my update: not much better with the CPAP

[pandatx]

Hey Everyone!

So, I've continued to try to adjust to the CPAP and it seems to be getting worse, not better. I don't really know why all the sudden I can't stand it (more than usual). Maybe it is the Graves and we all know that I won't really get settled until that is under control. But lately, when I put the mask on I start to feel very anxious and just lay there listening to myself breathe. Once I take it off I can fall asleep. I know all I can do is the best I can do right now. But wanted to let you guys know that I'm still trying.

I think I'm gonna go to a new DME this week and maybe see about trying a different mask. I probably should make a follow up appt with the sleep doctor to discuss this, but not sure what to say with regards to how we feel they mis-scored my sleep studies so I've been putting that off.

Hope everyone is doing well!
xo

[Dreamingofsleep]

Panda,
So good to see your post. Have been wondering how you are! Sorry to hear things are just plain frustrating right now!! What is the deal with the Graves? Is the doctor working closely with you on this? Is it to be expected that the medication takes a long time to kick in?

Anyway, just sending hugs and glad you are still trying.

Keep us posted

Dreaming

[Drowsy Dancer]

I was just thinking about you! I echo everything Dreaming just said. What's up with the Graves? Are you still pondering your treatment options there? It seems like you have to fix that to get everything else fixed.

From your other big thread, if I was understanding the technical talk and remembering it aright, is your thinking that you might have UARS rather than OSA?

Much metta to you in any event.

[RandyJ]

pandatx,

Sorry to hear that you are still struggling. One thing you may want to try if you haven't yet is to wait to mask up until you are sleepy - can barely keep your eyes open sleepy. And if you get anxious, take the mask off, get out of bed and wait until you are relaxed and sleepy enough to try again. I've heard that people prone to mask anxiety have had success with this.

I wish you the best as you continue to work at it.

[Jimster]

If you are thinking about getting a new mask you might want to look at the Wisp. I have been using one for a few nights and the data that I am now getting seems to be much better than what I was getting while using the ResMed's Micro Nasal Mask, and this mask is so small it's hardly a mask.

My pressure is set at 17 and can go up to 20, but the Wisp seems to hold up just fine. The head gear seems OK, really there's not much to it.

I think part of dealing with going to sleep is getting over being anxious. Just think everything that we have had to worry over, and about, all day has to be put aside so we can get some needed rest. I for one don't want to let go of what I have been worrying over all day because I have so much needless effort and time invested in all that worrying.

When I stop worrying I start getting anxious myself, so I just tell myself that I am going to worry all night about the same thing until I get bored and then I fall asleep. So if you can only hear your self breathe then just start worrying about something and you will fall asleep with CPAP or without.

Believe this or not but I sleep much better when I have something on my mind. Here's another thought If you want to get to sleep just give me a call and let me talk to you for just a few minutes. When I'm talking to my wife she always falls asleep pronto regardless of the subject.

Good Luck,

Jim.

[pandatx]

Hi Everyone,

Thanks for the support, encouragement and suggestions.

As far as the Graves goes, I started meds for it but don't go back to the Endo (and get bloodwork) until the end of the month. That said, I just paid out of pocket and ordered my own thyroid tests online and will get blood drawn this week to see were my numbers are. I just can't wait another 3 weeks. One side effect of the meds, particularly if the dose is too high, is weight gain and I'm super paranoid about that. Which is nuts b/c if I have to gain a few pounds to be healthier then I just have to suck it up and be okay with it.

Unfortunately, with Graves, the changes from the meds are very slow going. It can take 6 weeks before you see changes in your bloodwork. Symptom-wise, the beta blocker has helped the racing heart tremendously but I'm still really tired (like more tired than I can actually put words to), forgetful, joints hurt and not sleeping well. From what I understand it can be a bit of a balancing act to get the dosage right so that you're not hyper but not swinging down to hypo. I feel like I've aged 10 years

I had to go to the ER on Friday b/c I felt so crappy. I called my Endo and he sent me there to get blood drawn b/c one of the potential side effects of the meds is an severe drop in the white blood count. Luckily, that was fine and so the not-too-bright ER doc proclaimed me to have "a virus". Okaay.

This morning I slammed my head into the edge of a door. That was fun. At least it wasn't near my eye

[quietmorning]

Good morning Pandatx!

I'm sorry you are still having such a hard time. It does seem to take a bit of time to get ALL the kinks worked out - as one solution seems to breed another kink or two. My husband runs a fan and the window air conditioner at night - so I can't hear my breathing at all. LOUD white noise. Pft. But even though it's loud it still keeps me from listening to my own breath. So perhaps a fan for your room or a white noise machine might be the ticket.

I have a set of sleep phones (originally purchased before I was diagnosed with Apnea so that I could have an early AM alarm without waking my husband.) http://www.sleepphones.com/fall-asleep- ... ign=coupon - and this company also sells white noise if you want to use that. The phones are very comfortable to wear (buy the small - fits a woman's head much better) but tend to get warm in the summer time. I'd love for them to come out with a more breathable fabric for the summer. Wearing with a mask isn't a problem if you put the sleep phones on first and adjust your mask to accommodate.

If this is too much, a white noise machine or just a plain fan may be the ticket.

My last suggestion is going to be a weird one - one of the Buddhist meditations is learning to pay focused attention to your breathing. It's a wonderful meditation technique and can be used to calm yourself very deeply. If the sound of your breath is causing anxiety, perhaps using it to help you sleep even better by using it as a meditation tool might be a good thing. I think you can probably get an audio of the meditation on line - it's a fairly common meditation practice. Practice with it in the evening or afternoon while you are awake and without the mask a a few times listening to the audio - then when you are in bed you won't need the audio to guide you and you can just meditate.

I sincerely hope your medication works well with the cushings. It is a scary thing to know that you could gain weight from the medication (that's where all my extra weight originally came from.) In hind sight of my own weight gain, I've learned to be more compassionate of others who have weight issues. . . I've never been mean, but I never fully understood what they go through. So in this, I'm thankful for this weight gain, it made me a better human being. In the mean time, I try to do what I can to get and stay healthy.

[BlackSpinner]

Do you have someone to talk to about this, preferably some sort of mental health counsellor?
It is as very stressful time for you and I am not surprised it is expressing itself as anxiety over the mask. The mask is a very clear symbol of health issues, it affects your breathing, always a cause for anxiety.

I know you do yoga, do you have a favourite instructor you could let your hair down with?

Can you create a "tape/cd" with some creative visualization to help you "be one with the mask" and help you deal with the anxieties?

[quietmorning]

Do you have someone to talk to about this, preferably some sort of mental health counsellor?
It is as very stressful time for you and I am not surprised it is expressing itself as anxiety over the mask. The mask is a very clear symbol of health issues, it affects your breathing, always a cause for anxiety.

I know you do yoga, do you have a favourite instructor you could let your hair down with?

Can you create a "tape/cd" with some creative visualization to help you "be one with the mask" and help you deal with the anxieties?

+1

[Pugsy]

So sorry you are having more stuff piled onto your already full plate.

You do know that beta blockers commonly cause fatigue don't you? Some more than others. It's going to make evaluation any cpap therapy relief even harder.

My sister was on one and having horrible fatigue with it and finally mentioned it to her doctor and they switch her to a different beta blocker and she said she noticed a lot of relief rather quickly.

[SleepingBetty]

Hang in there, Amy! You've been thrown a major curve ball and it does take time to get things balanced out. Even with simpler thyroid issues, it takes time for the medication to kick in. Yours isn't simple. The sleep issues just complicate it more and it takes time to get that settled, too. Just be kind to yourself. Do what you can and don't worry about the rest. Cut back on your work schedule. You need to take care of yourself right now. (((hugs)))

[pandatx]

xoxoxo

thank you for all the love!

I have mentioned to my husband that maybe speaking with a counselor would help me. but yuck....starting all over again with that does not sound appealing, lol.

Pugsy, I didn't know that about the beta blockers but I'm starting to take myself off of them. As the Graves meds kick in I'm seeing less and less of a need so hopefully that will help.

I do have several meditations/am very familiar with meditation. I think its a great tool. Right now the Graves makes me feel so antsy. I know a lot of this is that. But I will keep trying and look into the Buddhist one for breathing

[BlackSpinner]

I have mentioned to my husband that maybe speaking with a counselor would help me. but yuck....starting all over again with that does not sound appealing, lol.

I am not really talking about really deep therapy, just someone who can do some quality listening and knows how to ask the right kinds of questions. A safety valve, a place to scream.

[pandatx]

That's a good idea

[Dreamingofsleep]

A Place To Scream!! Love it. I think most of us could use that daily

Dreaming