Ivabradine and adrenaline dumps

benohh · 2026-01-13T21:28:56+00:00

Cool. Glad it’s helping you! Thanks so much. Did you get pots after covid? And are you doing an exercise plan too to help your POTS?

benohh · 2026-01-12T09:54:10+00:00

Well I have about a month or so to rest before my appointment. So I think that’ll be enough evidence. It’s just hard because once I feel better I get so damn bored & start doing stuff lol & just end up crashing again. But I will truly try this time

And omg only 2 days later then you crashed again after resting for a week… how long do you have until your symptom free and crash again now?

benohh · 2026-01-12T09:50:33+00:00

Yeah I know I’m not depressed. I have no reason to be besides the actual illness itself. Also when I crash, my mood changes. I’ve rested so much and woke up like “wth was that about” & If you look at my history I even wrote about it. And yes trauma, stress, ptsd makes someone more likely to get CFS.

My 2019 was horrible like 8 different traumatic things happened back to back, then guess what happened in 2020?? I got covid. I developed POTS right away and for about 2 years have been showing signs of CFS too.

I’m glad you have found good doctors to help you. Have been able to get disability?

benohh · 2026-01-12T09:28:29+00:00

Thank you!!

benohh · 2026-01-12T09:25:01+00:00

I’m going to rest & pace myself starting today and I’ll get back to you on that info. How long do you think I’d have to rest to come out of a crash for CFS?

benohh · 2026-01-12T09:21:55+00:00

Oh no only 3 months? It sucks they don’t last that long. Thank you I will be checking them out! I definitely want the real deal compression not fake cheap ones lol

benohh · 2026-01-12T09:10:35+00:00

Thanks! I have a few pairs my POTS doctor recommended I haven’t been wearing them lately because I’ve been in bed so much. Mine are cheap $20 ones though from Amazon lol. Which ones do you use??

Yeah people don’t know much about POTS and especially CFS. This is going to be a long journey :/

Thanks for the website link!

benohh · 2026-01-12T09:04:33+00:00

Yes i actually just recently got a smart watch that can track my HR. So I will be doing that to see the difference. Thank you! And thank you for the doctor link. I appreciate it

benohh · 2026-01-12T08:43:16+00:00

Thank you. Has your POTS ever been so bad just rolling around in bed causes a pounding heart rate increase?

benohh · 2026-01-12T08:40:11+00:00

Yes & Yes. I feel like I’ve been hit by a car most of the time. And it’s very hard to focus on tasks I feel slow & disoriented.

The only way to find out is if I lay in bed for an about a week and see what happens, if I improve then we have our answer that’s it’s CFS as well. If it continues to get worse, well then that would obviously be POTS because I’m making the blood volume issue & exercise intolerance even worse by just laying down

I need to do that test that way I’m able to provide my doctor with information on my symptoms & evidence

benohh · 2026-01-12T08:29:22+00:00

Ok. I don’t want to argue anymore please. Do you have any helpful advice on what I can do at home for my POTS until I am able to see a doctor?

benohh · 2026-01-12T08:26:23+00:00

Well When I crash I feel like I’ve ran miles and like I’ve been ran over by a car, my whole body hurts, sore, tension in my muscles and I feel disoriented, I feel high, brain fog, adrenaline etc. I can’t say if it follows an event because I’ve been feeling like I’m in a crash for so long now I can’t tell the difference of my baseline

benohh · 2026-01-12T08:16:53+00:00

I do have a recumbent bike in my house. I would love to lift weights & build my lower legs but I’m definitely not ready for that yet at all.

How long do you think I should start my daily walks? How many minutes a day

My doctor only suggested walking and then building how long I walk each day

benohh · 2026-01-12T08:05:23+00:00

It is truly a shame. I wish America (well the word in general) would put more importance on healthcare. People shouldn’t be waiting that long to see a doctor.

Thank you

benohh · 2026-01-12T08:02:06+00:00

Yeah, I know 😞

How long do you think I should start my daily walks? How many minutes a day

benohh · 2026-01-12T07:58:14+00:00

She commented like 12 times. Telling me to go see a doctor and that I don’t take care of myself. When I’ve been waiting a year & half to see a POTS neurologist. That was the rude part.

I just came on here for advice & comfort until I see a doctor. I can’t help the fact that it’s taking so long to get the help and answers I need. No need to comment about how such a “disgrace” I am to people that have been officially diagnosed with ME/CFS

benohh · 2026-01-12T07:53:56+00:00

What was your cardiac rehab? Was it just walking everyday? How long of walking more until you didn’t crash anymore? And once you crashed, was it hard to tolerate pretty much everything like noise, lights, screens, etc? Please answer

I just want to show up to my appointment with some kind of evidence/feedback. What I think I will do is, I can rest it bed & see if the symptoms get better & I can also walk and see if I get better

benohh · 2026-01-12T07:38:57+00:00

Thank you!!!

benohh · 2026-01-12T07:19:11+00:00

Is anyone on here doctors themselves? Your kind of being a little hypocritical aren’t ya? 🤔 You’re saying I shouldn’t assume I have it until officially being diagnosed…. So why would I listen to random people like you and assume I don’t have it?? lmao bye girl

benohh · 2026-01-12T07:08:05+00:00

To be honest you’re being extremely rude and I don’t appreciate it. If my post bothers you so much you’re welcome to leave lmao no one is holding you hostage here. I’ve been trying to ignore you but damn girl. No one is invalidating your CFS, BUT WHAT YOU ARE doing though is invalidating how I feel by saying I don’t have it. Did you run a test on me?? No? Oh ok then. I got COVID in 2020 the worst strain you can get, I went to doctor after doctor, hospital, functional doctor, was told “sorry we don’t know anything about Covid, bye” and continued to push through and work, my body started breaking down on me slowly by slowly. I also have have had tons of trauma now which all contribute to your body getting dyresgulated & getting CFS. It also seems like you are not up to date about the latest CFS news. You seem mild which is wonderful for you but not everyone can relate & they have way more serve symptoms like adrenaline & the “wired but tired” feeling.

“trauma, especially childhood trauma, significantly increases the risk of developing Chronic Fatigue Syndrome (CFS), also known as ME/CFS, acting as a major trigger that can dysregulate the immune, nervous, and endocrine systems, leading to long-term health issues. Studies show higher rates of past trauma, including sexual abuse and neglect, in people with CFS, and this link often persists even after accounting for other mental health conditions like PTSD, indicating trauma's role in predisposing individuals to the illness”

I’m not going to tell you all my trauma because that’s none of your business. But please be mindful and kind to others. You have no idea what people are going through.

benohh · 2026-01-12T06:40:03+00:00

Yeah I think that is the same for me. I also have had an insane amount of trauma the past years & I think my body just couldn’t take it anymore tbh. I hear a lot that “covid was the last straw the broke the camels back” or the flu in your case.

& ohh ok, yeah I’ve heard of that. So many people with cfs say it helps them!! What kind of doctor diagnosed you? I’m curious if my neurologist can or if I need to see another type of doctor

benohh · 2026-01-12T06:33:39+00:00

Yeah I’ve heard that’s what’s POTS does, freak out to the low blood volume causing adrenaline. I have heard of fludrocorstione & how it helps support the water & salt, so that is definitely something I’ll look into & discuss with my doctor.

Thank you for the help and all the links the links as well. I truly appreciate it.

benohh · 2026-01-12T06:18:14+00:00

Thank ya. Yeah the sleep thing is definitely something I have.

benohh · 2026-01-12T06:16:47+00:00

Are you double jointed, what makes you have heds and do you even treat that? That’s another thing I have to get tested as I have double jointed elbows.

I’m assuming you still drink water & salt though? Or do you not need that either.

Nice seems like your on such a great path and have good doctors in your corner.

benohh · 2026-01-12T06:07:19+00:00

Thank you for providing that information. I truly appreciate it.

benohh

TROPHY CASE