Guys, help me out please. (Brazil)

Member Stories
#121

Gmmoura- I cant believe you just wrote that!!! I have stated on here, that while on Fin, I came down with an extremely rare condition called Mal De Debarquement. This is basically a condition where you feel the rocking of the boat AFTER your off the boat. I felt this for months and months after a cruise I took 5 years ago. I feel undoubtedly that what happened to us is neural/hormonaly linked, and I often check on Mal De Debqarquement progress to see what is happening. They are now attributing it to some biological neural hormonal brain differences, and it primarily affects menapausal women in their 45-55 age range.

JUST today, I saw a study using Transcranial Magnetic Stimulation to attempt to treat patients with MDS (mal de debarqument syndrome). This may potentially be a real option down the road for us. by the way, MDS is INCREDIBLY rare for a man to get, basically it affects over 95% women.

#122

sorry, below is the link to the MDS study, involving Transcranial Magnetic Stimulation

ncbi.nlm.nih.gov/pubmed/23202153

#123

Yes, let’s see if TMS can help us. The main problem is that it’s gonna cost me around R$12.000,00 (US$5.000,00) for 20 applications. After that, if and only if it works, I’ll have to come back every now and then for “maintenance” applications. I’m currently trying to make my insurance pay for it, but since it’s a new treatment, they will most likely deny it. There’s not enough convincing studies proving TMS efficacy.

Nobody answered my thread on TMS. I do think it might help. As I said, I have nothing to lose. I’ll probably try it even if my insurance denies.

#124

I would hold off a lilttle bit, its a lot of money and the efficacy is not yet studied. Meaning how much and how long to properly stimulate the region. I want to run this by both the MDS people as well as those researchers involved with PFS. I think it points to a connection with neurophsiology, changes in the brain metabolism, most notably the left cortex. I have a feeling that when they get the results of the fMRI studies this year at Brighams Women Hospital, they will see that our brain metabolism has been severaly altered, pointing to excitbiity in the brain. BTW, the fMRI’s of those with MDS already show an altered brain metabolism. This would be a huge connection. Also read the link below by the leading researcher involved in MDS…she notes patients with anxiety, fatigue,chronic fatigue syndrom, severly disturbed hormonal imbalances…sound familiar?

Here is some more info on MDS

abclocal.go.com/kabc/feature?sec … id=8389704

#125

If our brains have been altered in some way can they be changed back to their original state ?

#126

Mark2012,
My answer to you is: YES, they can. There are reported cases of full recoveries here, which means that it’s possible, even though it’s very hard to achieve.

Finatruth,
I will not hold off even for a minute more. I’m not crazy enough to mess with my hormones again. I know a lot of people here took progesterone, testosterone (TRT), androhard (DHT), etc etc etc… Nobody recovered with hormone replacement therapies (HRT).

Things are different with TMS. I read a lot of papers and they all seem to agree in one point: there’s no side effects or a low probability of sides to occur. When they do occur, based on what I read, the patients end up with headaches and dizziness on the day after… I mean, what can I lose? Joetz have tried stem cell therapy, countless people have tried HRT, Clomid, Novaldex, etc etc etc… The list is almost infinite…

Besides, I’ll have medical supervision. It’s not something I’ll be trying by myself.

By the way, I do remember that this is pretty much what we heard when we decided to take propecia, including the medical advice part, but what a hell, I can’t just wait the results to come. It’s going to take a long time and it’s too much suffer in the meantime.

If, by any chance, they find a precise protocol in the future (how much, how long, what region to stimulate), it’s just a matter of doing again.

Dude, I’ve tried all possible routes to overcome this depression. I’m seeing a shrink, taking antidepressants, just returned to a mild exercise program, acupuncture, taking fish oil… It’s helped, of course, but I’m still suffering. I need to do whatever I can to beat this bitch. I’ve got the money, I’ll try it.

#127

Today I went to my psychiatrist (yes, I’ve got one to follow up my issues with depression & anxiety. I usually like going to her because she’s a very nice person, good listener, she does believe that my problem is likely to be related to finasteride somehow, etc etc etc…

After a few minutes of normal conversation, I talked to her about trying TMS to help with depression & anxiety. She then told me that TMS is a promising area but still very incipient, she would not recommend it. However, she told me that she had a friend that owns a TMS specialized clinic and could give me his phone number. So far so good…

But then she told me that I “was continuously trying to find something that does not exist”. By that she meant that I should stop trying to research and learn to accept my new condition - and that maybe something was wrong BEFORE I started taking finasteride… She said I’m too young to take drugs like Alprazolam and antidepressants…

Dude, it was like a shot at close range. Come to think of it, she’s partially right. I’m too young to take drugs like this, why do I keep looking for information when there’s nothing I can do about it?

Man, it sucks. That’s what I mean when I say I understand TigerHull’s feelings. I wish she were in my shoes for just one day to see how it is to have this fucking illness…

I’m sorry, guys… I needed to vent it out…

#128

Guys,
First of all, I’m writing this down to thank you for all you’ve done for me. This site taught me a lot and helped me to understand what was going on with my body. I’m really grateful for that. Before I discovered this forum, I had no idea of what was going on with me since I never had sexual issues. I was really lost.

I spent some time thinking about all I was told yesterday and in the last few weeks. I talked several times with my girlfriend and came to the same conclusion that you all probably have come before: there’s no solution for PFS yet. There will be in the future but not for some time in the short term. So, spending time and energy trying to research something that probably won’t help just bring me more sadness and frustration.

YES, this fucking drug put me where I am right now but I am the only one capable of getting out. Nobody else can help me, not even wellbutrin or alprazolam pills - this is just to postpone and put the garbage under the carpet.

So, yes, I’m in this position and life doesn’t always treat you with kindness, but I have to move on with my life the way I am right now and stop focusing on what finasteride did to me.

I’m not going to stop coming here every now and then, but won’t come here almost everyday like I’m doing now. I’ll keep the donations, that’s for sure.

I’m praying to God (I do believe in God - and if you don’t, I just ask for respect here) that this approach will at least give me my life back.

Mew, Awor, everybody else who support people her: you guys are heroes. The bravest I’ve known. I’m sure that the foundation will prove that PFS is real and that it can destroy people’s lives.

I’m not saying good bye, and of course I won’t commit suicide. I’m just saying I’ll keep a safe distance for the time being. I’ll try not to be here.

#129

brother you will get better,

from what i learnt so far i dont believe it is hormonal levels, i have seen multiple doctors including professors who have told me my levels are normal…

I have even tried testosterone replacement therapy with high and low doses(injections) and felt nothing so it kind of makes sense that its not hormonal, now i say this not to scare you that you wont get better but i say this to save you some time and money going down this route.

I really believe this is neurological damage…heres what i think you should do, try it out as these are healthy and easy ways to get things moving…

FISH OIL- take large doses helps with brain function real eaves my depression and anxiety i mean read this article below, the guy who they talk about had severe neurological damage and stripping of his meylin sheath, he is now living a normal life and has fathered two children…

edition.cnn.com/2012/10/19/healt … index.html

MAGNESSIUM - another essential for nerve conduction, depression and anxiety. also is essential for over 300 chemical reactions inside the body including hormones…google magnessium its affects on nerves brain function etc

All the best brother, i have my bad days as well and i can say the days in which they are the worst are when i dont use the supplements ive only just started using these sup consistently and they are helping my brain function so much…anyways stay positive bro

#130

Also brother stick away from dairy, I was having a pretty good day today, go to the fridge and smash back a big ol glass of milk and BAM depression, anxiety, stomach problems like my stomach just flaming up, the worx… Had my dinner of chicken and potatoe with some fish oil capsules and now stomachs feeling alright again… So now I’m putting together a list as I go of what types of food makes me feel bad and will eliminate them from zee diet, remember health starts at gutt…
Peace

#131

Terrible week: depression and anxiety. A few minutes ago I had the most memorable sex in months. I felt connected to my penis and, more importantly, to my GF. I love her, I could feel it in my heart. It’s been such a long time without love. I missed it so much.

Since this fucking illness comes and goes, I’ll probably be back to the same condition soon. However, I still believe this is reversible.

#132

Amazing day. Excelent!!! Good mood, normal sexuality - I feel my dick when I touch my GF, sensitivity, brain penis connection. It’s all back again. Besides, I love her, I feel it.

#133

gmmoura, your headed in the right direction!

#134

Finatruth,
Am I?! Do you believe so?! Today was amazing, sex was unbelievable again, as it should be. In spite of that, I must say that I’ll meet some of the guys of the forum after we win this battle against PFS. Finatruth, you’re one of these guys. I’ll meet you in person to thank you for all the support you’ve been giving me.

I’m happy, guys. Even if it is just for today. It doesn’t matter.

#135

Guys, I’ve got to share this with you. If you look at my thread, you’ll see that I my previous 3adiolG result was 0,59 (normal range between 3,4 and 22,0). I’ve just got my last result (did it this last September, 24) and I’m now with 6,54… Can you help me to understand what it means?!

I’m dealing with a little bit of anxiety, but I’m feeling a burning desire for sex since last Saturday…

#136

Libido went away last Friday (October 25), so here I am again with no libido. I’m better now somehow - the fact that I had several good moments in the last year made me realize that something is changing and that I’ll probably be better in the next year or so. It’s just a matter of time.

I’m having the shrinkage these days - and it’s not just shrinkage, looks like my penis tissue is different from what it used to be. The penis is flaccid, hourglass shape sometimes, tender, sometimes thinner and longer. What a mess…

#137

Libido and sensitivity back…

#138

Well, it’s been 2 years off this poison now… I thought I had to post something to posterity. This year was way better than the first year. I had several spikes of normality which gives me hope to keep fighting. I discovered new ways to handle PFS - looks like anxiety and depression are almost behind me.

I’m far from cured, though. I still have zero libido days (and they are the vast majority yet), numbness, absence of a pleasurable orgasm, vision issues…

I feel like PFS doesn’t even exist when I’m in a good day… I’m hoping this 2 year mark brings me something good to celebrate… There are a few recovery cases after this mark (Chi, for example)…

Well, that’s it guys… Thanks for reading…

1 Like
#139

How can it be two years if your profile says:
Stopped: 20 Nov 2012

#140

@elijah: He quit in 2011. It’s a typo.

I’m sure in the first year there were few normal days, if any at all. Things are moving in the right direction, just very slowly. Hang in there.