Thank you for sharing - and for mentioning an air purifier! So many people skip that step!
I wanted to ask if you noticed a significant decrease in heart rate with the CCB? That’s the one drug I’ve not tried yet - because I have tachy/brady POTS and persistent hypotension so I can’t take anything that lowers heart rate or blood pressure. Super fun having pots and not being able to take a beta blocker or fludro. Sigh.
Interestingly cromolyn sodium actually is a MILD calcium channel blocker - but you have to take it virtually perfectly to get the effect. I’m quite careful about how I take mine (always 90 min away from food and meds and always dissolved in hot water) and it does make me brady.
I'm taking the lowest dose of diltiazem - 120mg and it hasn't affected my heart rate dramatically. It's still regularly above 115bpm when I stand. I haven't been checking my blood pressure as consistently since I've been taking it, but when I do check it, it's more likely to be in the normal range, or high after walking. Prior to the diltiazem I had more issues with orthostatic hypertension though, not hypotension and I haven't had bradycardia (as far as I know).
Once I started taking it, I was able to be upright for longer without feeling sick/nausea/fatigued/getting PEM. I haven't had an episode of hives either. I tried increasing to 180mg, but didn't experience any difference in symptoms or side effects after 3 months, so I'm back to 120mg.
My resting/lying down heart rate has stabilized around 58bpm. It was in the 70s before the diltiazem, so I guess that is significant.
Hopefully that information is helpful. It's so frustrating when medications don't work or make us worse - I wish I could wave a wand for all of us and fix the underlying issues.
And yes to air purifiers! They help so much! I can't imagine living without them. Now if only we could get literally every building equipped with them.
Thanks Kate! It is helpful - but I’m starting from such a low baseline they probably won’t let me try it (resting hard rate low 30s when I’m brady and BP hasn’t been above 70/40 in over a year). There’s something more than POTS going on with me - but they’re still trying to sort it out.
That is a tough starting point 💝 I'll keep my fingers crossed that your team figures it out eventually and that you receive support and compassion regardless.
Thank you! It didn’t used to be this bad - I was pretty classic POTS when first diagnosed. Over the years things have worsened unfortunately - as often happens.
Thank you for sharing - and for mentioning an air purifier! So many people skip that step!
I wanted to ask if you noticed a significant decrease in heart rate with the CCB? That’s the one drug I’ve not tried yet - because I have tachy/brady POTS and persistent hypotension so I can’t take anything that lowers heart rate or blood pressure. Super fun having pots and not being able to take a beta blocker or fludro. Sigh.
Interestingly cromolyn sodium actually is a MILD calcium channel blocker - but you have to take it virtually perfectly to get the effect. I’m quite careful about how I take mine (always 90 min away from food and meds and always dissolved in hot water) and it does make me brady.
I'm taking the lowest dose of diltiazem - 120mg and it hasn't affected my heart rate dramatically. It's still regularly above 115bpm when I stand. I haven't been checking my blood pressure as consistently since I've been taking it, but when I do check it, it's more likely to be in the normal range, or high after walking. Prior to the diltiazem I had more issues with orthostatic hypertension though, not hypotension and I haven't had bradycardia (as far as I know).
Once I started taking it, I was able to be upright for longer without feeling sick/nausea/fatigued/getting PEM. I haven't had an episode of hives either. I tried increasing to 180mg, but didn't experience any difference in symptoms or side effects after 3 months, so I'm back to 120mg.
My resting/lying down heart rate has stabilized around 58bpm. It was in the 70s before the diltiazem, so I guess that is significant.
Hopefully that information is helpful. It's so frustrating when medications don't work or make us worse - I wish I could wave a wand for all of us and fix the underlying issues.
And yes to air purifiers! They help so much! I can't imagine living without them. Now if only we could get literally every building equipped with them.
Thanks Kate! It is helpful - but I’m starting from such a low baseline they probably won’t let me try it (resting hard rate low 30s when I’m brady and BP hasn’t been above 70/40 in over a year). There’s something more than POTS going on with me - but they’re still trying to sort it out.
That is a tough starting point 💝 I'll keep my fingers crossed that your team figures it out eventually and that you receive support and compassion regardless.
Thank you! It didn’t used to be this bad - I was pretty classic POTS when first diagnosed. Over the years things have worsened unfortunately - as often happens.
You’re in Ontario too?
If I stumble across research that might be relevant for you would you want me to message you with it?
I am in Ontario - the west end of the GTA. I was in Toronto until my ex broke up with me last year, so I'm back with my parents.
Hey I’m right in the Toronto core! We’re not that far apart. I’m sorry to hear about your relationship - was it because you’re sick?
And absolutely - feel free to message anytime.