Replies to This Discussion

Permalink Reply by Barbara on April 8, 2009 at 1:08am

Hi again everyone. Hope you are all well.
I have been busy with a friends wedding and just now getting back online for further study and understanding. Rough going with CPAP but hanging in there and working with it. I'm going to "TRY" to post the first sheet of each study night. I hope that some of you experts may have time to look over them for me. I have read all the vocab stuff so i am a little less lost. Still it does not look serious enough to have caused my illness I had mentioned earlier. In September had sudden onset of severe fatigue, falling asleep at home and while driving, horrible constant rushes of what felt like adrenaline over entire body usually followed by complete exhaustion, dizziness, near fainting every time i'd bend over or any time head was lowered (like at dentist office), sudden severe onset of muscle weakness - SEVERE. Couldn't lift leg to get into truck. Couldn't walk up more than 3 steps. Couldn't hold phone to ear to talk or hold arms up in shower to wash hair ect........ During Dec, Jan, Feb it was at it's worst. Increase thirst, bursts of tears for absolutely ZERO reasons - happened many time daily during the worst part of this. Constant disoreented feeling of being a zombie. Honestly felt as though I was going into coma or dying. I felt dead already. Gasping for air, shortness of breath, labored breathing yet NORMAL chest xray. The list of other symptoms is VERY long and frankly a little boring and pitiful. In the course of trying to stay out of the hospital during all this and figure it out outpatient I did find that my Vitamin D level was down again to SEVERELY LOW 12. Since I have type 2 diabetes vitamin D should be a minimum of 60. I also found out that my cortisol and DHEA are both low. I am currently in process of having a more sensitive cortisol test done - waiting on results. Reproductive hormones tested ok even though I do have PCO. Thyroid tested ok even though I do have Graves disease which is in remission. I am obese and I lose and gain the same 40 - 60 pounds over and over again.
I'm sleepy and not remebering other things yall asked me to include when i posted the sleep study results. I'll re-read the whole thread in the morning.
Hope this attatchment thing works - fingers crossed.
Good night hugs to you all.
Barbara

Attachments:

• 1st night Sleep Study.JPG, 257 KB
• 2nd Sleep Study.JPG, 237 KB

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Permalink Reply by Mike on April 8, 2009 at 12:14pm

Hi Barbara -- great job posting the studies -- they came out perfect and we can read them fine (or at least I was able to). I'm just a patient like yourself, but i noticed a couple of things. First off, your RDI (respiratory disturbance index) was quite high during the diagnostic study, and appeared to be reduced substantially during the titration study. Also you were getting no deep sleep (stage 3 and stage 4 sleep) during the diagnostic, while you got some during the titration. i would think that getting zero deep sleep day after day every night of your life could lead to some pretty dramatic symptoms -- like falling asleep at the wheel, etc. But i'll throw it open to the pros and others on this forum to weigh in more.

i noticed you're only posting the first pages of your studies. for us to really understand whether to "believe" the report's accuracy, we would also want to look at the other pages -- all the raw data behind the overview set forth on the cover pages. are you able/willing to post that?

Barbara said:

Hi again everyone. Hope you are all well.
I have been busy with a friends wedding and just now getting back online for further study and understanding. Rough going with CPAP but hanging in there and working with it. I'm going to "TRY" to post the first sheet of each study night. I hope that some of you experts may have time to look over them for me. I have read all the vocab stuff so i am a little less lost. Still it does not look serious enough to have caused my illness I had mentioned earlier. In September had sudden onset of severe fatigue, falling asleep at home and while driving, horrible constant rushes of what felt like adrenaline over entire body usually followed by complete exhaustion, dizziness, near fainting every time i'd bend over or any time head was lowered (like at dentist office), sudden severe onset of muscle weakness - SEVERE. Couldn't lift leg to get into truck. Couldn't walk up more than 3 steps. Couldn't hold phone to ear to talk or hold arms up in shower to wash hair ect........ During Dec, Jan, Feb it was at it's worst. Increase thirst, bursts of tears for absolutely ZERO reasons - happened many time daily during the worst part of this. Constant disoreented feeling of being a zombie. Honestly felt as though I was going into coma or dying. I felt dead already. Gasping for air, shortness of breath, labored breathing yet NORMAL chest xray. The list of other symptoms is VERY long and frankly a little boring and pitiful. In the course of trying to stay out of the hospital during all this and figure it out outpatient I did find that my Vitamin D level was down again to SEVERELY LOW 12. Since I have type 2 diabetes vitamin D should be a minimum of 60. I also found out that my cortisol and DHEA are both low. I am currently in process of having a more sensitive cortisol test done - waiting on results. Reproductive hormones tested ok even though I do have PCO. Thyroid tested ok even though I do have Graves disease which is in remission. I am obese and I lose and gain the same 40 - 60 pounds over and over again.
I'm sleepy and not remebering other things yall asked me to include when i posted the sleep study results. I'll re-read the whole thread in the morning.
Hope this attatchment thing works - fingers crossed.
Good night hugs to you all.
Barbara

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Permalink Reply by Barbara on April 8, 2009 at 1:06pm

Hi mike
When I write "you pros" that means YOU TOO!! I mean all you guys and gals who post here..... I am so very impressed with all the knowledge you share with others. No offence to the true professionally trained. I’ll share a quick story. Many years ago I basically saved my life by reading online forums on Insulin and PolyCysticOvary disease. Back then doctors had not been trained in school to even consider Insulin levels with PCO. However thousands of women suffering with the problem sought out every stitch of research from every corner of the earth and started teaching other women what they were learning - thanks to the Web. Many of us back in those days had to trick or manipulate doctors into giving us scripts for treating Insulin problems. Unfortunately many women ended up ordering the meds from some rather frightening places. Nowadays the treatment is so standard you don't even have to go to an Endocrinologist, Reproductive Endocrinologist or Gynecologist. It's so common that anyone with M.D. at the end of their name doles out scripts for Metformin/Glucophage for any disease process that even looks similar to PCO. So trust me when I say..... you are all PROs in my eyes. When you suffer with a problem that can have such a dramatic impact on your life you have a vested interest to study and learn as much as your brain can retain. Often M.D’s. have to wait and wait and wait till they are “allowed” to consider a particular option. Legally tied hands I guess. I value everyone here, M.D.'s, techs, and overly educated patients alike. So please do not hesitate to share your thoughts..... it means a lot to me.
OK, I will try to follow this post with the other pages of the report.... wish me luck.
BTW, the weather is SO beautiful here in Alabama today. I hope you are all getting to enjoy a beautiful day as well.
Barbara

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Permalink Reply by RockRpsgt on April 8, 2009 at 6:08pm

In my opinion this is a very good report. The CPAP definately lowered your RDI which is what we are shooting for. You had absolutely no deep(3 and REM) sleep in your first study. This is why you are feeling so tired everyday. The reason for this is because you have more events as you fall more asleep. Say you are in stage 2 slipping into s3 or REM and you have an event. your o2 drops or you completely stop breathing. This causes your body to react or arouse itself. This reaction causes you to slip back into a lighter s2 if not s1. It is kind of like taking 3 steps forward and 2 steps back. It is because of this action that you are not getting the restorative sleep that comes with the deeper stages. In your CPAP study 29% of your sleep was deep sleep. This is great! It could and will get better with use. 100% evidence that CPAP will help you! Within a week if not sooner of CPAP use you should begin to enter REM rebound and start to repay your sleep debt and thus begin to feel better. Once your body is rejuvinated it will begin to heal any damage that it can on its own. At this point the dr will be able to better evaluate your status and fix what your body could not. If you can I would like to see the hourly breakdown of your titration. Other than that I think that these were both good studies, and I'll be following it to see what Judy, Carol, and the rest of the pros say. Good Luck!

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Permalink Reply by RockRpsgt on April 8, 2009 at 6:27pm

I forgot to add had you gone into REM in your first study you RDI probably would have been alot higher. REM sleep is when we generally see the most events


Rock Hinkle said:

In my opinion this is a very good report. The CPAP definately lowered your RDI which is what we are shooting for. You had absolutely no deep(3 and REM) sleep in your first study. This is why you are feeling so tired everyday. The reason for this is because you have more events as you fall more asleep. Say you are in stage 2 slipping into s3 or REM and you have an event. your o2 drops or you completely stop breathing. This causes your body to react or arouse itself. This reaction causes you to slip back into a lighter s2 if not s1. It is kind of like taking 3 steps forward and 2 steps back. It is because of this action that you are not getting the restorative sleep that comes with the deeper stages. In your CPAP study 29% of your sleep was deep sleep. This is great! It could and will get better with use. 100% evidence that CPAP will help you! Within a week if not sooner of CPAP use you should begin to enter REM rebound and start to repay your sleep debt and thus begin to feel better. Once your body is rejuvinated it will begin to heal any damage that it can on its own. At this point the dr will be able to better evaluate your status and fix what your body could not. If you can I would like to see the hourly breakdown of your titration. Other than that I think that these were both good studies, and I'll be following it to see what Judy, Carol, and the rest of the pros say. Good Luck!

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Permalink Reply by Barbara on April 8, 2009 at 8:58pm

GOOD NEWS!
I took head gear to the medical supply place today.
Turns out the nose thing is a PERFECT fit but the head gear straps were laughably misfitted. They switched me out and said to give them a call tomorrow to let them know if i slept better. Last night I woke up with the head gear thing poking in my eyeball. Not surprising I had another headache this morning lol.
OK here goes attempt to post all these pages. Hope i don't crash the site.

Attachments:

• Test 1 pg 2 of 6.JPG, 104 KB
• Test 1 pg 3 of 6.JPG, 169 KB
• Test 1 pg 4 of 6.JPG, 166 KB

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Permalink Reply by Barbara on April 8, 2009 at 9:00pm

...more pages...

Attachments:

• test 1 pg 5 of 6.JPG, 108 KB
• Test 1 pg 6 of 6.JPG, 143 KB
• Test 2 pg 2 of 6.JPG, 102 KB

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Permalink Reply by Barbara on April 8, 2009 at 9:03pm

..and more...

Attachments:

• test 2 pg 3 of 6.JPG, 166 KB
• test 2 pg 4 of 6.JPG, 164 KB
• Test 2 pg 5 of 6.JPG, 195 KB

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Permalink Reply by Barbara on April 8, 2009 at 9:04pm

..and the very last page.
Sure hope this works.

Attachments:

• test 2 pg 6 of 6.JPG, 147 KB

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Permalink Reply by RockRpsgt on April 9, 2009 at 2:39am

The end results are great! overall I would say it was another agressive titration. I have not been doing this for as long as some of the others, but this is one of the most indepth reports I have seen. I would really like to hear some of the other techs wiegh in before I comment any further.

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Permalink Reply by Ruth Rayceen on April 9, 2009 at 11:04pm

+
Hi Barbara,

Your health conditions have certainly caused you worry, and frustration as you are working to find a solution. You have so many different symptoms, it creates a conundrum for everyone involved. I hope I have read all the threads regarding your problems. I have only been on cpap since late in January, and cannot comment on your Sleep Study. You are fortunate in that you are posting here; the site is large enough to have professional technicians, and experienced people to help you understand your ongoing figures. Yet, the total population is not so large, that your case is lost among the thousands of sleep apena patients posting their problems.

I had a rush of feelings for you, and would like to help. You mentioned that you have Graves Disease' but didn't go into detail. I presume you have asked your doctor if any of your symptoms matches a side-condition of Graves. I have a relative who has been diagnosed with Graves. She has been worried about the excessive fatigue that she experiences. She has had lots of strange symptoms, and her anxiety level is sky-high. You are undoubtedly so familiar with the problems that come with it, that you have checked that out.

I did think of a few minor things that might be of help. You said cpap dried out your sinuses, and that you had so many headaches. The same thing has happened to me. My doctor told me to use a nasal irrigation system, to wash my sinuses. I still have nasal irritation, but because I have kept the sinuses clear, I haven't had a sinus infection this winter - this is a first for me. If you are not familiar with nasal irrigation, post a query and everyone who is familiar with it, including me, will fill you in. This system has helped with my headaches. You also mentioned you have a strange feeling in your head after using cpap. II thought it was a most uncomfortable feeling, I felt like it emptied my head, and possiblly blew my brains right out. That caused more headaches temporarily. .

Many people say nasal pillows masks.work well for them. My first mask was that type. I couldn't get used to it, or keep them in my nares. They caused irritation and sores in my nose, that are still healing. That irritiation also added to my headaches.

Perhaps one of things I mentioned will give you a bit of relief. I will watch for your future posts, Barbara, and wish you well. J.Ruth ,

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Permalink Reply by Barbara on April 10, 2009 at 1:10am

Ruth Rayceen, Thank you for your very kind post. Sorry about your relative with Graves. It can, at times, be a frustrating disease to fool with. I hope they have a good endocrinologist. I’m fortunate in that mine is currently in remission with fairly normal thyroid levels. I will be tested again in about 2 months to make sure I haven’t gone into hypo-thyroidism. You have a good eye to spot Graves and think extreme fatigue connection. Thanks for that reminder. My doctor watches those numbers like a hawk - and should he ever forget you should see how quick I pitch a fit in the lab if they don’t draw for those levels LOL. The lab techs think I’m a nut because I keep them laughing. I let them know they have to do everything I want otherwise I could go into Roid Rage (rage resulting from thyroid abnormalities). It’s actually a real thing but I joke about it rather than worry about it. Tell your relative it’s one avenue of getting your needs met lol. When you write nasal irrigation do you mean the same thing as the old Netty Pot system? The type everyone’s grandmother used? How to describe this.... hummm. It’s a cute little pot you put hot salt water in. Shove the spout of the pot up one side of your nose, tilt head over sink, pour water into one side of nose & water will come out other side of nose. This is the delicate lady like system I do LOL. Is this the same thing you are referring to? If not, PLEASE fill me in on your system - I’d love to try anything new - at least once :). Thank you again for your reply.

jnk, I’ll probably end up being a Jr. tweaker if I don’t see some dramatic changes in health. I can be a little OCD at times. They say the best natural face lift is to sleep on your back. I thought I never slept on my back and was actually trying to start (for the free face lift). I will take your advice and drop the superficiality and shoot for quality sleep. With your AHI at 114 were you a walking cranky mess? Did you ever get any sleep at all? Has your before and after treatment been dramatic? Good info you shared about hormones on overdrive to wake me up allnight - really hadn’t thought of it in that way. That might explain my abnormal adrenal hormone levels. Thank you for your reply.

Rock Hinkle, Your comment about it being an in-dept report with aggressive titration is VERY COMFORTING to me. I did a little reading about lack of deep sleep and one thing that jumped out was lack of stage 4 resulting in burns not healing. During this odd illness of mine I burned each arm once on the oven. Both were burns that should have healed easily but instead both got infected and resulted in a spread of cellulitis which warranted systemic antibiotics. In other words - a perfect fit of problem resulting from apnea. I am determined to relax and give this the time it needs since you and others seem to agree I’m on the right track with CPAP. Thanks again!

Mike, I am going to take a deep breath and let go of some of this anxiety. Thank you for your multi replies and thank you for suggesting I post the entire study. As I wrote above to Rock Hinkle I think yall are on to something focusing on deep sleep depravation. It fits several of my problems. If I read the study correctly there were actually times when I stopped breathing while awake (I think study said ‘independent of sleep state’ - or something like that). I told my doctor that I would be online or watching tv and all of a sudden gasp for air because I had apparently been sitting here wide awake and not breathing. It makes no sense to me at all. Do you know if this would be considered a central apnea - to not breathe even though wide awake? It’s almost embarrassing to admit. How low on the evolutionary scale does one have to be to forget to breathe while awake - makes me feel like a rock. Thank you for sharing your wealth of info!

White Beard, Congratulations on getting your night sweats and night time urination fixed. My doc said same as yours - 90 days seems to be the magic number. One of my doctors said he had patients who felt 15 years younger a week after treatment started........ now wouldn’t that be fun. Thank you for your well wishes.

Sleepycarol, The pollen is terrible here. I hope your allergies are not getting bad. The severity of my headaches has decreased. I am going to turn humidifier up another ½ notch tonight. I do a Netty Pot with hot saline water - it can be helpful sometimes. Other times the only thing that seems to relieve any pain is hot sauce up the nose (or garlic juice). Funny how pain brings out the creative nature in some of us. Thank you for your reply.

Monica, You were right about the head gear. I got a new one yesterday at the medical supply company. Much better fit for my big head. As for sinuses, I am using Netty Pot Saline and I have gotten the humidifier up to 1.5 . When I took it to 2 water was dripping inside my nose. But I am going to try 2 again. I’m impressed you have your up to 4. And YES.... when I turn machine on my ears pop like crazy and the air pressure feels like it might make my eyeballs plop outt. I do the open mouth depressurizing thing a few times to fix it. I agree with you, I feel very lucky to have found this web site. I’m grateful for all that I have learned so far. Thank you for your reply.

Glen England, Yep part of the problem was head gear. I picked up a new style yesterday and it is no longer falling off my head. The old one was too small. When tightened it would fall off (slip off over my hair). I woke up several times finding myself holding the nose piece on my nose with all head gear off my head. New one is better. As far as the in and out pressure issue I have gotten much better with blowing out. My lungs must be getting stronger. Thanks for your reply.

Judy, You were right about the info overload. Combine feeling like cr*p and I thought I’d never get to a place where I wasn’t overwhelmed. But I am getting better day by day. Thank you for all the info you shared. I really appreciate it.

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