New member need help in finding some form of medication to get me through the worst of this

[Tzinkman]

NEW MEMBERS, PLEASE FILL IN THE FOLLOWING TEMPLATE. This is so that we can more easily track symptoms and hopefully find patterns in our syndrome. This will also help others understand your background and situation.

1. Where are you from (country)? UK

2. How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Google finasteride side effects

3. What is your current age, height, weight? 32, 6’2, 160 llbs

4. Do you excercise regularly? If so, what type of excercise? DId prior to fin use all the time, brief semi recovery period where I went back to gym, can barely leave house now.

5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Hardly anything now, used to love eating. Managing white rice, boiled eggs, chicken, ground beef, spinach, broccoli, variously

6. Why did you take Finasteride (hair loss, BPH, other)? Hair loss

7. For how long did you take Finasteride (weeks/months/years)? Four days

8. How old were you, and WHEN (date) did you start Finasteride? 32. March 5th 2018

9. How old were you when you quit, and WHEN (date) did you quit? 32, March 10th 2018

10. How did you quit (cold turkey or taper off)? Cold turkey

11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Propecia

12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 0.25mg

13. How long into your use of Finasteride did you notice the onset of side effects? First night

14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Put an X beside all that apply:

Sexual
[x ] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections
[ x] Loss of Spontaneous Erections
[ x] Loss of Nocturnal Erections
[ x] Watery Ejaculate
[ x] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ x] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[x ] Confusion
[ x] Memory Loss / Forgetfullness
[x ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[x ] Suicidal Thoughts

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[x ] Muscle Wastage
[x ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[x ] Persistent Fatigue / Exhaustion
[x ] Stomach Pains / Digestion Problems
[x ] Constipation / “Poo Pellets”
[x ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[x ] Lowered body temperature

[ ] Other (please explain) Feeling of being pulled to my bottom right, has gone on for months, now in the last week has progressed to affecting my vision so that everything looks slanted on its side. Room looks isometric.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Ten day water fast during first crash, had some promising progress during re-feed but almost all gains have gone.

If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)? Huge increase in estrogen and SHBG, very low free testosterone levels.

Anything not listed in the above questions you’d like to share about your experience with Finasteride?

Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

I don’t have the strength to post my full story here, I will try to edit later but I am basically suicidal now. I’d like to know what people here think is the best anti-depressant or medication to try.

[axolotl]

Hi Tzinkman, first of all I’m so sorry to hear you’re in the worst of it. I can relate to the short use and dramatic effect. I am a very, very severe case after only one dose of 0.25mg last year. I had symptoms on it, recovered, then crashed two days after. I had only taken two 1mg pills before in 2011.

As you probably know there is no universal treatment for PFS right now, but if you desperately need something to get through the crash period you could consider trying a benzodiazepine drug. I sometimes use valium, but others here have had some relief with clonazepam or xanax. There is suggestion in published literature that the persistent problems between antidepressants and finasteride may have some link, and in many anecdotal cases SSRIs worsen the situation so I would personally avoid antidepressants if possible or at least avoid this class.

All the best. Update us when you can, and please hang in there.

[kon93]

hey tzinkman looks like we took fin around the same time at the same doses with the same side effects… all i want to say is hang in there man my balls look like tiny grapes right now and im just waking up to sleep again but im not giving up, we will get better somehow.

[borax]

Hey Tzinkman,

Very sorry to hear you are going through this.

Your low T and High E levels are promising, and as far as antidepressants go, I’d avoid anything unless you’re already on one for the same reasons axolotl suggested. Some people have had success with non SSRIs, however it’s pretty hit/miss and I’d avoid committing to anything for now.

For crashes I’ve used Gabapentin and Xanax/Valium, and it’s a pretty solid combo. Gabapentin tolerance develops rapidly but using it helped consolidate my sleep again, and you should be good as long as you use sporadically.

All the best, and please let us know if we can help in any way.

[Tzinkman]

Thanks for talking guys. I think I may have one of the worst crashes ever. I don’t care about my penis at this point. I’m nearly falling over walking through my house. The severity of pfs varies and in the last week, my brain is dying more and more each day. I can just about make myself some eggs and microwave my pre cooked rice. I may not have a brain left by next week. That’s why I’m resorting to drugs which I have resisted until now. I have diazepam and mirtazepine. I have a loss of senses where nothing seems real and I don’t feel conscious. I was trying to cope with this the best I could the last few months but when I saw the world was titled on its side, I think the game might be up. Impossible to live like this. Severe vestibular disorder plus brain dead pfs. So I suppose try the diazepam then the mirtazepine. I’m terrified that soon will be put in a mental hospital with full dementia and pumped full of drugs to keep me alive.

Complete brain damage going on here. Need to add loss of balance and coordination to symptom list on foundation. Never heard of anything so bad with pfs. I may be dead soon but I want it documented that I lost balance and visual coordination.

[Scotsman]

I’m really sorry to read your story Tzinkman. Please hang in there. You’ve probably read that the PFS Foundation are currently investigating causation and we may well have answers and potential treatments soon. Although PFS has hit you really hard, every man’s account adds to our collective understanding. If you can, please consider submitting a MHRA yellow card adverse event report, or check that your doctor has reported this as what has happened to you needs to be heard.

[axolotl]

Tzinkman, I know it won’t seem like it because of where you are now, but I know full well what you’re saying. The only cases I found like me on these forums are dead. There’s no way I could go through the lot of it but I couldn’t cook, I couldn’t co-ordinate my walking, no way I could cross a road on my own as I could not perceive speed of moving objects and would have a panic attack looking at a screen or out a window. I couldn’t do shopping on or offline. My sense of smell lagged by seconds. My reflexes down my right side were unresponsive at the doctors, and the absolute most dangerous symptom was my autonomic breathing failed repeatedly in the seconds of sleep I got and often while I was awake. I would become exhausted having to breathe manually and wake up gasping for air. I felt like my brain was in a goldfish bowl in a dream, I didn’t recognise human beings and could not parse faces correctly. Couldn’t use a computer, forgot my entire life. No sleep for months. I couldn’t move with the prostate pain and my teeth hurt like crazy, no idea who i was when I looked in the mirror. I was completely, completely out of the world and my brain stem burnt, with waves of strange sensations going across my brain. No one could possibly imagine it who hasn’t been through it…a lobotomy which also took my soul. This is all without mentioning physical and sexual stuff. I am not better and still in a dreadful way with physical symptoms, pain, severe anhedonia. I still can’t play games most of the time and can’t drive, but it’s remarkably different to what it was during my crash in terms of clarity and being “in the world”. I can take care of myself etc, go out a bit. You will improve from where you are. At about six months my derealisation started to slowly lessen to the point I began studying epigenetics and helping projects such as rebuilding this forum from its previous situation.

Scotsman’s post is good advice; I’d second submitting the report to the MHRA. As he says, promising research is ongoing into the issue. Myself and others are working as hard as we can on projects to advance this problem and I know that isn’t immediate comfort but I would hope you focus as much as you can on waiting this out and self caring as much as is possible. I struggled and still struggle greatly with getting those around me to understand but I was very lucky that some good friends looked after me and stuck by me when many couldn’t or wouldn’t understand. Try and find your most empathetic friend of family member and get someone who you can be open with to provide support if you haven’t, it’s very important.

[Tzinkman]

Thank you for that very brave post. Don’t know what to say. I have to start mirtazepine tonight, before trying to sleep. I may be dead by the end of the week if I don’t try something. I’ve gone too long already straight with no drugs to at least try to get by.

[ignite]

The supplements that made the biggest difference for me were various probiotics and glutathione.

[Tzinkman]

My mum is doing everything she can for me (I have to live with her and I’ve been put on disability benefit). It is incredibly difficult for her, she is watching me die in slow motion. I would be dead already if not for her. I started mirtazepine a few days ago, and whilst its given me solid sleep, every day is still the hardest day of my life and I spend the vast majority of it wishing someone would kill me swiftly. My fear is that soon they’ll put me in a mental home and keep me alive with drugs and I won’t have the resources to end my life myself. Don’t want to be in a padded cell.

Has anyone ever put the foundation on a fund raiser type site?

Also, I put my details into the foundation site where they said they’d connect me with other sufferers within two days but nobody’s contacted or even acknowledged the email and it’s been several days.

[Tzinkman]

Did you have severe depression and if so, did those recommendations help for that?

[lbv]

Anti-depressants can give you PFS too dude, they’re just as risky as finasteride. You’re risking a lot taking them so early on. 3 months isn’t a lot of in terms of time. Depression and suicidal thoughts are real side effects, most of us have had them, but over time (12+ months) they get better. You’re not going to die from lack of sleep, the user anonymous is living proof of that, and as long as you don’t try to kill yourself you’ll live to see your side effects improve.

I really suggest you get off all drugs and just wait, the first year was hell for me and a lot of other people here but most of us made it through.

[axolotl]

Re fundraising, we are working on substantial plans for fundraising efforts right now, and other projects towards that end too. Beyond that there is a major study ongoing that those of us involved in the scientific side of this condition are cautiously hopeful will be a watershed moment for this that we can build on. PLEASE hang in there, I know I can’t say anything that will make you feel better but I can promise you I know how precisely brave you are being. It’s also an awful, horrific ripple effect on everyone you love, I know, but it’s great to hear your mother is supporting you right now. Here is the link to the yellow card scheme to report what’s happened. Please do: https://yellowcard.mhra.gov.uk/

I also know the fear you mention. I would advise printing off the precis here of this study and highlighting the first and last sentences of the abstract. I found it useful in my interactions with doctors and psychiatrists.

[Tzinkman]

It’s not that I’m depressed as a result of not being able to get it up or no libido or the thought I can’t work or anything like that. My brain actually feels numb and sometimes my senses aren’t functioning correctly, like having a tilted room or my brain thinking I’m falling backwards even though I’m sat on the couch. I don’t want to die but it’s extremely difficult to live with the symptoms I have now and the fact in many ways I’m getting worse as time goes by not better. The weird thing is is that the severe brain swelling and pressure that would hit most times I ate in the first three months is gone.

[Tzinkman]

Thank you for understanding. I’ve been treated with suspicion by almost every doctor I’ve seen so far when mentioning this is all because of finasteride.

[lbv]

I don’t know how severe your side effects are but it seems like your symptoms are a result of a lack of sleep if that’s why you’re taking mirtazepine. I had brain spasms every day for a few months when my insomnia was at its height. Your situation sounds worse but I don’t think you’re gonna die from it so I really suggest getting off mirtazepine and using another sleep drug like unisom or not using any at all.

Read my Body Temperature Needs To Be Colder When Sleeping Now topic because it helped me sleep better when I discovered the low body temperature

[ignite]

Yes but probiotics helped mostly with brain fog, which is a big thing, you usually hit a plateau in a few weeks and then only need to take them once in a while. I went overboard and went two years without taking any probiotics so after I bought some last week I feel substantially better in terms of mood. Depression is the last of your concerns, you have to be real weak to kill yourself because of how sad you’re feeling knowing full well you’ll be fine in a few months, physical pain is much worse and that’s what you need to fix before you literally drop dead from pfs after months and years of 24 hour physical stress. Get your body in order and just try to accept the emotional pain until you are let out of prison again so to speak. You’re lucky you have this forum, results are quick because we already know some things that work and you don’t need to do trial and error as much, if this was the 2000s you’d be really screwed because all you’d have is your doctors who wouldn’t even believe fin caused anything besides temporary erectile problems. Who knows how many men already died from PFS from suicide or the breakdown of their bodies.

[axolotl]

Hey man, sorry your post yesterday was lost due to having to revert to a slightly earlier backup. Do repost if you have it or update if you need to get your feelings out, it’s very important to document, especially for those of us hit so bad by this. Just wanted to say hang in there again. What you’re going through (literal hell) cognitively will improve in clarity terms, and I’m not giving up on a fellow dark souls fan

[ignite]

It’s summer so get lots of sun. Raise your body temperature during the day and keep your room cool when you sleep.

[Tzinkman]

Feel so dead, it’s unimaginable how approximately 1mg of a drug that is essentially over the counter in the UK can do this to a person. It gets to where I’m scared to go to bed because I know I have to wake up and do the whole thing over again. Honestly, the way I feel now, I have no idea how some guys did this for years without giving in to suicide.

This guy had bad pfs: http://www.postfinasteriderecoveries.com/

and he said he recovered! Only problem is it took him seven years. His story gives me hope that all this is reversible but seven years is a very long time when you feel the way I do.