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suffering terribly, help!
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me50 Offline

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Post: #11
RE: suffering terribly, help!
(12-01-2013 08:09 PM)physicsstudent13 Wrote:  last night I tried bpm 8, ti 1.7, max ipap 16cm and feel foggy and tired today.

I think I get less events on higher pressures- I was titrated on the resmed s9 on max ipap 20cm, ps 5/15, epap 5cm, but I still was really foggy like when I lowered the ipap to 12cm. I kept demasking on the resmed, I was also titrated on 18/14 bipap and that didn't work. is there a cure for the disease? I hope I can try the Diamox soon, I read about someone who lowered their centrals with theophylline on another forum, but it's toxic at high doses.
am I suffering from this terrible disease because my neurons are deteriorating or I'm overweight?

a sleep apnea professor told me to raise the min epap to 8cm for my mixed apnea I guess.

Can I please suggest that you have one doctor to handle your apnea because that one person will know your history and be familiar with you, your history, your medications you take, etc., and don't take advice from, say, the sleep apnea professor, IF that person did not see your sleep study and know your history, etc.? please look at previous posts from those with suggestions/questions and try to answer them. Your treatment has to be individualized and what works for some may not work for you.
(This post was last modified: 12-01-2013 08:33 PM by me50.)
12-01-2013 08:18 PM
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physicsstudent13 Offline

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Post: #12
RE: suffering terribly, help!
on my graph I had a spike to 20cm and I demasked 2 nights ago so that's why I lower the IPAP, but patients have told me to have a higher ipap setting a wide open high max IPAP so that it treats your centrals. I can't find a good sleep doctor, the other office wanted to put me on some dental appliance only and then they switched me to the senior doctor and he told me only to lower the settings. I think I have more energy on the auto setting

I've been on klonopin, I don't think it has side effects but people write about all kinds of bad serious side effects on it like brain shrinkage, brain damage, etc

does the resmed work s9 work well for you? it has no ramp and I kept demasking and couldn't tolerate the high settings well, it seems to be a more aggressive machine compared to the Phillips bipap autosv. maybe I can find a way to argue my doctor into giving me a AVAPS phillips
(This post was last modified: 12-01-2013 09:11 PM by physicsstudent13.)
12-01-2013 08:43 PM
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Post: #13
RE: suffering terribly, help!
I was anemic as a child so started taking iron again. there's a caveat, disclaimer-

Over time, high doses of supplemental iron cause excess iron to accumulate in the blood in some people, leading to a condition known as iron overload. Iron overload can cause damage to the liver, heart and other parts of the body. Adult men and postmenopausal women are at highest risk of iron overload, according to the National Institutes of Health's Office of Dietary Supplements.
12-01-2013 09:36 PM
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Post: #14
RE: suffering terribly, help!
physicsstudent13,

1) At the current settings, the apnea is well controlled. As DeepBreathing has pointed out, the number of apnea events that are getting through the defenses is not significant. That doesn't mean that you're not feeling well---obviously you're not. And clearly you continue to have some kind of sleep problems. But those problems are no longer due to untreated sleep disordered breathing. The question then becomes: What things other than sleep apnea (both central and obstructive) might be disrupting your sleep? Other medical problems and/or side effects from some of the medications you are on may be part of the answer. You need to have some long talks with the docs who have prescribed each of your medications. You need to ask them about any potential side affects---particularly ones that may affect your sleep or your breathing. You also need to quit doctor-shopping to find docs who will prescribe things you want instead of the things you need.

2) It sounds as if you have gone from one doctor to another looking for a quick, magic answer to your problems. And when they don't have one, you decide that doctor is another "bad" doc and go off in search of another one. At this point it's not even clear that you're following the advice the docs give you for a long enough time to actually determine whether or not their advice might stand a chance of working. Complex and central sleep apnea are not common sleep disorders and they are not routine to treat. And it can take a while to establish a quality working relationship with a doc when you've got something that's not run of the mill going on.

3) You need to work with ONE sleep doctor over enough time for that particular doctor to actually get a sense of what is happening. Will it be frustrating? Probably---because your problems are not simple and the solution will not be a "quick" one. You've been dial-winging for a long time and dial-winging is just not going to find the "right" settings because it's going to take more than a few nights at a particular setting before you and the doc will be able to determine what's working and what's not. And the sad truth is that it may take several months of using the same settings night after night before your body and mind fully acclimate to them.

4) You need to make sure that the sleep doc you are working with is willing to work with the doctors who are treating your other medical conditions. The sleep doc needs a full medical history, including all the conditions you are diagnosed with and all the prescribed treatments and whether those treatments have brought the conditions under control. For example, you've mentioned that you have asthma (that does not appear well controlled), you are using oxygen (for what? [oxygen is NOT typically prescribed for asthma] how long each day?), you are using klonopin (for what? how much? how effective is it?), and so on and so forth.
12-02-2013 03:20 PM
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me50 Offline

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Post: #15
RE: suffering terribly, help!
I agree Robysue

I asked the following questions and I can't see where they have been answered.

what do you mean that you ordered Diamox, acetazolamide? are these prescribed by a doctor? are you saying you are getting both of them? for what are you going to take them? and, about the iron....are you told to take iron by a doctor?

We can't help someone with this type of situation as we are not medical doctors that have seen this person's complete medical history.
12-02-2013 03:33 PM
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Post: #16
RE: suffering terribly, help!
physicsstudent13,

One more thing:

You seem to be in search of a magic bullet to fix your problems: You keep trying new settings and new drugs in different combinations for a few weeks in hopes that something will somehow "fix" everything. You post here and on other forums about things you've "read" about and keep asking people whether or not this drug or that drug "works" or what the best settings to use are.

The thing is: There is no magic bullet. There is no magic drug or supplement or combination of drugs or settings that are going to make you feel better tommorrow.

On the machine settings end of things: It takes time for your body to adjust to each and every change of settings no matter how small. For most people it takes at least a week to see how the new setting is really going to function; for some of us really sensitive types, it takes at least two weeks for our bodies to sort out the new settings. And it's rare for you to leave a given set of settings in place for more than a few days at a time before you start dial wingin' again.

But much more troubling is your quest for finding a drug combination that will somehow magically make you feel better. You seem to latch on to drugs that you've read about with little rhyme nor reason, and often you don't want to think seriously about the potential risk versus benefit analysis of the drugs or supplements you are talking about taking.

In my humble opinion you need to take the issue of potential side effects of all the medications and supplements more seriously. I'm not recommending that you just stop taking your prescribed meds. But you need to start asking the prescribing docs some real questions about your meds, why they are prescribing them, exactly how they want you to use them, what the benefit is supposed to be, what the potential side affects are, and what the plan is if the prescribed therapy doesn't work as desired.

In this thread alone you have mentioned all of the following drugs and supplements:
  • I got some oxygen and take 5 liters a minute. I have asthma and can't exhale and my O2 varies from 88-94 during the day.
  • In september I was going with manual bpm settings like 8-12bpm and Ti 1-2.0 and taking klonopin and sam-E.
  • I have a deviated septum and started fluticasone sprays
  • I started taking 2 tablets of iron since I was anemic before.
  • I ordered diamox, acetazolamide maybe I'll finally be able to try it tomorrow after years of waiting
  • I read about someone who lowered their centrals with theophylline on another forum, but it's toxic at high doses.

Let's tackle these one at a time, shall we?

The O2: Supplemental oxygen is usually NOT prescribed as part of the usual way of dealing with chronic asthma. Asthma patients typically have one or more maintenance medications, including inhalers, that they use every day regardless of their symptoms and one or more "rescue" medications to deal with asthma attacks. So what asthma meds (other than the O2) are you supposed to use? How often do you use them? Do they help? Are you sure you're using them correctly? And what are their potential side affects?

So how often are you using the O2? In other words, in a typical 24-hour day, how long are you on the O2? Do you use the O2 at night along with your ASV machine?

If your daytime O2 levels are regularly dropping below 90%, your asthma is not well controlled and your asthma medications need to be changed by a doctor who knows what s/he is doing and who knows your history. It may very well take some time (as in weeks and months) to properly bring your asthma under control. But until the asthma is under control, you will NOT feel well and you will continue to have significant daytime fatigue and tiredness simply due to being out of breath so much of the time. The severe and out of control asthma may be responsible for many of your continuing daytime symptoms, including the brain fog, quite frankly. And as another poster pointed out, too much O2 can be as problematic as too little, which can lead to additional breathing problems.


Klonopin. According to WebMD, Klonopin should be used with caution in patients with asthma since Klonopin can adversely affect the breathing in a number of ways. Klonopin is prescribed for a number of things. On-label uses include anxiety disorders, panic attacks, and certain seizure disorders (including epilepsy). Off-label uses include migraines, restless leg syndrome, hyperekplexia, and insomnia. So what was the original reason for prescribing the klonopin? And how well does it work for treating that particular condition?

Note that Klonopin is not a particularly good drug for insomnia since it can interfere with a person's ability to reach and maintain slow wave sleep (stage 3-4 sleep or delta wave sleep). Any chance that the Klonopin is disrupting your ability to get into Stage 3 sleep? Rebound insomnia after discontinuing klonopin is also a serious problem for some users. Klonopin can also worsen existing depression.

Klonopin's side affects also include: weak or shallow breathing; difficulty with breathing; shortness of breath; problems with thinking or memory; trouble with concentrating; being forgetful; trouble with sleeping; sleepiness or unusual drowsiness; and unusual tiredness or weakness. Given your on-going symptoms in spite of using the ASV machine to treat your apnea, it may well be worth talking to the doc who prescribed the Klonopin about whether some of your on-going problems might be Klonopin side effects and whether there may be an alternative medication that might be safer for you to use in light of your severe asthma.



SAM-e. According to WebMD, SAM-e has been available as a dietary supplement in the US since 1999, but it is a prescription medication in much of Europe. Seems like SAM-e is sold as a "cure-all" supplement: Again, according to WebMD, SAM-e "is used for depression, anxiety, heart disease, fibromyalgia, osteoarthritis, bursitis, tendonitis, chronic lower back pain, dementia, Alzheimer's disease, slowing the aging process, chronic fatigue syndrome (CFS), improving intellectual performance, liver disease, and Parkinson's disease. It is also used for attention deficit-hyperactivity disorder (ADHD), multiple sclerosis, spinal cord injury, seizures, migraineheadache, and lead poisoning." So why did you start taking SAM-e? How much are you taking? And have you seen any benefit? Did a doctor recommend it? Do any of the doctors who are treating you and who are prescribing medication know you are taking SAM-e? According to WebMD in high doses SAM-e may cause mild insomnia. More importantly, WebMD says that SAM-e increases a brain chemical serotonin, and hence it should not be taken with most antidepressants.


Fluticasone sprays. These are nasal steroid sprays commonly prescribed to relieve congestion due to seasonal allergies. When used correctly, they usually have little or no side affects, but some people don't find them all that effective at relieving their allergy symptoms either. How severe are your nasal allergies? How severe is the nasal congestion? Do the nasal steroids provide any relief or not? Notably while most people tolerate nasal steroids very well, people who are hypersensitive to them can experience a worsening pulmonary symptoms such as wheezing. You may want to talk to your asthma doctor about whether the Fluticasone sprays are really needed and whether they may be a factor in making your asthma so difficult to control.


Iron tablets. Iron supplements should NEVER be taken without medical supervision. It is very easy to overdo on the iron and most people actually get enough iron from their diet. And overdosing on iron can lead to a medical emergency---as in it can be fatal. So unless you were told to take the iron tablets by a doctor who has recently ordered blood work, stop taking these things NOW. If you suspect that you may have anemia, you need the blood work done. There are many types of anemia, and most of them are NOT due to an iron deficiency. Iron supplements do NOT cure any form of anemia except for iron deficiency anemia, and if that's what you actually have, you need to be taking the iron tablets under proper supervision of a doctor after blood tests confirm that's what you have.


Diamox. (Acetazolamide is the generic name for Diamox) This one's a real puzzler: According to WebMD, the main on-label uses of Diamox (acetazolamide) are to treat glaucoma and to prevent acute high altitude sickness. It can also be used in some situations to provide a short term treatment for edema from congestive heart failure or other medications. It can be also used in conjunction with other medications to control seizures in some forms of epilepsy. And patients with lung disease are cautioned that they may not be able to take this drug.

physicsstudent13, what the heck do you think this drug is going to do for you????? And just how the heck do you plan on obtaining this drug since it does require a prescription???


Theophylline. This drug is a bronchodilator. Given the fact that you say you have severe asthma, considering using this drug actually makes some sense. It's not going to do a damn thing to "fix" your central apnea, but it may be a critical piece of the drug mix needed to get your asthma under control. Many asthmatics use bronchodilators on a regular basis. Are you using one? If so, what one? How often do you use it? At what dose? How well does it work? Those are all things you need to discuss with the doctor who is treating your asthma.

In conclusion:

It sounds to me like you need to quit "shopping" for doctors who will simply prescribe new drugs for you that you want to try simply because you've heard of them and you hope they will somehow "cure" your central or complex apnea.

What you need to do is this:

1) Work with your asthma doctor to get the asthma under control. This could take weeks or months. If you do not have an asthma specialist, then you need to find one. Under ordinary circumstances your asthma should be able to be controlled without the need for supplementary O2 in the daytime. If you must have O2 in the daytime, you need the doc to explain to you why other more normal methods of bringing the asthma under control will not work in your case. You also need to discuss the long term plan: Will you always need the O2---as in for the rest of your life? Or will the doctor continue to try to find a combination of asthma medications that will allow you to manage the asthma without the O2?


2) Tackle the sleep issues with both a sleep doc and the asthma specialist. You need to know how the asthma affects the apnea and how the apnea affects the asthma. You may also need to work on some difficult life style changes concerning your sleep and your sleep environment. Asthma triggers have to be eliminated from your sleep environment as much as possible. It is quite possible that the uncontrolled asthma is making it much harder to adjust to using the ASV machine and that may be the root cause of many of your on-going difficulties.

3) Once the asthma is better under control you will probably have more (daytime) energy and once you have more energy, you will probably start to feel better mentally in terms of the brain fog. Once the asthma is better under control, it may be easier to tolerate your mask and you may find that you demask less frequently. You may also find that your sleep will start to improve once your asthma is better under control.
(This post was last modified: 12-02-2013 04:56 PM by robysue.)
12-02-2013 04:49 PM
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Post: #17
RE: suffering terribly, help!
is diamox a dangerous drug? it seems to be used preventatively for mountain climbers and it may help central apneas. there isn't anything else that works except klonopin and less effective ambien
12-04-2013 01:16 AM
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Post: #18
RE: suffering terribly, help!
physicsstudent13,

Where have you gotten this notion that diamox might help central apneas?

Diamox is prescribed to help prevent acute high altitude sickness. It is also prescribed for glaucoma. Off label uses for this drug include short term treatment of edema (fluid retention) due to some forms of congestive heart failure, short term treatment of edema caused by other medications, and the treatment of some seizure disorders such as epilepsy when combined with other drugs. On the reliable sites I've checked about this drug's uses and side effects, I've run across nothing that even remotely indicates it might be useful as an off-label treatment for central apnea. Diamox also comes with a strong warning that those with lung problems might not be able to take this drug and you say you have severe asthma, which is a serious lung problem. Put these together and it makes no sense to me for you to keep insisting that you want to try this drug: Diamox treats conditions that you do not have and it carries a serious warning against being used by people with lung problems and you do have lung problems. Given those facts, I cannot see how or why any honest physician would prescribe Diamox to you.

If insomnia is the primary reason you were prescribed Klonopin, then it's time to have a long chat with the doc who prescribed that drug too. Clearly your sleep is not very good in spite of taking the Klonopin, and so the Klonopin is of limited efficacy in dealing with your insomnia. Moreover, too many of Klonopin's known side effects are in the long list of things that you continue to legitimately complain about. In particular: Klonopin's side effects include problems with thinking or memory; trouble with concentrating; and being forgetful---i.e. the crippling brain fog you continue to experience may be caused by the Klonopin.
12-04-2013 09:27 AM
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physicsstudent13 Offline

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Post: #19
RE: suffering terribly, help!
Robysue, I see you are writing a lot, but you don't know anything about my sleep apnea. actually the opposite is true I've stuck too long with bad doctors who did nothing or ignored my sleep apnea. those bad doctors should immediately refer me since they don't know much about osa/csa
04-24-2014 03:46 PM
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Post: #20
RE: suffering terribly, help!
(04-24-2014 03:46 PM)physicsstudent13 Wrote:  Robysue, I see you are writing a lot, but you don't know anything about my sleep apnea. actually the opposite is true I've stuck too long with bad doctors who did nothing or ignored my sleep apnea. those bad doctors should immediately refer me since they don't know much about osa/csa

....wow Oh-jeez

Hi physicsstudent13, you won't make a very good physicist if you manipulate the data to get what you want to see.... and not what it really tells you.
04-24-2014 08:55 PM
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