getting more confusing

[wheeler641]

Went to se my GP today just for a refill on some scripts. Mentioned to him how sometimes I am just sitting there and then all of a sudden bamm, I am fast asleep. I posted on this a few months back before my multitude of other tests and my trip to the rhuemy. I am actually hyper most of the time, I usually get by on only about 5 hours sleep a night and it seems like I am always doing something. After just falling asleep or passing out, I wake up with my heart pounding and kind of disoriented. He looked through my medical records and asked me if I had ever been tested for MG, I said I thought so, but he could not find it in his records, so he is testing me for it. He also wants me to have a sleep study done, but I need to arrange for one my sons to stay with my husband overnight. I finished the doxy, really do not feel much better, the twitching has decreased about 80% but it never really bothered me that much in the first place. The cramps I get in my legs at night are the worst and lately I have been getting them in my hands after driving, and also if I cough and sneeze I will get a cramp in my side or abdomen. I am down to only 5mg of prednisone a day now and really feel like crap. My GP said to increase it back up to 15mg a day which I probaly will do starting tomorrow. My sed rate dropped when I was on 30mg a day, but is now right back up there at 138. I told my doc its a shame that maybe I will never know what I have until my autopsy and then I still will not know. At least I got a laugh out of him. Just wanted to give an update, not getting any better, but not appreciably worse either, margaret

 

[Zaphoon]

Margaret,

I'm sad to hear you are having a tough time of it. The suddenly falling asleep thing is worrisome. I wonder what is causing that problem. I hope the docs are able to get to the bottom of things for you.

Zaphoon

 

[GlenBrittle]

Falling asleep in a snap sounds like narcolepsy to me. Or , very bad sleep apnea. Waking up with your heart racing , disoriented , sounds like sleep apnea. Your body is craving oxygen.

Yes , I have obstructive sleep apnea, and it is manageable.

Do you dream ?

Get checked out at a sleep clinic.

Glen

 

[wheeler641]

glen ,I asked my husband if it seems like I stop breathing at night, he said no. I do snore alot, always have. I am not overweight or anything, I am 5'6 about 160 pds. I do smoke however. it started about 5 months ago, but now it beginning to happen more often. I only remember one time this happenned that i was actually dreaming, when my grandaughter came into the room and woke me up. Felt like I was asleep a long time but in reality it was only about 10 minutes. It is kind of scary! Did you have a sleep study done? what needs to be done if you do have it I also looked up narcolepsy but most of my symptoms do not fit it. I don't have any difficulty breathing, not that I know of anyway. I also have been waking up with headaches lately and I NEVER EVER get headaches, not since I stopped drinking 5 years ago. Margaret

 

[joelc]

I used to wake up with headaches and it was due to high CO2 because of breathing issues, I got a bipap and no more headaches. Please get checked for this possibility.

 

[BethU]

Margaret, if you do have a sleep study done, it is nothing to worry about. You go there about 9 p.m. and they fix electrodes to various spots on your head and other places with goop that's a pain to shampoo out, but no big problem. These record the levels of sleep and awakeness all through the night, and they can tell if you stop breathing and this semi-wakes you up, etc.

Good luck on the tests for MG. Let's hope this will lead to a diagnosed and treatment!

 

[lydia]

Margaret,

You should get that sleep study done. I have been twice and other than being resentful of not being in my own bed and anticipating the 5 am wake-up it is not bad at all. As for the goop Beth mentioned...the first time I didn't know about it and was showering...ran my fingers through the back of my hair....felt those lumps and jumped right out of my skin! Had seen some horror movie where the girl in the shower does the same thing...only the lumps are a second set of eyes...gross!

Seriously, what if you are driving and you fall asleep? At the sleep center they have a survey with one item that specifically asks about suddenly falling asleep like that...Be safe, get it checked out!

 

[Al]

If you get a sleep study done, make sure they monitor CO2 and 02 levels. Some centers inexperienced with ALS don't monitor CO2 which is the reason you're there in the first place.
By the way, if anyone ever asks if you fall asleep at a traffic light say no. They'll yank your license and you'll have a heck of a time getting it back. If you do fall asleep like that, Don't Drive until you get a Bipap.

AL.

 

[brendapals]

Margaret-
Gosh, I hope you do go for the sleep study! That could be a very scary feeling just falling asleep! I had 2 sleep studies done, and it's not bad at all-just the gunk in your hair. Keep us posted,
take good care,
brenda

 

[GlenBrittle]

Hey Margaret,

Yes I had the tests. I have had 4 sleep studies done - two for diagnosis - two for checkups.

Sleep apnea doesn't matter how heavy or thin you are. Though heavier people as myself have more tissue around the soft pallette. Sleep Apnea is where when you reach sleep level sleep and all of your muscles relax , your soft pallette hands down and obstructs your airway. Your brain then wakes you up to sleep level 2 "Hey stupid ya gotta breathe here" so that you can breathe again. (snore on intake) . You then try to enter sleep level 3 again and repeat and repeat. This can happen quite frequently - I was tagged at 142 apneas per hour. Usually you start at 10pm and leave by 5am.

The narc test is a pain in the ass. it lasts over 5 hours with sessions of "go to sleep , wake up , go to sleep , wake up " - they test to see whether you dream within 20 minutes of falling asleep . I more tired when I left. sheesh. Like AL says , if they ask you "Did you dream?" say "Not that I remember" !

Hope this info helps you. Please do get tested.

Glen

 

[wheeler641]

thanks everyone for replying. You have convinced me I need to have this done as soon as possible. I just hate hospitals but I guess I can deal with it for one night. Do you check in at night and leave in the morning. Lydia I laughed hysterically about the eyeballs in the back of the head. That is from the movie the grudge isn,t it? I don't think I would fall asleep driving, I do geta little advance notice, my eyes feel heavy, I am not physically tired, my eyes just feel heavy. I also wake up several times a night, but it is usually to go the bathroom(my ballder ain't what it used to be. It is the headaches in the morning that gets me worried, I did have an mri done and everthing else in me head is ok. Well time to feed the cats, they won't leave me alone till I do, margaret

 

[wheeler641]

just one more question. What is the remedy if I do have sleep apnea? Is it a bipap? and also do they give you the results before you leave the hospital?

 

[BethU]

Margaret ... You check in at night and they wake you up at 5 a.m. My problem was that I normally sleep on my side or stomach, and with all the gizmos on your head during the study, you have to sleep on your back. So I couldn't fall asleep for several hours (even after taking an Ambien, which they recommended ... they said "do what you normally do to fall asleep").

I was bored silly, and being awake all that time, I kept having to go to the bathroom, so I'd wave my arms around to make the gizmos go crazy and get the technician's attention, and he'd come in and ask what was wrong, then unplug everything and I'd trot off down the hall and come back and he'd replug everything. Every time I'd start to fall asleep and turn onto my side, this disembodied voice would say, "turn over on your back" and I'd wake up again.

Anyway ... the technician did give me the informal results at the time: no sleep apnea (possibly because of no sleep).

If you do have apnea, the remedy is a BiPap or CPap, and if you have apnea, those devices will make a huge improvement in your energy level.

(At the clinic I was at, if you do have apnea, they can fit you with the BiPap or Cpap then and there, and find out what pressures to use, so you'll not only have the results, you'll have the equipment when you leave.)

 

[GlenBrittle]

check in at 9:30 PM - Check out at 5am - yep ... 5am is just cruel

I was allowed to sleep on my sides , and that is where I get my best sleep. I use a full face mask so its easy to bury it into the pillow.

You usually have to wait until the sleep doctor reviews your nights performance. A chatty nurse might not give you the proper news.

If you only have sleep apnea , try for the auto-setting CPAP . If you have ALS , then look at the BIPAP so you only have to purchase one machine. Dont skimp on the mask , and dont let them tell you it looks perfect , get the one that fits properly and is comfortable. A good test for mask fitment is to take a pillow with you and lie down on the floor. Sitting in a chair does not mimic real use.

The headaches will go away ! Be prepared for the dreams to come back.

OK ... this isnt to scare you Margaret, its just effin funny.

The first night I had my CPAP machine , I had a dream . Probably the first in very many years.
I was dreaming about scuba diving. I love underwater stuff.
I dreamed this octopus clamped onto my face in an "alien-like" fashion, wrapped around my head.
I woke up screaming and here is this (old style) full face mask with many straps holding it on (wrapped around my head). I screamed even more and destroyed the mask , the hose , and the light on the night stand. Didnt go back to sleep at that point.
When I told this to the ladies at the store where I bought it , they laughed so much that I got free replacements for the "defective parts".

Yep , it still is funny.

 

[rick/Wpg]

OK! As terrifying as I'm sure the dream was...that gave me one of the best laughs of the day!
I also love scuba diving - as do many on the forum....but I am glad it was you that had the dream not me!
My wife just got me a Wii simulated diving game called Endless Ocean that is pretty cool....sadly the only way I'll be diving from now on.
Although Barry G and I were chatting...he loves to dive too...he can't hold a reg in his mouth anymore ....I can do that but can't move my legs so we figure we can buddy up and still make it happen
Maybe we should organise an ALS Scuba Diving Fundraiser? It would at least draw a crowd!
Rick