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hard to say what was happening first here, but ive seen the same description of sensations on this forum.
Possible drug induced disorder that's destroyed half my life. Help me ...
Feb 21, 2016 -At the recommendation of a doctor I triedPropecia(finasteride) for the hair loss. ... It showed I had auto-antibodies toganglionic neuronal AChR...
At a young age, I noticed some weird sensations. Feeling inside my head like my brain could pop; zaps that sort of thing.
just googled this as well.
Incomplete Recovery of Erectile Function in Rat after Discontinuation of Dual 5Alpha Reductase Inhibitor Therapy
http://www.jsm.jsexmed.org/article/S1743-6095(15)34026-1/fulltext
Conclusion
Discontinuation of dutasteride improved the relaxant responses to EFS and SNP, while cholinergic and adrenergic responses remained depressed.
and this.
I want to preface that my symptoms are/were severe. Ranging from mild annoyances like visual snow, palinopsia, tinnitus, headaches, muscle twitching to severe problems like sicca dryness, mental disorientation, fatigue, chronic muscle tightness causing sharp pains, GI dysmotility and intestinal pseudo-obstruction. I basically developed a brutal form of HPPD.
After some recent GI-related problems, I was tested thoroughly by a doctor looking for answers. By stroke of luck, I tested positive for something that explains very well a large portion of my symptoms. I have positive antibodies for Ganglionic ACHr (acetylcholine) alpha-3 receptor. Here's a paper with more detail: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764484/
1 hour ago, guitarman01 said:hard to say what was happening first here, but ive seen the same description of sensations on this forum.
Possible drug induced disorder that's destroyed half my life. Help me ...
Feb 21, 2016 -At the recommendation of a doctor I triedPropecia(finasteride) for the hair loss. ... It showed I had auto-antibodies toganglionic neuronal AChR...
At a young age, I noticed some weird sensations. Feeling inside my head like my brain could pop; zaps that sort of thing.
just googled this as well.
Incomplete Recovery of Erectile Function in Rat after Discontinuation of Dual 5Alpha Reductase Inhibitor Therapyhttp://www.jsm.jsexmed.org/article/S1743-6095(15)34026-1/fulltext
Conclusion
Discontinuation of dutasteride improved the relaxant responses to EFS and SNP, while cholinergic and adrenergic responses remained depressed.
and this.
I want to preface that my symptoms are/were severe. Ranging from mild annoyances like visual snow, palinopsia, tinnitus, headaches, muscle twitching to severe problems like sicca dryness, mental disorientation, fatigue, chronic muscle tightness causing sharp pains, GI dysmotility and intestinal pseudo-obstruction. I basically developed a brutal form of HPPD.
After some recent GI-related problems, I was tested thoroughly by a doctor looking for answers. By stroke of luck, I tested positive for something that explains very well a large portion of my symptoms. I have positive antibodies for Ganglionic ACHr (acetylcholine) alpha-3 receptor. Here's a paper with more detail: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764484/
Great findings. I really think we should shine some serious light on the autoimmune aspect of this problem. Guitarman I know you're not fully pro-prednisone but how about we try it together? (if we can manage to get our hands on some). If an improvement is seen then that's certainly a connection right? If we can get enough doctors to know that we miraculously felt better on corticosteroids then they have no choice but to dive in a little further into this mess. We're getting SO close.
I have my ENT appointment on the 13th. But I'm going to even try and get in before then. PRAYING he sees some sort of inflammation in vocal folds/ear.
Has anybody besides the troll lookein into Neuro Feedback yet? I'm beginning sessions on Monday. I think I mentioned that the QEEG (brain mapping done before Neuro Feedback) found abnormalities in the same areas I noticed problems in post Accutane (long term thinking/planning/motivation/emotional processing). I'll get back to you guys in a few weeks to mention if I have much success.
It's really disturbing those few moments where I realize just how much of my emotional personality, and ability I lost, so hopefully I can regain some of the ability to feel anything any more, or at least process information. Such a damn shame so many people are too stupid/wishy washy to realize the changes in themselves... Hopefully I can find something that works, and we can force it on as many accutane users as possible to teach them what they've lost.
Also, the pressure people mention is DEFINITELY correlated with the mental issues people have, especially considering that it occuredin the lower frontal cortex, and around the pituitary gland (atleast for me). The longer the pressure persisted, the more emotionless i became, and the less I felt like I had a personality.
Libido hasalso definitely with the head pressure. The weird thing is that sometimes before evrler taking accutane, I would get a similar weird pressure thing if I masturbated too much, but it wasn't frecuent/nonstop until I took Accutane.
That pressure sure as hell felt to me like something being stretched, scratched,and torn that shouldn't have been.
11 hours ago, Colinboko said:http://forums.phoenixrising.me/index.php?threads/cfs-temporarily-cured-during-common-cold.44123/still think this is real interesting ^
I have said this before - the same things happens to autistic kids.
Go and get homocysteine and glutathione checked.
I got my thyroid ultrasound from my ent. Just got the results. Normal. I also had a scope. Didn't notice anything significant. Except a dryness and lack of or thick saliva that could exasperate irritation.
I have had homocystine tested numerous times. It's been normal. Glutathione I don't believe is a standard test you can order from a doctor.
1 hour ago, guitarman01 said:I got my thyroid ultrasound from my ent. Just got the results. Normal. I also had a scope. Didn't notice anything significant. Except a dryness and lack of or thick saliva that could exasperate irritation.
I have had homocystine tested numerous times. It's been normal. Glutathione I don't believe is a standard test you can order from a doctor.
Didn't you say your ENT saw inflammation of your cords before though?
IVe got the increased pressure feeling as well... I've had an MRI which came back normal, but that doesn't measure pressure. I've never had a lumbar puncture, but my neurologist doesn't think I need one as she did the whole symptom and eye check. From memory, 'idiopathic intracranial hypertension' was a possible side effect of tane, but then again, what wasn't?
4 hours ago, mikez said:IVe got the increased pressure feeling as well... I've had an MRI which came back normal, but that doesn't measure pressure. I've never had a lumbar puncture, but my neurologist doesn't think I need one as she did the whole symptom and eye check. From memory, 'idiopathic intracranial hypertension' was a possible side effect of tane, but then again, what wasn't?
I've got an appointment for this too with the neurologist. Have you had your lumbar puncture yet? I'm getting mine next week. Of all the side effects, this is truly the worst one as it is daily and non-stop. If I can solve this one, I feel like I can live a somewhat normal life.
Hey guys,I know I haven't been in this forum for long, but if I can leave my 2 cents that can get your life back to normal let it be this:
It's true. The pain is real and sometimes constant. Symptoms will come and go and you'll never truly be "normal" again.What helped put things into perspective is that I spoke with my dad yesterday. I kind of broke down to him. I was worried about my deteriorating health, my future and I felt so helpless. My father then told me about my grandma who died of cancer and how she never lost her will to live until the end and she constantly fought for her life. I had a moment of understanding. Cancer is different than other illnesses because it's not a foreign object attacking the body, but the body itself destroying itself. That's why it's so hard to understand and cure. That's what accutane did to all of us. It's like an undiagnosedcancer. How do you cure the body from destroying itself? This is a form of cancer for me: cancer of the psych, of the mind. My own body is failing me, but it's important to constantly remind myself that even though the pain is real and constant, I'm still alive. I can still walk, talk, and I feel that somehow deep inside I'm still the same person. In essence, I'm not dead yet so I should keep fighting because life is a constant struggle against itself. At least that's my theory that I'll abide by. I kept reading about people trying all these herbal medicines or supplements to "cure" themselves of accutane to no avail. I don't want to go down that endless route to find no answers. I need to take care of myself: mind, body and spirit. I'm still alive, and I should remind myself of that.
I I know the pain is real and sometimes hard andlife becomes unbearable because of this. Trustme, brother, I know. I'm livingthrough this everyday. The mind is a powerful thing and it's probably what's causing all these side effects to some extent. Stop going down the rabbit hole. Take care of your mind; it's the most powerful thing you have control of and no doctor will ever understand it.Youhave to have astrong will because this is an up and down battle, butin the end you're still alive and focus on what you do have and the positives.
I love music, still do. Accutane didn't take away from me
I love literature and films, still do. Accutane didn't take that away from me.
I love nature: the trees, the birds, the sweet sound of the wind. Still do. Accutane didn't take that away from me.
In the end, take it one day at a time. Love yourself. Love life. Go to the doctor when you have symptoms and treat them when you can.Be strong.
Love you all. We're all suffering, but never lose hope.
7 hours ago, mikez said:IVe got the increased pressure feeling as well... I've had an MRI which came back normal, but that doesn't measure pressure. I've never had a lumbar puncture, but my neurologist doesn't think I need one as she did the whole symptom and eye check. From memory, 'idiopathic intracranial hypertension' was a possible side effect of tane, but then again, what wasn't?
Lately im starting to think some of that head pressure could be from a shrunken scull, I mean with all the other joint and bone issues going on, I'm sure the scull isn't immune to the changes.
Im not sure if the issue is from calcification or from stunted growth ie growth hormone or lack of??
As we know with tane, it affects everything, all organs including the skin so who would know.
Im currently taking Glutathione, nothing noticeable but it's only been a week, it's apparently high quality- pumped straight into mouth so other than injecting it, I can't do much more, if there's no result I'll assume it's not what I needed after 5 weeks or so.....
2 hours ago, Jorcruz24 said:Hey guys,I know I haven't been in this forum for long, but if I can leave my 2 cents that can get your life back to normal let it be this:
It's true. The pain is real and sometimes constant. Symptoms will come and go and you'll never truly be "normal" again.What helped put things into perspective is that I spoke with my dad yesterday. I kind of broke down to him. I was worried about my deteriorating health, my future and I felt so helpless. My father then told me about my grandma who died of cancer and how she never lost her will to live until the end and she constantly fought for her life. I had a moment of understanding. Cancer is different than other illnesses because it's not a foreign object attacking the body, but the body itself destroying itself. That's why it's so hard to understand and cure. That's what accutane did to all of us. It's like an undiagnosedcancer. How do you cure the body from destroying itself? This is a form of cancer for me: cancer of the psych, of the mind. My own body is failing me, but it's important to constantly remind myself that even though the pain is real and constant, I'm still alive. I can still walk, talk, and I feel that somehow deep inside I'm still the same person. In essence, I'm not dead yet so I should keep fighting because life is a constant struggle against itself. At least that's my theory that I'll abide by. I kept reading about people trying all these herbal medicines or supplements to "cure" themselves of accutane to no avail. I don't want to go down that endless route to find no answers. I need to take care of myself: mind, body and spirit. I'm still alive, and I should remind myself of that.
I I know the pain is real and sometimes hard andlife becomes unbearable because of this. Trustme, brother, I know. I'm livingthrough this everyday. The mind is a powerful thing and it's probably what's causing all these side effects to some extent. Stop going down the rabbit hole. Take care of your mind; it's the most powerful thing you have control of and no doctor will ever understand it.Youhave to have astrong will because this is an up and down battle, butin the end you're still alive and focus on what you do have and the positives.
I love music, still do. Accutane didn't take away from me
I love literature and films, still do. Accutane didn't take that away from me.
I love nature: the trees, the birds, the sweet sound of the wind. Still do. Accutane didn't take that away from me.
In the end, take it one day at a time. Love yourself. Love life. Go to the doctor when you have symptoms and treat them when you can.Be strong.
Love you all. We're all suffering, but never lose hope.
Love this. Everyone is fighting for the cure which is amazing! (And should be our ultimate fight.) But, if there's a way to treat symptoms and feel relatively normal and put this sucker into remission for a while then I think that can certainly help give us the strength to keep fighting for a cure!
27 minutes ago, TrueJustice said:Lately im starting to think some of that head pressure could be from a shrunken scull, I mean with all the other joint and bone issues going on, I'm sure the scull isn't immune to the changes.Im not sure if the issue is from calcification or from stunted growth ie growth hormone or lack of??
As we know with tane, it affects everything, all organs including the skin so who would know.
Im currently taking Glutathione, nothing noticeable but it's only been a week, it's apparently high quality- pumped straight into mouth so other than injecting it, I can't do much more, if there's no result I'll assume it's not what I needed after 5 weeks or so.....
In my case a CT scan was done and the doctors said it everything was "normal " I'm getting a lumbar puncture next week to measure the liquids in my skull for any abnormality. I doubt they'll find anything, too. I really think it's just something fundamentally wrong with the way my brain works that's causing this constant fogginess/pressure/pain in the brain.
7 hours ago, mikez said:IVe got the increased pressure feeling as well... I've had an MRI which came back normal, but that doesn't measure pressure. I've never had a lumbar puncture, but my neurologist doesn't think I need one as she did the whole symptom and eye check. From memory, 'idiopathic intracranial hypertension' was a possible side effect of tane, but then again, what wasn't?
yea basically I think of high blood pressure in the head. Some kind of vascular constriction.
Im getting my carotid arteries ultrasound tomorrow to see if there is anything getting pinched in the neck that could be constricting blood flow.
I sure hope not because if advanced, thats a very serious thing.
2 hours ago, Jorcruz24 said:I've got an appointment for this too with the neurologist. Have you had your lumbar puncture yet? I'm getting mine next week. Of all the side effects, this is truly the worst one as it is daily and non-stop. If I can solve this one, I feel like I can live a somewhat normal life.
Well good luck and please let us know if they find anything or even if they dont.
7 hours ago, Colinboko said:9 hours ago, guitarman01 said:I got my thyroid ultrasound from my ent. Just got the results. Normal. I also had a scope. Didn't notice anything significant. Except a dryness and lack of or thick saliva that could exasperate irritation.
I have had homocystine tested numerous times. It's been normal. Glutathione I don't believe is a standard test you can order from a doctor.
Didn't you say your ENT saw inflammation of your cords before though?
that was prob my third scope (just throat) over the years. Yes there has always been some irritation or inflammation, but nothing alarming for them. its been assumed over the years to be a combination of allergies,reflux and dryness. There is inflammation that isnt necessarily visible though as well. For example people with eosinophilic esophagitis (which ive been diagnosed with on two different occasions now) can have severe inflammation and symptoms but a esophagus that appears normal when looked at through a camera. So I guess a visual inspection alone does not rule certain things out.
If you want to try steroids you could pick up some otc flonase and either spray it in your nose and see if it helps, or you can spray it in your throat and swallow it. You could also spray it in your nose and sniff hard enough that some still goes down the back of your throat. Swallowed flonase is actually the treatment for eosinophilic esophagitis, which is basically inflammation. So you could try this first and it would be safer because its not systemic, and see if it has any positive effect for you. This would deal with the sinuses, eyes, ears,throat and possibly some of the gi tract.
7 hours ago, mikez said:IVe got the increased pressure feeling as well... I've had an MRI which came back normal, but that doesn't measure pressure. I've never had a lumbar puncture, but my neurologist doesn't think I need one as she did the whole symptom and eye check. From memory, 'idiopathic intracranial hypertension' was a possible side effect of tane, but then again, what wasn't?
Get a QEEG. I had awkward brain wave readings on that, including off wavelengths dealing with attention, as well as emotion.
26 minutes ago, guitarman01 said:yea basically I think of high blood pressure in the head. Some kind of vascular constriction.
Im getting my carotid arteries ultrasound tomorrow to see if there is anything getting pinched in the neck that could be constricting blood flow.
I sure hope not because if advanced, thats a very serious thing.
Well good luck and please let us know if they find anything or even if they dont.
that was prob my third scope (just throat) over the years. Yes there has always been some irritation or inflammation, but nothing alarming for them. its been assumed over the years to be a combination of allergies,reflux and dryness. There is inflammation that isnt necessarily visible though as well. For example people with eosinophilic esophagitis (which ive been diagnosed with on two different occasions now) can have severe inflammation and symptoms but a esophagus that appears normal when looked at through a camera. So I guess a visual inspection alone does not rule certain things out.If you want to try steroids you could pick up some otc flonase and either spray it in your nose and see if it helps, or you can spray it in your throat and swallow it. You could also spray it in your nose and sniff hard enough that some still goes down the back of your throat. Swallowed flonase is actually the treatment for eosinophilic esophagitis, which is basically inflammation. So you could try this first and it would be safer because its not systemic, and see if it has any positive effect for you. This would deal with the sinuses, eyes, ears,throat and possibly some of the gi tract.
I have tried an allergy spray but didn't really notice any sort of effect. Maybe? But it was just super minute. Probably not even close to the strength of prednisone.
17 minutes ago, Colinboko said:I have tried an allergy spray but didn't really notice any sort of effect. Maybe? But it was just super minute. Probably not even close to the strength of prednisone.
Well the swallowed spray usually comes from a prescription asthma inhaler and the dosage is much higher. around 220mcg twice daily,(or more) compared to 50mcg for a nose spray. So i guess that would be 4 sprays right down the throat, twice daily at minimum.
looking at another study the dosage they were using to treat esophagus inflammation was between 880 to 1760mcg per day in adults.
I have no interest in trying systemic steroids atm until I get some further answers on some of these tests.
Good luck with the ultrasound. Has anyone here had a lumbar puncture here yet? I have another appt Jul 18, ill ask fo more tests.
Interestingly, a few years ago, one of the only medications to absolve my headache and fix my sleep, was Topamax. One of its indicated uses is actually intracranial hypertension. It also increased my libido considerably. I thought I had hit the jack pot. I stopped due to the fact that it lowered my appetite too much. This might not bother some. Just throwing this out there.
Just added another piece of the post accutane side effects puzzle for myself: choline.
I recently realized I had a lot of symptoms in common with too much Acetylcholine in the brain. I started taking steps to avoid excessive dietary intake of choline and using Magnesium which I believe inhibits it. Not only did I start to feel better mentally but something unexpected happened: some of my physical sides from Accutane were reduced. Most notably my chronic folliculitis which I've had for 15 years is like 95% gone. My scalp feels so calm!
Choline affecting my Accutane-induced folliculitis came as a big surprise and it got me thinking about other things which had affected my folliculitis in the past. I had recently stopped eating nightshades because it became clear they aggravated the folliculitis a lot and I thought it was because nightshades are poisonous and were damaging my intestinal wall. But then I read that nightshades are cholinesterase inhibitors, meaning they'll increase the amount of Acetylcholine in the body. I also recall that the Tetracycline family of antibiotics are amazing at killing off my folliculitis and I believe they are Acetylcholine antagonists. Lastly, and I mentioned this a little while ago, Betaine HCL was hands down the worst supplement I've ever taken. It made my folliculitis insane. I've thought for years this was because it increased my stomach acid and may have burned my intestinal lining or because I killed some bacteria and endotoxin release was hurting me, but now I think it's doing this through some other mechanism.
So basically what I know so far is Choline and Betaine are terrible for me post Accutane. I'm only just starting to read about Methylation and I feel like the answers may lie down that road. I just recently realized I have a lot of symptoms of an undermethylator. But I don't know why choline and betaine would cause me such trouble. Need to do a lot of research...
3 minutes ago, Recreant said:Just added another piece of the post accutane side effects puzzle for myself: choline.
I recently realized I had a lot of symptoms in common with too much Acetylcholine in the brain. I started taking steps to avoid excessive dietary intake of choline and using Magnesium which I believe inhibits it. Not only did I start to feel better mentally but something unexpected happened: some of my physical sides from Accutane were reduced. Most notably my chronic folliculitis which I've had for 15 years is like 95% gone. My scalp feels so calm!
Choline affecting my Accutane-induced folliculitis came as a big surprise and it got me thinking about other things which had affected my folliculitis in the past. I had recently stopped eating nightshades because it became clear they aggravated the folliculitis a lot and I thought it was because nightshades are poisonous and were damaging my intestinal wall. But then I read that nightshades are cholinesterase inhibitors, meaning they'll increase the amount of Acetylcholine in the body. I also recall that the Tetracycline family of antibiotics are amazing at killing off my folliculitis and I believe they are Acetylcholine antagonists. Lastly, and I mentioned this a little while ago, Betaine HCL was hands down the worst supplement I've ever taken. It made my folliculitis insane. I've thought for years this was because it increased my stomach acid and may have burned my intestinal lining or because I killed some bacteria and endotoxin release was hurting me, but now I think it's doing this through some other mechanism.
So basically what I know so far is Choline and Betaine are terrible for me post Accutane. I'm only just starting to read about Methylation and I feel like the answers may lie down that road. I just recently realized I have a lot of symptoms of an undermethylator. But I don't know why choline and betaine would cause me such trouble. Need to do a lot of research...
Great news! Very happy for you!!!
4 hours ago, mikez said:Good luck with the ultrasound. Has anyone here had a lumbar puncture here yet? I have another appt Jul 18, ill ask fo more tests.
Interestingly, a few years ago, one of the only medications to absolve my headache and fix my sleep, was Topamax. One of its indicated uses is actually intracranial hypertension. It also increased my libido considerably. I thought I had hit the jack pot. I stopped due to the fact that it lowered my appetite too much. This might not bother some. Just throwing this out there.
Topamax is for epilepsy correct??
It's for treating seizures, how on earth did you get this may I ask?
On 6/30/2017 at 5:36 AM, Recreant said:Just added another piece of the post accutane side effects puzzle for myself: choline.
Try to push to get this test if you live in the states. Even if you dont look into testing for ganglionic acetylcholine receptor antibody. primary care,neurologist, rhumatologist and gastroenterologist could order this test.
Test ID: DYS1
Autoimmune Dysautonomia Evaluation, Serum
[Edited link out]
This is the main antibody you are looking at
Ganglionic Acetylcholine Receptor Autoantibody
[Edited link out]
Over 60% of patients will improve with immunotherapy particularly if treated early.
Cancer is detected in 30% of seropositive patients.
Cancer is detected in 30% of seropositive patients.
Cancer is detected in 30% of seropositive patients.
Not trying to scare people but this needs to be at least mentionedas a what if scenario. Babis had this test in what 2014? has anyone even tried to repeat this test that he tested positive for? Now I tested positive for it? I would have been all over this years ago had i known.
The what if is what if this is allowed to progress unchecked and unknown? could this promote cancer. maybe not today, maybe not tomorrow, but years down the line.
Get a copy or record of proof of having taken accutane as well, before its too late.
If I was only a few years removed from accutane, and I could prove accutane caused me to develop this antibody(which we can prove that in numbers) id be talking to some chicago lawyers right now. Unfortunately its not going to be that easy for me, but it might be for some of you.
On 6/30/2017 at 7:46 AM, guitarman01 said:Try to push to get this test if you live in the states. Even if you dont look into testing for ganglionic acetylcholine receptor antibody. primary care,neurologist, rhumatologist and gastroenterologist could order this test.
Test ID: DYS1
Autoimmune Dysautonomia Evaluation, Serum[Edited link out]
This is the main antibody you are looking atGanglionic Acetylcholine Receptor Autoantibody
[Edited link out]
Over 60% of patients will improve with immunotherapy particularly if treated early.Cancer is detected in 30% of seropositive patients.
Cancer is detected in 30% of seropositive patients.
Cancer is detected in 30% of seropositive patients.Not trying to scare people but this needs to be at least mentioned as a what if scenario. Babis had this test in what 2014? has anyone even tried to repeat this test that he tested positive for? Now I tested positive for it? I would have been all over this years ago had i known.
The what if is what if this is allowed to progress unchecked and unknown? could this promote cancer. maybe not today, maybe not tomorrow, but years down the line.
Get a copy or record of proof of having taken accutane as well, before its too late.
If I was only a few years removed from accutane, and I could prove accutane caused me to develop this antibody(which we can prove that in numbers) id be talking to some chicago lawyers right now. Unfortunately its not going to be that easy for me, but it might be for some of you.
Your research rocks man. 100% invested that's for sure. But if this is the case, immunotherapy then?
Idk if I'm even looking at the correct thing but I did find this
7 minutes ago, guitarman01 said:yea thats the same antibody and yes it different then the muscle achr antibody.
Ganglionic Neuronalbeing the key term.
I'll certainly try to get this tested soon. I get so nervous asking my doctor for crazy shit like this because I look like a perfectly healthy 21 year old, even though I'm dying on the inside from all these symptoms. But at the end of the day like my mom always says... they're YOUR doctor. They should never laugh at you for wanting a certain test done.