I think you’re not the only one, @Chapman
I think we could probably all do with encouraging each other a bit more here. I agree that @Ozeph is doing a great job. If more people had documented things as well as he has done we’d probably have a much clearer idea of what is likely to help and hinder progress.
Thanks again for your efforts @Ozeph.
It’d be great if people reading these posts would contribute a little more often, we may well find that people are more likely to report their findings.
I read every post brother
Day 31: Thanks for your support guys. It does encourage me to keep going !
I lowered clonazepam again yesterday.
Day 28 I took 4 mg clonazepam.
Day 29 I took 3.5 mg clonazepam and 2.5 mg of the anti-histamine Hydroxyzine. That’s a quarter of a 10 mg pill (sold over the counter and 10 times cheaper then clonazepam), it’s a very low dose. I slept without waking up, or barely. Sleep quality was good.
Day 30: I took only 3 mg clonazepam and 2.5 mg hydroxyzine. I slept good again. 7.5/10. I wake up less groggy and although I’m waking up a bit during the night, I go right back to sleep and overall quality of sleep is good. I get productive days.
This means two things. First, that my doctor is an idiot. He prescribed a drug to treat seizures, panic disorder, and for a movement disorder known as akathisia. I have none of those. I did have anxiety linked to food allergies and aggravated by bad guts flora, and I fixed it by doing a ketogenic / carnivore diet and then using gelatin and probiotics.
I should not have gone over 5 gr. a day for gelatin. Anyone trying this should start with 1 gr., incrementing by 1 gr a day until reaching 5 gr, and stop at first sign of trouble. Look my The use of Collagen thread for this. It’s great to fix leaky gut that creates food allergies and aggravate auto-immune response, including against AR and Orexin producing neurons. Anxiety and insomnia can also be induced by an auto immune response to a food allergy. And I’m not talking about an obvious food allergy like someone taking peanut butter and getting swollen like a balloon before dying, I’m talking about all the food allergies that are more subtle and give you headaches or bloating for example.
So anyway, the side effect of clonazepam is somnolence. So the doctor basically prescribed it to me for the side effects. No wonder it doesn’t always work. I might as well go see a dentist to treat my pfs !!!
Second, It means my insomnia is the result of a condition called narcolepsy, which is a lack of Orexin generally caused in human by an auto immune response; the immune system killing the Orexin producing neurons. This condition is characterized by the inability to consolidate sleep during the night, transitioning frequently and rapidly between sleep and wakefulness (I call it a dreaming zombie state as it looks like I’m not sleeping, but I can tell I do because I have superficial dreams. I get no rest from this and the next day, i’ll be sleepy, tired, have brain fog and basically be incapacitated all day) . Narcolepsy is also characterized by the inability to consolidate wakefulness during the day which means feeling foggy, tired and sleepy all day, without being able to take a nap. Quick survey: Anyone had this before ? Do you recognize this ?
Narcolepsy is often accompanied (for 70% of people) by a condition known as known as cataplexy. It manifests itself as sudden muscular weakness, speech slur and vision impairment. Anyone recognize that in their symptoms ?
So I’m going to take the steps described above to achieve Three results regarding the lack of Orexin:
Meanwhile, considering the histamine complex is also instrumental in the wakefulness / sleepiness regulation, I will see how I can use anti-histamine to temporarily help with my insomnia until I can improve my lack of Orexin problem.
There is evidence my vagus nerve has been affected as well. Here as some symptom of the vagus nerve working improperly: fatigue, food sensitivities, anxiety, depression, gut problems, brain fog, depersonalization, gastric reflux, poor emptying of food from the stomach into the intestine, upper abdominal fullness, heartburn, nausea, burping, upper abdominal pain, bloating, Quick survey: Anyone had this before ? If you answer yes, which one ? I had three quarter of that, including all the digestive ones.
To promote my vagus nerve health, I’m going to do the following:
My vagus nerve seems to do pretty good after taking probiotics, 5-HTP, Choline, and the diet I’m doing. I’m listing this for the use of others and I will use those tips as back up whenever, I see symtoms of understimulated vagus nerves. Priority will go to Orexin because if i can get rid of insomnia, I’ll be 98% symptom free. That is not a cure, but I can be symptom free until time heals me and it’ll be just fine.
I though of starting a new thread on insomnia, but instead of splitting up into multiple subject, I will continue on this thread. insomnia is a neurological symptom after all.
As for the sexual symptoms, many of which seems to have to do with problems with the AR, auto immune response and what’s going on in the hypothalamus / Hypophysis. It is my opinion people should first take care of their neurological and autoimmune symptoms as fixing this increases things like sex drive, erections and sensibility.
I will continue posting on Amino Acids for Sexual Symptoms but not as frequently as on this thread.
I’ll keep you posted as always.
Day 32: I took 2.5 mg of clonazepam and a little more hydroxyzine, 4 mg. That’s less than half a pill of hydroxyzine. I woke up often, again I went back to sleep and I had a hard time getting up this morning. And hour later, I still feel quite groggy and sticky. (I feel like going straight back to bed but I have a long day of work ahead). It has to be because of the increased dose of hydroxyzine. Sleep quality was still good. So far, no sign of clonazepam withdrawal. Its a benzodiazepine, so Im lucky. Benzos can be hard to quit (like some of my ex-girl friends)
I will have to take no more than 2.5 mg of hydroxyzine along with whatever clonazepam will let me sleep. Tonight I will try 2.5 mg of each.
I’m waiting for Lactate and Pyruvate to prevent glucose from blocking the Orexin receptors. Once I have these, which may take a few weeks before I receive it from the US, Ill be able to try and lower those two drugs. Meanwhile, I get more reliable and better quality sleep on 3 mg clonazepam and 2.5 mg hydroxyzine than I did on 4 mg clonazepam alone, which was not reliable. Sometime it simply wouldnt work. Let`s see if I can achieve this on 2.5 mg / 2.5 mg.
Aside from this, I’m all fine. No anxiety, depression or lack of motivation. Procrastination is low.
Thanks to higher serotonin levels (Due to 5-HTP 100 mg 2 times a day), I’m more assertive (dominant) without being aggressive or irritable. Girls are noticing, I get physical behavior and attitude changes from them that shows arousal. Not that I care, I`m married anyway, but my wife has changed also. She let me lead and no longer try to boss me around as when I was on fin and weak.
This assertiveness also changes the dynamic at work. Being more dominant in a calm way works great with employees, suppliers and even customers. Next year should see my volume doubled or tripled, given the economy does not crash (which it’s very likely to do. But it may take more than a year before it affects my business). Thats a lot of stress for me as we are already at full capacity. If I can manage to do this without anxiety, panic attack and insomnia, I will have passed the test. A pfs guy under heavy stress that keeps everything under control without losing his calm. Id like to see that.
I`ll post any changes but so far, I seem to be pretty stabilized, although I have to take tons of supplements at very specific times, keep a tight diet and exercise regularly. It takes what it takes !
Day 33: 2.5 clonazepam and 2.5 of the anti-histamine hydroxyzine worked good enough. I don’t get knock out sleep, I toss and turn a bit but sleep quality is overall good enough.
I’m not too groggy in the morning (anti-histamine can do that) and altogether I managed to lower clonazepam from 4 mg to 2.5 mg without withdrawal symptoms (well, a little irritability yesterday, but it may be circumstantial and not related. My wife went out to party with her friends and left me with the three kids… on Christmas eve. I guess it’s an irritating situation).
I will stay at this level a day or two and check what happens if I take 2.0 / 2.5 mg of the 2 drugs.
I started being more serious on my workouts, and instead of doing maximum weight lifting and be sore for 2 days, I do less than maximum but more often. The end result is more workout at the end of the week.
Day 34: Unfortunately, 2.5 mg clonazepam and 2.5 mg hydroxyzine leaves me too groggy in the first hour, when I have to drive my kid at school. I will have to do 3.0 mg and lower hydroxyzine. I guess I have to crush the pill and use a scale, it’s hard to cut to 1/8 an already small pill.
I’ll try 50 mg of DHEA today. It boosts Orexin, as well as testosterone. Does also boost estrogen but I don’t have much fat to store it and I can metylate it and flush it with Choline.
I will have to wait for Lactate and pyruvate from the US to see if I can improve the Orexin complex functions. Orexin is by far the most significant stimulator of wakefulness. Histamine is also involved, but orexin activates the histamine system. This is why I’m taking anti-histamine, and the fact that a quarter pill makes me so groggy while it does nothing to my wife shows that I must not have much Orexin / Histamine to begin with. So suppressing just a little the histamine has a multiplied effect on me.
I will be blunt, but if after the crash I had a severe auto-immune response, as it appears to have been the case (considering I suddenly had food allergies, some of the Orexin neurons were attacked by the immune system and killed, and the androgen receptors have been attacked as well.) I would have to considered I have brain damage. I’ll try the lactate / pyruvate and will see if I still have enough Orexin producing neurons to boost them to a functional level, where I wouldn’t have to take sleeping drugs. We’ll see.
Two days ago, I took 5 gr of gelatin (collagen) before sleep and I slept somewhat better. Yesterday I didn’t. This may be why I had a more agitated night. I will take 5 gr. again tonight. It contains 1.5 gr of glycine. I will test if adding another 1 gr. of glycine helps.
Aside from that, I’m doing good during the day. I still feel irritable in the evening (and this time it’s not circumstantial). I think it’s L-Dopa. I took 350 mg in the morning and another 350 mg at noon. They’re too close together. I should take the second one around 3pm. That would give me an extra 3 hours before being irritable, and by then I would sleep.
Taking aminos saturated fat and proteins help alleviate the effects of pfs. But I become dependent on it.
Better that than being dependent on brain or hormonal drugs I guess. Life’s not easy. I don’t have to tell you that.
Update: Good news, Orexin producing neurons are not only in the hypothalamus (which cannot grow new ones if they’re killed) but also elsewhere in the body where new ones can be created.
Quote:“Previous reports have indicated that orexins are produced only in the lateral hypothalamic area, although orexin-containing nerve fibers were observed throughout the neuroaxis. Recent evidence shows that orexins and functional orexin receptors are found in the periphery. Vagal and spinal primary afferent neurons, enteric neurons, and endocrine cells in both the gut and pancreas display orexin- and orexin receptor-like immunoreactivity.” (https://academic.oup.com/edrv/article/23/1/1/2424066)
It gives me hope but again, it’s a warning against auto-immune response…
New experiment: After reading people talking about benefits from prep medication and valacyclovir (both antivirals), I’ve decided to take acyclovir 400 mg twice a day (total 800 mg).
I’ve had severe herpes 12 years ago and I have been on acyclovir 200 mg every day for those last 12 years to prevent a herpes reappearance… ( Acyclovir is an older, cheaper version of valacyclovir, with a much shorter half life).
I tolerate it very well, never had side effects, and I took way more than 800 mg per day when I was sick with herpes.
I just want to test if it does or does not do something about pfs. It’s kinda of free test, since I have it at home, I take it already and either nothing happens or I get somewhat better. Let’s see.
I don’t think prep is an antiviral it’s more of a reverse transcriptase Inhibitor (hope your med works for you, but don’t shut both down if it doesn’t)
Honestly, I don’t think acyclovir at 800 mg a day will do anything at all. But I’m going to try it anyway, in the spirit of leaving no stone unturned.
Agreed, as I said good luck, I’ll cover the prep side for you to see if Irish success is repeatable
Day 35: I will have to stop the anti-histamin. Yesterday I took 3 mg clonazepam and 2 crumbs of a 10mg hydroxyzine pill. Around 1 mg. I had bad sleep, was agitated all night and woke up so groggy I had a hard time bringing my son to school.
Obviously, anti-histamines are hitting me too hard. That means my histamine complex is weak (probably because it’s controlled by the Orexin complex which is weak too) and inhibiting the histamine receptors just a little has an exponential effect on me. I can’t imagine if I took a whole pill (or two) like a normal person, how many days it would take to recover.
Tonight, I’m cutting the anti-histamine and will take 3 mg of clonazepam, 125 mg of B3, a tiny shooter of magnesium chloride, 1000 mg of Glycine, 6000 mg of Glutamine and some freshly made cabbage juice (in the past, I had good results with that !)
Day 36: At last some good news ! Yesterday I cut the anti-histamine to zero, took 3mg of clonazepam, 125 mg of B3, 1000 mg of Glycine, 7000 mg of Glutamine before bed. I forgot the tiny shooter of magnesium chloride, I’ll take it tonight and I will also increase Glutamine to 10 gr and see what happens…
I also took a glass of freshly made cabbage juice around 8:15pm and it felt great on the stomach.
I had a good night of sleep, the best in recent days, and although I did wake up multiple time during the second half of the night, overall quality of sleep was good. I woke up without being overly groggy (clonazepam does that, but the anti-histamine were worst at that)
I’m on the right track. I’m waiting for more supplement (mainly Lactate and Pyruvate) to confirm the presence of narcolepsy. If I react well to those, than lack of Orexin is the reason for my insomnia. I also react badly to Melatonin which is an Orexin antagonist. This also seems to point at narcolepsy.
I believe pfs in an auto immune response that creates a multitude of separate pathologies: hypogonadism, narcolepsy and cataplexy being some of those but there are more.
Day 37: I took Choline before going to sleep and it disrupted my sleep. I would rate it 6.5/10, which will still get me through the day.
Also I forgot to drink cabbage juice in the evening. That’s what happens when you’re taking dozens of different things on a specific schedules. I forget things.
I consider everything I ingest in a day to be a “food supplement”. Even the steaks and kale. It’s all done for what it contains with no consideration for tastes or how I feel about eating the exact same two things on every meals for 4 months.
But on the educative side, I learned that taking Choline in the morning is not only stimulating, but helps the vagus nerve and the Orexin complex. I also learned that Inusitol (vitamin B8) can be taken before sleep and will improve relaxation. I now have them together in one pill, but will soon receive both separately in bulk powder format. Then I’ll be able to take them at the proper time.
Days are passing by and I’m relatively stable. The only thing that brings instability id the new supplements I’m testing and when I forget to take something.
It all seems extreme to take so many supplements I guess. But remember most of them can be found in food (in larger quantity than what I’m taking in many cases) and If I can manage to stay stable for a year or so, Then I can test and slowly reduce some of those in the hope that my body can keep it’s balance by itself just with diet and exercise.
I still have to address Narcolepsy (The lack of Orexin, a specific type of insomnia in which one wakes up and fall asleep dozens of time in a night, and feels sleepy all day without being able to take a nap). I’m hoping Lactate and Pyruvate will help. Time is on my side, I will create more Orexin producing neurons and cells as time goes.
As always, I’ll post my results.
Update: Acyclovir does nothing. I’m reverting back to 200 mg a day to prevent herpes from coming back, as I did before.
Day 38: Sleep keeps getting worst. I would rate last night at 4.5/10 at most. I took more Glutamine before sleep (7-8 gr.) and that’s about all I can see that changed.
However, considering it has been a constant decrease for a few weeks now, I have to consider it’s the long time effects of something I introduced weeks ago.
Also considering insomnia is my worst symptom by far, I will decrease and eventually stop what I’m taking for sexual symptoms.I will also reduce and eventually stop all the aminos and supplements that haven’t shown distinctive benefits. I’ll reduce what I’m not even sure makes me better.
The things I will add:
My calcium intake has been low in the last few weeks. When I was sleeping better, I used to eat a portion of cheese at dinner. Calcium being used in the transformation of serotonin into melatonin (along with Vitamin D and magnesium), I will increase calcium intake.
The things I will keep:
The keto / carnivore diet.
Coconut Oil
The exercise
The protein shakes.
5-HTP 100mg
Tyrosine 500mg
L-Dopa 350mg
Choline Inusitol 500mg each
Glutathione 250mg
Cabbage juice before sleep
The things I will reduce:
Pro-biotics (once a week)
Arginine suite (I’ll just take it less often.)
Valine (reduced to 1000mg)
Pine Pollen DMSO (reduced to half a pea size)
The things I will reduce and/or cut:
Glycine (reduced to 500mg, maybe cut)
Gelatin (reduced to 2.5gr maybe cut and only when not taking Glycine)
Glutamine (protein shake has some anyway)
Glucosamine
Pregnenolone
DHEA
Carnitine 1000mg
DLPA 1000mg
B3 125 mg before sleep. (I’ll take the daytime doses only)
I may reintroduced those later on, especially Valine, Carnitine and Pine Pollen, but I’ll do it one at a time and check if it’s good before adding another one.
Day 39: It changes nothing, it’s getting worst. Last night was 3/10, and I saved it from being 1/10 (which on my scale means no sleep at all) because I decided to take anti-histamine 2.5mg and an extra 0.5mg of clonazepam (total 4mg) after staring 6 hours at the ceiling .
I think It’s the elimination of agomelatin, the antidepressant I stopped 16 days ago. This drug is a non SSRI antidepressant that does not have symptoms of weight gain, sexual dysfunction, addiction or withdrawal. It improves sleep disorders and circadian rhythm disorders as it acts on melatonin receptors.
It takes 21 days to accumulate and have its full effect in the brain, and I assumed it would therefore takes a few weeks to get completely eliminated from the system. 16 days would do it I guess, which is where I am.
I stopped on day 23 and started complaining about increasing insomnia ever since. I also had anxiety the first few days after stopping, which I attributed to antibiotics (might have been, I don’t know) and it’s also the time I’ve introduced pro-androgen supplements.
So the rational thing to do now is to back track, stop the pro-androgen supplements and take agomelatin again. If sleep improves (within 21 days !) I may then re-introduced pro-androgen supplement and see if they interfere with sleep.
In the mean time, I will have to take anti-histamine and melatonin along with clonazepam to get some sleep. Not sleeping for 2-3 days completely incapacitate me. So it is primordial I get some sleep.
I will soon receive calcium Lactate and Pyruvate and will be able to confirm if there’s a problem with the Orexin complex.
If there isn’t, I will have to consider the problem lies with the melatonin complex and some other stress substances like cortisol, norepinephrine etc or the lack of the anti-stress ones like allopregnanolone, tetrahydrodeoxycorticosterone, Dopamine or the GABA-A receptors.
I’m getting tired of fooling around. If I can get back to 6 hours of deep sleep and 2 hours of tossing around but sleeping in between and then be fine during the day, (with clonazepam and agomelatin) I will normalize my regime and not change anything anymore. Being 90-95% symptom free is good enough. Then I will just let time pass and see if I get better.
Also, I have to wonder if I’m not just another case of “there you go, another one tried something, got better for a while and then crashed.” I would really hate to think this way. It’s fatalistic, as if nothing can be done.
There might not be a cure but there are ways to make our lives easier. So let’s see if I can get 6 hours of sleep again. Meanwhile, all other neurological and sexual symptoms have improved greatly, most of them having completely disappeared.
Once I have stabilized in a particular regime, I will post the details and discuss what I think of everything I tried, the good and the bad.
Day 40: I slept good last night. 7.5/10. 6 hours deep sleep, 2 hours of waking up but falling asleep again and I got up rested and alert, not overly groggy. I had a productive day without any symptom.
Yesterday I took 4mg clonazepam and 2.5mg hydroxyzine. I was suppose to go buy Agomelatin today, but I talked to a friend who told me he couldn’t sleep when taking 5-HTP twice a day. So I cut 5-HTP to once a day, and went on interment fasting (eating within a 6 hours window from noon to 6pm and fasting 18 hours a day).
I though I would give my body a chance before taking more drugs. Let’s see how it goes tonight.
I’m pleased to hear your sleep improved again, Ozeph.
I think it’s a good idea to have a break and see what you can attribute to your regime and to natural progression.
The ideal is of course that you wouldn’t need anything but if you can change your condition at will with your supplements then you will truly have found a treatment for yourself and a break would help identify that.
Thanks Greek
Yes indeed. I have simplified and reduced all I’m taking. Meanwhile, I found on a desk the clonazepam pills I was supposed to take the night I didn’t sleep…
It wasn’t a crash at all, I just didn’t take those addictive pills that night. To be honest, my short term memory isn’t great. I’m easily distracted.
As you know, benzodiazepine are not meant to be stopped abruptly. So on top of not having sleeping pills, I had withdrawal symptoms.
All considered, I think it wasn’t that bad. I mean I’ve read horrible things about people trying to stop benzos cold turkey.
Nonetheless, As you say It’s a great opportunity to take a break and see what I need and what I don’t.
I will concentrate on intermittent fasting (18 hours a day) , good diet and exercise instead of “magical amino powders”. (Although some are beneficial, I’m really taking too much for nothing…)
Hey Ozeph. Happy New Year! I havent been on here since 12/21 so it took me a while to catch up on all your posts. In regards to Narcolepsy and Orexin. For some reason, my understanding of the 2 is backwards from what your posts are saying.
I “thought” narcolepsy is when people randomly fall asleep during the day. Pretty much fall out of their seats and instantly sleep for several minutes or hours. I also believe that the drug for treating this is Xyrem (GHB) which is highly controlled in the US and pretty much impossible to get. There was a guy on here who cured his insomnia by taking Xyrem at night. You take it, it knocks you completely out and then you wake up 4 hours later and take it again. I think he did this for 3 months and it cured his insomnia.
Also, Orexin, as I “thought” I understood it was the neurotransmitter that wakes you up in the morning. Balsomra is an Orexin inhibitor. So if you are targeting Orexin in an effort to increase Orexin, you could be making your insomnia worse.
Once again… I may have this all wrong but thought I would chime in.
I’m also curious… the drug that you have been taking for the Herpes… does it have any known side effects or interactions which could create or aggravate insomnia?
Hi Shellnyce, Happy New Year to you too.
No it doesn’t. I’ve increased it and stopped it without any difference.
Orexin mostly support wakefulness but also plays a role in regulating circadian rhythm. I will test Lactate and pyruvate (in the morning) and see what happens. Anyway, Orexin receptors are blocked by glucose and I don’t consume carbs. So We’ll see.
In the past, after crashing, I may have had narcolepsy as I was sleepy all day and waking up all night. I also had cataplexy as I would suddenly have muscle weakness that wouldn’t last. Most of that is fixed now.