Sleep Study

[Guest tearose]

Has anyone done this? Did you get any helpful information?

[Jackie]

Tearose, my mother was diagnosed with chronic fatigue syndrome at the age of 57 and she is now 70. She has had horrible trouble sleeping ever since she got sick. She takes Ambien. Her doctor has recently planned to send her for a sleep study but it has been rescheduled because she had a heart cath. for a heart aneurysm and it really through her body into a spin out. If and when she has it done, I will be happy to share any information that comes out of it. We (my sister with MS and I) believe my mother suffers from dysautonomia (never tilted but she takes Ativan, Ambien, and atenolol for her symptoms) and though she takes low doses of these meds she doesn't feel well most of the time and would like to find out if there is an alternative to Ambien that will help her with her sleep problems. If you have one done, please share and when my mother has her's done, I will followup here and let you know if anything beneficial transpired from it.

[Guest tearose]

Jackie, thank you for your reply. I have had excessive daytime tiredness, slower cognitive function and generally have been feeling horrible. My internist has ordered a sleep study which I will do next Tuesday night. I am just learning that people with POTS can have serious problems with breathing during sleep; since it is the autonomic nervous system that regulates our breathing. I only hope that between the sleep study on Tues and the brain MRI on Wed, they can tell me if all I have is the dysautonomia or maybe I also have other neurologic problems...diffuse lyme disease, MS, MSA or PAF...this is so not pleasant. I am so numb about all of this. How is your sister managing? Feeling fearful, tearose

[Merrill]

Tearose, have you been through your sleep study? How did it go?

I read on another post that you have even more tests ahead--I'm so sorry to hear that. Know that I'm keeping you in my thoughts and wishing you only the best.

Merrill

[Guest tearose]

Hi. Thanks for checking up on me....the sleep study is coming up on March 23, 4 days away.

I've been told that they will monitor brain waves, heart and oxygen and respirations..I promise to fill you in afterwards! It makes alot of logical sense that if we have problems with our autonomic nervous systems by day we may also have trouble when sleeping. I just hadn't thought of it. tearose

[Dawg Tired]

I have had 2 of them. One in 2000 and the other last June. They stick electrodes on your head - don't worry - the glue comes out easliy, and on your legs, chest and on your face. It isn't as bad as it sounds. If you need to get up during the night to potty you just let them know, they can unplug the electrodes and you just carry them with you. Wear something comfortable.

The first one they decided I had obstructive sleep apnea. I had a septoplasty and turbinectomy. It didn't seem to help a whole lot. But on a lighter note they sent home a sheet of instructions home with me. One of them said that since I seem to need more sleep maybe I should try to sleep 10 hours a day. DUH! If I can't sleep 8 hours a day what made them think I could sleep 10??

This second one, last June just showed I still have OSA. This time they tried a C-PAP machine. I couldn't tolerate it. It gave me a certain type of headache that they said happens to about 3 percent of people. it was because the C-PAP raised my intracranial pressure. Good luck! It isn't bad or scary.

[Jackie]

Bless your heart tearose for being afraid. I really wouldn't be afraid of the test though because as Dawg Tired said it would just be electrodes...nothing invasive thank goodness but I understand the fear of the unknown. I think though honestly what is probaby bothering you more is what if anything it might show and I can totally understand that too. We struggle so hard to get one thing under our feet just to find there might be more. I myself am going to ask for an MRI too because I think I would like to know now if there is something like MS starting because of my sister. Nobody wants to have tests done but they are unfortunately necessary if we are to get any useful answers. I will pray for you that all results in good news and rebuke all fear from nigh your door! You will be fine! Be sure to come back after the test (Wed MRI?)...so we will look for update on Thursday...hopefully you will have some answers and don't be numb...be grateful you have an internist who cares to look to be on the safe side! What a wonderful concept for a doctor to actually do their job!!!

[Merrill]

Tearose, I think we were both writing at the same time and our messages crossed in cyberspace! It looks pretty weird that I asked when your appointment was and you said so just above!

I just wanted to say that I feel for you... and I'm sorry you're going through such a rough spell. Those are some pretty heavy tests to have back to back like that! I hope you will feel a sense of relief when they're over--and when you get some information about what's going on

You have such a kind and compassionate soul and an open heart as evidenced by your posts on this forum. (What a lot you have on your plate right now, and still you take time to spread healing energy to others!) I trust that you talk to yourself with that same sense of understanding and kindness...

May your fear soon be conquered by your strength (it's there somewhere!)

merrill

[Guest tearose]

Hello fellow travellers, The sleep study was last night and it was not a problem to get to sleep at all! The only inconvience was that it took me four shampoos to get the glue out of my hair...small price to pay for what I hope will be useful information for improving the quality of life. The results will take two weeks and I'll share when I know. I'm feeling kind of business like now...I leave soon for my brain MRI with contrast. I will start a new thread when I get these answers...the questions are: is what I have progressive pots, pure autonomic failure, MS, blah, blah, blah....so it goes...I keep saying "this will help me find a better treatment plan" and "I cannot control what happens to me, only how I respond"... sometimes, like now, I feel like the road is long and twisting and I wish I could see 'round the bend...I'm a little scared and my eyes are filling up with tears....thank you for listening...I'd better get ready...please keep me in your thoughts today. feeling wilted, tearose

[Louby]

My dearest Tearose,

Your right, the road is long and twisting, with lots of little and big challenges along the way. However, as you said you are with your fellow travellers who are here to listen, and to act as props to help keep you up, when things get too bad that you feel you can't go on. Just around the corner is an easier time, you have to keep strong.

I hope all goes well for you, and I'm looking forward to an update in two weeks time.

With love, and the biggest pile of scones, starwberry jam, harrods tea and cream, that Devon can produce. Louby

[WeimerMom]

Ok, my first time here. Didn't know this existed. I have looked at NDRF.org but stopped reading cause it made me more and more depressed. I find this web, so far, a little funnier. Ok, I know thats stupid, but some days I need a laugh.

Anyway, wanted to give you my take on sleep studies. I took one probably 2 years ago, and I couldn't get to sleep. They let me go at 2:00 am but didn't tell me what I looked like. I just wanted out of there. I stopped to get a drink at the White Castle and I bet I scared that poor person to death. I got home and looked in the mirror. I had glue all over my face and in my hair. It looked like I'd been on a real big drunk and had gotten sick and not cleaned my self up. I had to laugh....Oh boy, what a sight....

They tried the study again. I was drowsy for about 15 minutes, (with the help of ambien) could still hear everything going on around me, the guy in the next room snoring up a storm, the stack of glasses that got knocked over outside of my door, the tubes going through the hospital system, all of it. One of my electrodes started to come loose, the tech came in and touched me. It was all over by the complaining......Another one bit the dust. They ordered me a Cpap machine. That thing was torture. It took too much effort to breath out. I felt like they were trying to blow me up like a baloon... I wouldn't have gotten to sleep even if I could have......They also said I had restless leg syndrom and tried to get me to take Levadopa/Cardadopa. I refused. It had more side effects than POTS.

I am again having problems, and am scheduled with another sleep doctor on friday. I'm going to give him all the data and see if it will help or just waste time to take another study.

I'm beginning to believe that my symptoms are cyclical. I wake up numerous times a night, hyper and grasping for air. This lasts for several months and then I'm back to sleeping 24/7. Anyone else out there do this?

[Dawg Tired]

I think my problems are cyclical like that. I always have a fear that some important test will be done when I am having a "good day" and they will find nothing. This happened to me when I went to Vandy. I was having some good days and my BP wouldn't drop for anything! Then they couldn't get a vein to do a TTT.

Sleep... Comes and goes. Tearose - glad you survived your ordeal, you probably gave the people who saw you afterward something to talk about. Glad you got the glue out of your hair. The first time I went the tech was a really HOT guy - (see, I'm not TOO old!) After that it was always women. Oh well!