Can’t sleep, need some advice

Symptoms Neurological
#1

Fellow PFS sufferers,

I am an early sufferer. I am a little over 3 months in. My first month was complete hell. With my symptoms being highly neurological, and I had it bad. Depression, thoughts, sense of doom, anxiety, and insomnia. I also had muscle twitches and loss of libido and other more minor ones as well.

After that I almost fully recovered for about one week, followed by a 1 week crash. I then recovered even more for a period of about 3 weeks. I then had multiple subsequent crashes where my insomnia got worse each time.

I am currently in week 4-5 of the overall crash. I believe my only remaining symptoms to be waves of anxiety and severe insomnia. The insomnia is debilitating, but has gone up and down throughout the crash. 9 days ago I finally had a string of decent sleep. I had two days of 7 hours, followed by two days of heavily interrupted sleep but overall think I got between 4-6 hours those days. The days of 7 hour sleep I even got a block of 4 hours straight which is the longest block I’ve had outside of the “recovered weeks”. The last five days have been mostly no sleep, or very light 1-3 hours max. Other days within the crash mostly top out at 4-5 hours very interrupted but more often 3 or less or none.

I’m struggling heavily today. I’ve been prescribed 0.5mg clonazepam, but am terrified to take it. Is there anyone that has gone through bouts of insomnia like this that can make recommendations?

Do my sleep patterns indicate I may be headed towards more recovery? Should I hold out for longer? Is there something else I should take to help me get sleep? Is clonazepam generally safe for other members? Is there anything else for sleep that is generally well tolerated by PFS sufferers?

I’ve tried glycine and 3mg melatonin which is what initially helped me get the 7 hours but has since obviously lost it’s effectiveness if it was ever there. I also tried MG which did not seem to help much.

#2

Right now I have lost all zest for life. I do not enjoy anything, it is just a drudge until tonight when I get my next try at sleep.

When I get do get good sleep though (5+ hours solid), it seems that this goes away and I get enjoyment back of things I love. At the start it was easier to go without sleep, even when I didn’t get sleep I wasn’t really tired. However, it is becoming harder and harder. I get extremely tired now and feel like crap, can’t focus, but for the most part still cannot sleep. Again, if I get a good nights sleep, this all seems to go away. Or at least it has been so far.

Anybody else have this type of relationship with their sleep/insomnia?

#3

I relate so much to your sleeping pattern.

I won’t not touch the benzo, that shit is great short term but it will fuck you up long term.

I now managed to get good sleep lately. At least 7+ hours.

What helped me initially was:

Melatonin 300mcg (0.3mg).
Magnesium bisglycine or taurate 2-300mg.
Taurin 4-5g.
Glycine 4-5g.
30 min cardio 5 days a week with 130-150 avg heart rate.
Get out of bed a set time every day, preferably 6-7 AM, and try to get sun into your eyes in the morning.

Something just clicked for me after some months of this daily and now I can sleep without any supplements.

#4

Thank you so much for the reply! This gives me hope.

What time did you take your supplements? I have Magnesium Bisglycinate, Glycine, and both 3mg time release melatonin and 1mg short acting currently I’ve been taking. Seems like I’m only missing the Taurine.

I exercise daily, fairly intense running and sometimes weight lifting. Always run at least two miles everyday.

You said it took a few months for this protocol to click, was the progress gradual? Or you just suddenly were able to sleep again?

#5

Yeah I would say it was gradual. I was sleeping maybe 1 day each week then 2 etc. I took all supplements just before I brushed my teeth. I also used L-theanine 400mg I forgot to add it.

Then one day I just fel tired without even taking anything. It was really nice, because not being able to sleep is the fucking worst symptom!

Taking to much melatonin some people actually sleep worse, that’s why I was taking only 300mcg (0.3mg).

Also I stopped using coffee during the period I slept bad, might have contributed.

Now a days I can sleep good even if I consume 1-2 cups of coffee before 1 PM.

#6

Decaffeinated green tea has helped me sleep.

#7

Hi @Henchman21

Sorry to hear that you’re not doing well. I think anyone here who experiences it can agree that insomnia is one of the worst symptoms.

If you’re in the worst of it, the patient record on this forum suggests that benzos are one of the very few substances that will not put you at risk of worsening. I used them during my crash and they helped enormously just getting to sleep so I wasn’t awake 24/7. As @Cbrandel noted, they do have potential long-term consequences, so please be careful with overuse.

If you’re having good days when you sleep, that is a good sign.

My sleep has improved over the years, but it’s still never refreshing. I am able to sleep 3-4 hours straight, followed by 4-6 hours of light sleep where I am woken up very easily.

Lastly, I see you’ve already created a member story, but once you’ve been off the drug for 3 months please complete the patient survey and follow the other actions here: New user? START HERE

It’s very important that patients at least report their symptoms to their regulator, as this is an important cog in increasing clinical awareness and ultimately research.

Take care,
Mitch

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#8

@Henchman21 be mindful benzos aren’t without risk. I tried them three years ago and they aggravated my already wide ranging symptoms. It took weeks for me to return to baseline. NO drugs are safe with this condition mindfulness and meditation help with sleep and are 100% safe.

#9

Thanks everyone for your input. I’m past the 3 month mark now so I will fill out the survey. As an update, my patience was rewarded and after a week of no sleep (a 6 week’s of piss poor sleep) I got solid sleep for two night’s running. I started having hot flashes for a few days and after that passed my appetite returned and the sleep came with it.

I only made a few changes in this timeframe, unsure if they are related in any way. I stopped putting collagen powder in my morning smoothie, i stopped all my supplements and was planning to slowly add them back one at a time. I started taking 200mg magnesium bisglycinate in the evenings after dinner first. I reduced my melatonin intake at Cbrandel’s suggestion to 0.5mg.

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#10

People keep mentioning baseline, will I eventually stabilize to a baseline? I’m so up and down right now. How long until I can relatively safely not be afraid of new symptoms?

I’m just over 3 months now and I have now had 5 nights of 7 hour sleep, but this past night I only had 4-5 which is still decent. My anxiety is all over the place and only will occasionally completely subside, although rarely right now. Maybe once every few days. Everything was linked to my sleep but now seems to not be 100% connected. Even when I sleep good now it’s no guarantee my anxiety will be low, or I will get enjoyment out of the things I used to. This also seems to come back fleetingly.

I’m still holding out hope for a natural recovery to my neurological symptoms. Is this still a possibility considering where I am at 3 months? The Gluten-free/paleo diet I’m on that I see everyone with, is this something permanent for most to avoid symptoms? Will symptoms return full force if I stop my diet? (Insomnia, anxiety, depression/lack of enjoyment)?

#11

Three months is still early and there’s plenty of room for improvement. Depending on the severity of your condition a full recovery to pre-crash state isn’t considered likely amongst true PFS patients but it’s certainly possibly to recoup a decent degree of health and curtail a number of your symptoms.

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#12

Thanks, I guess then my question would be “considering where I’m at, Is it possible at this point that I’m not a “true PFS” patient?”

I guess I don’t really know what defines a PFS patient. I just matched up my symptoms very early on with PFS right after stopping finasteride on this website. How do you know when it’s officially PFS?

#13

It’s hard to say mate. We usually say wait until the 3 month mark before taking the survey so the fact you’re there now could unfortunately indicate that you’re a patient. However, this is not an exact science.

Anyone who’s experiencing persistent symptoms, no matter how mild or severe, upon cessation of finasteride that do not fully alleviate over time is a PFS patient. Some cases are more severe than others but if you’re experiencing persistent symptoms that would not have otherwise manifested had you not taken finasteride then you’re a PFS patient.

#14

Thanks @SkinDiesel. I guess I’m here with the rest of you then. At least for the time being.

I just had a great streak of 7 days where I mostly got 7 hours with 2 days of a little less 5-6 hours. Always at least one awakening around 1-4AM and worst case after this awakening, I slept in like multiple broken 30min - 1hr sessions until 7AM. Only one day I woke up at like 3AM and couldn’t go back to sleep. I had to wake up early that day, so I’m chalking that one up to stress of watching the clock.

However last night I went basically back to zero. I did sleep some because I remember two dreams, but it couldn’t have been for long and it didn’t feel
Like I slept at all.

I tried stopping the magnesium for 2 days now which may have something to do with it. I’ll restart that, but do any of you know of any other triggers I should watch for that might have caused me to go back to zero? I did have a massive attack of anxiety yesterday afternoon that I hadn’t had in a while. Not sure what triggered that, but I exercised heavily when it hit me and it mostly went away before the evening. This is just my way of dealing with the anxiety attacks.

Just trying to figure out the puzzle of what causes my sleep to crash. Any ideas? Or do you all think it’s just random for now as my body continues to figure this thing out?

#15

I can only talk for myself but I had issue with sleep for almost 2 years. Much like you my sleep was very variable.

But after I managed to get it under control with some supplements and lifestyle changes I can now say I sleep good 9/10 nights. Without any supplements.

As for things that can still ruin my sleep, there are two things I’ve noticed.

  1. Working out close to bed.
  2. Drinking to much coffee (easy to do after a bad night’s sleep, which will ruin the next night etc.)
#16

As other users have pointed out sleep quality is extremely variable and in my personal experience is extremely sensitive to disruption. You’re still very early so the fact you’re struggling with sleep is definitely to be expected with PFS.

My sleep didn’t begin to normalise until well over a year later and I know that’s the case for numerous other patients. The only advice I can give is to wait it out and be extremely careful with what you take as you’ll risk making things worse. Given your current state isn’t too severe it seems like you’re a good candidate for hopefully making natural improvements over time.

#17

I’m on 2 years and I still get random nights of zero hours out of nowhere…it’s a bummer but it usually settles down the next night and it’s back to 6-7 hours , whereas back in the early days it would linger and you could get 2 nights in a row of zero.

It’s always pissed me off that I seem to suffer with sleep issues more than others , but then I have been lucky and don’t have brain fog that bad .
I’m interested to find out what has caused the insomnia ….it’s probably something to do with gaba a receptors .

#18

@Forwardsnotbackwards Do you take anything for sleep? Or do you get 6-7 hours now naturally?

Did you do anything special to get to that point? Or just recovery over time? And how long did it take you to get to where you are now?

#19

bb536 probiotics and hydroxyzine are helping me sleep

dont know if it will work for you, not endorsing it for you to try either

#20

Haha I must stop commenting on these posts - as soon as I mention that I’m doing well on here I suddenly get insomnia relapses ! :sob::rofl:

Mirtazapine 15mg is what I take right now , been taking it since end of April and it has helped a lot . I also used magnesium glycinate earlier in the year for 2 months and this helped also .

Bizarrely for a 4 month period last year I was able to fall asleep naturally for 5-6 hours without using anything . Not sure why that was but it gave me hope that the potential is there for the future ….

Unfortunately the past 3 nights I have had 0-2 hours each night , not sure why this has happened. I’m now approaching 2 years so I expected to be over this sleep issues now . Not sure what causes the relapses out of nowhere….maybe the response to stress isn’t normal anymore , so the slightest thing can disrupt the sleep ??? Clueless !