My Story, Any Hope?

Member Stories
#9

Stupidkoko,

My biggest issues right now are insomnia and lack of emotions. My penis works but the sensitivity is no where near what it should be. I haven’t had a single night of full REM sleep since this started. Reading all the posts here it sounds like I may never. I am doing my best to keep it together for my Family. Not sure how long ill last like this at work. I’m trying to keep a low profile but people can tell something is wrong. I am getting pain all over my body now from lack of restful sleep. I got some Ambien from my Doctor but it made me feel worst the next day. I think it kicked my anxiety into high gear. If any of you have a suggestion on how to get some REM sleep I am all ears.

#10

DR. G sent me this list of LABs. What do you think he is looking to see? Is there a pattern with PFS?

Serum thyroid stimulating hormone (TSH)
Serum follicle stimulating hormone (FSH)
Total plasma testosterone level
Serum dihydrotestosterone level
Serum estradiol level
Postpubertal male serum LH level
Serum prolactin level
Serum SHBG level

#11

I took 1/3 of a Xanax last night. I did get about 6 hours of sleep. I still didn’t get that ahhh so relaxing feeling from sleeping. Now I wonder if I ever will. It seems like the drug killed the part of my brain that experiences any pleasure sex or otherwise. I am not going to touch the Xanax again unless I get desperate. I ordered that Allopregnanolone spray to see if it might help. I am getting more anxious today with normal casual encounters. Emotions are flat and I cant concentrate for shit. I am at exactly 14 days out and things are not getting much better. So many story’s of never or years for this and that. Not sure how long I can keep this up.

#12

I had massive insomnia the first 1,5 years after finasteride and it didn’t get much better until I tried waterfasting. So I just want to give you some hope and tell you that there are definitely ways to get better (besides time) and maybe you are one of the lucky ones who recover within weeks/months without any treatment or therapy.

#13

I do agree, I feel a little better with an empty stomach… But I wasn’t a heavy guy to begin with and I have already lost 15 lbs. in the last 15 or so days. I have tried several things to get some restful sleep and they have all failed. I wish this drug had just killed me… At least my Family would be able to get my life insurance. Now it seems the rest of my life is going to be filled with misery and suffering. All the things l liked to do are gone, sleep, sex, hobbies, how is this even possible. It’s like the pill blocked my ability to experience joy, love, passion, & pleasure. Sexual or otherwise. It so nicely left me with the ability to fell pain… Thanks! The last few days have turned into a total blur. Time has slowed down. Short car rides seem like they take forever. When I do sleep its only for an hour or so and I wake up. This site seems like nothing but a bunch of dead ends. I have tried some of the tips… Xanax, Ambien, Allopregnanolone Spray, Calcium with Magnesium. Noting works at all. When I start to fall asleep I feel like my body doesn’t know what to do. My hands start to tingle my heart rate increases, then twitches. I have no idea how the guys here function like this for years on end. I am so sleep deprived I can’t contemplate doing much. I am the head of my household… My family is in danger. I can’t believe I put them in this situation for such a vain stupid thing. Nor can I believe that this stupid drug has been out so long destroying lives like this. People with my symptoms on this site have never gotten better. I got full blown PFS, Mental, Sexual. I haven’t tested my hormones but it sounds like a waste of money. So I don’t know if I have hypo on top if it. If they come back low normal all those solution didn’t sound like they helped anyone.

#14

Many of us have been where you are now (me too), but you really have to believe me when I tell you that it is NOT permanent if you give your body the chance to heal itself. I too lost 15 pounds (80kg down to 72kg) but nevertheless I did these waterfasts even when EVERYBODY in my family told me not to and I was very skinny afterwards. But after these fasts you will immediately start to gain weight and if your lucky even more than what you started with (thanks to yo-yo effect).

I myself am going start with short waterfasts tomorrow, that means 2-3 days fasting and the rest of the week eating. That may be a bit uncomfortable because the first 2 days are always the hardest of a fast but that way I don’t have that long downtime I have with a 14 day fast. I also agree that testing hormones is a waste of money. And stop drinking alcohol + coffee, I can’t stress this enough.

If you need a quick fix for you sleep / mood, you could try some benzodiazepine or Mirtazapine (viewtopic.php?f=5&t=8796). These drugs can also help you to gain some weight. But keep in mind that they don’t fix the underlying problem, they are just emergency helpers which you might eventually need right now.

You have to stay strong, for your family, your friends and for yourself.

#15

I did Cal/Mag and 100mg of 5-HTP last night before bed. This is the first time I woke up feeling better instead of worse. I still only got about 6 hours of sleep. I might try 200mg of 5-HTP tonight and see if I can get more sleep.

#16

5-HTP was a bust for me. Had an allergic reaction on the second night of use. I started to feel burning sensation on my skin and in my throat. Took a small amount of Xanax last night. Slept okay. My body is getting weaker and weaker. I sent a message to my doctor and he basically replied with a divorce. He said there is no way I could have all these problems from 24 days of use. He would refer me to a Urologist if I like. Not sure what to do. I have terrible sleep, cogitative slowness, anxiety, fatigue, emotional disconnection, penile numbness. What should I do? I contacted Dr. Goldstein but he was rather vague on what he could do exactly. I can take bloods and fly out for a full work up. However not a lot of success one way or another on the boards here. I think the worst feeling is that you cant do anything but watch your health take a nose dive.

#17

Day 29:

I moved forward with the blood tests today. They did the blood draw at ~9am. I slept last night without sleep aids. I actually slept 7 hours only getting up once to pee. I did get a nocturnal erection and I didn’t wake up feeling like I got run over by a truck.

Here is where I am at today:

Insomnia, (Decreasing, hopefully this continues. I had dreams on and off sleep meds last night.)
Dry Eyes, (No noticeable improvement. Had to get plugs and special eye drops.)
Dry Mouth, (The extreme dryness has let up some but not back to normal.)
Low Penile sensitivity, ( I can get an erection and have sex. Just doesn’t fell like it should.)
Energy Level, (LOW, I was a very active person and this has really f***** me over.)
Muscle Wasting, (I am dropping weight at an astonishing pace and its not fat loss.)
Digestion, ( At first I through I was spared this problem. Nope! poo pellets great!)
Depression, (Up and down. If I concentrate/dwell on this situation I get very depressed.)
Cognitive, ( I feel sharper with sleep as long as its without meds. Still not 100% myself)
Libido, (Way lower then before. No spontaneous sexual arousal.)
Flat Moods, ( I lack excitement for things the used to make me happy.)
Suicidal Thoughts, ( I have never been suicidal in the past. I never understood how others could feel this way. Unfortunately now I do understand. The hopelessness feelings are overwhelming. Especially when you realize that there is no solution and things may get better but could also decline more.)

On the warning label they need to change Libido to Life and ED to permanent neurological damage.

#18

You are one month in. There is still time. Other people have recovered after a couple of weeks and other members have reported natural improvements even after 2 years. I know it’s hard (I am 7 years in), but you have to give your body time. There is a decent chance that things will improve. For me it helps if I force myself to have a normal life. I’m still emotionally blunt, but when I am among people and active for some time I forget to think about it and reach a “flow” status. That helps.

Good luck!

#19

You have to check,your hormone levels time to time

key is the thyroid and adrenal failure after your possible hormonal crash in future,

untili that time

check your thyroid and adrenals frequently

pfs is a adrenal/tryroid problem as far as i understand

#20

My blood work so far…
http://www.propeciahelp.com/forum/viewtopic.php?f=4&t=9196

#21

Things that have helped me so far…

Sleep:
Remeron 15mg (was to much at first felt sleepy all day, Cut to 7.5mg working better for me so far. )

Dry Eye:
Vision issues have greatly enhanced my depression feelings. I got punctual plugs but also needed to treat inflammation with some drops. Vision is better today. Using Oasis drops at night before bed.

Staying social:
Trying not to give up on living. Continue to do things with people as much as possible.

Sex:
I can get an erection but its not like before takes way more effort. I am trying to make sure to stay active in this area. If I don’t focus on how its different then before ect… I still have a good orgasm and I its staring to make me more relaxed after.

Low Stress:
Doing my best to avoid work stress.

Brain Fog:
Comes and goes. This is the worst bullshit. Not sure when its going to hit me. Today has been a good day.

Flatness:
I am not my usual self. Not sure if this will eventually change. Its very strange.

#22

Its been awhile everyone. I spewed irrational bullshit all over the place here. I would like to apologies for things I said when I was very anxiety written, depressed, scared, and confused. I was not acting like myself and I was only focused on negative things under the circumstances. Thankfully I met some individuals here that happened to be very resourceful, positive, and helpful. I credit that with surviving this nightmare.

Anyone can debate what does or doesn’t work and at this point I have tried just about everything possible. The good news is I am and have been fully recovered for some time now. When I first arrived at this site I had a very difficult time finding hope through reports of others recovering. Well I can tell you its possible to recover. I did not believe that when I landed on this site but I managed to hang in there and I am 100%.

Oh and MERK it does not mean that I forgive you! You owe everyone that has lost life to your lies.

Good Luck!
MCI B.O.F.H

2 Likes
Are there people who were cured 100%
#23

Great to hear! And the honesty is appreciated.

#24

Those that crashed hard… This kind of explains what it was like for me at least.

Signs and symptoms of CSWS include large amounts of urination (at least 3 liters of urine output over a 24 hour period for adults) due to inadequate sodium retention in the body, high amounts of sodium in the urine,[1] low blood sodium concentration,[1] excessive thirst, extreme salt cravings, dysfunction of the autonomic nervous system, and dehydration. Patients often self-medicate by naturally gravitating toward a high-sodium diet and by dramatically increasing their water intake. Advanced symptoms include muscle cramps, lightheadedness, dizziness or vertigo, feelings of anxiety or panic (not mentally induced), increased heart rate or slowed heart rate, low blood pressure and orthostatic hypotension sometimes resulting in fainting.[3] Other symptoms frequently associated with dysautonomia include: headaches, pallor, malaise, facial flushing, constipation or diarrhea, nausea, acid reflux, visual disturbances, numbness, nerve pain, trouble breathing, chest pains, loss of consciousness and seizures.[3]

http://en.wikipedia.org/wiki/Cerebral_salt-wasting_syndrome

#25

I crashed bad, but didn’t have most of those. I do suspect that dysautonomia is a significant component of PFS though.

#26

Check out aldosterone levels and how they drop with adrenal issues. Causes sll of these symptoms. Cortef will fix low aldosterone symptoms for most people, but some may need to take cortef + florinef.

stopthethyroidmadness.com/aldosterone/

#27

So, you’re saying that aldosterone being low, the body wastes sodium? And so we crave sodium?

How come I have fluid retention though, I thought this was a sign of high cortisol and aldosterone? I also had high sodium on a hair test.

#28

Hey how are you doing these days man?