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This message has been edited. Last edited by: peekyboo,

Peekyboo,

I know exactly how you are feeling. I too am in a dark place with coping with this condition and I know how hard it is to keep ourselves going when things get unstable.

This community has in the past and is quite literally holding me up at the moment - several people have contacted me privately to support me through my current difficulties. My drs, friends and family in real life have no understanding of my conditions and certainly not when they get bad. But us here do. We can't do anything practical for you but we can be here and believe me you are not alone in suffering in this way.

Do something nice for yourself for the rest of today. Read a good book (if you like reading of course ) and take care.

Becca.

You're not alone. I've spent nearly 26 years (most of my life)dealing with "our" disease. I've spent many nights and days crying for one reason or another, I know it can all seem overwhelming. Besides not feeling well, the emotional pain of being different and appling such effort to simple tasks compounds things. I've found that life and my condition is cyclical. If this is true for you, remember that bad days happen to make your good days seem better. Sounds corny, but it is a nice thought before falling asleep.

On a physical note, some home remedies I've picked up: drink Gatorade cut with water for electrolytes and add a few olives of your choice (small if you're too tired to chew)to help with salt. Bananas and fortified low sugar OJ help too. Watch your carbs and sugars, they'll make your heart rate increase and I also find large proteins hard to digest on bad days. They make unflavored protein powders you can add to your food for energy. Finally, find a good primary care doctor (besides an EP or Neuro), scripts for pain meds, anti-anxiety pills, and sleep aids help more than all the water in the world.

Hope for better days

~H

peeky boo, Please don't feel alone, I am here and understand what you are going through and so do many others on this website. I would love to chat with you sometime, just email me a time and date..... Lynn

i hope that you are doing better by now. please know that you are not alone! there are so many of us who know what you are going through!

hang in there peekyboo! if you ever need anything just let me know! you can call me or write me or whatever you need to... dionna

p.s. i have been missing you at 3am!

dpn't give up. we r all here for u. we have to always remember that whne we r at our worst is when we r around the corner of having a better day.
come here and vent ,rant and rave, we will listen and u can let it out.
prayers

peekyboo,
i just want to be able to get into their face and go whose the psycho now a**hole. how superior so u feel now when u can't even diagnose patients properly. it would almost be worth the copay to just be able to be in their face and teach them a thing or 2. i still may do that.
i like the idea of the stun gun,too.
u r not violent just angry and we should be.
hope today is a better one

Peekyboo

I am so sorry you are having a low day.

What helps me on days like that is making the room dark,lighting some candles,listening to music,getting under blankets and closing my eyes.Sometimes watching tv keeps me edgy.Too much simulation on bad days just makes me feel worse.

Which right now I am about to do.Atleast darken the room and get under some blankets.I am freezing.

You take care and just know with all of us here you are never alone.

Sheila

peekabo, please don't feel alone , I am here anytime to chat with you or email.. la745773@mindspring.com I know it is hard, I understand completely. I will say a pray for you to get rest tonight.

What does "giving up" mean? Acceptance, self destruction, what? I don't know how to not seek improvement, no matter what.. What is the alternative?

Hi I have changed somethings in my life and I found to be very helpfull. I drink about 64oz of water, I eat brown rice three times a day, I am not longer eating meat. I eat eggs instead (3 eggs a week total), I drink a cup of decaffeinated green tea a day, I eat a lots of vegetable and fruits. I stop eating sugar all kinds, I don't even use sugar substitute because it can be very toxic for people who has dysautonomia, I take Bcomplex with vitamin C, folic acid,CoQ10, and Iron. I do not consume any caffeine of anykind,pops, coffee, chocolate etc, I am now taking Prozac (just started today) and at least I don't have tachycardia anymore after I started on this new diet, my apical pulse is now usually 73 and 80 maximum. Before everynight I would get up in the middle of the night with this crazy feeling that I was going to die and that I was going crazzy and my heart rate was over 150's at that time and also during the day when I was just minding my own business. But most important of all I start to pray and I put all to Jesus and this is what keeps me going. God Bless you and I hope you will feel better