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Non-Restorative Sleep and "Brain Fog" Really Jamming Me Up

sleep disorder uars mcs

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#1 Renzo12

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Posted 16 November 2014 - 11:26 PM


I'll try to keep it brief: male, mid-30s, average height/weight. Contracted mono/Epstein-Barr roughly 17 years ago and--through some kind of mechanism unknown to me--the infection seemed to change my tolerance to certain environmental factors. Pollens, animal dander, certain chemical smells--all of it seems to antagonize my sympathetic(?) nervous system, which in turn would put me in some kind of hyper-vigiliant state that ruined my sleep.

 

I had three sleep studies done about ten years ago, and all were awful: I barely slept, and what was measured showed some kind of UARS/sleep disordered breathing. Tried CPAP for a year with different pressures, masks, machines, all to no avail. I think some kind of multiple chemical sensitivity is prompting an overreaction and trying to keep me "alert" at night. I have no trouble falling or staying asleep, but wake up totally unrefreshed.

 

I'd rather fix the problem than a symptom, so stimulants like Provigil aren't really appealing at this point. Can any supplements help "calm down" my NS when it feels a perceived "threat" to itself? Right now, I'm taking Zoloft at 75mg/day and Klonopin .5mg before bed for anxiety, of which I have quite a bit. Cortisol is normal in the AM but low the rest of the time: thyroid, etc. is all fine.

 

The sleep issue tends to come and go, and right now, it's acting up. I'd really like to find a way to get more restorative sleep if at all possible. Anyone with any experience that could offer some advice?



#2 FW900

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Posted 17 November 2014 - 02:10 AM

Have you had a sleep study done? If so, did it show signs of excess REM and NREM sleep?

 

I really think Xyrem would be ideal, as it increases stage IV sleep and many people report a restorative rest with it. 

 

You obviously have been trying a lot of things and seem to have an open doctor. Tell him you do not have a restorative sleep and think that increasing the amount of deep sleep you get would be beneficial. The way this could be accomplished is with the use of Sodium Oxybate (Xyrem). Then show him (print or take them on your phone) the studies below backing up what you are saying:

 

 

http://www.journalsl...cles/270708.pdf

http://www.ncbi.nlm....pubmed/12734908

 

Tell him you feel tired and have brain fog. If you already had a sleep study and he's an open doctor he will give you a diagnosis for narcolepsy and prescribe you Xyrem. For insurance reasons, (assuming you have insurance) I suggest he gives you the narcolepsy diagnosis, as without it, the out of pocket cost of Xyrem is in excess of $3000/month.



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#3 drg

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Posted 17 November 2014 - 04:16 PM

Yea the thing about sleep clinics I swear they want nothing more than to diagnose u with sleep apnea and sell you a cpap machine. I doubt they are all honest about it either.

 

But anyways either way the CPAP isn't helping your sleep so that is not the problem/ the only problem.

 

So yeah I guess throw some sleep meds at it and see what works. Most sleep meds are not that good and can cause their own problems.

 

I would say:

 

Trazadone,

clonazepam (well i guess u take that I just read, u could probably take like 1mg - 2mg and it might increase the sedation enough)

 

seroquel and pregabalin are often prescribed but those are low options

 

xyrem/ghb is worth trying but yea it has its problems: you need to redose during the middle of the night, as the drug wears off it is simulating causing both simulation and sedation together when u take your second dose. But it is the only drug that improves sleep quality though. 



#4 TiredAt45

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Posted 22 November 2014 - 08:07 PM

Yea the thing about sleep clinics I swear they want nothing more than to diagnose u with sleep apnea and sell you a cpap machine. I doubt they are all honest about it either.

 

Haha, you too, eh? I felt suspicious of the same thing when I was going to Stanford Sleep Clinic. Though the incentive isn't quite there since they weren't the ones selling the CPAP machine. But still, it seemed like a dogma had developed around sleep apnea.



#5 TiredAt45

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Posted 22 November 2014 - 08:32 PM

I would say:

 

Trazadone,

clonazepam (well i guess u take that I just read, u could probably take like 1mg - 2mg and it might increase the sedation enough)

 

seroquel and pregabalin are often prescribed but those are low options

 

xyrem/ghb is worth trying but yea it has its problems: you need to redose during the middle of the night, as the drug wears off it is simulating causing both simulation and sedation together when u take your second dose. But it is the only drug that improves sleep quality though. 

 


Why clonazepam with such a long half life? Isn't that likely to cause hangover effects into the day? I take Temazepam as infrequently as possible, averaging about 1/week. It produces, for me, little hangover and no perceivable rebound effects. Whereas the hideous Xanax would make me feel like I was ready for a diagnosis of GAD the next day, along with hangover cognitive impairment despite its supposedly shorter half life. Xanax was one of the few drugs I decided to simply dispose of, with an evil/utility ratio clearly > 1. I suspect many GAD diagnoses are set in stone by some of the treatments prescribed. Also, Ambien has worked for me at times, with fairly benign after effects. I'm reluctant to take Trazodone. The last thing you want is to be dependent on a drug to get to sleep. For occasional use it's better than having a nervous breakdown over insomnia. I also tried Mirtazapine for a few weeks. That was the worst. Total cognitive impairment during the day.



#6 TiredAt45

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Posted 22 November 2014 - 09:12 PM

Have you had a sleep study done? If so, did it show signs of excess REM and NREM sleep?

 

I really think Xyrem would be ideal, as it increases stage IV sleep and many people report a restorative rest with it. 

 

You obviously have been trying a lot of things and seem to have an open doctor. Tell him you do not have a restorative sleep and think that increasing the amount of deep sleep you get would be beneficial. The way this could be accomplished is with the use of Sodium Oxybate (Xyrem). Then show him (print or take them on your phone) the studies below backing up what you are saying:

 

 

http://www.journalsl...cles/270708.pdf

http://www.ncbi.nlm....pubmed/12734908

 

Tell him you feel tired and have brain fog. If you already had a sleep study and he's an open doctor he will give you a diagnosis for narcolepsy and prescribe you Xyrem. For insurance reasons, (assuming you have insurance) I suggest he gives you the narcolepsy diagnosis, as without it, the out of pocket cost of Xyrem is in excess of $3000/month.

 

What are the long term implications of GHB?  Since it's a GABA agonist, are the long term effects similar to benzos?  I was prescribed this to test a tentative diagnosis of narcolepsy, but then discovered it's quite complicated to fill.  Requires MD to register, as well as patient.  I wound up putting it on hold, since I have other leads to follow re my non-restoratve sleep problems.

 

What bugs me most about it is the cost, which is entirely unnecessary.  What happens when you've become dependent on a $3000-5000/month gabaergic drug that suddenly you can't source anymore because your Dr. retired, or the rules changed, or your ins. changed, or who knows what?

 

A precarious position to be in.  Makes me truly feel sad for those with narcolepsy which this drug really helps.  Well, I guess it's still better than no drug at all.  But having a backup plan to deal with potential unavailability seems like a wise plan if one ever considers taking something like this for more than a week long trial.
 



#7 drg

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Posted 22 November 2014 - 11:55 PM

Why clonazepam?
1. it is less addictive, with less tolerance than quicker acting benzos.
2. OP is already taking clonazepam so increasing dose could be a better alternative than adding a new media.
3. Although clonazepam is longer lasting, it is less sedating than other benzos so the hang over will be mild even though it hasn't cleared your system by morning.
4. It is what my doctor prescribed me for bad sleep quality / little slow wave, rem sleep.

But yeah the clonazepam is still in effect the next morning. I understand why you would be reluctant to take it.

If you get ghb on the black market I bet you can get it for less than 1/10th of the price. They are thieves for charging so much. All because it is a supposed 'date rape' drug. It would very noticeable slipping it in someone drink because it is very salty.

#8 StevesPetRat

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Posted 23 November 2014 - 04:11 AM

This is not too surprising. EBV causes cells to produce an IL10 homologue, which may shift your immune system into a Th2 state (IL10 is complicated, it has anti- and pro-inflammatory functions); this seems to have ended up exacerbating your allergies.

I'd rather fix the problem than a symptom


Excellent. I shall inform you of the upcoming CMX001 group buy (EBV is a dsDNA virus as are all herpesviruses). Why fix the symptom when you can fix the problem? :)



#9 TiredAt45

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Posted 25 November 2014 - 03:33 AM

If you get ghb on the black market I bet you can get it for less than 1/10th of the price. They are thieves for charging so much. All because it is a supposed 'date rape' drug. It would very noticeable slipping it in someone drink because it is very salty.

 

Add in the cost of a complete analytical chem. lab, or a full analysis run of each procurement to ensure its not garbage, poison, or contaminated with toxins, not to mention a several $100k legal fund in case you get busted which still won't guarantee your freedom, and you'd be better off paying for the real thing or just find another treatment approach.

 

Illegal drugs have a risk/reward ratio of infinity.  Best to avoid like the plague.

 

Jazz pharma has programs for people with difficulties paying.  But still, it's a terrible situation for people that really need that med. that the stupid .gov has created a captive market with a single monopoly supplier.  I suppose the leftists will say "see, the market is broken!"



#10 Renzo12

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Posted 25 November 2014 - 09:40 PM

This is not too surprising. EBV causes cells to produce an IL10 homologue, which may shift your immune system into a Th2 state (IL10 is complicated, it has anti- and pro-inflammatory functions); this seems to have ended up exacerbating your allergies.

I'd rather fix the problem than a symptom


Excellent. I shall inform you of the upcoming CMX001 group buy (EBV is a dsDNA virus as are all herpesviruses). Why fix the symptom when you can fix the problem? :)

 

Steve: thanks for posting this. Nice to hear about a direct connection between EBV and an inflammatory immune response. CMX001 looks like it's still under clinical trial, correct? What do you mean by group buy? Is it available in other countries? And would trying to eradicate EBV in my system also help mitigate the sleep issue, or has it permanently altered my biology?

 

Re: Xyrem, though I've read of it, it sounds like a pricey, very scary drug that doesn't produce long-term effects. I don't see it as being viable.

 



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#11 StevesPetRat

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Posted 26 November 2014 - 07:14 AM

CMX001 looks like it's still under clinical trial, correct? What do you mean by group buy? Is it available in other countries? And would trying to eradicate EBV in my system also help mitigate the sleep issue, or has it permanently altered my biology?

A group buy is when we pool our resources to have a laboratory synthesize a compound that has not yet received full FDA approval. It can be manufactured and purchased "for research purposes only" without running afoul of the patent laws until it has fully passed all stages of clinical trials. I don't think you can buy it at the pharmacy anywhere yet. I'm hoping since it is a modification of an existing antiviral, the synthesis will not be cost-prohibitive.

I suspect-- though I have no way of knowing for sure-- that once the infectious insult is brought under control, your symptoms will improve. This optimism may be wishful thinking on my part: EBV changed me, too, and not for the better. It was in the middle of college and my GPA dropped from 3.8 for the 2 years before EBV to around 2.0 for the 3 years after. I also began struggling with attention and depression problems that have not yielded much to medical intervention. Now, 15 years later, I am finally willing to do something about it. But, those who say EBV is just some benign thing that doesn't have any effect long term are being disingenuous at best (or using the crazy medical definition of "benign" -- a benign tumor can still kill you!!). It has already been linked to various autoimmune diseases.

Epstein-Barr virus (EBV) has been a leading candidate trigger for several autoimmune diseases since the initial description of raised EBV-specific antibody titers in patients with SLE in 1971 (23). EBV is a biologically plausible candidate since it is ubiquitous in nature, establishes a lifelong dormant infection with continuous virus production due to reactivation, and modulates the human immune system. In its immune-modifying function, EBV rescues infected B cells via latent antigen expression and assists their differentiation into memory B cells, in which it persists. In addition, the virus continuously stimulates strong T-cell responses via chronic antigen presence, and this immune control is crucial to prevent EBV-associated malignancies.

By the way, stress can readily reactivate the infection.

 

"But I don't have an autoimmune disease, so I don't care about my latent EBV infection!" That's a bit like saying "I don't have lung cancer, so smoking is fine!"

 

Alright, anyway, I digress. But my optimism is also based on the responses of people who have healed after treating sometimes decades long infections such as Lyme. With EBV and other herpesviruses, though, it may take up to 7-10 years of antiviral treatment to fully eradicate the virus. This agent has an excellent safety record in clinical trials, but they don't typically run 7-10 years... Still, I'm personally willing to roll the dice for a chance to get my "true self" back.

 

Maybe I should spend less time posting lengthy, tangential responses online and more time raising the funds for this little operation. 







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