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Whats The Point Of Taking Florinef If....


~Naomi~
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Just a quick question because Dr's keep telling me to try Florinef. I had a blood volume test (through nuclear medicine dept.) and it showed my blood volume was perfectly normal. Would the salt, water, Florinef regimine make any sense in my case? Isn't the point of this to boost blood volume, because low blood volume is supposedly what is causing the POTS symptoms? So if mine is normal, this doesn't apply right?

Thanks,

Naomi

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I think the reasoning behind that is when you stand and your heart begins to race, it is compensating for a drop in blood pressure or trying to prevent a drop in blood pressure. With an increased blood volume, even if the blood volume is normal to begin with, it will help keep more blood in the upper half of the body upon standing, thus making it easier on your heart (meaning it will not have to pump so hard and fast to get blood up to your brain). That's how I understand it, anyway. Hope that helps. :(

Sarah

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It probably still has a good chance of helping by over-hydrating... especially if you are the Orthostatic Hypotension type (BP falls upon standing).

I've even read that fludrocortisone does more than just the salt/water retention trick (mimicking aldosterone)... one article I read mentioned that it helps also by potentiating vasoconstrictive response (although volume increase is certainly it's main deal). At typical dose it's a mild glucocorticoid (but not reaching adrenal suppression levels until .4mg/400mcg).

Also, most measurements (other than clever stuff like HgA1c) are just a snapshot so despite being a contradiction one can choose to look at the larger "clinical picture" rather than a single measure. The notion of "normal blood volume" is just a statistical thing across a population... if that "normal level" isn't cutting it for you it doesn't matter much that you happen to fall near a statistical mean! What matters is what it takes for your body to function better.

One last note, despite the fact that a doc can & should try to inform a decision as best they can with real facts and sound theories... people still don't fully know what is going on in the body to cause these problems and treatment is still basically just semi-informed "trial & error" and used to address symptoms rather than discernible underlying causes.

If you have been authoritatively found to be Hyperadrenergic-POTS (and you have confidence in that classification to begin with)... there might be argument for not trying Florinef or not trying it first since it's reported to be less helpful in that situation... but generally it's one of the first things tried and also one of the more "conventional" and known entities out there. And I believe it's officially "approved" for OH/OI, so a doc has easy time explaining a scrip for it if you've got that indication before reaching to "off label" medicines.

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My BP doesn't fall when I stand.

Erik you said "If you have been authoritatively found to be Hyperadrenergic-POTS (and you have confidence in that classification to begin with)... there might be argument for not trying Florinef or not trying it first since it's reported to be less helpful in that situation..."

I think I have hyperadrenergic POTS. I had my norepinephrine levels tested laying and standing and the standing levels were very high -- which I think is how they determine the hyperadrenergic type... of course since I don't have a good Dr. working on this, I can't say for sure. Why would Florinef not work with this type? Do you know what WOULD work with this type of POTS?

(still in disbelief I do not have a Dr. to have this conversation with)

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The two articles I've read that go into it a little might clarify (and correct, if necessary) that point. Here's a blurb from a Grubb article in '08 that singles out the sub-type... though of course getting a hold of an expert doc is the way to go:

In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects.9,10 One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined {alpha} and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed {alpha} receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients.

It is sometimes challenging to be able to differentiate between POTS and inappropriate sinus tachycardia (IST) because hyperadrenergic POTS and IST share several characteristics.

And here's one by Raj that mentions "Central Hyperadrenergic POTS" amongst many other insightful things:

Central hyperadrenergic POTS in its most florid form is much less common than neuropathic POTS, comprising only ~10% of patients. Thus therapy in these cases usually targets a decrease in sympathetic tone both centrally and peripherally.

Central sympatholytics such as methyldopa or clonidine can be used. Peripheral beta-adrenergic blockade may be better tolerated by these patients than by those with neuropathic POTS.

These two guys are a couple of the top dogs, especially with research but their teams also do good treatment AFAIK... of course Mayo Minnesooata (don't ya know) is top notch (and didn't they coin the latest term POTS???).

I really don't know the "probability" of each treatment working based on a likely suspected sub-type of POTS. In a way, it can be better to acknowledge that one doesn't truly know the underlying pathology and just try different meds. However, as you note from reading those articles there can be extra emphasis placed on tamping down the adrenergic system with hyper-adrenergic form... whereas something like Clonodine might make me more Hypotensive & faint (which is what happens to me when I stand) and I would probably be helped with Midodrine to actually activate the adrenergic system (it is an adrenergic alpha-agonist)!

Realistically, given delays and realities of getting treatment for POTS it might not be bad to give fludro a trial run even if it is looking like you are hyper-adrenergic... if that is where the doc is at so far in the process. It seems the one rule to this game is that every patient varies and meds can both bite and surprise you positively with their effect.

Since my BP usually falls out on me with prolonged standing, I am assuming I am personally the non-hyper-adrenergic sort. However, I have had periods when my BP has held or gone up slightly (sometimes when on meds but sometimes even when not) so I'm wondering if a person can be a sub-type drifter of sorts too :)

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HI,

I was officially diagnosed yesterday. My heart rate went from 106 to 140 bpm on the TT. My blood pressure drops slightly, but then comes up again. So I don't faint. They tried to make me faint on the TT, but I didn't just felt so uncomfortable there for those 30 min. Anyways i was prescribed florinef 0.1mg in the addition to my beta blockers. I am starting it today and see how that goes. I live in Ireland no Mayo clinic here and I doubt I will find any good specialists with real POTS experience. After my diagnosis the doctor tried to give me hope saying that it is totally treatable and that this is just a phase in my life. I thought about all the ppl on this forum who have been sick for a very long time, who have good specialists working with them, but still can't manage a normal life.

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CMA, my cardio told me something similar. After diagnosing me with POTS, he said that after I get on a beta blocker and it is regulated properly, all the symptoms will go away and I will feel normal again. I've been on a beta blocker since last May. Hasn't helped. When will the normal begin?????

Caron

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I see. If you have low BP overall then fludrocortisone is a likely candidate to help you.

I have normal BP typically (unmedicated) and fludro is useful to raise me to low hyptertensive range (140+) or more recently I had bouts of steady 160 and even some 190's. I feel so much better overall with a high BP. This might be the case for you too.

I would like to try a beta-blocker myself, but have frequent bradycardia and they tend to slow HR even more, so it's not an easy option (perhaps I could try mini dose). Also, if my BP is high from the fludro (which does help me)... then it is touchy for me to use drugs that give potentially helpful "pressor" effect, like midodrine or stimulants. It seems quite common for potentially helpful meds to be blocked out by other aspects. In fact, several of the common meds used have known and even expected characteristics that can/will exacerbate things while they also help things. There are few or none "on the list" that are free of this... no easy fix.

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I didn't read the other responses, but it doesn't matter if you have normal blood volume or that your BP doesn't fall when you stand. In POTS your heart is beating fast to keep up your BP. If your BP is increased through another means, then it takes the burden off your heart and your heartbeat slows down. That is the theory. Midodrine also works on the same theory, but increases BP withough increasing blood volume. You may want to start off with beta blockers if HR is your biggest problem.

Since the mechanisms of POTS aren't fully understood, most people have to try diferent meds to find the right one(s). You can pick certain meds (and rule others out) based upon your symptoms, but in the end it's trial and error. The thing that helped me the most is Paxil, but I didn't find that until 3 years after getting POTS, after trying 2 betas, florinef and midodrine.

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"Does anyone know of publications describing a relationship between..."

I don't know any that give a real distinct breakdown amongst those things. Here is a Grubb article that at least mentions EDS under the Secondary POTS section. You will notice it's otherwise quite similar to the background info in that prior Grubb reference:

http://knol.google.com/k/blair/postural-ta...0Lsji-N/oPFBfQ#

I recall reading that 30% of POTS patients also test positive for NCS. I may be able to confirm & find a reference to this if it is useful. I don't remember if there was much in the way of distilling that out. Also, I recall reading that only a minority of POTS folks actually faint (fully), which seems consistent with that 30% figure.

I tend to get confused by OI vs. POTS since it is sometimes considered same... or one account lists OI as a prior name or understanding of POTS (historically), etc. Vanderbilts description certainly associates them!

There is also the notion of considering OH (Orthostatic Hypotension) as a separate entity and assuming that tachycardia is simply an otherwise healthy response to the unhealthy drop in BP... a compensatory response... perhaps even in some cases where BP doesn't drop, meaning the compensation is working. Although I have O.H., my personal experience has been that when my BP is super high and holds upon going upright (like when I'm on fludro+salt), I will be less symptomatic, feel better overall, but still get the drastic heart rate increase (so I'm skeptical that the HR is only a BP compensation for me).

The prior mention of fludro having multiple effects came from the PDF on "OI & Treatment" linked at this page (the quote below has the link to the PDF embedded):

http://www.cfsnova.com/resources.html#orthointol

Orthostatic Intolerance and its Treatment Chronic Fatigue Clinic, Johns Hopkins

In there they say at the bottom of their med list:

Some of the above medications no doubt work in more than one way. For example,

fludrocortisone improves the ability of the blood vessel to constrict in addition to expanding

blood volume. Your health care provider should work with you to determine the best possible

combination for your personal situation.

That article kind of makes it sound like POTS is best pictured as a subset of OI, by my read.

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I tried Midodrine once and it made my heart MORE racy. Is that an odd response? And when I tried Fludrocortisone, I got a strange feeling in my chest, almost a shortness of breath, but not quite. And Mestinon was just plain weird.. after taking that I was looking at the TV screen and couldn't understand what the people on the TV were saying. It was scary. I just don't understand what I am supposed to take. It seems like everything I have tried makes something else worse, yet I can't live like THIS. I have also had so many bad reactions that I am SCARED of medication now. I just don't understand how they can treat a person if they don't really know where the problem is coming from. You could end up taking something that is going to work against you. I feel very whiny lately... and I don't mean to be, I am just so frustrated.

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It certainly is a stupid situation, with all the advances in medicine the best that usually can be done to date is informed guesswork and trial & error use of potentially touchy drugs. Certainly worth complaining about, whining or not. Its lousy and hopefully our prospects will improve sooner than later.

I've been lucky with meds so far (mostly 'cause I haven't had opportunity to try too many yet :) but did have some weirdness early on with fludro... and then later when I pushed the dose up a bit. My trouble was mostly headache & moodiness for several days... which I managed to endure... then later feeling bloated enough that it felt "unnatural" and concerned me (like something was going to burst :). I can especially understand discomfort with heart feelings... they are unsettling, to say the least. I wouldn't know if that was a serious indicator or something benign that might pass... certainly worrisome.

Some folks benefit by ramping up the dose really slowly and letting the body get used to it more slowly. I figure one might go light on the salt while introducing fludro, since they work together... so one is getting used to the added hormone before otherwise "activating" it with salt (but that might be a silly theory on my part). There are the similar to fludro alternatives... I am able to get my BP up a bit from just heavy salt intake. Some use salt pills. Licorice root is said to be very similar to fludro in its effect. The compression hose can help folks, sometimes a lot.

I know I was prescribed fludrocortisone without concern of existing aldosterone level... just to boost whatever is there. I'm not sure about other folks or if your doc has a solid point or not. Near as I can tell, in the context of POTS or similar (as opposed to treating Addison's or related illness) one isn't "hormone replacing" but is intentionally augmenting that effect (telling kidneys to retain salt, and hence more water during the internal kidney re-absorption process). I believe in US fludro is "authorized" for orthostatic hypotension and orthostatic intolerance amongst other things... so a doc doesn't have to stretch themselves "off label" if you've got those indicators documented. I know when I mentioned fludro, one doc or assistant immediately said "for Addison's?" so they might get caught up on that (which happens to be something perhaps wise to screen for if you have any supporting clinical signs, BTW).

NCS is NeuroCardiogenic Syncope (fainting). Basically, having your BP drop and then fainting. dinet have a great page on it. I've fainted just a few times... I get pre-syncope a-plenty though. Not sure if it needs to be frequent to qualify for NCS. I've heard the BP drop part called NMH (Neurally Mediated Hypotension) too... not sure if that's same as Orthostatic Hypotension... maybe one is a "diagnosis" and the other a mere "sign" or "finding"... docs get finicky with that stuff!

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Thanks Erik. There seems to be a grey area on how drugs are used here in the UK. I know they use various drugs for conditions where it is the side effects that are what's wanted. Maybe this doc. is conservative. Re. NCS I've only actually totally fainted once, but get the pre-syncope a lot like you and it's certainly not life enhancing.

I know I was prescribed fludrocortisone without concern of existing aldosterone level... just to boost whatever is there. I'm not sure about other folks or if your doc has a solid point or not. Near as I can tell, in the context of POTS or similar (as opposed to treating Addison's or related illness) one isn't "hormone replacing" but is intentionally augmenting that effect (telling kidneys to retain salt, and hence more water during the internal kidney re-absorption process). I believe in US fludro is "authorized" for orthostatic hypotension and orthostatic intolerance amongst other things... so a doc doesn't have to stretch themselves "off label" if you've got those indicators documented. I know when I mentioned fludro, one doc or assistant immediately said "for Addison's?" so they might get caught up on that (which happens to be something perhaps wise to screen for if you have any supporting clinical signs, BTW).

NCS is NeuroCardiogenic Syncope (fainting). Basically, having your BP drop and then fainting. dinet have a great page on it. I've fainted just a few times... I get pre-syncope a-plenty though. Not sure if it needs to be frequent to qualify for NCS. I've heard the BP drop part called NMH (Neurally Mediated Hypotension) too... not sure if that's same as Orthostatic Hypotension... maybe one is a "diagnosis" and the other a mere "sign" or "finding"... docs get finicky with that stuff!

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  • 7 years later...

I think that it is also important to discern why one's NE levels are so high and treat accordingly.  In my case it seems to be a response to low blood volume and blood pooling.  I feel much better on Florinef even though I have very high NE.  Doc didn't try it right away, but did after I described how I feel during and after having to stand.  

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