Severe Insomnia and Sleep issues

I’m at the stage where I can’t take much more . I had severe insomnia after initially stopping finasteride and used Eszopiclone every single night for 3 months (averaged between 4-6 hours a night on it).
In Jan 2020 I started tapering off and went down from Eszopiclone very slowly by March 2020 I was off of it and could sleep on just Melatonin or Valerian root for about 6 hours . This went on for 6-7 weeks and I thought I was over the sleep issue finally . The last 4 weeks it has come back and it’s now at the point where it’s as bad as where I initially quit the drug . A good night is 4 hours , most nights are about 2-3 hours of crappy broken sleep and about once a week I get zero hours and lay there all damn night .
I spoke to a doctor over the phone and he referred me to a sleep disorder clinic - but they are not accepting patients right now because of covid . He said just to use the zopiclone for a week , which I did but then as soon as I stop it goes back to terrible nights sleep . I’m currently using a great product called Irwin naturals Melatonin , 5htp and Rhodiola and at first I was getting 4 hours a night and mood has been lifted 90% which made it bearable. The supplement is still having a positive affect on mood but the sleep is just decreasing again and I’m getting 1-2 hours . It’s really effecting my life and is the WORST symptom for me as it affects just about everything else . I read here a lot of accounts and most people have severe insomnia at the start of discontinuing finasteride but then a lot of the stories I read people see improvements. I’m on 8 months of discontinuing and I was sure I’d be over this now . It’s really affecting my life in ways I never thought possible . I read most of the finasteride suicide stories and they all seemed to have severe insomnia too . I sure as hell know how they feel , it was probably affecting just about everything for them . I’m usually a positive person through this but at the moment Im really struggling. I have tried most things - Melatonin , CBD , Valerian, magnesium, …this supplement I take at the moment has just about everything in it - L Theanine , passionflower, lemon balm, ashwagandha, Rhodiola, Melatonin, magnesium , 5htp and it makes me feel great and takes the edge off it but isn’t knocking up the hours . It’s almost like my body has lost the ability to fall asleep . I lay there for hours and hours . I can’t even nap during the day . It’s really bizarre and if it is from this drug , then this drug is PURE evil to do that to someone’s vital body function like sleep . Should I try glycine ?

I don’t have any particular medical advice man but if your body managed to get back to a decent sleep schedule for 6-7 weeks just trust that your body can get back there again. My sleep has improved recently where I’ve actually managed to sleep for 7-8 hours unassisted several times a week for the last 2-3 weeks. My sleep was absolute shit for 6 months very similar to what you describe. What helped me was just managing the shit periods (talking to people in my support network, seeing a psychiatrist), and striving to go about my day as normally as I can despite brutal insomnia.

Personally I agree that fin-somnia is far worse than the sexual sides. I can relate to the passing suicidal thoughts bud. Just recognize these thoughts are simply a product of lack of sleep compounded by circular thought processes like ‘i’m broken’ ‘my brain doesn’t work anymore’. Try and reduce manage these sorts of thoughts as much as feasible, be kind to yourself during these rough periods, and avoid stress. Your body will find its way back if it has managed to do so before.

Sorry if this advice is ‘run of the mill’

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Im in th3 same position as you.
Cant sleep at all. It screws everything up.

Can you tell me which chemicals are ‘risk free’ to try?

No way is this advice run of the mill , it’s really encouraging and has helped me today reading it . I’m glad you are doing better and that you understand how rough it is . I willl take those points and try my best to get through , I know it’s easy to manifest a bunch of negative thoughts after a night of 1 hours broken sleep . In fact it’s a struggle today just getting through this part but I’m trying

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Not sure any of the pharmaceuticals are risks free - the one I took Eszopiclone has tolerance , dependence issues with it , which is a shame as it works good . I know the antidepressant Mirtazapine (Remeron) is supposed to be good for sleep but it has a terrible weight gain side affect . The only anti depressant I would consider for sleep is Amitriptyline which I am debating to take myself at some stage. I have heard things about the amino acid Glycine which is supposed to be great for sleep issues

No worries give this podcast a listen, it really helped me when my symptoms have been at their worst.

Dr. Bruhin is a psychologist who has PFS himself he touches on a helpful mindset to have whilst going through PFS. He does an excellent job explaining that although it is going to take a fair bit of time for our health to improve, we should be optimistic that progress will come and central to this is to actively avoid falling into despair.

I’d also advise focusing less on the specific number of hours you sleep and more on how you feel in general. Stressing on specific numbers of hours is unhelpful. If you feel ok don’t make yourself feel worse by stressing about set hours.

Also if you can’t sleep don’t go toss and turn in bed all night, go have a bath, watch some tv or read a book. Nothing worse than punching a pillow all night.

Try and keep progress in perspective. Hope you feel better soon.

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This is awesome - I have heard of Dr Matthew Bruhin - he is based in San Diego and I was in LA at the time when I first got this issue so I considered going to see him. I guess I still can via Skype! I will check this out today- didn’t realize there is a PFS global podcast either , awesome !That’s some good tips , it’s the right thing to do re getting up in the night , it’s the only thing to do really. Thanks again for the encouragement , I hope you get continued progress too!

Thanks for the podcast! Why there are nothing new there from 2017?

We have a psychologist who has pfs and we haven’t gotten in touch with him?

Has anybody attempted to do so or does anyone who know someone who has?

Take 10mg of hydrocortisone prior to bed along with your melatonin

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Try this, exactly how I did with this air mattress

https://forum.propeciahelp.com/t/body-temperature-needs-to-be-colder-when-sleeping-now/9310/16

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Interesting …core temperature has to be kept down . This mattress plays a part in helping ??

Hydrocortisone like the steroid cream yeah …Is this available over the counter and do you know the mechanism of action for it??

Yea it traps practically no heat as long as the room is cold. Regular mattresses trap too much heat. You’ll have to experiment with blankets and layering of clothes, and ac temp though.

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Woa! That’s awesome , it is a problem for me getting hot at night . It’s not that expensive either

You can try the chilipad or bedjet to keep cool at night. The chilipad, which I have, goes on top of the mattress and actively circulates cool water. The bedjet is a fan that blows cold air under the sheets. 63-68 degrees is probably the best temp for sleep

I’ve also heard some people here have great results with Belsomra, a sleep drug.

I never knew these devices even existed , that’s really good to know and I’m gonna check em out ! As for Belsomra…I tried them one night while I was still living in the USA, I have since moved back to the UK where they don’t have it . It didn’t help much that night from what I remember but it did have a nice sedating effect ( I did take right in that 1st month post discontinuation where insomnia was particularly severe and stubborn so that might have had something to do with it not working that great) I’d also be reluctant using anything that’s made by Merck lol do you know how many people have used it on here?!

Hello! I am having similar issues, and I would love some advice. @Forwardsnotbackwards

Hi Nait , I just read your post . It’s always disheartening to hear that someone else might be about to experience what I experienced so my heart goes out to you :pray: there may be a fairly tough road ahead for you over the next six months or you may get over things quicker and improve over three months - I just thought I’d be real with ya and say how it is unfortunately.
I’m still getting through the sleep issues myself - I do find them worse than any of the other symptoms to be honest as insomnia makes me feel like a different person and it is not a help at all speaking to anyone else for advice as the “insomnia” most people get isn’t as severe as this to be honest .
The group of people I have observed who seem to have similar insomnia to this are women going through the menopause- which would indicate something hormonal possibly with how we are processing estrogen through receptors .
Anyhow- it’s no reason to give up and every reason to push forward and back yourself better .
First up , there are lots and lots of people here that have had severe sleep dysfunction from finasteride and have recovered that particular symptom somewhat . It seems to be one that is fairly severe at the start of the syndrome and for most people sorts itself out after a while . This is some hope to cling on to .
My advice is a little unclear as I’m still in the process of sorting this out myself !! However I can tell you what I did as I had this symptom fairly badly .
At the very start of all this I tried trazodone and for a while it worked and then wore off in a similar way you described .
In the end I decided to use Eszopiclone (zopiclone is the closest drug in the UK) after weighing up the pros and cons - it is addictive after 2-3 weeks of continuous use , it gives tolerance, dependence, it is very similar mechanism to a benzodiazepines (like your lorazepam) but is considered slightly better for sleep as they have shorter half lives and coming off them is a much lower risk of seizure than it is for benzodiazepines.
I figured getting some sleep is better than nothing right now and Eszopiclone gave me 4 hours most nights and up to 6 hours occasionally . It was still rough as I was working a full time job on top of all this in high stress atmosphere (restaurant manager) once I got some sleep in immediately noticed some better cognitive affects of course , also a routine of going to bed was forming again , so I’d actually reccomemed this route for you temporarily . Even if you use zopiclone, ambien or sonataor for a couple of months And you’re CAREFUL (no booze on it etc) then it’s not the end of the world .
Other things I did was totally eliminate my stress- I know not everyone is in a position to do this but I quit my job moved back to the up and have been recovering here with family whilst doing an open university degree part time at home. Like I say not everyone can do this …but if there’s a way you can make some changes to your life and eliminate any stress than do it . Even if it’s for a couple of months .
Next I advise to focus on weights and cardio. I also had gynocomastia one sided , so the weight training and fitness has pretty much knocked that out . It also helps build up of adenosine during the day (especially from cardio) which helps us fall asleep at night . Watch your caffeine intake last 5pm as caffeine wipes away the adenosine you have built up through the day .
After 3-4 months of continuous nightly use I was able to taper off Eszopiclone (zopiclone by the time I moved to :uk:) . For a while 6-7 weeks I was able to get adequate sleep on just a melatonin OR a valerian root shot .
The insomnia crept back and returned somehow about 5 weeks ago (hence this post!) which was disheartening as I had come so far . However to be honest I have felt encouragement from several members on here which really helped shout out to @LazarusRy @whathaveidone4669 @Greek @Frankie1988 plus several others , so I really encourage you to turn to us on here when you need it .
Since then my UK doctor who is awesome by the way - suggested a sleep clinic and also to use zopiclone as and when (not continuously) .
Right now I use zopiclone about 2 times a week sometimes less and I turned to this strange supplement I picked up before I left the USA that I never used and it just sat on my shelf.
My mum found it and she has been so helpful too and she looked at the ingredients and said to give it a go. It took about 7-10 days to build up but it is fantastic and to be honest the only thing that has made me feel somewhat normal during all of this PFS crap. It has helped reset sleep, sexual function , mental positivity just about everything .
It is Irwin naturals Melatonin plus 5htp and Rhodiola.

I know it contains a bunch of stuff that some people have been made worse from like 5htp but I guess it can be a case of “different strokes for different folks “ sometimes, as this stuff has made things better for me . The ingredients are : B vitamins , vitamin D, magnesium , melatonin , L Theanine, Rhodiola , 5HTP, Ashwagandha, chamomile extract, passionflower , Flaxseed oil and lemon balm.
Can’t pinpoint which exact thing has done the trick - I’m thinking Rhodiola has reset HPA axis over time , Ashwagandha has knocked out the cortisol (that keeps you awake) and all the other ingredients like Magnesium , melatonin , l theanine , passionflower etc are just working on the sleep centers of the brain and making it happen. 5HTP is making me feel good less depressed and anxious so that’s probably aiding the cycle.
That’s where I’m at so far @Nait I hope you get some success and please reach out if there’s any other questions I can answer for ya !

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I can’t thank you enough for your response. I am very glad (and kinda worried) to find someone to share this experience with. And after all, if it is still not a year since you stopped fin… let’s see.

I have to tell the doctor about this head pressure. Insomnia is hand to hand with it. Regarding the estrogen issue, did you speak with any doctor about it, or about whatever is happening inside our heads? I told my doctor that I was almost totally sure this is bc of finasteride and he kind of believed, I think, after I told him what I am experiencing, and mentioned the existent studies, etc.

I am very afraid of drugs and I hope I will manage to not need them very much… but this, as you perfectly described, is something to treat not only the psychological way I am afraid. I just went into relax and, though I relax, I can not sleep. Besides I feel some nerves connecting to my eyes and making hard pressure, and my head pressure behind.

I am in a lucky situation, studying from home and with family in a small town. I have always been really quiet. This caught me off guard. If whatever treatment I will need allows me, I could be doing ok.

Melatonin has been doing good to me, and so passionflower and valerian. I want to try magnesium. And as they told me here, caution is the watch word.

I hope I can explain this to the doctor in order to set a good treatment. I will tell him about this ‘non benzodiazepine’ drugs. Thank you.

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