Maisie87 Posted November 12, 2009 Report Share Posted November 12, 2009 Has anyone been prescribed florinef and sudafed for POTS?? Has either helped symptoms? and I'm not sure I understand the reasoning behind the sudafed.. I tried to call him but he's out of the country until later next week..thanks! Quote Link to comment Share on other sites More sharing options...
JennaC Posted November 12, 2009 Report Share Posted November 12, 2009 My guess is those two drugs would help raise you blood pressure. I'm new and was just prescribed florinef. Sudafed products seem to make me more tachy, and my blood pressure doesn't fall too much when I stand. Quote Link to comment Share on other sites More sharing options...
mountain girl Posted November 12, 2009 Report Share Posted November 12, 2009 I am on Florinef 0.1 mg daily and feel like it does help me. I was ordered Sudafed for a different reason, ear congestion,but I did not notice it helping my pots symptoms any. I did not use many doses, but did not notice any increased tachycardia. Quote Link to comment Share on other sites More sharing options...
Maisie87 Posted November 12, 2009 Author Report Share Posted November 12, 2009 thank you both, I'll give the florinef a shot first. Quote Link to comment Share on other sites More sharing options...
erik Posted November 12, 2009 Report Share Posted November 12, 2009 I've been on Florinef (fludrocortisone) twice now. First time it seemed to help a little... then off it for testing which got delayed... then back on it. Second time on it I (and now off it again I noticed quite clearly how much it helped me (except my BP was getting a little too high, but one can just adjust for that and it won't happen to everyone). It's "first line" for POTS as well as more widely known conditions like Orthostatic Hypotension. It is one of the very few drugs that are actually approved for treating our conditions! Most are prescribed "off label", as they say!Sudafed (pseudoeffedrine) triggers norepinephrine release/activity which is a potent vasoconstrictor. I use it occasionally both by itself and as part of Claritin-D & Zyrtec-D and I personally note both some limited benefit and also increased tendency to palpitation. I call it my "poor man's midodrine" because midodrine is an alpha-agonist causing vasoconstriction that is also often tried for POTS... but is very expensive. If I'm having to be upright for a while (like with a recent work opportunity), I consider a little pseudoeffedrine to help... it can backfire though so one needs to get a feel for it. For example, if you are the sort that gets agitated from being upright and standing still (I get this horribly at times)... sometimes it can help to keep the body from inducing it's panic-like response to being upright... but if it doesn't manage to stave it off it can just as well aggravate it and put you even more on edge. I've mostly had luck with it (fludrocortisone + pseudoeffedrine) but I use the latter sparingly.BTW, phenylephrine, the replacement for pseudoeffedrine in the non-restricted OTC Claritin & Zyrtec is also a vasoconstrictor. Our sensitivities will vary so one might just have to cautiously give these things a try and see, unfortunately. I even get away with adding a little coffee to the mix... whereas others would have their heart flip out completely from this! It is probably wise to add one drug to the regime at a time, too. Quote Link to comment Share on other sites More sharing options...
peppermint patty Posted November 12, 2009 Report Share Posted November 12, 2009 I am so happy you posted this question. Yesterday, I was just prescribed florinef. I will be starting it in one week after I am weaned off of my beta blocker. I am always so hesitant about beginning new medications. ---Pat Quote Link to comment Share on other sites More sharing options...
lissy Posted November 12, 2009 Report Share Posted November 12, 2009 My fludrocortisone has been sitting in the med cabinet for 7 months , since I was about 18 any meds: antibiotics, Ibuprofen, anything I get instant extreme anxiety feeling heart races i shake sweat fell like I can't breath. And now I am paranoid to try anything ...anyone have suggestions?????? Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted November 13, 2009 Report Share Posted November 13, 2009 Florinef doesn't like me. It caused swelling and nausea along with chest pain last time I took it. (I think this is because I can't eat enough in the morning to counter the side-effects) I keep it with me for emergencies (ie, I turn white and know my BP has dropped out, or when I get my period)Sudafed, I love. It "convinces" my heart that it's beating too fast, so it slows my heartrate and it also raises my blood pressure. I know you can get used to it, so I save it for when I need to be upright. I have a prescription for the real stuff. It does tend to dry out my nose too much, but it's worth it. I would take it all the time if I could.Sara Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted November 13, 2009 Report Share Posted November 13, 2009 Bear with me as I tpying and reading through a florinef migraine. I started it about 8 weeks ago and maybe a month ago had my 3 ttt test. I lasted about 5 mins on the table and today the doctor told me that the results showed that I continued to remain in tachy much longer than one with just pots would although I do have POTS. They believe another part of my brain is being activated and I need another medication to stop it.Now this never happened when I had the same test before at the same place and lasted 20 mins up. Could it have been the florinef? I don't do well with cortisones and never mentioned it today at my visit because my visits are sooooooooo long and intense and so much to cover. I'm in there for one hour and my head is pounding so bad it never comes it my mind to bring up the florinef and that I just gained 20 lbs being on it...Does this make sense to anyone?bellamia~ Quote Link to comment Share on other sites More sharing options...
prettyinpink Posted November 13, 2009 Report Share Posted November 13, 2009 Florinef works but causing your body to retain the sodium you eat which causes you to hold water. Therefore your salt intake affects how well the florinef works. I took florinef for 2 weeks but i noticed that my bloodsugars were running higher and higher so i stopped it.Florinef increases your blood volume which increases your blood pressure which should help decrease you heart rate if your heart rate is increasing to compensate for a drop in blood pressure.Bella Mia- Its hard to figure out how florinef would make you more tachy but, we all know sometimes people with develop had abnormal reactions to medications. It sounds like the florinef is making you worse-is it helping you at all? Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted November 13, 2009 Report Share Posted November 13, 2009 Yes, I'm not fainting or having near faints in the middle of the night. also, In the morning my bp is now above 99 where before I couldn't even get out of bed.BellaMia~ Quote Link to comment Share on other sites More sharing options...
erik Posted November 13, 2009 Report Share Posted November 13, 2009 BTW, in the genera of OTC meds, and only slightly off topic, NSAIDS such as Ibuprofen are also capable of helping to increase blood volume (and stave of BP problems like Orthostatic Hypotension) similar to fludrocortisone. I don't hear it mentioned much, but it's on some of the POTS med lists. My recent phase of overly high BP might have been from compounding effect of fludro/salt and also consistent Ibuprofen (which I was temporarily taking for some soreness). I don't think one or two here and there are expected to do too much, but consistent use seems to promote blood volume.Also, licorice (licorice root) is said to be beri beri similar in effect to fludrocortisone. He he, sneaked in the name of a super-fatigue disease there, how clever Could keep that in mind just in case fludro doesn't pan out.One last note from Mr. Babbel here, as with many meds there can be some adjustment phase when starting it. I got ultra tired and moody for a few days, and had consistent headache for a bit, when starting fludro the first time... but it passed and stabilized to be beneficial. Keep your doc appraised of your reaction and have them help determine whether something is significant enough to stop or worth putting up with in case it will pass. Probably keep an eye on BP in the rare event that it goes up a bit too much (probably not too likely especially if you're typically low). Consider tapering the dosage up slowly if you seem sensitive to it or other stuff in general, though some people just jump in without a problem. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted November 14, 2009 Report Share Posted November 14, 2009 BTW, in the genera of OTC meds, and only slightly off topic, NSAIDS such as Ibuprofen are also capable of helping to increase blood volume (and stave of BP problems like Orthostatic Hypotension) similar to fludrocortisone. I don't hear it mentioned much, but it's on some of the POTS med lists. My recent phase of overly high BP might have been from compounding effect of fludro/salt and also consistent Ibuprofen (which I was temporarily taking for some soreness). I don't think one or two here and there are expected to do too much, but consistent use seems to promote blood volume.Also, licorice (licorice root) is said to be beri beri similar in effect to fludrocortisone. He he, sneaked in the name of a super-fatigue disease there, how clever Could keep that in mind just in case fludro doesn't pan out.One last note from Mr. Babbel here, as with many meds there can be some adjustment phase when starting it. I got ultra tired and moody for a few days, and had consistent headache for a bit, when starting fludro the first time... but it passed and stabilized to be beneficial. Keep your doc appraised of your reaction and have them help determine whether something is significant enough to stop or worth putting up with in case it will pass. Probably keep an eye on BP in the rare event that it goes up a bit too much (probably not too likely especially if you're typically low). Consider tapering the dosage up slowly if you seem sensitive to it or other stuff in general, though some people just jump in without a problem.Mr Babble,Babble on please as I really enjoy your babbling. We did the ibuprofen as my allergies to everything and when I started bruising on my stomach and petechiae going up my legs out went the ibuprofen. I only take one pill one day and then two the other. I'm sick of the nightmares, extra weight gain,being sooooooooooo tired. i want to make my bed and not have a bp of 160/101 and hr 154 and have to lay down for the rest of the day!Bibbily babble boo, bellamia~ : ) Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 14, 2009 Report Share Posted November 14, 2009 Can people buy enough Sudafed to be useful, given that it's so tightly controlled now thanks to meth cooks?Just curious. Amy Quote Link to comment Share on other sites More sharing options...
Griffin Posted November 14, 2009 Report Share Posted November 14, 2009 My consultant is going to start me on fludrocortisone soon plus some other drug which I don't know the name of at present and it's been helpful reading all your comments. I asked him about midodrine and he had never heard of it, looked it up in his "book" and it wasn't there. Is it off label? Quote Link to comment Share on other sites More sharing options...
Lenna Posted November 14, 2009 Report Share Posted November 14, 2009 Also, licorice (licorice root) is said to be beri beri similar in effect to fludrocortisone. He he, sneaked in the name of a super-fatigue disease there, how clever Could keep that in mind just in case fludro doesn't pan out.Licorice Root was a godsend for my son for a few months. Alas, its effects seems to have worn off but we might put him on a licorice "vacation" for awhile and then try again.Just remember that with Licorice Root, like Florinef, you might need extra Potassium. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 14, 2009 Report Share Posted November 14, 2009 Does Benadryl do the same thing as Sudafed? Benadryl seems to make me tired....Anyone know? Thanks!Jana Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 14, 2009 Report Share Posted November 14, 2009 No, Griffin, it's not off-label. Perhaps if you looked under "ProAmatine"? It's the same drug. You can look it up on the net under 'rxlist' or in webmd.com's site under the 'drugs' section.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 14, 2009 Report Share Posted November 14, 2009 "BTW, in the genera of OTC meds, and only slightly off topic, NSAIDS such as Ibuprofen are also capable of helping to increase blood volume (and stave of BP problems like Orthostatic Hypotension) similar to fludrocortisone. I don't hear it mentioned much, but it's on some of the POTS med lists. My recent phase of overly high BP might have been from compounding effect of fludro/salt and also consistent Ibuprofen (which I was temporarily taking for some soreness). I don't think one or two here and there are expected to do too much, but consistent use seems to promote blood volume."Unfortunately, they are also REALLY hard on the kidneys! My nephrologist says that no one, no matter how healthy, should be on NSAIDs longer than three days. He says we are about to see a huge increase in kidney failures because of the overuse of NSAIDs. "Does Benadryl do the same thing as Sudafed?"No, Benadryl is an anti-histamine and Sudafed is a decongestant. The anti-histamine effect of Benadryl is actually a side-effect since it is also a potent central nervous system depressant: that is why it makes you sleepy. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 14, 2009 Report Share Posted November 14, 2009 Does Benadryl do the same thing as Sudafed? Benadryl seems to make me tired....Anyone know? Thanks!JanaNo, Benadryl is an antihystamine, and yes, it makes people tired. In fact, my brother-in-law, who's a doctor, recommends it for people with insomnia. My husband takes it sometimes.Sudafed tends to do the opposite -- get people wired. People who have hypertension aren't supposed to take it.Amy Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted November 14, 2009 Report Share Posted November 14, 2009 DOES THE OPPOSITE TO ME. I'VE ALWAYS BEEN MUCH BETTER WITH ONE OR TWO ON BOARD. WHEN MY ALLGERA WON'T WORK I HAVE TO TAKE BENADRYL. MAYBE IT WAS JUST MAKING MY BP HIGHER TO STAND..LOL BLESSINGS & LOVE,BELLAMIA~ Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 14, 2009 Report Share Posted November 14, 2009 No, Benadryl is an anti-histamine and Sudafed is a decongestant. The anti-histamine effect of Benadryl is actually a side-effect since it is also a potent central nervous system depressant: that is why it makes you sleepy.Jinx! Said same thing at the same time! Quote Link to comment Share on other sites More sharing options...
erik Posted November 19, 2009 Report Share Posted November 19, 2009 Can people buy enough Sudafed to be useful, given that it's so tightly controlled now thanks to meth cooks?I think it varies state-to-state. In CA & HI where I've dealt with this I think you can get one "box" every couple weeks or something? It was enough for me since I'm sporadic. I think it would generally cover about 1 a day IIRC. Works for extended stuff like Claritin-D/Zyrtec-D but for 4-hour sudafed I think you're in a bind. Might need doctor scrip for mass quantities... or just have friends & family sign for additional ones.Darn "chefs". I was short-cutting through a canyon and bumped in to some cops clearing out some junk a while back... they told me someone had been cooking in the canyon. It wasn't 'til an hour later that I realized they meant the meth thing... I was picturing a campfire scene So-Cal used to be the mecca... maybe that has changed. Surprised more people didn't blow themselves up. Quote Link to comment Share on other sites More sharing options...
Darlene Posted November 19, 2009 Report Share Posted November 19, 2009 My Mom gave me sudafed when I was a kid, and I thought I was gonna have a heart attack. My heart was beating so fast. Quote Link to comment Share on other sites More sharing options...
kayjay Posted November 19, 2009 Report Share Posted November 19, 2009 I was told to stay far far away from sudafed. I think if you have hyper POTS it is a bad idea. Quote Link to comment Share on other sites More sharing options...
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