Input on lack of results

[izzyb]

I would like to hear some thoughts on my (common?) situation. I have been on BiPap for just over one year. My doctor promised on that first examination/diagnosis that he would make me a new person including getting skinny. Need I say that this hasn't happened? I can't figure out why there hasn't been an improvement though since I know the machine is working as far as keeping the apneas away. I can tell the difference in the way I sleep if I nap without it.

The specifics are: I am still tired and sleepy during the day. I want to go to bed as soon as I get home from work. I practically do since I don't do anything but watch tv or read, but I do these thing only to avoid staring at the walls (lack of interest in anything). I certainly haven't lost any weight (I have actually gained about 5 pounds), since I have no more energy than before. My memory and concentration haven't really improved. I thought maybe they had a little in the beginning, but now I don't think so.

My AHI is usually around 1.5 and my leak rate is 40 or less. I think those are good. I'm not sure about the leak rate.

I do have Dystymia (sp) - a low grade chronic depression. I have always attributed my lack of energy, lack of concentration and tiredness to that, but when I found out I had sleep apnea, I thought maybe that was really my problem and treating it would also help the depression. No such luck. I am the same as I have always been only more so as I get older and heavier.

Doe anyone have any ideas as to what else could be attributing to the lack of change for me? The only thing I can think is that I am just a low energy, depressed person and I always will be.

[ozij]

Izzy,
Thats' sad - but I think there's hope:

Are you taking care of mouth leaks? Mouth leaks can give you a low AHI, with bad treatment - since the air pours out of your mouth instead of pushing against obatructions.

Whether your leak number is good or not really depends on your pressure. The Comfort Gel's planned leak rate is never supposed to reach 40, not even at a pressure of 20 cm. H2o.

Did you consider trying another mask?

O.

[Slinky]

So do you take any medications for the dysthymia? Do you not have any interest in doing things you liked to do or is it a matter of you just don't have the energy to do them?

Do you commit to doing something that sounds like fun w/your friends and then back out at the last minute because you are just too tired? Sleep apnea/dysthymia or sleep apnea/depression can be a matter of which came first, the chicken or the egg?

So you have the M Series Auto BiPAP and the ComfortGel mask. What are your pressure settings?

The good Lord helps those who help themselves so we're gonna have to give you a good kick in the butt to get you up and about to helping yourself instead of resigning yourself to a life of low grade depression and sitting or laying around gaining weight.

There's a reason you were scripted a BiPAP instead of a straight CPAP. Do you have any known lung problems? I assume you've had your thyroid checked? Blood work done for anemia? B12? iron? potassium? nutritional status? Have you been checked for reflux/GERD? Do you have allergies?

What medications are you taking? Medications could be contributing to your being so tired. You may have another concurrent sleep disorder.

Do you have a copy of not just your doctor's dictated report (usually 1-2 pages each) from both your sleep evaluation study and your titration study but also the full scored summary data reports (usually 5+ pages w/condensed graphs each)??? If not, ask for them. If you are in the USA you have a legal right to them under HIPAA.

There may well be some clues in those reports as to why you are not doing better on BiPAP. Central apneas, spontaneous arousals, PLMs ...

[DreamStalker]

Get your doc to check out your Thyroid T4 and T3 levels.

[Guest]

Whew, slinky! Those are a lot of questions, but I'll try to answer them.

Dysthymia: I have been off and on antidepressants for years. They mostly just make me tireder and sleepier, but they sure keep me from getting upset over things (they take away your emotions). I was on Effexor for about nine years and got tired of being tired and hoped the BiPap would "cure" me and went off of it. Another reason is that I found out that Effexor was probably what was causing my blurred vision and eye pain which isn't great when you look at a computer all day. So I recently tried Welbutrin which was great at curbing the appetite and giving me energy, but it almost immediately caused the same eye problems, so I moved on to Cymbalta. I thought it was going to work, then the sleepiness and eye problems started again. The Welbutrin and Cymbalta also caused insonmia and I have always had problems with sleeping to begin with. So now I am at the point of living without ADs. It sure makes getting along with people difficult though.

Do you commit to doing something that sounds like fun w/your friends and then back out at the last minute because you are just too tired?

Hey, do you know me?! I've moved past that now. Usually I just don't commit.

My pressure is 16/11. I was at 14/10 until about a month ago and they raised it since I don't seem to be having any results.

I don't have any lung problems (I do smoke). I have had my thyroid checked a few times over the years and again a few months ago. They say it is normal. I have anemia fairly regularly, but I take the Niferex and that takes care of it until the next time. I haven't had anything else checked that I know of.

I take Nexium, birth control, a multi-vitamin and other supplements.

I think my normal mask leak rate is about 25. I don't know whether my 40 average is okay since I don't know how much above 25 is good. But, if my AHI is 1.5, wouldn't that mean my leaks are okay?

That's about it.

Thanks, izzyb

[Guest]

This is a thread that I will be checking daily and I hope you continue here and post your efforts and results. I know what you are going through because I am there right now.

I have felt the way you do all my life. I have been getting so much help here and I am really optimistic about whats going to happen, but I also have something in the back of my head telling me that my problems are not isolated to this. I also have a bipap, etc, and I am just starting to get it right, but have much work to do. I didnt mean to hijack your thread but I can relate, I was told that this was going to be "the fountaint of youth" and "you dont even know the person you are capable of being" and other wonderful statements, if they are true. That remains to be seen.

Good luck and stick around, the people here are not only well informed and helpful, they are also motivating, and a tight community. If you are going to find help online, I believe it will be here.

[Guest]

Two questions from me...
1. What birth control are you on?
I took Yasmin for about 3 years and the last year was H*LL!
My OBGYN said it's supposed to help with "moods", but sometimes backfires.

2. How long have you been taking Nexium?
My husband had probs taking Nexium...
Side effects of Nexium:
from purplepill.com's FAQ's

Nervous System/Psychiatric: anorexia, apathy, appetite
increased, confusion, depression aggravated, dizziness, hypertonia,
nervousness, hypoesthesia, impotence, insomnia, migraine, migraine
aggravated, paresthesia, sleep disorder, somnolence, tremor, vertigo,
visual field defect;

Just a couple of thoughts
Hope you feel MUCH BETTER VERY SOON!
jjposey

[ozij]

I think my normal mask leak rate is about 25. I don't know whether my 40 average is okay since I don't know how much above 25 is good. But, if my AHI is 1.5, wouldn't that mean my leaks are okay?

No, that's exactly my point. A low leak accompanying a mouth leak will leave you with a low AHI, and no treatment for you apenea because the machine doesn't identify an abostruction - the air is flowing freely -- out of you mouth instead of into your lungs.

Re Anemia: Research has show that the precentage of Gluten intolerance in anemic women is about 5 times (or more?) more that in the general poplations. Doctor's tend to think - "OK, she's mesntruating so she has low grade anemia". Have it checked too.

O.

[izzyb]

Thanks everyone for all the suggestions:

My BC is ortho-tricyclene. My doctor won't put me on anything stronger since I am 49 and smoke. I feel it does help my moods a little (not enough). I think a stronger one would be even better. I have been on Nexium for about 6-7 years. I was on Previcid before that. I can't go even one day without a Nexium or I have heatburn all night.

I don't understand why my AHI would be good if I were having leaks. Wouldn't having leaks cause me to have apneas which would cause my AHI to be high?

I have read up on the gluton intolerance and thought about it a lot. It is definately a possibility. I don't know if I can give up bread though. If I could I would have already done it to lose weight. I am addicted to it.

My doctor was concerned about me having anemia so often so she sent me to have a colonoscopy. They removed one polyp and that was that.

"Nervous System/Psychiatric: anorexia, apathy, appetite
increased, confusion, depression aggravated, dizziness, hypertonia,
nervousness, hypoesthesia, impotence, insomnia, migraine, migraine
aggravated, paresthesia, sleep disorder, somnolence, tremor, vertigo,
visual field defect;"

I sure do have some of these. I don't know which came first though. I just read up on paresthesia and I have that happen sometimes. I just didn't know what it was called. Some of these I have when I am on an AD. I sure haven't had the anorexia.

I have read up on the thyroid tests and I asked my doctor about the Thyroid T4 and T3 level testing, but she didn't seem to know what I was talking about. I think she said something about it testing them all, so I dropped it.

slinky, I do have a copy of the typed report.

Off the subject: Why does it say I have no spelling errors when I click spellcheck even though there are words underlined in red.

[izzyb]

I just went to the askapatient website and read some comments on Nexium. I am going to stop taking it immediately. I don't know how I will get by without it so I am going to research alternatives. People listed so many of the same symptoms I have. This may not be what is causing some of my symptoms, but I am going to give it a shot. The problem with troubleshooting meds is that they seem to have all of the same symptoms.

Just realized that I did not take Previcid before Nexium, it was Prilosec.

[jjposey]

izzyb, My husband quit the Nexium and muddled through for awhile. He eventually started using Zantac otc and read that it had similar side effects so quit that. Right now he's taking an otc acidophilus tablet that seems to be helping him quite a bit.
He is being treated for depression (although I think he needs to be treated for bi-polar disorder). We have seen some improvement since he got off the Nexium/Zantac/etc.
I hope you find something that helps!
jjposey

[Snooze_Blues]

I just went to the askapatient website and read some comments on Nexium. I am going to stop taking it immediately. I don't know how I will get by without it so I am going to research alternatives.

One thing I've heard of people trying is elevating the head of their bed a few inches, so you are sleeping with your feet a bit lower than your head. This can help stomach acid stay where it belongs. You can buy bed elevators lots of places. Here's one. I'm not recommending it, just a link to show what it is:

http://www.organize.com/bedrisers.html? ... PAodJiSlxA

I've heard that many of those "acid fighter" drugs may actually mask symptoms of GERD and make it worse, although I'm no doctor, not even close. I found that losing 15 pounds made what had become a new issue for me (GERD) go away. I had gained about 65 lbs through my late 30's and all my 40's after a knee injury (motorcycle crash) and a couple surgeries. A few lbs here, a few there... It also seemed to fuel my lifelong dysthymia, led to more eating, less exercise, less social activity, less confidence, you probably know the drill. I think that when my stomach reached a critical mass of protrusion (aka: beer gut got too big) I suddenly started having heartburn, especially after meals, or while in bed if I had a big supper or snacked late at night. When my beer gut went down my heartburn disappeared.

( The rest of this post also has little to do with xPAP so you might want to stop here. )

You are not alone with dysthymia, although you probably feel like you are. Many experience the same or similar feelings, behaviors, and the corresponding bodily manifestations of weight gain or whatever. I'd probably still be in my hole, or worse, if two of my good friends hadn't indirectly and unintentionally intervened by matching me up with one of their cousins for a blind date during one of my "good periods". Since I hadn't picked her as "my type", it was one of my first healthy primary relationships and led to a waning of depression and motivation to put a little more effort into my life, which continues to nudge me in the right direction. I never knew what a good relationship felt like until I had one. Ironically, I had unconsciously worked hard all my life to be with exactly the wrong type person.

I still struggle day to day sometimes. I hate those AD meds and take them only as needed when things start looking dark again. When I emerge from the fog and the side effects become worse than the benefits, and I'm on a fairly even keel again, I have to stop or I simply feel bad in a different Rx way. I know what they say about how some say to use them continuously and all for best effect, especially M.D.'s who have never taken them, although many psychologists are less than enthusiastic about AD drugs in many cases, especially early in treatment. I've probably heard it all during decades of weekly talk therapy sessions alone, in groups, as a couple, and using many different meds.

Here's what's helped me some, but like I said, I still struggle:

a. Exercise that is semi-fun so I can force myself to do it on a regular basis. I bicycle, which also means I probably have a death wish , but I have difficulty in the winter months when forced to use a tread mill or bicycle trainer (yuk). Exercise is a must IMO. In one stroke it attacks many of the dysthymia goblins. It stimulates endorphins, it raises my esteem, I burn calories, I increase muscle tone, my hormones seem to balance and my mood improves, I am tired at night so I tend to go to bed earlier (a big problem for me is staying up half the night), I sleep better, it sometimes dulls my appetite, but other times it's the opposite, but I sometimes have more will power knowing I've worked hard exercising and I don't want to just throw away the benefits eating a chocolate bar. MMMMmmmm.

b. Find a fulfilling and loving primary relationship. This one is tuff and I have no advice as I just got dumb lucky, but this is probably the single most emotionally stabilizing event in my life. At age 47 I married for the first time. I still can't believe I did it. I was a confirmed bachelor, cynical of ever finding a compatible, or less than monstrous, mate. I was determined to hold out until I met someone that didn't make my gut churn in vulnerable situations, and that just didn't seem like it would ever happen. Complications in relationships can sometimes be related to childhood abuse or trauma, especially if you have a lot of anxiety with your depression. Depression is believed to be the result of repressed anger and anxiety the result experiences sometime in the past that were for some reason or other beyond a person's ability to process emotionally, could be age related or severity of trauma related or even something else (I'm also not a psychologist, not even close). Depression and anxiety often go hand in hand. If you have those issues, there is more hope available these days with a couple drugs combined with a skilled talk therapist, although if abuse, or any trauma for that matter, occurs before age 3 it becomes more difficult to treat, but treatment is still available. I have had nightmares most of my life and night terrors during periods of intense stress. Reading a book a couple weeks ago by Christopher Raoul Carranza has helped me understand why. Oddly, people who have night terrors usually find themselves in dysfunctional or abusive relationships and may have chronic depression or chronic anxiety. But there is hope.

c. Adhere to a healthy, structured routine with regular meals, waking, sleeping, and rising hours, exercise, and all the stuff most of know we should do, like flossing our teeth every night, but find reasons to not do. Sometimes I just have to force myself to do these things. Prioritizing can be important with limited energy. Do the things that give the most bang for the buck when feeling really down, but don't just resign and do none of them. That can lead me into a spiral that is hard to pull out of. Going through the motions has the same affect whether you feel good about something or bad about it. You did it, that's all that matters on one level even if you didn't feel like doing it, like eating your broccoli.

d. Get a hobby that at least seems halfway interesting if not engaging and preferably one that isn't addictive or expensive, like gambling or diamond collecting. Common sense should be applied. Directing the mind toward something can sometimes automatically direct it away from depression or anxiety, at least temporarily to get out of a hole and regain your footing. At least that's the theory.

e. I force myself to pick some event that interests me and do it, like a concert or a rodeo with bull riding, or a bicycle tour with other people, fishing, or hiking. Planning with friends or having a spouse that is more motivated than you also helps a lot. My wife loves to travel, go out to eat, visit relatives, and lots of things. If not for her, I'd sit at this computer until I "threw a blood clot".

d. (This is my current tack.) Get chronic medical problems attended to. I have my second sleep study tonight. I will either find out that I'm doing great on the 6 cm H2O CPAP therapy I've been on for two months, or I'll be prescribed a different machine.

e. Find a depression support group. Living in CA offered a lot of this sort of thing. 50% of Californians have had psychotherapy and are very open to support groups. Where I live now is more of a "boys shouldn't cry" type area. I wish I could find one of these around here, although it might be depressing to hang out with so many other depressed people. I know it is a joy to hang out with my wife who is the opposite of depressed. I'm convinced that there is a physical component involved, as in brain chemistry that may have been altered semi-permanently in some cases (like mine). It may have come as a result of decades of untreated depression or it may be the cause, I'm not really sure.

f. Continue to educate yourself about depression by reading books. A therapist recommended I read a book by cognitive therapist proponent David Burns (years ago). It helped some and I've heard that cognitive therapy is one of the most successful for depression. In fact, I just googled Burns and visited his web site. I think I'll be reading his latest book, "When Panic Attacks". I hope they have it at the library. I seem to have moved a bit away from depression and a bit towards anxiety. I'll see what Dr. Burns has to say about that. The symptom list on his home page seems to be right out of my journal. Here's his web site, I'm not affiliated: http://tinyurl.com/yp26lw

g. Find your own balance of things that work for you. It may or may not include any of the above-mentioned things that work, at least partially, for me. But don't surrender to bummerdom. You never know when a simple twist of fate can change your life completely, like me meeting my wife in my 40's. Maybe I'll win the lotto next. How's that for hopeful?

[ozij]

I don't understand why my AHI would be good if I were having leaks. Wouldn't having leaks cause me to have apneas which would cause my AHI to be high?

My guess is you're not feeling the effect of the treatment because you are having apneas.

The machine only records apneas when the air flow changes due to obstructions. But with mouthleaks, your machine doesn't "see" the obstructions you're having and can't report them.

O.

[Guest]

This is a thread that I will be checking daily and I hope you continue here and post your efforts and results. I know what you are going through because I am there right now.

I have felt the way you do all my life. I have been getting so much help here and I am really optimistic about whats going to happen, but I also have something in the back of my head telling me that my problems are not isolated to this. I also have a bipap, etc, and I am just starting to get it right, but have much work to do. I didnt mean to hijack your thread but I can relate, I was told that this was going to be "the fountaint of youth" and "you dont even know the person you are capable of being" and other wonderful statements, if they are true. That remains to be seen.

Good luck and stick around, the people here are not only well informed and helpful, they are also motivating, and a tight community. If you are going to find help online, I believe it will be here.

HelpMeBreath, sorry I didn't respond sooner. Thank you for the encouragement. It is nice to know someone else like me is out there. I have been coming here for the past year or so since I have been on BiPap, but I mostly just read. I feel like I have read about every possibility as far as treatment not working and know that it usually comes down to mask leaks. I just don't think I have leaks, so I thought I would just throw the whole story out there and see what happened.

[izzyb]

That was me. I forgot to log in again.

izzyb