Question about POTs and Florinef

[littlebird6180]

I have sinus tachycardia/POTs with a loop recorder implanted. I've been on atenolol for almost a year which helped but my doctor recently added florinef and salt pills (he was holding off so he could gather as much data on the recorder as possible).

He initially started me on florinef twice a day with 3 grams of salt but told me most of his patients take it 4x a day and that I could increase to that. Anyway, I have a terrible time staying on top of my medication and supplement schedule. It's around 20-30 pills per day and I often forget something (usually only supplements, rarely prescriptions). I think because the doctor gave me a choice, I played around a bit with the florinef and started out taking 3 pills a day but some days it was 1x a day and others 4x a day. I felt great. Almost like I'd been cured. Had about a week where I felt normal (or what I imagine normal to be).

Then we hosted a small halloween party and since then, I've been feeling horrible (4 days ago). Extremely tired, muscle aches, struggling to get through the day. Florinef isn't making a difference and neither is salt. I'm wondering if this could be a result of how inconsistent I was with the florinef? I'm not looking to be scolded - I definitely learned my lesson and am going to set reminder alerts to take it consistently. Still not sure whether I'll take twice or more per day.

I guess I'm just wondering is how important is it to be consistent and exact with your florinef schedule and can deviating cause problems?

 

[Denise]

I have sinus tachycardia/POTs with a loop recorder implanted. I've been on atenolol for almost a year which helped but my doctor recently added florinef and salt pills (he was holding off so he could gather as much data on the recorder as possible).

He initially started me on florinef twice a day with 3 grams of salt but told me most of his patients take it 4x a day and that I could increase to that. Anyway, I have a terrible time staying on top of my medication and supplement schedule. It's around 20-30 pills per day and I often forget something (usually only supplements, rarely prescriptions). I think because the doctor gave me a choice, I played around a bit with the florinef and started out taking 3 pills a day but some days it was 1x a day and others 4x a day. I felt great. Almost like I'd been cured. Had about a week where I felt normal (or what I imagine normal to be).

Then we hosted a small halloween party and since then, I've been feeling horrible (4 days ago). Extremely tired, muscle aches, struggling to get through the day. Florinef isn't making a difference and neither is salt. I'm wondering if this could be a result of how inconsistent I was with the florinef? I'm not looking to be scolded - I definitely learned my lesson and am going to set reminder alerts to take it consistently. Still not sure whether I'll take twice or more per day.

I guess I'm just wondering is how important is it to be consistent and exact with your florinef schedule and can deviating cause problems?

I don't know your age but some clinicians think that florinef is more helpful for pediatric/teen patients than for adults.
And for some people the benefits of florinef wear off after being on it for a while.
I have no idea if any of this applies to you....

You might want to read this OI summary by Dr. Rowe. It might have useful info for you.

 

[Alisha12]

Generally florinef is prescribed in the morning for POTS and only sometimes in the evening as it may cause insomnia.Never heard 4 times daily..Btw what is the dosage?