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afraid to sleep


sallyann
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im not used to telling people how bad i feel. i usually try to be overly positive. but i guess i am on this forum for answers an support , so for the first time i guess i am going to let myself whine,SORRY! i know this sounds crazy , i thought we were supposed to feel better when we lay down,but i hate bedtime,as soon as i lay down my neck pain starts then the shakes and im so quizzy i usually have to get up and vomit.i hide my pain often because i never want my family to know i hurt this bad especially my daughter who is doing so well right now.to let her know i am doing this bad would only make her feel afraid she may crash,and i never want to dothat to her.does anyone feel this bad at night? and i know mornings are hard for all of us , but i shake all over , vomit every day and feel so weak and out of it.i hate going to bed ,but i hate waking to such a horrible experience everyday.boy i guess this is why i dont whine often .sorry again . i jusst want to know if everyone feels this bad when doing such a simple thing as going to bed.thanks for listening , i promise not to whine again for a really long time.

sallyann

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1. NEVER worry about "whining", we all do it one point or another.

2. have you tried elevating your head? i haven't layed down for years, with the exception of the odd test that absolutly requires it(ie. mri's, ct's, etc). i currently sleep at about 60 degrees and have actually turned those "wedge" pillows upright, and use a few regular pillows on top of the wedge. it is the only way for me to sleep. i started out just using a few extra pillows, then i got a low wedge pillow and worked my way up higher as the years went on. i have even found a recliner not quite right and have actually found my high armed couch the only really comfortable place for me. :rolleyes: go figure. you might also want to try just laying down slowly, ie. sit down with your feet up, slowly lay farther and farther back.

best of luck,

blackwolf

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Yes i feel awful at night, im scared to sleep, i often wake up with tachycardia and HIGH Anxiety, which kicks in irritable sleep and nervous nights, ive had this for 3 years. What i do is hug my Girlfriend, take deep breaths and closemy eyes, most times i fall asleep and awake in the morning.

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I agree with the elevating your head suggestion- it helps on many levels (decreasing reflux for one thing). Try laying on your left side. This has to do with compresseing your vagas nerve which can help with the dizziness and vertigo. Also cold water to sip with peppermint candy in your mouth works for me. It makes no sense but it works! Here's to happier nights!

Carmen

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Hi sallyann,

I don't think we've met before so I wanted to welcome you on the forum. And PLEASE don't be afraid to talk about the things that are difficult for you. That's what we're here for: to help eachother out and listen to eachother!

I can't really help you with the bad nights you have, but I wanted to tell you about letting others know how you feel.

I've been trying to hide that for years (from everybody I loved) and felt sooooo bad because there was no one to help me. Until my doctor asked if I really believed that my dear ones (husband and children) didn't notice anything. And I found out that I was wrong. When you feel bad, you better let people know, because they will notice there's something wrong with you because of your behavior. Not telling them makes them unsure and not knowing what to do. Of course I don't want to bother my family with all my trouble, but it's fair to let them know when you don't feel well, instead of trying to keep it from them. So when I feel really bad I tell them once and it makes me feel better that they know so that I can ask them to help me with something or leave me alone for some time. Being honest to eachother is very important in every relationship. I hope this helps you a bit. I just wrote it so that you can think it over. I know how hard it is to "bother" our loved ones with our problems, but you're there for eachother and that's what's important!

Wishing you better nights to come,

Corina

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blackwolf

thank you . i have not yet tried elelvating my bed. i am not quit sure how to do that , but i am definitlty going to try, tha nk you for the suggestion.

baby boy

thats really a beautifull thought

carmen

who knows maybe it will work for me too.

corina

thank you for your welcome . talking about whats wrong is very diifficult for me. but you are right . my family is always asking me whats wrong .i guess it relly does show.

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sallyann,

what I wanted to let you know most, is that my husband and children felt sooo bad, seeing in how much pain I was and how much trouble POTS gives me. Now that I tell them when I'm really bad they are glad to be able to help me whenever they can. That helps THEM dealing with my chronical illness. I LOVE them for being there for me.

Corina

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steph

no, my cvs definitly is not under control. my doc gives me zofran under the tongue. sometimes that helps from going into a full blown cycle. but nothing in the world seems to help me with the a.m..what meds are you taking?>i would try anything.it seems as tho i the docs i go to tell you what is wwrong but dont do much to fix it . i dont tolerate medicines well . it seems like they all upset my stomach.i have been vomiting at least once a day for 6 years. ill try anything.

thanks

sallyann

corena

you sound like such a sweet person, i am glad you have such a loving family.

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Dear Sallyann,

Thank you for trusting us enough to share your concerns. You are most definately not whining! You are expressing a concern and asking for help -- that's one of the reasons we're all here, so we can all do that.

I used to have major problems at night, too! I absolutely loathed going to bed -- I always had excruciating body aches, my HR would elevate sometimes, I would get severe chest pains, sometimes I couldn't breathe and was unable to move my arms or legs or make a sound for help. For six months, each night was a nightmare of agony. It all changed once I started the Melatonin Dr. Low prescribed (not to urge you to get that too; I just wanted to explain why I'm not sleeping the same way now.); at this point I only have nights like that (of lower intensity) after I've really worn myself out.

My dad elevated the head of my bed about 3-4 inches (went up gradually) by putting blocks of wood under the posts. He's done that to his own bed for years due to acid reflux. If you make sure that the blocks have enough surface area, the posts don't fall off. If the block idea is too scary, you could use a long plank of wood. The elevated head is not an answer for everyone, but if you're interested in trying it, this is a pretty easy, safe, and inexpensive way to do it.

I second corina's last post. I do not share all of the details of my problems with my family, but I do a majority of them. It helps them cope with my illness better, too. It doesn't scare my brothers now when I've collapsed on the floor because they understand why it happens and that when I'm ready, I'll get back up again. It's just part of life. Whenever I curl up in my room partway through the day, my parents know that I'm just in a lot of pain -- they see if there's anything they can do, but if not, they don't have any reason to worry because I've explained it to them before. My mom and sister, in particular, have appreciated that I haven't totally clammed up about how I feel -- they can usually see it in my eyes when I'm really suffering, and it hurts them more if I leave it to their imaginations to wonder what's wrong. I also never wanted to get into a situation in which I ended up at the ER and no one was able to explain to the medical staff what was wrong with me, what would make me worse, what helps alleviate pain, etc.

I'm afraid I don't have any worthwhile medical advice to contribute, but I did want to make sure that you felt more comfortable about sharing your experience with us. We're here to listen, love, and help you through as best we can.

Angela

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angela,

thanks for all of your kind words.and i really appreciate you tips on elevating the bed , ihad ni idea how to go about doing that.i will ask my doc about melatonin.as for my family, i will try to open upto them . i am just so afraid for my daughter as she also dx with dysautomia but lately is doing so well and has so much confidence in her future.i dont want her to think her future is not worth going for because she will just end up as sick as i am.

thanks again

sallyann

steph,

thanks for the website, icant waitto learn more. i have been to a migraine doc.he is actually the one who first suggested zofran, i dont take it on a daily basis . i didnt know i could.i was told to take during a BAD cylcle , as if they all arent bad.i do try taking it in the morning , but it usually doesnt stop , but it does help to control the rest of the day most times.

thank you

sallyann

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sallyann,

you don't have to elevate the whole bed, just your head to start with. try a few extra pillows or a small wedge pillow and work your way up to a higher wedge if you need to. those wedge pillows can be picked up at most medical supply stores and if you are really lucky, sometimes Walgreens. if you want to raise the whole bed, try starting with a 2x4 under the top part of the frame, and add them as you need to. be sure to nail them together and don't use more than 3. if you have a decrative headboard, it may need to be removed or ajdusted in order for the board(s) to fit.

as to being sick so much, what have you tried. i can use only compazine and vestril(sp?). everything else i have tried has made me worse, either feel really bad(spinning diziness and flaoting) to hives and more vomiting. even zofran. go figure.

all my best to you,

blackwolf

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blackwolf

thanks for the tips

as far as medicines for the stomach i really cant remember the names . i know some docs have believed anti dapressants.they didnt work. and everything else i would not be able to hold down, thats why doc finally prescribed zofran under the tongue , because i cant handle swallowing it in pill form.

sallyann

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