wallowing in self-pity :( UPDATE pg. 4 doing better today

I woke up this morning with the beginning of a migraine----having actually had a good night apnea wise (AHI = 0.9) and insomnia wise (slept between 5:30 and 5:45 out of 6:10 in bed with only three awakenings).

And then things careened out of control after breakfast as the migraine went from mild to moderate in pain and I decided to take a nap---lying down in a quiet dark room has always been my major migraine fighter and Keryn, my PA has ok'd the occasional need for a "nap" for fighting migraines. I typically only get moderately bad migraines once or twice a month or so. Often I just gut them out. This is the *first* time since Dec. 30 that I have attempted to take a nap at all.

So I laid down in bed with Kaa on for about 50 minutes. I know I dozed off and on, although how deeply I got to sleep, I can't tell. And I eventually "abandoned" trying to nap, getting back out of bed feeling no better than when I laid down, and unfortunately more alert than sleepy which is what lead to my decision to get back out of bed. The migraine pain came back right away and has intensified. And the migraine plus failed nap has triggered anger about all kinds of apnea-related and CPAP-related angst. I find myself once again in a position where I simply deplore what this therapy has done to my life even as I understand (intellectually) the need for it.

Looking at the data for the nap was a mistake: Kaa score three apneas, five hypopneas, six RERAs, and some snores in that 50 minute so-called "nap". Intellectually I know that some, maybe most, of these events are not "real" in the sense they most likely happened during the extended times I was awake. But Kaa can't tell when I'm awake or not, and so the pressure increased steadily throughout the nap from 6/4 to 8/6 and among other things that led to me abandoning the nap was the fact that I now have a stomach ache (from the air pressure) as well as the headache.

And so while my husband is out playing basketball with the boy scout troop our son once belonged to, I am here wallowing in self-pity (on a gorgeous spring day to boot) wishing that there were someone whom I could talk to face-to-face about my trials and tribulations. It is times like these that I still want to throw Kaa into the trash can (the closet is too good a fate) and go back to my carefree pre-CPAP life where I was functional and identified myself as a middle aged lady in good health instead of the dysfunctional, sleep deprived, fog-brained and unhealthy mess I've become since trying so hard to make CPAP work for me these past six and a half months.

Even looking at my logs and seeing the (real) progress I've made has done nothing to lighten my mood. Rather it has gotten me so much more depressed: Except for the mini-skiing vacation, things seemed better a month or so ago: I was waking up feeling better then and more optimistic. The Feb. 4 titration lead to a welcome reduction in pressure from 8/6 to 7/4. But as much relief as that provided the stomach, which lead directly to real progress on the insomnia, it also proved to be low enough to allow too many apneas through and I started to get clusters of events even though my AHI remained below 5 (and usually below 2.5). And the clustering of events creates its own problems with how I feel during the daytime---mainly in the form of an increase in headaches of all types, including migraines.

So a switch was made to an Auto range: Min EPAP = 4, Max IPAP = 8. 90% pressure level is 8/6 with most of the EPAP pressure increases being due to "snoring" that my husband does not hear. IPAP is at 8cm for about 50% of the time; EPAP is at 6cm for about 30% of the time (and EPAP is at 4cm for about 50% of the time.) And so the stomach is feeling worse these days and I sometimes wake up wishing that I had a "ramp" to hit, but with min EPAP = 4cm, the ramp button is disabled and there's no way to reduce EPAP to 4cm except to turn the machine off and on, which is more trouble than hitting the ramp. And the migraine headaches have not decreased with the depakote, even though I can tolerate the depakote (unlike the topamax and lacmitral which both seemed more effective against the headaches, but which proved to be intolerable due to side effects). And with the return of spring has come tree pollen and my seasonal allergies, which will wax and wane from now until the first killer frost knocks the ragweed out in the fall.

And there seems to be a correlation between the pollen count and the nights I still have a cluster of events. This week for example, my AHI's have ranged from 0.9 to 2.5, but on all the nights, the most of the events have come in clusters containing from 3 to 6 events. There's only one or two such clusters each night; if Kaa has not detected snoring prior to the cluster, the EPAP is still at 4 at the start of the cluster. If Kaa has detected snoring, the EPAP is typically already at 6.

I strongly suspect I need more EPAP pressure to break up those clusters of events. But my current pressure settings are already only marginally acceptable in their effects on my insomnia, which feeds very readily on aerophagia-triggered awakenings. And I've worked too hard for too long to run the risk of seriously going backwards on the insomnia.

And since it is not completely clear if 8/6 is enough pressure to effectively deal with the apnea clusters and since I can only marginally tolerate 8/6 full time, I feel like I am caught between that same dark rock and a hard place that I was trapped in all of last fall: Choosing between a pressure high enough to prevent the clusters but deal with severe insomnia and its affect on my daily headaches and severe affect on my ability to function in the daytime or a pressure that leaves me better able to sleep (most nights) and with an acceptable overall AHI, but with enough event clusters where the daily headaches and pain are still a problem. I truly feel I can't win for losing on this choice. Hence the morbid wallowing in self pity today.

God I wish I had someone I could talk to face-to-face who had some real inkling of an idea of what I've been going through these last seven months because he/she had spent substantial amounts of time and energy trying to make this awful therapy work---and not always succeeding at doing so.

Not looking for anything beyond some sympathy and support. I know that some will offer advice (and I'll read it and consider it).

I feel for you. I honestly think that CPAP is hardest for those who functioned well prior to CPAP, and then have trouble adjusting to it. It is typical for me to feel as bad as you describe feeling on CPAP at its worse, so I have a strong motivation to persist with CPAP with the hope that I'll feel better. But you're in the opposite position.

I hope the migraine resolves soon. I had blinding headaches daily for awhile (that turned out to be side effects of a medication, I think) and that, combined with the EDS and fogginess, nearly did me in.

I know this is a poor substitute for face-to-face support, but nonetheless, we're here for you.

Robysue,
I am so sorry you are suffering today. It is cruel to be suffering on such a beautiful spring day. Even if you are not sleepy, you may try laying down with your mask on and machine running with the covers over your head to block out the light. I know when I had a migraine the light seemed to make the pain worse.
Lying still may help some.

Another thing I have done is to squeeze the skin between the thumb and pointer finger. It is a pressure point and it has helped ease the pain of my headaches some. Problem was for me, to get the pain to subside I needed to relax. To relax I needed not to be squeezing my skin, guess I needed a clothes pin to do it for me. I remember that my head just hurt too much at the time to think of that.

I do hope you soon get relief.

Karen

Robysue, hang in there. You have a whole family here routing for you.

robysue wrote:And so while my husband is out playing basketball with the boy scout troop our son once belonged to, I am here wallowing in self-pity (on a gorgeous spring day to boot) wishing that there were someone whom I could talk to face-to-face about my trials and tribulations.

I've only been using the machine three nights, but I can relate. Much of the second was spent cursing about how I came to bed to sleep, not play engineer.

You'll feel much better once you get some decent sleep. In the meantime, go outside! It won't fix your apnea or your equipment, but it will make you feel a little better. Does exercise help your migraines? For some people it does - increased circulation clears out blood puddles, or something like that. A walk now might even help you sleep tonight.

I am a migraineur myself, and I appreciate the fragility of your sleep more than you can know. I also get very frustrated with CPAP when I have bad nights like I did last night. This ... machine... was supposed to fix all my sleep problems.

Have you ever tried (prescription-only) Imitrex nasal spray? For some people it works really well, for others it doesn't particularly.

Drowsy Dancer

Once upon a time, I had daily migraines. The awful, I want to die it hurts so bad, type that would put you on your knees so I can fully empathize with you. Thank goodness as I have aged they have subsided and now I get them infrequently.

I don't have any answers and hope that you start feeling better soon. You can always come here to cry if it helps.

When I had migraines they definitely affected how I saw what was happening in my life. Everything immediately went from half full to half empty as soon as the pain started. Hope disappeared, life seemed meaningless, effort was worthless.
I still get them sometimes and I know never to make important decisions while under the influence.

Oh, Robysue...I am so sorry. What an awful situation for you. I wish I had answers for you, but I do not.

But we are all here for you and will support you however we can.

I hope that migraine subsides. I've had them myself and feel for you.

I agree with SU..it must be so much harder for someone who was asymptomatic before beginning this whole merry-go-round.

I am so sorry you are having a rough day and I do know what you mean about feeling the NEED to sit down and talk face to face with someone who gets it. I have a couple of colleagues who are "hoseheads" but neither of them really care to discuss it. Friends and family can say they feel badly for you (and I am sure they do) but, like many other things in life, sometimes we just really need to talk to someone who has walked the same path.

I have read many of your posts and you are obviously extremely intelligent and articulate and you give a great deal on this forum. I know you will not give up until you get this thing conquered and I sincerely hope tomorrow is better.

Jeanette

RS, I don't post to your threads often, but I read them all, and was happy about your slow progress. It doesn't seem fair, after all the help you've given others, that none of us can help you stop a migraine.

When you are sick, it is easy to develop a pessimistic view of your future. Remember, you WERE getting better and feeling more positive about XPAP. That brighter outlook should return. You have hundreds of friends here pulling for you.

Every one of your magnificent neurons is precious; you can't quit.

robysue wrote:Not looking for anything beyond some sympathy and support. I know that some will offer advice (and I'll read it and consider it).

robysue, I'm truly sorry for anyone who suffers from migraines. I've never had one, but it has to be horrible.

Now is not the time (for me, especially... as someone who has not experienced a migraine) to "offer advice." Others in this thread who truly understand the pain you're enduring are giving you wonderful sympathy and support.

However, I have, on perhaps 4 or 5 occasions in the seven years I've been using various types of "cpap" machines, experienced aerophagia to a painful degree. So, I do understand how aerophagia could cause a person to have to use sub-therapeutic pressures. Or have to quit using the machine altogether.

Many of your posts have mentioned your aerophagia problem, which plagues you even at relatively low pressures ... as low as bilevel 8/6.

In your current topic, these statements stood out to me:

robysue wrote:
the pressure increased steadily throughout the nap from 6/4 to 8/6 and among other things that led to me abandoning the nap was the fact that I now have a stomach ache (from the air pressure) as well as the headache.

---

The Feb. 4 titration lead to a welcome reduction in pressure from 8/6 to 7/4. But as much relief as that provided the stomach, which lead directly to real progress on the insomnia, it also proved to be low enough to allow too many apneas through and I started to get clusters of events

---

So a switch was made to an Auto range: Min EPAP = 4, Max IPAP = 8. 90% pressure level is 8/6 with most of the EPAP pressure increases being due to "snoring" that my husband does not hear. IPAP is at 8cm for about 50% of the time; EPAP is at 6cm for about 30% of the time (and EPAP is at 4cm for about 50% of the time.) And so the stomach is feeling worse these days and I sometimes wake up wishing that I had a "ramp" to hit,

---

I strongly suspect I need more EPAP pressure to break up those clusters of events. But my current pressure settings are already only marginally acceptable in their effects on my insomnia, which feeds very readily on aerophagia-triggered awakenings.

---

since it is not completely clear if 8/6 is enough pressure to effectively deal with the apnea clusters and since I can only marginally tolerate 8/6 full time,

Those statements made me go looking back at some previous topics you've posted in ... one topic in particular in which two people I respect very much on this board suggested you might want to have your doctor take a closer look at the possibility of:

"Silent GERD" perhaps having caused a weak or damaged esophageal sphincter -- the weakness allowing CPAP air to get pushed into your stomach -- resulting in your bouts of painful aerophagia and wakeups.
_______________________________________

Looking back at the topic in which both -SWS and ozij discuss the possibility of GERD (and "Silent GERD") being at the root of your propensity for aerophagia at relatively low pressures like 8/6...

Study Links Aerophagia and GERD for CPAP Users
topic started by -SWS, Jan. 01, 2011
viewtopic.php?p=552598#p552598

-SWS wrote:Robysue, you might also consider the possibility of nearly asymptomatic acid reflux disease.

-SWS wrote:Anyway, if you're an aerophagia-plagued CPAP'er then you have MORE than 3/4 of a chance of being SYMPTOMATIC of GERD. Guess what, robysue? I have GERD and I'm not even in that 77.3%. I'm not asymptomatic of my aerophagia episodes, but I am asymptomatic of my GERD. That means as a CPAP-using study subject I would have fallen in the 22.7% group who did NOT present GERD symptoms. How's that for interesting food for thought...

-SWS wrote:Ozij recently mentioned this conjecture, which I thought was worth additional discussion:

ozij wrote:Your hypopneas with arousal seen in the sleep study are a result of GERD - which has recently been identified as a cause of insomnia, arousals, irritation of the nasal mucosa and back of throat. People with a weaked lower esophagal sphincter will have more acid reflux -- and more aerophagia.

So you have a sub-clinical AHI, but a high and unacceptable arousal rate. Robysue, I'm actually thinking there's a chance that silent acid reflux disease is your sleep disordered breathing problem and NOT ordinary apnea/hypopnea syndrome. If so, CPAP might not make treatment sense in your case.

__________________________________________

And in another topic just a couple of months ago -- Feb 2011:


viewtopic.php?p=565371#p565371

Slinky wrote:Roby Sue, forgive my lousy memory. Have you ever been tested for silent reflux, GERD? That can make us considerably more prone to experiencing aerophagia w/PAP therapy. After 3 1/2 years on PAP and AFTER being switched to a bi-level (both Resmed and PR S1) I experienced a really bad and prolonged bout of aerophagia. So bad that I HAD to stop PAP therapy for a couple of weeks and then gradually build up to my scripted pressure over several months.

robysue wrote:No I've never been tested for GERD. If the aerophagia continues with the new (lower) pressure, that will be the next step I'm sure.

You see, I've never had even the remotest symptom of GERD (and yes, I know it can be silent) before starting CPAP.

viewtopic.php?p=565435#p565435

robysue wrote:Very rarely do I get heartburn. If I eat too much, I'll get it. If I really eat something way too spicy I'll get it. If I eat something with way too many tomatoes in it I'll get it. But it's not a common occurence. I can go several weeks between attacks of heartburn

I added red emphasis to some of your words in the quote.
____________________________________________

"Several weeks between attacks of heartburn"... sounds considerably more often than what I think of as "Very rarely."

When your current migraine runs its course (quickly, I truly hope for you) you might want to turn your attention to thinking some more about "GERD." Especially asymptomatic acid reflux. If it turns out that undiagnosed, or untreated, or undertreated GERD is indeed an underlying problem for you, and especially if it may have already caused damage, there are ways to surgically or laproscopically repair a weakened esophageal sphincter. Might put an end to your aerophagia problems. At any rate, treating GERD (if you have it) might put an end to at least some of your wakeups.

Hoping you feel better very soon.

Hi Roby, about the migraine have you been following the suggestions in here:

http://www.mayoclinic.com/health/migrai ... N=symptoms


And also Dr. Joel Saper advice here:

http://www.mhni.com/people_staff.aspx

Robysue,

Please read this when you're back in the land of the living. Until then, you have my sympathy and understanding.

My neurologist prescribed butterbur for migraines. I'm much less likely to have them when I take this on a daily basis. It's one of the few herbal remedies that neurologists agree actually works. It's fairly inexpensive, not prescription medicine, and worth the effort of taking a tiny pill twice a day. The brand she suggested was Petadolex, but I take the vitacost 'NSI' brand because I'm a cheapskate and I trust their products.

robysue: You are entitled to wallow!! Migraines are horrible. My wife has sufferd from them for more than 25 years. To have a migraine and have to mask up is too much to ask!! I can offer this: The "triptin drugs have never worked for my wife. She goes into a cold dark room and insists on no noise. Uses a "lone Ranger" mask and the one thing that does help is an ice pack. I pray you get over the migraine quickly!

Bob