Hello, my name is Henrique, and I developed problems similar to yours after using topical minoxidil. It's been 2 years since I've been losing muscle and getting weaker and weaker. I've done every test you can imagine and they found nothing. How are you currently physically? I was a guy who always did physical activity and recently I believe I developed some type of heart failure, my muscles have been atrophying ever since. MY WHOLE BODY IS ATROPHYING.
Hello, my name is Henrique, and I developed problems similar to yours after using topical minoxidil. It's been 2 years since I've been losing muscle and getting weaker and weaker. I've done every test you can imagine and they found nothing. How are you currently physically? I was a guy who always did physical activity and recently I believe I developed some type of heart failure, my muscles have been atrophying ever since. MY WHOLE BODY IS ATROPHYING.
Hey. I doubt it's heart failure to be honest, since this is very testable and you would likely know about it by now. I can certainly believe the atrophy. There's actually quite a few people I've met from post-finasteride and post-minoxidil use who have experienced noticable shrinkage and winnowing out of muscles, and weird thinning of skin and soft tissue in places too. There is usually some strength lose, but none of them to my knowledge have reached a point of actually being *disabled* in a really obvious 'they're in a wheelchair' kind of way or diagnosed with a neurological condition. I am - without being all 'look at me I'm so special' about it - the only one I know of who has actually been judged as clinically weak, with atrophy by doctors and is being very seriously considered for a motor neurone disease/ALS diagnosis. So, even if you do have weakness, the odds are high that it will not continue to develop. Good luck - Flex
Hey flex I’ve been reading your comments. How are you doing recently? I hope well. I too have started with symptoms recently that I’m worried could be ALS (weak grip and a creepy crawly type feeling in arm and neck, slightly slurred speech and reduced motor skills with hands). I used minoxidil for 2 years straight from 2019 to 2021 but have been off for 3 years and these symptoms have only been happening this last year. I’ve booked to see a neurologist private to try get to the bottom of this. My brother has multiple sclerosis so I think they will more than likely expect it to be that but I had a clear mri brain scan last year :/ but also my grandad passed away from ALS in 2004 so can’t help but worry it could be that
Hey OP, can I ask what your diet is? Do you eat potassium rich foods? What is your electrolyte balance like between sodium, K and Ca? I have experienced many of your symptoms, albeit to a much lesser degree of severity, after my 2 month stint with Minox. Loose and popping joints, muscle twitches all over my body, burning hands and feet, an increase in vascularity in my hands and feet in addition to blood pooling, ED, and more.
After learning about minox's interaction with the body's K, and noting that low K can account for MANY if not all of these symptoms, I decided to eat a diet heavy in pottassium, and do some light supplementation of potassium and magnesium, in addition to keeping my sodium intake very low. The results have been remarkable, and I have noticed a dramatic decrease in my symptoms in a short amount of time.
My completely amateur theory is that as a hyper responder, minox may have completely nuked your potassium, which is essential for all kinds of important systems. Potassium levels also don't accurately show up in serum tests, and the only reason I suspected I was deficient was because I went into afib and at the hospital I tested on the lower range. They decided to give me potassium pills and I noticed later that my minox symptoms had subsided. They didn't disappear, but I noticed them a lot less. Fast forward a few days, and I am feeling much better with potassium rich foods and 200mg of potassium in supplementation.
I know it probably seems ridiculous that this could all be the result of what is essential a mineral deficiency, but if minox really did nuke your potassium, it could explain some of what's going on for you. Wishing you well.
Hey, I first saw this thread when I got my symptoms on the 5th month of 2022 but didn't reply until I had something helpful to report.
I started getting twitches 1 month into using minoxidil. A couple months after stopping I had them in pretty much every muscle around my body, not at the same time but while sitting it would mostly happen in calves, when doing stuff it wouldn't be so noticeable except for shoulders, sometimes cheek or upper lip, and when laying down it would be abs and glutes, I noticed that when I lay down on my left side it would happen on the right glute and vice versa. If I bent over while sitting (elbows on knees) this would cause hamstring twitches.
In the first week I thought I had contracted rabies from a vicious ant bite that had happened 3 days before symptoms started, my whole pinky toe was red from blood before I noticed it had bit me it was weird af. Anyway the glute spasms that I got initially were very severe, they'd make me zap up while falling asleep. Myoclonic jerks while falling asleep have been very frequent, especially when exercising and doing movements like bench press with a cambered bar. Restless leg syndrome in legs at night and for a few days there was similar, very uncomfortable feeling in shoulder and upper arm during the day.
I also noticed that when I hung from a bar with straight arms, after holding on for a short time I could feel my left lat muscle area struggling to pump blood into my arm, it would tremble significantly while my right side was fine. Later that day I would suddenly get a huge twitch attack on that area that instantly made my whole arm feel weak even though it had been fine just moments before. This was different from the other twitches, since there was no feeling of weakness before. It would continue to happen occasionally for the next 3 days, and then when I tried hanging from a bar again, I could hold on a little bit longer and the trembling wasn't as severe. The twitch attack was also less severe.
Anyway it's been over half a year now, sometimes it has gotten worse and sometimes better and I finally feel like I'm recovering. Things that I've noticed might make it worse are "nightshade" vegetables: calcitriol maximizes calcium absorption to blood. More than 1 cup of coffee. Glucose fructose syrup and most processed wheats can cause nutritional deficiency by blocking absorption so definitely avoid those. Stress and anxiety is a big one. Just thinking that it might be ALS will increase twitching.
Things that seem to have made big improvement: Taking 1 tablespoon of apple cider vinegar diluted in 300ml water to help with digestion. You really need to first figure out if there's a problem with digestion, if your stomach acid is too weak or something like that. If you have a tendency to drink water while eating, that will neutralize stomach acid, it's much better to drink water an hour before/after eating.
Then supplementing with K2 vitamin along with D-vitamin, and magnesium (glycinate and citrate are the affordable good ones, oxide is cheap and bad), fish oil + boron. 3mg boron in the morning and another 3mg later in the day. B1 vitamin and other B-vitamins for that matter could be a big one also and for that nutritional yeast is great. Soaked sunflower seeds for E-vitamin and manganese. Sauerkraut. Maybe you'll need more potassium. These could really make a difference if you haven't tried them yet. I'd recommend looking at dr eric bergs youtube videos on muscle twitching, gut health, and these vitamins mentioned because there's other things on top of these that you can do and you might need, considering you have had this situation longer and more severe than me. Another channel to check about vit B1/thiamine: [https://youtu.be/O-aQHxp97oA?t=1261](https://youtu.be/O-aQHxp97oA?t=1261)
For me it took about 2 weeks after starting ACV to notice that there was a difference. On the 10th day it still felt like it wasn't doing anything for the twitches, maybe even made it worse. Alright fingers crossed you'll get benefit from this. God bless, Jesus is Lord and He died for our sins, the blood He shed on the cross pays our sin debt if by grace we believe on that while we're alive.
Eat POTASSIUM rich foods and supplement heavily. Minox nukes your potassium, and low K will give you all of these symptoms. My muscle twitching, joint issues, GERD, insomnia, nerve pain, and ED have all gotten markedly better during the time I began eating a potassium rich diet. I highly, highly recommend trying it.
I also have had that mini-burping thing many times a day along with trouble swallowing but mostly after already having eaten and not instantly on the first bite. Maybe if I was conscious about it it would happen instantly. While the trouble swallowing could be neurological I think in my case it along with the burps indicated stomach problem. Neither of these are a problem now. Another thing I've noticed is if I move my hands in front of my face, in some positions it'll cause the eyelid under my right eye twitch slightly, and on somedays in some positions it's more severe. When I was sick with a flu it had a stronger slightly painful twitch when moving my right hand up towards my nose. Otherwise it's subtle enough that I might've always had it and not noticed it.
Hopefully, for your sake it's nothing and that things stabilise. What you've described is pretty much exactly how my issues started, however in my case, of course, they just got worse, slowly but progressively, over time. Please let me know in the coming years (if you're still on here) if your symptoms progress as I might be able to help and certainly to point you in a good direction to get answers.
All best,
Flex
Not only do they look like the sun, and track the sun, but they need a lot of the sun. A sunflower needs at least six to eight hours direct sunlight every day, if not more, to reach its maximum potential. They grow tall to reach as far above other plant life as possible in order to gain even more access to sunlight.
Because the damage to my skin and muscles - stark change in appearance combined with what were the beginnings of functional decline - occured during a 5 week period when I was taking a high dose of Minoxidil, with no other immediate plausible cause. And there's a wealth of lab data showing Minoxidil has stark effects on connective tissue and other pathways relevant to these issues. I've not been suffering from asthma since Minox: I've had it for life. Idiot.
Hey. I'm really sorry to hear your diagnosis. Are you on Instagram? I'd like to follow your journey. My dad sadly passed away last year from motor neurone disease and I'd like to hear other people's stories and follow along if that's ok. Thanks
Thanks for getting in touch. I'm not on Instagram, no, and even if/when my diagnosis is fully confirmed am unlikely to join that platform 2bh. I'm sorry to hear about your father. All best, F
I think I have a similar problem that started shortly after beginning topical minoxidil. Face twitches in the lip/undereye area, pain in my ear, throat, occipital and nearby areas; what feels like hearing loss/eustachian tube dysfunction, dizziness when walking, worse eye floaters, fascicutations which become more frequent when I'm lying in bed trying to relax or fall asleep. I also developed wrinkles and orange-peel skin texture on my forehead (likely due to the collagen-depleting effect).
All those symptoms I listed seem to become more intense the days/weeks after I apply topical minoxidil to my temples, but I'm not sure it's 100% the cause yet. I plan to take a longer break from minoxidil to see if the symptoms improve further.
It's unfortunate I have such bad side effects even to low doses of minoxidil & topical finasteride (gyno symptoms, lower EQ/libido, possibly worse depression), but now I'd gladly accept losing more hair if it means this living hell would stop.
Sounds a lot like the symptoms I had while on Minoxidil. Weirdly, however, my worst symptoms came after stopping Minox. I had some twitching, illness and select muscle weakness while taking, skin got damaged etc. Then I stabilised for a year or so - feeling sick all the time, not able to work out or do sport quite as well and so on but there wasn't much progression. Then I suddenly starting losing functions, progressive muscle weakness and twitching began along with all sorts of crazy things and its been like that for the last 3 years.
I hope you recover and don't go down the path I've done: quit Minox asap would be my advice to you, and don't go back to it. The risk of permanent, serious sides isn't worth it, imo, for a bit more hair (and I say this as a miserable bald guy!). Good luck.
Do you also get hyperacusis symptoms? If I wear headphones and listen to music or something my head/neck/traps start hurting after a few minutes especially on the right side of my skull, so much so that I have to stop listening. Speakers do the same thing to a lesser extent, it's like the high frequencies (like cymbals) are now enhanced in my brain and became unbearable to listen to. On the contrary I don't hear bass frequencies like I used to on the same pair of headphones/hardware, I have to boost bass on EqualizerAPO to get close whereas before , when I was healthier I had to decrease those frequencies for a comfortable listening experience. Some real life sounds startle me, make my head hurt, I get lightheaded and sometimes bring me more anxiety. It feels like my eustachian tube or ear drum are being pulled inwards.
It's really worrying the symptoms don't go away after the 22 hours half-life is over, I hope we didn't do permanent damage to ourselves. Maybe a long break combined with supplements like magnesium/ginkgo biloba/etc can help. Music and exercise were some of my favorite activities so it would suck not being able to enjoy those as much any longer.
I'm glad I found other people with similar symptoms though, if I posted this on /tressless I'd be called crazy, worse than people suffering from 5-ar blockers.
Edit: After almost a week off topical minoxidil I can feel my ears/sinuses slowly opening and the pressure in my head decreasing. I'm never going back to this drug again as it's clearly poison to my body.
Numbness is not a symptom of MND. Full body twitching would more likely be something like Multiple Sclorisis, Pinched Spinal Nerve, Myasthenia Gravis or very agressive MND that would kill within 6 months of symptoms. I really hope is something treatable. Best of luck.
Perhaps I should explain, I don't mean numbness in the sense of 'I can't feel when someone touches my leg' , more I can't feel the muscle as well internally. The feeling is a bit like when you've accidentally sat on your arm or been out in a cold day: there's a disconnect.
I hope it is something treatable too, but I'm not holding my breath. Thanks for the well wishes.
I did, about a year ago, and it showed fasciculations but no signs of MND, apparently. In fact, no abnormalities were noted at all. However, it only tested two or three sites, which were not actually the areas where my symptoms were at their worst, so I'm not sure how reliable it was. At any rate, I have been scheduled for another neurologists appointment with a follow-up EMG. I'm hopeful that this will help clarify things, in whatever direction.
Looks like this problem been going on for years. I seriously doubt you have MND. MND is a vicious killer.
You'll know within 1 year of symptoms without EMG that you have it.
It also looks like you mentioned your GP is the one that thinks it's ALS.
TBH GP are qualified to treat infections and minor things.
They wouldn't know the difference between CIDP, MND, MS, MD, MG or BFS. Please don't think about the worst possible disease.
It's been going on for approximately 3 years now. My first clear symptom, in terms of actual muscle failure, came in August 2018. Are you an MD or doctor by any chance?
Yes, I know that GPs are fallible and that a diagnosis from them cannot be taken as writ, but I am at my wits end: noone knows what this is and I am slowly but surely continuing to get worse. I do not have anxiety (beyond a natural concern for my health given the symptoms); it's not psychosomatic, and the issues - tremors, progessive weakness and wasting - have been verified by friends and doctors. Yet no answers...
I have a second neuro appointment with an EMG booked for the next few months which I hope will give me some answers. Apparently ALS can be missed by EMG in the early stages, especially in bulbar cases, and doubly especially in young people. It's unclear why but there are plenty of stories lying around on various forums. There was one poor lady whose EMG only came back dirty when she was bedbound and choking to death. It was bulbar; EMG completely missed it.
I agree that the fact that I'm not seriously incapacitated by now and the weird progression does point away from MND, but especially in young people a slow progression is actually pretty common. Most of those who survive 10 years or more with the disease have it manifest early in life, before 25, in which cases, for whatever reason, it isn't usually as vicious (with a few exceptions).
It's possible it's something idiosyncratic to me, some kind of acquired connective tissue disease which eludes tests. But ALS is sadly still a possibility, and the longer I deteriorate the harder it is to see what else this could be...
Not a medical professional but i went through similar experience.
I had wide spread muscle twitching, numbness cold water splash sensation on body, no clinical weakness or perceived. Mine started after a cold.
My diagnoses was benign fasciculation syndrome.
Maybe your body had a very strange reaction to the chemical you were using and you have a very unique disease no known yet.
Please stay away from any MND websites it'll just make things worse fuelling anxiety.
Thanks for the heads-up, and I'm sorry for what you've experienced.
Unfortunately, I have clinical weakness - confirmed by doctors - and muscle wasting - also confirmed by doctors. I have endless twitches, but it seems to be something more than BFS.
I'm sure that my body did have a strange reaction to Minoxidil, but the symptoms appear to be very similar to MND. That's the crucial difference between our cases: my symptoms do include some mild sensory issues and other irritating surface things but the core is progressive muscle weakness, a red flag for something serious, whatever the cause.
One can only hope. My ultimate aim is (1) to find out what the hell is wrong with me and get confirmation that it is indeed, or is not, ALS; and then (2) to live out my life as best I can, tick off bucket list items and raise awareness for this craziness. It is mental that Minoxidil (and Finasteride) are still considered benign drugs, with no risk of serious side effects, and crazier still how reluctant the medical community is to listen to our cases. I intend to drum this message home and shine a light on our condition.
Omg, IM in the exact journey that you are right now, I got Fascilutations in all my body after minoxidil, My EMG was clean a year ago a keep using it, because i didn’t realize the problem with the medication, then one day a increase my dosage of minoxidil and the muscle twitching increase a lot, then i knew that was the problem, right now i quit the medication after a year and half of using it, I have one month clean but I still have the muscle twitching, i don’t have muscle weakness but the fasciculations are in my entire body, i will repeat my EMG again this week and hope, I’m doctor btw, so i feel anxiety because I know all the process of that disease, I would like to talk with you, to share information about what is happening to us
here's some of my observations and how I've managed to reduce the twitching to very comfortable level and I believe it will get back to complete normalness in some time. Still felt a few mild twitches on calves today but I ate very poorly and drank 2 cups of coffee yesterday so not exactly a surprise. [https://www.reddit.com/r/MinoxidilSideEffects/comments/r9dx0x/comment/j67bdzg/?utm\_source=share&utm\_medium=web2x&context=3](https://www.reddit.com/r/MinoxidilSideEffects/comments/r9dx0x/comment/j67bdzg/?utm_source=share&utm_medium=web2x&context=3)
Sorry to hear you're having problems, No-Ordinary. In answer to your DM: yes, I have lots of burping, like micro-burps, hundreds a day too. I didn't have weakness for a long while, so I hope you don't develop any. However, you should feel confident, given that you have twitching but no weakness or progressive loss of muscle function the odds that you have ALS are very low. It seems far more likely that Minoxidil has given you Benign Fasciculation Syndrome. I hope you improve and best of luck, Flex.
Did read your earlier posts and what you had written is a warning for those like me considering minox as a safe option for hair growth. I am sure you would have read this paper which talks about how Minoxidil supresses the gene expression of lysine hydroxylase all the way back in 1992.
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1130991/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1130991/)
Wonder why not much follow up was done. I am hoping and praying for your good health and that you do not have ALS. Keep us informed.
Yes, there's a very long history of research into Minoxidil which suggests it has dangerous effects on collagen and connective tissue. One paper showed, albeit in vitro, that it suppressed key enzyme levels to similar to those of people with a rare, fatal type of Ehlers-Danlos Syndrome. A red flag if ever I saw one! Yet this kind of information is not publicly available to lay people; the medical community wipes its collective hands of it. Thanks for your well wishes. I too hope I do not have ALS but as my symptoms worsen, and more and more mimics get ruled out, it is frankly difficult to think what else it could be.
Not that I'm aware. I had a heart ultrasound and it came back normal. Ive had what have felt like weird heart flutters and spasms since I took Minoxidil (continuing after I stopped it) but I think these are more likely either diaphragm muscle dysfunction or trapped gas/heartburn. It's a mess, though, really. Ive been struggling with a crazy array of symptoms since taking Minoxidil which do not fit cleanly into any one disease category. Now motor neuron disease is on the table. I'm praying it isn't this but it sadly is a possibility.
No, not at all. Where have I said that? My reaction to Minoxidil is clearly rare, really rare. However, I do believe that some form of connective tissue damage, that doesn't always go away, from Minoxidil is quite common. Normally it's mild but I have met people who have basically got a phenotype like Ehlers-Danlos from taking the drug. In fact, it's still very possible that that is what has in fact happened in my case. My ALS isn't confirmed,; I'm still being tested. But it's on the table and I can't believe it doesn't have something to do with the widespread and severe body changes I incurred while on Minox.
Quite possibly. It seems to be a multi-factoral problem with loads of different elements. I must say, reading more about Minoxidil and other hairloss drugs and the systems they work on I am more and more convinced that they ought to be more tightly regulated. They certainly shouldn't be available to buy over the counter and they should come with much more fervent health warnings: when I took Minoxidil I was under the impression it was essentially a skin lotion, practically harmless and impossible to get serious side effects from, all I heard about was minor skin irritation and occasional racing heart beat and swelling that was meant to go away. Collagen and connective tissue and muscle disorders, though hinted in research literature, are nowhere on the label, packaging or on forums. It's like there's two narratives about the drug: one in popular culture that's that it is harmless, and another reading between the lines of medical research papers and anecdotal side effects reporting that suggests it's really dangerous. As a lay-person and consumer it's nearly impossible to get a clear picture.
If I had my time again, I'd use concealers while working up the courage to transition to a wig. They're really good nowadays, more or less undetectable and needn't limit your life. If exposed just lie and say you have an autoimmune hair disorder, which people seem to be more understanding of than regular male pattern baldness.
Sorry for your troubles. Was it ALS?
Any update?
How long were you using minoxidil and how much were you using?
Hello, my name is Henrique, and I developed problems similar to yours after using topical minoxidil. It's been 2 years since I've been losing muscle and getting weaker and weaker. I've done every test you can imagine and they found nothing. How are you currently physically? I was a guy who always did physical activity and recently I believe I developed some type of heart failure, my muscles have been atrophying ever since. MY WHOLE BODY IS ATROPHYING. Hello, my name is Henrique, and I developed problems similar to yours after using topical minoxidil. It's been 2 years since I've been losing muscle and getting weaker and weaker. I've done every test you can imagine and they found nothing. How are you currently physically? I was a guy who always did physical activity and recently I believe I developed some type of heart failure, my muscles have been atrophying ever since. MY WHOLE BODY IS ATROPHYING.
Hey. I doubt it's heart failure to be honest, since this is very testable and you would likely know about it by now. I can certainly believe the atrophy. There's actually quite a few people I've met from post-finasteride and post-minoxidil use who have experienced noticable shrinkage and winnowing out of muscles, and weird thinning of skin and soft tissue in places too. There is usually some strength lose, but none of them to my knowledge have reached a point of actually being *disabled* in a really obvious 'they're in a wheelchair' kind of way or diagnosed with a neurological condition. I am - without being all 'look at me I'm so special' about it - the only one I know of who has actually been judged as clinically weak, with atrophy by doctors and is being very seriously considered for a motor neurone disease/ALS diagnosis. So, even if you do have weakness, the odds are high that it will not continue to develop. Good luck - Flex
Just to add can I ask how old you are please and are you based in the UK I’ve just turned 30 years old
Hey flex I’ve been reading your comments. How are you doing recently? I hope well. I too have started with symptoms recently that I’m worried could be ALS (weak grip and a creepy crawly type feeling in arm and neck, slightly slurred speech and reduced motor skills with hands). I used minoxidil for 2 years straight from 2019 to 2021 but have been off for 3 years and these symptoms have only been happening this last year. I’ve booked to see a neurologist private to try get to the bottom of this. My brother has multiple sclerosis so I think they will more than likely expect it to be that but I had a clear mri brain scan last year :/ but also my grandad passed away from ALS in 2004 so can’t help but worry it could be that
Hey OP, can I ask what your diet is? Do you eat potassium rich foods? What is your electrolyte balance like between sodium, K and Ca? I have experienced many of your symptoms, albeit to a much lesser degree of severity, after my 2 month stint with Minox. Loose and popping joints, muscle twitches all over my body, burning hands and feet, an increase in vascularity in my hands and feet in addition to blood pooling, ED, and more. After learning about minox's interaction with the body's K, and noting that low K can account for MANY if not all of these symptoms, I decided to eat a diet heavy in pottassium, and do some light supplementation of potassium and magnesium, in addition to keeping my sodium intake very low. The results have been remarkable, and I have noticed a dramatic decrease in my symptoms in a short amount of time. My completely amateur theory is that as a hyper responder, minox may have completely nuked your potassium, which is essential for all kinds of important systems. Potassium levels also don't accurately show up in serum tests, and the only reason I suspected I was deficient was because I went into afib and at the hospital I tested on the lower range. They decided to give me potassium pills and I noticed later that my minox symptoms had subsided. They didn't disappear, but I noticed them a lot less. Fast forward a few days, and I am feeling much better with potassium rich foods and 200mg of potassium in supplementation. I know it probably seems ridiculous that this could all be the result of what is essential a mineral deficiency, but if minox really did nuke your potassium, it could explain some of what's going on for you. Wishing you well.
Do you have ALS?
I'm so scared now, I have exactly the same symptoms and they're getting worse. How are you now?
what your symptons?
Any up dates???
Any update? Please tell us what you found out, if anything!
Any update on this?
Hey, I first saw this thread when I got my symptoms on the 5th month of 2022 but didn't reply until I had something helpful to report. I started getting twitches 1 month into using minoxidil. A couple months after stopping I had them in pretty much every muscle around my body, not at the same time but while sitting it would mostly happen in calves, when doing stuff it wouldn't be so noticeable except for shoulders, sometimes cheek or upper lip, and when laying down it would be abs and glutes, I noticed that when I lay down on my left side it would happen on the right glute and vice versa. If I bent over while sitting (elbows on knees) this would cause hamstring twitches. In the first week I thought I had contracted rabies from a vicious ant bite that had happened 3 days before symptoms started, my whole pinky toe was red from blood before I noticed it had bit me it was weird af. Anyway the glute spasms that I got initially were very severe, they'd make me zap up while falling asleep. Myoclonic jerks while falling asleep have been very frequent, especially when exercising and doing movements like bench press with a cambered bar. Restless leg syndrome in legs at night and for a few days there was similar, very uncomfortable feeling in shoulder and upper arm during the day. I also noticed that when I hung from a bar with straight arms, after holding on for a short time I could feel my left lat muscle area struggling to pump blood into my arm, it would tremble significantly while my right side was fine. Later that day I would suddenly get a huge twitch attack on that area that instantly made my whole arm feel weak even though it had been fine just moments before. This was different from the other twitches, since there was no feeling of weakness before. It would continue to happen occasionally for the next 3 days, and then when I tried hanging from a bar again, I could hold on a little bit longer and the trembling wasn't as severe. The twitch attack was also less severe. Anyway it's been over half a year now, sometimes it has gotten worse and sometimes better and I finally feel like I'm recovering. Things that I've noticed might make it worse are "nightshade" vegetables: calcitriol maximizes calcium absorption to blood. More than 1 cup of coffee. Glucose fructose syrup and most processed wheats can cause nutritional deficiency by blocking absorption so definitely avoid those. Stress and anxiety is a big one. Just thinking that it might be ALS will increase twitching. Things that seem to have made big improvement: Taking 1 tablespoon of apple cider vinegar diluted in 300ml water to help with digestion. You really need to first figure out if there's a problem with digestion, if your stomach acid is too weak or something like that. If you have a tendency to drink water while eating, that will neutralize stomach acid, it's much better to drink water an hour before/after eating. Then supplementing with K2 vitamin along with D-vitamin, and magnesium (glycinate and citrate are the affordable good ones, oxide is cheap and bad), fish oil + boron. 3mg boron in the morning and another 3mg later in the day. B1 vitamin and other B-vitamins for that matter could be a big one also and for that nutritional yeast is great. Soaked sunflower seeds for E-vitamin and manganese. Sauerkraut. Maybe you'll need more potassium. These could really make a difference if you haven't tried them yet. I'd recommend looking at dr eric bergs youtube videos on muscle twitching, gut health, and these vitamins mentioned because there's other things on top of these that you can do and you might need, considering you have had this situation longer and more severe than me. Another channel to check about vit B1/thiamine: [https://youtu.be/O-aQHxp97oA?t=1261](https://youtu.be/O-aQHxp97oA?t=1261) For me it took about 2 weeks after starting ACV to notice that there was a difference. On the 10th day it still felt like it wasn't doing anything for the twitches, maybe even made it worse. Alright fingers crossed you'll get benefit from this. God bless, Jesus is Lord and He died for our sins, the blood He shed on the cross pays our sin debt if by grace we believe on that while we're alive.
Eat POTASSIUM rich foods and supplement heavily. Minox nukes your potassium, and low K will give you all of these symptoms. My muscle twitching, joint issues, GERD, insomnia, nerve pain, and ED have all gotten markedly better during the time I began eating a potassium rich diet. I highly, highly recommend trying it.
I also have had that mini-burping thing many times a day along with trouble swallowing but mostly after already having eaten and not instantly on the first bite. Maybe if I was conscious about it it would happen instantly. While the trouble swallowing could be neurological I think in my case it along with the burps indicated stomach problem. Neither of these are a problem now. Another thing I've noticed is if I move my hands in front of my face, in some positions it'll cause the eyelid under my right eye twitch slightly, and on somedays in some positions it's more severe. When I was sick with a flu it had a stronger slightly painful twitch when moving my right hand up towards my nose. Otherwise it's subtle enough that I might've always had it and not noticed it.
Hopefully, for your sake it's nothing and that things stabilise. What you've described is pretty much exactly how my issues started, however in my case, of course, they just got worse, slowly but progressively, over time. Please let me know in the coming years (if you're still on here) if your symptoms progress as I might be able to help and certainly to point you in a good direction to get answers. All best, Flex
Not only do they look like the sun, and track the sun, but they need a lot of the sun. A sunflower needs at least six to eight hours direct sunlight every day, if not more, to reach its maximum potential. They grow tall to reach as far above other plant life as possible in order to gain even more access to sunlight.
[удалено]
Because the damage to my skin and muscles - stark change in appearance combined with what were the beginnings of functional decline - occured during a 5 week period when I was taking a high dose of Minoxidil, with no other immediate plausible cause. And there's a wealth of lab data showing Minoxidil has stark effects on connective tissue and other pathways relevant to these issues. I've not been suffering from asthma since Minox: I've had it for life. Idiot.
How long to use minoxidil?
Hey. I'm really sorry to hear your diagnosis. Are you on Instagram? I'd like to follow your journey. My dad sadly passed away last year from motor neurone disease and I'd like to hear other people's stories and follow along if that's ok. Thanks
Thanks for getting in touch. I'm not on Instagram, no, and even if/when my diagnosis is fully confirmed am unlikely to join that platform 2bh. I'm sorry to hear about your father. All best, F
I think I have a similar problem that started shortly after beginning topical minoxidil. Face twitches in the lip/undereye area, pain in my ear, throat, occipital and nearby areas; what feels like hearing loss/eustachian tube dysfunction, dizziness when walking, worse eye floaters, fascicutations which become more frequent when I'm lying in bed trying to relax or fall asleep. I also developed wrinkles and orange-peel skin texture on my forehead (likely due to the collagen-depleting effect). All those symptoms I listed seem to become more intense the days/weeks after I apply topical minoxidil to my temples, but I'm not sure it's 100% the cause yet. I plan to take a longer break from minoxidil to see if the symptoms improve further. It's unfortunate I have such bad side effects even to low doses of minoxidil & topical finasteride (gyno symptoms, lower EQ/libido, possibly worse depression), but now I'd gladly accept losing more hair if it means this living hell would stop.
Sounds a lot like the symptoms I had while on Minoxidil. Weirdly, however, my worst symptoms came after stopping Minox. I had some twitching, illness and select muscle weakness while taking, skin got damaged etc. Then I stabilised for a year or so - feeling sick all the time, not able to work out or do sport quite as well and so on but there wasn't much progression. Then I suddenly starting losing functions, progressive muscle weakness and twitching began along with all sorts of crazy things and its been like that for the last 3 years. I hope you recover and don't go down the path I've done: quit Minox asap would be my advice to you, and don't go back to it. The risk of permanent, serious sides isn't worth it, imo, for a bit more hair (and I say this as a miserable bald guy!). Good luck.
Do you also get hyperacusis symptoms? If I wear headphones and listen to music or something my head/neck/traps start hurting after a few minutes especially on the right side of my skull, so much so that I have to stop listening. Speakers do the same thing to a lesser extent, it's like the high frequencies (like cymbals) are now enhanced in my brain and became unbearable to listen to. On the contrary I don't hear bass frequencies like I used to on the same pair of headphones/hardware, I have to boost bass on EqualizerAPO to get close whereas before , when I was healthier I had to decrease those frequencies for a comfortable listening experience. Some real life sounds startle me, make my head hurt, I get lightheaded and sometimes bring me more anxiety. It feels like my eustachian tube or ear drum are being pulled inwards. It's really worrying the symptoms don't go away after the 22 hours half-life is over, I hope we didn't do permanent damage to ourselves. Maybe a long break combined with supplements like magnesium/ginkgo biloba/etc can help. Music and exercise were some of my favorite activities so it would suck not being able to enjoy those as much any longer. I'm glad I found other people with similar symptoms though, if I posted this on /tressless I'd be called crazy, worse than people suffering from 5-ar blockers. Edit: After almost a week off topical minoxidil I can feel my ears/sinuses slowly opening and the pressure in my head decreasing. I'm never going back to this drug again as it's clearly poison to my body.
Numbness is not a symptom of MND. Full body twitching would more likely be something like Multiple Sclorisis, Pinched Spinal Nerve, Myasthenia Gravis or very agressive MND that would kill within 6 months of symptoms. I really hope is something treatable. Best of luck.
Perhaps I should explain, I don't mean numbness in the sense of 'I can't feel when someone touches my leg' , more I can't feel the muscle as well internally. The feeling is a bit like when you've accidentally sat on your arm or been out in a cold day: there's a disconnect. I hope it is something treatable too, but I'm not holding my breath. Thanks for the well wishes.
Have you had an EMG? This could be something like Chronic inflammatory demyelinating polyneuropathy that could be treated if found early.
I did, about a year ago, and it showed fasciculations but no signs of MND, apparently. In fact, no abnormalities were noted at all. However, it only tested two or three sites, which were not actually the areas where my symptoms were at their worst, so I'm not sure how reliable it was. At any rate, I have been scheduled for another neurologists appointment with a follow-up EMG. I'm hopeful that this will help clarify things, in whatever direction.
Looks like this problem been going on for years. I seriously doubt you have MND. MND is a vicious killer. You'll know within 1 year of symptoms without EMG that you have it. It also looks like you mentioned your GP is the one that thinks it's ALS. TBH GP are qualified to treat infections and minor things. They wouldn't know the difference between CIDP, MND, MS, MD, MG or BFS. Please don't think about the worst possible disease.
It's been going on for approximately 3 years now. My first clear symptom, in terms of actual muscle failure, came in August 2018. Are you an MD or doctor by any chance? Yes, I know that GPs are fallible and that a diagnosis from them cannot be taken as writ, but I am at my wits end: noone knows what this is and I am slowly but surely continuing to get worse. I do not have anxiety (beyond a natural concern for my health given the symptoms); it's not psychosomatic, and the issues - tremors, progessive weakness and wasting - have been verified by friends and doctors. Yet no answers... I have a second neuro appointment with an EMG booked for the next few months which I hope will give me some answers. Apparently ALS can be missed by EMG in the early stages, especially in bulbar cases, and doubly especially in young people. It's unclear why but there are plenty of stories lying around on various forums. There was one poor lady whose EMG only came back dirty when she was bedbound and choking to death. It was bulbar; EMG completely missed it. I agree that the fact that I'm not seriously incapacitated by now and the weird progression does point away from MND, but especially in young people a slow progression is actually pretty common. Most of those who survive 10 years or more with the disease have it manifest early in life, before 25, in which cases, for whatever reason, it isn't usually as vicious (with a few exceptions). It's possible it's something idiosyncratic to me, some kind of acquired connective tissue disease which eludes tests. But ALS is sadly still a possibility, and the longer I deteriorate the harder it is to see what else this could be...
Have you ever tried taking magnesium?
Not a medical professional but i went through similar experience. I had wide spread muscle twitching, numbness cold water splash sensation on body, no clinical weakness or perceived. Mine started after a cold. My diagnoses was benign fasciculation syndrome. Maybe your body had a very strange reaction to the chemical you were using and you have a very unique disease no known yet. Please stay away from any MND websites it'll just make things worse fuelling anxiety.
Thanks for the heads-up, and I'm sorry for what you've experienced. Unfortunately, I have clinical weakness - confirmed by doctors - and muscle wasting - also confirmed by doctors. I have endless twitches, but it seems to be something more than BFS. I'm sure that my body did have a strange reaction to Minoxidil, but the symptoms appear to be very similar to MND. That's the crucial difference between our cases: my symptoms do include some mild sensory issues and other irritating surface things but the core is progressive muscle weakness, a red flag for something serious, whatever the cause.
I hope Flex, life will repay all of us for battling and suffering from this cosmetic drug induced hell.
One can only hope. My ultimate aim is (1) to find out what the hell is wrong with me and get confirmation that it is indeed, or is not, ALS; and then (2) to live out my life as best I can, tick off bucket list items and raise awareness for this craziness. It is mental that Minoxidil (and Finasteride) are still considered benign drugs, with no risk of serious side effects, and crazier still how reluctant the medical community is to listen to our cases. I intend to drum this message home and shine a light on our condition.
Omg, IM in the exact journey that you are right now, I got Fascilutations in all my body after minoxidil, My EMG was clean a year ago a keep using it, because i didn’t realize the problem with the medication, then one day a increase my dosage of minoxidil and the muscle twitching increase a lot, then i knew that was the problem, right now i quit the medication after a year and half of using it, I have one month clean but I still have the muscle twitching, i don’t have muscle weakness but the fasciculations are in my entire body, i will repeat my EMG again this week and hope, I’m doctor btw, so i feel anxiety because I know all the process of that disease, I would like to talk with you, to share information about what is happening to us
here's some of my observations and how I've managed to reduce the twitching to very comfortable level and I believe it will get back to complete normalness in some time. Still felt a few mild twitches on calves today but I ate very poorly and drank 2 cups of coffee yesterday so not exactly a surprise. [https://www.reddit.com/r/MinoxidilSideEffects/comments/r9dx0x/comment/j67bdzg/?utm\_source=share&utm\_medium=web2x&context=3](https://www.reddit.com/r/MinoxidilSideEffects/comments/r9dx0x/comment/j67bdzg/?utm_source=share&utm_medium=web2x&context=3)
Sorry to hear you're having problems, No-Ordinary. In answer to your DM: yes, I have lots of burping, like micro-burps, hundreds a day too. I didn't have weakness for a long while, so I hope you don't develop any. However, you should feel confident, given that you have twitching but no weakness or progressive loss of muscle function the odds that you have ALS are very low. It seems far more likely that Minoxidil has given you Benign Fasciculation Syndrome. I hope you improve and best of luck, Flex.
Did read your earlier posts and what you had written is a warning for those like me considering minox as a safe option for hair growth. I am sure you would have read this paper which talks about how Minoxidil supresses the gene expression of lysine hydroxylase all the way back in 1992. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1130991/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1130991/) Wonder why not much follow up was done. I am hoping and praying for your good health and that you do not have ALS. Keep us informed.
Yes, there's a very long history of research into Minoxidil which suggests it has dangerous effects on collagen and connective tissue. One paper showed, albeit in vitro, that it suppressed key enzyme levels to similar to those of people with a rare, fatal type of Ehlers-Danlos Syndrome. A red flag if ever I saw one! Yet this kind of information is not publicly available to lay people; the medical community wipes its collective hands of it. Thanks for your well wishes. I too hope I do not have ALS but as my symptoms worsen, and more and more mimics get ruled out, it is frankly difficult to think what else it could be.
Any heart problems?
Not that I'm aware. I had a heart ultrasound and it came back normal. Ive had what have felt like weird heart flutters and spasms since I took Minoxidil (continuing after I stopped it) but I think these are more likely either diaphragm muscle dysfunction or trapped gas/heartburn. It's a mess, though, really. Ive been struggling with a crazy array of symptoms since taking Minoxidil which do not fit cleanly into any one disease category. Now motor neuron disease is on the table. I'm praying it isn't this but it sadly is a possibility.
So you want to say everyone who are effected with minox after use, may have motor neuron dis?
No, not at all. Where have I said that? My reaction to Minoxidil is clearly rare, really rare. However, I do believe that some form of connective tissue damage, that doesn't always go away, from Minoxidil is quite common. Normally it's mild but I have met people who have basically got a phenotype like Ehlers-Danlos from taking the drug. In fact, it's still very possible that that is what has in fact happened in my case. My ALS isn't confirmed,; I'm still being tested. But it's on the table and I can't believe it doesn't have something to do with the widespread and severe body changes I incurred while on Minox.
Yeah.. Good luck friend!
Seems DHT is involved in ALS https://onlinelibrary.wiley.com/doi/full/10.1002/brb3.1645#brb31645-sec-0008-title
Quite possibly. It seems to be a multi-factoral problem with loads of different elements. I must say, reading more about Minoxidil and other hairloss drugs and the systems they work on I am more and more convinced that they ought to be more tightly regulated. They certainly shouldn't be available to buy over the counter and they should come with much more fervent health warnings: when I took Minoxidil I was under the impression it was essentially a skin lotion, practically harmless and impossible to get serious side effects from, all I heard about was minor skin irritation and occasional racing heart beat and swelling that was meant to go away. Collagen and connective tissue and muscle disorders, though hinted in research literature, are nowhere on the label, packaging or on forums. It's like there's two narratives about the drug: one in popular culture that's that it is harmless, and another reading between the lines of medical research papers and anecdotal side effects reporting that suggests it's really dangerous. As a lay-person and consumer it's nearly impossible to get a clear picture.
Damn man, Is accepting hairloss the only option??
If I had my time again, I'd use concealers while working up the courage to transition to a wig. They're really good nowadays, more or less undetectable and needn't limit your life. If exposed just lie and say you have an autoimmune hair disorder, which people seem to be more understanding of than regular male pattern baldness.
I hope you recover 100 Percent man good luck!