Discussion in 'Post-Finasteride Syndrome & Accutane Sufferers' started by Took_accutane, Mar 16, 2012.
Have you tried that?
yes i have tried increasing simultaneously and independently the 3 neurotransmitters and it didn't work.In fact it made me worse sometimes.
Sorry, off topic, but what happened to leviathan?
Sent from my SPH-L710 using Tapatalk 4 Beta
...got frustrated, and asked to have his Mod status removed...hebs
Hey all, sorry to nag but i think its of the utmost importance to get a USP done (check the 24 hr USP thread). We have had two accutane suffers who have taken this test, and they both had very similar results which were off the chart!! Thats a 100% correlation so far!! As dubya_b pointed out the tests are relatively cheap to get done compared to serum tests. Imagine if all accutane suffers got similar readings that were off the chart...this could be the first step if getting recognition from the scientific community that there is a genuine problem not related to our mental health.
Darran, what results are you referring to, the androsterone? What was Dubya's result?
Hey guys, I thought I would stop by to see what has been going on with this forum since it’s been quite some time. I feel bad that I fell off after my post about a potential Accutane/Dopamine/Prolactin link. It looks like a few posters have actually taken this and ran with it... so I should have been commenting alongside. After all I’ve been going down this path ever since myself…
From that post forward I've realized first hand that things would seem a lot more complicated than simply taking L-DOPA to restore Dopamine levels, lower Prolactin, free up Testosterone, etc. L-DOPA is obviously extremely powerful and it’s been challenging (to say the least) to harness/maintain the highs of it without a myriad of symptoms - and what comes across like a burnout of the Dopamine receptors (leading to a sexual crash). I can only seem to keep the wonder benefits of L-DOPA with me for a week or two at a time, before falling off and giving way to frustrating symptoms. Cycling off for a while and coming back on will allow for that week or two of pleasantry again – but it always carries the same crash and burn - so there’s obviously more at play.
Of note I'm still very much convinced today, that Accutane alters the Dopamine receptor D2 gene. To the point where I’m beginning to wonder if it somehow desensitizes it during the course and after:
My advice to any Accutane users that still have lingering sexual sides (lack of sex drive, ED) is to get your Prolactin level tested. Even if its within normal range, you have to understand that it shouldn’t be even be mildly elevated for a sustained amount of time. Mine was 9 (I think normal was <18) and it was wreaking havoc on me badly. From ED, to lack of sex drive, zero aggression, dull intelligence and ability to connect information, there was a lot there I could go on. I’ve read stories of numerous examples of the same. Hell one guy at Prolactin=10 had his nipples leaking. I didn’t have this but my nipples were most definitely puffy and hyper-sensitive (did not like to be touched).
Again I want to reiterate that I believe the elevated Prolactin in this case would be due to decreased dopamine levels/dopamine receptor sensitivity (two different things *I think* and I’m really not sure if it’s one or both of those things yet but will get to that later). However and as I mentioned earlier if only it was that simple…
While taking Accutane it seems to play hardball with neurotransmitters in general. It fiddles with Dopamine and we know that, but it also fiddles with Serotonin:
If you think about it, this is where all of the crazy symptoms that may come with Accutane come into play. Stories of suicide, complete personality changes, etc. etc. I will use my particular example to explain how this drug toyed with my neurotransmitters at the time of taking it.
So we know that Serotonin = satisfaction neurotransmitter, and Dopamine = desire
While on Accutane I had a complete personality change. I turned into a completely different person. Essentially I went manic – crazy for highs, confident, full of energy, mass spending habits, unbelievable sex, detached from risk, detached from what made me who I was before (family), etc. This was cloud 9 on speed in a nutshell. Where did that come from? I’m confident that is Accutane playing with Dopamine receptors.
Vice versa about 6 months into my course, when I had my complete and utter collapse (and have never recovered), I was the complete opposite of all of the above. I returned not only to who I was before, but many many steps below in terms of depression, anxiety, inability to have sex or be interested in sex, sleeping issues, etc. That my friends was a complete crash in Serotonin. And I would be willing to bet my Dopamine receptors were fried at this stage to boot.
So where was I left at this stage? Well let’s put it this way as I said I’ve never really recovered. So I picture this huge leftover bloody warzone when it comes to my neurotransmitters. You have to remember these things are SUPPOSED to balance each other out. There’s a ratio that should always be there and if Dopamine goes up, Serotonin should go down and vice versa. Prolactin is tied in as such that taking Dopamine lowers Prolactin and Serotonin, Taking 5HTP for example should lower Dopamine but also raise Prolactin.
Here’s the part that I’ve been dealing with ever since my first post about this connection. I don’t know where my neurotransmitters and their subsequent levels stand and I don’t know how to balance them again either. I know both are low, but somehow Prolactin is still elevated (you would think my Serotonin would then be high – but it’s not). I know Dopamine is low because when I get Dopamine and it works for that 1-2 weeks it’s a hell of a feeling of rejuvenation. However I realize quickly that I need Serotonin because it depletes existing Serotonin that is low already (depression/sleep apnea/etc.). So you would think to just add 5HTP right? Well adding that completely numbs all sexual benefits of L-DOPA, why? Because the 5HTP is also raising prolactin even more.
I’ve proven through trial and error that I need both of these things desperately, meaning L-DOPA/5HTP. When I take a straight course of L-DOPA, I lower Prolactin and for 1-2 weeks I’m going strong in all areas but then depression creeps in along with sleep issues (as well as anger/rage). This is lack of Serotonin creeping in. Whereas with a trial of just 5HTP, I get a mood boost I’ve never had for some time, my dreams come back at night whereas I haven’t remembered dreams for years, and my sleep apnea improves. Unfortunately it drops Dopamine and raises Prolactin resulting in all of the sexual benefits, desire to win in life, removed. Keep in mind I have tried all dosages of these things, from minimal to high, it always ends in the same result. Combining the two (taking L-DOPA in the AM / 5HTP at night) does not work either. 5HTP always nulls L-DOPA, no matter what the ratio.
And I think that’s because I’ve been left with a messed up ratio between the three… I’m beginning to ramble here but it feels like post-Accutane I’ve been left with an elevated Prolactin level, low Dopamine AND low Serotonin levels. In a healthy human being I’m guessing an elevated Prolactin level should only occur when Serotonin is raised and Dopamine is lowered. So the consequence of this is that taking 5HTP will help with mood/sleep but raise Prolactin more, resulting in all of the disadvantages associated with that. Whereas taking L-DOPA will deplete Serotonin even further and we all know the issues associated with that – and I can tell you it’s a state of anger/rage without any satisfaction and horrible sleeps.
So here I am pondering next steps to address this problem. Other issues with L-DOPA include that it depletes other key ingredients in the equation (thus here we will take one major step forward, many steps back):
So from there I have been looking into LJ100 (Tongkat):
What I have yet to determine is if Tongkat is really any different from L-DOPA. If it acts in the same manor and produces the same result than it will cause the exact same issues (or similar) that L-DOPA has. And perhaps it will not be the answer.
Instead – and I know there has been some comments on thread recently – I have been tempted to try a Dopamine agonist. And when looking at the differences between say for example Caber vs. Prami, Pramipexole may be of much more benefit to those affected like myself because of some of the reasons underlined below:
So this is where I leave off for now. I’m not sure of my next approach but this is my experiences to date and current train of thought. If I do decide to try Prami, I need to understand the full sides of it because I’ve heard of some dangers involved there. So I’m most definitely not recommending it to anyone at this stage.
OF NOTE: I should point out that I have confirmed that this is not a Thyroid issue in my case (complete testing with RT3). Testosterone was adjusted and wasn’t addressing the issue. SHBG would just drive up. Nor is it a case of missing Vitamin/mineral C (using liposomal), Vitamin D3 (using high dose sublingual), low B vitamins (taking including high dose B12 sublingual), low iron, low Cal/Mag. DHEA would aggravate sleep conditions. I tried it all. The only thing that has worked has been playing on my Dopamine levels.
Open to feedback, good luck everyone, and hope to come back soon….
get a spectracell micronutrient test, you may be depleted in glutathione. what you don't realize is that oxidative stress can damage dopamine. it takes a long time to make a difference, but you would be wise to check your methylation genes.
when you fix your mood you will fix sexual issues, as they are intimately intertwined.
Hey matty, this link could be of interest, If you haven't seen it already:
check out page 5, could provide a basis for paulo's recent success pushing dopamine in the other direction?
the last post on this thread could also be of interest
Gynecomastia: a rare complication of isoretinoin?
The author mentions this is the third reported case of gynecomastia linked to isotretinoin/Accutane
I know of a person on this forum who mentioned developing gyno after Accutane.
Make that 2 people...
The effect of genetic polymorphisms of RARA gene on the adverse effects profile of isotretinoin-treated acne patients.
I can't express how happy I am to have found this thread and a few others elsewhere like it. It has given me hope that maybe someday there will be a chance for me to lead a normal life again someday. Not positive if this is the place to put my story but I felt any information may be helpful in some way.
I am now 32 and was a very healthy young adult growing up. Athletic, muscular build, great endurance, good sex drive, lettered in 3 sports , yada, yada.
Anyway, I started taking Tane when I was about 16 for some bad acne I had. Cleared things up fast and despite the typical side's I was happy with the results (other than the extremely annoying MASSIVE sweating problem I started having about a month into it and never stopped having, sweat from the head and face and back and nowhere else, not under the arms not the feet, still to this day, which I still find odd).
Not long after getting off of it I was hit with crushing depression for awhile. No rhyme nor reason to it, just fits of crying and feeling hopeless out of nowhere. Plagued me ever since but I didn't pay much attention to it as long as I was still functioning halfway properly. Then once I hit around age 21 I realised my energy lvls were dropping rapidly. I worked out 5 days a wk, 75 mins a day for years and all of a sudden I couldn't keep it up. I could do the same weights but over the course of a hr I was doing half the reps and felt like I had been run over. Soon after then I took a job out in the boonies where I couldn't work out anymore (remote TX where lifting a natural light is considered a workout) and thought nothing else of it.
Cut to a couple years later and I am weak and tired and exhausted ALL (100%) the time. I would literally come home from work, fall asleep in the car in the driveway, wake up take a shower and drive back to work a couple times a wk. I had trouble waking from bed even after setting 3 alarm clocks and no amount of sleep could make me feel rested. I would get off on friday and sometimes sleep for 16-20 hours, get up a couple hours, then sleep another 16-20 hrs til time for work again.
This got worse and worse over the years and I started searching for what could be wrong. i ate healthy and clean, took proper supplements (the basics) I ran thyroid panels on my own, all in normal range. I got a test for anemia and diabetes all clear. I found an Adrenal fatigue specialist and followed a porgram for 6 months until i couldn't affor dit any longer since I was receiving no results (except a slight pick me up from the large quantities of vit-c which I kept taking) I tried different supps, nothing worked. I decided to get my T tested at age 29 and had to beg my Dr to do it, who said "your too young, too muscular and have too much facial hair to possibly be low on T".
Well the range for the test was between 300-950 somewhere in there and my test came back 180. He was some GP who wanted to start me on shots of 100 monthly which i researched online and found to be inadequate (100cc? sorry dont remember the measurment) and I found an online Low-T clinic that had me on 300 every 5 days with 2x 500mg HCG wkly also. I thought this was a little high and I could tone it down later, but whatever I needed to get my life back ASAP. I got a 3 month supply and made it through 2 months with absolutely zero results (except a much improved libido which until that point I hadnt noticed I had lost so much due to the extreme fatigue) and was fired for falling asleep on the job on my lunch break... I was shocked when it didn't work.
Being fired I couldn't afford a test to see where I was at that point just for reference. I took the last months supply still with no improvement to my shock. Now I am broke living with a parent and have gotten so weak I do not see how I can work. I sleep up to 20 hrs a day and can't make myself get the strength to do the tiniest task such as showering and cleaning the house. It's a disgrace and embarassment to go from being an all-state athlete to not being able walk around the block without wanting to black out. Again all test but LOW-t were normal and cortisal was slightly low on Pm , high on AM.
I had brief success with L-dopa and as someone else mentioned here got temporary results with it but they faded after a week or two. GABA helped my sleep for awhile then I became immune to it also. I also got prescribed adderall in an attempt to see if that would help with the brain fog and it helped a lot for about one wk, with focus and energy not just mental clarity (I felt like a human being again for a moment), then after a month I was doubling the dose and getting little to no effect so I jumped off that ship before I got to taking an unsustainable amount.
At this point I am a walking corpse and most of my own family seem to think it's somehow "in my head". I can see how this leads to so many suicides being sick with something tearing you apart yet you look fairly normal from the outside. My symptoms are chronic headaches, extreme never ending soul-crushing fatigue, high-BP, metabolism has screeched to a halt (and no not just because I'm a little older, I have discipline and have been counting every calorie, eating costco's worth of tuna fish and chicken breast as long as I can remember and still cant shed a pound). Brain fog is awful and I have recently started with panic attacks and started getting bad anxiety not long after starting Tane in the first place. I've tried all kinds of pills for adrenals raw glands, heaps of liquid Vit-C, and 5 million more things I'm not even mentioning for adrenal health among other things.
Of all the sites I've read about people suffering with Tane problems it's like I'm reading something I've already written. I hope somebody gets this figured out soon for all those suffering out there who don't even have a clue what is causing it, as well as those out there like me, who have been for years blowing every penny I made just trying to feel like a human being again.
Please Keep digging into this people and thanks for your efforts thus far!
RunningOnEmpty : I took propecia and our problems may be different. But similar symptoms. You need to test your free cortisol and estrogens along with blood cortisol. Free cort is tested via siliva. You also need to test shbg.
Did you get any relief with the testosterone in the first week?
You can follow me on youtube http://www.youtube.com/user/vvdv82/videos I am trying to fight my problems.
I have been speaking to a guy who took accutane he also had problems with estrogen.
I have had many e2 test done and have always been in the normal ranges. I had it tested while on T and also had experience with it at very low levels, just in case to see if my body responded, with inhibitor and no change, actually got worse as should be expected. test did nothing whatsoever to me except 2 things. Libido steadily climbed up from wk 1 until about wk 5 and topped off Very high, so high it was an actual problem. I also got some rage problems due to the T. I pulled my car over and jumped out and chased a man who cut me off and flipped me the bird. Needless to say that scared the shit out of me a little later when I thought it through and realised I wasn't in control of myself anymore.
My workouts did improve slightly though. I still felt bad as ever except I was stronger. No change for quality of life at all, but my muscles felt "fuller" while working out.
Ok that sounds a bit different to propecia guys. None of them get any real libido benefit from T. If they do its only in the first week or so. Keep on doing what you can. There has to be a explanation for your severe fatigue. Test all you can and keep researching and reading.
Sorry for the late reply Darran I know I go away for long periods of time.
But I appreciate the link...
Listen guys I want to modify my recent theory on dopamine - I think while dopamine is impacted and has a lot to do with the sexual symptoms we have - I now believe a blockage in the methylation cycle (involved in the production of dopamine) is the actual cause of issues in my case.
I've taken my hunt to the 23andme thread if anyone cares.
A young woman who experienced long-term sexual and mental side effects from Saw Palmetto which worsened severely after taking Accutane:
She has been on a social media campaign for raising awareness.
Separate names with a comma.