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Zombie Hell 2: still stuck and shuffling through 1/3 of a life

poor recovery unrefreshing sleep dysautonomia meta-medical advise nutrient malabsorbtion chronic illness fatigue zombie hell

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#31 Gordo

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Posted 16 September 2017 - 05:13 PM

@Gordo

Does it matter the vile? No spinning or anything like that? I've never really sent my blood over like this, except with Igenex. Would overnight fedex work?

 

I prefer at least 5ml which is the standard vial draw.  You want to ask for whole blood, no centrifuge.  Vacutainer color codes are purple (with EDTA anticoagulant) or Red (no additives).  

 

Secure the top of the test tube with a piece of tape, wrap in a paper towel, then double bag it in zip lock bags (preferably a heavy duty freezer bag). Send me the tracking number so I know when to expect it.

 

If anyone else wants to send me a sample for free analysis, just PM me.   I will send you back pictures of anything interesting that I find.  

 

Regards, 

Gordo



#32 birthdaysuit

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Posted 20 September 2017 - 11:09 PM

@Gordo; Okay, thanks.

I talked to my nurse today and he said next week he'll give me an extra vial. I didn't have time to do it this week. So next week. So, what do you perfer the 5ml with the anti-coagulate or the 5ml eith the re cap and nothing in it?

Also, should I put a cold black or ice pack in with the vial or will this compromise the blood. I've read it's best in the case of lyme to wait a day or two and keep it warm.

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#33 Gordo

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Posted 21 September 2017 - 01:52 PM

@Gordo; Okay, thanks.

I talked to my nurse today and he said next week he'll give me an extra vial. I didn't have time to do it this week. So next week. So, what do you perfer the 5ml with the anti-coagulate or the 5ml eith the re cap and nothing in it?

Also, should I put a cold black or ice pack in with the vial or will this compromise the blood. I've read it's best in the case of lyme to wait a day or two and keep it warm.

 

Nothing in the vial is best.  This paper describes the damage EDTA (anticoagulant) does to the red blood cells.

 

And yes, its best to keep it at room temperature, so no ice.

 

Regards,

Gordo


Edited by Gordo, 21 September 2017 - 01:52 PM.


#34 brainfogboy

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Posted 21 September 2017 - 06:09 PM

All I did was have them draw an extra vial, and I put that vial in a priority box from USPS and sent it.  Don't over-complicate it.



#35 Tony Rantala

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Posted 23 September 2017 - 09:15 AM

What do you eat? And when?


Edited by Tony Rantala, 23 September 2017 - 09:15 AM.


#36 Dichotohmy

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Posted 28 October 2017 - 07:39 PM

Well, folks, I think I have finally found a reliable explanation for the betrayal of my body to my own wants and agency. After much critical thinking, diagnostics, and considering of my own familial history, I am nearly 100% convinced that the answer is Ehlers Danlos Syndrome.

 

Now, I actually considered this possibility a few years ago, but dismissed it for some reason - even after noting that I definitely have the classic joint hypermobility and elastic skin. I think I wrongfully assumed that because I am a man, the odds were stacked against me, as EDS has an estimated 80-90% of sufferers being women. It took a visit to a rheumatologist, who was quite surprised to see the things I can do in terms of flexibility and told me I have something called Benign Hypermobility Syndrome. Logically it follows that when one's joints just aren't put together tightly, that the stabilizing muscles have to pick up an excessive amount of the slack. This, predictably, results in joint injuries, pain, and other musculoskeletal issues following physical activity and/or exercise. It turns out that the current thinking dictates that BHS and EDS hypermobility subtype are, for all intents, the same thing. As best as I can tell, the determining factor about which one you get labeled with comes down, as usual, to medical politics and individual physician's personal bias. If the medical powers don't want to send you for a genetic test, or they just don't believe that you have EDS, you get labeled with a useless diagnosis like BHS. I personally believe that it is EDS classic subtype for me, but that is really splitting hairs.

 

I dug a little deeper and see that I score a solid 7/9 on the Beighton criteria, and I'm kind of on the fence about the 5th fingers on either side. Then, moving on to the Brighton criteria, my hypermobility satisfies one major criteria, and I also have four minor criteria and what is clearly an immediate familiy history. In addition to this, I have some things that are oddly specific to EDS, like atrophic scarring, floating patellas, Trendelburg's sign, and mysterious movable hardened nodules along my shins and forearms (subcutaneous spheroids), that I don't see what else to think. My mom has terrible osteoarthritis, multiple replacement joints, Raynauds, skin tags, elastic skin, and other signs, and as I only recently recall, mentioned how she was quite hypermobile before her body started falling apart in her late 30s. One of my sisters shares the same early onset arthritis, musculoskeletal curiosities, and fatigue and dysautonomia cooties that I have thoroughly described.

 

Connecting the dots, EDS immediately explains the fatigue, post-exertional worsening of symptoms, joint crepitus and injuries, and other musculoskeletal complaints. Indirectly, because collagen is literally everywhere in the human body, EDS can also explain everything else as well. I most likely have gut complications, such as intestinal permeability, that explains my trouble with weight, nutrient malabsorption, and post-prandial zombieness. Finally, dysautonomia, caused by the biological stress over numerous micro-injuries sustained by my muscles having to work too hard, can explain the non-restorative sleep, every cognitive curiosity, and of course, the orthostatic issues, cardiovasular abnormalities, electrolyte imbalance, and cold intolerance. Looking back, I have had most of these problems all of my life and I probably hit the wall four years ago because I was subjecting myself to excessive biological stress. One thing most people don't seem to understand is that "stress" includes physiological stressors, and indeed the notion of stress worsening pre-existing conditions is plausible far beyond the psychological realm. Psychological stress being a cause of ill health is a popular notion among doctors and lay people alike, but too often biological stress is minimized and underappreciated by these same people. Its probably even worse being a male and a military veteran, where my indoctrination of "push through the pain," "mind over matter," and putting on a tough face and not complaining really fucked me over.

 

In particular, I continue to be amazed by the importance and gravity of sleep. I now believe that the non-restorative sleep, parasomnias, and other sleep wierdness I have written about comes down to adrenaline. This article gives an interesting take on the issue and I think is very relevant to anyone suffering from any chronic disease. Inescapable and unavoidable biological stress from merely living causes a constant adrenaline response that destroys my sleep, probably downregulates the catecholamine receptors in one's brain leading to ADHD and other cognitive issues, and leads to dysautonomia. Personally, the part about "parasympathetic responce phase" really resonates with me as this has been a continuing theme. Its like, I don't get the pure sympathetic responce one would expect from constant circulating adrenaline, but instead, its like the parasympathetic nervous system is usually on at full blast as well. Think of the stereotypical 80-year old man in Florida driving with the brakes constantly depressed, and that's my life. Ultimately, I reason that combating adrenaline will help make a real difference in addition to the pacing I already use. I still don't know how to do that as clonidine gives me paradoxical effects and propanolol and atenolol just don't work well enough. Maybe guanfacine is on my horizon. 

 

EDS and the complications explains every single symptom on my list except one: the lymph nodes in my groin. I thought these were chronically swollen, but a physician examination and CT scan confirm that these lymph nodes are permanently calcified. Oddly enough, I also have some "benign" calcification on one side of my thyroid as confirmed by examination and ultrasound. I attribute these calcified masses as signs that, in fact, my immune system did sequester some infection in these places; however, the importance of these isn't really apparent or significant. This probably explains what happened in terms of the mystery leg bite I had in the summer of 2013, as of course, those lymph nodes in the groin would have "drained" that leg. There is a chance I could still have chronic EBV, chronic strep, pheumoniae bacteria, or tick-borne infections complicating matters, but I'm just not sure how important that is given the fact that EDS will contribute a massive amount of issues into the equation. I mean, what's the point of confirming and/or treating active infections when the EDS is not really treatable and will itself leave my body chronically run down and dysautonomic - perhaps, to some extent or another, for rest of my life barring a miracle cure in the future? The cynic in me says even if a cure does come along, it will probably be something like stem-cell therapy or IVIG that only the top 1% in wealth, or the impeccably insured, will be able to afford or have access to. It is always the same when a miracle drug or treatment comes along; it takes a long time to trickle down to the masses who are, by the disease burden they carry, unable to achieve wealth or inroads to good medical treatment.

 

Effectively, I can say the story of Zombie Hell is effectively settled for me. Perhaps this story and resolution can serve as use for those to whom my experience resonates. My particular outcome is not a good one, and while I was legitimately hoping that I could find a root cause that is treatable and curable, I have to admit that I'm not surprised it came to this. Some people are just born with the short end of the stick and forsaken by the cosmos, and faced with a lifetime of illness that is dehumanizing and tough to rationalize in terms of what kind of higher power would do this to people.


Edited by Dichotohmy, 28 October 2017 - 08:10 PM.

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#37 RYAN474

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Posted 29 October 2017 - 05:29 PM

Dichotohmy, 

 

Interestingly, I just came across this last week. An interview with my CIRS Doctor, where the interviewer asked a question about Ehlers Danlos Syndrom, and the possible connection with CIRS (Chronic Inflammatory Response Syndrome). 

 

At the following link is the specific time in the video where that question and answer is. It's not some silver bullet or cause-effect, since I understand EDS is extremely complex. However, is an interesting connection and CIRS diagnosis and treatment is something that may be worth looking into. I found another link, below it, that is pretty informative on this connection and other info related to EDS. 
 
 

cleardot.gif


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#38 Dichotohmy

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Posted 31 October 2017 - 09:19 PM

Dichotohmy, 

 

Interestingly, I just came across this last week. An interview with my CIRS Doctor, where the interviewer asked a question about Ehlers Danlos Syndrom, and the possible connection with CIRS (Chronic Inflammatory Response Syndrome). 

 

At the following link is the specific time in the video where that question and answer is. It's not some silver bullet or cause-effect, since I understand EDS is extremely complex. However, is an interesting connection and CIRS diagnosis and treatment is something that may be worth looking into. I found another link, below it, that is pretty informative on this connection and other info related to EDS. 
 
 

cleardot.gif

 

Thanks for the interesting links.

 

In the video, is Dr. Berndtson getting at that because loose joints are inherently more likely to get injured and cause muscle injuries, that this history of injuries, over time, sort of primes the body and/or immune system to increasingly over-react to subsequent injuries? I find the video a little hard to hear and to follow, but I think that's the gist of it. If so, I find the idea makes a lot of intuitive and practical sense and it ties in with the (new and speculative hypothesis I have read about) idea of memory B-cells in the immune system over-reacting in other chronic illness and being the reason these conditions are so chronic.


Edited by Dichotohmy, 31 October 2017 - 09:23 PM.


#39 brainfogboy

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Posted 01 November 2017 - 12:13 AM

I saw Dr. Berndtson when he was here in Illinois, about a year ago.  He came off as a quack.  I don't think he truly understood how sick I was, and resorted to telling me that my anger problems were likely holding me back.  I was physically unable to follow his advice, and I am now under the impression that if the doctor cannot understand why his patient cannot follow his advice, then he should not be in charge of anyone's health.

 

Be careful with this man.

 

I think a lot of that podcast is speculation, and until definitive testing is done to pinpoint the problem it could literally be anything.

 

Lyme

Candida

SIRS

Chronic Fatigue Syndrome

Adrenal Fatigue

...

etc.

 

Do any of these people know what they're talking about at all?  I have developed a zero tolerance for bullshit.  They can talk all they want about the immune system, but when it comes right down to it I tell them:

 

Cut the bullshit and get me better.  Just get me better.  I don't care if I have to do Indian Raindances... just get me better.  You're the doctor, I'm the patient, and I do not care what it takes, just DO YOUR FUCKING JOB.

 

I wonder if I we were high and mighty CEOs of large corporations, and had access to the best doctors in the world.... would we have struggled with this for this long?  What would have happened if we stopped going to work and the company was at stake?  Would we have been rushed to the front of the line?  Would we have gotten over this sooner?

 

It makes me wonder if it's because we're lowly "peasants" that is holding us back.  The medical industry is a joke.  We shouldn't have to be posting on forums and speculating over whether or not a doctors words are legitimate.

 

I wish you the best of luck DIchotohmy.  I, however, refuse to give into this shit, will not stop until a cause is found, and once fixed will rain hell on these mother fuckers for ruining our lives.  This is unacceptable.

 

Cut the bullshit and get me better.



#40 brainfogboy

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Posted 01 November 2017 - 04:09 AM

That podcast could have been 5 minutes.  Long, drawn out bullshit.  Everyone is always selling something.



#41 Dichotohmy

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Posted 02 November 2017 - 08:04 PM

Do any of these people know what they're talking about at all? I have developed a zero tolerance for bullshit. They can talk all they want about the immune system, but when it comes right down to it I tell them:

Cut the bullshit and get me better. Just get me better. I don't care if I have to do Indian Raindances... just get me better. You're the doctor, I'm the patient, and I do not care what it takes, just DO YOUR FUCKING JOB.

Honestly, the biggest take away I have gotten from years of trying to fix myself is that a huge portion of medical "science" is best to be accepted for entertainment purposes only. Some of the worst offenders are neuroscience, immunology, and anything else that is inherently difficult to study, where answers largely amount to "whose bullshit do I want to believe?"

Dr Berndtson's ideas are interesting, as are the cutting-edge ideas of many people, but I don't really take any of it too seriously.

It makes me wonder if it's because we're lowly "peasants" that is holding us back. The medical industry is a joke. We shouldn't have to be posting on forums and speculating over whether or not a doctors words are legitimate.

Without question, the rich have access to better healthcare. I don't think there is a conspiracy to subjugate the health of the 99% through sub-standard healthcare. On the other hand, I highly suspect there is a growing conspiracy in managed healthcare to cut costs and increase profits, by way of various exclusionary tactics, which ends up negatively affecting the 99% who cannot afford access to the top, non-managed care doctors that the rich can afford.

Feel free to email me again if you want to, brainfogboy.



For my own way going forward, I am going to largely accept the limitations of my illness and pick my battles wisely so I can continue to try to just get on with life in the most meaningful way I can. Some approaches I plan to take include:

1. Continue to try whatever it takes to improve sleep quality.

2. Hormones. In particular, testosterone seems to be linked to joint laxity and worse symptoms of EDS/hypermobikity-spectrum syndromes, so I want to be re-evaluated.

3. Get genetic testing to seal the deal with EDS if I can get my similarly-affected immediate family to do it too. Otherwise, there isn't much point because i'm already diagnosed with a hypermobility-spectrum syndrome and the treatments are the same as for EDS.

Edited by Dichotohmy, 02 November 2017 - 08:10 PM.


#42 RYAN474

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Posted 10 November 2017 - 05:31 AM

I don't recall if this was mentioned already but mast cell activation disorders are getting more attention and are worth looking into. Broad array of symptoms, and can be treated somewhat effectively by non-sedating H1 blocker OTC allergy meds plus H2 blocker meds. I am going to try this. https://drruscio.com...awrence-afrin/ 

 

 



#43 Krocius

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Posted 23 November 2017 - 07:31 PM

Have you tried prolonged fasting(more than two days)? How have you reacted?



#44 Mind_Paralysis

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Posted 24 November 2017 - 05:17 PM

If it's truly adrenergic activity keeping you up at night, then the Alpha-2-agonists, such as Guanfacine or Clonidine will help - they decrease noradrenergic and adrenergic activity in the sympathetic nervous system - they have also been linked with improving sleep quality.

 

You might also want to do a sleep-study and rule out that you don't have what I have - PLMD - Periodic Limb Movement Disorder. The symptoms, and my own unrefreshing sleep, have been greatly improved by the use of Gabapentin, an antiepileptic drug which increases time in Slow-Wave, phase 4 Sleep.

Perhaps a combination of Clonidine (more sedating than guanfacine) and Gabapentin could give you some small relief?

 

Regular hypnotics do not in general improve sleep quality, and usually don't have a benign effect on PLMD either, it should be noted.

 

 

Btw, don't give up hope on EDS being cured, or at least perhaps lessened substantially - and it might not take as long as you think, for a potential effective treatment to come about - gene-therapy is evolving rapidly right now - there's not just CRISPR, there's other techniques as well, likes ZFN and multiple others. Several of these seem to be about to start a few trials for HUMAN testing as well! Now, the diseases which are being targeted are in general not as advanced as EDS, but this is merely the beginning... once the simpler genetic diseases can be treated, then we will move on to more advanced ones.

 

 

https://en.wikipedia...vement_disorder

 

Neuronal ensembles sufficient for recovery sleep and the sedative actions of α2 adrenergic agonists

https://www.research...nergic_agonists

 

Enhancement of Slow Wave Sleep: Implications for Insomnia

https://www.ncbi.nlm...les/PMC2824211/

 

 

A human has been injected with gene-editing tools to cure his disabling disease. Here’s what you need to know

http://www.sciencema...here-s-what-you

 

(the above is regarding Hunter's Syndrome, a disease with a really bad prognosis - we'll know if this treatment with ZFN-tech works in a few months...if it does, then this is merely the beginning.)


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#45 Dichotohmy

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Posted 24 November 2017 - 06:33 PM

Have you tried prolonged fasting(more than two days)? How have you reacted?

 

No I haven't tried fasting that long, because I have reacted badly to even intermittent fasting. The longest fasting I can recall in my entire life, and that includes being sick with various gastrointestinal viruses or food poisoning, is 20 hours. I haven't made it past 20 hours, because at that point the nausea, hypoglycemic-type symptoms, and fatigue becomes way too much.

 

I can say with a good deal of confidence that I just do better with regular eating and 2500-3500 Kcal per day. Now, that is a modest-large caloric excess, yet curiously I do not gain any weight eating like that. The only possible explanation I have for this is either gut malabsorption, or that my muscles -- and at 69" tall and <130 pounds I don't have a lot of muscles -- are incredibly energy hungry. Maybe both explanations are equally important. When I eat at a level that, on paper, is more in accordance with what my basic metabolism and activity level should requires, the fatigue, poor sleep quality, and zombieness becomes so much worse. 

 

 

If it's truly adrenergic activity keeping you up at night, then the Alpha-2-agonists, such as Guanfacine or Clonidine will help - they decrease noradrenergic and adrenergic activity in the sympathetic nervous system - they have also been linked with improving sleep quality.

 

 

You might also want to do a sleep-study and rule out that you don't have what I have - PLMD - Periodic Limb Movement Disorder. The symptoms, and my own unrefreshing sleep, have been greatly improved by the use of Gabapentin, an antiepileptic drug which increases time in Slow-Wave, phase 4 Sleep.

Perhaps a combination of Clonidine (more sedating than guanfacine) and Gabapentin could give you some small relief?

 

 

Thanks for chiming in. Clonidine gives me paradoxical effects independent of dosing. I have read about how a low dose of clonidine is more likely to have stimulatory effects, while doses over .2mg become sedating, but in my case, anything from .05mg to .4mg just results in stimulatory effects that are stronger with escalating dose. Think of sleeping on a psychostimulant, and that is what clonidine is like for me. The beta blockers do not do this to me, but don't seem to improve sleep quality for me either. Guanfacine is at the top of my list of things to try.

 

My polysomnogram revealed only one single limb-movement incident. That is to say, it also revealed a large amount of non-specific arousals (index of 10 or so), which like PLMD, is enough to destroy one's sleep quality.

 

 

Regular hypnotics do not in general improve sleep quality, and usually don't have a benign effect on PLMD either, it should be noted.

 

I agree, hypnotics are the road to nowhere in my experience. Gabapentinoids, Z-drugs, and low-dose benzos, have all been disappointments for me. NMDA-antagonists have also been a disappointment. As I've described again and again, the only thing anti-glutamate that consistently helps my sleep quality is low-dose alcohol.

 

 

 

Enhancement of Slow Wave Sleep: Implications for Insomnia

https://www.ncbi.nlm...les/PMC2824211/

 

These are a lot of things I have known for a while about sleep architecture. One big take away I have gotten from reading about it is that slow wave sleep (SWS) is something the brain seems to ration, and that SWS is easily disrupted. A hypothesis I have is that SWS is intrinsically linked to favorable bodily homestasis. So that means that unfavorable homeostasis such as that caused by biological or psychological stress and energy depletion, which are the very states in which the body needs SWS in order to recover from, are paradoxically much more likely to result in less SWS.

 

Just because the article mentions it, 5HT-2a antagonists like amnitryptiline, trazodone, and cyproheptadine are other medications that have been a disappointment for me. I have to admit I am curious about anticonvulsants like Tiagabine or topiramate, as these are one of the last medication-classes I have never tried to combat non-restorative sleep.

 

On the other hand, SWS is not the only part of the puzzle for me. While my polysomnogram data, as well as my crude experiments with things like the Zeo and smart-phone apps do demonstrate I have reduced SWS, they also show that I have significantly reduced REM and a prolonged REM latency. I personally believe REM is just as important a piece of the puzzle.


Edited by Dichotohmy, 24 November 2017 - 06:43 PM.


#46 Diesel

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Posted 06 December 2017 - 05:44 AM

Do you also get intense violent vivid dreams on a daily basis?

For sleep quality, 150-300 mg Pregabalin helps a lot in my case, but makes all the cognitive symptoms worse. It doesn't solve the extremely violent dreams. Adding 150 mg Venlafaxine either blocks out all dreams for me or simply makes me unable to remember them. Without Pregabalin, it makes me stuck in a very shallow sleep but with Pregabalin it's overall synergistic when it comes to sleep quality.


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#47 Mind_Paralysis

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Posted 06 December 2017 - 09:34 AM

Do you also get intense violent vivid dreams on a daily basis?

For sleep quality, 150-300 mg Pregabalin helps a lot in my case, but makes all the cognitive symptoms worse. It doesn't solve the extremely violent dreams. Adding 150 mg Venlafaxine either blocks out all dreams for me or simply makes me unable to remember them. Without Pregabalin, it makes me stuck in a very shallow sleep but with Pregabalin it's overall synergistic when it comes to sleep quality.

 

Not likely. Such dreams usually occur during the REM phase 3 of sleep, and if he has decreased REM-sleep, then he's actually likely to dream less than the average person.

 

It almost sounds as if you have NIGHTMARE DISORDER, actually... a bit like the tormented Swiss artiste extraordinaire H.R Giger. If you look at his photos, you will see a man tormented by disrupted sleep, it's quite clear. He has told how the Alien monster, the Xenomorph, came about from a recurring dream wherein the beast kept tormenting him in almost unbelievably violent ways, 

 

https://en.wikipedia...htmare_disorder

 

It's good to hear that the combo of Venlafaxine and Pregabalin works - especially interesting that Pregabalin works, since that's the big-brother of little-brother Gabapentin, which I use. Both drugs work more or less the same way, indirect modulation of GABA-pathways, and both increase time in SWS stage 4, deep sleep.

 

There's apparently a drug called PRAZOSIN, an Alpha1-blocker, which helps with these symptoms - perhaps a combo-regimen of Prazosin, Propranolol and Guanfacine could be helpful to the op, Dichotomy?

 

https://en.wikipedia.org/wiki/Prazosin

 

 

@DICHOTOMY:

 

New experiment - I suggest you request Prazosin, it's a new way of modulating NE, which you haven't tried yet.

 

In the meantime, while you wait for that, I suggest you try COMBINING Propranolol (or any other beta-blocker) and Clonidine - they might be synergistic in you, since the combination of both is used for the treatment of Adrenergic Storm - the combo could block the paradoxical reaction you get from Clonidine.

 

Try it. Just go low in the dosing, start with a regular dosage of propranolol, something like... 20 mg, and then add .05mg Clonidine. Do this around 19.00 hours, and then see what happens. If you don't notice anything paradoxical, then add more Clonidine - if you don't notice anything when you reach the more reportedly sedating dosages of Clonidine, then you add a sleeping-agent, if needed, and go to sleep.

 

So, maybe a schedule like this:

 

19.00 - 10mg Propranolol, .05 mg Clonidine.

20.00 - 10 mg Propranolol, .05 mg Clonidine. (if you notice stimulation, then add 10 mg MORE propranolol)

21.00 - 10 mg Propranol, .10 mg Clonidine

22.00 - 10 mg Propranolol, .05 mg Clonidine (like previously, if necessary, add 10 mg more Propranolol, if you notice stimulation)

 

Total Propranolol: 40 - 60 mg.

Total Clonidine: .250 mg.

 

That oughta' do the trick... Add low-dose Gabapentin (150 mg) and you should be golden.

 

 

If this fails, and a trial of Prazosin fails, then you obviously go to the next route: you combine all three NE-blockers. The cascade should literally kill another man - if that doesn't work, then you're not human.


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#48 Dichotohmy

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Posted 06 December 2017 - 12:34 PM

Do you also get intense violent vivid dreams on a daily basis?

For sleep quality, 150-300 mg Pregabalin helps a lot in my case, but makes all the cognitive symptoms worse. It doesn't solve the extremely violent dreams. Adding 150 mg Venlafaxine either blocks out all dreams for me or simply makes me unable to remember them. Without Pregabalin, it makes me stuck in a very shallow sleep but with Pregabalin it's overall synergistic when it comes to sleep quality.

 

I only very rarely get these type of dreams. My dreams are actually pretty realistic, but not quite vivid. The subject matter of my dreams is almost always mundane, normal-life type stuff. When I can remember violent-subject matter, or dreams where I am being threatened or persecuted, I always fight back against the malevolent force in my dreams. Perhaps I do not have violent, intense subject-matter in my dreams very often because these types of dreams don't scare me or trouble me at all. Certain factors like sleep deprivation and exhaustion, or gastrointestinal upset are always the triggers for those intense-subject matter sort of dreams. Because I avoid those factors, the intense-subject matter dreams are rare. 

 

I am at a REM sleep deficit according to the Zeo and smart-phone aps. On a very rough average, I only get around 40-minutes of REM per night. Anything like serotonergic antidepressants, cannabis, too much alcohol, hypnotics, or anything else that is known to reduce REM sleep duration definitely decreases the quantity of REM sleep for me and this makes me feel noticeably worse - physically, cognitively, and mood-wise. Conversely, when I get an increased amount of REM sleep for some reason, I feel noticeably better.  

 

The take away as I see it is that like all things, too much REM is bad, but too little REM is also very bad. This doesn't surprise me because I see that principle applies again and again for unrelated things.

 

Not likely. Such dreams usually occur during the REM phase 3 of sleep, and if he has decreased REM-sleep, then he's actually likely to dream less than the average person.

 

 

Correct, at my rough average of 40-minutes of REM sleep per night, I have significantly less REM than the average person. The tools I mention that give me this sleep-architecture data are pretty crude, but are the best a regular person can do. Proper brain EEG measurements like in a real polysomnogram are completely impractical.

 

 


It almost sounds as if you have NIGHTMARE DISORDER, actually... a bit like the tormented Swiss artiste extraordinaire H.R Giger. If you look at his photos, you will see a man tormented by disrupted sleep, it's quite clear. He has told how the Alien monster, the Xenomorph, came about from a recurring dream wherein the beast kept tormenting him in almost unbelievably violent ways, 

 

https://en.wikipedia...htmare_disorder

 

I agree that this is a possible explanation for Diesel. Dreams also occur in NREM sleep stages, and nightmares, as opposed to similar night-terror phenomenon, can also occur in deep NREM sleep. The only way to know for sure is of course, EEG data. I would gamble though, that because the venlafaxine helps, Diesel's problem is with the REM stage.

 

https://www.psycholo...m-dream-content

 

 

 

 

@DICHOTOMY:

 

New experiment - I suggest you request Prazosin, it's a new way of modulating NE, which you haven't tried yet.

 

In the meantime, while you wait for that, I suggest you try COMBINING Propranolol (or any other beta-blocker) and Clonidine - they might be synergistic in you, since the combination of both is used for the treatment of Adrenergic Storm - the combo could block the paradoxical reaction you get from Clonidine.

 

Good suggestions. I've actually never thought to combine the clonidine with propranolol and possible synergism sounds like a logical possibility. I guess the paradoxical effects I got from clonidine turned me off entirely - even to combine it with propranolol. Prazosin is going on my list as well if I can find a source for it.

 

 

For the record, the other med classes I can think of that I have left to try in order to improve sleep quality are: anticonvulsants, anti-psychotics, and the new and unique orexin-antagonist Belsomra. Low dose lamotrigine or topiramate seem like they could have potential and are on my list. I'm extremely leery of APs because most of them have anti-histamine effects and I know that MOA is not useful for me. That's on top of the fact I don't want to be extra sedated or face the possibility of side effects like akathisia and tardive dyskinesia because of APs. Perhaps an atypical AP among atypical antipsychotics like low-dose amisulpride could help. Belsomra is pretty much out because its so new that I can't afford it out of pocket on my budget, and it is not in the VA's pharmacy formulary.


Edited by Dichotohmy, 06 December 2017 - 12:48 PM.


#49 Kinesis

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Posted 06 December 2017 - 10:33 PM

Can’t promise it would have the same effect on you, Dichotohmy, but amitriptyline had a striking effect on REM sleep for me. Taken at bedtime, the first thing that I noticed was waking up having had vivid, intense dreams.

#50 Dichotohmy

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Posted 21 January 2018 - 05:55 PM

Hello again, fellas. In an effort to not ghost this thread, and for the curiosity of those for whom my story resonates, here's another update.

 



Can’t promise it would have the same effect on you, Dichotohmy, but amitriptyline had a striking effect on REM sleep for me. Taken at bedtime, the first thing that I noticed was waking up having had vivid, intense dreams.

 

Amitriptyline and Trazodone both help me a little bit in terms of delivering more restorative sleep; but both are intolerable to me due to next-day sedation and increased somnolence. Amitriptyline leaves me very groggy into the next day, while trazodone only leaves me mildly groggy.

 

Taking a look at the pharmacology of Amitriptyline one thing in particular that jumps out at me is that AMI has a significantly more powerful affinity for the H1 receptor than Trazodone does. Combine this effect with the significantly longer half life of AMI as compared to Trazodone, and it is just no surprise that AMI such exaggerated next-day sedation.

 

I do not like or benefit from CNS-active anti-histamines like these. I've been going on non-restorative sleep for over four years now, so grogginess and somnolence is something that is already heavy and difficult to function through. The subtle benefits of these TCAs just isn't enough for me to want to use them. For a lot of people, these TCAs do in fact help sleep initiation and improve sleep quality, so this is a good suggestion on your part. One thing I cab say is that TCAs make sleep initiation extremely easy for me. Though, because I do not have difficulty falling asleep at night, this is a non-starter. I think if I did have significant sleep-onset insomnia, my opinion on these drugs would be very different.

 

 

 

In other news, I'm not sure if I'm just getting used to a new normal, or if I am making bonafied progress, but I feel like I have improved to a pretty consistent 50%. That beats 1/3 of a life by a large margin, so I am happy about that. Below I'm going to just extrapolate on some developments and thoughts.

 

- I have been using Jarrow extended-release NAC for three months now. This NAC makes a BIG difference in countering the effects of poor sleep quality for me. one 600mg tablet is enough for most days, but on really rough mornings, 1200mg is more suitable. Taking a bigger dose does not help and instead leaves me with increased somnolence (still no ability to nap) and a marked degree of mood and cognitive flattening. I dare say this might be the reason for why I feel as better as I do. For the record, immediate release NAC powder or capsules from multiple brands does not have anywhere close to the benefit I have gotten from Jarrow's SR formula. I also see this as an encouragement to finally try some Lamotrigine, which I will order soon.

 

- For me, it is essential that I use proper pacing. I am not one of those who will ever improve with aggressive rest. That means not only should I avoid doing too much, but I need to ensure that I do enough. Not only does resting too much make me very frustrated and bored, but it also makes me more fatigued and makes my sleep quality worse - in turn, everything else thus becomes worse as well. Now, obviously it's much more easily said than done to balance energy use:rest, but I am starting to learn how to do it. This means both quitting while I'm still ahead, when I'm feeling good and don't want to stop doing things, but also means a mild degree of pushing through fatigue and malaise when I'm feeling bad and want to become one with the couch. If there is anyone out there reading and for whom aggressive rest is not working, and is experiencing chronic fatigue, either as a symptom of something else, or as a consequence of CFS, I urge you to find a good pace that balances rest with activity. Don't get me wrong - I don't mean stop listening to your body. What I am trying to say here is that if your body is telling you that it hates to rest, you should listen to that voice just as you would listen to your body when it's telling you that you're about to collapse if you don't stop pushing it. At the same time, Its important to state that an ability to both listen to, and sometimes overrule, the signals coming from your body, is a skill that you are only going to gain from experience.

 

- I read the actual radiologist's report of the CT scan I had some months ago, and it reveals one or more small (<9mm) nodules in my lungs. My PCP, or the radiologist, did not volunteer this information to me. Now, I'm not climbing out on a limb and saying that the sky is falling over this test result, but it seems like a very logical finding given the fact that I had moderate walking pneumonia 10 years ago. I had walking pneumonia and severe sinus infections twice while I was in MC boot camp, which were not adequately treated. If I were a free man, the respiratory infections were severe enough that I probably should have went to the ER. Because of this, It might be logical to assume that I am a carrier of mycoplasma or chlamydia pneumoiae infections that could be complicating my overall health and symptom presentation. The take away here is: always read your doctor notes and test data, and do not just accept your doctor's silence or insistence that "everything is normal."

 

- I'm going to get another polysomnogram this year. I just can't shake the possibility that I have sleep-disordered breathing - likely UARS. I have an atypical, non-allergic rhinitis that, even though I have under control on the surface, there is the possibility that whatever neurological cooties cause non-allergic rhinitis may also influence the sleep-architecture abnormalities I have evidence for. If xPAP treatment doesn't deliver to me the gift of refreshing sleep, at least a proper UARS or sleep apnea diagnosis can help bolster my medical file. 

 

- Finally, I know I post a lot of speculation, because I am a very lateral thinker and creative person, but I urge others to not get carried away with possible leads or rabbit holes. I also know as well as anyone else the sense of urgency and suffering that a chronic illness like mine imparts, and the degree to which it limits your life, and thus anyone who experiences such a thing will want to solve the problem; but get prepared for the possibility that you aren't going to find the answer any time soon. I cannot even begin to list, or even count, the number of false threads, red herrings, and meaningless leads I have chased over these last four-five years of trying to get better. Unfortunately, sometimes the pros just can't help us and we have to play doctor and patient advocate for ourselves. To that end, if you are going to play doctor and try to fix yourself, use critical thinking and apply a degree of emotional detachment like a real doctor should. You will probably fail to find solutions or your desired level, and quite possibly even fail a lot over a long time period. These setbacks and failures can be devastating and lead you to dark, hopeless, and hellish places if you let them do so.

 

 

 



#51 Mind_Paralysis

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Posted 22 January 2018 - 12:20 PM

Ok, glad to hear you're feeling at least a LITTLE bit better. = )

 

But... have you actually tried the following, yet?

 

Gabapentin (anticonvulsant, the 'mildest' such drug - proven to increase sleep quality - ask any of the avid phenibut users...)

 

Clonidine + Propranolol

 

Prazosin

 

 

Would be interesting to see what your response to these drugs would be. Another Polysomnograph sounds like an excellent idea! More data is always a good thing.

 

I'm having my first Sleep-EEG soon btw, which I'm kind of looking forward to, and kind of NOT looking forward to... being awake for 24 hours is going to be an absolute mother-f*cker.

 

 

 



#52 Dichotohmy

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Posted 22 January 2018 - 02:54 PM

Ok, glad to hear you're feeling at least a LITTLE bit better. = )

 

But... have you actually tried the following, yet?

 

Gabapentin (anticonvulsant, the 'mildest' such drug - proven to increase sleep quality - ask any of the avid phenibut users...)

 

Yes. For me, gabapentinoids - I've tried gabapentin, phenibut and baclofen - are very unreliable for enhancing sleep quality, and form rapid tolerance. Unfortunately, sometimes these things help with sleep quality, but often they do not and leave me feeling a little hungover when I wake up. If these reliably helped, I would rotate the three during the week to help mitigate tolerance building.

 

 

Clonidine + Propranolol

 

Yes. This combo works with a surprising synergism when I take it with methylphenidate or a tolerance-naive amount of caffeine. By that I mean that when I take clonidine with stimulants, it tends to make the undesirable peripheral stimulant effects worse - side effects such as dry mouth, hypertension, and undesirable hyperfocus just to name a few. When I take propranolol with stimulants, it helps with those peripheral side effects but only to a moderate degree. On the other hand, adding a little clonidine seems to strangely make the propranolol work better. I think this is a new worthwhile go to for me when I am going to use psychostimulants.

 

Unfortunately, for sleep, adding propranolol to clonidine still doesn't seem to alleviate that "sleeping on a stimulant" feeling I get from the clonidine.

 

 

Prazosin

 

Not yet, but its on the list.

 

 

I'm having my first Sleep-EEG soon btw, which I'm kind of looking forward to, and kind of NOT looking forward to... being awake for 24 hours is going to be an absolute mother-f*cker.

 

Polysomnograms suck when you have attention-deficit or other sensory gating or processing disorders. Its not just the fact that you have a bunch of wires attached to you, but also the fact that hospitals are noisy (bring ear plugs), the bed might not be that comfortable - as in my case, the bed was some sort of aero-bed contraption that inflated itself every 30 minutes or so, waking me up every time it did so until I told the technician to shut off the air. I would personally get used to going to bed at whatever time your polysomnogram starts, because if the sleep study starts at a time you aren't used to falling asleep, just being really tired might not be enough to ensure you fall asleep easy.

 

 

 



#53 Mind_Paralysis

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Posted 22 January 2018 - 04:29 PM

 

Yes. For me, gabapentinoids - I've tried gabapentin, phenibut and baclofen - are very unreliable for enhancing sleep quality, and form rapid tolerance. Unfortunately, sometimes these things help with sleep quality, but often they do not and leave me feeling a little hungover when I wake up. If these reliably helped, I would rotate the three during the week to help mitigate tolerance building.

 

 

Clonidine + Propranolol - Yes. This combo works with a surprising synergism when I take it with methylphenidate or a tolerance-naive amount of caffeine. By that I mean that when I take clonidine with stimulants, it tends to make the undesirable peripheral stimulant effects worse - side effects such as dry mouth, hypertension, and undesirable hyperfocus just to name a few. When I take propranolol with stimulants, it helps with those peripheral side effects but only to a moderate degree. On the other hand, adding a little clonidine seems to strangely make the propranolol work better. I think this is a new worthwhile go to for me when I am going to use psychostimulants.

 

Unfortunately, for sleep, adding propranolol to clonidine still doesn't seem to alleviate that "sleeping on a stimulant" feeling I get from the clonidine.

 

 

Prazosin - Not yet, but its on the list.

 

 

 

I'm having my first Sleep-EEG soon btw, which I'm kind of looking forward to, and kind of NOT looking forward to... being awake for 24 hours is going to be an absolute mother-f*cker.

 

Polysomnograms suck when you have attention-deficit or other sensory gating or processing disorders. Its not just the fact that you have a bunch of wires attached to you, but also the fact that hospitals are noisy (bring ear plugs), the bed might not be that comfortable - as in my case, the bed was some sort of aero-bed contraption that inflated itself every 30 minutes or so, waking me up every time it did so until I told the technician to shut off the air. I would personally get used to going to bed at whatever time your polysomnogram starts, because if the sleep study starts at a time you aren't used to falling asleep, just being really tired might not be enough to ensure you fall asleep easy.

 

 

Interesting that Clonidine + Propranolol helps with stimulant-use, but not with sleep... hmm. Give it another shot with Clonidine + Prazosin, if Prazosin on its own doesn't work.

 

Right, regarding my somnogram (I don't think it's a polysomnogram, because it only mentions EEG measurements, nothing more) it might be tricky then, because the neurologist, whom I admittedly kind of don't like (I find him to be an arse and completely ignorant regarding PLMD, how it can affect you, and how it's WORSE disease than RLS - he doesn't even think it exists!) have booked the EEG for 7:30 AM... That's usually not when I go to sleep... more like 23-00:00 hours. So, I'll have to be awake close to 24 hours before this reading.
 

I'll probably fall asleep though, since I'll be absolutely dead-tired. I'll try and get some physical exercise in on the preceding day, to get my body raring and ready to go to sleep-mode.



#54 zompy

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Posted 15 May 2018 - 01:19 PM

I came across this thread searching for an answer on my own tiredness troubles. TS: You might want to look into an Oura ring for improved sleep quality tracking, I am considering to buy one myself as well. Goodluck :) 


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#55 HighOrder

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Posted 12 August 2018 - 05:44 AM


P.S. I was feeling fine and ate 1 apple.  Within 5 minutes I the fog and fatigue began.  I still think this is linked to food in some way.  Lyme or otherwise.

 

I am not sure if this has been mentioned anywhere, but birch pollen allergies at times cross react with some proteins in apples, in form of an oral or food allergy.


I can second prazosin, it is fantastic. Also, some people recommend nabilone.

 

As for sleep, the best tracker I have used is Emfit QS. Expensive, but it is great.







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