Sorry I have to vent to someone or someplace

[IBTeri]

Ok I little about whats been going on with me to explain.
I"m over weight 197lbs (was 250?lbs in Jan of this year.) I have type II diabetes, high blood pressure, high cholesterol plus I have A.D.D.

I hadn't had meds in over 3yrs cause no medical. I got medical back Jan 2006.
I was so sick and lol yes tired. I thought was because my health was out of control. So I started getting everything under control that I could. I got sugar under control by meds and losing weight. My A1C is now 5 it was 11 in Jan.
Not sure about my high cholesterol it was like 480 (total good and bad) in Jan. Not sure if I want to know. Blood pressure was like 160/100 in Jan. I did have it down to 130/84 with meds. But with meds and losing weight its now around 115/71. At night have to be carefull cause goes lower 96/76.
I also take meds for A.D.D.
I have very bad allergys too.
But even after getting meds for everything and getting things under control I feel tired. So tired I hardly get out of bed on most days. And thats saying alot cause of my A.D.D meds. I'm not depressed but if I don't get this tireness to go away soon I am heading that way.

I have had since Jan 2006 a oxymetry test (3 differant times cause I kept messing it up.) Once I dropped machine when I went to bathroom in middle of night. Than I turned it off some how in middle of night. Still not sure how but woke up and it was off. Third time was the charm but I feel it still was messed up cause didn't sleep good because of what happened the first 2 times.

Than had sleep study. I got there when they told me too. And got setup. Tech told me he wanted me to get to sleep by 11pm. Yeah right I also have had Insomnia. I've had it for years. I started taking Rozerem and it has help a great deal. But I'm still lucky if I go to bed before midnight. So at 10:30 I took another Rozerem. And I still didn't get to sleep until midnight. Than I still kept waking up and going back to sleep. Around 3am I hit rem and thats when I had problems breathing. But I woke up when my O2 dropped very far. (under 90) So they said I had mild to moderate sleep apenia?
But tech said that I also had lol insomnia. I told him I could have told you that! He said yeah but out of all the people who think they do they really don't and now I have it in writing.

Any way I got started on cpap 2 weeks ago. But I still feel tired. I tried nose mask but woke up gasping for air. I'm not a mouth breather. But when I stop breathing I do gasp for air with my mouth? If that makes any since? So asked for a face mask. Which is saying a lot because I can't even stand my own hand near my face. Its hard to kiss husband for long with out wanting to gasp for air. Any way got new face mask and that drove me nuts because of above and couldn't sleep on side because of leaks. I found a fix for me. And got some good nights sleep using it. But felt horrible still. I started having left arm numbness and chest pressure. So went to doctor to find out that I have low potassium. Symptoms of low potassium levels are tiredness, muscle weakness and heart muscle irritability. You're likely to develop muscle cramps and weakness, accompanied by thirst and a great deal of urination. Your heart may begin to skip beats--a very dangerous sign.

I was told also I have PTSS. In other words when I get stressed I get sick. lol I swear the state medical is trying to kill me not heal me!! I've been battling them for months. Just this past week was told would lose my medical the 31 of Oct. Than got a letter saying it was good until the end of Nov2oo6. Than got on phone and was told that wasn't true I was good until Feb2007. WTF any way now just got a call saying no medical as of tomorrow. So I faxed the letter saying I'm good until the end of Nov and put a call in right away to the people who said its good until Feb. I am making this post cause I really don't know how much more stress I can take. And my husband doesn't believe in it anyway. So I feel like I have no where to turn and this is like my last ditch effort to try and get help. And to vent.

[ozij]

OK IBTeri, I hear you - way on the other side of the world.

I want to make a cpap suggestion or two, but before that, I want to say, that I'm aware, you've got a whole bunch of problems, and frustrations - and cpap is not necessarily the answer to everything. Regardless of what you read on the forum, keep in touch with all your doctors - and get back to them if you're not satisfied.

So here goes:
You said your breathing problems during the PSG started when you were in REM. That could mean that a. Your OSA may be mild to moderate when averaged over a whole night - but serious while you're in REM. and b. Your pressure needs might vary based on the sleep stage you're in.

You also said you wake up breathless and gasping with cpap. That shouldn't happen. CPAP pressure is supposed to keep you from stopping breathing. Are you sure that's why you open your mouth? I know that I open my mouth when I relax - and then treatment air pours out.

Now, I notice your machine is a Remstar Plus M Series C-Flex CPAP Machine. That is a straight pressure machine, and it doesn't let you follow you treatment results. Other machines - are self adjusting that is they will change the pressure delivered based on your needs, and also have software that lets you follow you treatment results. That costs more of course - is that something you can consider?

For many of us, getting used to xPAP therapy takes time - and you've been combating low postassium levels at the same time - so don't let your present tiredness discourage you.

O.

[Offerocker]

IBTeri:

Congratulations to you on your weight loss! I hope you have the energy to keep going with that.

Is your cholesterol hereditary, or can you help with what you eat?
Although I'm not overweight, I DO have high cholesterol, which is hereditary, so meds are necessary. A diet of beans, fish, everything green, etc. did nothing.

I also have ADD - recently diagnosed. I don't take anything for it though, but that doesn't mean it isn't necessary. I'm curious what you are taking.
There is a wonderful book called "Delivered From Distraction" by Dr. Hallowell. I have it on tape for obvious reasons . It is excellent, and takes the 'stigma' away from ADD. We just have 'busy brains', and need to learn to focus and prioritize.

You've already been given great advice from ozij; more will follow.

About depression - fight it with all your might! Set one goal each day and do it! That will be your reason to get out of bed, to do something for yourself. Staying in bed is the worst thing you could do, but I guess you already know that.

I couldn't agree more that an Auto cpap with C-flex is very beneficial.
Those two features provide you with great flexibility in your treatment.

Stick around here, and you'll find this place to be a haven for you for the most part. Keep up what you've been doing, it seems to be working, and you've proven to be active in dealing with the 'spaghetti system' of paperwork, etc. Keep asking questions here, as they arise.

Oh - do SOME sort of exercise, even jumping jacks a few times a day - it's good for what ails ya!

What was your 'fix' for your mask?

[rested gal]

Hi Teri,

You've been fighting (still are) a lot of health issues. That's wonderful to hear about the weight loss.

Your profile lists a REMstar Plus "M" series machine. I was under the impression you use a REMstar Pro "M" series machine. If you have the Pro "M", then you do have one that can gather full data, and you might want to update the Profile equipment info.

Sure can't blame you for getting frustrated with the runaround you get when trying to get straight answers about your health coverage.

Hope you start feeling better soon. It can seem like very slow steps, I'm sure. But it really looks like you are making the right kind of progress. Just keep working on the pieces of the puzzle no matter how tedious it can seem. You'll have it all together eventually. And you'll always have the encouragement and support right here.

[krousseau]

Do you have the energy for some more calls. Do them with pen & paper in front of you-write down date and time-write down the name of everyone you talk to-ask to talk to a supervisor and tell that person about the inconsistencies you have been getting. Ask for something in writing. Have they sent you any letters about terminating your coverage. If it is state/gov insurance do you have a case worker-if regular insurance how about your state insurance commissioner? It is difficult to get a supervisor-don't hang up-just keep asking for the supervisor. If the sup in't there ask for the name and extension number.