Wanderland

Recently prescribed Corlanor 5mg, twice daily by my cardiologist. At first my insurance denied coverage, but my cardiologist did an appeal and I MIGHT get to start taking the medication this week! My friend is a pharmacist, warned me about this medication's warning that pregnancy should be avoided and birth control should be used while on this medication. My husband and I are not considering pregnancy for at least another year. Can anyone share their overall experience with this medication? Side effects, warnings, positive benefits???? Was anyone else given a warning about pregnancy by a pharmacist or doctor? Any information and experiences are helpful! This is my first time on this type of medication so I'm keeping my fingers crossed that this will be worth it!

You're all so very right. I know quite a few people with POTS and finding a specialist is always a challenge so I figured it might be even more challenging if I was trying to find something different from POTS

I might look into that depending on what comes out of my remaining testing. My neurologist referred me to one but it was peak 2020 time in Chicago so the wait time was so long to even try to talk to someone about scheduling an appointment so I lost motivation. Is it something worth pursuing even if I don't meet criteria specifically for POTS?

Who do you typically see as a Dysautonomic specialist? I've had 3 cardiologists, endocrinologist, allergist, sleep specialist, natural medicine doctor, dermatologist, neurologist, and my primary general doctor. So I'm just going off of the information they've told me.

Finishing up my testing and here are my "best guess" conclusions based on my historical testing and most recent testing: Orthostatic Intolerance, General Dysautonomia, Restless Leg Syndrome, low Ferritin/Iron. My question is: is it worth asking about medication for the orthostatic intolerance or better to go without? I am usually sensitive to side effects of medication and any steroid medication I get the moon face and immediate weight gain of like 10 pounds in a week. I have a long history with water retention to managing my weight has been a challenge over the last 8 years. Just trying to get an idea of what questions to ask my cardiologist if medications come into question or if I'm better off not taking medication and just making the same lifestyle adjustments I've been doing already. I appreciate anyone's experience in asking "good" questions about medication or any helpful warnings about side effects, especially weight gain.

Got it. So overall it really won't matter what my heart rate is doing. I do have an arrhythmia, but that is such a rare thing. I wonder why it even gets used for a potential POTS diagnosis if the bpm isnt enough to be flagged? Makes me wonder what my cardiologist hopes to get out of it. 7 years ago I did the treadmill stress test and momentarily blacked out but my heart rate was "normal" so that cardiologist said "it must be because you got overheated that you blacked out". 6 years ago I did a tilt table test and blacked out around minute 16 but my heart rate didn't do what was considered typical for a POTS patient so cardiologist #2 said "you have orthostatic intolerance". Now I'm on to cardiologist #3 and I'm doing the treadmill stress test again plus the 2 week heart monitor. I wouldn't be surprised if I end up being in the same "general dysautonomia" and "orthostatic intolerance" category again if nothing really is noted on a 2 week heart monitor. My heart rate doesn't usually get above 145 before it drops to 35 bpm. It's happens quickly for me, but usually if I stop whatever I'm doing and rest for a couple of minutes it goes back into a normal range. So I know I'm not as severe as what some people may experience, but now I question on how the heart monitor is helpful from a data perspective.

Hello! I get to start wearing my Zio monitor for the next 2 weeks, starting tomorrow! I'm trying to think of the most respectful way of saying this...but can anyone with prior heart monitor experience help me understand what would show up as "significant" on the results? I'm not trying to game the system! While I've been waiting for this appointment to come around I've realized how much in my life I've already adapted over the last 7 years of symptoms to reduce the likelihood that my heart rate will rise and fall. This would include things like modifying exercises, resting after standing for long periods like taking a shower, taking an hour to adjust to being awake before jumping out of bed in the morning. My new cardiologist automatically said I fit into some dysautonomia category, and I'm previously diagnosed with orthostatic intolerance. We just need to see what my heart rate is actually doing. I'm just worried that if I do my "normal", this heart monitor isn't going to show anything as being significant, or what feels relatively significant for me is not significant enough for a heart monitor. I want to give my cardiologist an authentic picture of what I feel my heart rate is doing. If I don't meet criteria for POTS, that's fine! I just have the concern that I'll come across as complaining that my heart rate rises and falls, especially during exercise, and then my doctor will say "Nope! That's normal on your heart monitor, you're fine!"

Hi! I'm new to this (but slightly not) and I just need help with having a better way to advocate with my doctors. History: 7 years ago I started retaining water/gaining weight, but I also didn't know that I had a heart arrhythmia at the time. Saw two cardiologists and did a stress test (and blacked out) and a tilt table test (and blacked out), but my heart rate didn't do what the doctors considered "classic POTS tachycardia" so I was diagnosed with orthostatic intolerance and that I probably got overheated due to my anhidrosis. I was put on a medication to manage my water retention. Flash forward to now, my weight is so hard to keep consistent. I still have water retention issues. But this year, I've been tired....like I could fall asleep at work if I let myself, tired. Symptoms: lethargic, light sleeper, never feel rested after sleep, exercise intolerance (even though I've worked out 4 times a week in a studio since 2018) because my heart rate spikes to around 140 and then it'll drop below 60, struggling with maintaining my weight, water retention, brain fog, difficulties with memory recall, difficulty learning new information, poor balance, difficulty regulating and adjusting to temperature changes. My face shape/jawline can get more round and puffy but it could be water retention? .....oh, and sometime this year I developed a hump on the back of my neck. My blood work is "normal", but probably not optimal. Endocrinologist: I have 2 nodules on my thyroid, but those are benign, so no thyroid medication because my TSH, T3, and T4 are "normal". Allergist: I have a mild dust allergy, but nothing else. Dermatologist thought I had an internal inflammatory condition like CIRS. Natural Medicine doctor tried to put me on 7 daily supplements and dietary restrictions saying that my blood work and a diagnosis didn't matter. I'm going to have a sleep study consult because I have restless legs at night and I've become more and more of a light sleeper, even if I try to get 9 hours of sleep and I take an OTC sleep aid nightly. My new cardiologist is going to have me do a stress test again and a 2 week heart monitor to determine if I now meet criteria for POTS or still in a general dysautonomia category. I'm so worried that I'm doing all of this and I'm going to get the same answer I got 7 years ago: general dysautonomia with a medication for water retention. I am mildly worried about Cushings because of the hump on my back, but I don't have the blood work to back that up and my grandmother also had a hump. How can I advocate with my doctors when my blood work is normal and I just may not be "sick enough" for medication or additional testing? I've already had doctors tell me that it could be anxiety or somatic, but after 7 years, I know that isn't true. Any helpful suggestions to advocate without coming across like I WANT TO BE SICK?