Jump to content


Photo

Xyrem & Breathing Prob- Is This Really Ok As Dr Says ? (Husb Says Sounds Obstructed Sound In Pharynx)

Xyrem breathing problems Respiratory UARS

  • Please log in to reply
5 replies to this topic

#1 Misseddx

Misseddx

    Member

  • Members
  • 16 posts

Posted 18 December 2013 - 11:57 PM

Hi all, I was dx w N without cateplexy in March 2013 at age 44. I am seeking feedback from u all who are more informed on what is considered 'normal' or safe side effects in taking xyrem. Let me preface this by saying my sleep doc recommends I take xyrem and continue it. Two other docs I see also agree that I need to get better sleep to solve other health prob, but prim care doesn't know much @ xyrem. And I also recognize that no one here is telling me what to do medically. I just don't know if this is "normal" (aka won't cause me to stop breathing all together...)

Last weekend I took xyrem for my 1st night ever at the prescribed dose of 3grm then 3grm. My main side effect was being very dizzy in middle of night; however, my husband is very concerned @ uncharacteristic breathing problems he has never seen before in our 10 yrs. He said that for 2 hrs (started @ 2:30am- ~ 30 min after my 2nd dose), he was very concerned about: 1) I had uncharacteristic heavy & irregular mouth breathing (can never breath thru my nose, even after deviated septum surgery in 1997ish); 2) noises of grunts -groans that were initially familiar (he says I make this when he thought I was prev having "bad dreams"), but this was uncharacteristically different in that I made the noise (groan) when the "air was in my pharynx" and that the noise was caused/coming from my pharynx; he said it wasn't a wheeze, but a noise from my throat that sounded obstructed; and 3) uncharacteristic breathing of 1st very rapid, then @ 10 sec of no breathing (he had hand on my diaphragm), then I would breath again. He said all 3 of these lasted 2 hrs, then I slept deeply without these symt. He tried to wake me up by saying my name & turning me over , but I was "knocked out." He didn't notice these sympt after 1st dose; he was sleeping deeply b4 my 1st dose kicked in. He was up @ 2 am w our son & heard this when trying 2 go back to sleep (then couldn't sleep bec concerned).

Since doc office not available on weekend, I called jazz phar who advised I not taken further until I talked w doc. Doc called said that both of my sleep studies do not show that I am at risk 4 obstructive sleep apnea, & I should try again at reduced dose of 2grm & 2 grm, also said "central apneas occur w REM sleep & not necessarily dangerous & can be an adjustment that is seen in breathing." Also said that he thinks xyrem will help in my situation.

At this same time, I have had separate unrelated feedback from an "out of state narc specialist" that questions whether my narc dx is accurate & that it sounds like I have UARS (upper airway respir syndrome) based on my symptoms, & states that my sleep study results really aren't valid, as the protocol should have discontinued the antidepressants to accurately dx narc. (Antidepressants do suppress REM sleep, BUT Can " cause false rebound in REM sleep." (Naps)). I looked up UARS-- holy moly, I only have 2/10 sympt of narc, but 9/10 symp of UARS. This is me - even the obscure symp of cold feet- hands I've been complaining @ since 1995. (Do not have raynauds). I asked my sleep dr @ UARS & my symp in an appt in relation to ok to take xyrem, & breathing probs I when I sleep on my back. he responded "UARS is very controversial. " .. (He Sounded dismissive 2 me, but maybe I misinterpreted? ). However, he re-ran my sleep study 2 rule out breathing prob. And "My sleep studies-x2-don't show OSA, so start xyrem." I don't really care what my dx is, I just want to get recommended treatment for the right one (ones).

FYI about UARS- It looks like only 50% of sleeps sites recognize UARS, & not in web md for a diagnosis. So, I don't know what to think other than the is the first syndrome or dx I've seen in 15 yrs other than being hypothyroid that every "fit" my progressive symptoms.

Overall, This doesn't feel right, but maybe i feel this is bec of all the "hype" one has to go thru from the pharm to get xyrem. I also have almost chronic daily headaches - migraines (> debilitating than the very debilitating EDS, & worsens w poor sleep- go figure) & have concern @ worsened headache w xyrem. But, I need sleep, & register very little on both sleep studies I had; i think I am asleep but have freq arousals (96+; I don't remember waking up more than 10-15 min), & get 4 hrs sleep when asleep 7 hrs, & this all interrupted sleep, so adds up to 1-2 hrs of sleep. So, after a decade or more of exhaustion (age 44), I am so tired, that I don't know if I should trust my instincts, or just re-start xyrem without a 2nd dr medical opinion. (Don't have any recommendation 4 another sleep doc after asking many for > 1 mo. My doc may in fact be the best & excellent - just unsure, & could take another 3-12 wks 2 be seen once I find out who to see....) I'm in VA.

My history-- I tried nuvigil- worked gr8 4 energy but not brain fog, and am very allergic to it. haven't had the best luck with adderrall XR, but am working w doc on that end. (Adderal seems to cause me to have sever trouble "thinking" & completing tasks; I think my brain is overstimulated is the best way to describe it, tho my body is finally awake & can't sleep). In hindsight, I think I am almost worse on adderall (tho it appears I am better bec I am awake all day). My primary symp are progressively worsening EDS in the past 2 decades, & unrefreshed sleep regardless of amt of sleep (I have never fallen asleep unintentionally, though have had @ 15 yrs progressively worsening EDS & unrefreshed sleep). I have numerous other sleep deprived symp. - reflux, anxiety periodic, clench teeth & terrible jaw pain, etc etc. Also was dx w fibromyalgia but that never made since 2 me based on my sympt (unless it is only in my neck & feet); & then dx hypothyroid in 2010. It was very depressing after 1-1.5 yrs that the synthroid for hypothyroid tx didn't "fix" the EDS.

Re sleep meds: I have been prescribed 1st ambien (2000 -2005. Ambien bad drug for me!) & later lunesta (lunesta best, past 6 mo take 3 mg nightly). It is almost impossible for me to get up without a stimulant 1 hr before waking) unless I sleep >10-12 hrs, then still hard to get up & I am still exhausted feeling all day.

Sorry if too detailed. Still Searching for an improved quality of life- esp after many years of being given meds or treatments for diagnoses I didn't have. (And some w serious- bad side effects to take me out of work for 6 wks plus). So, guess I may be hyper-sensitive (2much?) to assessing meds.

Thx for any feedback on what u all think. (Again, I know u r not telling me what to do -aka, giving me medical advice). Take care out there!

#2 Hank

Hank

    Member

  • Members
  • 1,013 posts
  • Gender:Male

Posted 19 December 2013 - 10:59 AM

Here is my 2 cents.

 

3grams x2 is a high starting dose. Most people start out at 2.25 grams x2.

 

Xyrem is a central nervous depressant. Because of this, it can suppress breathing, especially if combined with another CNS depressant like alcohol.

 

It takes time for your body to adjust to each dose, which is why you start low and gradually work up to 4.5 gramsx2,

 

My non-professional best guess is that starting out on the 3 gram dose was a bit overwhelming for your body and it suppressed your respiration. No harm, no foul.



#3 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 182 posts

Posted 19 December 2013 - 02:17 PM

That sounds like Cheyne-Stokes breathing and/or CSA ... you should stop the medication for now.



#4 Misseddx

Misseddx

    Member

  • Members
  • 16 posts

Posted 20 December 2013 - 09:04 AM

I really appreciate both of the input you provided. I am still seeking other 2cent opinions from anyone else who knows more about this than me, or other input from u two if there r other thoughts. Thk U!

So anyone out there, pls post input if us have time to read. I really am still struggling daily with extensive EDS and unrefreshed sleep, like many of you all (so thx for your time).

IdiopathicHypersomniac: I don't know if they assessed CSA; my 1st study did say it didn't show Cheyens-Strokes breathing, but I do have chronic and progressive neck pain have w dx degenerative probs in my cervical neck (wh can cause CSA per what I've read). I really feel like my docs aren't putting together all my symptoms. However, after my 2nd sleep test by same doc to assess 1) breathing prob I noted in oct-nov while sleeping on back (bec I had neck prob & couldn't sleep in side as normal), & 2) he wanted to check before starting xyrem) the response was I don't have OSA; & recommend start xyrem. when I asked if they saw breathing problems, the answer was no. but I don't know if I asked the right questions... I've been asking 4 who 2 c 4 a 2nd opinion & no one can tell me any thus far but but out of state docs. (I'm in Va)

My overall ? Is the breathing prob my husband noted above after taking xyrem the 1st night "ok"?? The doc does recommend I try 2grm-2grm next. Is this considered "safe"? My hubby has to do everything bec of my health probs (work, child, house) , & doesn't have time to lose sleep watching me sleep...tho he did bec he was very concerned.

I am really unsure how to proceed. I need to get better sleep, and xyrem could help. I have very interrupted sleep with the PSG on a sleep even with taking lunesta. I was diagnosed with narcolepsy on the naps, but told by an out of state clinical resource (excellent) that : 1) my symp rmirror UARS, which is not recognized by all providers (ex, Stanford and other national facilities do, my accredited sleep practice in Va does not); and 2) since they did not stop any of my antidepressants per protocol, this can cause false REM rebound in 8% of controls. (This is for dx narcolepsy by MSLT). Again, I don't care what my dx is, I just want treatment for the right disorder (after 15 yrs of getting it for the wrong ones as my 'name' implies). I could have just narc with other health probs, both narc & an underlying breathing prob (UARS fits me to a "T"). But so tired and seeking something to try ...

Sorry if there r typos - typed quickly. Again, u all r the best. Thx for being there, esp for us newbies to narc.

#5 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 182 posts

Posted 20 December 2013 - 02:22 PM

They can see UARS by looking at the flow on the nasal cannula, the oxygen level, the signals from the belts, and the leads from your head.  They just need to look at the raw data again.  My lab doesn't score them, but others do.  They're called RERAs, and an arousal has to occur.  If the overall arousal rate per hour is low, it doesn't matter.  The only way to treat UARS is with CPAP.  You mentioned you had difficulty breathing through your nose at night, but again they can see if you're breathing from your nose or your mouth when you're sleeping.  The only way to catch UARS 100% is by sleeping with a narrow tube down your throat and nobody does it because it's very uncomfortable.  My doctor did it and he said he kept puking and choking on it.

 

It's hard to say what a safe dose of Xyrem is because it's different for everyone.  For me, 2.25 grams does nothing, and 3 barely knocks me out for an hour.  The only way you can know for sure is to undergo another study on Xyrem.  A daytime stimulant like Adderall can help too.  With these kinds of problems it's just trial and error until you find something that helps.



#6 Hank

Hank

    Member

  • Members
  • 1,013 posts
  • Gender:Male

Posted 20 December 2013 - 02:27 PM

Since you hit REM in the naps even while on an antidepressant, I would feel confident in the N diagnosis.

 

As far as the breathing goes, you already know you still woke up, I experience central sleep apneas also.

 

The usual starting dose of Xyrem is 2.25 x 2. If your doc is recommending 2 x2 (and 3 x 2 didn't finish you off) you will have to decide whether or not to trust your doctor.

 

I have gone through a nightmare misdiagnosis myself and have found it very hard to trust doctors in the same way again. But ultimately, you will need to accept or reject his opinion.

 

In all honesty, you may never have a "unifying theory" to explain all your medical symptoms. They may be unrelated but play off one another. Each medical specialty is like an island and they only focus on what they know. So finding a doctor who understands it all may be wishful thinking.

 

I would suggest focusing on the most important issue first, which seems to be Narcolepsy. Leave the other issues on the table. You may find that some of them resolve as you begin to feel better.

 

I would think if the breathing issue was really significant, it would have shown up on the tests- just like REM did.

 

So, my suggestion is to simply take one piece of the puzzle at a time.







Also tagged with one or more of these keywords: Xyrem, breathing problems, Respiratory, UARS