Question For Those Who Don't Faint

[puppylove]

Do you use a wheel chair/ scooter/ seat etc. in general or when your out or just when you are doing a lot of walking? Lately I have been trying to push through feeling bad and go out more. I have never fainted, even when I walked around the zoo for six hours last week. I just feel worse and worse and worse. In lots of situations I could sit ( using the scooters at the grocery, using public wheel chairs at the zoo, sitting while everyone stands at church etc.) but I don't because I feel to guilty like I can just suck it up since I don't actually pass out. But I often feel terrible during/ after. I know I have read about scooters and things before but a lot of those were from people who faint which is obviously a safety hazard. So what is your guy's take on this?

[POTLUCK]

Hey, you did manage to do the zoo thing, congradulations!

I have been finding many people seem to have a different set of symptoms. For me I do not notice a lot of tiredness with reasonable amounts of exercise ( meaning what I could do before POTS minus out of shape from POTS some ) I have a lot of fatigue and it is hard to get myself going. My walking heart rate is lower than standing, so I think the Circulation is helping.

do not like the idea of giving advice as it is tricky, but my thought is exercise is mostly thought to be good for POTS so when posssible I would go with the exercise, rather than a scooter. Again with family, doctors involved, as I do not know all the facts for you.

But glad you went to zoo! I always liked the tigers, black ones ( ? panther) best.

[JenLR]

I am just recovering from a period where I was in a wheelchair for about 4 months. I was having constant presyncope that lasted for months, so if I had to go somewhere, then I used a wheelchair. This was very weird for me. It was kind of hard to get used to people looking at you differently, but the wheelchair helped, so I used it. Now that I am finally feeling better and am able to walk more, I am not using a wheelchair. I tend to avoid the places where I don't feel like I can walk around easily, like big department stores or walmart.

I think that's great that you're trying to get out there more and do the things that you enjoy. But I also think that you should be as comfortable as possible while you're doing those things. Try riding a scooter, if you think it will allow you to enjoy what you're doing more. Or maybe just pace yourself when you go to the zoo. Plan ahead of time that you will only be able to spend 3 hours there, instead of 6. For me, I am just starting to be able to shop occasionally. I usually just go to one store now, instead of trying to go to many places all in the same afternoon. That way I can still get out and have fun, without making myself miserable.

[Frugalmama]

I think this might depend on the severity of your symptoms? I have almost constant presyncope, but I have no doubt that when I get that "I need to sit/lie down right NOW" feeling, if I continued to stay upright, I'd hit the turf. I've had many close calls where I've "greyed out", and just barely made it to the floor on my own....the scariest one was when I was carrying our youngest as a newborn. But, if you don't pass out, exercise is a good thing, in moderation . Maybe stick to a shorter time walking around and see how that goes?

[Dizzysillyak]

It really just depends on how you feel sitting. If using a cart allows you to get out more and be more

sociable then I'd use one. I was 34 years young, when I became ill and had a motorized cart of my own by the time

I was 36. I hated it but I needed it to get out with my 4 year old daughter. These are much nicer

than the ones in the stores.

After changing my diet, I could walk again so I didn't need these anymore. I probably had gluten ataxia. My problem is that I get fuzzy headed quickly and will get petite mals and sob when I've been upright for too long. And sitting up doesn't help this. Only laying down corrects this.

I avoid many more activities than I want to. Not being able to think is very embarrassing for me. And petite

mals at the wrong time can be dangerous.

I've found that eating every 30 or so minutes helps me when I'm running errands or exercising. Eating a tangerine

is working for me nowadays. I just started walking for an hour at a time and noticed that if I eat a tangerine beforehand and 30 minutes into

the walk and I feel better mentally and physically. I seem to need additional glucose when I'm active.

Tc .. D

[Monstrosity]

I'm with Potluck I dont want to give you bad advice, but here's what I do. I push and push and when I feel the presyncope hitting hard I sit or lie down for a few. My cardiologist told me exercise and movement is how I will beat this. I've never passed out and never used a wheelchair or walker. As others stated do whatever makes you feel the most comfortable. I'm too stubborn when it comes to help at times and have a very hard time accepting limitations.

[songcanary]

I have always been one to push myself to the limit. So I had to learn to be a little nicer to myself. And it really helped me. I do feel that the right form of exercise was what helped me get better, but I went slowly and as soon as I felt the least bit nauseous or lightheaded, I stopped and tried later. That even applied to shopping etc.

I cannot tell you how many times I went somewhere only to turn around and go back home. That was actually the tricky part; knowing how to read my body's signals--it had been brain dead. Two years later I am much improved. I think my body actually thanked me when I stopped punishing it! So my motto is push a little bit, rest a lot. Rinse and repeat LOL.

[Hoosierfan]

I'll echo everyone else's comments -- push but don't push too hard. When I push too hard and get presyncope (I don't faint), I also get really emotionally upset (this SHOULDN'T be happening, LOL!!), so I've learned to try and push through the "bad" feeling, but just enough to keep me active until I get to feeling better. That seems to be the best balance for me physically and emotionally. And, yes, "Rinse and Repeat!"

[mwise]

I agree with the others too regarding their comments. It is a personal choice and you got to do what is best for you for what ever you are doing. I push myself too and try to go without using anything most of the time and pay dearly when I don't. I decided I would use my rollator walker when I am out and going for distances so if I need to sit cause I feel fatigued and tired I can. It has made my life more worthwhile by being out in the world enjoying life again. Good luck with what ever you decide, but enjoy life and so happy you went to the zoo. I like the lions and tigers too.

[Lemons2lemonade]

One thing to remember is that the body atrophies without exercise and reduces cardiovascular capacity. So, not exercising is not going to make exercising any easier. If you take any healthy person and lay them down in bed for a week, they are going to have lots of issues. My physiology professor did an experiment like this and they had to physically rehab the test subjects so they could leave. I've decided that I am going to push until I faint, and I haven't fainted yet, instead my symptoms have gotten much better and I am becoming more active and strong. Still though, I had to work myself into it. You won't catch me walking around for 6 hrs! One to two is a good feat I think. The one concern I have for supportive devices is the overall effect in the long run. I'm sure sitting in a wheelchair would make me feel better now, but it is not going to do anything positive towards making my body more normally physically functional. If anything, I feel like sitting all the time makes it worse. Maybe you could bring the wheelchair but only use it when you get tired instead of solely relying on it and try to use it less and less.

[puppylove]

Thanks guys! It's so hard to find a happy medium because at first all I did was sit at home and of course that didn't get me anywhere. Then I just thought I can't let POTS control my life so I pretended like I dont have it which isn't a good idea either... I guess it's all about learning to find a balance. I love the lions!! My sister is photographer and she got one up close of a lion yawning and it looks like he is roaring!

[jenglynn]

I wonder how this method works for some, like Lemons, yet not others- like me. After almost a year in this flare I decided about 2 months ago-. That is IT! I'm standing, walking, living "normally" until I DO faint. I've been exercising all along- leg strengthening with weights in bed, arm exercising with resistance bands, and supervised recumbent bike every day- plus home PT 3 x a week. The doctors are always very shocked at the good shape and tone of my muscles-considering I had been bedbound since Nov.

OMG- before I start my rant- LEMONS- I have to preface and say this is NO way personal toward you! PLEASE know this isnt about you personally- i used your name as an example because you have done amazing. I know you STILL feel icky but you are taking your life back- i admire that so much!!!!! You are not letting this win or beat you-- where as I feel like it is kicking my ****--day after day!!!!!!!! Every single time I try- I can never get beyond 30 seconds to 1 min. standing. I sit up first- let my body get used to it... Always get pre- syncope and sometimes actual syncope while sitting. In fact, on Friday I had syncope at my doctors appt in my wheelchair. Hubby said head just fell to the desk and slid out if the chair. I have tried gradually raising myself with pillows to slowly get my body adjusted to gravity (I've done this 20x or more and always take at least an hour to do it yet have never had success). I try 5x a day- every day- to stand with Rob (husband) right there right next to my bed. So far - all of those times- longest I've stayed conscious was 1 min. about a month ago. Usually 30-45 seconds, I'm down. My BP gets pretty low. We can never read it on our home monitor- it won't puck it up- but at hospitals it will be 40/20 or lower Ith 180+ pulse. I had an appt. with my neuro yesterday and be told me to stop trying. I'm unnecessarily causing syncope and lack of oxygen to brain and now it's taking longer and longer for me to wake up- 3 -5 min where it used to be 1-2 min. I just am at a loss now. If I stop trying- I will never improve-but the trying is not helping and my other autonomic systems are a lot worse: bladder function, adrenal surges, headaches... And I have had 10+ concussions and my neuro tells me every time I see that has GOT to be a priority! Avoiding anymore head trauma. No one has an answer for me- just a big long list of things I can't do!!! I know it is complicated and we all respond differently... Another appt. on Thurs. for another "We've never seen anyone like you- can parade you around to our students and residents?' Sure!!!! Maybe one if THEM will have my miracle. What on earth do I try next?????????????

Edited April 11, 2012 by corina

[martiz]

This is a difficult balance to achieve. You may get it right some days and other days you may not. If not, then start again tomorrow.

Personally, being as active as possible is great physically and mentally. Being embarrassed to use walking aids is fine but if it means you are sitting at home alone, then its not fine. If using walking aids gets you out and about living life, then do it!

I would rather use walking aids while out and about even if it meant sitting in a wheelchair the whole time I was out. And my exercise time as a concentrated, controlled-environment activity with everything I need to remain safe. You can do both - it doesn't have to be one or the other. Using aids while out and with friends means you can stay out longer, can participate more fully, means you don't crash when you get home or the next day. It can lift your spirits and helps to motivate you to exercise at home or at the gym. Win-win!

Jen - unfortunately, we are all different and the issues facing puppylove and lemons is not the same as the issues you are facing. Push and strive in the amount that is right for you. Don't take someone else's "push through" attitude and apply it to your body. Head concussions are a serious thing. Lack of oxygen to the brain is a serious thing. I don't know what the answer is for you - it may take a while to find the answer. I know you know all of this and I wish I could help you. I hope and pray that you will find some answers on Thursday. Hang in there!

Marti

[blinkofani]

I don't faint but start to feel pretty woozy after standing for a while and lights in stores make it worse. When my tachycardia was at its worse I got a prescription for a walker with a seat and wheels and my insurance covered most of the cost. I'm 25 years old and it is certainly strange to use out in public with people looking at you. It did help me though because I always had somewhere to sit right away if I needed to. I also have a handicap placard so that I don't waste all of my energy getting IN to the store before even starting to walk around.

[Gracefulprincess]

along with having neurocardiogenic syncope and Pots, i also have other severe neurological issues that effect my muscles,and my legs. So if i'm having a day where i've been feeling weak, and i have to go out to a store i used the electric carts they have. If it's just a in and out of the store situation, i just try to be quick. Ive been using a cane for 2 years because of the neuro issues, and it took a long time for me to get used to that. You dont expect to see a 33 yr old using a cane or one of those carts...so i do get some looks. but usually everyone who works at the store has always been super nice and helpful. All i can say to you is, do what you need to do. I agree with most people, push yourself when you feel you can, but don't push yourself too much. Only you know your limits.

[McKenzie]

We went to the zoo too! Luckily they had benches scattered throughout the walking paths which helped immensely! We stopped for groceries on the way home, but I was way too far gone to walk through a store by that point, so I used a cart. It is amazing the looks I get, because I look fine.

I normally have pre-syncope and start feeling worse and worse the longer I'm up. Walking isn't too much of a problem as long as I can rest when I'm done. What I can't do is stand. After shopping for a while, so I'm already worn out, by the time I get to the checkout it's hard to stand in line for 20 minutes. By the time I get out of there, I feel like I'm not even going to make it to the car let alone safe to drive home.

I am going to get a "sit-cane" It's a cane I can hang on a shopping cart and it folds out to a tri-pod with a seat so I can sit anywhere. They only cost about $30 - $40.

One other thing I'd like to share. I agree that excercise is helpful to build up your stamina and in some cases ease your symptoms. However, I also believe that Adrenal Burnout is the cause of some of our symptoms and if that's the case, then rest is the best thing. Pushing and pushing beyond your comfort level only sets you back. I know that if I push myself too hard, it will set me back and take 2-3 days to recover. The inability to recover is a sign of adrenals that aren't working well. We all have to listen closely to our bodies and do what is necessary to improve. I walked when I feel well, but if I don't feel well, I won't push it.

[songcanary]

McKenzie,

I am so glad you brought up the adrenals because I had that. It was awful. I was far too weak to do even simple things around the house let alone exercise. I stopped working and completely rested for nearly a year. I could not get my doctor to take me seriously but thankfully a friend of mine who is an integrative MD suggested the possibility of an adrenal problem.

Now I am able to work again and feel so much better. But if I hadn't rested none of that would be happening. You brought up a very good point, thank you.

[bellgirl]

After reading all of these answers, it is plain to see that there are so many levels to this illness...I think it is wonderful that you can spend 6 hours at the zoo. I love animals, too. I used to be the energizer bunny, but I have learned through totally crashing and (almost crashing my car), that I need to listen to my body and know my limits. On a good day, my limit for being out is 2 hours. I sat on an overturned bucket at Lowes shopping with my husband the other day, after finding lawn chairs twice to sit in before that...it was not a good day, and I shouldn't have insisted on going to buy spring flowers. My doctor always tells me I should never push myself to exhaustion, but I try to be as active as I can. Some days I have to stay home, some days I can go to the grocery, some days I go to the doctor (I'm tired of this one), other days I go to the YMCA to exercise for 45 minutes, usually twice a week, some days I walk my dog short distances, some days I go to choir and sing (Love this one). You do what is best for you!!

[McKenzie]

Thank you SongCanary for your kind words. I am fortunate enough to have a practitioner of Health, Longevity and Renewal. They are very wise and have taught me much. I have found that even when I have a really good day and do normal things because I can keep going, I pay the price the next day because my body just doesn't recover like it should due to the adrenals.

[McKenzie]

@Kimbellgirl, you are fortunate you can sing. I love to sing in the choir, but singing, especially standing and singing burns me out FAST! I get lightheaded and have to sit or lay down and I usually end up with a migraine for the rest of the day:(. I'm still trying to recover from singing ar Easter services Sunday!

Sing one for me please!

[POTLUCK]

McKenzie,

I am so glad you brought up the adrenals because I had that. It was awful. I was far too weak to do even simple things around the house let alone exercise. I stopped working and completely rested for nearly a year. I could not get my doctor to take me seriously but thankfully a friend of mine who is an integrative MD suggested the possibility of an adrenal problem.

Now I am able to work again and feel so much better. But if I hadn't rested none of that would be happening. You brought up a very good point, thank you.

What is an integrative MD? I was thinking I needed a diagnostic MD like the TV show House but found out they do not exist for real.

[martiz]

What is an integrative MD? I was thinking I needed a diagnostic MD like the TV show House but found out they do not exist for real.

The last part of your sentence made me laugh - you're right, most docs are not diagnosticians!

I see an integrative doc (a couple). They are open to alternative medicine (not incense and weird stuff) - there are a slew of tests that are not covered by insurance (unfortunately) but are very telling. They also do mainstream medicine. Google integrative doc or find a compounding pharmacy and ask them who in the area is an integrative doctor.

They are getting easier to find but you still have to look. You will not find them in big HMO type medical chains like Kelsey-Seybold or Sadler Clinic (don't know any other big chains). They usually are in private practice or hooked up with one or two other docs.

A good health food store might be another place to find some names then you can research them.

Marti

[bellgirl]

@Kimbellgirl, you are fortunate you can sing. I love to sing in the choir, but singing, especially standing and singing burns me out FAST! I get lightheaded and have to sit or lay down and I usually end up with a migraine for the rest of the day:(. I'm still trying to recover from singing ar Easter services Sunday!

Sing one for me please!

God knows I love to sing, and I manage to get up there because He gives me the strength to do it, but I'm exhausted afterwards, and Mondays are my rest days; used to be the day I cleaned. Oh well, dust bunnies are my friends!!

[POTLUCK]

Thanks for info. on integrative medicine. I did look, quick for now, more later. Andrew Weil, M.D. also came up and I have heard his name before also.

[McKenzie]

@Marti, great advice to look for a compounding pharmacy and ask them who to go to. I actually get 3 medications from my compounding pharmacy, T3/T4, Low Dose Naltrexone and progesterone cream. Don't know what I would have done without them. The physician who orders the meds for me comes to my chiropractors office twice a month. It may take some work to find a natural practitioner in your area, but it will be well worth it.