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How Long Does A "pots Hole" Last For You?


DSM3KIDZ
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I feel like crud on a daily basis lately but when I get real sick with POTs and gastroparesis I am in bed or homebound for about 2 weeks each time. Sometimes a few days less and sometimes more. This happens every couple of weeks no reason and no known triggers. I don't know if this is normal for us or do I have something more going on?

I really feel I would be able to handle this illness better (family wise) if I could get these episodes to be shorter. Am I alone in this? I'm under the impression most of you have good days and bad days. I have ok periods and bad periods.

Does anyone else experience this?

Dayna

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I had similar crashes every month that lasted for about 11 days. I'd be bed bound, and even needed help getting to and from the bathroom. Eventually I figured out that it was my period causing it. I'd be sick for about 6 days before it would start, then for the duration of my menses. I recently stopped my periods, and I've improved dramatically. I've only had two really bad days this month (as opposed to the normal 11).

Could your crashes be related to your cycle?

Hugs,

Lauren

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Guest Belinda

Dayna..I am the same way I wil have a few okay days(not symptom free) and then I will have what you call bed-ridden days...It is something I can't understand either. I thought there would be more space between too. This is something I am going to ask Dr.G about when I go on the 13th.

Of course I just got over inner ear(still have it not as intense)problems and now I have started my period about 2 days ago but I am not able to do things for very long again without having to lay down.

All I can say is what the heck is going on????

Remember your not alone in this I understnad how you feel completely( 2 boys 10 and 6) and a incapacitated mommy=no fun.

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Thanks for all your imput. Ernie and CyberPixie I don't even know what to say. That's a long time and I'm sorry this illness has done that to the both of you. There's a special place in my heart for you two as you must be such strong women.

I guess mine stuff is bothering me because there is something more going on that the doctors haven't figured out yet. Something is causing me to crash for a specific time frame. My ANS must just get exhausted and that's probally the only answer. Who knows.

Thanks for your reponses.

Belinda let me know what dr Grubb says. I see we both have the Pots, Gastroparesis and Autonomic Neuropathy in common so maybe some of his advise would apply to me also.

Have a good day ladies

Dayna

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  • 2 weeks later...
I feel like crud on a daily basis lately but when I get real sick with POTs and gastroparesis I am in bed or homebound for about 2 weeks each time. Sometimes a few days less and sometimes more. This happens every couple of weeks no reason and no known triggers. I don't know if this is normal for us or do I have something more going on?

I really feel I would be able to handle this illness better (family wise) if I could get these episodes to be shorter. Am I alone in this? I'm under the impression most of you have good days and bad days. I have ok periods and bad periods.

Does anyone else experience this?

Dayna

I am a newbe to this whole POTS thing. Just been diagnosed a month ago but have suffered from it for a year and a half with Dr.s shrugging their shoulders at me.

Infections put me in bed for a long time and it takes months to get back on my feet. At times I used a walker and wheel chair. I still use a w/c if I go out anywhere like shopoping.

I have bad crashes that last days, sometimes with no reasons. I also have good days and bad days.

The main thing that has helped me is wearing a pedometer. Wal-Mart has them for $3.-$6. I have to wear mine in the back to be more accurate. I write my mileage down every day. I have been able to tell that I tend to crash more often on days I walk farther or after several days of increased activity. I use it to regulate my activity so I can gradually work up my activity or to prevent crashes that come from overdueing.

Periods make me real tired and tearful sometimes. Hormone therapy helped me alot. I'm on boi-identical hormones (estrogen, progesteron, and testosteron). I know they've made a huge difference for me. I switched hormones right before I was diagnosed with POTS and dysautonomia in a desperate attempt to find anything to help myself. That was a no-no. Now I'm back to 3 days in bed during my period. It will level out again. My body doesn't handle changes well. I won't switch hormones again. Bioidenticals don't have the same side effects or dangers as synthetic hormones.

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hmm-it deoends on what i ddi to cause the crash-- or if my body is freaking out over somehting..

I've been majorly crashed for about 4 yrs now.. severly crashed for one yr.. and am back to ebing nearl house bound... really trying to avoid a complete bed bound crash... thouigh my butt is permantly molded into the couch cushions..

hang in there dear!! BIG HUGS

linda

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I have been in mine since December, but I am starting to improve. I am keeping postive, and hoping thing keep getting better. I am starting to use the oxygen less, and being able to do alittle more. I think the the new meds are helping. I would love to get better and go back to work. (Who would have thought I would be bagging to go back to work)

Before this last crash I would be done for a week to a week and a half at a time. Then I would get better and do it again!

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