supply other than my own; but to do so outright would be unscientific and ignorant.

The most likely answer is that it's its own medical condition.

[eveorina]

Happy to dish those out lol.

So it's its own condition without a cause; it isn't simply a symptom of your energy needs. Thanks for clarifying because I would've just thought that one was the cause of the other.

Thanks for the reply :)

[novatransporter]

Provigil is your friend! Expensive as hell but worth it. Ritalin and/or Adderall/Dexedrine is cheaper and works better but some doctors aren't willing to prescribe them despite being perfectly acceptable for Narcolepsy (and IH).

[Shaderraberry]

I just started taking it, and man, can I tell the difference. It has been a life-saver.

[klockemy]

Diet Narcolepsy! lol that's too funny. I just got done with my second sleep study for OSA last night. Gotta love those places, huh? At least you had a sleep number bed. They had tempurpedic beds at my sleep center and those things are so freaking hard. Best of luck to you.

[Shaderraberry]

Thank you, to you as well.

[JennyBurke33]

Im doing a study for Narcolepsy tonight and tommarow.

[Shaderraberry]

I wish you the best of luck!

[JennyBurke33]

thank you

[thinkrockaglockpoppa]

my doctor diagnosed me with ideopathic hypersonia too.i have been feeling this way for a few years and its a little worse. so i have to go to a sleep center soon. i was also positive for epstein bar but my doctor doesnt believe in it.can you give me any advice?

[Shaderraberry]

I am not a licensed medical practitioner nor a doctor so I am not qualified to give out medical advice. I CAN tell you my own experiences.

I recommend getting a second opinion as far as the Epstein Barr goes. Vitamin deficiency can account for a lot of sleepiness. I take B12 to help with my energy levels. Drink plenty of water; at least 60 ozs a day.

Could be a number of different things; visiting your GP to eliminate possibilities and pinning the actual cause down is prudent.

Best of luck.

[morganglow100]

so were they able to do anything to actually help you?

[Shaderraberry]

Not really. Since it's "Idiopathic Hypersomnia" ("idiopathic" in this context meaning the doctors are idiots and don't know what's causing it... ha) my doctor prescribed Provigil to try and help counter-act excessive daytime sleepiness. I haven't tried it yet, not sure if I want to. But that's about the only thing they could do for it. Hope that helps.

[SylvereApLeanan]

I got a chuckle from "narcolepsy lite" -- very clever. I hope you can find a doc who can find a good treatment for you. Best wishes.

[Shaderraberry]

Thank you Sylverë; I try and see the humorous side to things when they don't seem so happy. Thanks so much for your warm thoughts.

[masticina]

Ah well happy you actually could get a diagnose. Life after the rubberstamp at least means you have a reason. Keep fighting!

[Shaderraberry]

Thanks so much. :) It's just one rubber stamp though, they haven't gotten to the big one yet. Take care.

[masticina]

Chuckle isn't that life, then again maybe in time. Maybe in time that rubber stamp officially exists!