Questions

[turtlefairy5]

I have some questions concerning my struggle with POTS. If anyone can weigh in on any of these, I would be grateful.

1) My doctor just prescribed Florinef .1mg twice daily. I'm anxious about taking it because of what I've read here on the boards concerning side effects, and because of the long list of side effects I read when I Googled the drug. Among the rather long list was anxiety and agitation. I already have a problem with both of those, so I'm concerned. I'm also concerned about the physical side effects, as well as the blood work - I hate needles. I go to extremes to avoid blood work. So, can anyone give me any encouragement about the side effects and blood work? How often do you have to get blood work? How bad are the side effects?

2) When I get tachycardia and fatigue while standing, walking around, trying to go about normal life, I also get hot-flashy. I'm 29, not really in the realm of menopause. Does anybody have heat waves/hot flashes/general feeling of being to warm with their POTS symptoms?

3) I know the normal resting heart rate is supposed to be somewhere in the 60 - 70 bpm, but what is the normal "active" heart rate? Not the aerobics/exercising heart rate, which I think is supposed to be around 130 - 140 bmp, but the heart rate of someone who is, say, taking a shower or unloading the dishwasher? Mine is usually in the range of 100 - 120. Is that range of heart rate what's making me so tired just trying to do everyday things?

Thanks,

Amber

[Katja]

I felt terrible at .15 mg - although I'm not sure whether any of the other symptoms were due to the Florinef, my blood pressure went too high (from 115 to 135-140 supine, and up to 155 sitting), and my neurologist had me decrease the dose. I felt fine again within a week, or so, and my blood pressure is okay now. I don't seem to have any noticeable side effects at .1 mg, which is my current dose, and it does help a lot with most of my orthostatic symptoms, including the cognitive slowing. I've been taking it since November, and I'm very happy with it, so far. I've taken so many meds by now that I'm mostly relaxed about side effects, and no longer worry about them until they actually happen, since it's impossible to predict which ones I'll get, anyway . The worst that could usually happen is that at some point I'll feel very awful for a few weeks, until it becomes clear that the dose needs to be decreased, or that I can't tolerate the medication. At best, I'll find something that will give me significant short- or long-term relief from symptoms, the possibility of which is usually worth the risk of feeling terrible for a while. If you're worried, maybe you could ask your doctor to start you on a lower dose? I started at .05 mg, once daily, for two weeks, before I went up to .1 mg.

I sometimes get heat waves and hot flashes after being upright too long. I'm 25.

I don't know the answer to your third question.

[firewatcher]

I have some questions concerning my struggle with POTS. If anyone can weigh in on any of these, I would be grateful.

1) My doctor just prescribed Florinef .1mg twice daily. I'm anxious about taking it because of what I've read here on the boards concerning side effects, and because of the long list of side effects I read when I Googled the drug. Among the rather long list was anxiety and agitation. I already have a problem with both of those, so I'm concerned. I'm also concerned about the physical side effects, as well as the blood work - I hate needles. I go to extremes to avoid blood work. So, can anyone give me any encouragement about the side effects and blood work? How often do you have to get blood work? How bad are the side effects?

Can't answer, other than don't look when they take your blood. Those tiny needles are great now days, you barely even feel them! Get to know a nurse at the doctor's office, ask them who is the best "stick" and have them draw you labs. ALWAYS have them do it, wait if you have to. A good tech/nurse can do it where you barely feel it at all!

2) When I get tachycardia and fatigue while standing, walking around, trying to go about normal life, I also get hot-flashy. I'm 29, not really in the realm of menopause. Does anybody have heat waves/hot flashes/general feeling of being to warm with their POTS symptoms?

Part of dysautonomia can be a thermo-regulation thingy, if your system goes into hyperdrive you'll get a sudden flush from the increased blood-flow or vasodilation. It could be MCAD (the mast cell thing) but the odds are against it. According to the studies, it is only half of the hyperadrenergic POTS cases, so that's 5% of the POTS population (it is just us 5% who post most frequently on the board---I bet that's part of the condition! )

3) I know the normal resting heart rate is supposed to be somewhere in the 60 - 70 bpm, but what is the normal "active" heart rate? Not the aerobics/exercising heart rate, which I think is supposed to be around 130 - 140 bmp, but the heart rate of someone who is, say, taking a shower or unloading the dishwasher? Mine is usually in the range of 100 - 120. Is that range of heart rate what's making me so tired just trying to do everyday things?

My heart-rate (unmedicated) is about that too, dishes will send it over 100 bpm and laundry will take it above 120 bpm. My exercise HR is much higher than that (unmedicated) slow walking is 130-ish and everything else goes up from there.

Thanks,

Amber

[masumeh]

Hi,

I tried florinef and couldn't tolerate the side effects. I actually had psychosis. It's the first time I ever took a med without reading the pamphlet of side-effects beforehand. About half-hour after taking the first pill (don't remember dose, but I think it was high), I got a strange headache. Then I rushed to read the pamphlet...that was a possible side effect. I soon felt weird, like all the things around me were disconnected and floating. Then I just felt like I had to sleep. I knew my logic was slipping, and I was afraid of saying something strange, so I just tried to wait it out until the pill wore off. It took all day and night, but I was normal the next morning. This is really rare though. I have never met anybody else who had that reaction to florinef, although it's possible with any steroid (and florinef is a steroid).

Yes, hot-cold feelings are a big part of POTS for many sufferers. That's because temperature regulation depends on the autonomic nerves; they dialate and constrict blood vessels in to cool or preserve body heat according to your homostatic needs. Ours doesn't work right, so we need to control our environment, etc. Getting hot can be a precursor to fainting, tachy episodes, etc. When we faint, we might feel clammy and cold becuase of the blood pressure drop. And you might notice that your extremities (including fingers, toes, and nose) are abnormally cold--that's due to circulation problems. It really bothers some people because it can be so cold it feels achy, even if the rest of the body feels normal. I get it, but I don't mind the feeling...in fact, I play tickle games with my daughter (age 5) when I get "cold fingers". It's fun!

Below 60 is bradycardia (slow), above 120 is tachycardia (as far as I know). When I calculated my upper parameter during exercise, it was 120. It really depends on your age, body type, height. You can do a quick online search for the exact parameter calculation. But 80 is just right for most adults. 200 is considered extreme tachy.

Good luck with the florinef. If you don't like needles, try self-talk to cope...like ask yourself if it could be worse, and convince yourself it's not a real threat, rationally...and also, just don't look

[mkoven]

Could you start at a low dose and see how you tolerate it? My doc first put me on .1, and I felt an agitated rush about 30 minutes later. I then restarted at .05 and was okay. significant improvement in symptoms. I'm now on .075 (3/4 pill) in the morning and it seems to work. I think taking the lowest amount of a drug that is effective is the way to go. You could even start on a quarter pill, wait several days, see how you feel, then titrate up. Florinef is a drug that takes a couple weeks to have full effect, but I find it really helps combined with florinef (and compression and exercise). I don't really notice any side effects. My bp is higher, but still fine-- 115/75 instead of 90/50. My electrolytes have been okay. I take supplemental magnesium to help me hold on to potassium. Last check my potassium was 4.1, which is totally normal.

[dsdmom]

Masumeh, I had the same feelings you are describing when I tried Florinef. I felt like I was disconnected from my body - I tried it for a few days and then had to stop. Nice to know my body is not alone in reacting that way!

[EarthMother]

I am the Queen of Panic, and have extreme reactions to meds. I take very small (pediatric doses) when starting anything new. That said I had NO PROBLEM (no side effects, and actually little improvement if I recall) when I took Florinef years ago. I'd take it again, but my cardiologist doesn't feel its warrented for me at this time.

I have no problems with blood draws and don't mind being a human pin cushion for newbie techs. But if it pain that is the issue for you ... ask for one of the "butterfly" needles they use in pediatrics. Many labs use them exclusively anyway these days. If you are feeling POTSY on the day of the draw ... ask to lie down. And stay laying down for a couple minutes after as your system settles a bit. (And feel free to close your eyes and visualize something tranquil or outragiosly funny!)

If I try and load the washer my HR is 120+. Needless to say my husband has to hang them on the line. I could no more stand and raise my arms above my head than I could fly. What I DO do is keep a high barstool around and use it to cook (tho all my prep work -- cutting boards, food processor -- is done on the floor) or wash dishes. I also use a dust pan and hand held brush for "sweeping" the floor and a bowl of water and sponge to "mop". I find that for the most part my muscles are strong (tho I still fatigue more easily than most) and I can do more physical activity if I am sitting or squatting on the floor.

Good luck finding things that work for YOU!

~EM

[Ernie]

Hi,

I sweat in all position but when I am standing it is as like I just came out of the shower.

A normal person standing should have a HR of no more than 15 BPM from the resting HR to the standing HR.

[flop]

1) Fludrocortisone (Florinef) was the first medication that I was prescribed when I was diagnosed with POTS and I took it for over 3 years (and my doctor is considering using it again with me).

I was started on 0.05mg (50 micrograms) once daily, which is half a tablet. After 2 weeks I went up to 0.1mg (whole tablet) once daily. My doctor kept increasing the dose by half a tablet until I reached 0.3mg daily.

My doctor has only ever prescribed fludrocortisone to be taken at breakfast time. I know several people have been told to take it twice daily but I can't see the reason for this. Florinef works slowly (takes several weeks to get full benefit) so it is not going to "wear off" part way through the day. Also all steroids can mess with your melatonin production (steroids switch off melatonin) so you should take them whan the body makes its own natural steroids at breakfast time (this will prevent steroid induced insomnia).

I would start with a small dose and talk to your doctor about taking it once a day versus twice a day.

I had no side-effects at all from taking fludrocortisone. I only had my bloods checked twice during the first two months to see that my potassium wasn't low, after that I only had bloods done when they were needed for other reasons. My doctor was more concerned about me getting my BP checked.

2) Yes I got hot rushes frequently, I think it is quite common in POTS.

3) For resting a "normal" heart rate is 60-100, anything over 100 is "tachycardia". I don't think that there are any defined ranges for active heart rates but it shouldn't shoot up and you shouldn't really be aware of it whilst doing normal things in the house. Fludrocortisone increases blood volume and by doing that can slow down our heart rate response to being upright.

Flop

[turtlefairy5]

Thank you, THANK YOU for all your responses!

I'm feeling a little bit better about things.

Still worried 'bout the Flo'nef, especially because my dose seems a little high comparitively to all ya'll's. Hmmm...

We'll see how it goes.

I know that I certainly don't need psychosis - I'm mental enough as is (note my signature).

I'm just going to have to get over the blood work. Stiff upper lip and all that. I've done it before, I can do it again. Nothing like a little exposure therapy for a phobia. I don't know why I'm so scared of it.

Anyhoot, thanks again...

Amber

[mkoven]

Because I got weekly ( and useless) allergy shots as a kid, I'm pretty mellow about needles, though I still look away when I get stuck. I am always nervous about new meds. Can you call your doc ask ask to start at a smaller dose?

[HoudiniCat]

When first dx?d, I was prescribed Florinef .1 mg twice daily and after reading about the side effects was very hesitant to take it. But my POTS symptoms were out of control so I figured I?d give it a try. I took it for a little over a year ? it helped control my POTS symptoms a little (maybe saw a 35% decrease in symptoms) and had no side effects at all.

As for the hot flashy feeling accompanying the tachycardia, I too experience that frequently. Mostly it?s just very annoying but I can deal with it. When it goes into overdrive though, I know it?s time to call it a day with whatever I?m doing because it usually signals a fainting episode for me.

As for the normal active heart rate question, my doc said that everyone is different so it will vary but he basically said to ?keep it under 100? when up and about doing simple, everyday tasks.

[turtlefairy5]

Thanks again for the responses, everyone.

HoudiniCat, I'm a little relieved that your doctor, too, prescribed the .1mg twice daily. I'm glad to hear too that I'm not the only one who was hesitant. And I'm glad to hear that it's been okay for you.

I'm still hesitant. Especially after reading this info article (scroll down to the part about Florinef). That and reading the various dosages here, I felt that my doctor was immediately putting me on the higher (highest?) end of the range of doses, and I wondered why. I didn't like it. The last dose I took was yesterday morning.

Too, I have a cold right now, which is making me feel miserable. I read somewhere that Florinef can affect the immune system and the body's ability to fight infection, so that freaked me out, too. There's just a lot of stuff to be freaked out about about this drug (not to mention that I'm a bit of a hypochondriac).

It bothers me that my doctor seems to have put me immediately on the higher dose, and it bothers me that he didn't really mention any side effects, even when I asked for a run down about side effects - he seemed pretty non-chalant about it. I'm concerned about the potassium thing too; the website I linked mentioned taking a potassium supplement (regardless of blood test levels) but, again, the cardiologist didn't suggest that, he just ordered blood work to check it.

I'll probably, maybe start the Florinef again after I get over this yucky stinking cold mess, though at a lower dose.

Grrrr. Frustrating medical treatment. I don't know how to tell my concerns to the doctor. I don't want to come across as questioning him, but, I guess that's exactly what I'm doing. I've just learned the hard way to be, what?, obstinate, I guess. ya know?

I'm also dealing with all kinds of other meds for other (mental) conditions, serious no-kidding drugs that I worry about taking too, and it's difficult to know how to balance all this medication and trust the different doctors or even the pharmacist to know these drugs and how they mix and the affect they're going to have, on the other drugs or one of my conditions, or just my physical or mental health in general, short or long term.

Thanks for letting me worry and rant,

Amber

[iheartcats]

I understand your concern about medicine. My doctor told me I'm so stubborn about trying new medicines, but it makes me nervous. I can't help it. So I get you and wish you good luck with this.

I get hot flashes when I overdo things. I feel like an old lady! It *****!

And...my heart rate is usually 100-135 doing laundry/dishes/walking/etc. It spikes to 150s sometimes. And stairs/more exertion make it hit around 180! My doctor has said this is typical for POTS....and I can't take a Beta Blocker yet because we're sorting out other issues. And yes, it exhausts me sometimes. Hard to get through a day of work and still have any type of life.

[ramakentesh]

Some forms of POTS and POTS patients find Florinef very helpful - others have issues. I had issues but a lot of patients think it is very helpful.

I tolerate licorice root better - it has the same effect but it harder to get the dosage right.

As for hit flushes - there is a myriad of reasons POTS patients get these kinds of symptoms standing. Excessive sympathetic activity, sudden increases in NE or Epinephrine to counter the bodies perception of a sudden blood pooling event, etc.