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Everything affect epigenetics.. it's a natural body adaptational response, it persist only if the environment doesn't come clean/stay the same. Accutane just cause a very deep vitamin A imbalance mixing 100 fold excess and deficiency at the same time (since isotretinoin is also a retinoid inhibitor (1 ; 2), and also because of liver & glandular damage who prevent homeostasis.
I talked about extra and intra-cellular environment. Yes it can last for a long time or permanently, if the imbalance is too deep or not addressed. And it's not since i managed to fix most of the issue. Problem isn't epigenetic, that's the symptom, problem is vitamin A, and you didn't tried to address it, at least not enough. I thought everything i did about diet, detox etc. was enough, but now i'm 100% sure that if i didn't took vitamin A back, i would have never reached past ~50% recovery (and 0% if i didn't do any detox at all). Talked about beta carotene in the past here, but now i'll say it's better low dose retinol, 70% acetate 30% palmitate.
It doesn't persist for generation, not in the case of accutane, and if it was, it would lead to malformation and child death.
Anonyy - with all that you've done to recover, how is the moisture in your body??
Mine is extremely dry still and I worry that will never change. Most people will say take "Baxyl"
but ive tried it and it didn't do much.
Anything you can offer in this area?
Also what is the best form of Vit A to start supplementing with?
Brand and type pls?
thank you
Now it is good, little dry if i eat very trash food but it last only 20 minutes. You need to repair the intestine for that, both are linked (internal & external skin/barrier), we see it in acne.
I can't advise vitamin A if you didn't detoxed before, you'll only damage further your liver. Maybe if you try no more than 1000IU it will be ok. I say that but if you have a strong liver you can take high dosage with no issue even if after accutane it seems less likely.
46 minutes ago, anonyy said:Now it is good, little dry if i eat very trash food but it last only 20 minutes. You need to repair the intestine for that, both are linked (internal & external skin/barrier), we see it in acne.
I can't advise vitamin A if you didn't detoxed before, you'll only damage further your liver. Maybe if you try no more than 1000IU it will be ok. I say that but if you have a strong liver you can take high dosage with no issue even if after accutane it seems less likely.
I've done 5 liver/gallbladder flushes. Anything else I should do first??
Which form of Vit A should I be looking for??
I also practice yoga,jog and workout which I know helps all processes throughout the body!
On 8/25/2016 at 8:04 AM, TrueJustice said:I've done 5 liver/gallbladder flushes. Anything else I should do first??
Which form of Vit A should I be looking for??
I also practice yoga,jog and workout which I know helps all processes throughout the body!
Well before liver/gallbladder flushes you should do colon cleanses so all the toxins you want to flush won't stuck there.
In terms of digestive issues what SEEMS to help my is flax seed oil and amol
[Edited link out]
It's an old herbal medicine, safe and good for many purposes
On 8/25/2016 at 4:16 AM, anonyy said:Since side effects can't be prooven biologically according to modern "science" don't hope to fix the issue by waiting it making news, it did multiple time, nothing changed. The only way to stop this is to promote real medicine, and attack the core of this drug dealer "modern" "medecine" which is the issue, and not bury our head like you do & whine all day while also rejecting anything that you can't understand about how to fix health issues. You are closer to the side of those who sold you accutane, than health.
If you want to make news, buy some guns on the darknet (noneed if u are american ofc)and go in a roche lab for example. You need to go through the end of what you look for, health? then stop whine and heal yourself;hate whine and revenge? then do it. cannot choose both.
Seriously, I wonder how hard or impossible it would be to create a foundation like this: [Edited link out](the post-finasteride syndrome foundation). Victims of finasteride have been successful in getting some recognition and studies done into their condition. We should attempt to replicate their success.
On 8/18/2016 at 3:30 AM, HumaneCyclone said:Could you or someone else explain this to me? In my opinion, the telomere theory isn't something we should be worried about. Yes, Accutane suppresses the action of telomerase, but telomerase is only active in germ cells in an normal adult. The only case where this is different is when someone has cancer, and in this case, the telomerase gene is turned on and allows the telomere of the cancerous cells to never shrink (part of the reason by cancer cells don't die off on their on and continue growing/spreading). If telomerase were active in all somatic cells of a human, then we would never age due to the fact that our DNA would never reach that point in which it can't be transcribed into RNA then translated into a useful protein. To my knowledge, Accutane (or retinoic acid in general) doesn't affect the telomereitself, therefore, there really shouldn't be a reason to be worrying about the protection of our DNA (in all cells other than germ cells). Unless I'm missing something, I truly do not believe the telomere theory is something to worry about. On a side note, I bolded the suffixes of the telomere/telomerase not to be condescending but just for clarity.
There are apparently tests for telomere length that can be done (for example: [removed]). I wonder if it might be worth it to try to get one?
18 hours ago, TrueJustice said:I've done 5 liver/gallbladder flushes. Anything else I should do first??Which form of Vit A should I be looking for??
I also practice yoga,jog and workout which I know helps all processes throughout the body!
Level up your vitamin D levels before taking vitamin A, with sun, supplement only very low effectiveness (for me at least).
Palmitate is too hard on the liver for me, acetate is far better for that but it cause a more rapid blood spike, so try no more than 2500 IU at the beginning i'll say. I personaly take acetate most of the time, and sometimes palmitate, and rarely beta-carotene.
2 hours ago, cnb30 said:Who here gets weird tingling sensations deep inside their head, and feels something like a vibrating blood rush from time to time (also inside your head in the same place)? Also, I get some kind of bloody fluid taste in the back of my mouth when that happens
That sounds like a stoke I would recommend cayenne pepper extract.
Hi guys,
I posted in this thread a couple years ago, my symptoms were mostly about constipation, cognitive deficits and fatigue. Here's what works for me. The cognitive deficits and fatigueare90% under control if I take enough methyl donors. So Trimethylglycine, Creatine, Methylfolate, MethylB12, P5P, NAC, all work to some degree. Personally I find Trimethylglycine second most effective, cheap, and easy to consume (tastes a little sweet). Creatine was most effective, but made my hair fall out, or at least that was my perception. Dosage for Trimethylglycine would be a teaspoon of the powder twice a day. More Information here: https://examine.com/supplements/trimethylglycine/
My digestion is unfortunately still troubling me. I got it working for some time and then at some point symptoms reappeared. Imho it's all about intestinal permeability, also called leaky gut. Glutenfree is necessary and helpful but not sufficient in my case.I haven't benefitted from pre- or probiotics.
3 hours ago, bamdaze said:Hi guys,
I posted in this thread a couple years ago, my symptoms were mostly about constipation, cognitive deficits and fatigue. Here's what works for me. The cognitive deficits and fatigueare90% under control if I take enough methyl donors. So Trimethylglycine, Creatine, Methylfolate, MethylB12, P5P, NAC, all work to some degree. Personally I find Trimethylglycine second most effective, cheap, and easy to consume (tastes a little sweet). Creatine was most effective, but made my hair fall out, or at least that was my perception. Dosage for Trimethylglycine would be a teaspoon of the powder twice a day. More Information here: https://examine.com/supplements/trimethylglycine/
My digestion is unfortunately still troubling me. I got it working for some time and then at some point symptoms reappeared. Imho it's all about intestinal permeability, also called leaky gut. Glutenfree is necessary and helpful but not sufficient in my case.I haven't benefitted from pre- or probiotics.
Interesting. I'm going to get one of those genetic tests which I hope will show if I have idiosyncracies with methylation, and I think it would be interesting to see if those of us with the post-Accutane syndrome tend to have any specific genetic abnormalities (as some of the guys who took propecia seem to think).
Have you by any chance tried any other dietary changes, such as minimizing excess fats and oils in your diet? This is just an observation, but I notice if I eat what is basically a plant-based diet with little extra fat I tend to not have any digestion issues (in fact, one of the only symptoms of mine that can be kept completely under control through lifestyle changes). Although it might be that in my case this helps so much because I had to had have my gallbladder removed shortly after taking Accutane, and I think my body's ability to create bile and digest fat may have been impaired.
18 hours ago, cnb30 said:Who here gets weird tingling sensations deep inside their head, and feels something like a vibrating blood rush from time to time (also inside your head in the same place)? Also, I get some kind of bloody fluid taste in the back of my mouth when that happens
Oh boy, yes, I do have all kinds of weird, tingly physical sensations, many of which are difficult to describe (though not of course as much as the cognitive/emotional/personality symptoms in my case - suffice it to say it kind of feels like I'm a different person, as if I had a brain transplant due to all that). In answer to your question, although I usually don't notice it, I think I do have a sensation of fluid rushing in the back of my head. It's more in the back of my head though, rather than deep inside of it, and I haven't had any taste of bloody fluid though.
The most obvious and intrusive physical sensations in my case are:
1) This constant feeling of muscular tension all over my body, and especially in my head, face, mouth, and throat...Overall, it feels like my muscles are always "locked up" and my body is never relaxed like it could be before Accutane.
and
2) Sensations associated with breathing: I realize how odd it sounds, but I have this feeling of tension in or around my diaphragm, and this constant abnormal awareness of my own breathing. It feels like my body can't just unobtrusively and unnoticeably breathe deeply anymore.
Does anyone else have anything like this?
I wonder if these are partly due to impaired GABA? I have a doctor's appointment today, and I think I'll ask if I can try a medication like baclofen to see if it makes any difference (and update this accordingly if it does, in case it might help anyone else).
I'm not sure if these sensations are harmful in and of themselves, but they're usually excruciatingly frustrating because of how intrusive and distracting they can be. Second only to the cognitive effects themselves, the breathing sensation especially feels like it can really impair my concentration. In general my mind seems like it's locked into a state of being too aware of my body and these weird physical sensations.
43 minutes ago, john86 said:Oh boy, yes, I do have all kinds of weird, tingly physical sensations, many of which are difficult to describe (though not of course as much as the cognitive/emotional/personality symptoms in my case - suffice it to say it kind of feels like I'm a different person, as if I had a brain transplant due to all that). In answer to your question, although I usually don't notice it, I think I do have a sensation of fluid rushing in the back of my head. It's more in the back of my head though, rather than deep inside of it, and I haven't had any taste of bloody fluid though.The most obvious and intrusive physical sensations in my case are:
1) This constant feeling of muscular tension all over my body, and especially in my head, face, mouth, and throat...Overall, it feels like my muscles are always "locked up" and my body is never relaxed like it could be before Accutane.
and
2) Sensations associated with breathing: I realize how odd it sounds, but I have this feeling of tension in or around my diaphragm, and this constant abnormal awareness of my own breathing. It feels like my body can't just unobtrusively and unnoticeably breathe deeply anymore.Does anyone else have anything like this?
I wonder if these are partly due to impaired GABA? I have a doctor's appointment today, and I think I'll ask if I can try a medication like baclofen to see if it makes any difference (and update this accordingly if it does, in case it might help anyone else).
I'm not sure if these sensations are harmful in and of themselves, but they're usually excruciatingly frustrating because of how intrusive and distracting they can be. Second only to the cognitive effects themselves, the breathing sensation especially feels like it can really impair my concentration. In general my mind seems like it's locked into a state of being too aware of my body and these weird physical sensations.
Yes have had the breathing problem you describe. For me it felt like I could never have a relaxed inhale and exhale, it was interrupted by quick little gasps for air. Weird. It went away last year sometime
Yeah, that's exactly what I have, including also the constant urges to gasp for air. Definitely weird and hard to make sense of; Like I often wonder if I can somehow control it mentally or ignore it through some relaxation technique. If so, I haven't been terribly successful.
12 hours ago, bamdaze said:Hi guys,
I posted in this thread a couple years ago, my symptoms were mostly about constipation, cognitive deficits and fatigue. Here's what works for me. The cognitive deficits and fatigueare90% under control if I take enough methyl donors. So Trimethylglycine, Creatine, Methylfolate, MethylB12, P5P, NAC, all work to some degree. Personally I find Trimethylglycine second most effective, cheap, and easy to consume (tastes a little sweet). Creatine was most effective, but made my hair fall out, or at least that was my perception. Dosage for Trimethylglycine would be a teaspoon of the powder twice a day. More Information here: https://examine.com/supplements/trimethylglycine/
This is interesting, what dosage of TMG are you taking? There is no doubt methylation is compromised in people suffering tane sides, but actually tackling the issue seems much more complex than it would seem initially, and few people have probably been successful with this.
I've been starting with following Freddds protocol which has been tried, and found successful, with many CFS suffers (a similar condition to ours).
A number of times I've had glimpses of normally when taking supplements such as choline and inositol (Now brand 500mg), but they have only been short glimpses and have always felt like something runs out. This is probably down to methyl groups running out looking back, and this why I've decided to go with the Freddds protocol.
So far I'm fine on an active B-complex, fine with MB12 (this improves mental clarity), but get bad fatigue with taking AB12 which stops when I stop taking it. I'm assuming you take an active B-complex as a basis?
Some excellent information here, and links to Freddds protocol.
Little update: Awhile ago I posted that I was going to start taking Allochol, a herbal assortment pressed into a tablet which is known for dumping bile, Its popularin Russia/Ukraine and among bodybuilders apparently. I took 8 of these tablets a day, for 2 weeks with no dramatic results as Ive read its meant to make you dump bile quite intensely. However, know I have noticed that when I do consume a lot of fat in my diet, my gums (yep gross) don't bleed, and this was a consistent pattern after fat/alcohol or worse with both. So ive ordered another 3 packets, that should give me around 2.5 weeks on the stuff. Its a simple theory, but accutane obviously can cause dramatic damage to the liver, this product can attempt to reverse that. Perhaps a fatty liver + 5ari are the pinpointed roots here. Anyway, this is just what Ive been thinking about lately.
On 8/25/2016 at 10:41 PM, john86 said:Seriously, I wonder how hard or impossible it would be to create a foundation like this: http://www.pfsfoundation.org/ (the post-finasteride syndrome foundation). Victims of finasteride have been successful in getting some recognition and studies done into their condition. We should attempt to replicate their success.
John, our side effects can absolutely be proven biologically by modern science. In fact, this could have been done with the level of biotechnology that existed ten years ago. The ultimate purpose of [removed] is to establish initiative and funding for scientific research into our seemingly permanent side effects, whether it be through crowd funding or by joining-up with organizations like the PFSF. The site was built because there is no hope if we continue as is.
17 hours ago, tanedout said:This is interesting, what dosage of TMG are you taking? There is no doubt methylation is compromised in people suffering tane sides, but actually tackling the issue seems much more complex than it would seem initially, and few people have probably been successful with this.I've been starting with following Freddds protocol which has been tried, and found successful, with many CFS suffers (a similar condition to ours).
A number of times I've had glimpses of normally when taking supplements such as choline and inositol (Now brand 500mg), but they have only been short glimpses and have always felt like something runs out. This is probably down to methyl groups running out looking back, and this why I've decided to go with the Freddds protocol.
So far I'm fine on an active B-complex, fine with MB12 (this improves mental clarity), but get bad fatigue with taking AB12 which stops when I stop taking it. I'm assuming you take an active B-complex as a basis?
Some excellent information here, and links to Freddds protocol.
I'm taking a teaspoon of the powder twice a day. Not sure how much that is in grams, I guess 5-10g. I too noticed improved mental clarity on MB12, didn't try AB12. I'm taking MB12, MFolate and P5P once or twice a week for insurance basically and because I still have some left, but I don't notice any profound effect anymore in contrast to TMG or Creatine. Dead giveaway for functioning methylation is my sense of smell being very sensitive, i.e. my sinuses being clear. Can't remember to ever have had such a good sense of smell. Also my hair doesn't get greasy anymore and my skin looks great.
WIth methylation there seems to be indeed no one-size-fits-all approach so it is necessary to experiment.
On 26.08.2016 at 3:36 PM, john86 said:Interesting. I'm going to get one of those genetic tests which I hope will show if I have idiosyncracies with methylation, and I think it would be interesting to see if those of us with the post-Accutane syndrome tend to have any specific genetic abnormalities (as some of the guys who took propecia seem to think).Have you by any chance tried any other dietary changes, such as minimizing excess fats and oils in your diet? This is just an observation, but I notice if I eat what is basically a plant-based diet with little extra fat I tend to not have any digestion issues (in fact, one of the only symptoms of mine that can be kept completely under control through lifestyle changes). Although it might be that in my case this helps so much because I had to had have my gallbladder removed shortly after taking Accutane, and I think my body's ability to create bile and digest fat may have been impaired.
Yes,I've tried various dietary changesbut haven't sticked to anything except gluten-free,whole food. I try to eat balanced mealsand take Taurine occasionally which supports bile function, so I suspect my fat digestion is probably somewhat impaired, too.
As for other supplements I also take Magnesium, Vit D, Vit K2 and Zinc occasionally which improve myenergy levels. Doesn't work every time though, so I guess sometimes they are bottlenecks and sometimes something else is. Vit A doesn't affect me in any way.
Also benefitted from going pornfree/nofap.
On 8/27/2016 at 5:08 PM, Dubya_B said:John, our side effects can absolutely be proven biologically by modern science. In fact, this could have been done with the level of biotechnology that existed ten years ago. The ultimate purpose of [removed] is to establish initiative and funding for scientific research into our seemingly permanent side effects, whether it be through crowd funding or by joining-up with organizations like the PFSF. The site was built because there is no hope if we continue as is.
Thanks for creating that web site, by the way! It's a great idea, and I just joined it last night.
Perhaps this is a silly thought, but I wonder if there are any doctors or scientists that might be able to somehow lend support to our cause? I remember, for example, in the news there was one poor kid who commit suicide, and his father was a doctor who was adamant that Accutane caused it (though maybe I'm remembering the details wrong).
Also, has anyone by any chance had a genetic test (such as by 23 and me)? To restate the obvious, one of the questions that might be asked is why only some people develop such permanent side effects from isotretinoin, and perhaps there's some methylation or genetic anomaly that could be associated with it. Most undoubtedly escape unscathed, although whether their overall health or incidence of disease is impacted later on in life remains to be seen.
I'm having another one of those days where I feel like someone high up with Roche needs to be hurt. Like REALLY need to be. After all, they are getting away with not only murder, but are making money off of it as well. They have damaged my very existence and sentience and don't even acknowledge they have done so, let alone apologize, especially because I was lied into my death in the first place.
9 hours ago, john86 said:Thanks for creating that web site, by the way! It's a great idea, and I just joined it last night.Perhaps this is a silly thought, but I wonder if there are any doctors or scientists that might be able to somehow lend support to our cause? I remember, for example, in the news there was one poor kid who commit suicide, and his father was a doctor who was adamant that Accutane caused it (though maybe I'm remembering the details wrong).
Also, has anyone by any chance had a genetic test (such as by 23 and me)? To restate the obvious, one of the questions that might be asked is why only some people develop such permanent side effects from isotretinoin, and perhaps there's some methylation or genetic anomaly that could be associated with it. Most undoubtedly escape unscathed, although whether their overall health or incidence of disease is impacted later on in life remains to be seen.
Thanks for Joining!
Actually, it was a PFS guy who created the site. I only helped with some of the functional design and layout, debugging, and administration duties. Took_Accutane from the All Things Male Accutane forum provided much of the blog content and provided a ton of input into design. We had a few others from the PSSD and post-Lupron communities helping out along the way. Hopefully they will return once things get moving in the right direction.
And yes, there was one group of scientists who showed interest in performing a pilot study on several post-Accutane patients if we could come up with the funding, (estimated to be only in the tens-of thousands of USD range, from what I heard) but that was over a year ago. We need to somehow show that there is still enough interest among us and the families of those affected to help to support and take part in research.
The father of Jesse Jones, who committed suicide due to Accutane side effects, made the Dying for Clear Skin documentary but he is not a doctor. Perhaps you are thinking of Dr. John Santmann from the PFSF, whose son committed suicide after taking dutasteride?
Unfortunately, 23andMe doesn't provide full genome analysis, they only provide information based on snps (common point mutations at certain locations) detected in a portion of deciphered human genes and match those snps to genotypes associated with certain diseases. Not impossible, but we would be hard-pressed to find the answer through their service and would need someone with knowhow to interpret the data collected from many many post-Acutane patients to even begin. Worth the ~$100 for the analysis IMO though.
17 hours ago, Dubya_B said:Actually, it was a PFS guy who created the site. I only helped with some of the functional design and layout, debugging, and administration duties. Took_Accutane from the All Things Male Accutane forum provided much of the blog content and provided a ton of input into design. We had a few others from the PSSD and post-Lupron communities helping out along the way. Hopefully they will return once things get moving in the right direction.
Nice! For what it's worth, feel free to ever let me know if you need anyone else to help.
17 hours ago, Dubya_B said:And yes, there was one group of scientists who showed interest in performing a pilot study on several post-Accutane patients if we could come up with the funding, (estimated to be only in the tens-of thousands of USD range, from what I heard) but that was over a year ago. We need to somehow show that there is still enough interest among us and the families of those affected to help to support and take part in research.
That's good to hear, in that it's definitely a tall order, but at least it's not like hundreds of thousands or millions of dollars. Not that this would be possible for at least a couple years, but if I were to get a job that pays sufficiently, I know I'd be willing to pretty much donate all my disposable income to such an endeavor.