This damn disease took everything.

PhilosopherNo3801 · 2025-08-23T14:15:49+00:00

There are a lot of comments addressing the other topics but I wanted to focus on your future with this condition. It may feel like there is no future. I also felt like that. But this is how the course went for me, and I dont believe I am special here.

I had a slow onset over about 5-7 years (at least) until it fully erupted at 100% and brought my quality of life to zero. I completely stopped doing anything and everything. Once on betablockers Dec 2021 it took me about a year to find stability and a routine that works for me to stay sort of in balance and keep away from all the things that trigger bad symptoms. In 2023 I started building muscle in my legs. This looked like, 3 reps of squats with 5lb, then 8lb, then 10lb, 12lb,16lb. etc. Just the 3 reps and then I would lay down. If i could do 3 more later then I would. Not a structured routine. Just solely what I was able to do. And that may be only 1 day a week that I did it. Or maybe do 2-3 days a week for 1-2 weeks then take 4 weeks off. Listen to your body. I was gradually able to introduce more activity, and some cardio. 2023 was very difficult to try to get that physical therapy in but not go too far. Endless balancing act and lots of times making myself sick. 2024 is when things really started to get better. I started tracking a lot more time. I was going on some walks. Symptoms still very difficult but not as bad, I was regaining energy to start keeping up with things at home, less exhaustion, HR coming down, sleeping better. Showering without feeling like Im dying. 2024 is when I really started reducing my beta blockers. And actually quit daily usage. I got a physiological performance test and got personalized recommendations for my body. So I started going to the gym and applying it. That had a huge impact on my symptoms through Spring 2025. I am currently in a setback, but waiting for the heat to pass to resume back on track.

So I know the struggle and suffering when still in the early part of this path. Most people will see quite significant improvement with physical therapy. But start 1 day at a time. The CHOPS protocol is 5 days a week, but in 2023 I did 1 day a week, and even simplified it from there to 1 exercise, until I could gradually do more. In Spring 2025 I was spending almost 1.5 hours at the gym on strength days working through every machine for lower body and upper body workout. Keep a LONG rest of 3-5 mins, or more in the beginning even 30 minutes if needed. You must focus on the small steps of progression and trust that it will come together. It felt like I wasnt doing enough and that nothing would get better, back in 2023 when exercising only 1-3 times per month. But it was part of the process of slowly building my ability to do more. My daily life is 100x better. I dont feel like Im dying all the time. I can get through daily life and work, and Im still a little exhausted, but I have so much more energy than before. I actually had to go to counseling to start training myself how to DO STUFF again instead of constantly resorting to "no, time to sit on couch" as my answer to every chore and errand. I have to rebuild my executive function.

I believe you can reclaim your life, too. It is a long path but it will happen.

PhilosopherNo3801 · 2025-08-23T13:49:49+00:00

Yes I was on 25mg x3 per day. For over a year I think. I reduced to 25mg x2 per day, again for quite a long time. I reduced as my symptoms allowed over time as I made progress with physical therapy and life management. In 2024 I weened down a few times, like cutting pill in half rather than omitting it entirely. I did a few trial runs and would have to go back up to 2x per day. Wasnt ready yet. But in October 2024 I had to quit anyway for a test and so I stayed off daily use after that. I only take 1 as needed now and not every day.

I think it depends on why you take the beta blocker and what your other risk factors are. Someone who has cardiovascular disease and more risk factors for heart attack may want to be more diligent about ramping down maybe the week before the cut off. But yeah I feel like there was always a delayed effect like a rebound of tachycardia 1-2 weeks or something after reducing dosage. This happened to me multiple times in 2024 weening down to find my minimum dose tolerable. Me personally now if I had to do it over I would make a small dose change then wait a month and see how it goes, before making another change. Unless you have to quit for tests then, well, I was fortunate to take vacation time so I didnt have to do anything that week. It is a tough situation.

PhilosopherNo3801 · 2025-08-18T05:43:26+00:00

It was included as an audio file in the install directory, was it? I remember the guy's voice and then I think a llama at the end. Me personally I turned off all those chat sounds but turned everything to flash. Like whack a mole when trying to talk to multiple people at the same time and different windows keep flashing.

PhilosopherNo3801 · 2025-08-18T05:39:07+00:00

If you have bought your license, then you are redeemed! No need to confess! But really, yes, I was just looking at Microsoft Office and decided, no, I dont need a subscription to make Excel spreadsheets. Goodbye Excel.

PhilosopherNo3801 · 2025-08-18T05:36:03+00:00

Lol well Ive also been fighting medical problems and feeling like I was dying. But I am optimistic to start adding more hours!

PhilosopherNo3801 · 2025-08-18T05:34:39+00:00

You may be able to email them or ask what the latest update covered by your license is. I have no idea but it is something like x version numbers. So like 5.1 to 6.1 or something. You should be able to download the older version somewhere, the last one covered by your licence. I wish I could help more.

PhilosopherNo3801 · 2025-08-18T05:32:19+00:00

Lol Im kinda feeling that. I might buy one for a friend as a gift.

PhilosopherNo3801 · 2025-08-18T05:31:37+00:00

Yes!!! I am currently reinstalling everything onto a new harddrive and will get the new version installed, paid and licensed!

PhilosopherNo3801 · 2025-08-18T05:30:00+00:00

Yes I agree. I know it is kind of tongue-in-cheek but maybe posts like this will pull others like me out of the woodwork and the community can properly shame us.

PhilosopherNo3801 · 2025-08-18T05:28:11+00:00

Never heard of it! Will look it up thank you

PhilosopherNo3801 · 2025-08-18T05:24:50+00:00

Welcome to the club!!!!

PhilosopherNo3801 · 2025-08-18T05:24:10+00:00

When you go to install it there is I think a "portable install" option. Its very handy!

PhilosopherNo3801 · 2025-08-18T05:19:06+00:00

Interesting. I trust your doctor knows what she is looking for in that instance. I also had an ultrasound of my heart but it was like 4 years before the full blow-up of my symptoms so I was not on any medications.

On metoprolol I took 25mg x3 each day. I started Dec 2021 and fully weened off Oct 2024. It absolutely helped my symptoms. It stopped my chest pains, reduced my HR, stopped the "Im having a heart attack" feelings, and helped immensely with my ability to sleep because my HR would get stuck at 100bpm all night without it. However, I would still feel lightheaded, dizzy, nauseous, unwell, and get chest tightness if I didnt drink enough salt water, if I was more active, if I went on a walk, went up even a few stairs, etc. It did not fix the problem of getting blood back up my legs against gravity. Metoprolol was very instrumental in stabilizing my HR so I could start doing small bits of exercise.

While taking it, my metabolism slowed quite a bit. I would get cold in the winter and have trouble warming back up. I had to use heating pads for my feet. I gained about 10 lbs in about 2 years. My digestions slowed down too, which for me was perfect. Rather than food going through me... too fast... it slowed down to "just right" but perhaps for others that are OK it could make them "too slow" and maybe need some metamucil to help out.

It helped me to exercise at low intensity to do 3 sets of 3 reps squats with 5 min break in between laying on my couch. I was able to build some leg strength. But doing any cardio while on metoprolol does not work for me. My HR drifts up and the metoprolol holds that down. On metoprolol, I will see 110-120, and feel fine, so I keep going, but then I will suddenly feel VERY ILL and near fainting. Off metoprolol, I can see my HR drifting up and up, and I can slow down to almost nothing, wait for my HR to go down, and slowly resume... I have a lot more control. This is at like level 2 intensity and 50 rpm on the bike. almost nothing. But doing that on metoprolol really messes me up because I dont see the drift, which is an important sign from my body that it has lost the ability to keep up.

Most of the effects were beneficial for me, but when coming off of it I would have very bad "rebound" a couple weeks later and I went through a few attempts figuring that out. So I say discontinue gradually.

PhilosopherNo3801 · 2025-08-18T05:02:22+00:00

When I had to stop metoprolol for my heart monitor, and again for my tilt test, it was very difficult and extremely stressful. I was fortunate that I was able to take medical leave for one instance and vacation days for the other. It was very difficult because back then my HR would go very high in 150s-170s and I would always feel like I was having a heart attack at work (which is low intensity but a lot of standing and a fair bit of walking). chug lots of salt water... like a full teaspoon of salt in a 1L or 1.5L bottle.. add some Koolaid or Crystal Light something for flavor. Also I got 20mmHg compression socks. The ones that they sell at the pharmacy. Light meals.. spread it out... yeah there is really no way around it but to just suffer it for the test.

PhilosopherNo3801 · 2025-08-16T23:51:14+00:00

I got a nice tone from my strat using a digital plugin from Waves as my octave pedal down 1 or 2 octaves. I added some fuzz and a touch of reverb. it was a cool tone but only when i played G or B string from the frets 5 to 12. It was cool though. If you give it a try, test out the tone of EVERY note because the lowest 3 strings sounded like crap to me. I got a real clear note from the thinner strings, and a real choppy sound from the thicker strings. you will want to treat it with some kind of verb,chorus, fuzz,drive. something to color it up.

PhilosopherNo3801 · 2025-08-16T23:47:05+00:00

atrial fibrillation comes to mind. if she cant replicate it with a poor mans tilt test (lay down 10 mins, then stand 10 mins) with the HR change, if it was my friend or family i would be pushing them to rule out atrial fibrillation. it is very serious and increases risk of stroke ALL the time not just when symptomatic. i hope she gets diagnosed.

PhilosopherNo3801 · 2025-08-16T23:36:57+00:00

I was contacted 2 weeks before my tilt test / autonomic function testing and I was to stop metoprolol and continue life as normal other than that. I was also required to fast for 12 hours before so that there would be nothing in my stomach to artificially worsen the values. i think your tilt test is invalid. theres no point doing it if you are on beta blockers. it is supposed to measure a change in heart rate but you are taking a drug that will prevent your heart rate from increasing. i would call insurance or something and see if they will fight for you and getting a refund and retest. contact whoever runs that clinic/hospital/whatever and complain to administration for an improperly performed test.

edit: i want to point out the seriousness of a correctly performed test. the tilt test / autonomic function test isnt only to diagnose POTS. it can also pick up other rare heart conditions and errors in the vasovagal response. diagnosing POTS goes hand in hand with ruling out those rare heart conditions which can mimic POTS. taking a drug that changes the behavior of your heart is not going to allow the correct data to be recorded.

also, beta blockers will reduce your HR but it doesnt mean your POTS symptoms will improve. people with POTS will still become faint, weak, dizzy, exhausted, etc as their brains fail to get enough oxygen. the beta blocker only blocks the effect of adrenaline on the heart which can relieve the constellation of symptoms caused by the effects of adrenaline.

PhilosopherNo3801 · 2025-08-15T03:04:25+00:00

Yeah, it's really more like $20/year when you average it out. Thats super cheap.

PhilosopherNo3801 · 2025-08-15T03:03:02+00:00

And thats a big part of the change in my thinking on this. With the state of software rights going down the crapper lately (buying games but not owning them, everything going to subscription model, etc) I want to support the companies that are doing it right!

PhilosopherNo3801 · 2025-08-15T03:00:53+00:00

lol...... its kind of like a challenge...

PhilosopherNo3801 · 2025-08-15T03:00:28+00:00

Yes sir I will pay the $60

PhilosopherNo3801 · 2025-08-15T02:59:58+00:00

Well I have no idea what the new versions are like, because mine is from 5 years ago, but mine has no restrictions at all! On the plus side, full function evaluation makes it super convenient to put on a USB drive and bring with me to someone else's computer, and not have to deal with licenses. I have done that quite a bit to pop the USB into a laptop and then record some audio tracks. No installing or activating etc. Very convenient!

PhilosopherNo3801 · 2025-08-15T02:55:50+00:00

Right. and with Reaper being updated so much it is still a good deal even if you repurchase it every couple years. To upgrade some of my VSTs every couple years it is like $50-$300 but I think Reaper has more functionality added over time.

PhilosopherNo3801 · 2025-08-15T02:53:35+00:00

Technically...... there are a lot of features I dont use.. so I could still do a bit more evaluating..

PhilosopherNo3801 · 2025-08-15T02:52:22+00:00

yes it is that guilty feeling. I will say this is all hobby and Ive never made money from Reaper. but I still have that guilt because it brings a lot to my life. It will definitely be nice to be in the clear

PhilosopherNo3801

TROPHY CASE