I'm reaching out for some advice, trying to find a solution for a problem I've been carrying for over a decade. Hope that the experience from folks in this board would help me find a solution to my problem.
Here are the basics:
For a long time now, I wake up unrefreshed, tired, fatigued, with shortness of breath, severe daytime sleepiness, gasping for air, and with persistent headaches
Normally my sleep varies from bad to absolutely awful. I barely ever I get a good night of sleep.
It has a severe cognitive effect in me: mental fog, memory issues, concentration problems, mental fatigue, visual fog
For years I've been chasing my tail, going from doctor to doctor trying to figure out what was wrong with me. You name the medical specialty, I've checked it. This has been a serious personal hell, and this condition has put a serious toll on my life, personal, professional, etc.
After all these years, one thing that has come clear from all the medical tests is that I have a form of sleep apnea, with mild obstructive apnea, and severe hypopnea. The sleep studies conducted over the last few years show mild-to-severe results, depending on how I sleep that night. Most sleep studies catch me on a regularly bad night of sleep, which provide test results in the mild area. On occasion, the sleep test caught me on a really bad night, which showed severe hypopnea, really messed up.
For your information, here are some examples of the data from two separate sleep studies conducted in the past (i've taken a total of 5 tests in the last decade):
Sleep study from 2005 (on a pretty awful night of sleep)
OSL (blood oxygen level): 71%
AHI index: 51.4 (yeah, you read that right, 51.4!) - mostly hypopnea over apnea events
Sleep efficiency: 81%
RDI awakenings: 2.3/hr
Results: Severe apnea/hypopnea
Sleep study from 2008 (on an average, bad night of sleep)
OSL (blood oxygen level): 89%
AHI index: 5.4
Sleep efficiency: 70%
RDI awakenings: 0.5/hr
Results: Mild apnea
All studies (including 3 other sleep tests) suggest I spend very little time in deep REM stage (less than 9% of my full sleep). That, on top of the low oxygen levels that my brain gets every other night.
One of my doctors prescribed a CPAP machine. It was awful and intolerable for me. It didn't help me much, since I found the whole contraption quite uncomfortable. I stopped using it within a few weeks, as I wasn't noticing any results.
I also underwent surgery to correct a deviated septum, as another doctor suspected that could be the source of my apnea. After the painful procedure, my sleep didn't improve one bit!
Years have gone by, and my apnea/hypopnea keeps getting worse. In recent months the lethargy, fatigue, sleepiness are getting much, much worse. In addition, blood tests taken in recent months show some interesting phenomena taking place, like vitamin deficiencies: very low levels of vitamin B12 and magnesium, extremely low levels of vitamin D (almost depleted), moderate low levels of T3/testosterone.
I will follow up with two different sleep doctors in the next few weeks, to see what they suggest.
Here are my questions for the board in hopes that it would help finding a solution to this hell:
I'm very fit, on the skinny side, and athletic (despite the awful fatigue). What could be causing my hypopnea? On occasion I wake up in the middle of the night, and I can notice quite clearly how slowly and shallow my breath can get.
Any alternatives to CPAP machines to treat this thing?
What should I ask my new doctors so they follow up on my condition till the end? I need a solution to this nightmare!
Vitamin and mineral deficiencies: are they a result of the hypopnea, or could they be the cause? In other words, I know that deficiencies of vit. D and B12 produce sleep issues on some people, but I wonder if these deficiencies (considering I don’t diet and I eat fairly well) could be the cause of my body never getting rested sleep. Basically, my body never quite recovers during sleep and I wake up extremely fatigued. Any insights on this? (PS: yes, I’m being tested for Crohn’s and Celiac diseases soon to discard any malabsorbtion issues; also, thyroid tests don’t show much on the way of an endocrine condition).
My mattress is semi-firm, and I’m on the market for something new. I like firmer mattresses better, but wonder if there’s a specific type of mattress that could improve my sleep. I find Tempurpedic and similar foam beds unpleasant. Any suggestions of mattresses for apnea/hypopnea sufferers?
Thanks a lot in advance. I welcome any help and advice. I feel like I lost a decade of my life in this semi-awake lethargic state.
Last edited by Julius2009; 03-09-2011 at 12:49 PM.
Reason: Typo corrections
I also wanted to list some interesting circumstances in my case:
I usually feel more mentally sharp, less mentally fogged if I sleep 3 or 4 hours as opposed to a full 8 hour night. This makes perfect sense since my hypopnea restricts the oxygen flow to my brain (often as low as 70%). By this logic, my brain will get more deprived of oxygen the longer I sleep.
On days that I have to stay up late and only sleep 3-4 hours, my brain is more awake and alert. Yes, I am tired, fatigued and beat up because of the lack of sleep, but my mind is sharper.
The longer I sleep, the worse my mental focus, memory, headaches get.
I live in NYC. I have noted that when I travel to regions less humid (South West USA, Spain, Italy), all these sleep problems go away. No joke: within a few days after being away to a dryer region, my sleep becomes resting, normal, and my mental focus comes back.
I have no idea how it's related to this hypopnea problem. I have checked with a few allergy specialists to see if there's something in the NYC region causing my problem. All tests conducted show no particular allergies, and certainly not to specific allergens in the North East USA. I'm at a loss here. Can't figure it out.
More and more often I wake up with shortness of breath, gasping for air. Through the day I notice a strange tightening sensation above my stomach, on the diaphragm. It's similar to the odd sensation you get right there when you have hiccups. It's somehow related to the shortness of breath. Any clue as the relation to my hypopnea?
Last edited by Julius2009; 03-09-2011 at 12:34 PM.
hello. Sorry to hear you have been suffering from insomnia for over a decade?.
You do not have any quality of life and cannot function. My experience shows it is hard to treat insomnia and get back to where you used to be able to sleep 8-9 hours and feel well.
1) Have they checked your thyroid? TSH + T4 + T3? Do this blood check now.
If it come back ok perhaps it is time to move to dry area? You said Spain is ok, and italy is ok. I am not sure you know, but italy is not dry all the time, it is pretty humid also it depends what season you are there. Nevada, Arizona?. California?
Not sure, just trying to help you. I know how much you suffer and I can really feel for you. I do not know if that will comfort you but I have severe chronic pain + inability to fall asleep, I cannot rest my neck on the pillow at all time. so I assume you are better off than me. I am also looking for solutions for 3 years already.
So that is all I can offer here.
I wish you all the best in your life. let us know how the TSH + T4 + T3 are.
I am very sorry you could not adapt to the CPAP. I have severe sleep apnea, as the result of 4 strokes. It took me forever to get used to the machine, but there are now so many choices of masks, that I was able to find one I really like. When I put that thing on at night, it is like a signal to go right to sleep. I enjoy wonderful dreams every night, never wake up gasping for air, and now I do not risk the heart failure that is the major side effect to sleep apnea. I would give it another try, it can save your life.
I have pretty much all of the symptoms that you have but mine also included rapid heart rate, feelings of about to pass out, muscle twitches all over the body and a few more.
I was at my wits end being a mother with young children. I was seriously thinking about giving them to someone who could take care of them.
Anyway, I began to feel like this on 5/9. Went to all kinds of doctors and no one can find anything. I was told about a holistic doctor in WI who cured my husbands friend of terminal cancer. They Mayo clinic in MN told him there was nothing that they could do for him and gave him 6 months to live. He is now cancer free and that was over 8 years ago now.
I was on antibiotics for 1 and a half months with no signs of improvement, so I finally convinced my husband to let me go to the holistic doctor on June 27th which is the best thing I could have ever done. I was diagnosed with Mercury Poisoning from my silver fillings. Within 3 days of being on the supplements she gave me, I began to feel a little better. I started to have hope but lots of symptoms where still there. I contacted the holistic doctor and was told that I needed to have the filling removed and replaced with non-mercury fillings to really begin to feel better. On July 11th I had 3 fillings replaced, one of which was a very large filling on a tooth that had partially broken off. One thing that I noticed right away is that the metalic taste I'd experienced often went away. My head began to clear after a couple of days to where I feel ok driving longer distances now. I have more energy and can make a meal for my family without being winded and feeling like I need to sit down to rest. I have been able to go up and down stairs in the house without feeling like my heart is going to beat out of my chest. Over the past week, my heart rate has been slowly going down. I've also been going to the chiropractor which has helped with the tension in my neck and shoulders and my sinuses.
I would suggest going to the doctor and having them check for mercury poisoning, but if they are anything like my doctor is, they will tell you that you can't get mercury poisoning from fillings and they wont even entertain the idea of checking you for it.
I hope this information helps you and any other person who is looking for answers here. I feel so much better although not at 100 percent yet. It has only been a week of detoxing for me and some people take several months to detox after they have fillings removed.
It is worth at the very least looking it up on the internet to see if your symptoms are like those of mercury poisoning. Good luck on your search. The holistic doctor has been a God send for me. My prayers go out to you all as I know first had how you feel.
I am dealing with the same symptoms. I need to contact you right away and discuss this. I need some more insight and if you have done anything that has alleviated your symptoms thus far. I used to abuse pain killers and benzo's however I don't touch that **** anymore and that was in the past, I doubt that i could of compromised my brain stem and that's what my sleep doctor says as well. Currently, my life is a wreck with dealing with this. I can't think, i can't hold a conversation, i'm always tired, and my passion as a body builder is falling to pieces. I also had surgery on my semptum which seemed to improve everything, but now everything is back and everyone thinks i'm nuts.
Last edited by moderator2; 06-30-2012 at 04:31 AM.