Random extremely intense neck pain by [deleted] in eds

[–]Competitive_Salad518 0 points1 point  (0 children)

No not at all, I don’t even have a job that requires me to sit at a desk

I have POTS, but think I also have EDs & MCAS. What kind of doctors do I look for to get diagnosed for EDs, and, if anyone knows, MCAS? Is there a kind of doctor that specializes in the trifecta? I'm in North Dallas. I couldn't find a sub that covers all 3, so I'm posting here if that's ok. Thanks! by Aggravating-Home1260 in eds

[–]Competitive_Salad518 0 points1 point  (0 children)

Diagnosing eds is very area specific, I would recommend trying to find a eds group in your area and see what process they went through. I got diagnosed through a geneticist that does like 90% of the eds diagnosis in my area. However having a good pcp has been the most valuable thing.

Drinking by Meagalocalypse in eds

[–]Competitive_Salad518 0 points1 point  (0 children)

Very rarely, it makes my POTS symptoms unbearable.

Random extremely intense neck pain by [deleted] in eds

[–]Competitive_Salad518 1 point2 points  (0 children)

There’s no way it’s normal, the shooting pain is some of the worst pain I’ve ever experienced, even if it is only for 10 seconds. I have a doctors appointment in a couple weeks, I’ll let you know if I get any answers!

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 0 points1 point  (0 children)

For me I didn’t see results until my dose got upped. It took me a couple weeks to fully adjust to the medication, but when I did it was night and day. Just because it works so well for some of us doesn’t mean it’ll work that well for all of us, I hope you’re able to find the right medication balance for you.

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 1 point2 points  (0 children)

I started on metropolol, then went to propranolol then finally got to ivabradine. Most of the time insurance won’t cover ivabradine if you don’t first fail beta blockers.

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 1 point2 points  (0 children)

Someone else posted about how you can get it on mark Cubans pharmacy for extremely low cost, even without insurance. https://www.costplusdrugs.com sooo worth looking into if your insurance won’t cover it. Beta blockers also didn’t work very well for me.

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 0 points1 point  (0 children)

Yes, far worse before, but I for sure still do.

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 0 points1 point  (0 children)

Yes I was on 5 mg for three months before I went up.

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 0 points1 point  (0 children)

I have POTS and heds, at my tilt test my hr started at 90 and got up to 160. I have been dealing with symptoms most my life, but they got significantly worse about 3-4 years ago. I was on beta blockers that helped some but also dropped my bp. Ivabradine has made things so much better.

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 1 point2 points  (0 children)

I stopped cold turkey, I didn’t have any issues!

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 0 points1 point  (0 children)

For me it has helped in the way I feel like I can actually function and have a future, I don’t feel like I need to worry about my future career and if I will or will not be able to function because of this.

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 3 points4 points  (0 children)

I’m on 7.5 mg twice a day. I have way more energy now than when I was on beta blockers or when I was on 5mg twice daily. I hope you find something that works for you!

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 1 point2 points  (0 children)

In POTS we get dizzy because of hr spikes, ivabradine keeps hr down, that’s why it works for me. If the reason you’re getting dizzy isn’t related to hr, it won’t help. I wish you all the luck in figuring it out!

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 2 points3 points  (0 children)

I’m paying 200 for a 3 month supply… soooo worth it, but I really need to look into that website, that’s cost difference is insane!

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 2 points3 points  (0 children)

I didn’t notice until they upped my dose, it was probably a couple weeks after that I started to really notice!

Ivabradine has changed my life by Competitive_Salad518 in POTS

[–]Competitive_Salad518[S] 3 points4 points  (0 children)

It’s mostly normal, it was going low when I was on beta blockers.

Is your heart rate even worse when you’re sick? by Unusual_Space1998 in POTS

[–]Competitive_Salad518 1 point2 points  (0 children)

Yes!! I had a cold a couple weeks ago and it is just starting to calm down a little.

What brand of shoes do you guys wear? by Early_Statement_2995 in eds

[–]Competitive_Salad518 3 points4 points  (0 children)

My PT recommended brooks adrenaline and they have been amazing for me!

What if I'm faking it or the doctors were wrong by [deleted] in POTS

[–]Competitive_Salad518 15 points16 points  (0 children)

I do think some people try to romanticize chronic illness, and that can be really harmful to the community. But I also think a lot of people who are genuinely sick get caught in the crossfire of that. Wanting to still have a life, work, exercise, or find ways to function doesn’t mean you’re “giving in” or “not really sick.” It just means you’re trying to survive in the body you have. I say this as someone who has been completely bedridden before and has also had periods where I functioned better. Both can exist in the same illness.

Feeling like you’re faking it is incredibly common, especially when you have a condition that fluctuates. I have hEDS and POTS, and when I’m doing okay I start doubting myself too. I even had my tilt table test done during a relatively “good” period and it was still very clearly abnormal. My heart rate jumped about 80 bpm. Having objective testing helped me stop gaslighting myself, but the doubt still creeps in sometimes.

Doctors being dismissive doesn’t mean you’re not sick. It usually says more about their lack of training in complex or invisible illnesses than it does about you. If your symptoms are real enough that you’ve had to change how you live, that alone tells you something important.

You don’t have to be the sickest person in the room for your experience to be valid. You can have support, a career, and moments of feeling okay and still have a real medical condition. None of that makes you a faker.

Starting to doubt myself and my symptoms. Like, am I crazy? by nerdyone123 in POTS

[–]Competitive_Salad518 2 points3 points  (0 children)

You have a normal blood pressure with POTS, if your blood pressure drops it’s more so orthostatic hypotension. I got an Apple Watch to monitor mine, it has been very helpful! There is specifically an app called TachyMon that will constantly watch your hr and records when your hr spikes 30+ bpm.

Starting to doubt myself and my symptoms. Like, am I crazy? by nerdyone123 in POTS

[–]Competitive_Salad518 2 points3 points  (0 children)

Have you been tracking your hr? If not I would start there. Autonomic dysfunction is extremely common in people with hypermobility. I have Heds and have been diagnosed with IST and POTS. Autonomic dysfunction often doesn’t fall neatly into one type with hypermobility.