florinef

[buddysmom1]

I stared Florinef three days ago only .1mg two tabs once a day and I noticed I have more dizziness with it and at times like once or twice a day my Blood pressure goes up as high as 160/100, I find its a hard balance since I am taking Florinef I cut down on my sodium intake but I feel worse on the florienf then just the clonodine patch I wonder if I should just stop taking it I only have taken it for three days and I put in two calls to the DR> and no call back yet UGH the last time I called him it took him three days to call me back but I don't want to get angry with him he is all I have here .

[Heiferly]

It is my understanding (and of course I'm not a doctor, so this could be a MISunderstanding, so bear with me and take this with a grain of salt), that the logic here has to do with the underlying reason for the tachycardia in POTS.  We are always hearing about the tachycardia being a mechanism to pull pooling blood up from the abdominal (splanchnic) bed and legs.  Traditionally, we think of this pooling blood creating a "thoracic hypovolemia" (a deficit of blood in the upper trunk of the body) which results in low blood pressure both when you take readings from the arm, and of course, low perfusion (oxygen supply) to the brain.

So what about "H-POTS"?  H-Pots is a grouping of POTS patients that is comprised of patients who either produce too much norepinephrine or are overly sensitive to norepinephrine, either of which can cause the heart to beat too fast for it to effectively pump oxygen to the brain (see  Grubb _The_Fainting_Phenomenon_  p.57).  However, it's not quite so simple as that.  Researchers are finding that the etiology (causes) of POTS can be broken down into finer distinctions when it comes to the circulatory abnormalities (see Julian Stewart's high/normal/low "flow" classifications, as here:   http://www.nymc.edu/fhp/centers/syncope/circulatory_findings_in_pots_and_CFS.htm ) as well as myriad other factors, many of which doubtless are yet to be realized.

One thing researchers and doctors are realizing is that A SINGLE PATIENT CAN HAVE MORE THAN ONE ETIOLOGY.  This is why sometimes doctors will try treatments simultaneously that target two or more different causes/"types" of POTS.  If you want clarification, it is *never* wrong to question your doctor, but don't be surprised to hear that you have blood pooling AND excess norepinephrine ... or some other combination of two or more "different" etiologies of POTS.  If you have been able to see DINET's documentary on POTS, this subject is briefly touched upon by one of the specialists in that documentary.


Now, on the other hand, you may find that (just as with any other treatment(s)), this one in particular doesn't work for you or that you just can't tolerate the side effects.  That's okay!  Or you may find that even this dose is too much.  My GP sometimes jokes about a few of my meds that I'm taking "just a sprinkle."  Sometimes we're VERY responsive to certain meds due to our quirky little dysautonomic bodies and all we need is tiny little pediatric doses to do the job!  So play it by ear, keep in close contact with your doc, and do what feels right for you.  This is all trial and error for every one of us.  You may find you need only 1/2 a pill once a day ... or even less ... and that at some tiny dose it really helps you ... or maybe you find that you hate it and it's back to the drawing board.

I'll tell you about my experience with it next time I can tolerate typing.  For now, I've got to recuperate some more.  Thanks for your patience!!  Take care of yourself and keep us updated!!!  :-)

Heiferly.

[buddysmom1]

First I hope you are feeling better, thanks for the message, I would like to know the benifits of taking this drug as I have high blood pressure to begin with and can't imagine how this is going to help me maybe it will keep me from urinating too much, I just got the results of my blood tests and my CRP is so much better its still elevated I wonder if pots patients all have elevated CRP levels. Now what I am doing is taking .1mg but I split the pill like laura told me 1/2 in am and 1/2 in pm and I am still a little light headed and I find it is still keeping my BP  elevated prior to starting it my BP was under control at 110/70 and now it is elevated but at least its not like it was when I was on .2mg a day, I think he should have started me on the lower dose. I would like to know if it made you lightheaded and gave u high BP I do notice very slightly improvement in my heart rate but very slightly and if my BP keeps going up I don't know if its worth it. Take care and I do hope you are better

[Heiferly]

Sorry, I'm on my cell phone now so keeping this short and I'll respond again later in more detail. My docs have tried twice to get me up to the dose of fludrocortisone (florinef) you started on, and both times i couldn't tolerate it. (Let me know if you want to know what effects it had on me.) So I take just the 0.1 mg once daily in the morning, and that seems to be the "just right" fit for me. Hopefully you tolerate the lower dose better. I can explain when I have an actual keyboard why it may still make sense for POTS patients to try florinef for whom it seems counterintuitive.

Best,
Heiferly.

[buddysmom1]

The Dr finally called me back after I called again he apologized said he could not understand the number I left on his cell phone he does not use a call center??? Ok anyway he said if my BPis going too high to take 1/2 of the dose I did that for two days now and it has helped some what I dont think I need this med as I do not get low Blood pressure I only get high Blood Pressure and I also think it gives me more insomnia UGH, but I guess I will cont to try to stay on it so I can stop peeing so much and also try to bring my heart rate down also I think I really have the H pots not the other pots so I think there is different meds for this one, I will call him in a couple of days if I don't get good resutls. but thanks for this message.

[laurab2818]

I take 1/2 of my Florinef in the morning and then the other 1/2 in the evening. Splitting the dose might help but you should talk to your dr.  about what to do. I would call again and let them know that you have not received a call back and need to talk to the dr. today.

Laura