newly diagnosed - my story

[amyandtoby2011]

First, I'm not sure if any of the topics are categorized, so I'm sorry if this is in the wrong place.
That said, I wanted to introduce myself, and share some of my story so far.

My name is Amy. I'm a preemie, blind almost since birth. I have a guide dog of six years who means the world to me. I have several minor health problems (allergies, hearing loss/reconstructed eardrums, chronic sinus trouble, anxiety/depression).

I've snored for years. Ever since I was a kid (as early as five or six), I've been told that I snored very loud--I kept a friend awake once because she wasn't used to it.
I had my adenoids removed when I was a kid, but not my tonsils (they're pretty big, though).
In more recent years, maybe the last seven or so, I've noticed a change in my energy levels. They've been going down, I've been feeling tired more than I used to, have a much harder time doing or wanting to do things because I'm so tired all the time. I've also had difficulty with focusing, and wondered if ADD wasn't something that was just never looked at when I was a kid, but that's always been here, lurking.
My primary doc recommended a sleep study. I've thought about having it done before, but then was focused on other difficulties, and forgot to mention my fatigue and love of naps.
He recommended the study early this month, and, after a consultation the other week, I went in two nights ago for the study.

Here's a rather long email I wrote earlier to a few friends explaining how it went, and some of my thoughts after.


This is pretty long. I wrote out my thoughts and reactions to certain things from the other night at the sleep clinic. I didn't describe where they attached the wired to me, what the hotel was like, etc, but there's other stuff here. I just thought I'd share how things went and how I'm doing.

I had my first sleep study two nights ago.

They did a split study (part of the night just me sleping hooked to the electrodes, part of the night using the CPAP machine), but they didn't have enough data with me using CPAP. I have to go in next week to retake the test. Hopefully they'll find a good pressure then.
I've suspected for a while now that I had some sleep problems-I'm always, always tired, and i've known for years and years that I snore.
But my doctor didn't explain details to me, not beyond the number of events (is that per hour?), and my desats (blood oxygen saturation) going down, and by how much. I called my clinic today to request another doctor. I've had several experiences with this same doctor trying to tell me that I should not bring my guide dog and that she's supposedly heard this from one of the directors, breezing in and then back out of the room after talking mostly to me, interrupting my answers to her questions, or not answering the questions I asked. (The guide dog was not even an issue with anyone else I spoke to in the clinic, including the techs who were there while I had my study, only this one doctor, it seems).

I need someone like the wonderful tech I had the other night, who will listen to my numerous questions, and go over things with me. I'm blind and cannot, that I know of at the moment, read my own report. I want to when this is all concluded and they've found what works for me.

Part of me is terrified to use the mask, but part of me longs for it. I've had a fear of face masks, of anything ove rmy face, for many many years, probably having to do with all the surgeries I've had, and my being a micropreemie hooked up to the vent the forst six weeks of my life. So when I went in Monday night, I didn't think I'd be able to even manage to wear the mask, let alone sleep with it! I did sleep with it, for about three-four hours.

I did bring my guide dog to the study, even though several people close to me thought I should not. The tech was of the same mind as me, that Toby is such an integral part of my life that I needed him there, both for my own independence, and to help me ground during intense panic and/or anxiety attacks. My tech understood this, and had me focus on my dog several times when I was shaking, and things were really difficult for me. I'm glad I brought himto the clinic-he acted as another living being I had to care for, which kept my mind off my own fears when I needed that the most.

Aside from my fear of masks, and trying to get used to the different types of pressure the machine could give me, I had a really hard time with the electrodes being placed and removed from my scalp. I'm very sensitive-I feel everything that's happening to my body-and the cold, sometimes deep pressure, mild scraping sensations across the rough gauze while it was being moistened and then removed, really set my nerves to jangling. I have tactile and maybe some other defensiveness anyway-certain textures, smells, and other things can make me really afraid for what may seem like no reason. Tuesday, all I could think about was, rough texture on my head from the gauze, cold sensation when my tech was putting the paste on, but mostly, the rough texture was what freaked me out.
A friend suggested I take tylenol to help combat what she said was my brain interpreting the rough textures as low pain signals. This helped some, surprisingly. Later that night, I took my as-needed anxiety med to help me sleep. I was terrified to sleep, because,

now that I know just how many times I have trouble on average per hour when I sleep, I was afraid to do so without the machine. But I have for two nights now, and I feel draggy and exhausted, as I have for years.

I go in for the retest Monday night next week. I'm going to be working on some techniques to help me through the tactile defensive parts of the wiring up, and I'm going to tell my tech, if I need to. I did not like feeling that out of sorts for almost two days. It was very unsettling, and I do not want a repeat.

I hope with all I have that they find a pressure that works this next time, and that they won't have to raise it too much from what it was when I woke up at the clinic.

When we tried the masks that night before I went to sleep, at first I admit I was just having fun looking at all the "new toys". I love gadgets, and these were no exception. I recognized a couple masks from what I remember a friend using a few years ago. I asked if I could put them over my face. He said I could, so I did, just a little here and there, and I wasn't too afraid. It was when the machine was hooked up to the mask, the air was blowing through, and i knew that that was going to be over my face soon, that I started trembling.
What we did was cover the mask until I had to move my hand or fingers from it (depending on the shape, since some only go in the nose). I made myself do it, sometimes taking breaks, other times just trying not to freak out. I found out quickly that yes, with the mask sealed on your face, the pressure is actually lower than it is when it's just blowing air, kind of like a fan, and not on you at all. This helped me a lot. My tech would hold the mask away from me, sideways, since the rush of air to my face from a couple inches away would close my throat and I'd get even more afraid. He put it on a couple times, and a few other times, I took it and did it myself, quickly. Then, later, he would put the mask on me, then turn on the airflow. I liked that way best of all.

For anyone who wants to know, I tried CPAP, BiPAP, and EPR. CPAP is continuous pressure, BiPAP gives more on inhale, and less on exhale, EPR does similar to BiPAP but much more subtly and in a way that's much more natural-feeling, not such a sharp contrast.

They started me out at a pressure of four. I sat up and read for a while, then slept with it. They moved me up over those three or so hours to twelve. My tech seemed to think this was a good pressure for me, but I think they want to see me on it longer before they compare which of the two studies and pressures are a good fit.

I found CPAP to be too strong, too constant. I couldn't swallow, make it go down for a reprieve even for a moment. BiPAP felt good at first, but then in the night, all wrong. I kept having to burp and felt like I was swallowing a bunch of air. On EPR, none of those things happened. The pressure felt less, but like it was doing the same thing as the other two. I could talk if I needed to, swallow, etc, and I didn't feel like I had a head full of air. It was much more natural. Also, my tech recommended the full face mask, but an extra-small because of my face size. This is because of my sinus trouble and tendency to mouth-breath. He was concerned I might open my mouth with the nasal masks. I actually liked this small mask. It fit neatly over my nose and mouth, and not much else. The head straps were snug without being super tight (again, extra-small). In some ways, I think I found the mask comforting, once we switched to EPR.

I was disappointed when I found out I needed a retest. I wanted, despite all my fear, and waking up with a horrible case of the shakes, to take my mask home and get started. I don't like sleeping like this, now that I know that my apnea is severe, and why I've been tired for so long. I want my life to change, and i'm ready. I'm terrified in some ways, but I am not surprised it's come to this. My snoring has been a part of my life since I was very young.

I'm ready for change. I don't feel awkward talking with friends of family about this, and i don't feel denial. I think I've known for a long time that something was wrong. Now I want very much to fix it. I don't expect a miracle cure, but I do hope to feel better, and to sleep like a normal human being again, that's if I ever have.

This next part is a sort of update I wrote just a bit ago.

Ever since the sleep study, I've felt very out of sorts. Problems with texture, sound, and smell are normal for me, but these are too much. I thought I was better earlier today, but then I went bowling tonight. Lots of light, a body that doesn't throw or aim well, lots of noise with people yelling, the equipment running at the end of the lanes. I'm blind, and I play with this blind bowler's league, but it's very hard for me, and I honestly don't know how they expect almost or completely blind people to bowl well-I know I don't.
But I got home, and I just kind of crashed. While I was out tonight, I almost cried in public. I don't do that easily when I'm around people who don't seem to receive that well.
I don't like how on edge I'm feeling. Frazzled and easily upset by anything sensory-related. I'm terrified that when I go on Monday for the second part of the study, that I'll just freak out with anything placed or removed from my scalp.
I'm going in to talk with my therapist before the study so I can work on some relaxation and grounding techniques.
I've always had a very, very sensitive scalp. I was a preemie baby, and they had to put the IV's on my scalp--anywhere else I'd pull them out (I was feisty and very active). I've always had trouble not tolerating certain types of hair brushing etc, though I love scalp massage and having my hair played with. I've known for years that I had sensitivity, but nothing could have prepared me for this level of unease.
Whenever I look up anything about sensory disorder, autism is mentioned, and/or ADD/ADHD. I was a preemie, and this is what is the cause of mine, not autism/ADHD. I have focus problems, but I suspect they are from years of sleep apnea (going to rule that out first, and go from there).

When I've gone online and tried to find anything about sensitivity to the placing/removing of electrodes, I haven't found anything. I don't know if I'm alone in this.

Well ... that's my story so far. I'll update as things happen. I wish it was all done, though. I'm ready for better sleep.

[Gaga58]

Hi Amy...welcome to the forum. I think you'll find you've found a great place to get lots of information and get you prepared for your sleep therapy! I was lucky in finding this site before I got my equipment and the battle with all that. I've only been on cpap about 2 months and while it does take a bit getting used to, I think you'll find if you stick with it you'll feel much better in the long run. You have a lot of other things going on, but being sleep deprived just adds to all that! I can't attest to the electrode thing as, short of being annoying, it didn't really bother me, but I would think being blind would automatically make you highly sensitive to just about all other sensory problems. Hang in there...this does get easier!

[jmcanzo]

I called my clinic today to request another doctor. I've had several experiences with this same doctor trying to tell me that I should not bring my guide dog and that she's supposedly heard this from one of the directors, breezing in and then back out of the room after talking mostly to me, interrupting my answers to her questions, or not answering the questions I asked. (The guide dog was not even an issue with anyone else I spoke to in the clinic, including the techs who were there while I had my study, only this one doctor, it seems).

That Dr sounds like a jerk. 1st off by law they have to let you have your service dog. It has also been proven how therapeutic a dog can be. I work in a hospital and we have a therapy dog that goes room to room daily. He is owned by the hospital and works 40hrs a week. We were the 1st hospital in our system in Michigan to get one, and now slowly they have been getting a dog for each of our hospitals. All the employees love to see him daily, he knows most people he sees daily. I always pay alot of attention to him, so when he sees me he knows he is getting a belly rub and drops to the floor!

Good luck with the CPAP. With all the other issues you state, hopefully this one will work out for you, without much issue. Funny there is a post earlier from someone who yelled and screamed about how they hate the cpap. They should read your post and how positive you come across even with all your other burdens. It is really an inspiration.

[amyandtoby2011]

It's very true-the service dogs are allowed by law. There are places, like certain parts of a hospital, food prep areas at public restaurants, where dogs are not always allowed, or not allowed at all, for sanitary or other reasons, and I know sometimes this comes up. Example: someone not taking their dog to the opporating room, perhaps the ICU when visiting someone, depending on the situation, but I'm not entirely sure which places would apply.
But in this case, I was in a hotel, it was not a steryl environment, and they clean the rooms after each patient has been there. I'd think that's how all medical facilities are...
Considering that the only issue I have had was from the one doctor, and no one else, I think there were other concerns, and it was hard not to feel invalidated or like the therapeutic need for my dog (i.e., not just to be beligerent and prove a point), was really there, and needed to be considered. My tech even said that he completely understood about my dog, and he loves him! He's pet him and cuddle him when he wasn't wiring me up, etc. Not all the time, but at what seemed like appropriate times to me. And he would encourage me to focus on Toby when something was scary for me.

Thank you both for your replies. I did, sadly, read that angry poster's thread yesterday. I was baffled. I want my machine, I want, despite a lot of fear/anxiety, to get used to it, and I want to sleep better. I long to sleep better.
I want to tell people what's been going on with me, sometimes so much that I need to stop, and think which people would be appropriate for that telling. I get that way when I feel good about something in my life.

Between the blindness, and the preemie birth, I agree there are very obvious heightened senses. They're not better-I have a mild/moderate hearing loss for example-but I notice things. You learn to rely on the other senses much more than you otherwise might.

When the doctor came in, all I was told is that I have severe sleep apnea, forty episodes, ten non-specific episodes. I tried to ask if they saw what caused my trouble, and she said yes, but then just repeated the numbers. There was no information about what happened specifically. The only other information I got was that my sats went down to 88.
A lot of the information the rest of you have, or seem to him, I do not at this point. Maybe I wrote this earlier, but, I don't want an hour or two of someone's time, I just want to know what's going on, perhaps with too much detail, but it's a detail level that, though scary, is important to me.
Yes, I have been afraid to sleep since I got home. I've had to remind myself that nothing in my body has changed-I just know how hard it's been all these years and why. It's validating, but also daunting. Fifty an hour seems like a ton, until I read what some people here have described. It gives me perspective in a way, but there's still so much I want to know.
Good to not feel alone or like I can't ask my questions.

Thanks again, and sorry I'm so long-winded

[TalonNYC]

Be as long winded as you want! We have folks here who write books, so you will not be out of the ordinary writing long posts.

Remember that you've just been diagnosed with a disease. There are stages to such events, and they can cause wild swings of emotion. People always react differently to getting a diagnosis of O S A and your reaction isn't uncommon. Even people who are not sensitive to textures and pressures can find themselves terrified at sleep studies. We're not naturally wired to accept being wired up to a machine while we're trying to sleep.

Go easy on yourself. Remember that this is a process that takes nearly everyone months to get comfortable with. The first sleep studies and the first few nights of the therapy are indeed the worst of it. For me, it took about a week to get over the shock of the diagnosis, which was - of course - exactly when they had me in for my second sleep study L O L. After my diagnosis I was shocked, then depressed, then angry. I railed against my doctor who took forever to get anything done. I ranted against the D M E (the folks who get you the equipment) on how un-cooperative and downright un-empathetic they were to me. Eventually, though, I accepted that I have a disease and that I need to treat it.

You have the added fun of having other emotion-swinging problems. Make sure your therapy team is there as you go through this, anxiety and depression can become major barriers to O S A therapy if you don't get help during the process from your therapist/psychologist and other team members.

Take each step one at a time. Don't be afraid to take a step back when you need to, as long as your overall progress keeps moving forward.

Also remember that you're not alone at all. Every one of us in this forum went through what you are going through now. Nine months ago I was in your shoes. I had a sleep study that was carried out by very professional people who knew what they were doing, but didn't give me that impression. The sleep-center techs were great, but the doctor I had was horrible. Extremely knowledgeable, totally un-helpful. Luckily I have a great friend who was one of the earlier O S A patients here in the US, and he gave me some great tips. I also found this forum, and found an absolute army of people who gave me so much help that I was initially overwhelmed by information.

This gets better. The mask becomes just like your pajamas, pillow and sheets. Just something else you put on your body at night that your brain learns to ignore. You start sleeping through the night, you start being more awake and alert during the day. Things that you thought were normal for you will begin to taper off, and things you thought were gone from your life will start to come back in. Usually, that process of tapering and coming back is great, but it doesn't happen overnight. It does happen, though. There will be some things that don't work, and a lot more things that do. Reach out if something isn't working, and share what is working, too. Always remember, just like any other medical condition, O S A is something you can control. It is something that you can live with, and something you don't have to allow to ruin your life.

People in recovery talk about taking life one day at a time. We talk in terms of one night at a time, which is much more fun.

[Pugsy]

Just wanted to welcome you to the forum. Good to see you here.

[Meowser]

Amy, welcome to the group.

You will find alot of useful information here and alot of great people.

I've been at this for about a month, so I'm right there with you in being new. Without this forum I dont think I would have such a positive attitude as I do. I've accept my hosehead fate and let it work for the better.

Your story is an inspiration. You sound like you are a strong woman who has faced alot through your life and you are here, strong and have a good furry friend by your side. And as it was stated prior, Toby is allowed with you by law.

I wish you the best of luck on your new journey. And we are all here to help one another.

[n0hardmask]

Amy, I commend you on your tenacity and uncompromising attitude. Your dog(s) are very fortunate to have you as their owner. You care for them as you do for yourself, and with your challenges, those are excellent character attributes.
Your post is already a bit of an inspiration on this forum. we here are pulling for you as you can hardly imagine, as this is a very lonely disease that seems to be much more stigmatized than it ought to be.
Do keep coming back, and try to be patient as you do your next sleep study.. we don't usually walk out of the clinic with our equipment. Generally we have to wait for a sleep doctor's analysis and prescription, then find an equipment supplier (DME) and order the equipment. Just want you to not expect miracles, especially in this treatment. It takes the long and sometimes laborious haul to achieve the results we need.
God Bless you and feel free to keep sharing your questions and concerns.. there are those among us who have some answers; the rest of us are brimming full of compassion and caring.

[Emilia]

Welcome Amy and Toby! You could not have found a better place to tell us your story and get the help you need. I know I speak for all of us... that we'd love to see a picture of Toby! ....your wonderful service dog. They are angels on Earth for those who need them.

You'll get through this and soon be sleeping well and feeling better. Has any ENT ever suggested you remove those large tonsils? They could be part of the problem, but may not resolve all the issues. I was thinking that getting those out may reduce your pressure needs. Just a thought and something you can discuss with an ENT consult.

Good luck... we are here to listen and help.

[msradar65]

Welcome Amy and Toby! You have come to the right place. I have to agree with everyone else, your dog goes where you go!! No exceptions. We look forward to hearing how it all goes.

This group is wonderful. I would definitely find a doctor and a tech that are willing to work with you to help you make the adjustment. Keep in mind you are paying for a service and for all it cost you should get the service you demand.

This is a big adjustment even for someone without the challenges you are dealing with. I commend you for your perseverance and spirit!

Keep us posted and we all love to read the experiences of others...so its ok to be long winded.

[kteague]

Hi Amy and welcome. Just want to encourage you as you go through this process and let you know that there is a possiblity that after your body and brain recovers from the years of stress, you may find you are a bit less sensitive and have less anxiety. When one has long term nonrestorative sleep and is flooded with the stress hormones that accompany sleep apnea, it can feel like the nerves are on edge. I for one will be interested in you reporting back to us after using cpap for a while and letting us know if you've seen any improvement. Best wishes.

[amyandtoby2011]

You guys are wonderful. Thank you many times over.

How long after the study can I expect to wait before I get my machine? And what are non-specific respiratory events? My doctor never explained this to me. *boggle*

I called the clinic yesterday, and I was contacted by them this morning. They had to go to my doctor and request the doctor change (why they would go to her and not one of the directors or someone who handles such things I don't know). She's ging to meet with me on Tuesday for the results of the study's completion, then I'll be seeing another doctor she said would be a good fit for me. We'll see how it goes, but I don't mind telling you that I find the idea of meeting with her again to be very awkward. I don't do well with conflict, and I don't know if there will be any confrontation-I sincerely hope not.

My dogs are my world, as are my close friends and family, though family has not often been understanding of my emotional needs. I would not have left Toby at home, unless they really wanted a study with no interruptions beyond the ones they provided while checking on me, asking me to switch positions, etc. But even then, it would have been very hard. I told them that if there were troubles with him there, and we found it was simply too stressful for him (he is extremely atuned to my every upset), I would leave him home. He was anxious sometimes. My tech described him as having "those big worried eyes" sometimes, and other times just watching as if to say, "What are you doing?" Other times, he was okay. But he always watches any medical work that's being done to me. Always. He's a gem of a dog, and I should have licensed him as a therapy dog years ago, he's that even-tempered and gentle.
I was blessed to have him at my side, and then to my surprise, on my bed. I thought they wouldn't like that, but they were okay. I'm grateful.

Do any of you know why I got the shakes when I woke up/was awakened after the study? I was in REM sleep when it happened, the pressure was higher (at 12), and it was cooler in the room than the night before, but I still don't understand the level of anxiety and shaking. I haven't responded that strongly with a physical reaction to anxiety in many years.
(Not looking for professional advice, just thoughts. I'll be talking with my therapist about a lot of this.)

And I agree. I think that my sensitivities are affected, at least in some ways, by such poor sleep. They may even be affected a lot. I'll be sure to report how I'm doing with that, with focus, and anything else.

I wake up the last few days, and I feel so tired. I know it's time to get up, start my day, care for my dogs, but I feel so tired. On Tuesday, after even a few hours on CPAP/EPR, I was semi-awake for a few hours, and didn't really feel that dragging-around thing until later in the day, but even then, it wasn't dragging, it was just fatigue. But not like this. It was subtle, but I felt it, and I want more of that.

[TalonNYC]

How long it takes to get the machine differs depending on how fast your doctor interprets the results of the test, which D M E you use and what insurance (public and/or private) you have.

For most people, it is between one and two weeks.

[kteague]

While many can empathize with the situations of others, it is more than hard to fully comprehend another's emotions and individual reactions in a given circumstance. I'm trying to be mindful that it's not really my understanding anyone needs, I just need to respect what they say about their situation and not devalue their expression with my outsider rationale. I am not comfortable with confrontation either, and find it easier to dismiss things, but sometimes it does everyone a favor to bring unacceptable treatment to light. Maybe your visit with the doctor will be better than the last, and turn out to not be uncomfortable at all. Keep us posted.

[Meowser]

How long after the study can I expect to wait before I get my machine?

Just like Talon stated... depends on when your results come back, doc puts in the script for the machine to your insurance's DME and when the DME calls....

My study was on Sept 14th. Results came back the 20th and on the 23rd I got my machine.... (just to give you an idea of turnaround time)