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Jacquie802
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Hi, I just had a few questions...

My first question: Does anyone else get SOB after a shower??? Anyone know the cause(s) is/are?

My second question: Does it matter what time I take the Florinef? Is it okay to take it in the afternoon? I know the morning is prob the best but I went to bed after I got home this am and I didn't want to take it too late in the day, because I didn't know if it would make my bp too high.

Thanks again for all the info given, I really don't know what I would do without you all! B)

Jacquie

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Guest CyberPixie

I take half when I wake, half at 3pm and half at 9.30pm. Doesnt stop me sleeping, it actually makes me feel a little bit better so I can actually sleep! My endo told me to take it all in the morning (after I'd been on it for 3mths!) but it works better for me taking it throughout the day, some people do find this.

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To answer your first question, I think many of us get POTSy after a hot bath/shower, so if SOB is included in your POTS symptoms, it would stand to reason. I will get tachy and nauseated after a hot shower/bath, and sometimes black out to boot. Yes, I also get SOB, but it's probably from my other condition.

good luck!

ariella

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Showers are the worst!

I am so gasping for breath when I take them. I have to take them at night when my BP is higher, nausea lower and I can go and lay down for awhile after them. If I take them in the AM- forget about getting to work anytime soon!

I take 4 florinef pills in the AM all at once. Is this bad? I thought about spacing them- but then I usually forget and then that's just bad. You've got to love this stuff though. Relatively cheap, small and helps keep all the germies away. I'm going to start calling them my sunshine pills. Let the pharmacist figure that one out!!

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I can only take cool showers. Have tried warm showers and baths and I just cant do it. My doc told me to take my last dose of florinef no closer than 4 hours before bedtime, and that is also what it showed on the paperwork from my pharmacy. My b/p raises when I lie down, I dont know if everyone elses does or not. Vanessa

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while i know that everyone is different i've never heard of the instruction to not take florinef just before bed. (the 4 hour before bed rule is the actually the general rule for midodrine). the reason for this - and why it shouldn't - theoretically - matter when florinef is taken is b/c it's a med with a long half-life, aka it takes a fairily long time to build up in one's system & in turn stays in one's system a long time.

when i was on florinef once a day i took it in the morning though my docs said it was up to me & when on two pills a day i took one in the AM, one PM per my docs' instructions.

despite the long half-life i would tend to think that for the most even-keeled dose to be in one's body it would be best to spread out doses in am & pm but that's just my thinking out loud...nothing technical/official.

regarding showering i am always short of breath afterward regardless of when (though the degree varies depending on time/day). i ALWAYS need to lay down after showering - anywhere from 20 min to 2 hours or more - despite sitting during the shower. i don't shower nearly as often as i'd like or "normally" would b/c often it's a choice between taking a shower & _________ (fill in the blank with one of a variety of things). within reason, and out of necessity or choice, i sometimes do the "other" item.

for me being short of breath equates with my heart rate. there is nothing wrong per se with my lungs/breathing but when my HR is very high (or very low) i feel short of breath. i've been told by many docs that this can be par for the course with tachycardia & bradycardia.

hope this helps...

B) melissa

Edited by Sunfish
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Thanks for all of the replies. When I am in the shower I have to sit in one of those shower chairs. It helps somewhat, but I still get the dizzy & SOB feeling when I get out and I feel like if I don't sit/lay down right after the shower I will pass out. I used to shower everyday, but that hasn't happened in a lonnnnnnnng time. For those of you who have trouble showering, in betweeen showers you could prob use those lever 2000 body clothes. I used to carry then around during the summer if we went to the beach then out to dinner,etc. Also, there is dry shampoo which I have never used, but if you can't make it to the shower it's better than nothing. Once again thanks for the replies! B)

Jacquie

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Well I cant provide an answer about florinef.. I have taken it.. but felt so crummy I dont really remember what time of day that i took it.. though I'm thinking in the AM sound probable...

About showers... Lord!.. I at one point got to where i passed out allmost evry morning after a shower.. even a cool one.. b/c 1. it was like 5 am..well morning! YUCKY! and I was always ina hurry o get out the door..2. it wassummer time.. and all the fans did was blow the hat air around even more!..

sometimes I had warning that I was going to pass out. and sometimes i did not..more nots then dids..

So I got to where if I could "skip a shower in the AM I would....I use one of the shower chair thingys all the time now.. and ahve found that a detachable shower head is also very helpful..

Oh passing out after a shower and stuff makes ense for a POTSY b/c while you are in the shower.. warm or hot.. it casues blood vessel and stuff in your legs to dialate... then the standing on top of that...not a good combo!

So i now only take a shower at night.. I have a very small window of time between 11pm and about 1am.. where i can shower--eat-- maybe walk alittle-- w/ o getting really aymptomatic... so showers at nigth are a good thing!

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Know what makes me more nervous about showers...? Is showering in the summertime. That takes such a toll on me, it really is the worst.

As for the summertime, I found out that sitting in a pool helps soo much though if there is no a/c around. I don't know why, but prob being submerged (sp?) in the cold water helps alot with constricting our blood vessels..? Just a thoguht!

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LOL.. I know that when i get real symptomactic.. that i want to stick my feet in the snow sometimes.. for relief.. or have somebody dump ice over my head... b/c I will feel so internally overheated that nothing cools me down!

But eh constitriction of blood vessels is good! and the pool I think helps one being that you are in water. and you body is lighter in water.. casusing less strress on the body...B)

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B) Hi, I get SOB and wiped out after a shower. The combination of the standing and hot water makes me worse. The standing drops my bp and the hot water dilates my blood vessells. Sometimes I have to lay down for an hour or more to recoup. Tonight I have church and I usually take cool baths, which is torture in the winter, but I don't wipe out as easily. I still have to give myself one to two hours to recoup before being able to go to church or anywhere. Hope that helps. I don't have much experience with florinef. I am on beta blockers now and in feb. my cardiologist will start me on florinef. Good luck. Donna

Hi, I just had a few questions...

My first question: Does anyone else get SOB after a shower??? Anyone know the cause(s) is/are?

My second question: Does it matter what time I take the Florinef? Is it okay to take it in the afternoon? I know the morning is prob the best but I went to bed after I got home this am and I didn't want to take it too late in the day, because I didn't know if it would make my bp too high.

Thanks again for all the info given, I really don't know what I would do without you all! :)

Jacquie

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the main reason pools are often helpful for many of us is b/c they provide compression to the entire body....essentially the equivalent of wearing support hose from top to bottom and thus increasing circulation significantly.

and if one is actually swimming...or floating for that matter....there's the added benefit of being flat.

and like mentioned warm or cold temps may be helpful to some for various reasons. personally i have problems with extreme temps in either direction (i'll pass out b/c my body's temp controls are so out of wack) but we're all different in that regard.

hope this helps explain a bit...

B) melissa

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Thanks Melissa as well as everyone else. I never knew why swimming, etc. had such a good effect, I just know it helps me out sooo much. I noticed that very cold weather bothers me as well but not as bad as the hot weather. Any time the outside temp is over 70 I get very symptomatic.

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Guest CyberPixie

Been reading these replies with great interest. How come you're all better in the PM and worse in AM? Mine's the opposite! By time I get to 3pm symptoms get worse and usually carry on getting worse. I do get times later evening I may feel better but thats only bout twice a week.

I find baths worse than showers though there's not much to choose between them. Last time I had a bath, I was struggling for breath for hours after and it just laid me flat for a week. The shower, the force of the water (even if I turn the power down) makes me gasp and makes me tachy and palpitations. Then it takes me week to recover.

Would so love to be able to have a bath or shower but have been too ill to do so since last April. Having to make do with bed baths which isnt ideal and I havent been able to wash my hair since about last June YUK! It is true your hair cleans itself (kind of!).

As for Flori (Florinef) as I call it, I havent noticed it raises BP when lying down. My BP is around 100/70 when lying, 120/80 when sitting and usually raises when standing (since I've been on the flori) to around 139/90.

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Hi, baths are a HUGE NO for me. The last time I took a bath (can't even remember when) I thought I was going to pass out.

As for being better in the PM I think it is because I have been moving around a little bit. When I first get up in the AM is when I have most of my problems, most likely because my BP is lower from laying down?? I'm not sure why I feel better later on in the day. Of course there are those days that I feel bad no matter what time it is or what I have been doing.

Another thing to avoid is a Hot Tub....enough said! :(

Jacquie

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