I recently had a bad crash and have been left in an awful state unable to sleep and complete disconnect of genitalia.
When attempting to sleep on a flat surface I get a burning feeling in the top of my head. When I finally start to fall asleep my brain or body spasms and I reawake.
Sleeping aids are probably no use as my body just spasms at any attempt to sleep.
I can releave the burning discomfort by laying on my side but still my body spasms when falling asleep.
I’m wondering if this is due to methylation which I don’t know how to fix.
When I had a bad headache I tried Ginkgo which made my head feel normal for 3 hours so circulation to the brain could also be a factor.
Hopefully this is a temporary situation but has me concerned for the worst despite trying to maintain calm.
If anyone has been through this or has any ideas please let me know. Thanks.
Lots of people have reported twitches or spasms. I’ve had them at different times, I don’t have them now.
If you prop yourself up with extra pillows under your head, neck and back to a slightly more upright position that might help your burning feeling.
Thanks Greek That has worked to releave the burning but I still spasm and my brain feels wide awake. I’m about 10 days post crash and not slept since.
I am sorry to hear that. How do you feel? Is your heart beating very fast? Are you able to use relaxation techniques to calm yourself?
I would say that if you haven’t slept in ten days you should be going to see a doctor.
I have never used sleep medication but it has been written about a fair amount here. I would do some reading before heading to the doctor so you know what to ask for.
Remember SSRIs (which I believe are prescribed for sleep sometimes) are to be avoided.
My heart is fine at the moment, Im taking magnesium and using meditation to relax.
I’m seeing the Dr today.
Thanks I’ll stay clear of SSRIs.
I have some Valium and melatonin but don’t know if this could make things worse.
Ambien seems to be tolerated around here not sure about anything else.
I’d do some reading about which drugs are well tolerated and go from there.
Thank Greek really appreciated
Hi @Andrew35, I’m sorry to hear you are in a bad way. I know exactly what you are talking about in terms of burning in the head and spasming when trying to sleep. I would wake after a minute or two covered in sweat like I’d been plugged into the mains.
What had you been taking before your crash may I ask?
I took Glutathione for only 3 days and got a pressure headache on the last day. I assumed this was nothing more than a detox headache. I took B12 methylcobalamin at 1mg and the headache cleared up but I stopped anyway. Then several days later I’m going to A&E with a panic attack. From there this thing has just snowballed. I honestly didn’t think this type of crash could happen to me. I’ve been off this poison since around 2013 and but now PFS has well and truly caught up with me.
Thanks Axolol. You seemed to have made a decent recovery from those dark times but those initial weeks must have been very frightening. How long did you go without sleep before things improved? I assume your symptoms came in stages. Did most come in the first month?
My concentration is in and out right now. All I can say is this feels like a very humbling experience but one I think we would all prefer to be having much later in life.
Hi mate, turmeric, cider vinegar, multi b, chamomile, zma, honey have all helped with my sleep word of caution though I took them for consecutive nights but then crashed and developed sensitivity to them all. May be worth a try as a one off or cycling them. I wouldn’t touch any prescribed stuff as they brought new permanent symptoms for me. Relaxation techniques work well too staying asleep is often the problem.
Cheers
Thanks 2981. How are your PFS sides now? I was having a panic attack but just ate and within 10 minutes it went. I’m wondering if any empty stomach aggravates our condition. Which prescription meds did you take?
To be honest they are pretty bad I’ve got the lot and off work with it all. Some of what I’ve listed I took before I knew I had PFS. Some things I would have done differently if I’d had awareness and sight of the forum. I think cycling might be the best way! I often have a banana prior to bed and this often helps and hasn’t brought any sides. Can’t help you with the empty stomach but fasting may help as it kicks in HGH as well as testosterone. 8 hrs on and 16 off is recommended to improve androgen function. I’m trying that myself right now. In terms of meds my GP prescribed anti depressants which had a relaxing effect to help with sleep. All helped to an effect but they aggravated my wider PFS. I would steer clear even though some have had benefits. Can’t remember them all but most recently it was mirtazipine and trazadone, paroxetene worked wonders for a number of years for the anxiety - my only symptom for a long time whilst continuing to take propecia in ignorance. Personally I think diet, health and fitness and the odd supplement with caution is the best bet. Hope this helps.
Well for me taking finasteride again was sadly a kafkaesque transformation and I have not made a recovery, decent or otherwise, in any domain. I am now just about able to function enough to get the work I need to do to maintain this site and the projects we are organising regarding this issue done, but I am extremely frail and unable to attain any quality of life due to the severity of my symptoms. Bear in mind I am on the extreme end of the spectrum.
I don’t want to go through them all for the sake of us and others, but regarding the symptoms you mention: My sleep improved from zero to about 3 hours over the course of about 6 months, along with a reduction in panic attacks and a lessening of derealisation. The burning in my head/top of neck stopped being constant and re-emerges periodically. It did not come in stages and was rather gradual. I had setbacks during the time I was trying to find therapeutic relief, but the rapid degenerative physical/sexual symptoms that continued no matter what I did forced me to accept the gravity of my situation.
My condition remains unstable and I am prone to very severe crashes. However, although they have cumulatively not done me any favours, I have near recovered back to my “normal” state after these, though they have taken from two weeks to months. Each time I thought that would be the end of the road. People I know we’ve both been in contact with (@newton, @gents93 and @borax) who were much more in line with your previously described condition than myself have also had a number of crashes and seen a 2 week to a month time frame for getting back on their feet. Obviously this isn’t always the case and I can’t make guarantees as much as I’d like to, but I would not consider this is permanent at this stage and try and focus on just getting through each day.
I have taken turmeric on and off for years to help with inflammation. I added back into my regime approx 6 weeks ago for the usual reasons. A couple of days later I noticed a reduction in all PFS sides and an improvement in mood and all other cognitive sides. I honestly thought I was starting to naturally recover. The old me was starting to re emerge and I was making renewed plans around my life, family and happiness. Then two weeks in it crashed and after some back tracking etc realised what had brought on the improvements. It shows that there is hope for improvements but I’d try it on alternate days if I was you. One capsule in the morning should do the trick and give it a few days to kick in. It brought on drowsiness in the early evening which was the sign to hit the hay. Have a banana too. G my views and were all different what works for some doesn’t for others. Good luck
@axolotl Due to the work you put in here, you’ve done a remarkable job of convincing many that your worst symptoms are behind you. I have a theory as to why some people get the mental sides more than others. I think it has something to do with how the brain is connected. I believe creative people have a wider access to their brain and are therefore able to think more openly. It would be interested to know if the worst affected are actually the most creative in terms of personality, job and social/leisure activities. While the least affected may find themselves in job roles that are more ordered and rule based. It’s just a thought.
@LazarusRy The problem with PFS is that even if many of us knew about this we may still have taken it anyway because imagining this horror is very difficult. If the prescribing physician warned you that you could lose everything if you took this drug then for some that would be enough. This is why the Foundations efforts to promote the negatives of taking Fin are so important. But will people ever be able to make an informed decision about a hairloss drug? We really need Doctors to play a huge role in this which many are not.
Are you able to digest food and sleep? Both very important for making a recovery.
At 2pm I was a mess, blood pressure dropping, in panic mode, voice lowered and concentration all over the place. 30 mins later I was like a different person and that was after eating a potato and some magnesium. That was some potato.
Ac3c,
If the labelling for propecia was accurate when I first took it 20 plus years ago I would not have taken it. At the time it only advised of a temp potential loss of libido. If it displayed the potential sides as it does now I would have wide birthed it 100%. An informed decision.
Good point, re food I am now quite sensitive to ntake, within minutes of eating certain foods I can get a reaction, generally only the bad kind though. I haven’t had a good potato yet!
Has anything worked for you in improving gut health? When my crash started I noticed within minutes anything I took on an empty stomach would cause a headache. Amazing how quick the two connect.
Hi mate,
I have live yoghurt every day! Unsure if its done anything or not! Overall though I don’t have a lot of problems with gut health that I’m aware of though it may be responsible for some of my symptoms. Re the fasting, been on it for 2 days and my sleep has improved. May be worth a try for your insomnia. I’ve also tried to cut out estrogen causing foods. Basically I eat between 9.00 and 17.00 with water outside of these times. Best sleep I’ve had without prescribed meds.
That’s encouraging, how much sleep are you getting? What time do you go to bed and get up?
Pleased to hear your sleep is better. I just ate leafy greens and chicken after 5pm. By 10:30 I felt tired and ready for bed. Last meal around 8pm. I figured those heavy carbs require more digestion time, so you’re definitely into something. Unfortunately the brain jolts wouldn’t let me sleep. Another night of sitting in the dark for 3 hours listening to meditation videos. Living the PFS dream 
If you can digest food and build up sleep you’re giving yourself the best chance to improve.