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Repairing the long-term damage from Accutane

 
MemberMember
8
(@dthtodrmtlgsts)

Posted : 09/07/2012 5:53 am

On 9/7/2012 at 3:09 AM, JosephBuchignani said:

Sup guys, I took a B Vitamin that I got by accident for free, and boom my energy level shot up and stayed up the rest of the day. It was almost as big an effect as UDCA. This was a day where I had weak sleep. Yet it didn't matter. Very impressive.

Dunno if it has anything to do with Accutane. Plausibly so I guess - Vit A and Vit B? Anyway it's worth a shot. I don't think multivitamins give the same effect due to absorption issues. You should try a regular off the shelf Vitamin B supplement.

I have done some research on b-vitamins and isotretinoin.

Isotretionin significantly lowers folate and B-12 levels in EVERYONE that takes it. This is proven in several studies in pubmed, and one article also stating it could be the reason for some of the sideeffects!. Depending on dosaga, duration, genetics, lifestyle, a drop in these levels could cause big problems, and problems getting the levels back up again if the stomach is not working properly.

I feel really odd after taking a big dose of the b-vitamins, after some time 15-30 min i start to feel good, like myself before i touched tane, but it never lasts, still fucked up early in the morning.

I used "Solaray mega B stress", and it clearly has a effect on me, and i suspect it is the b12 or folate in it that does it. It contains plenty of all B-vitamins.

I did not feel any effect of the vitamins with other brands, and the thing about this product is that it is very strong in every pill. 900% of daily recomended dosage.

The problem with this product and any other product i can find without prescription is that it contains a very low quality b-12 type called cyanocobalamin. The body has to transform the chemicals(cyanid beieng one of them) to real b-vitamin that the body can use. EVERY study done on the quality of b-12 vitmains prove this chemical form of the vitamin to be almost useless compared to other forms. Unfortunately the cyano form is dirt cheap to produce and most factories therefore prefer to produce this form.

Methylcobalamin is the preferred form. And it almost seem like it is beieng hidden from the general public. None of my docs have heard of it either. Last time at my doc i tried to explain the differences of the b-12 forms. But i did not get through:( The doctors feel threatened or something when i try to lecture them.

Methylcobalamin is a natural form of the vitamin found in the body, greatly able to pass blood/brain barrier- unlike cyano. It is even proven to bypass the digestive system(good in our case since it doesnt work well.) There are sublingual methylcobalamin types that gets directly absorbed from under the tongue. One type og sublingual methyl is called mecobalamin. It has been used with succes in chronic fatigue syndrome, even in norway. But most doctors are not very dedicated to research and keep pushing the old shit until they are told by someone with authority to do something else. I have been unable to find a doc to prescribe it too me jet.

Another big problem with getting the prescription is that the drug is not registered in the docs database of known drugs, the doctor have to write an aplication for giving it. (Like with accutane). Why the hell the only good form of a vitamin has been put on such restrictions one can only speculate, but CASH is in the pharmalogical industry is atleast my guess. If this works, it would probably also work for a lot of different issues aswell, i believe MANY people have the wrong diagnosis chewing drugs they dont need.

I was in England, London trying to aquire it, the pharmacies told me they had newer heard of it there either. But they had the hydroxy form, which is better than cyano, but still not good.

In sweden however they do have it, and it is not on prescription, can be baught in health stores. Saving cash for my next trip there going to buy it.

Ugh, and dont get me started on how to test the b12 levels [Edited image out]The doctors are doing it wrong:P

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MemberMember
91
(@josephbuchignani)

Posted : 09/07/2012 6:20 am

Makes sense to me. Vitamin B, chronic fatigue, etc. Have you tried B-12 shots? That's like the next level. Oral works well for me. Maybe you have other dietary deficiencies that prevent you from benefiting from the B.

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85
(@and1)

Posted : 09/07/2012 7:59 am

I'm mainly a lurker on here, but I'd like to tell you about the things that worked for me in recovering from Accutane. My side effects were never that bad... mainly hair loss, with a little bit of dry skin, dry eyes, headaches, IBS, and fatigue. But now, I am happy to say that these aren't really that bad anymore. Now I only lose hair when I'm super stressed or haven't slept well. Oddly, my hair texture has changed a lot post-Accutane. It's a lot curlier than it used to be.

 

I'm beginning to think that Accutane is nearly out of my system. Why? My skin and scalp are getting oily again. Not as oily as before, but oily. And my stools are getting healthier.

 

 

These are the things that have helped me:

 

Taurine. This is my #1 best friend. During the summer, I went off of Taurine for a couple of weeks, my acne came back, and my hair started shedding again. Taurine helps your body to process fructose and Vitamin D, and helps regulate Vitamin A. Taurine contains sulfur, which helps the liver to produce bile.

 

Prenatal vitamins. I told my doctor about my Accutane problem. She seemed skeptical, told me I just had a poor diet and put me on these. But these have worked wonders. They contain megadoses of B vitamins (all balanced out), plenty of iron and zinc and good stuff. B vitamins increase stomach acid production... sugar causes your body to lose B vitamins.

 

D3. I take it in the morning, with food. Accutane depletes Vitamin D. Vitamin D strongly protects against Vitamin A toxicity. Makes me more awake.

 

 

 

At what dose are you taking taurine and D3? There is somebody in the holisitic forum who swears by taurine, I tried it bevore and did not experience anything noticably, but want to try it again.

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MemberMember
8
(@dthtodrmtlgsts)

Posted : 09/07/2012 9:49 am

Makes sense to me. Vitamin B, chronic fatigue, etc. Have you tried B-12 shots? That's like the next level. Oral works well for me. Maybe you have other dietary deficiencies that prevent you from benefiting from the B.

 

 

I feel benefit from Oral cyano form also, as long as it is strong enough. like 9x daily dosage that is in the mega-b stress. But the cyano form is inferior. Reading about it makes me really want to get the methyl form as it is so much better. The cyano form is based on chemicals, one of them being cyanide, that cannot be good, especially in large doses.

Reading other peoples experience with the methyl form is really convincing. Some had been supplementing cyano form for a long time with limited benefit. Changing to methyl made a big difference.

 

 

With the shots they often use the cyano form which is not the active form in the body, the body still has to convert what little part it can in the liver, the shots can also have some sideeffects, which might be due to the cyanide and preservatives(althogh rare). The methyl form is the real stuff, no conversion, straight to action. Absorbed directly, no further processing required. Shots with cyano have been tested alongside sublingual methylcobalamin. The mecobalamin kind, and there were better results with the methyl form and in smaller dosages than with the cyano.

 

 

The reason i stopped taking cyanobalamin was not because i did not feel any effect(it definately had effect), but i did not like my liver processing that much cyanide, and that i did not get permanent results. I also feel weird for some time taking it, but feel good after some minutes.

The cyano form has also not been proven to cross blood/brain barrier like the methyl do. Some research suggest you might not get all the benefits even if your serum levels go up. Low b12 has also been found in the spinal fluid of people with similar symptoms, illness, Chronic fatigue syndrome. They report great benefits from continous use of the methyl form even if their serum levels are sky high. Serum is wrong way of meassuring even if it is the classic way of doing it.

 

I have tested low, but within "normal" serum range on b12, just above 200 now. I dont want to fill my levels with sub-quality stuff, i want the real deal. I really dont believe in the serum levels, but unfortunately most doctors where i live does. Have to wait for it to drop to 170 before they will consider doing anything.

 

I dont believe we are the first ones coming up with b12 as a possible solution, as roche has disabled people for decades. BUT i think the methyl form and large doses are something new. There has been quite som research on the forms of b12, meassuring tequnics, and isotretionin vs b12. If one puts them together..

 

The research on depleted b12 and folate after isotretinoin + Our sideffects + Research on low b12 sideffects + The way normal general practitionairs meassure it(FAIL) + Other illnesses benefitting of b12 (especially the methyl form) + the research on cyano vs methyl (docs sell cyano. FAIL)+ the research on the bad things that b12 supplementing fixes(especially the methyl form)CFS etc. = worth trying!

 

A funny thing: the most commonly reported sideeffect of big dosages of b12 IS ACNE!

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MemberMember
157
(@chico-esposito)

Posted : 09/07/2012 10:01 am

@dthtodrmtlgsts

 

Just go on amazon.co.uk jarrow formulas sells the Methylcobalamin version of B12 it's called (Jarrow Formulas methyl- B12) swanson, solgar and natural factors also sell Methylcobalamin b12 as well. Garden of life do a RAW B12 which i'm sure is excellent as their RAW D3 is the best i've ever tried.

 

@sbowlchica

 

"D3. I take it in the morning, with food. Accutane depletes Vitamin D. Vitamin D strongly protects against Vitamin A toxicity. Makes me more awake."

 

Totally agree with this. I've took taurine in the past i've heard it mitigates hypervitaminosis A style symptoms.

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157
(@chico-esposito)

Posted : 09/07/2012 11:05 am

@dthtodrmtlgsts Have you got the research on accutane's effect on B-12 and folate? not questioning you, i'd just like to read it. Also what kind of dose would you recommend 5000mcg and above?

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157
(@chico-esposito)

Posted : 09/07/2012 11:40 am

Vitamin D works symbiotically with vitamin A, you always see foods in nature that have abundant retinol also contain high levels of vitamin D, liver, dairy, eggs, fish etc all contain enough vitamin D to counterbalance the vitamin A.

 

The crux of the problem is that a form of vitamin A, retinoic acid, weakly activates the vitamin D response element on the gene and perhaps blocks vitamin D's more robust activation. In fact, the authors of a 1993 study state "there is a profound inhibition of vitamin D-activated...gene expression by retinoic acid."

 

The key is having the proper ratio of vitamin D to vitamin A in your body. To obtain this proper D/A ratio, you must make a choice. (1) Either obtain the D/A ratio Nature intended-that is, the ratio the human genome evolved on - or (2) assume one knows better and intervene in a closed system, bypass the controls in the intestine, and inject active A directly into your blood by taking vitamin A or cod liver oil. Vitamin A production is tightly controlled in the body, the source (substrate) being carotenoids from vegetables in your intestine. The body uses these carotenoid substrates to make exactly the right amount of retinol for your body. That is, it is a closed, tightly regulated, system, one designed to perfection by Nature. When you take vitamin A as retinol, such as in cod liver oil, you intervene in this closed system and bypass the controls. Proceed at your peril.

 

 

What the study reported is a powerful inhibition of vitamin D gene expression in people with high amounts of retinoic acid in their bodys. Also the point on carotenes is right, you cant overdose on carotene because the body makes just the right amount of retinol from the carotene regardless of the amount you take. It's a system the body has under lockdown, when you intake very high amounts of retinol or in accutanes case a synthetic retinoic acid, it disrupts the system entirely and you develop hypervitaminosis A but not in the normal sense of the word, because accutane is not retinol, it's retinoic acid.

 

So it has different effects although the hair loss, inability to gain weight, eye sensitivity, joint / bone problems kind of the same.

 

In my experience i can eat carotene fine, unless it's stupidly high amounts of carotene like carrots, acai etc. I don't think my body is actually using the carotene to create retinol, because it already has a huge abundence of retinoic acid in the form of 13 cis retinoic acid (accutane) in my cells (the cause of all the side effects) When i eat retinol in the form of dairy or eggs, our bodies have no choice but to use the new retinol so it displaces the accutane. The displacement of the accutane is what takes us out and compounds all the side effects making us feel worse.

 

Vitamin D mitigates some of the side effects because it acts as a co factor and protects from the symptoms of hypervitaminosis A.

 

Vitamin A competes with vitamin D directly at the receptor site. When vitamin A levels are too high, the two retinoic acid molecules bind to each other instead of one vitamin A molecule binding with one vitamin D. When the two vitamin A molecules bind with each other, as occurs with high doses of vitamin A, the two vitamin A molecules then bind to the Vitamin D receptor and weakly stimulate the receptor, and may act as a weak agonist. But, weak agonists block the function of receptors, preventing the vitamin D from working.

 

Basically retinoic acid in high amounts will bind to itself and enter into the vitamin D receptor and stop vitamin D from being able to be absorbed. It also binds to the thyroid receptor and any other fat soluble hormone receptor. Just like other fat soluble toxins, they destroy the thyroid and the glands, mess up hormone function, and mess up fat soluble vitamin absorbtion and utilisation.

 

  • Isotretinoin, or 13-cis-Retinoic Acid (Accutane in the USA), is a retinoid used in severe acne and rosacea as well as in cancer chemotherapy. It may have the same effects on the vitamin D receptor as other retinols. It certainly interferes with vitamin D metabolism.

 

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MemberMember
157
(@chico-esposito)

Posted : 09/07/2012 12:05 pm

"Thyroid hormone (T3) and retinoic acid (RA) receptors regulate transcription of the rat growth hormone (GH) gene through binding to a common hormone response element (HRE) in the promoter. "

"tri-iodothyronine (T3), vitamin D3 and retinoic acid (RA) in the control of leptin secretion,"

"All-trans retinoic acid can specifically increase receptor mediated intoxication of ricin A chain immunotoxins more than 10,000 times, whereas fluid phase endocytosis of ricin A chain alone or ricin A chain immunotoxins was not influenced by retinoic acid. The immunotoxin activation by retinoic acid does not require RNA or protein synthesis and is not a consequence of increased receptor binding of the immunotoxin. Vitamin D3 and thyroid hormone T3, that activate retinoic acid receptor (RAR) cognates"

 

Vitamin D3, retinoic acid, and T3 one of the two thyroid hormones (the other being t4) are all linked in cell differentation, effects on DNA etc. Retinoic acid in abundance can bind to the vitamin D receptors and can also bind to the T3 cell receptors affecting their function. Causing hypo or hyperthyroid and effecting other things like steroid hormone abnormalitys because they all share common nuclear receptor sites.

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27
(@sbowlchica)

Posted : 09/07/2012 2:06 pm

 

At what dose are you taking taurine and D3? There is somebody in the holisitic forum who swears by taurine, I tried it bevore and did not experience anything noticably, but want to try it again.

 

 

 

I only take 500 mg of taurine per day, but I'm tiny. (5'3'', 100 lb.) I used to take 1000 mg per day whenever I cheated and ate something particularly fructose-heavy, but I don't cheat anymore. :) I've been taking it for almost a year, so it's had some time to work.

 

I was going to up my dosage to 1000 mg every day, but one of my good friends (who's a pharmacy major) told me it could actually CAUSE hair loss... I don't remember the specifics, but since the dose I was taking was already working, I decided to stick to that.

 

I take 2000 IU of D3. I always take that, the taurine, and the prenatal with a full-fat meal, usually breakfast or lunch (D3 is fat-soluble, so it works better that way.)

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21
(@aharon)

Posted : 09/07/2012 2:20 pm

There is no cure.

 

If you've gotten hit hard enough - and Indigo, it's amazing how much you sound like me, truly freaky at times - then your body is permanently altered by accutane.

 

The only thing that might work - Luck might do it. You could get lucky with some treatment, or have some quirk like 'drink more water and play sports', always my favorite for structureless cures.

 

Otherwise you should move to Hawaii if you can. Chill. Get out in the sun. Forget about regular life. It's over.

 

Now that you're different from taking accutane, the question is what are you going to do?

 

I've been at this for 25 years. Reading you guys trying to be better is like watching a rat running and running in circles, stuck in the cage. And I was there. Sometimes I still am.

 

I've done everything you guys did long before the internet. Yet everyone seems inclined to go down the same path, always reading about supplements again and again.

 

It's really surreal to read.

 

My advice is give up and go somewhere where you have the least concerns possible.

 

Beach time!

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MemberMember
85
(@and1)

Posted : 09/07/2012 3:45 pm

On 9/8/2012 at 3:06 AM, sbowlchica said:
Quote

At what dose are you taking taurine and D3? There is somebody in the holisitic forum who swears by taurine, I tried it bevore and did not experience anything noticably, but want to try it again.

I only take 500 mg of taurine per day, but I'm tiny. (5'3'', 100 lb.) I used to take 1000 mg per day whenever I cheated and ate something particularly fructose-heavy, but I don't cheat anymore. [Edited image out]I've been taking it for almost a year, so it's had some time to work.

I was going to up my dosage to 1000 mg every day, but one of my good friends (who's a pharmacy major) told me it could actually CAUSE hair loss... I don't remember the specifics, but since the dose I was taking was already working, I decided to stick to that.

I take 2000 IU of D3. I always take that, the taurine, and the prenatal with a full-fat meal, usually breakfast or lunch (D3 is fat-soluble, so it works better that way.)

When do you take taurine, do you take it in the mornings or in the evenings, on empty stomach with food?

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MemberMember
27
(@sbowlchica)

Posted : 09/07/2012 4:24 pm

I take taurine late in the morning with breakfast. Most websites tell you to take it in the evening, because it has a bit of a sedative effect on the brain. I tried to take it in the evening, but I couldn't sleep and wound up with a lot of energy. Even though it has a sedative effect on the brain, it increases your heart rate. Weird.

 

I haven't noticed any side effects. Some people take it as a mood stabilizer. I guess I've been calmer, but there's really no way to measure that.

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91
(@josephbuchignani)

Posted : 09/08/2012 3:38 am

I don't know why you're telling people to give up. Some get discouraged and move on; some find cures / coping regimines and move on.

 

Vitamin B has been a tremendous boost for me. I'm much more resilient, although I still need sleep to a lesser extent.

 

I expect a return to essentially normal after adding in the digestive enzymes. As in, a normal person's resiliency and dietary range.

 

Normal people have off days. I want to be better than normal, in terms of performance.

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143
(@indigorush)

Posted : 09/08/2012 5:09 am

There is no cure.

 

If you've gotten hit hard enough - and Indigo, it's amazing how much you sound like me, truly freaky at times - then your body is permanently altered by accutane.

 

The only thing that might work - Luck might do it. You could get lucky with some treatment, or have some quirk like 'drink more water and play sports', always my favorite for structureless cures.

 

Otherwise you should move to Hawaii if you can. Chill. Get out in the sun. Forget about regular life. It's over.

 

Now that you're different from taking accutane, the question is what are you going to do?

 

I've been at this for 25 years. Reading you guys trying to be better is like watching a rat running and running in circles, stuck in the cage. And I was there. Sometimes I still am.

 

I've done everything you guys did long before the internet. Yet everyone seems inclined to go down the same path, always reading about supplements again and again.

 

It's really surreal to read.

 

My advice is give up and go somewhere where you have the least concerns possible.

 

Beach time!

 

 

Hey man.

 

While I can understand why you would be saying this after 25 years, I just cannot stop fighting for my health.

When I read 'Never Fear Cancer Again', I remember being filled with hope.

The author opened the book by talking about how the medical industry nearly killed him.

He developed side effects and poor health because of the medications he was taking.

He had autoimmune disease(s). I remember Sjogrens Syndrome being one of them - I still suspect this one being a problem for me.

It's a really good book and mainly talks about how diet/detoxing/having faith was the answer to his problems.

 

I don't know about you, but I've never been able to stick to a really healthy diet.

I get tempted in the supermarkets and my Mum fills our cupboards with tasty crap.

I eat a fair amount of fruit/veg/salad, but lately I've been eating a lot of the 'tasty crap' too.

Had a pack of skittles and malteasers yesterday.

Don't know why, because I don't enjoy them like I used too.

Particularly sweets.

I'd much rather have something that tastes good, and is good for me too.

 

Anyway...

After 25 years, I'm sure it's almost impossible to feel good about your situation, and life in general.

But, this drug has been prescribed to so many people.

I'm absolutely sure that the truth will come out soon (perhaps not too long after the documentary).

When it does, there might be some testing, and perhaps we will find out exactly why we have these side effects.

 

Personally, I don't think anything is incurable (though I'm not saying we can re-grow limbs or anything).

I think Nature looks after us, and heals us, if we allow it to.

I think we have a lot stacked against us, so it's easy to get stressed and caught up in how bad things are.

But I also believe that stress and tension is what makes us worse, or at least stops us from entering 'healing mode'.

 

Regardless, we need to be enjoying ourselves now.

I've come to realise that EVERYONE has their own story.

I don't know if anyone ever made it through life without some tough challenges.

 

For me, technology can really make me feel stressed out.

My girlfriend (yeah, fucking back with her) does my bloody head in a lot of the time.

She texts me far too fucking much, and my phone is a piece of shit, and I really can't be bothered with it.

I feel a lot better when I take a breather in those agitated moments, and just have a walk by myself around the field (without any music too)

I leave my phone at home so I won't get pulled in to arguments/pointless conversations.

Maybe I'm a bit of a loner, but I like being introverted and not having to do anything for anyone else.

It's important to be selfish sometimes.

 

I say all this shit over and over, but I think it's important to keep our lives running despite our health.

I do worry though.

I feel absolutely shattered every single morning.

Can barely open my eyes and feel worse than before I went to bed.

It's ridiculous.

 

But, I think partly it's my fault.

I snack at night.

Half ten the other day, I had some Pizza.

 

Going to bed at 11pm or later probably isn't good.

I think our body appreciates a routine.

10pm every day, with a bit of light reading before hand is probably a very good idea.

 

I've been having dippy eggs and 'soldiers' (toast cut into strips) for breakfast and they keep me full.

Eggs are great.

Fuck the whole worrying over Vitamin A.

Don't give a shit.

They're healthy, and if it makes me worse, I really couldn't care less right now.

I'm not going to avoid healthy food for the rest of my life.

 

But yeah, a beach would be rad.

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MemberMember
12
(@user116745)

Posted : 09/08/2012 5:17 pm

Hello everyone. I am back already.

I feel motivated to share how my diet is going for me. Well so far, great.

The move from an acidic diet, which what I have had for my entire life, to a more alkaline diet, is really helping me in my opinion.

I am breaking down the built up mucous all throughout my body. It is becoming much easier to breathe, stretch, flex, move, sweat, sleep.. Everything is becoming easier to do and feels better. I feel more calm.

I am losing bad weight and becoming more lean.

I could go into much more detail about things I am experiencing but don't want to. I want to keep it short and simple.

I am eating only organic raw fruits, vegetables, nuts and seeds. I focus on chewing my food until it is a liquid. I am staying hydrated, drinking water with lemon juice in it often.

I am not completely set on eating only these foods. So far it is working well. I may or may not start eating meat/fish again. I will continue to research, experience, and experiment to find a good balance.

Here is a video of me working out today. I normally do this naked but spared you guys the sight by putting on my old rugby shorts. Oh, and that thing in my hair is string to keep the hair out of my eyes.

It felt so good. After I was done working out, I cried tears of joy.

[Edited link out]

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MemberMember
143
(@indigorush)

Posted : 09/09/2012 3:10 am

You normally do sit ups naked?

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MemberMember
12
(@user116745)

Posted : 09/09/2012 9:52 am

Yes.

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0
(@dcrangersfootballclub)

Posted : 09/09/2012 7:07 pm

Hello everyone, i haven't really posted much on this thread because i haven't had many replies, i'm always looking over it though to see how you are all getting on, i wish you all the best of luck on recovering from the side effects accutane has caused. Now please take time to read my story. Basically i took the drug in November 2011 for 5 months and developed ear myoclonus. You will be wondering what this actually is but i think i must be the only person who has ever took accutane to develop ear myoclonus. This is thought to be caused by drug poisoning and chemical reaction to the body (accutane). To give more detail on what it actually means. Ear myoclonus mostly involve the tensor tympani muscles located within the middle ear. The tensor tympani signs occur when the muscles are in a tensed state. This causes the tympanic membrane to become tensed as well. This causes the vibration and volume in the middle ear to reduce. Thus, the tympanic tensor symptoms include hearing sounds that are similar to chewing sounds. Sometimes middle ear evidences also include feeling butterflies or other insects fluttering within the ear. This may be due to the contraction of tensor tympani muscles leading to these sounds. This is really frustrating for me to deal with each day i am only 18 and have heard the only effective way to cure ear myoclonus is to have surgery to cut the tensor stapedial muscles. I have an appointment with a neurologist in October, i have also heard supplements such as magnesium and zinc can be effective, does anyone have any advice ?.

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MemberMember
12
(@user116745)

Posted : 09/09/2012 11:07 pm

Hello everyone, i haven't really posted much on this thread because i haven't had many replies, i'm always looking over it though to see how you are all getting on, i wish you all the best of luck on recovering from the side effects accutane has caused. Now please take time to read my story. Basically i took the drug in November 2011 for 5 months and developed ear myoclonus. You will be wondering what this actually is but i think i must be the only person who has ever took accutane to develop ear myoclonus. This is thought to be caused by drug poisoning and chemical reaction to the body (accutane). To give more detail on what it actually means. Ear myoclonus mostly involve the tensor tympani muscles located within the middle ear. The tensor tympani signs occur when the muscles are in a tensed state. This causes the tympanic membrane to become tensed as well. This causes the vibration and volume in the middle ear to reduce. Thus, the tympanic tensor symptoms include hearing sounds that are similar to chewing sounds. Sometimes middle ear evidences also include feeling butterflies or other insects fluttering within the ear. This may be due to the contraction of tensor tympani muscles leading to these sounds. This is really frustrating for me to deal with each day i am only 18 and have heard the only effective way to cure ear myoclonus is to have surgery to cut the tensor stapedial muscles. I have an appointment with a neurologist in October, i have also heard supplements such as magnesium and zinc can be effective, does anyone have any advice ?.

 

 

I know exactly what you are talking about. I have it as well. Fluttering is a very good word to describe it. Don't get surgery in my opinion, it can be fixed without that. Every time I exercise well and get blood and heat to my ears this symptom go away. Over time, as I become healthier, I expect this problem to go away completely.

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8
(@dthtodrmtlgsts)

Posted : 09/10/2012 3:44 am

http://www.ncbi.nlm..../pubmed/8494296

@dthtodrmtlgsts Have you got the research on accutane's effect on B-12 and folate? not questioning you, i'd just like to read it. Also what kind of dose would you recommend 5000mcg and above?

 

 

Im not sure on the dosage. 900% of daily recommended give me an effect on cyano. 100% i cannot feel at all. Methyl is to be absorbed much easier, i will just have to try it. Therapautical dosages have varried very much in the things i have read. Will have to read more about dosaging when i get a hold of it..

 

A quick search on pubmed gives me these, i have found several others also but sticking to pubmed now.

 

 

In this test they conclude that homocysteine is raised. B12 and folate is required to lower it, however the test did not show the vitamin levels dropping. If they had tested the vitamin levels in more ways they might would have found this. Also if they retested some time after the treatment to give the body a chance to use the vitamins to clear the homocysteine.

http://www.ncbi.nlm....pubmed/18608712

similarly:

http://www.ncbi.nlm....pubmed/11277950

 

This test show lowering of the vitamins and raised homocysteine. Stating it could be the missing link for sideeffects.

http://www.ncbi.nlm....pubmed/22098008

 

again

http://www.ncbi.nlm....pubmed/16716177

 

 

vitamin A, retinoids, lowering of b12, folate, birth defects. I am not sure i understand this article 100% but i sure see a pattern!!!.

 

http://www.ncbi.nlm....pubmed/11277950

 

 

Holotranscobalamin test to reveal deficiancy of b12 is the most sensitive.

http://www.ncbi.nlm....ubmed/15720207/

http://www.ncbi.nlm....les/PMC2696961/

 

I dont know if importing methylcobalamin over the internet would work. It would probably be stopped in customs since it is prescription only here. But in sweden which is only a few hours drive from here, u can get it in regular healthshops. Also kind of unsure about supplements from internet, but if there are known quality brands i could try.

 

I have supplemented quite heavily on vitamin d3 before also after seeing some research on that. I started with a sunny vacation some while after accutane hell started, where i felt a lot better. Took vitamin d3 for a while after that, and swithced to liquid d3. There are d3 receptors everywhere so the liquid form is probably the best, i felt much better effect from the liquid form than the pillform. But after a while i started feeling funny when i took it. I checked my levels and they were quite high. The serum levels were checked after a few days after stopping supplementation(maybe i needed a bigger break to not have arifically high levels from supplements.)

Anyways since i felt better, and started feeling funny when i continued to take it, i stopped. That in addition to high serum levels. But serum levels might be a shitty way of meassuring it, havent read more about it. Should recheck my levels now after beieng of the D3 supplements for a while.

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(@chico-esposito)

Posted : 09/10/2012 8:05 am

@dthtodrmtlgsts the 3rd, 4th, 5th and 6th are the best studies. So homocysteine levels increase and that is a very effective marker for b12 deficiency. B12, B6 and folic acid are the best ways to bring it back in line. Thats interesting and thank you for taking the time to post that.

 

The D3 thing is right, usually taking 2000iu a day is a maintenance dose and can help mitigate some side effects without causing toxicity. I use garden of life RAW D3, but of course if your levels are 75 nmol/I and above don't take it. 50-75 nmol/I is the normal range.... I find it's better to take smaller doses of supplements over a longer time than take higher doses over a short period, Especially with fat soluble substances like Vitamin D.

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(@j-star-2)

Posted : 09/10/2012 8:35 am

I definitely think the homeopathic stuff is worth a shot! Best wishes to you!

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143
(@indigorush)

Posted : 09/10/2012 1:12 pm

Death to dermatologists dude.. (yeah, I decoded that)

I've tried the B12 supplement that Chico mentioned...

It's the correct form you mention, in a chewable tablet.

Did nothing.

Sorry.

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2
(@jamie10)

Posted : 09/10/2012 3:35 pm

Hey everyone, you should look into taking a good liver supplement if you are thinking of taking anything. I have recently come across these two:

 

livatone plus

glytamins

 

I think livatone plus seems the most economical option and looks really good! Lots of good stuff in there! :)

 

I wanted to ask if you guys have had similar experiences to me...

 

Almost every day, maybe once or twice, I get weird sensations in my face, lips, eyes and what feels like my scalp or just inside the skull...

 

My eyes actually get a bit blood shot so I think it is flushing, but my face does not seem to get red so not sure. I can't figure it out, it is not dryness because it comes for about 30 minutes to an hour and then fades away and I feel 'normal' (my version of normal feeling after accutane anyway) again.

 

Anyone know what may be causing this? What do you guys do to deal with any such symptoms? I am thinking it could be some form of allergy...

 

Cheers

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(@accutaneispoison)

Posted : 09/11/2012 12:58 am

i haven't posted in a while but i can say i've been taking spirulina as i stated earlier. It helps alot with energy. I have been taking like 7 grams a day in capsules and wow the energy it gives is great. I am going to keep trying to take more and see if that is potentially a cure. I have also been vaporizing cannabis and it helps tremedously with feeling good about life of course and i think it is slowly healing my body and my impotency. I wish everyone could see you that don't have to suffer. We deal with these horrible physical problems each day but if we can at least be partly happy to be alive mentally life is so much better. I mean i hate to be vulgar but having a completely broken penis shriveled up and ruined since 16 years has really hurt me, along with the fact that i feel 80 years old have almost no energy. But now i have finally accepted these things and i do my best each day to find happiness inside.Things have seemed to get a little bit better, so what i have realized is once you accept the things that happen you will be much happier. And if we do find the answers it will bring us even more hope and happiness for the future.

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