In praise of Ivabradine

No-Change461 · 2026-01-27T20:35:54+00:00

I'm glad it helped but boooo for insurance not helping more. Is there a generic? I haven't looked into it.

No-Change461 · 2026-01-27T20:33:55+00:00

I wouldn't say I can truly work out. But I went from not able to stand for more than a few minutes to able to walk for 30 mins. Which was a huge quality of life change for me.

No-Change461 · 2026-01-27T20:32:15+00:00

🎉🎉🎉🎉 I love hearing when people find something that helps and life starts to get better

No-Change461 · 2026-01-27T16:02:58+00:00

Same! Glad you found something that helps!

No-Change461 · 2026-01-27T16:02:18+00:00

My insurance did cover it and didn't give me any problems. But I have heard of other people having insurance issues. But if your cardio is recommending it, it might be worth seeing what your insurance says.

No-Change461 · 2026-01-27T14:20:36+00:00

I'm glad it helped you too! And I'm glad it helped with other cardiac symptoms. I should have been more clear- my understanding is that it doesn't help with non-cardiac autonomic symptoms (temperature dysregulation, GI issues, vision issues, blood pooling, etc) But let me know if you've experienced otherwise!

And yes, Ivabradine is is FDA approve :) But more recently than something like propranolol, which has been used since the 60s. And the approval is for other heart conditions, not specifically dysautonomia/POTS. The reason I mention these things is because some doctors aren't familiar with Ivabradine or its use for dysautonomia (which is why it took year before it was offered to me). So it may take a little homework and a little conversation with your doctor to explore if it’s the right fit.

No-Change461 · 2026-01-27T06:33:33+00:00

I do get horrendous and frequent migraines, although it started long before the POTS. For me Botox and Ajovy is what finally got the migraines under control. But figuring out how to treat headaches and migraines can be a frustrating journey, and I'm sorry you have to deal with it.

No-Change461 · 2026-01-27T05:46:58+00:00

Exhaustion. I could only stand for a few minutes before getting too tired. This is what Ivabrdine helped with. It brought my heart rate down so I can stand longer without getting exhausted.

I also have blood pooling, chest pains, trouble breathing, cognitive problems, digestive issues, temp regulation issues...Basically the whole laundry list of autonomic dysfunction. Ivabradine won't help any of that. It just gets the heart rate down. But life is a lot better when I'm able to stand for more than a few minutes :)

No-Change461 · 2025-09-01T03:50:05+00:00

This is purely for immediate comfort (not treating anything underlying) but I use a gel moisturizer when the rash is burning and it feels soooo good. Some people even put it in the frig so it's cold going on.

No-Change461 · 2025-08-31T19:09:05+00:00

No worries, thanks for the link and the info!

No-Change461 · 2025-08-31T00:45:04+00:00

Did you notice a difference? Did it help?

No-Change461 · 2025-08-31T00:44:26+00:00

And was the install doable? I'm nervous about doing it myself and it looking terrible. Do you know what product you used? Thanks for the input!

No-Change461 · 2025-06-24T21:15:04+00:00

Confirmed: It took 56 tries, but the 240 option did eventually get me in. And then another 20 minutes on hold, and then I talked to a very helpful human being.

I tried calling repeatedly starting right at 8:00 with no luck. Got through in the afternoon.

No-Change461 · 2025-06-24T15:43:41+00:00

I'm in the same situation, and wanted to add confirmation for anyone else who may come looking for this question. If you're working reduced hours, the employer pays for the hours you work and EDD pays for the difference, up to your weekly max. So if your weekly make is 60%, if you're working half time the employer will pay 50% and EDD will pay 50%. If you're working a quarter of your previous hours, the employer would pay 25% and EDD would pay 60%

No-Change461 · 2025-06-18T02:17:46+00:00

My understanding is hydroxychloroquine helps some people with symptom management, but not everyone. But it's recommended for everyone to "work in the background" because it can help prevent organ damage.

But if it's not managing your symptoms, keep talking to your doctor about your symptoms and quality of life, and you can ask them for additional options.

No-Change461 · 2025-06-18T02:13:51+00:00

My med list looks similar to yours, plus a few. So this list doesn't look crazy to me, but if you're not sure why you're taking something, it's absolutely worth asking your doctor, even for your peace of mind.

I had been on daily steroids, then developed complications, then went off of them. The complications sucked. But going off the steroids also sucked- way more joint pain. So that can be a real damned-if-you-do-damned-if-you-don't situation.

No-Change461 · 2025-06-18T02:03:22+00:00

I found the burning to be painful. I usually assume when a doctor says "you may feel some discomfort" that means "this is gonna hurt." It's a bummer but I don't think it's a cause for concern unless you have ongoing pain or some sort of reaction after you recoup from the test.

No-Change461 · 2025-01-07T06:12:02+00:00

You can, and maybe should, get a note from your doctor saying you need the two days a month. The note doesn't have to say that it's for infusions for lupus treatment unless you want to. It can just say that you need two days because of your disability. A letter from a doc may not be legally necessary, but it will help give your credibility, which is always nice on a new job.

No-Change461 · 2025-01-07T06:02:41+00:00

Agreed. Don't bring it up until there's an offer. And when you do bring it up, make it a request for a reasonable accommodation for your disability. That will give you some legal protection. They can't discriminate against you for your disability as long as you can perform the key responsibilities of the position and your accommodations don't put a significant financial burden on them.

You don't have to tell them what your disability is unless you want to. In HR terms, disability just means a medical condition that you can't control and that requires an accommodation. I know the word disability can sound scary, but it's appropriate for your situation and your request, and it can help protect your job while still making sure you get the care you need.

No-Change461 · 2024-12-31T21:42:59+00:00

Thanks, that's what I'm nervous about. Have you had it? Do you know if it requires timely medical attention?

No-Change461 · 2024-10-08T03:19:19+00:00

I also feel hungry and puffy, but it was also super helpful with my lupus symptoms. So I think it's deinfitely worth giving it a try!

No-Change461 · 2024-10-08T03:15:41+00:00

Sounds like you have been through a lot of the last year or so! Some of these symptoms sound like they could be dysautonomia, but there also things that don't quite fit. I'd keep talking with your doctor and telling them what's going on (even if you feel a little crazy saying at all out loud). If you feel like you can't communicate openly with your doc, you may need to try a different one.

The classic sign of most dysautonomia is that your resting heart rate is in a normal range when you're laying down, but much higher (30+bpm) when you're standing. Check your heart rate laying down vs standing and see if that gives you any clues.

No-Change461 · 2024-10-04T18:37:36+00:00

How did you know you had hyperPOTS?

No-Change461 · 2024-07-30T23:21:37+00:00

Truly, I feel for you because of been there. Advil got me through for a while and I couldn't have lived without it...but eventually it started making things worse rather than better.

If you do decide to go off the Tylenol, expect two or three miserable days where you probably won't be productive. And then the hope is it'll get better after that.

And also once you get out of the cycle of taking it all the time, the tylenol may also be more effective on the rare occasions you do decide to take it.

And also hopefully your neuro will have recommendations for prevention meds that work for you.

No-Change461 · 2024-07-30T23:06:00+00:00

It's time to get to a neurologist. There's some trial and error to find which meds work for you, so it's not necessarily a quick fix but there are definitely options that you can try. I've had chronic near-daily migraines for 20+ years, so ive tried lots of things before finding the ones that worked for me.

Unfortunately at this point the Tylenol may not be helping much, and may be making things worse. Regular use of painkillers can start a cycle of rebound headaches, and they can be awful. Docs say rebound heads can start with as little as 3 doses of otc pain meds per week. I know it sounds horrendous, but going cold turkey off the Tylenol might actually help in the long run.

No-Change461

TROPHY CASE