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Posted (edited)
48 minutes ago, marshl1 said:

Are you saying that you have these eye conditions post accutane?

I have eye floaters,dry eyes, eye inflammation and light sensitivity.
Im saying has anyone had their eye floaters formally diagnosed as vitreous floaters?
This would probably involve dye colored eye drops to dilate the pupils then examine. 

Do your floaters respond to blinking?

Finally, whereas most floaters are found in the vitreous fluid, it is important not to overlook another, simpler cause of the problem. You could be suffering from debris in the tear film. Many people, especially those prone to allergies, blepharitis (eyelid inflammation) or styes can accumulate makeup, mucus and other material within their tears. Floaters due to tear-film debris move when you blink, whereas vitreous floaters respond more to eye movements than to blinking.

Edited by guitarman01

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Posted
20 minutes ago, guitarman01 said:
I have eye floaters,dry eyes, eye inflammation and light sensitivity.
Im saying has anyone had their eye floaters formally diagnosed as vitreous floaters?
This would probably involve dye colored eye drops to dilate the pupils then examine. 

Do your floaters respond to blinking?

Finally, whereas most floaters are found in the vitreous fluid, it is important not to overlook another, simpler cause of the problem. You could be suffering from debris in the tear film. Many people, especially those prone to allergies, blepharitis (eyelid inflammation) or styes can accumulate makeup, mucus and other material within their tears. Floaters due to tear-film debris move when you blink, whereas vitreous floaters respond more to eye movements than to blinking.

20 minutes ago, guitarman01 said:
I have eye floaters,dry eyes, eye inflammation and light sensitivity.
Im saying has anyone had their eye floaters formally diagnosed as vitreous floaters?
This would probably involve dye colored eye drops to dilate the pupils then examine. 

Do your floaters respond to blinking?

Finally, whereas most floaters are found in the vitreous fluid, it is important not to overlook another, simpler cause of the problem. You could be suffering from debris in the tear film. Many people, especially those prone to allergies, blepharitis (eyelid inflammation) or styes can accumulate makeup, mucus and other material within their tears. Floaters due to tear-film debris move when you blink, whereas vitreous floaters respond more to eye movements than to blinking.


Oh yeah for sure, several times. As well as taking accutanne i've had LASIK. I was followed up intensively after surgery because of these floaters. I have also had several second opinions. I was told by every eye doctor, including the impartial ones that I had vitreous floaters but they could not be caused by LASIK because this procedure is performed on the outer surface of the eye and couldn't affect the vitreous humor
Just now, marshl1 said:

Oh yeah for sure, several times. As well as taking accutanne i've had LASIK. I was followed up intensively after surgery because of these floaters. I have also had several second opinions. I was told by every eye doctor, including the impartial ones that I had vitreous floaters but they could not be caused by LASIK because this procedure is performed on the outer surface of the eye and couldn't affect the vitreous humor

I've also experienced pretty severe photophobia for years but it's improving now. Oh and night blindness.
 

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Posted (edited)
On 7/1/2018 at 5:00 PM, marshl1 said:

 

Removed by author.

Edited by Deleted Account

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Posted
1 hour ago, Devolution said:
Your photophobias improving that’s very interesting to say the least, I’m more interested in getting my cones and rods tested as accutane has been show to reduce light bleeching of the photoreceptors, so how quickly they adapt to light etc, I do have some slack I can use with optamologist because at least I can show them my floaters, which happened overnight and I believe mine where caused by accutane messing with my collagen. It’s good photophobia is improving for you, has the night vision issues remained a constant? 

I’ve been looking more at the propeciahelp forum and it’s scary how identical my accutane issues are with theirs, I can find more people who used finasteroid than accutane with my issues so I definitely think a cure for finasteroid or at least treatment will fix most of us over on the accutane side of things if it’s truly a 5ar issue. Skin strechiness I also found to be caused by finasteroid, exactly like the way my skin has gone so defiantly similarity’s which I find exciting. A person also said he saw his night vision and visual snow go back to normal while water fasting but once he ate again it reverted so I’m eager to try this myself as it would indicate a reversible change. 

Oh man I wrote you a really long reply but must of forgotten to submit it sorry

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Posted
1 hour ago, marshl1 said:

I have also had several second opinions. I was told by every eye doctor, including the impartial ones that I had vitreous floaters

so was this a conclusion based on a certain test?
Or based on described symptoms?
Could they literally see the floaters after dilating your eyes?
 

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Posted (edited)
On 7/1/2018 at 6:37 PM, marshl1 said:


 

Removed by author.

Edited by Deleted Account

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Posted
45 minutes ago, guitarman01 said:
so was this a conclusion based on a certain test?
Or based on described symptoms?
Could they literally see the floaters after dilating your eyes?
 

Yes they could see the floaters after dilating my pupils and performing a simple slit lamp test. They were floating around inside the vitreous

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Posted (edited)
On 6/29/2018 at 5:15 PM, hatetane said:
https://www.quora.com/Should-I-take-Accutane-Is-it-safe
what the professional are saying is so uneducated.
Kudos to Mark Dunn though! https://www.quora.com/Should-I-take-Accutane-Is-it-safe
what the professional are saying is so uneducated.
Kudos to Mark Dunn though!

Actually, Mr. Croft's answer is on the more precautions side of what the professionals say online and falls in line with the misinformed general consensus on Accutane among the medical community. He at least  mentioned possible liver problems, "severe" dryness, including "down there" [vaginal?] dryness, and ended by saying acne will probably clear for most if left untreated. Most of what I have read regarding "ask-a-doctor" Q/A is dermatologists advising that Accutane is very safe and "don"t believe the horror stories".

Yes, kudos to Mark Dunn. He appears to be an advocate for anti-depressant safety.

. Edited by Dubya_B

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Posted

What do you mean by advocate for anti-depressant safety??

pls elaborate.....

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Posted
9 hours ago, Devolution said:

I’ve been looking more at the propeciahelp forum and it’s scary how identical my accutane issues are with theirs, I can find more people who used finasteroid than accutane with my issues so I definitely think a cure for finasteroid or at least treatment will fix most of us over on the accutane side of things if it’s truly a 5ar issue. Skin strechiness I also found to be caused by finasteroid, exactly like the way my skin has gone so defiantly similarity’s which I find exciting. A person also said he saw his night vision and visual snow go back to normal while water fasting but once he ate again it reverted so I’m eager to try this myself as it would indicate a reversible change. 

Propeciahelp is under new management and the new administrators welcome post-Accutane patients and look forward to promoting research into the striking similarities among PFS, PSSD, and the condition many of us suffer from after Accutane.

If you wish to take part the discussion forum, please remember to check "Isotretinoin" in the "drug taken" drop-down box when registering.

For those of you who weren't around at the time, propeciahelp once had post-Accutane patients joining at nearly the same rate as PFS patients. It was open discussion among our patient groups until the site founder decided against this due to what he called "legal" reasons and because it isn't "post-finasteride syndrome" if one had taken Accutane.  He may have been in the right, but this move prevented support for PFS research from a large portion of the post-Accutane community and blocked the post-Accutane community from taking part in the PFS research at some point.

This ban has been lifted, so feel free to sign up if you wish.

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Posted
20 minutes ago, TrueJustice said:

What do you mean by advocate for anti-depressant safety??

pls elaborate.....


Just look at his profile: https://www.quora.com/profile/Mark-Dunn-64

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Posted (edited)
On 7/2/2018 at 3:06 AM, Dubya_B said:

 

Removed by author.

Edited by Deleted Account

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Posted

Hi Guys, 

Lots of great material i've been reading from this thread I appreciate the findings. I'd like to know your thoughts on my brother who is experiencing this issue. He is 26 years old, nurse working in the ER. 

Context:  It's been about 2 months so far, he took 1 dose at 20 mg and stopped. Within two hours of taking the one dose he started to feel his body change. He explains that he feels, brain fog, dry eyes, dry skin, joint pain, anxiety, depression, and suicide. When I asked him to describe the pain he says the biggest issue is his eyes always feel like there is sand in it. That when he wakes up his eyes feel like they were never asleep. 

Action Plan: So far we found a natural path who has got him on a bunch of supplements such as, multi-vitamin, zetox, berberine, and about 6 other natural supplements (sorry I'm not at his house at the moment so i can't see the rest) He's been getting massages, runs daily, acupuncture. So far it's been two weeks on this detox program he's mentioned that his bowel movements have become much more regular than when he took accutane(1st month). And sorry it's not accutane but the generic version of accutane in the states. 

While coming up with our own action plan initially our first  theory we was that the accutane was every where in his body and it needed to find a type of food while digesting to bind to while excreting it from his body. This seemed logical because he started to have more regular bowel movements, but he started to notice that his body doesn't seem to be absorbing the tremendous amounts of water hes been drinking.

Results so far:  There were two days out of the 2 month period where he said his eyes were burning, but recently he says that his eyes have felt like they're getting better. As mentioned, his bowel movements have become much more regular.  However, we do continue to go through these mood phases  "confident it will leave", to the initial mood type of "depressive anxiety, and the biggest is anger". I almost feel like he cannot get past a mental block. 

So far i've reached out to everyone locally, a handful of derms all of which said that accutane side effects only have a two week half life and should leave the body soon(yikes they have no idea about how many patients are going through this) I'm considering speaking to oncology department to see if they can provide me with more insight (perhaps suggestions about what onocology patients do to recover from cancer treatment). I've reached out to a doctor that claims fasting will work but very dangerous(we're against this). Lastly, I found someone named Lewis Rowlands in the UK who has experienced the same symptoms my brother has gone through and claims to be fully recovered and reverted his symptoms. So we've gone forward with his strategy of providing a hair analysis and will circle back with an action plan. 

Lastly, after seeing videos and doing research, I did suggest to the natural path if zinc would be good for him and 4 days after taking the multi vitamin with zinc he mentioned that his eyes felt better. Not sure if that's a direct correlation, but im playing with a theory that his mineral levels are all off and the slightest vitamin % adjustments could be that much more effective. Some how acupuncture seems to be effective I just can't figure out how. One of the pain management providers I spoke with told me that he had a patient that had permanent nerve damage, sought out a acupuncturist in china that was able to heal  him 100% whole. 

My goal is to document as much of this process as I can and to share my brothers experience and story with as many people considering this drug because the numbers published are simply skewed when it comes to side effects.  I browse reddit to see all these people with success before/after photos but internally i hope theyknow they might be paying for it years later. Is that really worth it? Quality of life will suffer dramatically.  

Looking forward to the feedback and support! 

Update: We've found another natural path that has a different approach to the previous natural path. We will still treat this holistically as a systemic problem however, we will first focus on complete detox of the liver and then address individual issues(eyes) after the liver has been completely detoxed. She has also got him using Taurine. He will also be getting his Zinc, Copper, T3, Cortisol, DHE and testosterone levels checked with blood work.  

Thank you FCHAWK for writing a detailed summary i've been eager to hear your feedback.

 
Quote
15 hours ago, Devolution said:

A person also said he saw his night vision and visual snow go back to normal while water fasting but once he ate again it reverted so I’m eager to try this myself as it would indicate a reversible change


Can you provide the research please? I'm interested in this as well. 

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Posted

Hi all,

Is there a document someone can send link that I can print off for:

”Post Accutane Syndrome”? PAS

I thought I saw a document but I can’t find what page it’s on?

I want to share it with a kinesiologist I’m about to see this week.

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Posted
4 hours ago, Biggest Brother said:

Hi Guys, 

Lots of great material i've been reading from this thread I appreciate the findings. I'd like to know your thoughts on my brother who is experiencing this issue. He is 26 years old, nurse working in the ER. 

Context:  It's been about 2 months so far, he took 1 dose at 20 mg and stopped. Within two hours of taking the one dose he started to feel his body change. He explains that he feels, brain fog, dry eyes, dry skin, joint pain, anxiety, depression, and suicide. When I asked him to describe the pain he says the biggest issue is his eyes always feel like there is sand in it. That when he wakes up his eyes feel like they were never asleep. 

Action Plan: So far we found a natural path who has got him on a bunch of supplements such as, multi-vitamin, zetox, berberine, and about 6 other natural supplements (sorry I'm not at his house at the moment so i can't see the rest) He's been getting massages, runs daily, acupuncture. So far it's been two weeks on this detox program he's mentioned that his bowel movements have become much more regular than when he took accutane(1st month). And sorry it's not accutane but the generic version of accutane in the states. 

While coming up with our own action plan initially our first  theory we was that the accutane was every where in his body and it needed to find a type of food while digesting to bind to while excreting it from his body. This seemed logical because he started to have more regular bowel movements, but he started to notice that his body doesn't seem to be absorbing the tremendous amounts of water hes been drinking.

Results so far:  There were two days out of the 2 month period where he said his eyes were burning, but recently he says that his eyes have felt like they're getting better. As mentioned, his bowel movements have become much more regular.  However, we do continue to go through these mood phases  "confident it will leave", to the initial mood type of "depressive anxiety, and the biggest is anger". I almost feel like he cannot get past a mental block. 

So far i've reached out to everyone locally, a handful of derms all of which said that accutane side effects only have a two week half life and should leave the body soon(yikes they have no idea about how many patients are going through this) I'm considering speaking to oncology department to see if they can provide me with more insight (perhaps suggestions about what onocology patients do to recover from cancer treatment). I've reached out to a doctor that claims fasting will work but very dangerous(we're against this). Lastly, I found someone named Lewis Rowlands in the UK who has experienced the same symptoms my brother has gone through and claims to be fully recovered and reverted his symptoms. So we've gone forward with his strategy of providing a hair analysis and will circle back with an action plan. 

Lastly, after seeing videos and doing research, I did suggest to the natural path if zinc would be good for him and 4 days after taking the multi vitamin with zinc he mentioned that his eyes felt better. Not sure if that's a direct correlation, but im playing with a theory that his mineral levels are all off and the slightest vitamin % adjustments could be that much more effective. Some how acupuncture seems to be effective I just can't figure out how. One of the pain management providers I spoke with told me that he had a patient that had permanent nerve damage, sought out a acupuncturist in china that was able to heal  him 100% whole. 

My goal is to document as much of this process as I can and to share my brothers experience and story with as many people considering this drug because the numbers published are simply skewed when it comes to side effects.  I browse reddit to see all these people with success before/after photos but internally i hope theyknow they might be paying for it years later. Is that really worth it? Quality of life will suffer dramatically.  

Looking forward to the feedback and support! 

Update: We've found another natural path that has a different approach to the previous natural path. We will still treat this holistically as a systemic problem however, we will first focus on complete detox of the liver and then address individual issues(eyes) after the liver has been completely detoxed. She has also got him using Taurine. He will also be getting his Zinc, Copper, T3, Cortisol, DHE and testosterone levels checked with blood work.  

Thank you FCHAWK for writing a detailed summary i've been eager to hear your feedback.

 

Can you provide the research please? I'm interested in this as well. 

Hes having a Major Depressive Episode by the sound of it (if hes suicidal). 

Get him help which is aimed at treating this. CBT or MBCT are supposed to be good.

Hes a nurse - tell him to treat himself to the same standard as he would treat his patients, with Evidence Based Medicine.

I would not obsess over 20mg of Accutane. 

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Posted (edited)
On 7/2/2018 at 8:59 AM, Biggest Brother said:
Quote
On 7/1/2018 at 5:18 PM, Devolution said:

 


 


Removed by author.

Edited by Deleted Account

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Posted
4 hours ago, Benjamin94 said:

Hes having a Major Depressive Episode by the sound of it (if hes suicidal). 

Get him help which is aimed at treating this. CBT or MBCT are supposed to be good.

Hes a nurse - tell him to treat himself to the same standard as he would treat his patients, with Evidence Based Medicine.

I would not obsess over 20mg of Accutane. 

We're trying to get him the help he needs. I've gone with several approaches so far and the self treating patient is one of them. Doesn't seem to stick. 

As far as the 20 mg dosage goes, almost 99% of people we've spoken to has said the same thing. However, I can't understand what he's feeling so maybe it is worse than we think it is or could be. Thankfully we're catching it soon but him reading into the internet doesn't help and also being a nurse doesn't help. I'm sorry what is CBT and MBCT short for? 
2 hours ago, Devolution said:

It was just anecdotal evidence some guy posted, I can't remember what forum it was on, I think maybe propeciahelp. So it might or might not work, only way is to try it i suppose.
 
I heard that this could work. I found a Dr. Loren Lockman I think his name was. That claims he has a program that has helped many accutane patients via fasting program of his, however I think there was a major reason why he moved his clinic to costa rica instead of being in the states...I think almost a good majority of practitioners I spoke to claim that fasting does work but you're almost doing it to the point of death to trick your cells in to regenerating at a faster rate. I'm not for this at all.

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Posted
@Biggest Brother I think the panic of taking Accutane probably triggered it, rather than a single small dose of accutane.

CBT = Cognitive Behavioural Therapy
MBCT = Mindfullness Based Cognitive Therapy

They are both talking therapies for Depression.

As for fasting. It doesnt work. It makes you ill - not healthy. Water Fasting is an amazing way of losing weight, but is horrible to endure. Dry Fasting is a fantastic way of putting yourself into self-induced Renal Failure.

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Posted
On 6/30/2018 at 8:11 PM, TrueJustice said:

I’ve done a lot over the years - shit loads of time/money and effort.

I studied yoga full on for 10 years and applied myself but continued to get worse with sore joints etc so I’ve minimised yoga these days - mainly just do restorative postures to ease back and help relax. I’m grateful for what I learnt in yoga.

As much as I suffer fatigue I do about 4 X 40 minute exercise bike activity and I’m back into jogging lightly and do light weights. Regardless of issues I’ll always recommend exercise as it improves sleep and helps with depression- for me anyway 

I don’t smoke, do very little alcohol.
Diet isn’t perfect and I do watch what I eat more so these days. Haven’t done any extensive water fasting, maybe a few days of fasting as part of liver detox but not over a week.

I’ve done the Moritz liver/gallbladder cleanse by the book about 5 times. Got results and then started to see none of the stones on the last 2 so figured my liver was clean.

Ive done kinesiology plenty of times which has provided relief for my brain fog issues but nothing has brought back my health - it’s all a bandaid up till now I hate to say. Having said that I’m going back for some more this week after having not done it for 3-4 years. My brain fog and irritability are just too acute at the moment to do nothing.

I’ve given the body every chance possible including letting time heal it but it’s not happening I’m afraid to say. You just learn to cope.

oh yeah - I’ve also seen world leading gastroenterologist that didn’t find anything nasty going on in gut or bowel. Although he did find herniated esophagus for which I take “patriot” to control stomach acid - it works and I’ll probably be on it for life.


 


Didnt you say at one time you had fatty liver?

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Posted (edited)
On 7/2/2018 at 7:37 PM, Benjamin94 said:

 

Removed by author.

Edited by Deleted Account

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Posted
1 hour ago, Chris16 said:

Didnt you say at one time you had fatty liver?

Yes, ultrasound did conclude a fatty liver about a year ago. No stones found though.

Also cholesterol has been high at times.
This can be controlled with diet - to a point.

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Posted (edited)
On 7/2/2018 at 7:37 PM, Benjamin94 said:

 

Removed by author.

 

 

Edited by Deleted Account

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Posted
9 hours ago, Benjamin94 said:

CBT = Cognitive Behavioural Therapy
MBCT = Mindfullness Based Cognitive Therapy

They are both talking therapies for Depression.

As for fasting. It doesnt work. It makes you ill - not healthy. Water Fasting is an amazing way of losing weight, but is horrible to endure. Dry Fasting is a fantastic way of putting yourself into self-induced Renal Failure.

@Benjamin94 Thanks, I think i'll look into fasting a bit more, but i'd prefer not to have my brother try it.

Right now he's going to start neurofeedback to help with depression and coping skills.
7 hours ago, Devolution said:

Fasting can get rid of scars and promote healing, it works for some people, I should be doing a 10 day fast soon enough. Everyone to their own.

@Devolution Curious to hear how the fasting goes, Im sure it varies from person to person, but what program are you going to follow?

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Posted
9 hours ago, Devolution said:
Fasting can get rid of scars and promote healing, it works for some people, I should be doing a 10 day fast soon enough. Everyone to their own.

Im a fan of fasting, particularly intermittent fasting, something like 16 and 8. It's definitely helped me through some hard times. Any one that's interested should check out the process of autophagy, some guy won the nobel prize for his work on autophagy. 
I would recommend Dr Jason Fung's books and YouTube videos to learn about fasting. There is a film that came out last year too which is good. I do wonder why fasting has helped me so much much and now im starting to think it helped me deplete my retinoic acid stores.

Thanks,
Lee 

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Posted
2 hours ago, marshl1 said:

I do wonder why fasting has helped me so much much and now im starting to think it helped me deplete my retinoic acid stores.


What kind of symptoms did you have that you noticed went away after fasting? What fasting program did you follow? 

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