Standing Still? or Still Standing?

[migraine]

My Catholoic church announced a few months ago that we would not be doing the whole sit, stand, kneel, stand thing. (I think it was some sort of Pope decision throughout all Catholic churches.) Instead, a little after the Gospel we stand for basically the rest of the service (1/2 Hour). I do fine walking or in motion, and usually sway through the songs...but standing for that long makes me feel like I'm going to pass out and makes me sick! (Hence my tilt-table failure.)

It's not just me, I see little old ladies dropping like flies throughout the service. The problem is I'm not an old lady. I'm 32 and I feel like everyone is staring at me when I end up sitting down. I feel like I owe the church an explanation or something even though the big guy knows what I'm doing. Should I write a letter or something?

This happens not just in church but other places as well. When my kids are outside playing, neighbors usually stand around chatting. I usually have to ask for a chair or bring one with me. While chatting at work or in any social situation I am constantly looking for a chair. Forget attending any type of standing room only event. I usually kick small children and teenagers out of chairs at the mall or family events. I feel terrible, but I really must sit down. My husband gets so embarrased.

My husband teaches guitar lessons. At his students' recital I left my coat on my chair to take one of my girls to the bathroom. When I came back a parent was sitting in my chair. I had to ask her to move and I know she was very upset. It was this sudden onset of anxiety and the urgent need to sit down! How weird!

So my question is what do you say? No one knows what POTS is. Do you say you have a cardiac condition?

[justme]

Could be cardiac, POTS or something else or a combo. You need to talk to your doctor. Typically, a drops in blood pressure and heart rates can cause blackout situations.

What was the reason for you failing your tilt table? Do you have NCS? If so, that can cause you to pass out as well.

[migraine]

Hmmmm, I can't remember an exact reason for failing the tilt table. They just said, "Yup, you failed, it's definately POTS but we'll fix you up." What is NCS?

[MomtoGiuliana]

I have POTS. If I need to give someone a super short explanation of my condition, I often say I have a cardiac condition, even though it's not really accurate, I guess. I also sometimes say I have an electrophysiological/neurological condition. Isn't it horrible when we feel we have to explain ourselves?

I understand your issue with standing. I can stand still for longer periods now than I could, but I have some days better than others. I have a job where I have to stand for hearings, etc. in front of County Commissioners. I have this fear still that I will start to feel faint and really embarass myself. Do you find that standing in certain positions helps--like leaning forward and holding on to something (like the back of a chair), standing with one leg slack, leaning against a wall? These help me often to stand for longer periods, and are less conspicuous than sitting down.

Katherine

[goldicedance]

I know how difficult it is to stand in one place. I experience the same sort of thing that you do when standing. I try standing with my legs crossed, that helps for a bit. Most times, I sit down even when others are standing, even at religious services. Waiting in lines is terribly difficult for me. My internist suggests that I get one of those canes that has a pot-up seat. Gosh, I really feel old.

I have my wonderful husband do all the waiting in line. At home, when I need to prepare meals, I frequently do the job at the kitchen table because standing in one place does me in.

Oh well, its good to have other people to chat with who are in the same predicament as me. Know that we are not alone.

Feel better!

[justme]

My wife failed a TTT twice and both times her heart stopped. After the second time, they immediately admitted her and implanted a pacemaker the following day.

There is actually information on NCS on this site. It is Neurocardiogenic syncope. A short description is: Neurocardiogenic syncope is a temporary loss of consciousness associated with a drop in arterial blood pressure, quickly followed by a slowed heart rate.

[calypso]

I go to a very traditional Catholic church. I have a newborn, so no one questions you when you sit down. But even if you don't have a baby and you need to sit, I say sit. God will understand. And it's nobody's business otherwise. I've seen too many teenage girls, including myself, pass out in church on hot days and such; it's safer just to sit.

[justme]

I agree with calypso on that point. I was raised Catholic and if you have to sit, I say sit. I now attend a non-denominational church and they actually let everybody know that if you want to sit or need to sit you are welcome to do so. The folks normally stand during the singing portion of the service.

[migraine]

Thanks everyone for your thoughts and ideas. Goldicedance: You triggered such a reaction from me when you mentioned standing in lines. I like to refer to these happenings as my "Drugmart" epidsodes. I realize that no one likes to wait in line, but I feel like I am exceptionally sensitive to it. Not only do I get dizzy, but I start to shake, get sick, and have anxiety issues. It's like blood is literally boiling in my body. I'm not the type to say anything to anyone, but I have visions of pushing people out of my way, throwing money on the counter and leaving.

One of my worst episodes was when a lady in front of me (One line only open) decided to purchase 100 phone cards at Drugmart. Each card had to be rung up separately (She used a credit card) and then run through a scanner separately to add the minutes. I went completely bonkers. I couldn't bring myself to leave because I needed the product I was buying, so I just stood in line and cried. That is officially a POTS related, "Drugmart" episode!

Justme: I'm sure I have some type of syncope. My Grandmother has that and has a pacemaker. She passes out at least once per month. So I must have a genetic POTs. Anyway I have not officially passed out since college (singing in a choir.) I have learned to sway, change positions, and lean on whatever I can find. Occasionally I bend over to get blood to my head. So I have managed to find a little system, but it is still so hard. It's like I'm playing this little video game inside my body an no one around me has a clue what's going on.

This disease is just so hard because it does not appear as an obvious physical disability. During another topic several people commented on having a positive outlook and what phase we are in in accepting this condition. I feel like I've always accepted it and moved on. I just can't seem to get over my perception of myself as someone who makes excuses. Maybe if I just start saying, "Oh, I have a cardiac condition" others will understand and I'll let myself off the hook. Thanks for the advice.

[Louby]

A couple of tips I have learnt, from my Proff and on my POTS journey.

1) Pretend that you are tying your shoelaces - (I have done this in the past, then realised that I had slip on's on)

2) Flight socks or flight tights - they do help to a certain extent

3) Cross your legs, and tighten your thigh muscles - tones and stops you passing out at the same time.

4) rock on your toes and heals, for those who did ballet as a child "good toes, naughty toes"

5) Put your bag on the floor and rummage around it, cursing "I know my ** is/are in here somewhere" you can add the most appropriate product depending on the situation.

Something I find particular difficult is very busy tube trains, (i can be sat waiting at a station for ages, for a less busy train) I was on a particular horrendous tube journey the other day, where there were no seats (amazing because most of them where occupied by young men, if chivalry was still alive and well, at least the girls with POTS would be ok) anyway I am stood there, my boyfriend propping me up as usual... I start to shake, sweat, there was no where to even sit on the floor due to how busy it was. My boyfriend making large comments like "your not going to pass out are you..." (in the hope that someone might catch the picture) The man in front, just starred at me - typical, looking at me like I had just drunk about ten pints. It is incredibly frustrating, but I have been known to sit on the floor if it gets really bad.

The trouble is that these people just don't understand, we look normal, young and healthy, if you had a big bandage on your head, then people would be jumping out the way to help. This at times is a good thing, as we don't have people constantly feeling sorry for us. On the other hand, it really does not help when trying to stand on a tube train...

[Deb]

I don't have as much trouble standing any longer since I have been able to walk and exercise my legs to build up my leg muscles. I do what several of you suggested - crossing my legs and squeezing the muscles, relaxing and then squeezing, doing the squat to examine my shoes, rolling from toes to heels, and wearing unbelievably tight gradual support hose (that cost a small fortune).

I do, however, still have a lot of trouble sitting at my desk at work. I suddenly get very fatigued, my eyesight gets blurry, my head starts to hurt, there is a blunt pain behind my right eye, my hands start to quiver and shake (sometimes my right leg jerks suddenly), and my chest feels like a small elephant is standing on it. My brething is okay, and I usually feel better when I get up and walk, but as soon as I sit down again, the symptoms return. It seems as though the only thing that relieves it is to lie down for awhile.

I was diagonsed with POTS on January 1st of this year after three hospital stays and five ER visits and numerous doctor visits. The neurologists think these symptoms are anxiety and or panic attacks. I think that's totally off the mark. I've been taking Zoloft and now I've been given Xanac to take when I have an episode, but I haven't seen any improvement.

Most of the time the Florinef and Midodrine seem to work well, and I have a very positive attitude. But, when I'm not feeling well it affects my job, and so many other aspects of my life.

Do any of you who have POTS have similar symptoms?

[Louby]

Hello Deb,

you really are at the beginning of your POTS journey, it does get easier as we learn to cope with the changing symptoms. Please believe me it does get easier to cope, I guess we become conditioned to the pains, and the up's and downs.

I work a lot on my computer, and I have certain periods thought the day that are very difficult, I suffer with fatigue (my heart is always pounding away) and I have tired patches for about two hours or so in the afternoon, walking and getting some fresh air helps but when you get back to your desk you feel shattered again.

I am also on florinef and have been told that it struggles to work if you do not drink or eat enough salt. I keep my slat intake up, and always have sachets in my bag. A lady called Tearose, suggested to me electrolyte sachets, as these re-hydrate you. I find if I drink lots of water, take an electrolyte sachet, or drink a sachet of salt in diet coke, that my tolerance for sitting at my desk in front of my computer increases. in my case I don't think it's the sitting, but the concentrating on the bright screen - you can purchase filters for the screen maybe this would help you??

I also try to save some filing or something light for mid afternoon, that gets me away from the screen.

Hope all goes well for you

Louby

[Deb]

Thanks Louby.

I drink a lot, too. I drink about a gallon of water a day, plus what I drink at meals. I goal each day is to drink a pint an hour. I know I need to get more sodium, but that's hard since I don't like many salty foods. I drink tomato juice since it's high in sodium and potassium, and I eat things like sardines, olives, saltine crakers, tuna, and pretzels, but I'm sure that still isn't enough. I started putting a half teaspoon of salt in warm water each morning about six weeks ago and that seemed to help me feel a bit better.

What are the electrolyte sachets you wrote about? I have wondered if I should try to have more salt in the afternoon, but was afraid of too much. My worse time seems to be at 9:30 in the morning. I eat regular meals and drink a quart of water as soon as I wake up (I keep a glass of water by my bed to drink when I take my Midodrine).

Deb

[Aprilmarie52]

deb,

I know what you are going through. Sometimes it seems like nothing that you do is working, but your body is just going through a tough time right now. maybe you should talk to your doctor about putting you on something else. Also florinef can cause anxiety so that might be part of your problem too. I take florief too and I cant sit in a quiet place for to long without feeling like I am going crazy. My heart starts racing and I get clammy palms. Once I get up and walk around for a little I get better but like you said once I sit back down it starts again. Is there any way you could maybe play some relaxing music at your desk. Something to keep your mind off it maybe? Good luck.

[amb]

Deb,

The cardiologist (she specializes in POTS and other cardiac syncope problems) said to try to take at least one teaspoon of salt a day. I bought sea salt because it has more minerals & other things. When I was first dx, I would mix the salt with the water that I was drinking or just lick it off my hand. I did that for several months after I was dx. It seemed to help, but so did the very very small dose of beta blocker. It's been a year now. I don't take the salt like I used to. I just try eating salty things. Also, they told me to drink gatorade or similar product. Now if I am feeling weird, I try drinking gatorade or having something salty.

I used to have those horrible anxiety attacks, even being on anxiety meds, every once in a while. I also have mitral valve prolapse. My pysc dr. said that they have found that people with mitral valve prolapse are more likely to have anxiety/panic disorders.

And now, i found out I have some vestibular (inner ear) disorder. I believe that is a dysautonomia problem. So many things combined make it dificult to figure out which problem is causing what.

When did they start doing the standing thing in church? (I haven't been there in a long time) I always had a problem standing in church, legs would feel like they were going to colapse and sometimes, I would get the anxiety type of reaction- hot flash, dizzy, felt like my heart was going to burst out of my chest. I would have to sit down. I always wondered how these little 80 year old ladies could stand for so long. I realize now that they probably don't have POTS.

[Aprilmarie52]

amb

I also have some kind of inner ear thing. I have to use steroid ear drops every night. If I dont I get very dizzy and disoriented and feel like everything is spinning.

[Ladybug]

I have "failed" the tilt table test twice. So, like you, I also have a hard time standing in the same position for extended periods of time. I'm 21, so when I take a seat instead of letting someone else have it, I'm probably seen as an unrespectful "young" lady. This mostly happens while waiting to be seated at a restaurant (at the bar or in the waiting area). Luckily, my entire family knows and understands my need to sit; but I do feel judged by others waiting ( i.e. why doesn't she let her mother sit?). I have to remind myself that the only people's opinions I care about are those of my family and friends- the ones urging me to sit! My short explanation of POTS to those who don't know me is that I have a chronic illness. If it requires a little more info, I explain that my autonomic nervous system doesn't function correctly, and some of my symptoms are severe headaches, chest pain, nausea and seizures. Its hardest to explain to doctors in the ER, because to some of them, if they have never heard of it, then it must not exist and I'm making it up. The hospital closest to my house told me they could no longer treat me because they thought I was a drug seeker- talk about adding insult to injury!

[denabob]

O.k here's my "uneducated guess "on the standing -sitting -thing It's not necessarily a particular position that's the problem it's more a lack of blood flow when we aren't moving. Standing gets faster results because the blood packs in our legs but sitting without moving also makes it hard for our body to force the blood back to our hearts. My Dr says that with POTS our perifial(sp?) nervous system doesn't work to fight gravity and force the blood back up to the rest of our body. movement helps to keep the circulation going. Of course as we are all aware once it gets to a certain point it's difficult to reversse!

As far as church goes I'm not Catholic so I dont know how different it is but at my church I ask for prayer requests for my health and that lets everyone know why I cant stand for as long.

I sometimes say I have a heart condition when I dont feel the need to go into detail. It is easier than trying to explain POTS or NCS ( I have both) I tell people that my heart and BP dont play nice with each other! When it's someone who is or will be part of life regularly I explain better so that they are prepared when something happens to me. It cuts down on the fear for us both!