I'm Down All Day Long

[john redman]

I can't sit or stand. I'm down in a Laz-Y-Boy chair, reclining all day, or in bed. That's how I live. When I get up my lightheadedness gets worse and worse and I get a headache. It's like when I stand or sit the water level in my brain drops and my headache is above that waterline. It really really stinks to be me. Why, oh why?

John

[wareagle]

Hi John...I know how you feel...I was like that a lot in the beginning...still have those days but usually not ALL day..so take comfort in knowing that it DOES get better.

I think that you are still going through the dx. process and recently started Florinef? You may want to try some compression while your waiting for the meds to bring you some relief...lots of people here find compression hose and/or abdominal binders helpful....it may help with the light headedness and allow you to be upright a bit more.

I hope your feeling better soon.

PS. If you are on Florinef it could be contributing to the headaches...maybe talk to your doc. about going to a lower dose? I'm only able to tolerate 1/4 a tab every day...not much but it does help a little.

[Guest dionna]

i feel the same way you do with the headaches. i use neurotin and advil migraine for mine. some times it works but other times not. usually it hurts worse upon standing and then i just re-adjust myself for a moment or so and it isn't AS painful. i agree about the florinef as well. that is why i stopped taking it but i would suggest trying a lower dose or maybe something for headaches or migraines first. good luck to you and know that you are not alone.

dionna

[BEE]

Just wanted to pipe in and say I am sorry for your misfortune going on..I was quite bed-couch ridden for some time. . I hope your body helps regulate itself..look into the florinef I know for me that gives me headaches upon standing and such. I am on a larger amount and there is a correlation with me.

Keep your head up J.

Bee

[Dizzy Dame]

I was bedridden for the first 6 months of my illness, but now I'm much more active. So keep hope that you'll improve with time. In the meantime, have you tried different medications that could help you? Have you been to see an autonimic specialist who may be able to give you a good diagnosis?

Many of us have been where you've been before, so you know you're in good company here. I hope things start improving for you soon

[kholdefer]

I'm so sorry you're going through this. It ***** to be bedridden. I was that way for a long time, and I eventually wanted to through the TV out the window. I think when your meds start working better, you'll be able to get up and around more so that your body can try to adjust. I hope you feel better soon.

Kady

[john redman]

Wow, it's nice to hear that people actually get better with time! I thought it was going to get worse with time. I'm still struggling to get a diagnosis and see for sure what is wrong.

I'll be traveling to a Dysautonomic clinic next month. And, be seeing other docs as well.

Thanks,

John

[persephone]

Most of us have been where you are now, John. I know I have. But most of us experience remissions too- things CAN get better! Hang in there. Keep the faith.

[Kitsakatsa]

John:

I'm echoing what others have said here. I went from a little sick to bedridden and then slowly better. I know that each patient is different and even though we have similar trials; everyone is different. However, if it helps to know. I went from unable to perform a task for more than 20 seconds and unable to watch TV, have any noise around me whatsoever, and unable to be in a sitting position to leading a somewhat normal life with the right modifications and conservatism.

My prayer for you is that you will also progress as many of us have. It was just a little improvement month by month. Everything is in baby steps. Hang in there. Life was pretty grim to me then, but it is so much worth it now. My wish is that you will get there sooner than later.

Kits