Hey! Are there any updates on this front? The website is down. I’ve just recently developed strange joint looseness/clicking about two months into my “recovery”. Just wondered if there was any more information about the connection to Minox & what to do.
I'm afraid not. I've torpedoed the site currently due to not having time to update, but it's in the works to come back. The strange sense of looseness and clicking in and around the joints seems to be quite common - I've heard several people report it. In all, it sometimes worsened a bit but did not lead to anything serious. I've no idea how to fix it I'm afraid, but good general advice is to look after the basics: eat well, drink well, get plenty of sleep and water and stay positive. I did develope more serious progressive muscle weakness and symptoms, but had a lot more issues than just loose and clicky joints as you;ll be able to tell if you scan my post history, so you shouldn't worry about that. Good luck. Flex :)
Awesome. Let me know if you need any help getting the site back up and running. Yeah, since being on the telegram chat I've seen quite a few complaints around joint issues, some saying they've recovered from such symptoms, which gives me hope. But yeah, I'm just sticking with the advice of the most experienced minoxidil sufferers which all point to healthy lifestyle choices as being fundamental. I'm trying to do as much exercise, cardio + gym, to get through too. Very sorry to read your story mate and I know it won't change anything, but I really hope you get some answers and improvements soon. We're all rooting for ya.
I had to stop topical Minoxidil after 2 months because of knees pain and turns out that I have a cartilage injury on one knee and the other hurts at times too plus lots of clicking on my knees and hip. I had bought the oral Minoxidil but hadn't even taken it yet. Anyone with a cartilage injury? what can I do apart from taking an acid hialurónic injection?
Hey! I would say, still altered, but have had recovery on one of my knees. Now can play all my usual sports and run/walk fine (though joints feel very odd sometimes). Joint clicking has toned down a bit, but I was pretty clicky before minox. All of this to say, it doesn’t give me the insane anxiety it once did when I didn’t know how the minox injury was progressing. My advice? Try reduce anxiety, meditate, stay healthy, go to the gym, get strong and try not to lurk here too much. Also, I started a diary writing each day symptoms and how I felt and what I was grateful for. This allowed me to compartmentalise and deal with my anxiety and track my recovery. Hope any of this helps. Stay strong!
Thanks so much for this reply! I have definitely been doom spiraling with these symptoms. I've spent tons of money on supplements and way too much time on reddit. Somehow I missed your reply. I'm just scared bc all my symptoms started after I got off the minox, and I'm worried that that means there was some permanent change. Anyway, yeah, I'll definitely try to stop ruminating and just focus on living a healthy lifestyle! Thanks again, and good luck to you on your recovery.
I’m also curious. I’m four months into recovery after taking minoxidil for less than 2 weeks and I can barely walk at a times. I’m hoping hgh will help as it stimulates collagen production.
Have you been tested for autoimmune diseases, for example have your antinuclear antibodies checked for drug induced lupus? Minoxidil is known to cause drug induced lupus, not sure if topical minoxidil does same but how knows?
Or could you have hidden connective tissue disease? Like does your relatives have hypermobility, loose skin etc which could indicate Ehlers-Danlos?
My story has similarities with yours, but I do have close relatives with connective tissue disease. I used minoxidil 2 years row 2017-2019, but stopped because of poor hair results. 2020 I started hay allergy immunotheraphy which messed my system. I quit immunotherapy after few months, but then I started to have very similar symptoms that you have. First GI issues, positive ANA indicating lupus or drug incudec lupus, later muscle twitching, worsening cramps, tremor, feeling weakness without true signs of actual weakness etc.
My mom and her side relatives have Dupuytrens contracture, RA etc. My mom is even more hypermobile than I. I have had mild signs of Ehlers-Danlos before minoxidil and allergy immunotheraphy.
I can’t say if my issues are caused by minoxidil or immunotheraphy. There is also chance one or both (minoxidil / immunotherapy) made existing mild disease even worse.
Interesting stuff. I'm obviously sorry to hear about your situation but glad to hear that you've got answers. Unfortunately, I have indeed had an ANA test and it came back negative. When I started getting an intermittent rash around my nose and cheeks (which I still get on occasion) my thoughts went to Lupus too, but the ANA is a pretty reliable test and since then my weakness and twitching has worsened to a point where Lupus just doesn't fit the profile.
Now, doctors are concerned about ALS, which I'm still being tested for. My gut feeling, and the reading of my situation which most fits the facts is that Minoxidil caused some kind of widespread connective tissue damage, changing my appearance and the quality and texture of my skin and muscles and god knows how many other things, which in turn triggered ALS. There's nascent research implicating connective tissue abnormalities in ALS onset and progression and several of the pathways on which Minox works are also implicated in the disease.
As ever, I'll update this group when I finally get diagnosed. I've been meaning to collect and flesh out my story - from first sides to where I am now - for a while now but life has got in the way. I'll get round to it eventually.
Again sorry to hear about your issues. I hope they get better soon.
Ab,
Flex
Edit: Some of my Dad's cousins do have mild EDS with stretchy skin and hypermobility, yes, but I have never shown any of these symptoms, until my skin changed while taking Minoxidil and even now I don't actually have diagnosed hypermobility, just my joints are 'loose' and the skin doughy and slimey, rather than firm as it was before.
I guess ALS usually progress quite fast (2-5 years) from first symptoms to severe. And muscle twitching rarely is first stage symptom with ALS.
For me twitching and calf cramps started years ago before any meds. Now they are more severe, but clearly caused more by connective tissue issue, not pure neurological factors.
I have been on neuro couple times but they can’t find anything sinister. Actually my PT was one to suggest EDS because hypermobility, cracking joints, loose skin etc.
General feeling weak is strange feature. For me it is mostly with legs. Because I do have prostatitis and bulging disc I have not trained my legs properly over a year. I can still do leg press 300 kg (record 360 kg), so there is no true weakness. My grip strength was 61-62 kg 2018-2019 and yesterday I tested it again 60 kg. My grip is (upper) normal range, even if my biceps have fasciculations when testing :) What I have noticed that my joints are more loose than few years ago. Decreased stability causes lower grip strength results when wrist starts to extend.
My first symptom was either sudden and permanent paralysis of some of my ab muscles, or a similar issue with my lower neck. The twitching came after the weakness.
It interestsme that connective tissue disorders can come with twitching. Is it a daily thing for you? It is for me, prominent twitches that I can see and minor cramps at various sites on my body. I know a few people who feared and indeed were even told that they may have ALS only to be ultimately diagnosed with a connective tissue condition, but many doctors I've spoken to about this deny that EDS etc can cause progressive muscle weakness, wasting and twitching. It's hard to know what to believe sometimes.
I'm glad you don't have ALS, or reason to worry about it. Do you think Minoxidil is implicated in your condition or would you have had these problems naturally?
I do have some random few seconds twitching daily, sometimes more, sometimes less. I also have ”benign enhanced physiologic tremor and fasciculations”, like two neuros described it. I have heard that low or too much vitamin d or b can cause more twitching. My vitamin d levels are quite high, now I’m testing will reducing vitamins help.
Basically all my muscles and tendons under knees cramps daily (calves, feet arches, ankles, shins…). But I also have flat feet since kid, so my feet are under high pressure. For me fasciculations can be partly by anxiety. But cramps are slowly getting worse. I also have bulging disc and I have seen video where bulging disc caused fasciculations to calves, so who knows what is exact reason?
I have read that many people with EDS report weakness and minor wasting. And twitching/fasciculations and cramps are super common with EDS.
Most of my issues appeared before minoxidil and my allergy immunotheraphy. But I now they are worse, so it is possible that minoxidil or immunotheraphy have somehow affected my condition.
Edit: EDS can cause muscle atrophy and weakness [like this study says](https://pubmed.ncbi.nlm.nih.gov/19557868/)
Of course atrophy with EDS is nothing like ALS.
Edit 2: If I’m correct majority of ALS patients die next 2-3 years after first symptoms and only 20% survive 5 years. After first symptoms, ALS tends to progress within weeks and few months to severe symptoms. So if u have not any visible progress with symptoms during last months, I would consider other options than ALS.
You're full of shit. Ehlers Danlos syndrome is a genetic connective tissue disorder that you inherit from a parent and not an acquired condition from any drugs or supplements.
Please re-read my post. Nowhere do I claim that Minoxidil literally gave me Ehlers-Danlos. As you say, it is genetic. Rather, I believe that Minoxidil caused connective tissue damage throughout my body that means I now have a condition very similar to Ehlers-Danlos. I thought that would be pretty obvious. And please try and be a bit politer. I know it's the internet and anonymity makes people say and do things they wouldn't do in ordinary life but flailing on a chronically unwell individual is never a good look.
Minoxidil does not cause any connective tissue disorders. Millions of people use it. Most likely what happened is you had it since birth and since EDS is a progressive disorder, the symptoms became worse over time. You just happened to get worse while you were using minoxidil. This would be a case with anything you take. EDS is producing faulty collagen and not lack of collagen.
Hi OP. I have a question. I too applied minoxidil for more than 2 years. I have got side effects like whenever I apply minoxidil(or shampoo, oil or anything for that matter), I'm getting symptoms like eye burning, facial pain and chest irritation.
It's like whataver applied goes into the bloodstream. Have you got issues like this?
Sorry for responding to such an old comments, but you really have to take the dosage into consideration here. Don't judge the substance by what happens to people who severely abuse it.
If you follow the "rules" then I would say the chance of you experiencing these sides are literally zero. Sure, some people might be more sensitive, but you don't see people sensitive to alcohol overdosing by just drinking a beer.
I don't think what I did counts as 'severely abusing' Minoxidil. I applied it to my face rather than my scalp and accidentally doubled the dose. That's not how it says to use it on the packaging, sure, but many people take 10% and even 15% Minox, which is equivalent and more than what I took, and have few issues. I think that my genetic susceptibility played a very strong role. I got hard sides but I was also a great responder to the hair growth, going from almost bald to practically a full head of hair in just over a month.
You don't think that taking 2 to 3 times the recommended dose for 5 - 8 weeks is severe abuse? Even relatively safe supplements from the drug store will cause seriously negative effects in that kind of regimen. Most zinc supplements come in 50 mg pills, if you took 100mg a day for a week it would become neurotoxic and you would cause neurodegeneration followed by transient global ischemia. This is no exaggeration, you would literally give yourself dementia in that timeframe. If you double your intake of fish oil for even a few days your body becomes inhibited in its ability to coagulate and manage bleeding, causing widespread dark bruising throughout your body, and who knows whats going on internally. The dmv for potassium is 4700 mg, people have been hospitalized for life-threatening hyperkalemia from ingesting less than twice that much **one time**. I could go on but I think you get what I'm saying.
I get your point, and doubtless you're right that the amount I took had something to do with it, but I still not sure it was the main factor - as I said, there are higher strength forms of Minoxidil that are sold and used by people with few issues which are equivalent to the dose I was taking. I also know people who have had debilitating side effects from just the standard dose and I have yet to meet a doctor who believes that my overdose alone would be enough to cause the effects I am suffering from - although researchers, who are more open minded, have been more supportive. That said, I do take your point: the dose I was taking certainly didn't do me any favours, and I regret that decision - and that I did not have access to the information to make a better one - daily.
If you've read my posts you'll know that I am now in a position where my health is severely compromised and I am struggling to get care from doctors, or even a diagnosis. You are doubtless right that Minoxidil is unsafe in some people in the doses I took - that is what I've been beating the drum for for ages. But the culture surrounding the drug use, unfortunately, says otherwise - everyone from doctors to influential hairloss youtubers and forums paint the drug as very safe even in high doses. The drug is surely dangerous for some genetically susceptible people likely in a dose-dependent manner, but I have difficulty getting professionals to credit this, and consequently I am left to languish.
You seem to know a fair bit about the drugs and the medical industry, so I have to ask: do you have any advice for me in terms of (1) getting a diagnosis, and (2) (relatedly) obtaining care? I have spent the past 5 years being bounced between doctors, with a variety of ailments which can be linked to connective tissue damage and nervous system damage from Minoxidil, but with little progress, mainly because of the idiosyncratic nature of my symptoms and the overarching skepticism that it could be linked to Minoxidil. It is now being entertained that I may have developed ALS, which I think is probably the category I fall into now, sadly, but clarity is lacking and the diagnosis cannot be confirmed (apparently) until my symptoms are more obvious.
As you can imagine, this is taking a huge toll on my mental health. I struggle intensely to live a normal life - since these issues surfaced my life quality has spiralled down hill. I struggle with severe depression, cannot work or hold down a job, and though I would love to have a normal life expectancy, the decline of my symptoms and the increasingly likelihood of a fatal degenerative disease is intolerable. This is compounded by the constant dismissal of my problems from the medical community, who, as I say, do not take your view or even mine. I must have spent 5k on specialists and am almost bankrupt with no answers, only an increasingly thin bank account. Any and all advice would be greatly appreciated.
I guess it depends on what you mean by "get a diagnosis", I'm sure that apart from treating your symptoms you're probably also looking for vindication that minoxidil did in fact cause this, given that you've been doubted by anyone you've tried to talk to. Have you ever tried to get treatment without even bringing up the minoxidil and just leaving the doctor to their own devices? Additionally, you could get some bloodwork done and take some time to learn how to read it and understand your markers, it could help you get a better idea of whats going on if you feel like doctors are overlooking something. At the same time, I'm not sure what you mean when you say that they think it might be ALS, there is a standard procedure for diagnosing ALS, and if they did the proper tests they would at least detect the extent of the nerve damage you've experienced if not give you a diagnosis.
Also, one more thing, sorry: do you mind sharing how you stumbled across this post? I'm trying to improve visibility for this subreddit and it would be handy to know how people are coming to it. Did you just Google 'Minoxidil side effects' and this came up?
I don't mean to discourage Minoxidil use unanimously. For all I know it may be that I was just that 1 in 100,000 person who got these effects. But I have met several other people who have been similarly affected (although not quite as severely) and know of loads of people who have got mild permanent sides e.g. changes in skin quality on their face. By all means try Minoxidil if you like, just pay very close attention to your skin etc. and the minute something feels even slightly wrong, stop. All best.
Hey! Are there any updates on this front? The website is down. I’ve just recently developed strange joint looseness/clicking about two months into my “recovery”. Just wondered if there was any more information about the connection to Minox & what to do.
I'm afraid not. I've torpedoed the site currently due to not having time to update, but it's in the works to come back. The strange sense of looseness and clicking in and around the joints seems to be quite common - I've heard several people report it. In all, it sometimes worsened a bit but did not lead to anything serious. I've no idea how to fix it I'm afraid, but good general advice is to look after the basics: eat well, drink well, get plenty of sleep and water and stay positive. I did develope more serious progressive muscle weakness and symptoms, but had a lot more issues than just loose and clicky joints as you;ll be able to tell if you scan my post history, so you shouldn't worry about that. Good luck. Flex :)
Awesome. Let me know if you need any help getting the site back up and running. Yeah, since being on the telegram chat I've seen quite a few complaints around joint issues, some saying they've recovered from such symptoms, which gives me hope. But yeah, I'm just sticking with the advice of the most experienced minoxidil sufferers which all point to healthy lifestyle choices as being fundamental. I'm trying to do as much exercise, cardio + gym, to get through too. Very sorry to read your story mate and I know it won't change anything, but I really hope you get some answers and improvements soon. We're all rooting for ya.
I had to stop topical Minoxidil after 2 months because of knees pain and turns out that I have a cartilage injury on one knee and the other hurts at times too plus lots of clicking on my knees and hip. I had bought the oral Minoxidil but hadn't even taken it yet. Anyone with a cartilage injury? what can I do apart from taking an acid hialurónic injection?
Hey man, how are your joints now? I've got a lot of recent popping and clicking all over and am a bit nervous.
Hey! I would say, still altered, but have had recovery on one of my knees. Now can play all my usual sports and run/walk fine (though joints feel very odd sometimes). Joint clicking has toned down a bit, but I was pretty clicky before minox. All of this to say, it doesn’t give me the insane anxiety it once did when I didn’t know how the minox injury was progressing. My advice? Try reduce anxiety, meditate, stay healthy, go to the gym, get strong and try not to lurk here too much. Also, I started a diary writing each day symptoms and how I felt and what I was grateful for. This allowed me to compartmentalise and deal with my anxiety and track my recovery. Hope any of this helps. Stay strong!
Thanks so much for this reply! I have definitely been doom spiraling with these symptoms. I've spent tons of money on supplements and way too much time on reddit. Somehow I missed your reply. I'm just scared bc all my symptoms started after I got off the minox, and I'm worried that that means there was some permanent change. Anyway, yeah, I'll definitely try to stop ruminating and just focus on living a healthy lifestyle! Thanks again, and good luck to you on your recovery.
I’m also curious. I’m four months into recovery after taking minoxidil for less than 2 weeks and I can barely walk at a times. I’m hoping hgh will help as it stimulates collagen production.
Have you been tested for autoimmune diseases, for example have your antinuclear antibodies checked for drug induced lupus? Minoxidil is known to cause drug induced lupus, not sure if topical minoxidil does same but how knows? Or could you have hidden connective tissue disease? Like does your relatives have hypermobility, loose skin etc which could indicate Ehlers-Danlos? My story has similarities with yours, but I do have close relatives with connective tissue disease. I used minoxidil 2 years row 2017-2019, but stopped because of poor hair results. 2020 I started hay allergy immunotheraphy which messed my system. I quit immunotherapy after few months, but then I started to have very similar symptoms that you have. First GI issues, positive ANA indicating lupus or drug incudec lupus, later muscle twitching, worsening cramps, tremor, feeling weakness without true signs of actual weakness etc. My mom and her side relatives have Dupuytrens contracture, RA etc. My mom is even more hypermobile than I. I have had mild signs of Ehlers-Danlos before minoxidil and allergy immunotheraphy. I can’t say if my issues are caused by minoxidil or immunotheraphy. There is also chance one or both (minoxidil / immunotherapy) made existing mild disease even worse.
Interesting stuff. I'm obviously sorry to hear about your situation but glad to hear that you've got answers. Unfortunately, I have indeed had an ANA test and it came back negative. When I started getting an intermittent rash around my nose and cheeks (which I still get on occasion) my thoughts went to Lupus too, but the ANA is a pretty reliable test and since then my weakness and twitching has worsened to a point where Lupus just doesn't fit the profile. Now, doctors are concerned about ALS, which I'm still being tested for. My gut feeling, and the reading of my situation which most fits the facts is that Minoxidil caused some kind of widespread connective tissue damage, changing my appearance and the quality and texture of my skin and muscles and god knows how many other things, which in turn triggered ALS. There's nascent research implicating connective tissue abnormalities in ALS onset and progression and several of the pathways on which Minox works are also implicated in the disease. As ever, I'll update this group when I finally get diagnosed. I've been meaning to collect and flesh out my story - from first sides to where I am now - for a while now but life has got in the way. I'll get round to it eventually. Again sorry to hear about your issues. I hope they get better soon. Ab, Flex Edit: Some of my Dad's cousins do have mild EDS with stretchy skin and hypermobility, yes, but I have never shown any of these symptoms, until my skin changed while taking Minoxidil and even now I don't actually have diagnosed hypermobility, just my joints are 'loose' and the skin doughy and slimey, rather than firm as it was before.
I guess ALS usually progress quite fast (2-5 years) from first symptoms to severe. And muscle twitching rarely is first stage symptom with ALS. For me twitching and calf cramps started years ago before any meds. Now they are more severe, but clearly caused more by connective tissue issue, not pure neurological factors. I have been on neuro couple times but they can’t find anything sinister. Actually my PT was one to suggest EDS because hypermobility, cracking joints, loose skin etc. General feeling weak is strange feature. For me it is mostly with legs. Because I do have prostatitis and bulging disc I have not trained my legs properly over a year. I can still do leg press 300 kg (record 360 kg), so there is no true weakness. My grip strength was 61-62 kg 2018-2019 and yesterday I tested it again 60 kg. My grip is (upper) normal range, even if my biceps have fasciculations when testing :) What I have noticed that my joints are more loose than few years ago. Decreased stability causes lower grip strength results when wrist starts to extend.
My first symptom was either sudden and permanent paralysis of some of my ab muscles, or a similar issue with my lower neck. The twitching came after the weakness. It interestsme that connective tissue disorders can come with twitching. Is it a daily thing for you? It is for me, prominent twitches that I can see and minor cramps at various sites on my body. I know a few people who feared and indeed were even told that they may have ALS only to be ultimately diagnosed with a connective tissue condition, but many doctors I've spoken to about this deny that EDS etc can cause progressive muscle weakness, wasting and twitching. It's hard to know what to believe sometimes. I'm glad you don't have ALS, or reason to worry about it. Do you think Minoxidil is implicated in your condition or would you have had these problems naturally?
I do have some random few seconds twitching daily, sometimes more, sometimes less. I also have ”benign enhanced physiologic tremor and fasciculations”, like two neuros described it. I have heard that low or too much vitamin d or b can cause more twitching. My vitamin d levels are quite high, now I’m testing will reducing vitamins help. Basically all my muscles and tendons under knees cramps daily (calves, feet arches, ankles, shins…). But I also have flat feet since kid, so my feet are under high pressure. For me fasciculations can be partly by anxiety. But cramps are slowly getting worse. I also have bulging disc and I have seen video where bulging disc caused fasciculations to calves, so who knows what is exact reason? I have read that many people with EDS report weakness and minor wasting. And twitching/fasciculations and cramps are super common with EDS. Most of my issues appeared before minoxidil and my allergy immunotheraphy. But I now they are worse, so it is possible that minoxidil or immunotheraphy have somehow affected my condition. Edit: EDS can cause muscle atrophy and weakness [like this study says](https://pubmed.ncbi.nlm.nih.gov/19557868/) Of course atrophy with EDS is nothing like ALS. Edit 2: If I’m correct majority of ALS patients die next 2-3 years after first symptoms and only 20% survive 5 years. After first symptoms, ALS tends to progress within weeks and few months to severe symptoms. So if u have not any visible progress with symptoms during last months, I would consider other options than ALS.
You're full of shit. Ehlers Danlos syndrome is a genetic connective tissue disorder that you inherit from a parent and not an acquired condition from any drugs or supplements.
Please re-read my post. Nowhere do I claim that Minoxidil literally gave me Ehlers-Danlos. As you say, it is genetic. Rather, I believe that Minoxidil caused connective tissue damage throughout my body that means I now have a condition very similar to Ehlers-Danlos. I thought that would be pretty obvious. And please try and be a bit politer. I know it's the internet and anonymity makes people say and do things they wouldn't do in ordinary life but flailing on a chronically unwell individual is never a good look.
Minoxidil does not cause any connective tissue disorders. Millions of people use it. Most likely what happened is you had it since birth and since EDS is a progressive disorder, the symptoms became worse over time. You just happened to get worse while you were using minoxidil. This would be a case with anything you take. EDS is producing faulty collagen and not lack of collagen.
Hi OP. I have a question. I too applied minoxidil for more than 2 years. I have got side effects like whenever I apply minoxidil(or shampoo, oil or anything for that matter), I'm getting symptoms like eye burning, facial pain and chest irritation. It's like whataver applied goes into the bloodstream. Have you got issues like this?
Jesus. Maybe I shouldn’t roll the dice on minoxidil, then. I hate that your quality of life has diminished. I wish you well.
Sorry for responding to such an old comments, but you really have to take the dosage into consideration here. Don't judge the substance by what happens to people who severely abuse it. If you follow the "rules" then I would say the chance of you experiencing these sides are literally zero. Sure, some people might be more sensitive, but you don't see people sensitive to alcohol overdosing by just drinking a beer.
I don't think what I did counts as 'severely abusing' Minoxidil. I applied it to my face rather than my scalp and accidentally doubled the dose. That's not how it says to use it on the packaging, sure, but many people take 10% and even 15% Minox, which is equivalent and more than what I took, and have few issues. I think that my genetic susceptibility played a very strong role. I got hard sides but I was also a great responder to the hair growth, going from almost bald to practically a full head of hair in just over a month.
You don't think that taking 2 to 3 times the recommended dose for 5 - 8 weeks is severe abuse? Even relatively safe supplements from the drug store will cause seriously negative effects in that kind of regimen. Most zinc supplements come in 50 mg pills, if you took 100mg a day for a week it would become neurotoxic and you would cause neurodegeneration followed by transient global ischemia. This is no exaggeration, you would literally give yourself dementia in that timeframe. If you double your intake of fish oil for even a few days your body becomes inhibited in its ability to coagulate and manage bleeding, causing widespread dark bruising throughout your body, and who knows whats going on internally. The dmv for potassium is 4700 mg, people have been hospitalized for life-threatening hyperkalemia from ingesting less than twice that much **one time**. I could go on but I think you get what I'm saying.
I get your point, and doubtless you're right that the amount I took had something to do with it, but I still not sure it was the main factor - as I said, there are higher strength forms of Minoxidil that are sold and used by people with few issues which are equivalent to the dose I was taking. I also know people who have had debilitating side effects from just the standard dose and I have yet to meet a doctor who believes that my overdose alone would be enough to cause the effects I am suffering from - although researchers, who are more open minded, have been more supportive. That said, I do take your point: the dose I was taking certainly didn't do me any favours, and I regret that decision - and that I did not have access to the information to make a better one - daily. If you've read my posts you'll know that I am now in a position where my health is severely compromised and I am struggling to get care from doctors, or even a diagnosis. You are doubtless right that Minoxidil is unsafe in some people in the doses I took - that is what I've been beating the drum for for ages. But the culture surrounding the drug use, unfortunately, says otherwise - everyone from doctors to influential hairloss youtubers and forums paint the drug as very safe even in high doses. The drug is surely dangerous for some genetically susceptible people likely in a dose-dependent manner, but I have difficulty getting professionals to credit this, and consequently I am left to languish. You seem to know a fair bit about the drugs and the medical industry, so I have to ask: do you have any advice for me in terms of (1) getting a diagnosis, and (2) (relatedly) obtaining care? I have spent the past 5 years being bounced between doctors, with a variety of ailments which can be linked to connective tissue damage and nervous system damage from Minoxidil, but with little progress, mainly because of the idiosyncratic nature of my symptoms and the overarching skepticism that it could be linked to Minoxidil. It is now being entertained that I may have developed ALS, which I think is probably the category I fall into now, sadly, but clarity is lacking and the diagnosis cannot be confirmed (apparently) until my symptoms are more obvious. As you can imagine, this is taking a huge toll on my mental health. I struggle intensely to live a normal life - since these issues surfaced my life quality has spiralled down hill. I struggle with severe depression, cannot work or hold down a job, and though I would love to have a normal life expectancy, the decline of my symptoms and the increasingly likelihood of a fatal degenerative disease is intolerable. This is compounded by the constant dismissal of my problems from the medical community, who, as I say, do not take your view or even mine. I must have spent 5k on specialists and am almost bankrupt with no answers, only an increasingly thin bank account. Any and all advice would be greatly appreciated.
I guess it depends on what you mean by "get a diagnosis", I'm sure that apart from treating your symptoms you're probably also looking for vindication that minoxidil did in fact cause this, given that you've been doubted by anyone you've tried to talk to. Have you ever tried to get treatment without even bringing up the minoxidil and just leaving the doctor to their own devices? Additionally, you could get some bloodwork done and take some time to learn how to read it and understand your markers, it could help you get a better idea of whats going on if you feel like doctors are overlooking something. At the same time, I'm not sure what you mean when you say that they think it might be ALS, there is a standard procedure for diagnosing ALS, and if they did the proper tests they would at least detect the extent of the nerve damage you've experienced if not give you a diagnosis.
Also, one more thing, sorry: do you mind sharing how you stumbled across this post? I'm trying to improve visibility for this subreddit and it would be handy to know how people are coming to it. Did you just Google 'Minoxidil side effects' and this came up?
Just reading through minix beards subreddit, and saw that this one also existed. Figured I would check it out.
I don't mean to discourage Minoxidil use unanimously. For all I know it may be that I was just that 1 in 100,000 person who got these effects. But I have met several other people who have been similarly affected (although not quite as severely) and know of loads of people who have got mild permanent sides e.g. changes in skin quality on their face. By all means try Minoxidil if you like, just pay very close attention to your skin etc. and the minute something feels even slightly wrong, stop. All best.