F*ck I feel terrible. Can’t sleep cause I’ve got these weird internal twitches. Can feel in my abdomen and chest. It’s messing with my heart, I feel weak and faint and nauseous. I think it’s nerve damage, multiple system atrophy maybe? I can’t believe that almost 4 years off of finasteride and I feel worse than I ever have in my entire life. Despite exercising and eating healthy.
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Hello @Wings as im reading through your posts i must say i realy feel for you and can only imagine that this must be terrifying and each time you must have worried/wondered that your number might be up. Id like to add something if i may which i hope will bring some re assurance / comfort that this part of pfs for some.
.My BP was always text book, i could put myself through rigorous exercise at full tilt, i was extremely fit. Then about 8 years ago “prior to knowing i had pfs” i started losing my balance for no reason, especially when playing with my nephews, it felt like id got off a fast fairground ride. I started to worry i must have an undiagnosed heart defect. Id get regular treatment at hospital for a none related condition where I noticed my bp readings were no longer steady. I also noticed occasional feelings off palpitations in my chest, like a fish flipping, sometimes crushing pains. Then 5 years ago while i was taking krill oil to try to help with my new found unexplained dry skin. My muscles became granite like 24/7 for weeks. I felt extremely strong and was in the gym when an episode hit. I fell to the floor and an ambulance was called i thought i was on my way. My bp was off the scale and they took me to hospital. Over the course of the stay things gradually returned to nornal and a brain scan was run to check for a stroke. Nothing showed up. I now know that krill oil was the culprit(5ar). Since then ive continued to have episodes inclusive of head aches.'but not as bad" ive noticed that food plays a part in the onset. I found that high pottasuim foods, complex carbs as well 5ars can trigger such issues. I still have some of these foods on occasion due to the limited choices but on this basis they feel/ seem to be relatively safe. Though on a daily basis they become very problematic with this symptom as well as many others. Re assuringly i dont believe you have any underlying concerns such as a dicky ticker. I stopped all pottasuim permanently for 12 months and it seemed to help settle frequency and improve the basilne on this. Hope this helps a little.in terms of youre mind spiralling into end of days thinking. To add I tried pottasuim supps for the fainting feeling and dizziness 8 years ago to see if it would help but it made me much worse. I was confounded / shocked but as said i didnt know about pfs whichis why i then eliminated it years later. Good luck going forward
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I think that might have been a mistake.
Really, I think you want the doctor to do the diagnosing and let them ask relevant questions. If you go back, you’ll have to now explain away what you offered as a reason already.
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Ive blurted out similar things with Drs even as recent as yesterday and regreted it. I told my proff that food plays a big part in symptoms. True but embarrassing.
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Oh yeah, easier said than done.
I had an appointment where I realised what I was saying sounded so ridiculous, so implausible that I knew I’d shot myself in the foot.
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It doeant help the cause lol. One day we’ll be exonerated
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It’s a good point actually. Every visit is a chance to sow the seed of changing someone’s mind.
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Big mistake. I was feeling decent that day. Shouldn’t have anchored him to that.
@LazarusRy Really sad to read all of that. I always thought potassium was good for stoping twitches. Must’ve been horrifying to actually faint. I appreciate the input though.
Idk guys. I’m sure I have a reputation for being dramatic but hear me out. Up until this year, the symptoms I’ve had have been life changing in an annoying and inconvenient way, but never a life-threatening way. Now, they feel life threatening. I seriously think it could be multiple system atrophy, which if it is gives me 7-10 years to live. When pfs starts interfering with sleep, when you repeatedly come close to fainting, when you continue to weaken, these are debilitating affects. Right now my neck and finger feel stiff. About a month ago I woke up with stiff arms, like i had just worked them out in a gym for 1-2 hours. How the hell do you wake up with stiff arms? I can tell there’s a serious brain problem. Have hardly any libido. Hardly any dopamine, cannot enjoy anything like I used to. I can’t believe this has started 3.5 YEARS off of finasteride. If this continues to get worse and I actually start fainting, I’ll probably die from head trauma from falling.
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There are a few of us in this boat @wings who have very worrying symptoms and continue to decline but astoundingly the body / brain continues to function to a degree. I thought id be gone within months four years ago yet im still here and i remain hopeful ill get out of thiis one day. Keep hope and faith my friend
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Thank you Lazarus. I’m hoping that my body (and all of ours) can adjust to whatever this is and find a new way of operating. The body is smart; it’s built for survival and adjusting to whatever is thrown at it. Why we develop new symptoms years later is beyond me, but again my hope is in my body’s ability to adjust and rebalance. A cure would be a miracle, but that seems unlikely given how years later I’m developing new problems.
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I always say this but imagine how amazing life would be to have this in the locker behind you. Nothing would bother you again youd laugh at the minor shit that bears down on normal people. Think positive and believe its the best medicine
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me too same now 2.4 year off 28 yo with chronich gastritis heart same problems after 6mo of use sides since 1st pill
dont know what to do
we just only wait
big sides started after 1an half year of stopping
now pain every where insomnia eveen with benzo
but im not loosing faith . i wont end my life .
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I’m sorry to hear what you’re going throught.
I hope you’ll recover.
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Yesterday and today I’ve been short of breath to the point that I’m always thinking about my breathing. Nothing normal about that. Right now, have chest pain, squeezing/tightness feeling. Been experiencing chest pain on and off for more of this year.
So I did some internet searching for young people with heart problems, and found the story of a 25 year old woman who had heart problems. They worked on her, did tests, did a heart transplant (!), and yet 3 months after her transplant, she continued to have problems. It was found out that she had mitochondrial disease.
Upon looking up mitochondrial disease, I fear it’s what I have. It explains all of my symptoms. It can cause heart problems (angina, heart attacks, shortness of breath), gastrointestinal problems (I’ve had this for years), urination issues which I’ve had for many years, muscle weakness and fatigue which I’ve had all year, vision and hearing problems which I’ve had for a few years, diabetes which I THOUGHT I had, learning disability which I have (diagnosed in 2018, started drug 2016 quit in 2017), lactic acidosis (I will go into detail on this in a bit), and other issues. I listed the relevant ones to me. Guys, this is what I truly think I have, which if I do, is horrible.
Upon thinking that I have mitochondrial disease, I finally requested an appointment with the Mayo Clinic in Rochester, MN. If I’m going to die young, I want to at least have a CONFIRMED diagnosis of what the hell is wrong with me, and what caused my suffering and eventual death. I’ll probably have to get a muscle biopsy, which should be fine, as I’m willing to go to great lengths to find out the problem. Hopefully I have enough money for this, if I don’t then I’m wasting my time and yours.
To explain the lactic acidosis. So my understanding is that this is a buildup of lactic acid in the body. I’ll try to explain all of this briefly, but the summary is that I think I’ve had mitochondrial disease my whole life (or at least as early as 16), and finasteride exacerbated it.
So heres the story. I first suffered from heart-like symptoms at 16. Had shortness of breath so bad, it took me one hour after gym class to fully catch up (this was during lunch I remember, was too afraid to eat cause I just wanted to breath). Would spit up blood as well, everyday. Basically appeared to be heart failure. Would feel a pressure in body that would move around every few hours. Would start in left arm, then go to neck, then chest, then right shoulder, then right arm. I’m thinking this was lactic acid buildup. Ate really healthy, prayed, and after 4-6 weeks I got better and didn’t experience it again for a few years.
At 19, I’m doing a workout at the gym. I over exert myself on a machine, and start to feel weak, short of breath. Go to sit down somewhere, my dad walks by, says I’m pale. Go to the er, get checked out, “nothing wrong”. Had a tight/squeezing chest everyday for one month. Also had the same lactic acid feeling as when I was 16. It was like a ball of pressure that would appear in a place, then move later in the day. It was awful. Ate really healthy, actually lost 20 pounds, eventually felt better after 4-6 weeks. Very similar to the incident when I was 16.
Never had any heart problems until this year, in february. Woke up at night, was weak, nauseous, fatigued, sweating, couldn’t say more than one word, tight painful chest, almost passed out but didn’t. Went to er, blood pressure was 140/82, they do tests, determine I didn’t have a heart attack, send me home. but ever since then, on and off I’ve had the same heart symptoms, just like when i was 16 and 19.
So now I think I’ve had mitochondrial disease since I was at least 16. The lactic acid buildup thing is what’s got me convinced. That’s just not normal to have that at that young of an age. Now it was never diagnosed, but it sure seems like thats what I had looking back. So, I think finasteride has exacerbated a condition that I suspect I already had, and I am going to the Mayo Clinic in Rochester, MN to determine this. I don’t have a date yet set, but am awaiting their call to set up an appointment.
Sorry that my spelling and grammar are horrible. I write a lot better than above, it’s just that this is such a horrible way to live and has consistently gotten worse. It’s hard for me to be motivated to care about seemingly trivial things like grammar when there’s a not insignificant possibility that I have a serious permanent disease that has robbed me of my youth and will probably lead to a premature death. Of course, I sincerely hope this is NOT the case, that maybe it’s stress that is causing problems (and I am stressed and have been since I was 12 in all honesty, but that’s another story, and not stressed 24/7, but generally stressed). But that whole lactic acid buildup is what’s got me convinced. I didn’t even know about that until this year when an alternative health practitioner suggested it to me. Now I see that mitochondrial disease can cause it, so it’s got my suspicions up.
One other really interesting thing to note. The alternative health practioneer (who people swear by) that I’ve been seeing since late last year has, upon evaluating my body, always prescribed Vitamin B-complex supplements (contains, B6, B12, B1, and others). So, she’s detecting that my body needs this. Well as it turns out, the supplements recommended to treat mitochondrial disease include Vitamin Bs! Also, when I took L-Arginine (or Carnitine? cant remember) years ago when I had pain in my member, it helped. Well, this is also recommended as treatment for mitochondrial disease! Also, COQ10 is recommended, and while I haven’t taken that, I think others here have and say its helped them. So basically, the treatments that have helped me are recommend to help mitochondrial disease. So thats another reason why I think I could have it ( but of course I don’t want to, I just want to know what I have and not be in the dark).
My doctor in Germany also prescriped me a high dosage Vit B Infusion cure.
I have to start up soon, muscles become weaker and weaker.
What vitamin B12 did you get? I mean the form and the dose
Methyltetrahydrofolate, 400 mcg, taken twice per day. Bottle is called “Veeva Theanine & Magnesium”
I think this is a mitochondria problem. The scary thing is that if it is, I don’t think there’s a cure.
For over a year now I’ve been suffering from strange symptoms. Some have gone and not returned, others come and go, and others persist. The lingering ones are chest pains (squeezing, tightness), shortness of breath, daily nausea, fatigue, heart palpitations, and sometimes feeling faint. Also some exercise intolerance.
Now while I don’t have an official diagnosis, the research I’ve been doing leads me to being very sure I have Coronary Microvascular Disease.
Your heart has major arteries. This is typically where things go wrong: one or more of them gets blocked and you have a heart attack. But your heart also consists of smaller arteries that branch off from the main ones and deliver blood to the heart. With CMD, the tiny arteries are damaged (the endothelium) and cannot properly deliver blood and nutrients to the heart. And that’s when angina occurs (micro vascular angina).
Now this is very sad for me to have at 27. There is a treatment being worked on but it’s not yet out. But it’s sad how my quality of life has taken a nose dive. I struggle to eat 1600 calories a day. I spend ~2 hours a day just eating (not counting cooking or cleaning up). If I eat too much, I’ll feel like I’m going to pass out or have a heart attack. And the thing is that IM RIGHT. My heart IS struggling to keep up. It’s NOT anxiety, or at least not exclusively anxiety. Of course I’m nervous to have this condition. But all I can do is take one day at a time and hope it either goes away (which it has in the past, although the space between flare ups continues to decrease) or I die instantly and end this nightmare.
Anyways, I thought I’d mention this in case any of you have similar struggles and symptoms. It seems like no one else here does though, which is good, but in all honesty makes me lonely and sad. Why did I have to be born such a freak?
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