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?
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.
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.
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.
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 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???
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.
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.