Discussion in 'Post-Finasteride Syndrome & Accutane Sufferers' started by Took_accutane, Mar 16, 2012.
Funny you should post that, I was just emailing her.
I'm still kind of new to this forum. I think Dubya_B posted a link to my blog, http://bloggingmybetterment.wordpress.com/, my dark but occasionally informative corner of the internet.
I am not here to tell everyone how to deal with what has happened to you as a result of Accutane. It's personal. But we can all agree that it's bad and that it is an injustice. So I believe we have to speak up, no matter the forces we are up against.
I have been encouraging members of acne.org to do a couple of things:
1. I have Google Alerts set up for Accutane, Roaccutane and isotretinoin. When news stories break about these terms, they come through to my inbox. This gives me the opportunity to share my opinion in the comments section. I want my voice represented where people are debating the merits of this drugs. Accutane articles come out all the time. If you choose to leave comments, you may use a pseudonym if you like.
It must be noted that you will get some spam links like "Buy 40 mg Accutane without a prescription here." I just ignore them. The good stuff does come through, and then I descend with my comment. Sometimes you have to register on a given news site, but I just do it.
2. Recently some families who lost their children to Accutane met with several British members of parliament. One of those is Ed Vaizeye (as I read in an article http://www.oxfordmail.co.uk/news/10..._bright_and_talented_child___/?action=success). You may email him at firstname.lastname@example.org.
There are so many ways we can leverage the internet, and we absolutely should.
Hey guys, 22 year old suffering from accutane. I started taking accutane in March 2009 (my second round). By June 2009 I was diagnosed with pseudotumor cerebri, so I did not finish my last month. Over the next few years, I could feel something just wasn't "right". I was beginning to feel more tired, body was feeling weaker to the point where it was getting harder and harder to exercise, and I also had more anxiety than I had ever had in my life. I didn't think much of it at the time, becuase I could still pretty much get through the day with no problems.
It wasn't until January 2013 that I experienced a "crash" and my libido/energy completely vanished. Weird thing is about 2 weeks prior to the crash, I felt incredible, extra horny all the time, erections hard as a rock, I was almost obsessed with sex, I had never felt like this in my life. Then one morning I woke up and it's like a switch was flipped, I was exhausted, extra anxious, hair started falling out, bones started hurting all at the same time, dry skin/lips almost like I started taking accutane again. I went through most of 2013 feeling like shit, exhausted all the time, not able to get erections at all, my pseudotumor cerebri flared up again, so I was in bed for about 3 months straight, doing nothing. Finally around October/November my sex drive started to gradually come back naturally, it's not anywhere close to what it was, but I now have some libido and sensation again (occasionally wake up with morning wood, just not as hard as it used to be), much better than the initial "crash".
My main concern now is having enough energy to get through the day. Does anybody have any suggestions on how to improve energy? it's basically an exhaustion and I'm sick of just laying around all day. I also find it weird that I didn't experience a crash until 3.5 years after I took accutane. Why would it take so long? I've read other stories and I've never heard anybody taking that long to experience a crash, but I'm sure it was accutane given some of the other symptoms I'm suffering from (why else would I have such fragile bones at 22?). Thanks for any help guys, and here is a quick list of my symptoms.
-Weird Dizziness & Tingly feeling while trying to sleep at night
-Decreased Night Vision
Welcome to the forum 09eric09!
I've not experienced loss of energy like you describe, but most people have found that the main things that help with sides are changes to diet and exercise.
Might be worth trying cutting out wheat/gluten/dairy and if you have the willpower try going raw vegan. Exercise might be difficult if you have absolutely no energy, but worth trying.
Things I've found that have helped a bit are green tea (I only bother with fresh 'dragon well' green tea), gingko biloba capsules and gingeng capsules.
Worth checking out this thread and reading recent posts on acne.org. A lot of talk about cannabis oil currently as people who have been taking/taken this have made massive/full recoveries (although it has taken months), worth checking out!
Message to Dubya_B
Hey my friend, before I begun sorry for my bad English! I had the same sympthoms as you for now 4 years. Nothing has changed and I'm very trist about that :sad: I have read the link of your proviron story!! My hope is, that it works on me in the same way. Now I have a question, do you remember from what page you have bueyd it? I ask you this because there are many fakes on the market... Greetings to you and I hope you are cured and happy today!
Hi, does anyone around here have advice on finding Accutane recovery success stories? My perusal of this thread, so far, has been considerably less than encouraging.
Is it generally somewhat of a consensus that there is no known solution for long-term sexual problems caused by Accutane? In lieu of encouraging results so far, is there at least something to possibly hold out hope for, such as some body of researchers out there making progress toward understanding the nature of the cause?
I think I can speak for most 'tane victims when I say that it is mentally exhausting "searching" the various forums for answers. I just now try to live my "new normal" & just check the forums occasionally. I figure when the "cure" comes, the forums will be buzzing.
Until then, mostly what you'll see is that a healthy diet & exercise is the common denominator. There are many drugs & supplements that may help too with some symptoms but no magic bullets.
I currently am optimizing hormonal levels with a low dose clomid & armidex protocol. Still very low libido so Viagra helps out there in an ancillary way. That seems the best I can do after 5 years of experimenting with many drugs & supplements.
Just try your best to not let the situation consume your life...it sucks but we only have 1 life to live.
What sort of dosages have you been using Dave? How long have you been on this protocol, and can you elaborate further on the results?
First 3 months:
Protocol= 12.5mg clomid EOD. No AI. After 3 months...
TT= 506 (250-1100) (up from 312 natural)
FT= 79.6 (46-224)
Bio= 186.7 (110-575)
LH= 3.7 (1.5-9.3)
FSH= 2.9 (1.6-8.0)
Estradiol= 29 (< or = 29)
DHT= 44 (16-79)
Next 2 months:
Protocol= 12.5mg clomid ED. Plus anastrozole (arimidex) .25mg EOD
TT= 637 (250-1100)
FT= 109.3 (46-224)
Bio= 224.8 (110-575)
LH= 6.9 (1.5-9.3)
FSH= 4.8 (1.6-8.0)
Estradiol= 20 (< or = 29)
DHT= 44 (16-79)
Very low libido before protocol, still low on both protocols. Believe it or not, I don't even really feel any different from baseline (no clomid, all natural). Probably that androgen receptor "silencing" thing at play...who knows. I'm hoping once Androxal is approved, I can stop taking the adex since Androxal is suppose to lose the one clomiphene isomer that causes estrogenic sides. I guess I'm going to give it some time to see if the higher FT levels makes any difference. Hoping to keep E2 at 20...supposedly the sweet spot for many. No change in DHT which is interesting. My DHT was low 20's for first few years post 'tane (maybe some recovery going on?). As you can see from my LH & FSH response to clomid, Accutane did a number on my pituitary...among many other things.
No sense in trying to figure anything out...the medical rule books go out the window with 'tane's version of PFS.
Folks just stopping in with something to try...
I've seen great success using L-Glutamine, specifically free form. Others did not work.
Has practically removed ED issues. When I don't take it my ED returns.
Nothing else has worked since accutane...
I'm not too sure the mechanism or reasoning why it would work but its been nothing short of a miracle.
Be curious if it worked for other accutane sufferers.
Bought today L-Glutamine powder. How much works for you? When do you take it? How many times a day? In my case nothing no-th-ing works for zero libido and poor erections. Will check this out starting from today. Just. let me know what seems to be the best protocol for you.
Sorry I would start with say 3-5000 a day.
Again if powder its more common to get peptide form which really had much different impact for me (in a negative way).
free form does not bond to other amino acids.
I think I've figured out the action involved btw-
And of course it goes back to dopamine. Apparently glutamine is a precursor to dopamine.
So for what its worth I've found it to be a lot more stable then taking l-dopa which has trouble crossing the BBB.
I would be curious to hear your results pab
Thanks for your reply..
Now I'm a bit confused. Thought the l-glutamine I bought was free form but I'm no longer sure now, most probably it's not. Thought "L-glutamine" is akin to "free form glutamine". Now I'm not that confident having read a bit on the web.
Interesting thing is that it improved the quality of my erections either way. I took it as advised on the bag = twice a day 10g which gives me 9290 mg per serving and 18580mg daily... By improved my erections I mean once I get hard (it's still not easy to get hard as I don't have any sex drive/libido) with some help of my gf's hand I no longer loose it so quickly, it's eastier to maintain good level of hardness even if there is no physical stimulation for some time (30 sec or so). Before I'd loose it almost immediately, once there was no stimulation.
Also, looks like it helped me with nocturnal erections which were non-existent recently. Morning wood also, but to lesser extent.
This is the first thing that ever seemed to be working (bar viagra of course).
Now, I really want to buy and test legit free form of L-glutamine. Do you have any brand to recommend? If you could post a link, I'd really appreciate it. After a quick research I see that (at least here in Poland) it's not that easy to find a pure free form. Cheaper products don't mention what they really are, more expensive are usually matrixes (acetylic+estrific+dipeptide+free l-glutamine) or (micronized l-glutamine + apparently "more stable" and NAH n-acetyl l-glutamine). Even quality brands like 'my protein' don't mention what form they use...http://www.myprotein.com/sports-nutrition/l-glutamine/10636931.html
Please let me know, no problem for me to ship from iherb.com or similar.
Anyone tried Tianeptine sodium before? (brands include Stablon)
It's available without prescription (you can get it on ebay etc) and safe even in fairly high doses. It upregulates dopamine D2 and D3 receptors and is effective at bringing back libido and helping with depression - it's also neuroprotective.
I've read of some people with SSRI induced sexual sides recovering with its use. Potentially quite interesting and may have a positive effect for people suffering from tane sides with loss of libido/ED and depression.
Further information here;
Anyone tried it?
I'm currently trying various things and having some success with some, which has motivated me to try further things, specifically targetting things which are out according to my blood tests. Tianeptine is one I'm looking at after trying various other things to try and raise my LH and FSH and lower my cortisol.
Sorry for bumping this thread, but are these symptoms typically associated with the standard 'high' dosage of accutane (1mg per kg per day)/is is possible they could be avoided with a considerably lower dosage?
There's growing evidence that considerably lower-dosages over a long period can help assuage acne whilst reducing side effects:
I appreciate this is more a forum for those that have suffered from previous accutane cycles, so I'm sorry if this question isn't appropriate, but I've been battling acne for nearly 10 years now, and accutane feels like my last hope. Is it possible that accutane could be run safely by using these lower dosages? Or is there always likely to be a risk?
Put it this way Stuart, I took a very low dose of only 10mg per day for 30 days and almost 5 years later am still suffering from persistent sides. Some people have taken a single pill and are in the same boat, I don't think it really depends on dose, it's more about if you are susceptible or not.
If you decide to go ahead it's your choice, personally I'd say you'd be crazy to.
Thankyou for the response.
I'm really sorry to hear that. Reading through your posts (I've only found the posts on this page (page 38)) are your side effects related solely to libido, if you don't mind me asking? Or did you suffer with other side effects with such a low dosage?
can anyone shed some light on the joint pains ? Feet/ankles , knees , hips , lower back .. Supplementing with glucosamine & chondroitin sulfate , along with MSM. Have come to great relief over time I think mostly because my body avoids inflammatory circumstances now ex trying to stay seated etc I have also found wearing sweats or using heating pad keeps the joints fluid , which I do a lot so that could be the reason. But I like to think I have made progress on the supplements because lately I have felt the comfort of being able to run again on treadmill . Used to feel uncomfy or would spark a lot of inflammation now it's not as bad . Any personal experiences / recovery techniques appreciated . Ready to put these pains into remission ! Found great relief reading the hormonal pages too because I'm dealing with libido issues myself as well and fatigue slight anxiety & depression .
From reading 20 pages of these posts it seems clear I've been suffering for over a decade from accutane use. I'm curious what's happened with this forum and where did everyone go?
Has everyone given up or is there a different forum that people use now?
More importantly: has anyone had any success stories that have lasted for more than a month or two? I've pretty much tried everything I know of at this point.
Thanks and hope to hear back from someone..
Wow, I've posted in three forums the same basic question and ... nothing. Is it truly so hopeless or is everyone is some place online that I haven't discovered?
Separate names with a comma.