myelin sheath. This is what the nerve cells bathe in and are normally protected by. This could be the source of chronic inflammation. Its coming from the nerves themselves. This myelin sheath might be damaged. This nerve pain could happen anywhere and feel like bone pain when it might not be. This can happen basically anywhere in the body at any given time. The back, hips, Head, your little muskie. Our nerves are not protected as they should be. This would lead to inflammation in the surrounding areas. This could also be the source of eye floaters. you also have nerves in your gut. if these are inflamed it could possibly lead to gut dysbiosis. At its most mild it might barely be noticeable at times. At its worst this could equal the intense facial flushing or brain on fire feeling. or a throbbing, burning pain. This inflammation would cause surrounding tissues to swell which could lead to the ear fullness, chronic sinus, and breathing problems. I feel like I might be close to piecing alot of this together. Just wanted to post these thoughts.

6 hours ago, cnb30 said:

Does anyone here get like mini seizures in the back of their head and feel really awkward and twitchy (like when you turn your head you just twitch it in different directions)?

yes

On 8/14/2016 at 5:15 PM, sam1w2e said:

For the first month I was taking 12 capsules a day, equivalent to around 35,000IU of vitamin A.

id be real careful about this. its like drinking hard liquor. You dont notice until its too late. Ive taken high dose vitamin a in the past on two different occasions. First time gave me alot of extra fine lines in my hands and hard calcium deposits right below my fingers that have been there ever since. Second time gave me eye floaters, they havent left either. and this was years ago.

On 8/17/2016 at 9:21 PM, ACCUiTy_drANE said:

.....A lawsuit brought against Roche a few years ago revealed internal studies conducted by Roche that demonstrated how Accutane can erode the intestinal tract. ......

Amazing. Can you provide a source?

On 8/19/2016 at 10:53 AM, Dubya_B said:

On 8/18/2016 at 9:21 AM, ACCUiTy_drANE said:

.....A lawsuit brought against Roche a few years ago revealed internal studies conducted by Roche that demonstrated how Accutane can erode the intestinal tract. ......

Amazing. Can you provide a source?

He's right! I actually think I posted links a long time ago on the NJ trials, You can watch trails if you pay a certain amount. though roche has gotten out of paying in appeals etc. Big Hollywood stars have testified. [Edited link out]

http://finasteridesyndrome.blogspot.co.uk/p/how-to-treat.html

This article includes a list of tests that might also be useful for those with accutane sexual sides.

If more people got these tests, we might get a better picture.

Seems these are standard for pfs and you can view their results over on the propecia site.

Just perusing through the clinicaltrials.gov website. I'd say Isotretinoin (Accutane) is referred to as a main chemotherapy agent in about 80% of the trials and "anti acne" in only about 20%. Most doctors are actually using it to treat cancers of all kinds (kidney, skin, liver, cervix). Yay. Let me copy paste some studies that I like: 
 

Effects of Isotretinoin on The Gonads and Hirsutism (August 1, 2016)

 
Purpose

Combination Chemotherapy and Surgery With or Without Isotretinoin in Treating Young Patients With Neuroblastoma

Purpose

RATIONALE: Drugs used in chemotherapy, such as carboplatin, cyclophosphamide, etoposide, and doxorubicin hydrochloride, work in different ways to stop the growth of tumor cells, either by killing the cells or by stopping them from dividing. Isotretinoin may help neuroblastoma cells become more like normal cells, and grow and spread more slowly. Giving combination chemotherapy with or without isotretinoin before surgery may make the tumor smaller and reduce the amount of normal tissue that needs to be removed. It is not yet known which treatment regimen is more effective in treating young patients with neuroblastoma.
 

Isotretinoin Plus Dexamethasone in Treating Patients With Multiple Myeloma

Purpose

Antiacne Medications Pseudotumor Cerebri

Purpose

^^Hey look its me

Here's the link, it's full of fun stuff:  https://clinicaltrials.gov/ct2/results?term=isotretinoin&Search=Search

10 hours ago, Dubya_B said:

On 8/17/2016 at 9:21 PM, ACCUiTy_drANE said:

 .....A lawsuit brought against Roche a few years ago revealed internal studies conducted by Roche that demonstrated how Accutane can erode the intestinal tract. ......

Amazing. Can you provide a source?

Oli girl's source summed it up. Here is what I was referring to:

"The jury saw evidence of Roche studies, never published to the scientific and medical community, that Accutane's by-products damage the gastrointestinal tract and lead to degeneration and erosion of the intestinal lining -- a trigger for IBD. Significantly, those studies, which were done in animal models specifically to test the gastrointestinal safety of the drug, used exposures of the drug that were lower than those given to humans. Likewise, in the company's files but not shared with the medical community, were numerous patient reports from physicians where Accutane use triggered the symptoms of IBD, which subsided when Accutane use was terminated but then reoccurred following subsequent Accutane usage; those patients were ultimately diagnosed with IBD. Roche repeatedly determined internally that Accutane was the best or only explanation for the patient's condition. While Roche internally concluded that Accutane use was "causally associated" with the development of inflammatory bowel disease, in this trial as in others, Roche argued otherwise to the jury."

http://www.prnewswire.com/news-releases/new-jersey-jury-awards-2516-million-to-patient-whose-use-of-roche-acne-medication-accutane-found-to-cause-severe-bowel-illness-84607177.html

I have seen you make posts that elude to the vast financial power Roche has, so it should come as no surprise to you that a case against an entity as large as Roche would result in court records being sealed. Therefore, we do not have access to the studies or patient reports. I think it is telling enough that 1) Roche's own studies reached these unfavorable conclusions and 2) Roche lost such a large lawsuit in the first place. Neither of these two things happen without strong evidence.
 

13 hours ago, guitarman01 said:

myelin sheath. This is what the nerve cells bathe in and are normally protected by. This could be the source of chronic inflammation. Its coming from the nerves themselves. This myelin sheath might be damaged.

Very possible, as myelin sheath damage has been found in people previously exposed to chemotherapy drugs. It is thought to be partially responsible for persistent chemo-brain symptoms, specifically. This is why I plan supplementing with high quality Lion's Mane mushroom soon.

http://www.ncbi.nlm.nih.gov/pubmed/12675022
 

yetanother... here is that paper on the Vitamin A testing theory

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3718722/

As noted, retinoids are stored in high concentration in the liver, mainly in the form of retinyl esters, and they are normally secreted harmlessly into the circulation as RBP. However, retinyl esters can be extremely toxic if released unbound to protein. An accepted indicator of retinoid toxicity is percent retinyl esters >10% of total vitamin A [23,24]. Liver damage is a known result of excess vitamin A exposure and is associated with reduced serum retinol level but increased liver enzyme levels [25]. Retinoid-induced hepatotoxicity leads to a form of cholestatic liver dysfunction in which bile regurgitates into the circulation, raising the level of all biliary substances in the blood [26,27]. Vitamin A metabolites in bile acids also spill over into the circulation, while stored retinyl esters leak from damaged hepatocytes [28] in proportion to the total liver stores of the vitamin [29]. At the same time, plasma retinol levels decline due to impaired hepatic synthesis and mobilization of the vitamin. The hypothesized net effect is an endogenous form of hypervitaminosis A associated with an increased percentage of plasma retinyl esters as a fraction of total vitamin A, together with increased retinoic acid (RA) concentrations and low or normal concentrations of retinol and its transporter, RBP.

Reports have also suggested an association between the use of 13-cis-RA (or isotretinoin), a medication for acne, and the onset of depression, as well as psychosis and suicide in a subgroup of vulnerable individuals [33,34]. This evidence includes case reports, studies showing a temporal association between depression onset and exposure to the drug, challenge and re-challenge cases, evidence of a drug class effect, dose response, and the existence of biologically plausible mechanisms for the association [3537]. Therapeutic doses reportedly induce cognitive disturbances and depression in from 1% to 11% of patients [38].

Studies in mice also show that 13-cis-RA adversely affects learning and memory and significantly increases depression-like behaviors [39,40]. Recalling the study of Hood et al. [5], which showed that mefloquine induces oxidative stress on brain function, other reports suggest that acute and chronic vitamin supplementation of laboratory animals at therapeutic doses also leads to increased levels of markers of oxidative stress in liver mitochondria and substantia nigra, and to alterations in locomotor and exploratory activity [41]. Vitamin A supplementation at clinical doses also impairs mitochondrial function in rat hippocampus, decreases brain-derived neurotrophic factor levels and dopamine D2 receptor levels, and decreases glutamate uptake [42].

1 hour ago, tryingtohelp2014 said:

yetanother... here is that paper on the Vitamin A testing theory

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3718722/

As noted, retinoids are stored in high concentration in the liver, mainly in the form of retinyl esters, and they are normally secreted harmlessly into the circulation as RBP. However, retinyl esters can be extremely toxic if released unbound to protein. An accepted indicator of retinoid toxicity is percent retinyl esters >10% of total vitamin A [23,24]. Liver damage is a known result of excess vitamin A exposure and is associated with reduced serum retinol level but increased liver enzyme levels [25]. Retinoid-induced hepatotoxicity leads to a form of cholestatic liver dysfunction in which bile regurgitates into the circulation, raising the level of all biliary substances in the blood [26,27]. Vitamin A metabolites in bile acids also spill over into the circulation, while stored retinyl esters leak from damaged hepatocytes [28] in proportion to the total liver stores of the vitamin [29]. At the same time, plasma retinol levels decline due to impaired hepatic synthesis and mobilization of the vitamin. The hypothesized net effect is an endogenous form of hypervitaminosis A associated with an increased percentage of plasma retinyl esters as a fraction of total vitamin A, together with increased retinoic acid (RA) concentrations and low or normal concentrations of retinol and its transporter, RBP.

Reports have also suggested an association between the use of 13-cis-RA (or isotretinoin), a medication for acne, and the onset of depression, as well as psychosis and suicide in a subgroup of vulnerable individuals [33,34]. This evidence includes case reports, studies showing a temporal association between depression onset and exposure to the drug, challenge and re-challenge cases, evidence of a drug class effect, dose response, and the existence of biologically plausible mechanisms for the association [3537]. Therapeutic doses reportedly induce cognitive disturbances and depression in from 1% to 11% of patients [38].

Studies in mice also show that 13-cis-RA adversely affects learning and memory and significantly increases depression-like behaviors [39,40]. Recalling the study of Hood et al. [5], which showed that mefloquine induces oxidative stress on brain function, other reports suggest that acute and chronic vitamin supplementation of laboratory animals at therapeutic doses also leads to increased levels of markers of oxidative stress in liver mitochondria and substantia nigra, and to alterations in locomotor and exploratory activity [41]. Vitamin A supplementation at clinical doses also impairs mitochondrial function in rat hippocampus, decreases brain-derived neurotrophic factor levels and dopamine D2 receptor levels, and decreases glutamate uptake [42].

Based on this, testing the % of retinyl esters of total vitamin A would put an end to the questions in regards to whether or not we have a toxic accumulated dose in our liver.

How might this test be done? I'm in Canada and it's a shitty place for specific tests. Has anyone had it tested? Can anyone have here it tested?

Retinoids have been associated with chest pain of unclear etiology, increased serum glucose, myelosuppression and increased risk of infection.

Myelosuppression:

A condition in which bone marrow activity is decreased, resulting in fewer red blood cells, white blood cells, and platelets.Myelosuppressionis a side effect of some cancer treatments.

NAD+  and SIRT1

NAD+ seems like a mediator for retinoic acid homeostasis by activating SIRT1 which activates CRABI and CRABII.   

ways to increase NAD+   https://selfhacked.com/2015/09/06/nad-and-sirt1-their-role-in-chronic-health-issues/#Top_Ways_to_increase_SIRT1

http://www.cell.com/molecular-cell/fulltext/S1097-2765(14)00604-2

I am so sorry to hear that you are going through this. I have heard similar side effects from LOADS of people who have gone on accutane. Just the other day, I was talking to a girl who was about to go on it next month and I swear, I almost started crying. I didn't know her well enough to try to convince her not to but now I am thinking I should just send her this post. Good luck. I feel for you big time.

1 hour ago, lulularis said:

I am so sorry to hear that you are going through this. I have heard similar side effects from LOADS of people who have gone on accutane. Just the other day, I was talking to a girl who was about to go on it next month and I swear, I almost started crying. I didn't know her well enough to try to convince her not to but now I am thinking I should just send her this post. Good luck. I feel for you big time.

For the love of god stop her!!! Keep her from being murdered!!!

Just casually waiting here for my personality to come back like...

Honestly, I'm tempted to die via revenge

unless your orbitofrontal cortex can magically come back to life of course

40 minutes ago, cnb30 said:

Just casually waiting here for my personality to come back like...

Honestly, I'm tempted to die via revenge

unless your orbitofrontal cortex can magically come back to life of course

Have you tried Oxygen therapy yet??

I haven't just yet. Nothing else works though - Acupuncture/Hypnotherapy/Kinesiology/Liver Flushes/Chiropractor/Diet Changes/Anti depressants.......Nothing works!!

Might go back and try what my Doctor originally said to take when I first confronted him on my issues - just take Vitamin C......

Ha Ha Ha Ha........What fucking joke!!

Death always works... And becomes ever more tempting by the day. Quite frankly , I think that accutane would've been dealt with by now if everyone here sought revenge on the murdercorps.

Nope, not interested in any of that shit. If people want to top themselves no point coming to forum to winge about it!!

I wouldn't even bring that crap up just to seek attention. I'm about surviving and doing the best I can - that's not to say I won't tell it like it is or avoid hanging shit on Roche - That I don't have an issue with!!

If you've dealt with this crap for over 10 or more years you'll know what I'm talking about. If you've been dealing with issues for 5 years or less and keep talking about death - my advise is to snap out of it. That'll only drag things down and this forum isn't about that, never has been as far as I can tell.

Hate Roche but stay alive in the meantime - It's hard but rise above the depression otherwise Roche will win.

Best of luck with your journey

That's right even severe acne can be healed with diet ....

3 hours ago, cnb30 said:

Death always works... And becomes ever more tempting by the day. Quite frankly , I think that accutane would've been dealt with by now if everyone here sought revenge on the murdercorps.

I have a better movie plot. Kid manages to fight his way back into the light, graduate college, get hired into the very same company that left him for dead, then he has a choice, rises to the top of marketing for said company and shares his pain to the masses of innocent people of the world, or B. seeks his vengeance from the company from within. Better movie script.

@macleod Nice story, but one who is honest won't rise to the top of marketing at a place like Roche/Genentech. Also, most of the major scumbags who were there telling lies about Accutane as their profession have moved on to other drug companies or luxurious retirement by now.

@cnb I won't lie. Accutane trashed my life. Has it been worth living in the state that I am in? No. But you should know that I recovered quite a bit of my personality, emotions, and sexual function during the first 6 months after experiencing my crash. Give it some time before you make your final decision.

@accuity_drane Thanks for the link. I was aware that Roche had lost the McCarrel case by some miracle, but this is the first time I have heard that the jury was presented with internal documents showing that Roches own scientists uncovered a causative link between Accutane and IBD.

http://pfscure.webs.com/

Might be worth a try but not many comments to go by.

@dubyaMy main issue is that while the sexual side effects have been going away, I NEED motivation and passion back. I'm about to start architecture school in NYC and quite frankly, my motivational drive is what got me here. If I fail out that's gonna ruin my life, as I have had a dream to be a great architect since maybe I was 5-6 years old.
Also, how long have you been off accutane too?

Over 17 years since I've taken Accutane. Point is that if you are early into this, there is a good chance of significant recovery. It's not only me saying this from personal experience but many others who have mentioned that they improved drastically in the first year after developing side effects.

Did someone mention that they have very low cholesterol?