How long have you been suffering and did you have a crash? Do you sleep?
Has anybody here crashed after being 95/100 percent recovered for 10 years or more?
The insomnia I am dealing with even at 7 months is destroying me - I am having to take trazadone, gabapentin, Benzos, z drugs even in combination just to get 5 hours sleep
The oils in my body are white chalk flakes
I barely sweat but when I sweat the odour is like a palliative care unit or care home for the elderly
If I don’t sleep I am emotionally blunted and anhedonic
Exercise makes me feel terrible for some time - brain fog, itching and hit chest and nipples, general malaise
I did not react well to testosterone or HCG
Dutasteride did not induce a window like it did back when I had PFS before
If anyone is out there with same symptoms please DM me
I am waiting for a miracle so that I can heal again
Oh my god. I’m sorry to hear that.
I too suffer from severe insomnia. For over two years, I’ve only been able to sleep 0 to 3 hours a day. It’s hard to believe. It’s an immense suffering.
Certainly, there are reports of recovery from temporary insomnia after a crash. Unfortunately, however, I haven’t been able to find any reports of recovery from long-term insomnia. I’m truly disheartened by this.
So I can understand very well your feeling that death is the only option.
If anyone has a story of recovery from long-term insomnia, I would be grateful if you could share it with us.
For myself, at least for now, rather than suicide, I’m focusing on doing whatever I can before my strength inevitably runs out. Specifically, reading books which I want to read.
p.s.
In my opinion, we should not use any drug. The only thing we can do to recover from a brain system that has been distorted by epigenetic modification is to endure and wait for the distortions to be corrected over time. Any medication will only make the situation worse. Be patient. Be patient. Be patient.
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I have to use various drugs to sleep but continually attempt to taper off them
Trazadone
Mirtazipine
Zolpidem
Gabapentin
Valium
I made it 2 weeks without using drugs but began to go senile
I have two children to care for
I don’t know if you consider it long term insomnia, but I suffered for quite some time and recovered mostly. I still have trouble sleeping during periods, but nothing like before. I was getting less than 10 hours of sleep per week for like 6 months, like 1-2 hours every 2 or 3 days. This slowly progressed into 2-3 hours per day for next 6 months, then 4-5 for the next 6 months, then 5+. I am over 4 years out now and get 6 at worst, sometimes 8 or even more. Not fully recovered, but mostly.
Mine was a very slow but steady progression over time though. I was not stuck at the same level for years.
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Hi my friend
I’ve followed your posts since I crashed this March
You Ozeph and a couple of others have inspired me at my lowest
It’s fascinating the way you’ve been recovering - I can see that you semi regularly have significant short term crashes with almost full blown PFS body wide issues
My biggest concern for me is that this was my second crash - being healed of PFS for over 10 years and crashing again but this time much much worse is terrifying
Thank you for getting in touch, please DM me if you can - I don’t seem to have the option
Yes, Ozeph was a key part of my support group during my recovery also. I figure the best way to thank him is to do the same for others. I really resonated with Captains story too, his ups and downs. I could feel and share his torment. Chi also, his story gave me hope. I read them all so many times.
I’ll DM you after this, and anyone reading this can DM me anytime. I’m no miracle worker, I don’t claim to have any answers, but most people just want me to share my experience and discuss. I’m more than willing to do that.
When you get better, that’s all I would ask of anybody else. Be a positive force in the community and help others. I know it’s tough with PFS, but those of us that are capable should do so.
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