I Might Stop Sleeping Permanently From PFS and Die

hang in there

have you tried taking melatonin and some sleeping syrup from walmart?

i used to have to rely on that to sleep when i was real bad

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How is your sleep these last days, friends ?

No sleep again last night. Wonā€™t put up with any of this much longer. Itā€™s not worth it.

@slavoushka thanks for asking, according to my Fitbit REM was around 20 mins a night but thatā€™s gone up to an hour the past few nights. I need another few weeks to see if my sleep has recovered from the recent crashes.

@jrums01 sorry to hear buddy. If youā€™re not already try logging sleep with a Fitbit watch. I have felt much more tired before sleep the last few days. Anxiety and depression has improved this week which maybe why Iā€™m sleeping better the past 3 days. Try ACV about 3 hours before bed with a probiotic this is really good for sleep. I donā€™t take it every day in case I build up a tolerance and it stops working.

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The crazy thing is I have no anxiety, or any other emotion, keeping me up. I know PFS guys tend to present more with depression and anxiety, where as a lot of PSSD guys tend to have all emotions, including anxiety, wiped out. Yet insomnia is common in both. It doesnā€™t seem to fit together. No anxiety yet no sleep. I just lay there like like a brainless, emotionless robot. GABA receptor likely fucked somehow in both conditions. Maybe just in different ways.
I will keep trying shit but this has all got to end eventually. Being awake AT ALL in this emotionless zombie state is torture. Iā€™m looking really looking forward to death and eternal nothingness. Just wish family would understand this.

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Have you tried working out?

Thereā€™s must be some kind of doctor you can see, even if they have give you some strong meds to put you asleep, it might be worth taking at this point.

There are two men on medical records who stopped sleeping completely after brain injuries. They went on for years without sleeping and died of other cause than lack of sleep.

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I was taking clonazepam 5 mg a night, along with melatonin and hydroxyzine.

I managed to lower to 3.25 mg the Clonazepam, using Gabapentin to prevent the withdrawal symptoms (It works but can get you brain damage. I wonā€™t do it again nor do I suggest doing it) and 12.5 mg hydroxyzine.

Aside from those two drugs, I take the following plant extracts: 800 mg Valerian, Lemon Balm 400 mg, Passion flower 400 mg, Hops 400 mg. Some nights I replace 400 mg of Valerian with 80 mg of Silexan (lavender oil).

My Fitbit gives me, for 9 hours in bed, 1:30 hours awake, 40 minutes REM, 5:30 hours light sleep and 1:20 deep sleep.

This is 16 months after crashing. After my crash, I was having zero sleep and Iā€™ve had increasing insomnia in the last 5 years before stopping fin.

Iā€™ve been on a zero carbs diet for 15 months, replacing carbs with lots of fat and meat. Carbs increase Cortisol while the diet Iā€™m doing increases GABA and Beta HydroxyButyrate .

Iā€™m taking steps to increase both Butyrate and Beta HydroxyButyrate as they may reduce epigenetic damage. This is not proven, but thereā€™s two of us on this forum that did this. Iā€™m almost symptom free and the other claims to be cured.

I also take inulin and probiotic supplements as they increase Butyrate.

I anyone is interested, I have a list of things that can be done to decrease Glutamate and Cortisol and increase GABA.

I am now fasting 25-30 hours every week, on top of the restrictive diet, and instead of the drugs having less effects, they seem to hit me harder. I believe I will have to reduce dosage sometime in the future.

Granted, I take a large amount of drugs and supplements for sleeping, but if I donā€™t sleep many pfs symptoms come back and I canā€™t be productive at all. I took the lesser of two evils and decided to kick the can down the road. For 1 year, I was afraid I would become tolerant to the drugs faster than I could heal, and thatā€™s what happened first until I introduced fasting.

I believe I will actually avoid becoming tolerant and Iā€™m hoping to sleep drug free sometime in the future, in my opinion because of the zero carbs restrictive diet ( I eat about 10 things) and fasting. I canā€™t predict how much time it will take, or if it will happen at all, but I have good hope. I already had much progress, insomnia is my last significant symptom.

So my advise: donā€™t give up hope, but also donā€™t expect different results if youā€™re doing the same thing. The extreme and radical diet and fasting regimen Iā€™m doing may not be responsible for me getting better, but they sure coincide and by the way, I did a Success Story compilation thread and many of those stories include zero or very low carbs diet and fasting.

I wish the best to you all.

Ozeph

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Please consider creating a short story of what Fin has done to you and post it on all the websites/forums that you visit. Maybe you can say it is someone you know if you feel uncomfortable People need to know what is happening. Merck wants us to die quietly and say nothing. Merck claims the drug affects 1-2% of men but that number could be much higher. If they covered up the research then how big is PFS? We could be looking at anything between 100,000 to 1 million men with symptoms of PFS. If all those people knew things would be very different and medical researchers would want to study our condition, it could be a career making study.

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He got it from ssri.

Thanks @AnhedonicApe and anyone else reading this but same thing we are the tip of a bigger problem. If we tell our stories whether that be SSRIs it will help others and grow our cause. Once we have told our story here I believe we should be doing the same elsewhere. Instead we become this contained group by our own choosing.
If we look at Religion leaders and followers go out into the wider community to attract new people. In the Bible Jesus travelled from place to place with his disciples to preach the word of God. Maybe others here from different religious backgrounds have examples of their own.

Finding this forum seems like the end of our journey when it should be the beginning. Sorry to go on but this is for everyone. This idea of staying within a group sharing our problems hasnā€™t worked. We are still small in number and our cause is not heard and easily ignored by the medical community. Only when people step out of the circle do things get done.

Most are sat around like surfers waiting on their boards for that one big wave instead of going elsewhere and finding that wave for themselves. We are creatures of habit. Our brains have become used to coming to a forum and canā€™t see beyond that. We have programmed ourselves to think like this.

We need to change old thinking and make new habits for the sake of our futures.

So you canā€™t fall asleep or canā€™t stay asleep?

You could rent a neuro optimal unit to correct your sleep. See the YouTube review. Iā€™m still to sensitive to try this right now. Neurofeedback gets to the root of the problem

Canā€™t fall asleep. At least not naturally. I have to take massive amount of meds after days of night sleeping. When I say massive I mean massive. Some nights they work and I get maybe 7 hours, though a normal person would be knocked out for at least a day. Sometimes I wake up after a few hours and canā€™t fall back asleep. And sometimes they donā€™t work at all. Neurologist says there just arenā€™t many as many GABA receptors and the ones that are there arenā€™t regenerating properly
But natural sleep has become nearly impossible. After a few days I sometimes lie there and wake-dream,meaning I am half awake and aware of my body but watching my dreams. Thereā€™s a medical name for it but I forget what it is. Itā€™s bizarre.
Probably gonna run out of sleeping pills soon so no sleep this week. Maybe some wake-dreaming. Just hell.

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Iā€™ve tried and do take things some days. Ambien, Valium, Lyrica, Baclofen, Indica THC. Sometimes all at the same time. And sometimes even that doesnā€™t work. Just not enough GABA receptors to receive it. Only thing left to try and get is Xyrem. Have a meeting with another sleep doctor who prescribes Xyrem. Weā€™ll see.
Natural sleep is near impossible. I tried to give it time but it wasnā€™t happening. Just occasional stage 1 wake-dreaming.

Iā€™ll check it. I tried everything, like all supplements, but was forced to the strong meds. And even they donā€™t work many nights. So hard to skip nights being awake with no emotions but have no choice. But itā€™s getting so Iā€™m lucky to get any sleep a couple nights a week. Nothing natural of course.

How does your neurologist know the quantity and quality of your gaba receptor?

I also do the wake-dream thing for about 1.5 years now. Itā€™s the only way I sleep, never normal or deep.

Just saying thatā€™s the likely culprit with the way the way the meds that hit the GABA-A receptor stop working so quickly. And the fact that some of the amounts I took could knock a rhino out and I just lie there awake sometimes. Also the fact that I never get tired. Same way sheā€™s quite sure dopamine receptors arenā€™t working (no emotions or reward system) and because I have no response to meds that increase dopamine. Same with other neurotransmitters (dry mouth, foggy memory is acetylcholine for example).
Like how guys with this condition have normal blood testosterone or some take testosterone and it has no effect. Itā€™s likely a receptor issue. Or the gene that controls these receptors. In addition to likely other things going on as well.

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Iā€™m creepy. I canā€™t sleep satisfactorily after getting pfs and I have meaningless dreams every day

I also have no emotions and think our dopamine receptors are fucked. I took mucuna pruriens but there was no effect for me.