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Xyrem Changing Doctors

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#1 Megssosleepy

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Posted 15 July 2013 - 02:11 PM

It was time for my yearly check up and my normal Sleep Doc couldn't see me for months, so the receptionist suggested the other doc in the office.  I never liked my other doc so I was happy to see someone new.

 

Well let me just what a difference he made.  He talked to me rather than rushing me out, and we came up with a solution and wants me to keep in touch with him though the changes.  Told me to email him next week or sooner if needed! WOW!

 

My other doc made me feel like I was asking too much and was not very flexible about med changes, he also dismissed my concerns about my weight loss.  This doc sympathised and pointed out the weight loss giving me helpful suggestions.  He also  had a personality and made me laugh.  I left the office feeling like I was moving forward rather than stuck in my N Hell. 

 

He said my brain became accustomed to Xyrem and needed to take a holiday.  He started out say three months and then said 6 weeks and then said 4, but he said it was my choice and to contact him when I was ready to try again.  We will need to tirate again but not like it was when I first started.  Its really just to make sure you don't shock your body and it can be as easy as 2.5x2 for two days and then up to 3.0x2 ect...

 

So, for now I have a small pill to take at night to help me sleep... once again he said take one, or if needed 2, or if needed 3, but email or call if you need to take 3 so we can discuss. 

 

I finally feel taken care of.  I am scared to make the changes but hopefully it will be for the best. :)



#2 firefly975

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Posted 15 July 2013 - 08:48 PM

What did he prescribe to you to try for sleep on your xyrem holiday?



#3 Megssosleepy

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Posted 16 July 2013 - 09:14 AM

A benzo, but it didn't work well last night, so we may try a baby ambian, the kind you take if/when you wake up in the middle of the night.  I was reluctant to try a sleeping pill, but only sleeping form 12-4 last night has taken its toll on me today. :(



#4 DeathRabbit

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Posted 16 July 2013 - 10:40 AM

Which one and what dosage? I find 0.5mg Xanax conks me out quite well at night.



#5 Hank

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Posted 16 July 2013 - 11:35 AM

A benzo, but it didn't work well last night, so we may try a baby ambian, the kind you take if/when you wake up in the middle of the night.  I was reluctant to try a sleeping pill, but only sleeping form 12-4 last night has taken its toll on me today. :(


Depending upon the benzo, they can be long acting or short acting. Klonopin is frequently used for sleep and is long acting. The reduce REM and Stage 3 sleep and reduce overall sleep quality. Z drugs, like Ambien reduce sleep latency but do not prolong sleep.

Both benzo's and Z drugs can give you a hang-over feeling in the morning.

I have had great results with Trazadone for sleep. I do not wake up at night unless I am awakened and I feel good in the morning.

#6 Megssosleepy

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Posted 17 July 2013 - 09:53 AM

I was prescribed Klonopin 5mg up to 10mg.  I took 10mg last night and still work up at 4am... I am so very tired today and yesterday was bad as well.  I am going to be email the doctor because this is just not going to work.  I definitely have that drowsy hangover feeling. 

 

Yesterday all I thought about all day was how much i wanted to be asleep... I haven't felt like that since before I took Xyrem.  

 

The reason he was going to give me the baby Ambien was to take if I woke in the middle of the night so I could go back to sleep till morning.  

 

I can't imagine waking in the morning and feeling refreshed!  I take my adderall and by the time i'm out of the shower I am functioning.  But, I thinking the klonopin is still in my system and the addy isn't strong enough to make my overwhelming tiredness go away. 

 

Hank, does the tranzadone put you into a deeper sleep or does it just keep you asleep?



#7 Hank

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Posted 17 July 2013 - 11:46 AM

http://www.healthyst...trazodone.shtml

Everything is a trade off. The positives for me with trazadone are:
- some increase in slow wave sleep
- T is not addictive, unlike benzos and Z drugs
-T keeps me asleep all night restfully, unlike ambien, zolpedem, klonopin, sonata, ambien (all of shich I have tried)
-It has a short half life and I do not feel groggy / hung over when I wake up.

I think it is unfortunate that most sleep meds are designed for short term treatment of insomnia- and they tend to be addictive with long term use. I had the unfortunate experience of using Klonopin for several years to help me sleep. When I wanted to switch medication, I learned that I had become chemically dependant (with no phychological addiction). It was hell going off a a drug that I could not just stop- and experiencing withdrawal induced insomnia, anxiety, derealization and more - all from a drug that I just wanted out of my system because it wasn't working.

So, despite any shortcomings Trazadone may have, it is safe for long term use and is non addictive.

#8 Hank

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Posted 17 July 2013 - 11:52 AM

I was prescribed Klonopin 5mg up to 10mg.  I took 10mg last night and still work up at 4am... I am so very tired today and yesterday was bad as well.  I am going to be email the doctor because this is just not going to work.  I definitely have that drowsy hangover feeling. 
 
Yesterday all I thought about all day was how much i wanted to be asleep... I haven't felt like that since before I took Xyrem.  
 
The reason he was going to give me the baby Ambien was to take if I woke in the middle of the night so I could go back to sleep till morning.  
 
I can't imagine waking in the morning and feeling refreshed!  I take my adderall and by the time i'm out of the shower I am functioning.  But, I thinking the klonopin is still in my system and the addy isn't strong enough to make my overwhelming tiredness go away. 
 
Hank, does the tranzadone put you into a deeper sleep or does it just keep you asleep?


Did you mean .5 mg and 1.0 mg? When I started Klonopin i began on the 1/2 of a .25 and, as my tolerance grew, I was up to 1.5 mg.

If you meant .5 and 1.0 mg, that is still a large dose to start on and would certainly account for some of your daytime difficulties. If you did mean 5 and 10 mg that would be an enormous dose and I would strongly reconsider the wisdom of continuing.

#9 Megssosleepy

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Posted 17 July 2013 - 03:49 PM

oh my yes... .5 and 1.0!!  Im sleepy and have to keep double checking my work!

 

Looks like I will be switching... crossing my fingers!

 

I didnt know T produced slow wave sleep??? I thought only Xyrem did that?!



#10 DeathRabbit

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Posted 17 July 2013 - 04:16 PM

Trazodone and other anti-deps don't necessarily produce SWS, but rather suppress REM. It's a subtle but important distinction.



#11 Hank

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Posted 17 July 2013 - 04:29 PM

http://www.ncbi.nlm....les/PMC1427983/

http://www.ncbi.nlm....les/PMC1427983/

These links are for Trazadone and sleep architecture. It decreases stage 1 and 2 and increases 3 and 4. It also reduces awakenings in half but does not increase the duration of sleep.

Although it is an antidepressant, it is sedating and infrequently used for depression.

So far, it has been working like a charm for me at night. I can rely on it and it is not addictive- that is HUGE for me.

#12 Megssosleepy

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Posted 18 July 2013 - 08:06 AM

I just got off the phone with my doc.  He said that this drug is very rarely used for depression and is old, originally used in the 1960s.  He said I may still feel the groggy feeling when I wake, but hopefully it wont last all day like with the klonopin. 

 

It would be exciting if it helped me with my SWS... then maybe I could take a longer break from Xyrem and gain more weight back! I also bet its cheaper!!

 

Thanks for the info... I start tonight and will let you know how it goes!



#13 Megssosleepy

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Posted 18 July 2013 - 08:13 AM

So after reading the articles I am thinking... that in normal people it may increase SWS, but since we can't usually get there on our own I wonder if it helps us as well?

 

I always had the understanding that Xyrem was the only thing that could do that.  My fingers are crossed anyway!



#14 DeathRabbit

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Posted 18 July 2013 - 04:58 PM

http://www.ncbi.nlm....les/PMC1427983/

http://www.ncbi.nlm....les/PMC1427983/

These links are for Trazadone and sleep architecture. It decreases stage 1 and 2 and increases 3 and 4. It also reduces awakenings in half but does not increase the duration of sleep.

Although it is an antidepressant, it is sedating and infrequently used for depression.

So far, it has been working like a charm for me at night. I can rely on it and it is not addictive- that is HUGE for me.

Okay, well that is new. Now, I'm interested. I didn't know there was anything that suppressed REM and alpha at the same time besides X.



#15 Hank

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Posted 18 July 2013 - 05:18 PM

It was new to me too. Honestly, it works like a charm for me. I was put on it when I was in reeaaallly rough shape after I discontinued Xyrem. I was very reluctant to try anything "new" because I have responded so poorly to so many medications.

The most important thing to me for a sleep med is that it is non-addictive. So many of the sleep meds are since they are intended for short term use. So, I am then left in the position of becoming addicted to something that will eventually stop working for me. I have lived through that personal hell and did not want to repeat it. If and when something better comes along that is worth a try, I can just make the switch without experiencing a withdrawal syndrome.

For anyone on a Benzo, (Klonopin/ clonazapam, Valium, Xanax, Ativan, Halcion) please be very careful about long term use. I had absolutely no idea of what I would experience discontinuing a benzo that I was told I "would be on for the rest of my life". The slow taper off was six months of hell and another six months to get my brain back in working order. There is no easy exit strategy off a Benzo other than short term use only.

#16 DeathRabbit

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Posted 18 July 2013 - 05:31 PM

I'm going to do probably request smaller pill denoms when I have to go off my Xanax. Of course, I'm only on 1 mg so, so I figure I'll got .75 for a month, then 0.5, then 0.25, then off.



#17 Megssosleepy

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Posted 19 July 2013 - 10:19 AM

I am really hoping it will work for my stage 3/SWS I have this tiny bit of hope that I won't need to do Xyrem for awhile... I want to gain some weight back..

 

I will start the Traz tonight and hope for the best... anything is better then the fog the Klon puts me under all day.

 

Last night I got upset and made it to my bed where I slept for 2 hours... did not want to do that!! 
 

I need my life back!







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