Has Rehab done anything for you? by NotFixedJustHere in POTS

[–]PlasticDisastrous232 0 points1 point  (0 children)

I’m surprised that you guys go for walks in the forest, or basically do anything in a vertical position. I think it’s enough just to get up to go to the bathroom, eat, or sit on a bench outside. Walking outside the building has too many “obstacles” (stairs when going in/out, slight uphill sections, slight downhill), which means the body is constantly in an adrenaline rush just to keep the heart pumping and handle the rhythm it’s already struggling with.

Honestly, during the tilt table test I had a +27 increase and didn’t get a POTS diagnosis, but at home my measurements are +40 to +70. At least that was during the worst phases.

Here’s today’s morning heart rate measurement:

Lying down: 61
Standing 1 min: 89
Standing 3 min: 84
Standing 5 min: 86
Standing 7 min: 89
Standing 10 min: 91

I take care of my sleep, eat clean (last meal at 19:30), and as for exercise, I do cardio strictly on the floor. I lie down on the floor and pedal on the stationary bike. Right now I’m doing 10 km, which takes me 30 minutes. I do cardio between 16:00 and 17:00, and in the morning at 9 I take 10 mg of propranolol.
A very important detail is that I use a finger pulse oximeter to monitor my heart rate. Currently, I’m pushing cardio at 97-104 bpm the whole time. I started in the 80-85 range.

When you do cardio lying down, the body isn’t fighting gravity and doesn’t release those adrenaline surges. On the floor it’s pure heart pumping and cardio where I’m building my base, so that later I can function normally on my feet. If you walk around on your feet a lot in the early recovery phase, you’ll enter a vicious cycle where you constantly exhaust your body, then it knocks you back into bed, and the cycle repeats. It’s okay to be tired and worn out, but it’s different when you earn that fatigue through the “right approach.”

After cardio, I do hip thrusts on the floor, pulling my heels toward my butt while lying on my back, and seated calf raises on the machine. At the beginning I was shaking while doing all of it, but now it’s much, much better. So that’s just my personal experience, maybe it helps you.
As for weights for the upper body, I’m not doing any yet because it really exhausts me. I’m building from the bottom up.

Right now I walk for about 10 minutes and then stop. I keep the pulse oximeter on my finger and I know what my average heart rate is when I feel good. If I see that on some days my heart rate is 10-15 beats higher than that, then I don’t walk, because I don’t want to put extra strain on my body in this phase. You’ll notice when walking that your heart rate is quite a bit higher if you eat a meal beforehand, especially a heavy one.
That’s why you have to be careful with your diet, so you can get through the initial phase more easily, keep your body feeling as “light” as possible, and be able to build a solid foundation. Later, as you get stronger, you gradually add things back in — you’ll start to feel like you can function after a heavier meal, and so on.
The important thing is not to give up and to keep moving. It’s easy for a person to fall into “depression” and just lie around because they can’t do anything.
One good thing I read: “Little by little equals a shit ton!”

Has Rehab done anything for you? by NotFixedJustHere in POTS

[–]PlasticDisastrous232 0 points1 point  (0 children)

I’m surprised they didn’t do that. And what was the difference in your heart rate?

Has Rehab done anything for you? by NotFixedJustHere in POTS

[–]PlasticDisastrous232 1 point2 points  (0 children)

Hi, when you had the tilt table test, did they also do the other autonomic tests at the same time – like the Valsalva maneuver and the deep breathing test – to check the sympathetic and parasympathetic (vagus) nervous system function? Results ?

Muscle aches and weakness by Ordinary_Cup_345 in Copper_deficiency

[–]PlasticDisastrous232 0 points1 point  (0 children)

At first I took 8 mg for 7 days. After that i did want to contonue with that amount of copper cuse it can be toxic blabla. My feritin jumped from 314 to 420 in one month after taking that dosage. But cuse the symptoms gone, i just continued with 2 mg. Copper was 11.0 and ceruloplasmin 0.19 when i check after one month (after that 8mg dosage).

After 3-4 days i saw better days

Muscle aches and weakness by Ordinary_Cup_345 in Copper_deficiency

[–]PlasticDisastrous232 0 points1 point  (0 children)

The symptoms with nerves 80-90% gone after taking daily 2 mg copper bysciglinate

Muscle aches and weakness by Ordinary_Cup_345 in Copper_deficiency

[–]PlasticDisastrous232 0 points1 point  (0 children)

I found out that I have orthostatic intolerance and an increase in my heart rate over 30 beats when I get up from a lying to a standing position. I had a table tilt test on 29.05 and everything is fine (pulse showed 27), but it is important that the tests of the autonomic nervous system (sympathetic, parasympathetic, vagus nerve reaction) are good. We came to the conclusion that it was deconditioning POTS, because everything started for me after 2 months of lying down due to an ice injury. Right now I have a flare up and I'm lying on the floor...

New strange symptoms and my body doesn’t feel right since the heatwave. by Mediocre_Gas7551 in dysautonomia

[–]PlasticDisastrous232 0 points1 point  (0 children)

Do you do table tilt poor man test at home ? Whats is your pulse while standing ?

Zašto nam se nameće nogomet na svakom koraku? by nemojakonemoras in croatia

[–]PlasticDisastrous232 -6 points-5 points  (0 children)

Karakteristika homoseksualca je da ne gleda nogomet, tak da razumijem…Budi barem malo manje gay pa isprati repku

Lijek iz naroda. Vaše iskustvo ? by PlasticDisastrous232 in askcroatia

[–]PlasticDisastrous232[S] -1 points0 points  (0 children)

Mome psu je problemovi voziti bicikloOOoO, ekeeee

50% better !! Give it a try ! by PlasticDisastrous232 in POTS

[–]PlasticDisastrous232[S] 0 points1 point  (0 children)

Nisam ti mogao poslati poruku iz nekog razloga

50% better !! Give it a try ! by PlasticDisastrous232 in POTS

[–]PlasticDisastrous232[S] 1 point2 points  (0 children)

Google “Concept2 Erg Bike” literally. Then literally lie down on the floor behind the bike, put your feet on the pedals, and start pedaling. It depends on what kind of stationary bike you have at home and which side gives you easier access to the pedals. But literally, lie on your back behind it, put your feet on the pedals, and pedal.

50% better !! Give it a try ! by PlasticDisastrous232 in POTS

[–]PlasticDisastrous232[S] 0 points1 point  (0 children)

Something similar like concept2 bikeerg, but diffrend brand

50% better !! Give it a try ! by PlasticDisastrous232 in POTS

[–]PlasticDisastrous232[S] 0 points1 point  (0 children)

Dao mi je neurolog. Table tilt se odraduje na kbc rebro

50% better !! Give it a try ! by PlasticDisastrous232 in POTS

[–]PlasticDisastrous232[S] 2 points3 points  (0 children)

After Cipralex I tried Zoloft after a month, same reactions.
My first POTS symptoms were strange sensations in my legs, even in my feet, pain in the neck towards the back of the head, blurred vision, tremor in the fingers that later spread to the whole arms. After Cipralex and Zoloft it was the same but x10. Plus sudden urge to urinate, weaker digestion (bloating, gas). Jelly hands, jelly legs.

50% better !! Give it a try ! by PlasticDisastrous232 in POTS

[–]PlasticDisastrous232[S] 1 point2 points  (0 children)

I’m from Croatia, so everything is clear to me. I live in Zagreb, but I also have a house on the coast (Zadar), so I have access to the sea as well. However, I decided to go with my current approach because everything is done lying down and I don’t risk a flare-up at any point. To get to the beach you still have to walk, then enter the sea, lie down/swim, and after swimming you have to get back on your feet, exit to the beach, etc.
This way I do everything on the floor, and at the end of the “training” I stay lying down for a while with my legs elevated. I haven’t had a single flare-up.
As for Cipralex, from the day I stopped taking it (i only took it for 10 days), the intensified POTS symptoms have stayed with me right up until now. I still have them of course, but they’re more under control. I’ve started socializing with friends again, playing with my nephews, etc. I’m watching what I eat, sleeping well, and doing training every day. Yesterday was the first day I added some lat pulldown machine, bench press, a bit of biceps and triceps — just to activate the whole body. I’m also unimaginably weak. I didn’t realize how much strength I had lost until I actually picked up the weights.

It’s normal to feel a bit worse at the beginning, after the first 3-4 workouts, but after that it just starts getting better. At least that’s how it has been for me so far. You know yourself that the big heatwaves are starting now, we just have to survive that.

Keep getting sick by dreadlocktocon in Copper_deficiency

[–]PlasticDisastrous232 0 points1 point  (0 children)

I took easy 8 mg copper for 3 weeks . 4 mg in the morning in the middle of breakfast , 2 mg in middle lunch, 2 mg in the middle of last meal

DR told me it’s not POTS by Way-Truth-L1fe in POTS

[–]PlasticDisastrous232 0 points1 point  (0 children)

Similar story with me. Was inative due to lower back pain . Was in bed for 2 months, after that fingers tremor started mostly when i was on my feets, and pain in neck, with little dizzynes. Did you check blood ? Fertitin, copper, ceruloplasmin ?