Confessions

[preacherswife]

Am I the only imperfect dysautonomia patient? Do y'all do stuff you're not supposed to do too? Here are my confessions...

1) Sometimes I forget my evening dose of Metoprolol.

2) I rarely get ALL the water I'm supposed to take in.

3) My thermostat is not set on 70 degrees because I would freeze to death if it were. (Although my husband would probably shout to Glory, as he says I smother him to death with the thermostat on 75 -- or higher if I can get away with it!)

4) Here's the biggie... I LOVE a HOT bath. (I know! It's so bad! And yeah, I feel worse when it's over, but while I'm soaking, it's heaven!)

I have an excuse for #1 and #2 though... I have two little boys, 2 years old and 8 months old. It's hard to remember meds and drink water all day while running after them. But I don't have an excuse for the other two. Shame on me!

Okay, I can't be the only one... Can I?

[maryfw]

My biggest is the same as yours, I take a HOT bath every morning and night. I have always been so cold natured and it helps me relax.

I drink water and Gatorade all day long so I probably do pretty good there.

I lift things I shouldnt and take stairs sometimes when I shouldnt because I am around other people and I look healthy and hate to go through the Whole explanation so sometimes it is just easier to do what I am not supposed to do.

mary

[mattsmum]

Same I love hot baths and hot showers I think because I can get so cold hands and feet its a lovely way to get warm! Sometimes I truly do regret it afterwards tho.

[pastordari]

preacherswife . . . .YOU ARE NOT ALONE!

I'm pretty good at taking my meds, but at times there are so many I can't remember if I took this or that. I just hope whatever I may have forgotten isn't too consequential!

I try very hard to drink water and propel (my doc doesn't like gatorade because of the sugar content and it's propensity to stimulate tachy). I think it is pretty rare that I get 90-100 oz per day. I feel I have to really and truly be drinkinig non-stop to suceed. So I do the best I can and go forth!

As for the bath . .. I LOVE a hot bath. I take one when I want because I love it and because I am practically always cold. Being a bit dizzy is well worth the benefits of a hot bath. I do, however, keep a water bottle or something by my side as to feel less guilty! I tone the temp a bit when I am really symptomatic because I don't want to keel over or something! It would be embarassing to have to go to the doc for hitting my head in the bath or something and having to admit I was cheating on the treatment protocol.

Perfection is a fleeting goal at the best. There is no way to obtain it. Do the best you can and let it go. I don't know how you manage two little ones with this illness. Wow! I am tired just thinking about it!

It is OK preacherswife. We are all less than perfect.

(by the way, I am a pastor myself. I know some of what you and your family must experience by serving the church)

Dari

[doctorguest]

The most complicated aspect of treating dysautonomia - not unlike with some other disorders - is what we call "an individualized approach". Learning what works for you, which may not work for someone else with dysautonomia, is the key to managing symptoms and feeling better. While I obviously don't advocate skipping medications or not getting enough fluids, I want to reassure you that if you enjoy taking a hot bath, without getting so sick that you pass out or come close to it, you should keep doing it without reservations. The same can be said regarding temperature control - keep it at where you feel most comfortable.

[morgan617]

Thank you doctor guest, I take my meds, don't do hot baths, don't drink caffeine or alcohol or smoke, so figure I can have my house anywhere I need it...like 77 is good for me. I will pass this along to the hubby, I'm sure he will apreciate it too! LOL sorry, loopy from gastro this am.... morgan

[masumeh]

I gotta reply to these hot bath comments....

If you are a fainter, or even if you're not but you could faint, you really shouldn't risk the hot bath thing if you're alone in the house (or your husband isn't around to check on you during the bath). We're fortunate with POTS in that there aren't many ways to die from it...just takes away from functioning, etc....but it's not a lethal or fatal kind of disease. However, there are ways that it takes people's lives...if you faint at the wheel while driving, or if you faint in a pool or bath.

Last week I visited my POTS specialist, and I happened to walk into the empty waiting room while two nurses were discussing another patient's case. She just passed away because she had POTS and fainted and drown in her bath.

My doctor recommends a warm bath to relax muscles at the end of the day, to help me fall asleep....but I think these baths need to be watched by a competent helper.....at least for those of us who faint frequently. That "calming" effect is sometimes difficult to distinguish from lethargia that precedes a faint.

[flop]

I really enjoy a soak in a hot bath but I have fainted on getting out of the bath or when in the shower. My solution is to only enjoy the bath occasionally (showers cause fewer symptoms for me), and have a safety mechanism. My sister shares my flat with me and we each have an ensuite bathroom (luxury). When I am taking a bath or shower I get her to sit in my bedroom and do a quiet activity like reading or doing crosswords. This way if I were to faint she would hear me fall and could dash in to rescue me - I feel much safer. If she isn't at home then I sit on a stool and have a wash at the sink.

Flop

[dizzygirl]

WOW KUDOS to thos eof you who can still take a hot bath or shower...hot baths and showers.. are a big trigger for fainting .. or blacking out for me..or near syncope... I learned after my last bad faint in the shower that I keep it as cold as i can possibly stand it... and i run a fan to exhaust any heat and have my door wide open.. with another fan or the ac running.. and of course my lovely shower chair with a back.. and i only shower if somebody is at my apartment with me..

so please me careful with ur hot baths or showers!

[Becca_7706]

I'm so jealous of the hot bath it's one thing I really really miss. I can't risk it, I actually blacked once having had one (on my drs advice he told me to try it and see - I'm not blaming him it was my fault I know heat is a trigger for me but I used to _love_ hot baths so much I decided to try it) luckily it wasn't deep but even so it freaked me out, seriously folks you do not want to risk blacking out in a bath - tis seriously scarey.

4) Here's the biggie... I LOVE a HOT bath. (I know! It's so bad! And yeah, I feel worse when it's over, but while I'm soaking, it's heaven!)

[preacherswife]

Thankfully, I'm not a fainter. I've never actually fainted, so I can still do the bath thing. (Whew!)

[Maxine]

I take my bath at night when my husband is home in case I don't do well. I depends on what kind of day I'm having in regards to the temperature of the water. Sometimes I like to have it warm for my lower back, but I can't expose the upper back, as it makes things worse, and too much heat on my body.

I keep the water at a certain level if I'm up to soaking my lower back. I freshen up and wash my hair in the morning, and I bend slightly. However, I should not bend at all. Trying to figure out a way to accomplish this........ .

My thermostat is set on 72 at home in the summer, and 68 in the winter.

I should wear those support stockings, and I don't, as I'm afraid they would be too difficult to put on with the weakness I have in my arms from my upper spine problems.

Maxine :0)

[flop]

slightly off topic (sorry).

Maxine - have you tried doing a search for "dressing aids" on sites that sell compression stockings? There are several different sorts (frames that hold the stockings wide open, slippery fabric to glide them on) you may find that you are able to cope putting on a knee length pair with one of those?

Flop

[thejohnsongang]

I guess we all have our little confessions somewhere. I occasionally forget my meds but my husband and kids try to remind me. I keep all of mine in an organized pill box and keep them on the counter by the sink so I don't forget.

As for my other weaknesses.....I love soda..Pepsi is my downfall. I switched to Caffeine free when I was dx with POTS, but still drink it every day. I drink other fluids like water, tea and such, but Pepsi is my favorite even though I shouldn't have it.

As for the hot shower/bath issue. I think we all love it. I sure do, but I get very dizzy and lightheaded if I'm in it to long. I always shower with my husband, so if I do have a problem or get dizzy I can hold on to him. It what works for us. I have passed out in the shower before and have suffered the bruises and cuts on my back as I landed on the knobs and stuff. Very painful. We have thought about a shower chair, but I don't want to use one until I have to. I actually enjoy taking a shower with my husband and it's a time we can be close. I know not everyone has this option.

We all sneak once in a while and sometimes we pay the price for it, later in the day or next day. I have learned what works for me and my daughter is starting to learn what works for her.

[MomtoGiuliana]

I am good with meds, but can be bad about fluids and salt. Especially if I get a run of several weeks of feeling well. My EP says I should fluid load even if feeling pretty well, to avoid "crashes", but I do have a hard time with maintaining that.

[Heartwillforever]

I love taking hot baths and showers also! I have passed out once in the shower, so now I make sure someones home!

I'm pretty good on the high salt diet. I can never drink enough water,but I do forget to take my last dose of midodrine sometimes.

[Eli6596]

I love hot baths too. It is the only way to warm my chronically cold hands and feet.

The only reason I do not forget my medications is that I have symptoms if I am late by even 30 minutes for any of my dosages. It is a good reminder to take the pills. I always take the majority of my pills in the morning with breakfast. I never skip food so that helps me to remember the breakfast time pills.

Karyn

[Sushi]

Hi guys,

I too occasionally take a hot bath, particularly if I feel I need an epsoms salt soak for some reason. Here is a tip someone shared with me that has helped. When your bath is finished, pull the plug but stay sitting down and turn on the overhead shower--moving it from warm to quite cool, slowy. When you've adjusted to the cool and feel quite comfortable, slowly stand up, holding onto things for balance.

It takes a bit of fun out of the bath, but I have not felt a bit fainty when I did this. This is, of course, only for those of us who don't easily faint or have plenty of warning signs first. Agreed, drowning ain't worth it!

My other main sin is overdoing it--really getting into something and not being able to stop, even though I am starting to get my little chest pains warnings. Thiis one I pay for later. But after the enforced lethargy some of us have lived with, it is really hard to stop when you get into an activity you love, whether it is exercise or writing.

[roxie]

my thermostat is not set, I could not convince my parents.

My biggest sin is that I overdo ALOT, almost everyday and everyday I say today I am going to rest and then I either get to caught up or have too much adrenaline. I am really trying to learn to not overdo it, but it is not easy b.c I get bored.

Anytips on overcoming boredem?

Madeline

[yogini]

I confess to eating more sugar/carbs than I should. Just can't break away from pasta and cookies!

I do take hot baths from time to time, but not as scalding as I did pre-POTS. I just get a little tired or tachy, so I am OK as long as I rest or go to sleep after.

I love drinking fluids so that isn't a problem for me. Every once in a while, I'm late taking my meds. But I don't forget b/c I can feel it right away even though I only take a fractional dose of atenolol.

I'm with doctorguest. Since I can't do all of the things that used to make me happy, I allow myself to do the things that are tolerable POTSwise, even if not "recommended". Don't feel guilty - enjoy what you can!

[lizb]

Good topic, since DX with POTS I have continued to overdo things it is the major cause of arguments in my home. But the way I see it is, if I were to sit quiet and rest wait for a POTS 'attack" to happen, which it might not!!! It would be a complete waste of my time. My friends and family say I am in denial and I think there is nothing wrong with me. But while I still have a burst of energy I will continue doing things. It is about trying to get a blance and get to know your own limitations.

It 's true what works for one might not work for another. Maybe I will up my fluids but I am pretty good at taking my med.

Liz B

[ArmyMom46]

This has been reassuring. I figured since it seems like many of you have been dealing with the POTS stuff for quite a while, that you were good at taking care of yourselves.

I have tried to do what my EP told me to do, but it's too hot to wear those hot, heavy compression hose. And I have not figured out how to get 1.5 gallons of fluid, even though I always have my Propel and tomato juice with me. Taking the meds isn't a problem for me since I set the alarm on my cell phone to go off every 3 hours so I'll remember the Midodrine. I found out that if I forget it at work, I'll pay for it the rest of the day, and into the next day.

I've been afraid to try the hot baths that I likes so well, since I have frequently had problems getting dizzy in my shower. Thankfully our tub/shower has wide sides so that I can sit down when it gets to be more than I can handle.

I usually win the temp. inside the house argument. My husband and daughter give in to what I need at the moment since they don't want to pick me up off the floor. The upcoming winter will be interesting since I overheat so easily and keep cooling down the house. I remind them that they can put on more clothes than I can take off.

[Michelle Sawicki]

Here's my biggest, baddest thing...(hehe!)

About a year ago my allergies really started acting up. Now we all know allergies can make POTS worse because an allergic reaction leads to histamine release, which leads to vasodilation...blah, blah, blah. Well, I went to my allergist and found out I'm allergic to canaries. This probably wouldn't be a problem for most people, but I am a bird lover from way back and am an avid breeder of canaries. Nothing is cuter then the first fuzzy little heads that pop out of the nests in spring.

My allergist told me I should find homes for the canaries. I agreed....but one week turned into two and two turned into three and I just coudn't part with my little feathered friends. Worse yet, when spring rolled around I paired them up and let them have babies. So now I have even more canaries. Oops.

I take my meds, drink tons of water and try not to overdo it, but those cute little birds are my weakness. I just can't bring myself to part with them.

-Michelle

[Rachel]

My confession: chocolate.

It makes me tachy, but it tastes so good. About once a month I indulge anyway. I just plan to lie in bed then for about 2 hours. Then I'm all back to "normal". It's worth it.

I have difficulty getting enough fluids in, but I'm working on it. I've been drinking about 64 ounces a day, but I really need more.

I also have difficulty remembering my second midodrine dose. It doesn't work very well for me anyway, though, so it doesn't make much of a difference.

[ladyt]

hi..

in my new home i have a bathtub, its ust sitting there teasing me.. my boyfriend are gone for weeks at the time.. And I have promised not to use it whit out him in the room.. I am a big fainter, so i know it would be a risky risky thing.. i hope to get to bath when he gets home.. Its make my body worse but better inn the same time... And if I am icy cold its so good..

But here is the thing i know one should not take hot showers and bath, but I am most of the time very insensitiv to heat in that way.. Like the whater will feel warm to me and very hot for my partner..

My worse "sine" has always been overdoing things and prettending am top top shape...

Keping my living eara hot i dont consider a sin, it works for me.. Its worse for my body to be cold..=)