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Repairing the long-term damage from Accutane

 
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158
(@accuity_drane)

Posted : 06/22/2017 5:39 pm

24 minutes ago, Colinboko said:
If you want to believe your brain has been crushed to mush then by all means go for it! That thought just terrifies me and would probably drive me to suicide if I knew this was irreversible.

It has nothing to do with my belief of brain damage or not. I was just pointing out the fact that brain damage and alterations are a very real thing with Accutane. My willingness to believe in it cannot change that. As you alluded to, it doesn't mean you or I have it though. There are just so many other issues that could be at play. That being said, even if brain damage is part of the equation, it's not a death sentence. In the past, I have linked to a study done in alcoholics (alcohol affects a similar part of the brain as Accutane) that demonstrated how brain damage does repair itself over time. Also, science has developed a number of novel approaches to dealing with the issue in recent years: Hormone replacement, TMS, deep brain stimulation, as well as some drugs that increase neurogenesis and neuroplasticity.

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cnb30, Colinboko, cnb30 and 3 people reacted
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75
(@colinboko)

Posted : 06/22/2017 5:51 pm

9 minutes ago, ACCUiTy_drANE said:
41 minutes ago, Colinboko said:
If you want to believe your brain has been crushed to mush then by all means go for it! That thought just terrifies me and would probably drive me to suicide if I knew this was irreversible.

It has nothing to do with my belief of brain damage or not. I was just pointing out the fact that brain damage and alterations are a very real thing with Accutane. My willingness to believe in it cannot change that. As you alluded to, it doesn't mean you or I have it though. There are just so many other issues that could be at play. That being said, even if brain damage is part of the equation, it's not a death sentence. In the past, I have linked to a study done in alcoholics (alcohol affects a similar part of the brain as Accutane) that demonstrated how brain damage does repair itself over time. Also, science has developed a number of novel approaches to dealing with the issue in recent years: Hormone replacement, TMS, deep brain stimulation, as well as some drugs that increase neurogenesis and neuroplasticity.

I appreciate your replies and commitment to research. I really do. I guess just hearing things as severe as brain damage just scare the living shit out of me. I believe we are getting closer to several different answers, so I apologize for making any snarky remarks. I'm just tired and want answers (as we all do).

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MemberMember
1803
(@guitarman01)

Posted : 06/22/2017 8:39 pm

10 hours ago, cnb30 said:

So I got a QEEG last week, and while I haven't seen detailed results yet, the doctor called up to say that something is really wrong with my brain waves pertaining to Emotions, and Executive functioning.

What kind of doctor gave you this test? was this covered by insurance?

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MemberMember
1803
(@guitarman01)

Posted : 06/24/2017 11:53 am

On 6/21/2017 at 4:13 PM, nooby1979 said:

According to a few pages I've seen online atherosclerosis might be reversible.

Reversible if you catch it early enough. This is what im most concerned about atm. I hope im wrong. Ill find out more next week. Alot of these symptoms could be vascular in nature.
It could be as simple as if we already had cardiovascular risk factors going on before accutane, This would put us at greater risk.

The liver and/or the intestinal microbiota might play a significant role.

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MemberMember
1803
(@guitarman01)

Posted : 06/24/2017 7:15 pm

Actually I take that back. This is my most major concern. My doctor sat on this test result for weeks. This is the test ive been talking about from mayo.
Autoimmune dysautonomia evaluation.
Positive. This is something that attacks the central nervous system. 30 percent chance this is cancerous? (still looking into this)

AChR Ganglionic Neuronal Ab
high. Value 0.07 Reference Value <0.02

This profile, in the proper clinical context, would support autoimmune dysautonomia. The influence of monoclonal and polyclonal gammopathies is uncertain. A paraneoplastic basis should be considered, according to age, sex, and other risk factors.

I imagine ill be going to mayo clinic in the very near future to fully investigate this.

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MemberMember
1
(@welcomingpupa)

Posted : 06/24/2017 11:32 pm

You guys remember these? They are basically the side effect pamphlets/welcome packet. One of the phrases in here says "brain damage" and "mental problems" so they did warn us... We must move on somehow but how when we are damaged. Acceptance could be key to this for us, but ultimately the entire situation sucks to be honest. My dick doesn't work at all now which is bullshit. And I now know what accutane depression feels like, hope you like nothing AT ALL because that's basically how it feels, like you are not calible of life. You can work on self improvement better if you can consistently accept it takes time each and every day. Make life easy on yourself, it sucks enough being Taned out for years on end. I wason 80mg for 7 months. I have always been skinny. That dose is incredible high. It fried me. I am Taned out too lol. Not funny! I want tosee who I would have been PHYSICALLY without accutane destroying my muscles and bone density like it did. I didn't mean to sign up for this pharmaceutical acid, but here I am. I have read that accutane is so many things,   How can we get better, doctors lawyers, any one other than sufferers should be welcomed into this thread. This is a legendary thread and I hope that we can all slowly but for surely make this journey count somehow. Even with chronic dry eyes, muscle fatigue joint paint dry eyes and lack of drive. . I hate the crap. To hell with accutane. I would try the acne.org stuff first if I had acne now and a healthy perfect diet. But accutane? That's an extreme measure 

20170624_210704.jpg

[Edited image out]

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MemberMember
37
(@mariovitali)

Posted : 06/25/2017 2:58 am

6 hours ago, guitarman01 said:

Actually I take that back. This is my most major concern. My doctor sat on this test result for weeks. This is the test ive been talking about from mayo.
Autoimmune dysautonomia evaluation.
Positive. This is something that attacks the central nervous system. 30 percent chance this is cancerous? (still looking into this)

AChR Ganglionic Neuronal Ab
high. Value 0.07 Reference Value <0.02

This profile, in the proper clinical context, would support autoimmune dysautonomia. The influence of monoclonal and polyclonal gammopathies is uncertain. A paraneoplastic basis should be considered, according to age, sex, and other risk factors.

I imagine ill be going to mayo clinic in the very near future to fully investigate this.

Choline and acetylcholine are related to some of these Syndromes. I would like to point your attention to the fact that MERTK, GAS6 and TAM Signalling are related to many autoimmune diseases. Just a thought

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MemberMember
158
(@accuity_drane)

Posted : 06/25/2017 10:24 am

On 6/25/2017 at 12:32 PM, WelcomingPupa said:

You guys remember these? They are basically the side effect pamphlets/welcome packet. One of the phrases in here says "brain damage" and "mental problems" so they did warn us... We must move on somehow but how when we are damaged. Acceptance could be key to this for us, but ultimately the entire situation sucks to be honest. My dick doesn't work at all now which is bullshit. And I now know what accutane depression feels like, hope you like nothing AT ALL because that's basically how it feels, like you are not calible of life. You can work on self improvement better if you can consistently accept it takes time each and every day. Make life easy on yourself, it sucks enough being Taned out for years on end. I wason 80mg for 7 months. I have always been skinny. That dose is incredible high. It fried me. I am Taned out too lol. Not funny! I want tosee who I would have been PHYSICALLY without accutane destroying my muscles and bone density like it did. I didn't mean to sign up for this pharmaceutical acid, but here I am. I have read that accutane is so many things, How can we get better, doctors lawyers, any one other than sufferers should be welcomed into this thread. This is a legendary thread and I hope that we can all slowly but for surely make this journey count somehow. Even with chronic dry eyes, muscle fatigue joint paint dry eyes and lack of drive. . I hate the crap. To hell with accutane. I would try the acne.org stuff first if I had acne now and a healthy perfect diet. But accutane? That's an extreme measure

[Edited image out]

Yep, I saved mine saved as well. Another phrase it uses is "irreversible organ damage," so that essentially covers everything that could go wrong. But I think those warnings are meaningless when the doctor prescribing the drug downplays them as a formality. Many people are told by their doctors that the most serious side effects are "unproven" or "reversible." So as a patient, it's easy to dismiss all of the verbiage in the booklet, especially when you are looking for reasons to use this powerful drug in the first place. There is a huge disconnect between what the warnings say and what doctors say, and that is the part outsiders to our situation never talk about. The FDA has stated since 2005 that mental problems incurred from this drug can persist after treatment. I know this directly flies in the face of what many health professionals say/imply.

I, too, have the entire cluster of symptoms everyone else seems to have post-Accutane. Profound mental numbness, scrawning out, dry around my eyes (thankfully not too severe), IBS, impaired wound healing, etc. My facial structure has also taken on some subtle changes, which could be due to fat loss or bone changes. For the past three months, I have tried like hell to gain weight. I can attain a little definition, but essentially no size, whereas previously I had an athletic body type. The only things that have helped my manage mental symptoms have been antioxidants (acetyl-l-Carnitine, Coezyme Q10, Carnosine) and NON-SSRI mood stabilizers (Ashwagandha, NSI-189, a few others). It seems every week or two weeks, I have a few days of mental clarity where everything feels 80% back to normal. However, I always slip back. I have no idea what is going on with that. Dietary changes have done me no good, even for my IBS (Magnesium Citrate helps though).

I am still contemplating testosterone replacement therapy, as that has hope in managing some symptoms. Accutane has substantial documented anti-androgenic effects. The problem is that I live in a state with hefty restrictions on (doctor prescribed) TRT. Unfortunately, managing symptoms has to be something you dedicate a lot of time to. I don't see any way around it. I try to turn it into an interest.

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1803
(@guitarman01)

Posted : 06/25/2017 10:42 am

What does ganglionic mean in the ACHR test?

The ganglionic antibody is a marker used in autoimmune and paraneoplastic (associated with cancer) diseases, particularly those that affect the autonomic system (sympathetic and parasympathetic). In fact, the only instance where I use the test is in the context of autoimmune dysfunction, such as autoimmune neuropathy. Symptoms that might suggest this: erectile dysfunction, dry mouth, dry eyes, pupillary dysfunction, orthostatic hypotension, gastrointestinal dysfunction (diarrhea, constipation), heart arrhythmias, and/or sweating dysfunction.

Depending on a few different factors. This could be a lawsuit right here. Minus the statute of limitations, but I would hope there could be some exceptions. For example no one would have figured this out in the 80s or 90s, they didnt even have testing for this.

This could lead to SIBO from slowed gut movement, this could cause a host of problems, one being possible k2 deficiency, which in turn you could start to have problems with calcium and everything else they are finding out about k2.

The question is what came first the chicken or the egg? What caused what problem? wheres the source? (minus accutane of course) The liver or the gut?

Im pregaming this a little bit, but you guys should absolutely try to get this test if you can. Its too important to not know.
Mainly your looking at AChR ganglionic neuronal antibodies. A neurologist would be the doctor to order this, your primary care doctor could maybe order this as well.

I think just a few people hitting on this (or any other relevant testing that has meaning) could spark something that could shut this drug down.

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75
(@colinboko)

Posted : 06/25/2017 11:35 am

So, another weird thing I've noticed. I feel worse when I get a lot of sleep. Even though I'm super duper tired, if I zonk out for 7+ hours I feel WAY worse. I remember reading elsewhere that sleep deprivation has significantly helped CFS sufferers and even kids with things like autism. I wonder if this is because cytokine production reduces in the brain?

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MemberMember
1803
(@guitarman01)

Posted : 06/25/2017 11:57 am

just found this as well. Another test maybe you guys should get to possibly help rule things in or out.

ImmunogloulinE246.0kU/LkU/L
Consistent with allergic disease

Reference Range:
Mean:13.2 +1SD:41.0 +2SD:127.0

Elevated concentrations ofIgEare generally thought of in the context of allergic disease. However, increases in the amount of circulatingIgEcan also be found in various other diseases, including primary immunodeficiencies, infections, inflammatory diseases, and malignancies.

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MemberMember
75
(@colinboko)

Posted : 06/25/2017 1:07 pm

Effects anyone has had from gluten free, dairy free diets?

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MemberMember
14
(@octopusfrog)

Posted : 06/25/2017 7:01 pm

On 6/25/2017 at 8:15 AM, guitarman01 said:

Actually I take that back. This is my most major concern. My doctor sat on this test result for weeks. This is the test ive been talking about from mayo. 
Autoimmune dysautonomia evaluation.
Positive. This is something that attacks the central nervous system. 30 percent chance this is cancerous? (still looking into this)

AChR Ganglionic Neuronal Ab
high.  Value 0.07  Reference Value <0.02

This profile, in the proper clinical context, would support autoimmune dysautonomia. The influence of monoclonal and polyclonal gammopathies is uncertain. A paraneoplastic basis should be considered, according to age, sex, and other risk factors.

I imagine ill be going to mayo clinic in the very near future to fully investigate this.

 

You arent the first person to get diagnosed with this. Check out Babis 
I was following his posts, but he disappeared in 2014. Hopefully he recovered. 

- /topic/272480-accutane-and-erectile-dysfunction/?do=embed&comment=3153201&embedComment=3153201&embedDo=findComment">

I just thought I owe an update. It may be slightly off topic, but tangentially related to the ED issue.

 

As mentioned above, about 15 months ago, I developed symptoms of hypogonadism while on Accutane. 6 weeks after stopping, I tested low on testosterone and had inappropriately normal LH or Lutenizing Hormone (LH should be elevated by the pituitary in response to low T). Short-term testosterone therapy restarted my system and resolved symptoms.

 

But 11 months ago, I developed several symptoms of dysautonomia or autonomic dysfunction. This time, my response to testosterone therapy was only partial. ED is one of the hallmarks of dysautonomia, so it seemed obvious that this was a second contributing factor.

 

When I finally had autonomic testing [Edited link out] done, it was positive. However, I was told that there is no cure, only symptomatic treatment. I was sent home with orders to drink more water and eat salty foods such as potato chips. I replied "which brand?" and "will you give me a prescription for the potato chips?" and I got a blank stare from the doc |::) But things worsened, I fainted and got injured, and my doctors prescribed symptomatic medications, that only reduced some of my symptoms by 30%.

 

I wanted to find and treat the cause, not the symptoms. When I asked my doctors for the cause they said "it is what it is". After reading lots of literature, it seemed that one of the few potentially treatable causes of dysautonomia is autoimmunity, so I asked my doctors if my problem was autoimmune. I was given a firm no. I kept researching and found the Autoimmune Dysautonomia Evaluation Algorithm [edited link out]. I requested the test from my doctors, who one after another denied. They almost convinced me that that my problem was not autoimmune. But I wanted to cover all corners so I decided to just keep going to different doctors until someone would agree to do the test.

 

After 10 months and 10 doctors, someone finally ordered the test. Surprisingly, the result was positive. (The funny part is, even that doctor told me the results were negative; I noticed the positivity myself when I asked for a copy of the lab report.) In any case, the result was positive for the alpha-3 Acetylcholine Receptor Ganglionic Autoantibody [Edited link out], which indeed suggested neurologic autoimmunity. I thought I finally had a clue, but my doctors did not think much of the result. They claimed such antibodies have not been proved to cause direct damage to the autonomic nervous system and that immunotherapy would be contraindicated. However, the Mayo laboratory interpretation [Edited link out] of the test, as well as some literature stated exactly the opposite. This antibody is one of the few that have been actually shown to cause direct damage to autonomic ganglia. It occurred to me that I should not waste more time waiting for my buffoon doctors to get smarter. I e-mailed a neuro-immunologist at Mayo clinic, who offered to see me asap.

 

I just got back from that trip. The neuro-immunologist confirmed that this antibody is directly causing autonomic neuropathy and that 60% of patients respond to immunotherapy, and he provided guidelines on how to administer such therapy. Because it requires injections, testing and monitoring, it cannot be done now (since I am about to change job and continent). I hope I can find some expert in Europe willing to administer the therapy.

 

Accutane, the H1N1 vaccine and viral infections are all known to trigger autoimmune neuropathy. There is no way for me to tell which one of those was the culprit. More likely than not, it was all of the above plus genetics.

 

By the way, since I have been in a catabolic state for months, I asked my neuroendocrinologist to test my IGF-1 level. (This peptide is secreted by the pituitary and stimulates the liver to produce growth hormone.) It just came back low. This is a second strong indication for a pituitary problem, in agreement with articles posted above, notably

Effects of chronic retinoid administration on pituitary function

Short-term isotretinoin treatment decreases IGF-1 and IGFBP-3

Isotretinoin influences pituitary hormone levels in acne patients.

 

15 months after symptom onset, I finally have clues for some of my problems. Now the question is what to do about them.

Edited September 1, 2011 by Babis

 

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(@truejustice)

Posted : 06/25/2017 7:54 pm

I know it's hard to find a doctor who'll happily prescribe you potato chips - esp the salty ones :)

Glad you kept a good sense of humour through this carnage!!

Best of luck with your next steps!!

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MemberMember
1803
(@guitarman01)

Posted : 06/26/2017 11:31 am

16 hours ago, octopusfrog said:

You arent the first person to get diagnosed with this. Check out Babis
I was following his posts, but he disappeared in 2014. Hopefully he recovered.

Thanks for this information. This could be important. I wish I knew this guy's real name or if he was still floating around anywhere online. Mayo could match our drug history and possibly make the connections.

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MemberMember
157
(@tanedout)

Posted : 06/26/2017 3:58 pm

Not sure if this has already been posted, but I don't remember seeing it;

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Peripheral Nervous System Involved in Post-Finasteride Syndrome Patients with Severe Erectile Dysfunction, New Study Demonstrates for the First Time

SOMERSET, N.J., April 18, 2017 Post-finasteride syndrome (PFS) patients suffer from altered levels of critical brain-function regulators, including neuroactive steroids, according to a new clinical study published in The Journal of Steroid Biochemistry and Molecular Biology.

TitledNeuroactive Steroid Levels and Psychiatric and Andrological Features in Post-Finasteride Patients, the three-year study also uncovered evidence of neuropathy of the pudendal nerve among those with severe erectile dysfunction.

In all, 16 men with PFS and 25 control patients were evaluated in the study conducted at theUniversity of Milanos Department of Pharmacological and Biomolecular Sciencesby a team of 12 researchers led by Roberto Cosimo Melcangi, Ph.D. The PFS patients had discontinued finasteride for a median of 5.4 years at the time of evaluation, and had no prior history of erectile dysfunction or depression prior to finasteride use.

Key findings of the study include broad effects on plasma and cerebrospinal fluid (CSF) neuroactive steroid levels observed in 14 PFS patients, as compared to 25 controls. Statistically significant decreased levels of DHT, pregnenolone, progesterone, 17-beta estradiol and dihydroprogesterone (DHP), and increased levels of DHEA, testosterone and 3-alpha diol were observed in the CSF of PFS patients.

[Edited imageout]

In plasma, statistically significant decreased levels of DHP and allopregnanolone, and increased levels of pregnenolone, DHEA and testosterone were observed.

Decreased plasma levels of allopregnanolone and decreased CSF levels of progesterone are common features of anxious/depressive symptomatology. Important physiologic effects of neuroactive steroids on brain function include neuroendocrine control of reproduction and sex behavior, synaptic plasticity, morphology of neurons and astrocytes, maintenance of cytoskeleton proteins and myelin, adult neurogenesis, and cognition-related functions.

The study also identified, in 25 percent of PFS patients, the first objective evidence of abnormal somatosensory evoked potentials (SSEP) of the pudendal nerve. Abnormal SSEP findings were observed in PFS patients with severe ED.

Peripheral neuropathy of the pudendal nerve, the major nerve supplying the genitals that is critical for peripheral neurogenic control of erection, in PFS patients is a novel finding that demonstrates for the first time involvement of the peripheral nervous system in PFS patients with severe ED.

Additionally, 50 percent of the PFS patients were diagnosed with major depression based on the results from validated questionnaires, the Mini-International Neuropsychiatric Interview, the Beck Depression Inventory and the Beck Anxiety Inventory.

Such depression represents the first confirmation of findings in research led byShalendar Bhasin, MDand published last year in The Journal of Clinical Endocrinology & Metabolism (Characteristics of Men Who Report Persistent Sexual Symptoms after Finasteride Use for Hair Loss), which suggested that men who experience persistent sexual dysfunction after discontinuing finasteride have neurobiological abnormalities.

Among the most important milestones of Professor Melcangis research is that it builds directly on Dr. Bhasins work, said Dr. John Santmann, CEO of thePost-Finasteride Syndrome Foundation, which sponsored the study.

Medical science is now one step closer to characterizing the underlying biologic mechanisms of PFS, which in turn promises to pave the way for the development of effective therapies, he added.

The full JSBMB study is availablehere.

Post-finasteride syndrome occurs in men whove taken finasteride to treat hair loss, or enlarged prostates. Reported symptoms include: loss of libido, erectile dysfunction, depression, suicidal ideation, anxiety, panic attacks, Peyronies disease, penile shrinkage, gynecomastia, muscle atrophy, cognitive impairment, insomnia, severely dry skin and tinnitus. The condition often has a life-altering impact on victims and their families, such as job loss and the breakup of marriages and romantic relationships, while also being linked to suicides.

As of April 2107, the World Health Organization Programme for International Drug Monitoringsdatabase of adverse drug reactionscontained 13,533 finasteride ADRs, including 2,694 reports of erectile dysfunction, and 3,109 psychiatric disorders including 44 completed suicides and 31 suicide attempts.

In March 2015, the U.S. National Institutes of Health listed PFS on itsGenetic and Rare Diseases Information Center,noting that some patients who have taken finasteride have referred to side effects such as sexual dysfunction and depression (sometimes severe) Studies sponsored by the NIH and other organizations are underway to better understand the effects of 5-alpha reductase inhibitor drugs.

[Edited link out]

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45
(@cnb30)

Posted : 06/26/2017 5:53 pm

On 6/22/2017 at 4:24 PM, Colinboko said:
Okay I believe accutane can be held responsible for lots of things but this seems a tad far fetched...

i just think that anything we have that is brain related is most definitely a symptom of something else happening in the body. (I.e inflammation, hormonal (for some people)

You're walking on thin ice here buddy. I'd suggest you get ye hell out of this forum if you're that naive not to believe the psychological effects this has. Amd yes, there are STUDIES proving otherwise.

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MemberMember
75
(@colinboko)

Posted : 06/26/2017 8:28 pm

3 hours ago, cnb30 said:
On 6/22/2017 at 3:24 PM, Colinboko said:
Okay I believe accutane can be held responsible for lots of things but this seems a tad far fetched...

i just think that anything we have that is brain related is most definitely a symptom of something else happening in the body. (I.e inflammation, hormonal (for some people)

You're walking on thin ice here buddy. I'd suggest you get ye hell out of this forum if you're that naive not to believe the psychological effects this has. Amd yes, there are STUDIES proving otherwise.

There are studies proving plenty of things. And, if you were to see my response to Accuity, I actually apologized? So your doctor said your brain waves are fucked? Great! Have you heard anything else from him since then? If you're gonna throw in a post THAT vague and frighten half the newbies on here then I suggest you wait until you hear more about this subject before doing so, that's all.

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MemberMember
75
(@colinboko)

Posted : 06/26/2017 9:10 pm

IMG_2196.PNG

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MemberMember
31
(@jorcruz24)

Posted : 06/27/2017 1:39 am

Hi everyone,

This thread is a great comfort for me as I've been reading this to know there's other people suffering from the same horrible side effects.

Im a 24 year old male and was prescribed accutane last year, which I only took for 3 months once the side effects became unbearable. The crazy part is that the majority of side effects didn't appear until after months:

-dry eyes
-chronic daily headaches and increased pressure in the skull daily
-fatigue
-an itchy rash on my scalp that hasn't gone away.

ive been off accutane for 6 months now and have all these effects so I'm getting to the point where I feel like these will be life long and there is no cure and other effects will show up later on

bottom line
this thread began 8 years ago with people with the same side effects. Where are you guys now? Did things improve or only get worse with time? Is there any hope? Please be honest.

The he doctors all say nothing is wrong after tests and scans, I find none of the symptoms lessening only worsening.

Is there any hope or have we ruined our lives forever?

please be honest. I think about suicide all the time now and don't know how much more of this I can take. Please someone tell me there's hope.

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MemberMember
75
(@colinboko)

Posted : 06/27/2017 7:59 am

6 hours ago, Jorcruz24 said:

Hi everyone,

This thread is a great comfort for me as I've been reading this to know there's other people suffering from the same horrible side effects.

Im a 24 year old male and was prescribed accutane last year, which I only took for 3 months once the side effects became unbearable. The crazy part is that the majority of side effects didn't appear until after months:

-dry eyes
-chronic daily headaches and increased pressure in the skull daily
-fatigue
-an itchy rash on my scalp that hasn't gone away.

ive been off accutane for 6 months now and have all these effects so I'm getting to the point where I feel like these will be life long and there is no cure and other effects will show up later on

bottom line
this thread began 8 years ago with people with the same side effects. Where are you guys now? Did things improve or only get worse with time? Is there any hope? Please be honest.

The he doctors all say nothing is wrong after tests and scans, I find none of the symptoms lessening only worsening.

Is there any hope or have we ruined our lives forever?

please be honest. I think about suicide all the time now and don't know how much more of this I can take. Please someone tell me there's hope.

Hang in there! I know it seems tough cause there aren't a lot of "cures" but there certainly have been a fair share of people who have treated the symptoms which can help you keep fighting.

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MemberMember
1803
(@guitarman01)

Posted : 06/27/2017 9:44 am

7 hours ago, Jorcruz24 said:

chronic daily headaches and increased pressure in the skull daily

What's this? Too many people have mentioned this. Is this a vascular constriction that could be from any number of causes? Could this be from bloating and extremely abnormal digestion that's creating pressure on the diaphragm? Is there some indication of increased pressure in the spinal fluid? I can give a case example of a adverse reaction to doxycycline, where a woman has to have routine lumbar punctures to reduce pressure in the Brain. This can be figured out. It just needs to be figured out.

I faxed my records to mayo. They should be calling me within a week.

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MemberMember
75
(@colinboko)

Posted : 06/27/2017 3:24 pm

5 hours ago, cnb30 said:

Can someone here get rid of Colinboko? He is only a troll attempting to deny the issues that thousands of people who took accutane face exist.

I'M A TROLL? How in any way shape or form have you contributed to this forum? Pretty positive you have pages and pages just talking about your suicidal ideations. I'm not even going to fight with you anymore on this.

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MemberMember
75
(@colinboko)

Posted : 06/27/2017 8:34 pm

http://forums.phoenixrising.me/index.php?threads/cfs-temporarily-cured-during-common-cold.44123/

still think this is real interesting ^

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MemberMember
1803
(@guitarman01)

Posted : 06/27/2017 8:55 pm

Was just reading the backpages of Babis posts. Smart guy. He went to great lengths and looks like he's been through the shit in searching for a diagnosis and fighting for his health and ignorant doctors along the way. I dont recall anyone having more extensive testing. look at his posts if you havent. We need to pool what we might have in common, If we really want to find something that connects this and us. I'll take some of this information directly to mayo, but they are so busy, im not sure how far ill get. We need more testing, for instance 1 in 15000 get diagnosed with theAChR Ganglionic Neuronal Ab that mayo screens for. This makes 2 that took accutane. not a coincidence. Make it three and this could really be something. it might already. You want to make a test count, try to get this test.

Autoimmune Dysautonomia Evaluation, Serum

[Edited link out]
Babis ended up having to get injections at 10k a pop every 6 weeks to treat this.
he also had a pet scan that might have shown something similar to brain inflammation . only properly interpreted at mayo clinic.

They are saying this might not even be the lead antibody involved. Research is ongoing still. Just like his hormone deficiency something could be attacking the glands as well. The hypothalamus, the pituitary.

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