Ok, what should be my next step?

As some of you might know already, I was diagnosed with severe obstructive sleep apnea, with an AHI of 88.2. I sometimes snored even when not fully asleep. I'm sure my nasal congestion is a big part of my apnea. I have been using CPAP (both full face mask and nasal mask) for a month now, and keep using it because of the benefits, but I still don't feel good at all. I wake up in the morning so foggy, dull achey, and useless that I want to get back in bed. It's like my head is at the wrong pressure. I don't feel fully awake during the day, and night is the only time I feel half normal. Still tired then. My head is so sensitive to mood and stress of any kind; it's hard to function. Naps don't help; often I don't sleep and get that bad feeling back more. Many nights, I only get a few hours of sleep, even with the CPAP. I'm waking during the night somewhat out of breath, with chest pain, or just plain restless. Hyperventilation happens, both when I first go to bed and after. Even when I get more sleep, I'm waking up badly.

I also have a depressed mood that seems forced upon me. I have high anxiety.

What should be my next step? Continue using anxiety medication and give the CPAP more time? Ask about other things like Chronic Fatigue Syndrome? Ask about sleep aids, or stimulants like Provigil? Try different masks? I really need some kind of change in how I feel; tired of being so fatigued.

Matthew:

A month really isn't a very long time as far as this CPAP stuff is concerned. Some people report almost instantaneous improvement, and we all hold onto those stories as a promise, but for many of us, it takes a little more work.

I see that you've made a number of posts, but I haven't read them all, so forgive me if I'm asking you to repeat yourself.

Are you getting treatment for the depression? It's possible that it's a result of sleep deprevation, but it's still real. For me, finding the right counselor made a huge difference and he put me onto a psychiatrist who worked with him on medication to help.

Your comments about hyperventilating make me wonder if the pressure you're at is right. Do you feel you got a good sleep test? Were you able to sleep for at least a few hours?

I didn't see any data about your mask, so I don't know whether to ask about mouth breathing. If you're using a nasal mask and your mouth opens up during the night, you're not getting effective therapy.

I'm sure you'll get advice from some of the more experienced users on the forum, but let me reinforce that a month is not a long time. CPAP is a huge change in lifestyle and it will take some getting used to. For me, information was a key ingredient to success. I'm a tweeker. I like to customize everything, so CPAP is just another opportunity to learn, modify, fiddle. I don't think you have to be as involved as I am, but you do need to take responsibility for it, because even if your Dr. and DME wanted to, they can't get inside your skin.

Stick around and learn from those who are a little further down the road than you are. I'm confident you'll do much better.

Had your nose checked for a deviated septum? I'd make sure of the physical first.

Hi again,

I am getting treatment for the anxiety, but not the depression. I take Ativan - which makes sleep worse, but helps me be calmer (if sometimes drowsier) during the day. I have brain fog problems similar to those here:

http://apneasupport.org/viewtopic.php?t=8228&start=30

My sleep doctor set the pressure where I supposedly had no apnea events in the study - at 9. It was at 11 at first, but he lowered it when I complained about continuing symptoms. He thought the higher pressure was arousing me.

I find it harder to even harder to fall asleep with the full face mouth, but yes, my mouth might be opening. Maybe I should try it again.

Have not had my nose checked for a deviated septum. My ENT just looked up my nose.

All of my problems started after a virus in November, which I find strange. Could the virus have ramped up my apnea to a level where I suddenly felt a lot worse and had sleeping problems? I noticed my brain just suddenly felt strange one day during the virus. I still have the abdominal discomfort, and my bowel movements are very active in the morning, and then get kind of constipated with trapped gas feelings. Sometimes this adds to my misery at night.

I will try to think positively!

Deviated septum - that's a great suggestion!

I thought I'd be a mouth breather because I routinely can't get enough air through my nose, so I started with a FF mask. I found that my allergies were better, due to the fine filter in the CPAP so I bought a nasal interface, the F&P infinity, which plugs right into your nose (nasal prongs). It keeps my nose open just as it keeps my trachea open, and there's less on my face.

Matthew, I read your other thread and I wonder if there's not some other medical issue in play. Hopefully your physicians are all trying to take a broad view. The downside of specialization is that sometimes they focus too narrowly. You may have to remind each of them what the other is working on. Your primary care physician should be taking that role, but it doesn't hurt to stay on top of it yourself.

Hyperventilating... do you use CFLEX? I found that I couldn't use CFLEX without Hyperventilating (I am an asthmatic).

Yep, use C-FLEX. It seems that for some reason, I can't help being aware of my breathing when trying to sleep.

you might want to try turning the CFLEX off

Oh, one other thing:

My ears are bothersome and have annoying tinnitus. I tried wearing ear plugs last night to try to relieve the pressure, and there might have been a slight improvement in my sleep.

The anxiety might be making me conscious of my breathing. It's something I can't train myself out of yet.

Get a machine that records more that just compliance data - then both you and your doctor can make better decisions.

Ativan, aka Lorazepam is a benzodiazepine.

http://www.benzo.org.uk/manual/bzcha01.htm#9

Prof. Heather Ashton wrote:Memory impairment. Benzodiazepines have long been known to cause amnesia, an effect which is utilised when the drugs are used as premedication before major surgery or for minor surgical procedures. Loss of memory for unpleasant events is a welcome effect in these circumstances. For this purpose, fairly large single doses are employed and a short-acting benzodiazepine (e.g. midazolam) may be given intravenously.

Oral doses of benzodiazepines in the dosage range used for insomnia or anxiety can also cause memory impairment. Acquisition of new information is deficient, partly because of lack of concentration and attention. In addition, the drugs cause a specific deficit in "episodic" memory, the remembering of recent events, the circumstances in which they occurred, and their sequence in time. By contrast, other memory functions (memory for words, ability to remember a telephone number for a few seconds, and recall of long-term memories) are not impaired. Impairment of episodic memory may occasionally lead to memory lapses or "blackouts". It is claimed that in some instances such memory lapses may be responsible for uncharacteristic behaviours such as shop-lifting.

Benzodiazepines are often prescribed for acute stress-related reactions. At the time they may afford relief from the distress of catastrophic disasters, but if used for more than a few days they may prevent the normal psychological adjustment to such trauma. In the case of loss or bereavement they may inhibit the grieving process which may remain unresolved for many years. In other anxiety states, including panic disorder and agoraphobia, benzodiazepines may inhibit the learning of alternative stress-coping strategies, including cognitive behavioural treatment.

Depression, emotional blunting. Long-term benzodiazepine users, like alcoholics and barbiturate-dependent patients, are often depressed, and the depression may first appear during prolonged benzodiazepine use. Benzodiazepines may both cause and aggravate depression, possibly by reducing the brain's output of neurotransmitters such as serotonin and norepinephrine (noradrenaline). <snip>

"Emotional anaesthesia", the inability to feel pleasure or pain, is a common complaint of long-term benzodiazepine users. Such emotional blunting is probably related to the inhibitory effect of benzodiazepines on activity in emotional centres in the brain.

Benzodiazepines cause both physical and emotional depenedence Do not ever stop taking them abruptly.

Prof. Heather Ashton wrote: Therapeutic dose dependence. People who have become dependent on therapeutic doses of benzodiazepines usually have several of the following characteristics.

1. They have taken benzodiazepines in prescribed "therapeutic" (usually low) doses for months or years.
2. They have gradually become to "need" benzodiazepines to carry out normal, day-to-day activities.
3. They have continued to take benzodiazepines although the original indication for prescription has disappeared.
4. They have difficulty in stopping the drug, or reducing dosage, because of withdrawal symptoms.
5. If on short-acting benzodiazepines (Table 1) they develop anxiety symptoms between doses, or get craving for the next dose.
6. They contact their doctor regularly to obtain repeat prescriptions.
7. They become anxious if the next prescription is not readily available; they may carry their tablets around with them and may take an extra dose before an anticipated stressful event or a night in a strange bed.
8. They may have increased the dosage since the original prescription.
9. They may have anxiety symptoms, panics, agoraphobia, insomnia, depression and increasing physical symptoms despite continuing to take benzodiazepines.

O.

A thought on your anxiety meds.. there are many anti-depressants out there that also treat anixiety also. Maybe an idea for you. Won't hurt to check into, maybe killing 2 birds with one rock or something like that.

I have been on cpap now for over a year. I also have severe OSA. I also thought cpap would be the magic bullet that would take care of everything---fatigue, decreased libido, you name it. After one year, by monthly avg. ahi has gone as low as 0.2. My latest 12 mo. printout showed several days at 0. So, you would think I feel great, right? Well, I don't. I feel better. Much better. But, I have other problems. Without knowing your age, I can't suggest more, but I can tell you what I'm doing. I've had a complete CBC, TSH, c-peptide, A1C and other tests done. We're trying to rule out things one by one. I am prediabetic, which can be cured by diet. That's what the last battery of tests showed. The next step is testosterone level, then a battery of cardiac tests since I have a family history of CAD. All I can tell you is that cpap made me feel much better after several months. If you read some of my early posts, I thought of giving up because it seemed like I was going nowhere. However, with help from this forum (and encouragement) I found the right combination of machine settings and mask to get me optimal benefit from cpap. I think I sleep better than many people who don't have OSA or are marginal for treatment. I still have problems. Goofproof encouraged me to get complete testing done and that's what I'm doing. I'm 58 and don't expect to feel 20 again, but I should feel better than I do. However, with effective cpap, I'm no longer a zombie and have the energy to pursue further testing and treatment.

Bottom line--- if you're getting good numbers as time passes and you still feel really crappy, don't give up the cpap, but explore other reasons for your fatigue and other symptoms. It is a journey. I think you will find that it is the rare person who will say to you that cpap took care of all of his or her problems. Some of us have problems made worse by our OSA and some of us have found that by treating our OSA we can get to the root of our other problems.

I wish you luck. This forum is a true life saver with very kind people. Keep asking questions.

Hi thimarine,

I'm only 31, and feel dependent because of how I feel. I should be out there making a life for myself, but I don't feel up to it. It makes me more depressed. Thanks for your optimism. I know that not knowing for sure causes more stress.

BTW, my testosterone level was quite low. It's the only thing besides apnea found in tests so far, besides a slightly high liver-afp level. But it was close enough to normal that my doctor wasn't concerned.

Perhaps I should get myself off of Ativan.

Matthew--- In today's Chicago Tribune there is an article entitled "Deficiency in Disguise--- Low testosterone masquerades as depression". It's by James Bradley and can probably be found on the internet.

As for the Ativan, if you have depression, it's going to make it worse. But, you have to be titrated off of it. I certainly don't want you to go into withdrawl from stopping your Ativan.

Matthew:

Right now, you're working on at least two physiological hurdles. That's a very real, very worthwhile expenditure of energy. Don't minimize it or be apologetic for it. That's part of making a life for yourself that you need to do right now. Sure, you got to it earlier than some, but later than some others. These are real issues that demand real effort. If you'd been in a car accident and had to spend time in rehab would you feel the same way about it?

I'm no expert on drugs, but some of the anti-depressants I was on had some negative side effects such as you're describing. Talk to your doctor about alternatives. I think the psyc drugs are really hard to get a handle on, since the effects are hard to quantify.