the last place i went did not follow thru with anything..the respitory therapist didn't return my calls for over 2 months..i needed a different type or size of mask and without them to return my calls it wasn't happening..so the cpap machine was of no use to me at all..i have been having severe sleep attacks at home but now they were happening at work..i was so embarrased..people were actually watching my eyes close and making comments..i leftthe floor and went outside --sat on the bench and lost another hour of time..sat down at 6:00 and next thing i know it was 7..i was afraid to drive home so i kept busy(standing up and walking around..all the time praying that i would not fall asleep on my feet(which i have done before at home)
well now i am goiing to another sleep dr tomorrow (farther away from my home) but this one has a good reputation..and friday is another overnight sleep study for me..i missed work today cuz i could not stay awake. so tired (ha-ha) of being tire and feeling like **** all the time..between the rsd,fibromyalgia,sleep problems and now i have trigger finger of my right thumb..it never ends...it is making my depression oh so much worse...when will this all end??? moonstar

Moonstar... I hope this sleep study was productive, and that you're able to get some communication out of the docs!!!!

WOW Moonstar, so sorry you are going through all this. Have you been dx with Narcolepsy then? My new neuro (who works with the MS neuro) found out that I not only have sleep apnea, but is nearly certain that these "episodes" I get over the years are narcoplepsy!!!

I would be scared too. Let us know how its going ok?
Hang in there. Anyone at work know?

Warmly Jan

for your good thoughts... i finally got a new mask for my machine-- but can still only wear it for a few hours.. yes i do believe i have narcolepsy too-- i finally recieved approval for the provigil medicine and it helps alot to keep me awake during the day.. i have not been to work since dec 31, as i was falling asleep constantly and my vertigo does not seem to be going away. driving is very difficult at times. i wirk from 4:30 pm- 10:30 pm.. and driving at night is even harder.. so the possability of me having to retire is 100 %..
i have been so sick for the past 15 yrs-- and have been fighting so hard -- i am just so tired.. staying home is going to be good for me physically but mentally i feel like a failure-- my illness has won ....
yes people at work do know.. i was getting teased constantly about falling asleep. some were concerned and would watch me so i didn't fall over-- other times i would fall asleep while actually standing..if i take the meds too early- i still have trouble at night -- if i take them too late- i have trouble staying awake during the day and then trouble trying to wake up to get there-- and of course i am up all night then..can't seem to win at all these days---
thanks so very much for your concern--i wish you some restful and peaceful nights---linda

Oh dear Linda. My condition is no where as serious. But.. it looks like it.
I still have a hard time accepting the Narcolepsy dx, tho its not official. BUT he is the first to make something of these "episodes". I would like to talk to you more ok?

I was on Provigil and it was great at first. THen I went to a special Nuritionist and didnt need it. I dont get so sleepy that I can no longer hold up my head. I am tired, but I am used to it kind of tired, ya know?

I too was Dx with Fribo just last summer and once before. Turns out the 1st time was a guess by that PCP that day. I have inflammation in the rib cage/ mid back area. Costochondritis its called. Its the worse kind of pain as it squeezes and goes into spasms that take my breath away. THat is my worst symptom.

Over 10 years I get these "sudden attacks" where my I feel really weak like I am going to collapse, or lose consciousness..then BP/HR suddendly goes up high. I am not sure which happens first the BP/HR skyrocketing or the weakness. I usually end up in the ER presenting like I had a stroke. I have trouble with balance and walking and sometimes it turns into a terrible headache.

MD's make educated guesses and guess with what kind of med and does in my opinion. My nutritionist has a program that evaluates EXACTLY what area in your brain/body that is deficient or toxic or ill. AND he can read the body as to what you need, whether that nutritional program agrees with each other and EXACTLY what the dose or amt should be. HE's sooo good that my MS neuro sent me back to him. He stopped my chronic fatigue or improved it greatly, and cleared up my cog fog for the most part.

I think its a dietary problem. Probaby gluten and other things.

It IS wearing isnt it??

Talk soon ok?

WArmly Jan

Well... maybe I AM in a cog fog today !! I take Baclofen for my spasticity and can take Lyrica for pain but try not to. These drugs help me sleep better, more soundly but give me a hangover feeling.

Since I have had to leave a couple of places where I work in an ambulance to the ER due to these "episodes" that present as a TIA/Stroke, I now can handle them with an extra 25 mg of BP med, a beta blocker called Atenolol.
If I lay down anyways.

My sleep neuro is so excited that he thinks he has DX me correctly tho its stil tentative. He said my BP/HR probably go up cuz I or my body is in a panic to stay alert/awake. BUt my "episodes" are long lasting and I can HEAR everything tho I usually can no longer remain alert. My body looks like I am unresponsive and usually I can no longer TALK. My cognitive is slow or stopped where I can no longer identify and pass their neuro tests.

Finally I come out of this state, (ERs call it "altered consciousness states) and my cognitive and speech is really really slow. THis can go on for hours. See? THat is why I dont think its Narcolepsy. My Rhuematologist thinks its more heart related due to another condition called NEuro Sarcoidosis. Who the hecks knows??? My lungs are worse, with asthma now and that is typical of sarcoidosis. I see my Rheumy this week.

CONFUSING!!!!

Talk to me girl...lol

Jan

hi jan--- i do knoew how all of this mess feels... i have had 5 mini-strokes according to the mri and cat scans done .... they have no idea as to why?? did many tests 3-4 x's over and everythiing has always come back as fine.. my fibro has been diadgnosed as full body now.. and it is so awful..the lyrica was working at first--- then the upped it to 225 mgs-- and the pain increased besides having my hands and feet swell up so much that weariing sneakers is impossible (open backed sandals is all that filt on my feet) can't see any spaces between my fingers or bend my toes... so the dr lowered it down to 150 mgs...still the swelling is just as bad--so i stopped taking it-- and the swelling has not gone down.... my bp id fine..blood work is fine..low on b12 so i give injections 1 x a week and take vitamins...have no appetite.. when i eat it either comes out one end or the other (so i eat sparingly)

all of it is very wearing on me mentally and physically.. and now i am on no pain meds so i get to feel it all.. the pain is with me 24/7 would love to take out my brain and put it on a shelf for awhile to escape the world and the pain...but my reality is that i will have to live with it until my paperwork goes thru and then i can get a real dr...who isn't narcotic phobic.. i never abused any of my meds-- and for his nurse pract. to say i was after meeting with me for less than 15 min-- was and is absurd...but the dr believed him over me so .....i will live thru this with alot of pain until i can change it...
i don't get to use the computer during the day.. as my boyfriend works on e-bay then -- and he gets home from work at 1:30 am and then he is back on it till about 5 am.. but feel free to write to me anytime you want or need to..i will answer as soon as i can..these sites have helped me get thru so many rough times... don't know where i would be if i had not found them...
please take care of yourself..treat yourself with the kindness that you share with others...hope to hear from you again...linda

Awww Linda, I refused to believe in certain professional guesses. I too was told i had more than 2 TIAs and found out NO< I never had any. So its a guess, ok?

Since my BP/HR go out of conrol, they think its TIAs. But since this nutritionist tested me and DETOXED me, and the MS doc has watched me over the years, he does not think it was a stroke at all.

So.. they make dx's depending on what kind of place or doctor you are seeing. YOu also dont have to LIVE with FIBRO either. Have you ever seen a holistic doc or nutritionist? the kind i see can do this amazing evaluation called NRT or nutritional response testing. Some chiropractors are trained to do this testing too. All i know is that after seeing him, a LOT of my problems/symptoms are better or gone.

So dont give up ok?
Talk soon my dear Linda

Jan

Moonstar, I relate so well to your story. You are the first person I've encountered who suffers the exact same disorders that I do...Narcolepsy without cateplexy, RSD, Fibromyalgia & Depression. You actually mentioned sleep apnea, not Narc. However, since you are not getting relief from the mask that they are giving you for the apnea, I'm inclined to think that you have Narc. However, I'm certainly no neurologist, and I do not know what they found on your 2nd sleep study. Pleaz let me know! Are you getting meds instead of that awful mask that they treat apnea with which is not effective if you suffer from Narc? If so, what meds are you on and are they helping you if you are so inclined to share? Good luck, God Bless, & feel free to write to me ...I'm new to this forum and any forum in general, so I'm not familiar with the status quo. However, rest assured we are comrads, Moonstar. If misery loves company, we've found each other, lol! Take gr8 care, and let me know how things are going, Slowhandfan
BTW, anyone else who suffers from Narc that would care to share their experience?

I am wondering if you are having Cataplexy and not
Narcolepsy? Have they officially diagnosed the issue
yet?

In addition during Sleep Study:

Sleep Apnea can be caused by various other issues
as well: your body Chemistry / Hematology levels
should reveal this.

Circulation is also an issue; where drop in HR & BP
(Heart Rate & Blood Pressure).

I am wondering if you've ever had a Holter Monitor
(usually you're sent to the Cardiology Department
to have this unit put on you for 24 hours - and they
are now very discrete and not big and bulky like the
old days), which monitors your EKG (or ECG) your
Cardiac System. And a HR/BP Monitoring - which is
another unit - which can be a 12 hour or 24 hour
monitoring - which is done in the same fashion as
above.

All of this together - along with the Sleep Study,
can help a lot tying it all up together.

I have had this procedure performed - as they wanted
to rule out Narcolepsy, Cataplexy, etc out - even though
I have Epilepsy and Neurological problems - but suffer
from Nocturnal Seizures. It was very helpful information
when it was all put together.

I also suffer from T.I.A. as well, on top of all of this. So
it can be all jumbled up - so it helps to sort things out.

Hope this helps and you can talk to your Doctor about
this.