Hi Wings,
Do you have a large belly? I see comments about ascites in your ultrasound.
Yes, I’ve had noticeable belly fat around my midsection for 20 years. I’ve never once had visible abs, even when I was an avid weight-lifter. Can you explain as cites to me in plain terms? I try googling it but don’t understand.
Going to try to see my doc again and get referred to a cardiologist, because something is very wrong. “Oh, here he goes again about his next problem.” The thing with my heart is that at the ages of 16 and 19 (first episode occurring at 12), I’ve had this problem, but it seemed to go away with a good, strict diet, and careful exercise.
Basically, when I was 12 I was playing outside, hit my thumb on a bar while swinging (the thumb was fine), but felt very weak, dizzy, and almost passed out. Laid down for 20-30 mins and it went away.
At 16, after gym class one day, I am extremely short of breath. Spent the entire lunch hour just trying to catch up on my breath. Also felt kind of weak, but just had to focus on my breathing. In the following weeks, would spit up actual blood (came from my throat, not my nose). Chest felt tight, shortness of breath would come and go. Eventually went away after a couple months.
19 years old, at the gym. Lifted too much weight, felt weak, felt like fainting, was pale (dad was with me and saw I was pale), chest felt tight. Over the next month, had tight chest, some shortness of breath. Felt like someone was squeezing my chest. Went to ER four times, did bloodwork, ekg, all normal. Went away after 1 month, was eating little and lost 20 lbs (went from 180 to 160 at 5’8”).
Now to this year, 26 years old. In Feb, wake up nauseous, sit up and feel extremely nauseous. Get up and go downstairs, feeling weaker by the second. Sweating, weak, so close to fainting (idk how I didn’t faint). Very pale according to my parents. Somehow got through it, went to er. Took my blood pressure -1hour after incident, was 140 over 89. Eventually went down to normal after a few hrs. Blood work, ekg all normal. Since Feb, have had dozens of nauseous episodes, sometimes feeling weak and faint, but only at night. Have to sit up and calm myself down. Now today, during the day, sitting at my computer, start to feel the symptoms, again have to try to fight through it.
Basically, I think I have a heart problem. Specifically, heart failure cause by something unknown. So maybe I’m just a weak person and this is why fin caused me problems, I just don’t have a good and healthy enough body to resist it’s negative effects or heal from them (not saying this is true for everyone, just possibly me). I’ll have to see a cardiologist, but if my doc won’t help me (I’m in Canada so I can’t just get whatever tests I want, have to be referred), then I well just spend all of my savings and go to the mayo clinic. I don’t care if I go bankrupt, I absolutely cannot live like this, wondering if I’ll have an episode and faint at anytime. It’s bad enough at night, but if it’s anytime, then there is something seriously wrong and it needs to be diagnosed. I cannot live like this.
Thanks for reading if you did.
Edit: just want to be clear I’ve never actually fainted, but I’ve come close a few times (all of the episodes in my life except the one at 12 are this year). Specifically, the incident in feb of this year, I actually phoned home as I was sitting on the couch because I was bracing for fainting and wanted my parents to know ( I was way too weak to talk, could barely muster out “help”). I did this so they would know I’m probably having a heart attack and call 911.
1 Like
Hey Wings, glad to hear from you, even if you don’t seem to be having a great time.
I am not doubting your experience for a second, but allow me to talk through my impressions here.
Firstly your problems occur every few years? I would take that as a positive thing. With the exception of having had the experience twice recently this doesn’t seem to be a regular occurance.
I don’t understand the timings of these events you describe some at 12, 16, 19 and 26 then say they’re all from this year aside from the first one, what have I misunderstood?
Have you considered that fainting feeling could be related to blood sugar?
How is your anxiety? https://www.healthline.com/health/anxiety/anxiety-chest-pain#:~:text=Anxiety%20chest%20pain%20can%20be%20described%20as%3A%201,5%20stabbing%20pressure%206%20chest%20tension%20or%20tightness
Just some things that I think you could do well to eliminate before seeing a doctor, who might attempt to say those things are the root cause.
1 Like
Hi Greek,
Thanks for the response.
I got not sleep last night so the post I made was very disorganized. I was trying to give a history of when events like this have happened to me. For this year, I have had dozens of these events since February. They’re usually just bad nausea (really bad), but can sometimes have the sweating, weakness, close to fainting. Maybe a third of the total events this year are the fainting ones, the rest just nausea. At first I used to think it was good that I went years without experiencing anything like this (from 19 until now). But when I read about early heart disease, I’ve read from reputable sources that the heart in the early stages compensates for this problem by growing more muscle, which can lead to an enlarged heart. This is a bandaid, not a solution, as it will only lead to more problems down the line. So that’s why I’m so worried. One day I could need a heart transplant (hopefully not of course, but that’s the fear).
It definitely could be related to blood sugar, though. I honestly think it is, but I’ve had my a1c and blood sugar tested this year and both came back fine. But, supposedly diabetes can sometimes be tricky to catch, so it’s possible I have type 1/2, or pre-diabetes.
My anxiety comes and goes. But, sometimes I’ll have no anxiety and then all of a sudden I’ll have one of the episodes I’ve described. So it doesn’t seem related. But I’m seeing my doctor tomorrow thankfully, so hopefully he’ll refer me to an appropriate specialist, otherwise if not, I’m heading to the Mayo Clinic.
Thanks again.
Can I suggest that you spend some time today, before your appointment collecting your thoughts on this and writing down what you want to express to the doctor.
I suggest you want to say something like this:
“I’m really worried about this and I’ve made some notes so I can tell you clearly what has been going on. I’ve had a history of this fainting feeling. It feels the same every time (describe it). As soon as it happens, I recognise the feeling. In the past I could go a long time without experiencing it, but this year it has happened repeatedly, more than it ever has before and the frequency seems to be increasing. I don’t know what could he causing it, there isn’t anything I’m aware of that is a trigger.”
But I’m not a doctor. I think if you go in, having had no sleep and your thoughts are all over the place, you might not be able to express this in a way that the doctor can act upon appropriately.
Good luck.
2 Likes
Yes, I will collect my thoughts. I have been already. Thank you for the wording as well, it’s very helpful. I’m going to do all I can to sleep tonight. Thanks again, I really appreciate the support.
1 Like
Went to my doc two days ago, was feeling decent. Told him about the events, then said that I think they’re related to me eating an abundance of carbs (idk if this is true or not, felt true yesterday). He’s setting me up with a dietician. I felt optimistic two days ago.
Woke up yesterday with a heavy tight chest, felt weak and faint-ish, mild occasional nausea. Took an aspirin, didn’t do much. Took another one a few hours later, didn’t do much. Went to ER yesterday evening, had ekg and blood work. All normal, was sent home by er doc.
Laying in bed right now, can’t sleep. Still feel weak and faint-ish, but chest isn’t very tight or heavy. Can’t shake the though that this could be coronary arterial spasm. Let me explain.
A month ago I couldn’t sleep at all, brain wouldn’t turn off. Had bad finger twitches, then bad twitches in other areas like legs, arms, etc. Was worried i had Parkinson’s. couldn’t use a mouse with right hand, was too weak and shaky. Eventually went away, but then coincidentally I started these heart problems more frequently and more persistent.
As I’m laying in bed wondering if my arteries are twitching, I press my hand on my chest. I can literally feel the chest muscle twitching. Thinking it’s my heart beat, I check my pulse, but the tempo doesn’t match up (pulse is slower and seems ok). So I can literally feel my chest muscle twitching fast. Wtf is this??? So now my freaking heart is twitching?! No wonder I’ve almost passed out if that’s the case. Idk how I’m even alive or how I’ll ever get over this.
1 Like
If I eat a sizeable meal, especially if said meal contains at least a moderate amount of carbs, I experience one of these episodes mentioned above. I believe it’s something called postprandial hypotension. This can be caused by nerve damage, which I think I may have. This can be induced from diabetes, Parkinsons, or other sources (PFS). So that is what I think could be going on here. Digestion is a big deal for the body, because it has to send a bunch of blood to the stomach and intestines. If you have this condition your blood pressure gets too low, and it can cause nausea, angina, light headedness, faintness, weakness, etc (https://www.health.harvard.edu/heart-health/eating-can-cause-low-blood-pressure). So I think PFS has caused me nerve damage over the years and now this is what I have to deal with. I wonder if there’s a way to heal nerves…
1 Like
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.
1 Like
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
2 Likes
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.
2 Likes
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.
1 Like
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.
2 Likes
It doeant help the cause lol. One day we’ll be exonerated
2 Likes
It’s a good point actually. Every visit is a chance to sow the seed of changing someone’s mind.
2 Likes
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.
1 Like
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
2 Likes
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.
1 Like
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
2 Likes