The scientific evidence is on our side so good luck Merck. They wouldn’t stand a chance in suing anyone. I tell everyone what they are. Im aware it distracts from moving forward but living with anxiety around the clock brings out the wrong mindset. Your emotional state tells the story how you behave. Unfortunately it’s a sad fact of pfs. For those that have that side as a permanent unshakable concrete suit. Without that we are free, objective, able to make level based decisions like Sylvianne. Prior to PFS I sat above everything and never got drawn into arguments etc. No it rules my life. I’ve tried everything to master it. Unfortunately a better balance/increase in neurosteroids is the only way in my situation. Regardless I’ll always try to further the cause.
I recommend trying first principles.
I got severe insomnia under Finasteride. I wasn’t aware of the connection and started taking mirtazapine as I thought it would be the only sleep aid that doesn’t make dependent.
My real PFS hell started when I tapered both meds. And once I stopped mirtazapine I only slept 1 hour for 6 weeks, then up to 3 hours for another 9 months, and it took me more than a year to get to 4-5 hours. Under 3 hours I was in constant brainfog, pain and suffering. It was unbearable. I was a very, very, very bad case.
By coincidence I noticed that wine and hard alcohol would not make me drunk, but 1 single beer would have positive effects on sudden brain fog. So I thought maybe it’s not the alcohol. Then I started experimenting with alcohol free beer and it was a life changer for me. I started taking 1g arginine and 1 bottle of alc free beer every night 45 mins before sleeping. I got from 4 hours of sleep to 5, then to 6. Now I sleep 5-7 good hours every day. During the last 5 months I started to recover slowly on multiple symptom levels. A few more important things for recovering were 1 hour of HIIT and weightlifting every morning and complete abstinence from coffer one containing drinks. Now my life is bearable again. I still have many symptoms, but they cannot hold me back from commanding my life anymore.
Be careful with mirtazapine. There are several PSSD cases in the PSSD community who got PSSD from mirtazapine.
I take a quarter zolpidem or hogar night (changing all the time to reduce dependance) 1-2 a week if I can’t fall asleep or if I feel the need to sleep through. But if I take more thana quarter or take it too often it puts me in a state of anesthesia rather than sleep.
Arginin + alc free beer did more than anything for me. Note: the first weeks I slept better but felt constantly tired, moody she had headaches. That went by after a few weeks, especially when I started intensive sports.
What’s in the alc free beer that helps? Glad to hear it made a difference
Probably due to 2-methyl-3-butenol. It’s a GABA-ergic substance
There is also this newer study from 2020 that shows that the hop compound 6-prenylnaringenin has a dual effect on GABA receptors.
https://www.sciencedirect.com/science/article/pii/S0014299920300546
What I found weird was that just alcohol free beer alone or just arginine alone before sleep didn’t had the same effect and that the effect even improved over the months. Now I it doesn’t sedate me, but the sleep quality is really good. Something I would have dreamt of 1.5 years ago when I just slept 1 hour a day.
Thats great news for you.
Interesting to hear about the Arginine and the non alcoholic beer too… I have used Arginine a while back, Im thinking of using it again for the NO effect.
That sleep pattern sounds all too familiar…Its got to the point where I have felt how can a human being realistically survive on sleep function like this much longer, but if you have been there for that length of time and are doing better there’s still hope.
The grim thing is I had been doing better too for 5 months and then a sudden relapse. but it is what it is…im doing the HIIT too and I alternate days on those with 1 day of rest a week.
Currently also practicing spiritual discipline of prayer/meditation a day and also working on my voice, music and songwriting …kind of not giving in and fighting on to be the person I am.
I think im gonna avoid any pharmaceutical stuff if poss, just finish off the Zopiclone this week and then think I will switch to Magnesium and CBD oil at night. I have noticed before Magnesium a couple of hours before bed makes me feel tired…but my main problem is insomnia onset and in the past CBD oil has helped me actually fall asleep so im hoping the combination will be fairly safe and I can switch over to those two protocols.
Grim stuff man, hearing about your story, seeing where I am now too and where I was before. I guess thats pretty much everyone on this forum who’s still struggling though
I hear ya mate…I have recently tried Pregabalin over the last month and although it makes the day after a night of no sleep bearable and also knocks out my chronic tension headaches it has barely done anything for the sleep - which surprises me.
Im trying to take as minimal stuff as poss, just finish off my zopiclone and then might switch over to some herbal stuff for a bit and see how that goes.
I have sexual side effects too of poor libido and soft erections, but for me the insomnia is so extreme and I find the most devastating. Thats the main thing I want healed now.
The gynocoimastia has been pretty much healed so thats a positive, now my focus is on sleep dysfunction.
Thats interesting what you say here about the memories of family home! thats a really good technique and its one I have been thinking about a lot.
Since I moved back from the USA last year, where im staying now is about 1 mile away from the flat I grew up in as a boy.
With all this lockdown stuff I have just been going out for daily walks, no where in particular I just wander the streets with Spotify on and walk down random roads really and I have walked down this road a lot where I used to live. Nostalgia is a real powerful one for me anyways, but it has helped stir emotions for sure which I think is a good thing. Was able to feel things again a few times I have walked past…
I hear you on the neuro too, the less drugs is the better.
Thanks for your help as always mate!
@Forwardsnotbackwards good to hear. A few years back things like a slice of turkey, cherries or a hanful of lettuce leaves 30 mins before bed used to help me sleep. Great you’re getting out for a walk, try new routes, approach old haunts from a different direction. It stimulates new thoughts or different memories. You’re welcome and good luck mate
thanks man - I will continue. ITs been the only good thing from being locked down really, being able to approach old haunts and roads I have never walked down…all within the soundtrack of Tears for Fears first 3 albums!! 
perfect!
Is life better in the USA?, Having PFS makes us feel like
“it’s a mad world”
Merck are like most corporates
“Every on wants to rule the world”
When I had libido a decade ago I would think of
“Women in chains”
now there’s nowhere to hide everywhere feels like a
“Pale shelter”
It just makes me want to
“Shout”
A few tears for fears titles there, a rare moment of humour . They’re a proper decent 80s band.
Haha ! You have picked out some of my favorite all time songs by them right there !!
I think Pale Shelter is my fave song sung by Curt and Woman in Chains is my favorite sung by Roland .
I think they both sing Shout and Everybody wants to rule the world together for the most part ( plus sometimes they sound very similar to each other …)
Awesome band mate glad you’re a fellow fan ! I wanted to see them tour with Hall and Oates a few years ago but never got to go 
Scientific evidence is not really on our side. The studies so far conducted are not enough for a proof. I have close contact to the German lawsuits against Merck. The leading case was rejected by the highest court. That means the other once will probably fail too. Let’s not invest to much thoughts on revenge, but rather on how to get PFS being researched and eventually cured. There is a lack of taking responsibility here in this community. Everyone expects Merck, PH, the foundation to solve PFS, but that’s not how it works.
Woman in chains is my fav of theres. I saw their 2016 concert in catch up and they were very good.
Its unbelievable that the lead case was thrown out. FFS. When everything I had has been taken away by a cancer drug that was and is marketed for cosmetic purposes is very hard to swallow… Seeing someone pay for what they’ve done to me. “20 years in” and others is hard to walk away from/close the door on mentally. Those that have seen improvements find it much easier. I would gladly donate money to research but still don’t see any facilities taking this forward. I don’t have scientific contacts in order to get this underway which is why I’ve approached the press in the hope that it hits the letter box of someone who does
Donation is just one way to help. There are so many more things that we can do.
We have to get organized as patient community first
We do as a collective unit
@NomisB just listened to the podcast. Great job. It stuck towards the end so I couldn’t listen to the last 5 mins. Its continually returning to the start so can’t fast forward to that part. I expects it’s your words of unity and propsed way forward as a group? I’ll find time to listen to it again when I’ll hopefully get the full interview. Well done 
Yes, my message is not to wait for a cure to magically happen, but to unite and take the action that is needed to get closer to a treatment. The longer people wait the longer it will take until they feel well again.
If you have problems listening to it on Spotify you can also listen it here: https://medicalerrorinterviews.podbean.com/