Not Too Noticeable

[cardiactec]

I am struggling with this alot...... I feel bad for even mentioning this considering i know a lot of people have a hard time just as it is SIMPLY being upright, regardless of whether or not movement while being upright helps with their symptoms....

.....I do pretty good while upright if i am moving around, symptoms arent very noticeable.......i think a lot of this is because i just added .3 florinef to my 120mg's of beta blocker every day. i was kinda psyched about how i had been feeling while upright while in constant motion and really thought i could turn a corner here with pursuing some further challenges in my career because of it (by going to work in electrophysiology lab where there's a lot of motionless standing required instead of what i'm doing now, ekg/stress testing where you dont have to stand too long, and arent motionless while standing).....

....yesterday i took on the challenge deliberately to just simply stand, in a quiet room (my bedroom) completely motionless........i marked what time it was when i started to stand in order to try and stand for just 10 minutes....i started my motionless stand (figuring it would be a cake walk because i have been doing so well standing in general while in constant motion)...... i found myself almost in tears as i looked at the clock, finding that only 3 minutes had passed, standing motionless, and i was feeling desperate to either sit or lay down bcuz my head was flying to the clouds. i checked my BP and HR with one of those wrist cuffs at three minutes of being upright and i think it seriously isnt accurate because i was getting 120 HR and 130/80 BP. the 120 HR i believe cuz my rates have been a lot better with the florinef and beta combo, but the 130 systolic i couldnt believe cuz i felt like wacking my head off the floor!

i went into this deliberate challenge for two reasons - one, because i had been doing so well standing while in motion that i figured i could do just as well standing motionless, and two, because i REALLY REALLY REALLY want to work in the electrophysiology lab and that requires a lot of STANDING MOTIONLESS.

i flunked my challenge. i never really used to have issues with feeling like passing out. i always did pretty good upright even though my HR was 200. also, my BP never used to be low (110/60 standing) and before i went on the florinef it was 80/50 SITTING and dropping lower while standing........perhaps the florinef has raised my pressure to 130 and the cuff was accurate ?? but i just find that hard to believe where i was feeling so light-headed and ill.....and those same symptoms i was feeling at 130 systolic is EXACTLY how i felt before adding the florinef and seemingly now have a "normal" bp of 130 registered by the cuff....

kinda bumbed out by this to say the least.....

[kmpower]

Hi, Cardiactec.

How disappointing for you to flunk the challenge. If you feel up to trying it again, maybe test yourself with some of the countermaneuvers -- isometric glut squeezes, alternating leg rocking, crossing legs (yeah, I know, girls cannot do that one in public!), etc.

When I have to stand in line, I am always moving. It distracts me from my tachy plus helps the head a little. I know people here often use the cane-chairs, but I am assuming you cannot sit or you will not be able to see the equipment you are monitoring. What about a barstool, etc.?

OLL

[Tessa]

I am so sorry Cardiactec.

Do you know if the dosis of Florinef is enough for you?

Perhaps you have a different reaction if you try it another day. We feel different some days, you know...

I hope you can find a way to keep up standing.

Love,

Tessa

[bttrflyamby1981]

I agree with OLL, uless you can't move at all even from foot to foot in that line of work?

I know I have side affects from my meds that sometimes seem worse then not taking them? I didn't realize this until I went off them for the TTT.

[cardiactec]

Hi OLL,

i cant work in the electrophysiology lab (i was for a bit, but i cant do it anymore because of the standing factor).. i am now just working ekg/stress/some echo. so it's pretty disappointing.

i have talked with several EP docs about these frustrations and wanting to work with them in EP - unfortunately, even no matter how nice these docs are, none of them have ever suggested to me the thought for pulling up a stool or finding ways to "get around" the pots symptoms and i fear it is because they want someone that can stand there, operate at 100% for them, next to them for as long as need be. they have seen me cry over this, over wanting so badly to be back in ep with them, and they have never once made the suggestion to me of pulling up a stool or sitting during procedures. it cant be done in all reality. ....disabilty discrimination is not the way to go either. i mean, technically, those docs, the people who work in ep, are dealing with very critical risks to the patients wellbeing, and to have someone with disabilities working with them is kind of a burden to the team - AND the patient. i hate to admit that, but it is true. patients wellbeing comes before my own , and if i cant have a sense of "wellbeing" in working in the EP lab, than i probably shouldnt be in the lab......

i just never thought that i could feel THIS extreme, just from standing motionless. i am ALMOST completely normal feeling if i am moving around and dont stop, but as i learned yesterday, the second i stand still and motionless, i get sick, REALLY sick. does anyone else deal with this? do you feel okay while up and moving and then go to the other extreme of feeling very very ill if you stand motionless? usually i have just heard of people feeling ill overall while upright, whether or not they are motionless or moving ..............

[Rachel]

I'm so sorry it didn't work for you, Angela. I know that's got to be so disappointing as you really want to do the electrophysiology lab.

Do you think some counter maneuvers would work like OLL suggested? When you were standing for the three minutes did you have your legs "locked"? If so, maybe standing with your knees just ever so slightly bent would help. That way you have a bit more muscle flexed to help the blood flow.

I know it looks silly, but back when I could go out without a wheelchair I would stand with my legs crossed. It was either that or get nauseous, dizzy, and fall down. So I just crossed my legs.

Do you wear compression stockings? You might not need them while walking around, but they could help you a lot to stand in one place.

Would a seat cane work? Or do you need to be higher than that?

I don't know if any of these suggestions would work or not. But I really want you to be able to do the electrophysiology lab. I know you'd love it so much. I hope that you can find a solution.

Best wishes,

Rachel

[cardiactec]

amby, you bring up a good point. sometimes i wonder if the mega dose of beta blocker i'm on is actually CAUSING potsy symptoms moreso than the actual pots/auto dys symptoms themselves.........interesting point.

and it is really interesting that i am not too bad symptom wise in the a.m. when i get up. but after about 2 hours having taken all my meds in the morning, and with standing, i get worse. ??? so perhaps it could be the beta making me feel like that and not necessarily the pots..........i guess there's really only one way to find out, and that is to go off meds.........i cant do that right now though because i think i'd feel worse off meds (but not in the sense of feeling like passing out, more or less with dealing with fatigue/tremor)............the passing out sensation, i am starting to question more and more, as being caused from the beta and not true pots symptoms........when i was off meds and my HR was 200, i never felt like passing out. i have been on beta for 4 years now and over the past 4 years the pre-syncopal sensations have been coming on a lot............beta or no beta, that is the question!

[cardiactec]

hi rachel,

thanks for the suggestions. i have tried compression hose before, and it doesnt really help all that much. if anything, especially in the hospital where it is "go go go" a lot, they make me very hot and sweaty feeling which triggers the nausea and light-headedness and tachy even more.......... (

when i stood for 3 minutes motionless yesterday, i didnt have my knees locked, just stood still and i couldnt believe how sick i was feeling after three minutes because i dont get like that if i am moving while upright, actually i can stand for a good hour if i am moving....this is why i thought that 10 minutes of being still while upright wouldnt be a problem, and it was.......... ( they do a lot of still/motionless standing in EP and to top it off, to make it even worse, they have to wear protective lead that is about 8 pounds of extra weight added on to you...... tough and rough, even with people who dont have pots/auto dys...........

thanks for your suggestions though....

i hope you got everything settled with the facility you were having problems with and/or that you found somewhere else to go that can help with all of what YOU are going through.

take care.

[Rachel]

Cardiactec,

I guess I was posting while you were too. So you can probably ignore most of my last post.

I'm sorry things have to go this way for you.

Yes, I feel MUCH more sick if I stand motionless. During my ttt I actually thought I was going to throw up because the nausea got so bad. Walking around (when I can actually do it) is easier than standing still. But standing still with support hose is much easier (and less nauseating) than without.

Rachel

[cardiactec]

hey tessa,

i am on .3mg's florinef a day.....i have been on that dosage for about a month and a half.....it's a pretty hefty dose but i think there was someone on this site that said they were on .16mg's of florinef a day or some crazy number like that ! so if they can be on that much, than perhaps i should see if the doc can increase the dosage for me.... ?

i am not really understanding why i felt so cruddy when my BP was 130 systolic?? i totally expected it to be quite low, but the reading said otherwise..........

[pat57]

prodomal (?) symptoms are felt before the bp crash with NCS.

[runningshoe]

Hi,

I am like you - I can't stand still. I would go to the dr office feeling okay and he would have me stand for less than a minute and I would reach point where I would have to grab something to hold me up. I know it stinks. Try to focus on what you can do but allow yourself to mourn for what you can't do. My dr says that beta's can make things worse for some people. I am on .4 florinef - I think that is the highest allowed. I have high bp and it seems to be getting higher. Hang in there!

[Guest tearose]

I think we have symptoms that are not always measurable "in the moment". It doesn't mean you wouldn't have eventually passed out. Just you didn't "capture" the early signs of the chain of events.

[the_dancer_grl]

i do the same thing, movement helps me...maybe b/c it forces blood movement in the lower extremities so less blood pooling??? anyone know the real reason?

[mkoven]

I posted b4 about training myself to stand still under "tilt training." I got to where I could stand for 15 minutes, but only by adding 30 seconds every several days. At first I made it a minute. It may or may not help to try to start with a much briefer time??? three minutes may not sound like much, but may be too much to start with?

I had to quit the tilt training because my hips can't stand static standing. But I still feel better than before I started the stand practices--so it has lasted.

[yogini]

Hi Cardiactec,

One thing that I am encouraged about by your post is that you have only been taking florinef for 1 1/2 months. This probably seems like a long time for you, but it actually isn't. My experience with meds is that they take a while to settle in and get the full benefits - especially with a steriod such as florinef. And once you start feeling better, you can maybe do some exercise, and then start feeling even better, etc., etc. It took me two years before I really started feeling better. So I would not rule out working in the job you want in the future. Maybe it'll be a year or two down the road that you can do this.

In terms of your job, did you come out and ask them whether you could do it seated? I have a hard time asking for what I need to. One of my friends at work is about 20 years older than me, and I asked her for advice when I needed my own accomodations at work. I think women in particular have a hard time speaking up and aksing for what they need. They might turn you down, but, who knows, the respose could also be much better than you expected.

I hope things work out for you the way you want in the long run.

-Rita

P.S. 0.3 is a pretty high dose of florinef. I do think that 0.4 is the highest. 0.3 is more than 0.16 - about twice as much! Glad it's working for you, though.

[Sunfish]

hi cardiac -

a few thoughts to add...

it seems like you were/are implying or thinking this yourself, but i wouldn't think that it's really a good idea to have to rely on countermaneuvers extensively when truly in a job that involves long periods of standing still and someone else's health. BUT - as others have said - that doesn't mean it will be the reality forever. things may change and there's no way to know.

it sounds like you do have a few things to pursue at some point though to assure yourself that the balance of meds your on is helping rather than hurting things. it can be tricky and is often an ongoing and sometimes exhausting process to do so, but can definitely be worth it.

and i can definitley relate to the disappointment in not being able to pursue. i was headed toward a career in medicine many years back - when i was lightyears more functional/healthy than i am now - and came to the realization that it wasn't a realistic pursuit for me. physically i simply wouldn't have been able to handle the physical demands of training for any field of clinical medicine. i gave medical social work as i also had/have a passion for patient advocacy and if i'd physically been able to continue working or schooling do think that i would have enjoyed that career thoroughly. so you may discover something else related to your interests that catches your fancy at some point.

last but not least, several years ago i was similar physically in terms of my ability to keep moving for quite some time while quite unable to stand entirely still hardly at all. i'm more severely limited now, but there was a time when i could walk or run for miles but couldn't stand still comfortably for more than a few minutes. a lot of moving around in place helped extend my "still" time but it was still limited. i taught myself countermaneuvers long before the ANS docs were extolling their value; my body just figured them out naturally as a survival mechanism. i was even able to creatively sing in choirs where a lot of movement was involved (gospel) but never would have been able to stand still for a song or two. even now i move my legs/feet/body around a lot when seated b/c it allows me to stay up a bit longer.

so you're definitely not unique in the extreme difference you noticed between standing still and being upright when moving around. i'd now LOVE to be back at that level of functioning, but at the same time i still remember how tough it was to manage in the "real world" of work when having to always be on the move.

melissa

[cardiactec]

hey rita,

thanks for writing! lol, oh my, my math skills are HORRIBLE - .16 mgs, .3 mgs, .16 being less than .3! ? lol! maybe i meant 1.6?? haha, i dont know. i hate numbers and decimal points get me every time! haha. yeah, .3 mg's is pretty high of a dose, and i think you are right to say "give it some time"....

..if one thing i have noticed, for the better, with florinef, is that the pre-syncopal episodes arent as frequent. but the thing that is worrisome with being on the florinef as opposed to before (without florinef), is i find that the escalation of pre-syncopal symptoms/sensations is more abrupt than gradual (abrupt with being on florinef, as opposed to before being on florinef the pre-syncopal symptoms were more gradual in escalation and could give me some further warning/time to get seated)........now it is i go from feeling fine to WHAM, 10 seconds to get down or, like someone else said here on the forum, "my body will do it for me"! .........

..isnt that strange? do you, anyone else get this on florinef?? i liked the somewhat "advanced notice" my body was giving me before taking florinef. now the warning is only about 15 seconds, instead of 5 minutes.....

thanks so much for the encouragement, believing i'll turn a corner and will be able to work in EP. lol, funny you mentioned ASKING the docs about being seated - i didnt actually come right out and ask them, mainly for reasons you mentioned, have a hard time doing that. perhaps that is a good idea, to see what they say....

[MomtoGiuliana]

If this is any hope for you, my symptoms are overall a great deal better than when first diagnosed 4 years ago. I have days or weeks of relapse, but nothing ever gets as bad as it was back then. I can usually stand for an hour or more with no significant problems. I am still on medications and my life is not predictable, but generally, if I had to, I could work standing up most days if needed. I think you may just have to be patient and hopeful that with time you will improve. Let's see where you are by this time next year!

Katherine

[flop]

Cardiactec,

I am writing you a pm which I will eventually send (sorry it is way too long to post on here).

My dose of Fludrocortisone was very slowly titrated up 0.05mg for 2/52, 0.1mg for 2/52 and so on until I reached 0.3mg daily. Before the fludro I had no warning at all of an impending collapse, the first thing I knew was coming round on the floor. As the fludro kicked in I started to get warnings which got longer and usually allowed me to avoid true syncope.

My cardio advocates 0.3mg as the top dose for fludro but also says that it takes months to gradually take effect. Also you need to ensure that you are taking plenty of fluids and sodium for it to work (it can't hold on to stuff that isn't there to start with).

Take care and give the fludro time to work before deciding about EP.

Flop

[flop]

Cardiactec - you have a PM, sorry it is so long!

flop