Unable To Sit For Any Amount Of Time

[Chrissy]

I spend alot of time reclined or laying down at home, but when I have to go somewhere that I need to sit the adrenaline usually kicks in and allows me to do so. Not anymore. I can't go to church, business converences, even dinner out is a struggle. I'm not sure if its the heart symptoms alone or in combination with the increasing neuropathy issues. I'm beginning to get discouraged. Would anything help me be able to attend such events? I've thought of a reclining wheelchair, but not sure that would even help and I'm kinda trying to exhaust all other options before going there. I have a regular wheelchair that helps sometimes, but not with sitting for more than 90 minutes.

[potsgirl]

Chrissy,

You don't mention any medications you're on. A lot of people take Midodrine for a burst of energy when they really need it. I can relate, especially to the dinners out. I can't go out at all after 5 or 6 pm. If I do an early dinner, at 5:00, I have to make sure I'm home by 7:00 or I'm falling asleep at the table!

Jana

[Chrissy]

I take Nadolol twice a day for my heart, I used to be on Proamatine, but my current dr. was concerned that my h/r was between 130-150. It still feels that high, but the moniters register it being between 90-120. Not sure if its the nadolol or the endocrine issues making my numbers read funny. I've been on many dysautonomia websites and none of them mention nadolol as being a recommended med. I also take reglan, prilosec, and xanex for GI problems and FeC for iron. OTC are coq10, omega 3, and folic acid.

[Broken_Shell]

Chrissy,

I am sorry for what you are going through. Are you feeling lightheaded or having a racing heart as well? Have you tried a combination of midodrine and a beta-blocker when attempting to be upright for longer periods of time? I also have a very hard time being upright and I wish I had more ideas to offer. Hang in there! My prayers are with you If only we could go through the world laying down...

~ Broken_Shell

[Tessa]

Hi

Am I right deducing that they prescribed Nadolol to reduce your heart rate?

What about your blood pressure? Was it high or low before the med?

And now?

Love

Tessa

[Chrissy]

I'm not exactly sure why they prescribed the nadolol, but my hr registers lower now, doesn't feel like it though. Blood pressure was low before, then on nadolol it goes from low to high to low, now it spends most of its time in the prehypertensive range or stage 1 hypertensive. It still bottoms out on occasion though. They think the increased blood pressure is due to the endocrine problems and once that is fixed I'll go back to having low blood pressure.

[futurehope]

Have you been on the Reglan for long? I felt horrible taking it. I'm assuming you have to take it, right? Also, has your beta blocker improved the quality of your life? Are you seeing/feeling any benefit?

Things I have done to improve sitting time:

Any amount of walking exercise you can do can improve you. Do you exercise?

Do you wear compression hose either 20-30 hg or 30-40 hg compression.

Are you able to salt load in the morning like with V-8 juice?

Are you able to tolerate any amount of caffeine like in a chocolate bar? It may help.

Get up early enough so your body has time to adjust to the sitting - this may or may not help.

Wherever you are, see if there is a place where you can put your feet up. If not, can you lean forward onto your hands which you can rest on your knees.

If you start feeling too weird, get up and walk some.

The above are things I have done. If I think of something else I will let you know.

I totally understand how difficult sitting can be as I have the same problem. Sitting or standing are difficult for me.

[mountain girl]

I spend alot of time reclined or laying down at home, but when I have to go somewhere that I need to sit the adrenaline usually kicks in and allows me to do so. Not anymore. I can't go to church, business converences, even dinner out is a struggle. I'm not sure if its the heart symptoms alone or in combination with the increasing neuropathy issues. I'm beginning to get discouraged. Would anything help me be able to attend such events? I've thought of a reclining wheelchair, but not sure that would even help and I'm kinda trying to exhaust all other options before going there. I have a regular wheelchair that helps sometimes, but not with sitting for more than 90 minutes.

[bjt22]

I can have difficulties with sitting for longer periods of time as well. I've found compression garments to be fairly helpful for this. Nothing elaborate, but a one piece lycra undergarment can be quite comfortable and it does offer some help in keeping at least SOME of my blood in my upper body. Ofcourse, sometimes I still have other symptoms, but it can make it more bearable.

[mountain girl]

Are you newly diagnosed? I know when I was newly diagnosed, it seemed I had to "conserve" my energy just to work, and when at home I felt more comfortable laying down or reclining, so I know how frustrating it can be. I am on a beta blocker Bystolic which is fairly new and it mostly has kept my heart rate down, and I take Florinef which is supposed to help my body retain the fluid it needs for good blood flow and circulation and keep blood pressure from going to low. As for what may help you with being able to be up longer to attend things, I find I just have some days that are better than others as far as how I feel and how much I can tolerate. For me, they are just unpredictable, and that used to upset me, but now I just try to appreciate the good days. I hope you too have some good days. Since I don't have the neurpathy, I don't know how that affects your condition. I also drink 64 oz. of Gatorade a day for the sodium content to help keep my blood pressure up to normal.