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Feeling Helpless In During The Night


carinara
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Lately i feel much worse in during the night. A few weeks ago i got the flue and the first night was a nightmare.I felt fiberish and awful. This strange flue virus stayed with me only 2 days and returned last weekend. Last saturday evening my coughing, fever and so on returned and i felt so awful again. My partner got it within the same hour and he felt really sick as well (he doesnt have POTS though). In the early morning hours i got worse and all of a sudden my tachy stopped and my heart was getting really slow, (this always and only happens when i have a flue). I started to feel weaker and weaker, my ears rang much louder then usual and i started to see stars big time! At that point i always panic, i feel that i have to get my HR up somehow but the funny thing is, that all that doesnt work in them sort of situation. My heart stays ultra slow! My partner wanted to help and get a cold towel (becaue i was hot and sweating then). He got up and you know what? He fainted. He hit his head on the bed and layed on the floor and there was nothing i could do about it. My daughter (she is 12 years old) stayed over at a friends house. I couldnt move and like i said if i get up in during the night without a long preparation beforehand i would lay on the floor like my partner did. It took a while before he could get up again and he said that something like that has never happened to him before. I feel totally helpless in during the nights! Knowing that i just cant get up. It seems like i depend on my partner in during the night, whenever i get too sick, he goes and brings me whatever is needed. If there are any issues with my daughter, our dog, the phone and so on, he is the one who jumps out of bed to solve them. I cant and that scares me. Its not like that in during the day, when my body is awake it responds differently. The other subject is the fluid intake. Like all of you, i drink a lot in during the day but i have to stop in the early evening otherwise i cant make it through the night without having to go to the toilet! And thats really something that i dont have a solution for. Last night this silly flue returned again (always on the weekends). And i had an awful night with the urge of drinking something but i cant, because if i do i have to get up to use the toilett and if i do that i feel even sicker.

Even before that virus it wasn't possible to get up in during the night to go to the toilett because i would need about an hour to get my body in balance again! Its different in during the day! Like many here, i feel worse in the mornings. I get up 2 hours before i have to leave for work so i can slowly get ready! Before i actually get up i sit in bed, take my medicine put my compression stockings on and drink a lot! Than my body allows me to get up and reach for my office chair with rolls on wich I use almost all the time!

I dont like this helpless feeling in during the night! I dont even want to think about how it would be when my partner needs to go away and iam alone with my daughter in during the night. In the day its a totally different story! When my partner returns home really late, i often try to stay awake because once i fall asleep my body changes in some other programm that is also the reason why i dont like taking naps in during the day. My body seems to take ages before getting somehow in balance again.

Is anybody else experiencing this? How do you handle not being able to get up in during the night and the responsibilities that might occur in these hours? I dont want to depend on anybody but i have no idea how to handle night times on my own? and i dont like that! I hate to think that my daughter would have to help me in during the night and see how ill i can get whilest my partner is on a business trip! Like i said, the situation in during the day, when my body is more in balance its a total different story then.

Thanks a lot

carinara

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Guest Sandy Sims

Ringing in the ears is a symptom of too much insulin.

Try eating something at night when you wake--it may help you stablize. BUT NOT SUGAR--try all bran crackers with low fat cheese for a snack that will keep you stable a few hours.

Could be your sugar is too low at night and making you shocky. Would also expalin why you feel better during the day when you have eaten. Also expains why you get groggy after you eat --could be from high sugar levels.

These fast highs and lows are a pre-diabetic state. To find out have a glucose tolerance test done with insulin levels at all blood draws.

Hope it helps,

Sandy

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I used to have real low blood sugar a few years ago. I changed all my eating happits back then and ever since then i'am quiet ok blood sugar wise. I have always sticked to my diet since then. I also have something to eat next to my bed just in case. The only time i need to eat something in during the night is in fact whilest having the flue then i feel this need (like last night) to get a little food in me to stabalize my blood sugar. But normally the low Blood sugar is not a problem for me anymore. I can keep it stable now.

carinara

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I get bad chest pain at night if I have to get up and lie back down--like my body can't adjust to position changes at night at all. I still need to get up one time, about 3-4 hours after going to bed. I'm now taking midodrine before bed so that it's a little better. But improved, not better.

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I'm sorry you're having such difficulty at night. Nights are very hard for me, too. I understand the problem of not being able to get out of bed on your own. I'm not sure what I'd do without my husband. He is the one who gets up in the night with our son, gets my water, helps me to the bathroom, or fixes any night time problems. If I'm sleeping very lightly then I can usually get up on my own as long as I take great care and move slowly. But if I'm sleeping soundly and wake up suddenly, I just can't do it.

Have you considered a bedside commode? Perhaps that would make it possible for you to go to the bathroom on your own if need be. Would a walker, scooter, or wheelchair be helpful for you during the night? Do you have a friend who could spend the night with you occasionally so that you won't be alone? I've had to do this in the past when my husband was on a business trip. Or is there a neighbor who can be on call for you if you need help?

I hope you can find a solution to the difficult nights.

Rachel

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Goodness knows I can't give any advice about sovereignty since my husband is with me all the time 24/7 upon my request because I simple can't cope with the symptoms on my own.

Aside from that, I DO try and do as much as I can without physically imposing upon him as well. During the really rough spells this past summer, I used a device in bed -- a porta-Jane kind of bottle that is designed for women to use. It really helped because I was getty SOOO tachy when I tried to get to the toilet on my own. I also took to sleeping on the floor and rearranged my room so everything was accessible to me on that level. I still do this in my kitchen, because I love to cook but can't stand up enough to prepare anything.

I still use an office chair to wheel around a bit, especially in the bedroom. But most of the time I can do so on my own without asking my husband or one of my kids to push me around.

Good luck finding something that works for you and your family.

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carinara,

i am sorry that you are struggling so much during the night. although i can't actually help you, i would like to tell you how my sons (17 and 14 right now) are fully aware of my situation and are a big help for me. when they were younger i wanted my dysautonomia to keep for myself and not bother them with it. but my doc asked me if i really believed that they didn't know "things" were going on with me and that, by not talking about it with them, they might feel unsure which wouldn't help them at all. so bit by bit i started talking with them and i noticed that they felt so much better. they are so loving and caring and at the same time i am their mom and make sure that they enjoy their own life as much as they can. i am not their responsibilty but for all of us it works well. when my husband is abroad (right now he is in the brasilian sun!!!) the youngest one is sleeping in his part of our lits jumeaux and we have fun, watching a film together or listening to his music. he is there in case i would need him or he can wake his big brother if necessary. i do know that it's far from ideal, but we make the best of it and are still able to have lots of fun.

hope this helps you a bit and wishing you peaceful nights!

corina :(

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