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Hi Linda, I’m up a little late tonight too and just wanted to write. We do lose our old lives, to a great extent, to cidp. But you have the best attitude! You are living in the now and enjoying what you can….we were given lemons and we made lemonade..:) Keep up the great attitude. You really got bad news, good news, bad news slung all at you. My girlfriend has macular degeneration and losed most of her vision, but the association for the blind has helped her with the two canes, illuminators, key chains that tell the time outloud, and there is a computer that you can buy special. All through this, she has maintained the same attitude as you-she lives in the now and enjoys what she can everyday.
All my best wishes to you.
Take good care.

Linda, glad to see you back ! Geez, you’ve had quite the summer. Glad you got some answers and I think it’s awesome you have such a good attitude.

I never realized that sleep apnea could have so many “side effects”. I sure hope you get things straightened out with that.

Thank God there was no brain tumor !

You’re in my thoughts,
Stacey

Linda,
I have seen how sleep apnea can cause problems and make a person suffer.
My brother had it and went through the sleep study. He slept with oxygen at night as he stopped breathing so many times through the night Dr. told him he may stop breathing and not start again.
He had nickel size scar tissue removed from his nasal passage. A few weeks later he had a tonsillectomy, the uvula removed and the soft palate scraped to reduce the size of it. This surgery made his air passage larger with no obstructions. He is now able to sleep without oxygen, does not stop breathing while asleep and his energy level has increased as he gets the sleep and rest he needs.
All of this sounds drastic and hope you don’t need it but just wanted to let you know that it did work for my brother.
Take care and good luck
Shirley

Linda, Wow you have had a busy summer. I’m glad to hear they finally found a cause for you now its just getting it under control. You sound like you are doing well with all this. Keep us posted as you are in my thoughts and prayers.

Linda, I am so glad you were able to get some answers. Sometimes the not knowing is worse than the knowing. Once we know, we can deal! Keep up your positive attitude. You will/can conquer anything. Best always.

Linda,
Hi! I am Cathy C. & new to the forum. I am sorry you have had such a rough summer. But sounds like things are on th up side now that you know what you are dealing with. I went for a routine eye exam last week & was diag. with early macular degeneration. Sometimes I think what else can I have go array. But you said it, we have to live in the now. Great attitude. I wish you the best

Linda-about that unspoken rule-I too have learned that we can be given more than one chronic illness, but I truly believe God sent me new really special friends to help me endure.
So many of you have become so close and yet we have never met, and we give each other support through words-encourage and listen and everything God intended for us to be.
I pray Linda that the new mouth appliance will work better for you–you better get all that art work and crafty stuff ready to roll, give you a couple good night’s sleep, and think how creative your mind will get.:)

Linda, I’m curious about your statement that you tried CPAP for several months with little success. I also have sleep apnea and I’ve been sleeping with a CPAP for about 5 years now. It has made a huge difference for me. Would you mind elaborating on your statement and telling us why you had little success with the CPAP?

[FONT=Georgia]I just wanted to add something here in regards to the CPAP machine, not everyone can benefit from them. My wife had one & everytime she tried to put the thing on she panicked, & the thing literally took her breath away. Regardless some people can not use one of them, I don’t want to hear a sermon or whatever on this I know what happened with my wife. Not every person is the same, what works for one person may not work for the next.[/FONT]

Hi Linda! I am a Linda too! Your summer sounds like mine. But I am glad that your finally are on the road now to recovery. Good luck and I wish you well!

Linda,
I am a little confused. WHY do yall need c-pap to sleep? Did the GBS ruin your resp. system or what? I give you cuddos for wearing that thing at night because I am so clostrophobic that would prob. kill me! 😮
Good luck & take care.

For I too have the sleep apnea but also suffer insomnia. I like sleeping on my stomach and hope the mask they give me isn’t one that looks like an airplane mask. My father had one of those and I tried it out and could not tolerate that mask. I have CIDP too but undiagnosed as to what the cause is. But suffer dearly with sleep problems. And since you mentioned CIDP caused by Sleep Apnea. hmm! I have never heard of this before but would like to look into it further. That is something for me to check out since I have both problems and my body is going nuts. Very interesting hearing this.

Hi LCala! I sure hope that you get much bette sleep soon. This stuff with CIDP I think can cause our nerve do so many things. Even many sleepless nights. Good luck L Cala! I wish you my best!

Hey Linda,
Glad to see you are back, I’ve missed you! Sorry to hear your summer was a bummer. I know how disappointed you must have been to have to sell your equipment – hang in there, maybe something good will come of it in some way you aren’t expecting.

I’m also sorry to hear about the sleep apnea and you losing your vision. That is a very frightening thing! I am fairly certain my husband has sleep apnea too and since we think it might be contributing to his current problems he is scheduled for a sleep study next week. Sadly, I’m thinking I might need to get one too as I’ve had trouble getting enough oxygen while I’m sleeping. I know I shouldn’t but I’m going to put it off for a few more weeks until my husband is better, then we will tackle my sleep problems.

So glad you are back Linda, take care of yourself!

Julie

Julie and Linda-Just got off the phone with one of my best friends that uses CPAP for sleep apnea. I wanted to make sure I had the right info before I wrote anything. Suzie tried all the sizes of masks and she has the clostrophobic issues and the therapist changed her over to the nasal prongs that just go into her nose and that has worked so much better for her and she is getting 6+ hours sleep. Just input-hope it helps.