Current or Former Patients of Blair Grubb?

[Jyoti]

@Judee--my blood pressure seems to hang out in the low normal most of the time and hasn't been effected one way or another by the Mestinon that I can see. But as mentioned, I do only take a small dose---I think the recommended amount is 180 mg/day. I take 45 and while I have attempted to titrate up a bit several times --just to 60 mgs--I am not able to tolerate more than 45. In fact, as I recall, both my bp and resting hr drop too low for my comfort at higher dosages.

I have not had success with beta blockers at all. Mestinon is, as you know, an acetylcholinesterase inhibitor, and for whatever reason, that seems to work for me. Honestly I am not sure that it lowers my heart rate (though I would say that since I have been on it--about a year--my standing heart rate has been less extreme), but it gives me muscular energy, which helps a ton with exercise and is in itself a bit of a joy.

@Nord Wolf --what ho on the Ivabradine? Have you gotten it? Tried it?

 

[Nord Wolf]

what ho on the Ivabradine? Have you gotten it? Tried it?

Not yet. Insurance denied it and said if my doctor could provide proof that the drug is used to treat a condition I have, they would approve it. My doctor appealed with medical documentation that Ivabridine is in-fact used to treat PoTS. We await news back from the insurance company.
Meanwhile, I made an account with the Canadian pharmacy you supplied info on. My doc sent me a prescription for Ivabridine, which I then sent to the Canadian pharmacy. But they won't even process the order until this Friday, and then it can take between 8 and 18 days for me to receive it by mail.

Meanwhile, I've been struggling horribly with my conditions and symptoms. They have gotten so bad that even here in spring with tons of sunshine I am mostly bed or cough ridden and feel horrible every day. UGH, I'm starting to space out here so need to get going back to cloud 9 land...

 

[Jyoti]

I hope you get your hands on the Ivabradine sooner rather than later. It is so infuriating that--as sick as you are--you have to jump through these ridiculous hoops. The Canadian route should work once it is set up, but I am so sorry you are having to wait so long for something we all really hope will help.

 

[Nord Wolf]

Still waiting to hear back from insurance on the appeal. They are taking their good olde fricking time about it. Meanwhile, the Ivabridine shipped last Thursday, a week after placing the order with the Canadian pharmacy. Of course, it shipped from ……… Turkey! Therefore it has no tracking, and supposedly will take up to 18 days to get here.

These damn hoops just never end.

 

[Jyoti]

i am so sorry this has been the ordeal on top of the ordeal on top of the ordeals! I surely hope the damn drug arrives ahead of time, since it is already way too late.

 

[Judee]

@Nord Wolf, did you ever get the Ivabradine? And is it helping at all?

I noticed tonight that Goldpharma.com has it as well just in case you're still waiting although I've only ordered once from them (not Ivabradine though) and I don't remember the ship times.

 

[Nord Wolf]

did you ever get the Ivabradine? And is it helping at all?

I did finally receive the Ivabradine and started taking 5 mg on June 18th. However, I so far have not noticed anything from it. No lowered heart rate, nothing. I’ve no idea how long I should wait to see any sort of results. It has been 19 days and I thought I would have notice something by now.

 

[Judee]

It has been 19 days and I thought I would have notice something by now.

I would think so too for this type of medication. Maybe talk to your doctor. I noticed you said you have high pulse and high bp. I think @Learner1 called that hyperadrenergic POTS. Is that what your doctor called your version? Maybe she's found something useful for both issues. ??

 

[lenora]

Maybe I'm wrong, but I do believe that BP goes from low to high as we age, especially in the menopausal years. As a matter of fact, most people who grow older have higher BP. Age, I guess. Yours, Lenora

 

[Nord Wolf]

Yes, the type of PoTS my system most aligns with is hyperadrenergic. I’m pretty sure it is the only kind of the 4 recognized types where blood pressure elevates drastically rather than drops.

The issue I think with the Ivabradine is that it only works on tachycardia, not blood pressure. It does nothing for people with anxiety either. For tachycardia with acute elevation of blood pressure, and if anxiety is at play as well, the beta-blockers I’m told work better than Ivabradine. My feeling is that Ivabradine would work well if the only issue was tachycardia. But when acute BP elevation is also present, perhaps the BP and HTR work together in ways that counteract a straightforward tachycardia medication like Ivabradine.

I plan to finish the box that I have and then stop. That would be a full month. I’ll be interested to see if I notice any changes in the week after ceasing. I doubt it since I’ve not noticed anything from taking it so far.

My doc isn’t sure it is worth continuing either since it seems to have done nothing yet. I have a consult with him on the 21st, so we can discuss further avenues.

PS
I did this with dictation... getting better at it. (update a week ago)