Questions about My Progress

[anglett]

I have been on CPAP therapy for seven weeks now and have a couple questions and am basically just looking for some guidance, and I am more comfortable hearing feedback and getting answers to my questions from people who have already gone through what I am going through.

The first week with my machine I had some trouble adjusting because I didn't have a humidifier and I was struggling with the dry air but once I got it, it started to get better. I went through nights when I would wake up and snatch the mask off coughing and not put it back on or get up to go to the bathroom and be so sleepy I wouldn't bother with it. Now I am proud to say I faithfully sleep with it straight through the night a full 7.5-8 hours. In the mornings I still have trouble waking up. I hit the snooze and its like pulling teeth to get out of bed.
Will this change or is there something I can do to make myself more refreshed so I can be a little more alert? Maybe I am just asking for too much? This is something that I have always struggled with and hate. I feel so groggy and out of it when I first wake up and I end up having to rush getting dressed for work. Now once I've taken a shower and everything I'm pretty much ok. On the up side, I've noticed I have become a little more alert in the mornings. Before CPAP I would walk into work so sleepy I couldn't walk straight. I'd walk down the hallway to my office and hope no one would see me because they'd probably think I'd need a drug test.
During the day I have also noticed I am more awake where I use to get very sleepy after lunch time. I also would fall asleep on the couch watching tv when I got home during the week and I haven't in the last five weeks. I do tend to get really sleepy though right before bed time some nights so I head to bed early if I do. One thing I enjoy is when I put the mask on I usually can't keep my eyes open for five minutes. It's like a lullaby.
I also monitor my BP because it has been uncontrolled for the past year even with meds. For the past three weeks though It actually has gone down a good bit. It's stays around 145/86 where it was 190/100 or 160/95 on BP medicine.

As far as my data goes, I check it every week and it looks good as far as I can tell from what I have been taught on here. My average leak rate maximum was 7.2 and 95th percentile 3 and median is 0 for the month of December so far. Some of that leak I believe is from me using my machine to dry out my hose after I wash it. I am not sure if it records that as data but I use the leak test button to check for mask leaks. I probably should not be doing that if it does mess with my data. Does anyone know if it does? I looked at my graphs and the leaks were higher the day I did it but wasn't sure if it was just a bad night or was from that. If it is messing up my data then yes I'm an idiot but I wasn't feeling good like always and it was an easy way of drying it out. My AHI is .5 and just looking back at each day I don't think anything ever went over 1 or 2. I ordered pad a cheek liners and they are awesome and so much better than just the mask. I think they have helped so much with the leaks. I also have tried a few other tricks from some research from other posters on here. I've had to tie down the mask with pantyhose because I tend to toss a lot in bed so I ended up leaking all over the place and it woke me up constantly.

Lastly the whole reason I even did the sleep study is my headaches. My doctor was thinking that the CPAP therapy would cure them. I have an appointment scheduled in January to see a Neurologist because they aren't improving at all but are getting worse. If any can give me any suggestions on what I can do about these headaches please help. My doctor has been giving me pretty big dose of hydrocodone due to the level of pain I am having but it doesn't work. It makes me a little loopy for about 30-60 minutes and that's it. He also prescribed 800 mg ibuprofen but it doesn't really work either. I'm taking Topamax to try to prevent the headaches but they last 24 hours a day with no relief. It's not like the morning headaches that most sleep apnea patients have. They start when I stand up from the bed and they continue all day until I go to bed at night. Previous doctors have put me on prescription NSAIDS, tension headache meds, several migraine meds, etc. All this about my headaches may be OT, but I thought I'd ask in case someone went through this and may be able to suggest something. I had found three other headache based forums but I only got one response to my plea for help. Maybe just being on the machine for 7 weeks isn't enough time? I just think that since my headaches last all day and are so painful its hard to function they are more than just side effects of sleep apnea.

I believe I am having some trouble with my sinuses. I was at a friends house last week and her husband had a bad sinus infection, and we were comparing notes on headaches and where his hurt and it got me thinking. I emailed my doctor and asked him about it because I have pain and severe pressure around the top of my nose between my eyes and my whole forehead. My head hurts other areas but this section has been kicking my butt the last two weeks. My doctor started me on an antibiotic and Flonase to see if it would help.
With my humidifier, I still haven't figured out what to setting to put it on. I have noticed that when I set it at 4.5 or higher the next day I cough constantly. What could cause this? I've looked at several posts about the humidifier and sinus infections to try to do some research. Is it possible the CPAP is irritating my sinuses? I have been using a saline rinse each night because I have been a little stuffed up for a while now. I think that with breathing the humid air at night and dry air during the day my sinuses are getting screwed up. Could the saline rinse cause a sinus infection? I saw from a few old posts on here people have said rinsing has caused them but are they for real? I don't even use a lot of the rinse just enough to help me breath a little better because I have a FFM so it's not like I'm doomed without my nose. I'm not a fan of things going up my nose but I wanted to try the Nettipot but am afraid I won't like it or be too chicken to use it. As far as my humidifier goes, I don't know what setting is best now because of the sinus issues and the headaches. I read that sometimes higher settings can cause headaches and then also congestion so I bumped it up to three tonight to see how it would work but I think any higher will cause the constant coughing. I also have a deviated septum but I'm not sure if that has anything to do with my problems or not. I was also wondering if I should see an ENT instead of a neurologist or both?

I tried to put the questions in bold. I had a couple of topics in here I realized so maybe I should have done a couple of posts so forgive me I'm done with staring at this computer screen, but any replies THANK YOU!

[Guest riorican]

Welcome Anglett. It sounds like you are off to a really good start. I'm envious of all...7.5 to 8 hours a night, low AHI and low leaks. You've already seen some improvements in your energy level and alertness during the day. You've made a smooth adjustment.

Someone will give you feedback on the sinus questions. I haven't dealt with sinus issues...do use saline spray and humidifier to prevent nose from drying out and nosebleeds. I think my morning headaches were lessening after about one month on the hose. You're taking a proactive approach by keeping in close contact with your doc re: those headaches. That's the most important thing you can do right now.

Welcome to the forum and give yourself time to continue the adjustment and let the therapy do its thing.

[Pugsy]

Will this change or is there something I can do to make myself more refreshed so I can be a little more alert? Maybe I am just asking for too much? This is something that I have always struggled with and hate.

Always been this way huh? Then it may not be OSA related and the cpap machine can't fix things that aren't related to OSA. We would like for the machine to fix everything but it is really designed to fix one thing and any side effects with improvements in other areas are just extra pluses. This one thing you may have to just give it some time. I don't know that I buy into the whole "sleep debt" thing but it is possible and with time you may wake up more alert...then again you might not. Could just be the way your body is. Some people just take a little longer to get the morning cobwebs cleaned out. I am this way. When I sleep good and sound..I have more cobwebs but once they are gone I am much better than I would be without the machine.

If any can give me any suggestions on what I can do about these headaches please help.

Again it is possible that these headaches are not related to OSA. Typical OSA headache from low Oxygen levels will be present immediately when you wake up. Ask your DME for an overnight pulse oximetery to evaluate any possible Oxygen level drops during the night that might explain the headaches.
I did this because while I had a reduction in the killer headaches (wake up with one), I still had some headaches that were annoying. I happen to have a bad neck so I have that complicating factor. We have determined that most likely my bad neck is my main headache culprit.

So get an overnight pulse ox test will help eliminate low Oxygen levels as a culprit..then you can move on to investigate other possible causes.

Is it possible the CPAP is irritating my sinuses?

It is very possible that the air going into nasal cavity is affecting the nasal mucosa and thus creating "sinus" symptoms. Some people need more added moisture and some people need less added moisture.
You may need to experiment with more and less numbers on the humidifier to figure out if you need more or less.

Sinus pressure...can be from the nasal mucosa swelling causing congestion. Nasal mucosa drainage doesn't mean there is a sinus infection. One can have horrible sinus pressure discomfort from the nasal mucosa passageways to sinuses being swollen shut. Feels like a "sinus infection" when it really is just bad congestion with clear drainage as opposed to yellow or green copious drainage from a real infection.

You might consider adding a decongestant of some sort at night to see if that helps.

I was also wondering if I should see an ENT instead of a neurologist or both?

Given your headaches...I would go with Neurologist first and ENT second. I would try adjusting humidifier settings and/or adding decongestant to see if that helped with sinus issues first.

[robysue]

I want to address this IMPORTANT question all by itself.

Lastly the whole reason I even did the sleep study is my headaches. My doctor was thinking that the CPAP therapy would cure them. I have an appointment scheduled in January to see a Neurologist because they aren't improving at all but are getting worse. If any can give me any suggestions on what I can do about these headaches please help. My doctor has been giving me pretty big dose of hydrocodone due to the level of pain I am having but it doesn't work. It makes me a little loopy for about 30-60 minutes and that's it. He also prescribed 800 mg ibuprofen but it doesn't really work either. I'm taking Topamax to try to prevent the headaches but they last 24 hours a day with no relief. It's not like the morning headaches that most sleep apnea patients have. They start when I stand up from the bed and they continue all day until I go to bed at night. Previous doctors have put me on prescription NSAIDS, tension headache meds, several migraine meds, etc. All this about my headaches may be OT, but I thought I'd ask in case someone went through this and may be able to suggest something. I had found three other headache based forums but I only got one response to my plea for help. Maybe just being on the machine for 7 weeks isn't enough time? I just think that since my headaches last all day and are so painful its hard to function they are more than just side effects of sleep apnea.

I've suffered from chronic headaches most of my life. Probably not as painful as yours, but certainly significant.

To give you just a bit of background on my own headaches: Until last summer I had a headache of some type almost every day. On many days the headache would get worse as the day wore on. I suffer from a variety of different types of headaches and like many other headache suffers, I can describe important differences in the quality of the pain, the quantity of the pain, and the location of the pain. Among the headache types I suffer from are: sinus headaches, migraine headaches, tension headaches, didn't eat enough headaches, slept too little headaches, slept too long headaches, medication side effect headaches, weather change headaches, and rebound headaches.

I bring up rebound headaches in particular because what you've written here seems to point to them: It appears you are taking some serious pain medication every single day for headache pain. And that puts you at a very high risk for rebound headaches. And rebound headaches are nasty to deal with. So my first suggestion about the headaches is to ask the doctor(s) treating you for them about rebound headaches and whether it's possible for some of your current severe headache pain to be explained by rebound headaches.

In case you've never heard of rebound headaches, let me tell you a bit about my own bout with them. My own bout of rebound headaches happened back in 1995 when my husband was involved in a nasty car crash that left him hospitalized for about three months. We had two young children at the time (one of whom in the accident) and I had a 45 mile one-way commute to work each day. Tension and Migraine headaches started immediately (duh) and I started popping the ibuprophen to take the edge off the pain. Only after about 7-10 days, I was waking up with a blindingly bad headache AND the ibuprophen seemed to do almost nothing except reduce the pain from UNBEARABLE to BARELY BEARABLE. When I mentioned the problem to my PCP, he sent me to a neurologist in the same large medical group practice. After taking a detailed medical history and talking at length about the current bout of severe headaches, he diagnosed me with rebound headaches. As I vaguely remember his description of what was going on, it went kind of like this: The rebound headaches were basically being caused by the ibuprophen I was taking: As the pain medication wore off, the headache would get get even worse because I was experiencing some withdrawal symptoms: In other words, my body had gotten so used to the pain medication that as it wore off, I would experience additional headache pain above and beyond the pain that had led me to take the medication in the first place. And the prescribed fix for the problem? He first of all told me to never take any pain medication for headache pain more than 2 times a week and to try to avoid taking pain medication for headaches for more than 48 hours at a time. In the short term, he also gave me a 7 or 10 day prescription for a narcotic based pain killer that could NOT be refilled. The instructions were to take this medication only as needed for severe pain---not at the first sign of a headache. And to not take ANY other pain medication at all during this week period. It was a pretty painful 4 or 5 days, but after about day 5, I did notice that the severe pain had gone away and I never actually finished the prescription. I wasn't headache free, but the pain was manageable and from that point on, I paid close attention to how often I took medication for headache pain.

As for my current status for recurring and chronic headache pain: About the same time that I had my sleep study done, I also asked my PCP for a referral to an ENT for vertigo spells that were very short, but intense and getting worse. After a whole bunch of aural tests came up negative, the ENT decided that the vertigo was probably related to my history of migraines and sent me to a neurologist. And about a year ago, the neurologist diagnosed me with chronic migraines that were primarily manifesting themselves as migraineous vertigo, but also probably -were responsible for much of my day-to-day headaches that I was routinely describing as sinus or tension headaches. The neurologist first put me on topamax as a migraine preventative. Unfortunately I was not able to tolerate it due to side effects. Then came a trial of lamictral, which I also could not tolerate, and that was followed by a trial of depakote, which I also could not tolerate. At that point, the doc's PA suggested a genetic test to check for anomalies in my MTHFR genes, which turned up positive. Among other things, this gene is responsible for metabolizing folate and I was put on a prescription for Deplin, which is nothing more than a megadose of the metabolized version of folate. The PA also suggested that I try taking a megadose of 400 mg of Vitamin B2 (riboflavin) and 400 mg of Magnesium per day (each split into a morning and evening dose) along with the Deplin. Well, the Deplin, the had riboflavin and the magnesium seemed to do the trick since this summer I actually had some nice stretches of headache free days. Unfortunately the daily headaches seem to have come back when I was put on an anti-osteoporosis drug in early December. *sigh*

So I'll also make this suggestion for you to consider: If you've been on the topamax for more than a couple of months and there's been no change in the degree of your migraining, you need to insist that the doc talk to you about how long he wants you to keep taking it when it does not appear to be working. It's true that preventative meds have to build up in your system and that you won't see any results for several weeks, but if you've been at a supposedly therapeutic dose for a month or more and you've not had any reduction in your daily headaches, then the topamax is probably not working very effectively and a change in meds should be considered.

As what CPAP has done for my headaches? I really don't know how to answer that. During my first 4 miserable months on CPAP, when the chronic migraines and vertigo were really causing problems, my headaches got much worse: The sensory overload from the CPAP itself was capable of triggering migraines. But about 5 or 6 months into xPAP (sometime during unsuccessful trial of topamax or lamictal) I did start to notice that I was beginning to wake up headache free on some mornings. Now, I wake up headache free most days, but a low grade headache (calcitonin side effect?) seems to kick in after breakfast on lots of days.

So in conclusion: This is what I recommend you do for the headaches:

• Talk to the neurologist about REBOUND headaches. You are taking enough pain medication on a daily basis for this to be a real potential problem. And it won't get better on its own.
• Double check with both the neurologist and the pharmacist that you are taking the pain medication in the way it is meant to be taken. Specifically ask the question, "How many times per week can I take this medication without it causing rebound headaches?"
• Ask all your doctors and the pharmacist about whether any of the medication you are currently taking can cause serious headaches as a side effect. If the answer is yes, start asking whether there are any alternative drugs that can be prescribed that may be less likely to cause headaches as a side effect.
• Ask the neurologist to switch you to a different migraine preventative if you've been on a therapeutic dose of Topamax for more than a month or two. If Topamax is going to work, it should start making a noticeable difference within about 6-8 weeks of being on a therapeutic dose. If it's not working, you need to try an alternative approach.
• Ask the neurologist about taking Vitamin B2 (riboflavin) and magnesium as a migraine preventative.
• Even if you don't feel much like doing it, try to get some decent quality exercise every day. Try to also block out some quality down time where you don't focus on all your worries---including the headaches. If you meditate, that might help. Doing yoga might help as well. Even a warm, soaky bath may help take the edge off the headache pain.
• Start a headache log: In particular you need to see if there are things that you eat or that you do that make the pain worse. And likewise are there things you eat or activities that you do that tend to help moderate the headache pain.

[robysue]

And now to deal with the OTHER (non-headache) questions.

Now I am proud to say I faithfully sleep with it straight through the night a full 7.5-8 hours. In the mornings I still have trouble waking up. I hit the snooze and its like pulling teeth to get out of bed.
Will this change or is there something I can do to make myself more refreshed so I can be a little more alert? Maybe I am just asking for too much? This is something that I have always struggled with and hate.

If you've always had trouble getting up in the morning, it may just be that you are not a morning person. As you make up your sleep deficit, it may be that you will very, very slowly start to notice that getting up starts to get a bit easier. But you're not likely to wake up one day and say, "WOW I feel wonderful this morning. I think I'll get up and do all those things on my list before noon."

There are a few things that you can try that may encourage you be a bit more alert and refreshed when you first wake up in the morning.

First: As hard as it sounds, try to NOT hit the snooze button at all. It could be that once you hit the snooze button you fall back into a deep enough sleep (momentarily) to make it even harder to get up instead of easier. Or it could be that the dread of getting up invades your thoughts and that last little bit of pseudo-sleep is so disturbed by the negative thoughts of getting up that it colors your mood, and hence how refreshed you feel. So try this as an experiment for a week or so: Move your alarm later by about 15 to 30 minutes and then force yourself to get up when the alarm first goes off. After you're consistently getting up when the alarm goes off, then try moving the alarm back to where you want it to be in very small increments---like 5 minute increments. Leave the new alarm setting in place until you have no trouble getting up when the alarm goes off.

Second: Try to make sure that you are giving yourself enough quality sleep at the beginning of the night. If you are constantly finding you want 30 minutes more sleep in the morning, you might try going to bed 15-30 minutes earlier in the evening. But only do this if you have no trouble getting to sleep in the same time frame you currently get to sleep. Lying in bed for an extra 30 minutes at the beginning of the night NOT sleeping will not make it any easier to get up in the morning.

Third: Light therapy might help. You might want to buy a SAD light and use it for 30 minutes or so in the morning. Replace light bulbs in your house with full spectrum light bulbs. Or even consider getting an alarm clock that uses light to wake you up, either with or instead of sound. Or even, more simply, put a bedroom lamp on a timer so that it comes on 30 minutes before you want to wake up. Waking up to a light room makes it much easier to get out of bed than waking up in a dark room.

As far as my data goes, I check it every week and it looks good as far as I can tell from what I have been taught on here. My average leak rate maximum was 7.2 and 95th percentile 3 and median is 0 for the month of December so far. Some of that leak I believe is from me using my machine to dry out my hose after I wash it. I am not sure if it records that as data but I use the leak test button to check for mask leaks. I probably should not be doing that if it does mess with my data. Does anyone know if it does? I looked at my graphs and the leaks were higher the day I did it but wasn't sure if it was just a bad night or was from that. If it is messing up my data then yes I'm an idiot but I wasn't feeling good like always and it was an easy way of drying it out.

With your overall leak numbers, I wouldn't worry about the very minor affect of using the machine to dry the hose. Lots of folks do it. On a day where you use the machine to dry the hose, you'll know that the maximum leak will be way, way higher than normal. But unless you run the machine for 25-30 minutes or more to dry the hose out, your 95% leak rate will not be affected and your median leak rate will certainly not be affected.

I believe I am having some trouble with my sinuses. I was at a friends house last week and her husband had a bad sinus infection, and we were comparing notes on headaches and where his hurt and it got me thinking. I emailed my doctor and asked him about it because I have pain and severe pressure around the top of my nose between my eyes and my whole forehead. My head hurts other areas but this section has been kicking my butt the last two weeks. My doctor started me on an antibiotic and Flonase to see if it would help.

Migraines can mimic sinus headaches. Or you could have both. Certainly if you've got any congestion the Flonase may help. It certainly helped me during my seasonal allergies this summer. I'm dreading next spring when my seasonal allergies start up again since I'm reluctant to use the Flonase again because I'm now officially a "glaucoma suspect" and steroid use is problematic for folks with full blown glaucoma.

With my humidifier, I still haven't figured out what to setting to put it on. I have noticed that when I set it at 4.5 or higher the next day I cough constantly. What could cause this? I've looked at several posts about the humidifier and sinus infections to try to do some research. Is it possible the CPAP is irritating my sinuses?

Yes, too much humidity can be as irritating as not enough humidity. If 4.5 triggers coughing, try turning the humidifier down to 4 to see if that improves anything. Leave the humidifier at 4 for several days to really see what happens. If it improves stuff, but you still have some problems at 4, turn the humidifier down to 3.5. Again, leave it at the new setting for a few days to see if that improves things. That's really the only way you to fine tune the humidity. And once you have a better idea about how your nose reacts to humidity, you'll get better at predicting how to adjust the humidity on nightly basis as the humidity and temperature in your bedroom changes.

I have been using a saline rinse each night because I have been a little stuffed up for a while now. I think that with breathing the humid air at night and dry air during the day my sinuses are getting screwed up. Could the saline rinse cause a sinus infection? I saw from a few old posts on here people have said rinsing has caused them but are they for real? I don't even use a lot of the rinse just enough to help me breath a little better because I have a FFM so it's not like I'm doomed without my nose. I'm not a fan of things going up my nose but I wanted to try the Nettipot but am afraid I won't like it or be too chicken to use it.

Noses can have trouble going from one environment to another. How does your nose react to nice, hot steamy baths or showers? Also you may want to use a saline nasal spray during the day whenever you are experiencing any nasal discomfort. That will help keep the nasal mucous membranes nice and moist throughout the day.

As for the netipot---you'll never know until you try one. Last spring I finally tried the NeilMed Sinus Rinse bottle on a dare from somebody here and was pleasantly surprised at both how well it worked AND how it was not uncomfortable at all. The NeilMed Sinus Rinse bottle is very much like a netipot, but you don't have to turn your head: You gently squeeze the bottle and the water goes up one nostril and comes out the other. For me, it makes a big difference.

As far as my humidifier goes, I don't know what setting is best now because of the sinus issues and the headaches. I read that sometimes higher settings can cause headaches and then also congestion so I bumped it up to three tonight to see how it would work but I think any higher will cause the constant coughing. I also have a deviated septum but I'm not sure if that has anything to do with my problems or not. I was also wondering if I should see an ENT instead of a neurologist or both?

So how did running the humidifier at 3 work out?

As for whether you need to see an ENT: Do you have any idea just how badly deviated that septum is? Many people have a slightly deviated septum that doesn't really cause any real problems. I think one way to try to determine whether that deviated septum is a real problem is to answer this question: During the day time do you have any serious problems breathing through your nose? If you sometimes can breath through your nose and you sometimes can't, then the question becomes: What triggers your problems when you have them? Head colds and other illnesses that trigger major congestion? Allergies that can (or cannot) be avoided or treated?

[Drowsy Dancer]

Randomly: I <3 robysue.

[anglett]

Always been this way huh? Then it may not be OSA related and the cpap machine can't fix things that aren't related to OSA.

I'm probably just not a morning person. I tend to actually wake up better on the weekends. I know I should try to keep the same schedule everyday but I just can't see myself getting up at 6:00 am when I don't need too and I only work four days out of the week leaving me three days to at least sleep to 7 or 8. I know I need to try to keep on schedule but I really hate getting up that early.

Again it is possible that these headaches are not related to OSA. Typical OSA headache from low Oxygen levels will be present immediately when you wake up. Ask your DME for an overnight pulse oximetery to evaluate any possible Oxygen level drops during the night that might explain the headaches.

I will try that. I thought of buying one to have just in case because my Oxygen levels before CPAP were around 74% to 80% at night. I did a few overnight tests before I went in for my sleep study because I didn't want to do the sleep study and my doctor wanted to prove me wrong. I am thinking the headaches may be other things though. It is never simple with me.

You might consider adding a decongestant of some sort at night to see if that helps.

I have been taking a nasal decongestant for 4 days now. My doctor said it would be ok to for a few days to see if it would relieve the pressure along with the Flonase he prescribed. I have to be careful though because of my BP. I have to monitor it and make sure I'm not causing any problems but it's not stroke level anymore.
I am wondering if I have allergies or something that is irritating me at work causing the headaches or sinus pressure. At my workplace the ceilings are high but I sit right under an air vent that blows air on me constantly all day. It's pretty cool in there, but it seems like the air is pretty dry.
Anyways, thanks so much for responding Pugsy. I really appreciate it. I'm not sure if I made a lot of sense. I'm not doing too hot right now but I'm trying to get a list of questions and ideas together before I go to the neurologist and my appointment is on January 13th.

[anglett]

Thank you so much for replying robysue.

[*]Talk to the neurologist about REBOUND headaches. You are taking enough pain medication on a daily basis for this to be a real potential problem. And it won't get better on its own.
[*]Double check with both the neurologist and the pharmacist that you are taking the pain medication in the way it is meant to be taken. Specifically ask the question, "How many times per week can I take this medication without it causing rebound headaches?"

I have wondered if I do have rebound headaches and I went for four days without taking any pain medicine but this was before I started taking anything stronger than OTC medicine. I will talk to the neurologist about it and see what he suggest to do. Although, I would not look forward to not having anything to take for the pain. I know that the hydrocodone doesn't work too good, but I still take it although I have notice I have been trying not to take as much of it. I still take it on a daily basis though at least every morning and afternoon to get me through work because that is the worst times of the day. Usually when I am able to get home I can lay on the couch with an ice pack on my head with the lights out.
I am going to talk to my pharmacist and get his opinion also since I will be seeing him soon this week. Maybe he can suggest a different alternative to what I am taking now. I have basically quit taking all OTC pain relievers because I can't tell where they help at all. I was going though this same pain last year for eight months straight and I was taking every OTC pain killer I could think of and then my doctor put me on BP medicine and the headaches went away. I know I certainly was taking more than recommended and probably experiencing rebound headaches from all the pills I was taking. The headaches started back in May this year but my BP isn't as high and my doctor says it's not causing them.

[*]Ask all your doctors and the pharmacist about whether any of the medication you are currently taking can cause serious headaches as a side effect. If the answer is yes, start asking whether there are any alternative drugs that can be prescribed that may be less likely to cause headaches as a side effect

That's a good point. I actually did get my doctor to change my BP medicine because one of the side effects was headaches. I had went to another doctor and she changed my BP medicine right before the headaches started so I asked my family doctor to put me on something else to see if that was the problem. I haven't tried it with anything else but I only take one other thing besides the Topamax. Most BP medicine usually has a side effect of headaches and I'm wondering if what helps me can also hurt me.

So I'll also make this suggestion for you to consider: If you've been on the topamax for more than a couple of months and there's been no change in the degree of your migraining, you need to insist that the doc talk to you about how long he wants you to keep taking it when it does not appear to be working. It's true that preventative meds have to build up in your system and that you won't see any results for several weeks, but if you've been at a supposedly therapeutic dose for a month or more and you've not had any reduction in your daily headaches, then the topamax is probably not working very effectively and a change in meds should be considered.

I have been taking Topomax for seven months now and the last two months have been at 50 mg so I'm still not taking the highest dose available but I am experiencing some side effects. I was just hoping it would work but I was thinking of talking to my doctor about stopping it and maybe trying something else. I am having a lot of trouble with my memory and I have always been very forgetful but it's to the point now that people are getting very aggravated with me because I can't remember something they told me yesterday.

[*]Ask the neurologist about taking Vitamin B2 (riboflavin) and magnesium as a migraine preventative.

Ok I will do anything. If it didn't hurt I would stand on my head for you.

[*]Even if you don't feel much like doing it, try to get some decent quality exercise every day. Try to also block out some quality down time where you don't focus on all your worries---including the headaches. If you meditate, that might help. Doing yoga might help as well. Even a warm, soaky bath may help take the edge off the headache pain.

I walk every day for 15 minutes at work during my lunch break and then on the weekend I do more. I do more at work depending on how I feel because we have a full gym. I usually spend my free time in our "quiet room" because it's the only place in our office that does not have any bright lights. It's set up for relaxation so there's a very dim lamp in there with soft plushy couches so I go in there and lay down and close my eyes when it gets too bad. Before the headaches I would spend at least an hour in the gym a day at work and then 30 minutes when I got home walking around the neighborhood. Then on the weekends I would play tennis on Saturdays. I always tried to stay active and not sit around. I thought about trying out yoga because I think it might relieve some tension and help with the headaches. I actually have been putting it off for two weeks because the headaches took a turn for the worse so my motivation flew out the door.

[*]Start a headache log: In particular you need to see if there are things that you eat or that you do that make the pain worse. And likewise are there things you eat or activities that you do that tend to help moderate the headache pain.

I am taking the whole list to the neurologist when I go. Robysue is the best!

[anglett]

Light therapy might help. You might want to buy a SAD light and use it for 30 minutes or so in the morning. Replace light bulbs in your house with full spectrum light bulbs. Or even consider getting an alarm clock that uses light to wake you up, either with or instead of sound. Or even, more simply, put a bedroom lamp on a timer so that it comes on 30 minutes before you want to wake up. Waking up to a light room makes it much easier to get out of bed than waking up in a dark room.

That's interesting. I never thought about light therapy so I will have to try that and the other tricks. I have tried setting the clock earlier on the alarm clock to trick myself in the morning and then sitting it farther away from me. Then I started to use my cell phone as an alarm in addition to my bedside one because I am that hard to wake up that I need two. I am not married so my boyfriend does not spend the night so I don't have anyone to wake me up.

Noses can have trouble going from one environment to another. How does your nose react to nice, hot steamy baths or showers? Also you may want to use a saline nasal spray during the day whenever you are experiencing any nasal discomfort. That will help keep the nasal mucous membranes nice and moist throughout the day.

In the mornings to breath better I need to take a hot shower and then my nose will open up some. This was even before CPAP but I have noticed that when I take the CPAP off my nose will start to get stopped up while I am getting my things ready for a shower or if am off that day and don't immediately jump in the shower I get really stopped up. The shower helps clear me up. I actually carry around a thing of saline nasal spray in my purse and squirt it in when I need it when my nose feels too dry. It just seems lately it's been getting that way more and more so I was wondering if using the CPAP/humidifer had something to do with that. My nose has tended to always be either a little dry or stopped up so I doubt it's the CPAP's fault but just thinking maybe I am getting used to the extra moisture at night and then not getting it during the day causing the discomfort. Maybe I am just thinking too much.

So how did running the humidifier at 3 work out?

3 wasn't so bad. No coughing at least. Going to keep it on 3 this week and then maybe bump it down and see if I notice a difference. I had started off at first on 2 then 1 and couldn't tell a difference between the two. Really the only difference in the settings is the higher ones cause the constant coughing ALL day long the next day. I ate a whole bag of cough drops at work.

As for whether you need to see an ENT: Do you have any idea just how badly deviated that septum is? Many people have a slightly deviated septum that doesn't really cause any real problems. I think one way to try to determine whether that deviated septum is a real problem is to answer this question: During the day time do you have any serious problems breathing through your nose? If you sometimes can breath through your nose and you sometimes can't, then the question becomes: What triggers your problems when you have them? Head colds and other illnesses that trigger major congestion? Allergies that can (or cannot) be avoided or treated?

My family doctor said I had a very distinct deviated septum but not bad enough to cause the headaches. I had another doctor tell me that also. I am going see if the neurologist will take a look at a CT scan that was taken in July and see what he says about it. I notice that sometimes I tend to breath out of my mouth a lot without realizing it and it's not always because I'm stopped up but that is a lot of the reason why. Maybe because I'm so used to being stuffy and dealing with problems with my nose that it's just habit.

[robysue]

Thank you so much for replying robysue.

You are most welcome!

As you can tell, I've been there and done that with regard to chronic headaches. And giving some ideas is my way of paying it forward for the help I've received from others.

I have been taking Topomax for seven months now and the last two months have been at 50 mg so I'm still not taking the highest dose available but I am experiencing some side effects. I was just hoping it would work but I was thinking of talking to my doctor about stopping it and maybe trying something else. I am having a lot of trouble with my memory and I have always been very forgetful but it's to the point now that people are getting very aggravated with me because I can't remember something they told me yesterday.

Seven months is a long time to be on Topamax without getting up to the final dose the doc wants you to be on. What kind of side effects are you having? And what dose was the doc hoping to get you up to as a "therapeutic" dose? All in all, I think you really should insist hat you be weaned off the Topamax and ask what other prophylactic migraine meds might be tried. There are a whole bunch of them and finding an effective one is largely a matter of trial and error. But do ask about the Vitamin B2 and Magnesium combination too---it was suggested to me by the PA in my neurologist's office as something they had found seemed to work for many of their migraine patients.

You might also want to ask about other migraine meds that can be used to treat the headache pain and symptoms such as sensitivity to light and noise as soon as you feel the first symptoms coming on. I've got a prescription for a drug called Maxalt (generic name is Rizatriptan). The good thing about Maxalt is that if I take it as soon as I start experiencing migraine-type pain or other migraine symptoms, it will usually knock the headache out (completely or almost completely) in as little as 10-30 minutes. The bad thing about Maxalt is that it really should not be taken more than once or twice a week at most. So the "chronic" part of the migraines has to be dealt with before Maxalt can be used to wipe out the remaining episodic migraines.

Best of luck in getting some effective treatment of these headaches. They sound particularly nasty and with the sensitivity to light and the fact that they last all day, I do think they sound much more like migraines than the typical OSA headache. In my case, I think the OSA headaches were simply masked by other chronic headaches back before I started CPAP. And so when that one small part of my headache problem was brought under control by PAP therapy it was simply not enough to make a difference in how I felt given the other chronic headaches I still had at the time.

[robysue]

That's interesting. I never thought about light therapy so I will have to try that and the other tricks.

If you try any of the light therapy tricks, let me know how well they work for you. Until about a year or two before my diagnosis, the light on a timer was usually all I needed to make it possible for me wake up feeling pretty decent in the morning. I tried it out because our bedroom at the time was on the northwest corner of the house and I had to get up by around 6:30 in order to get kids off to school and I absolutely hated getting up in a dark, dark bedroom from November through March. I heard a story on NPR one day about SAD and how light-alarm clocks could help, and that's when I suggested to hubby that we put a light on a timer so that it would come on about 30 minutes before wake up time. It was remarkably affective until the OSA really started to affect me about a year or two before I was diagnosed.

In the mornings to breath better I need to take a hot shower and then my nose will open up some. This was even before CPAP but I have noticed that when I take the CPAP off my nose will start to get stopped up while I am getting my things ready for a shower or if am off that day and don't immediately jump in the shower I get really stopped up. The shower helps clear me up.

Even at a humidifier setting of 2 or 3, you are breathing humidified air all night. And since your nose doesn't seem to like dry air, it could be that you're getting stopped up after taking the mask off because your nose is noticing the dry air. In my allergy seasons a similar thing would happen to me: With the pollen filter on the BiPAP, I'd breathe pollen-free air all night and wake up with a pretty clear nose. But within about 5 to 10 minutes of taking the mask off, I would notice the return of my usual seasonal allergy symptoms, including the nagging congestion.

I actually carry around a thing of saline nasal spray in my purse and squirt it in when I need it when my nose feels too dry. It just seems lately it's been getting that way more and more so I was wondering if using the CPAP/humidifer had something to do with that. My nose has tended to always be either a little dry or stopped up so I doubt it's the CPAP's fault but just thinking maybe I am getting used to the extra moisture at night and then not getting it during the day causing the discomfort. Maybe I am just thinking too much.

I think you are right: The problem is not the CPAP itself---rather the problem is that the CPAP is pampering your nose with warmer, more humid air at night and so the nose is even less comfortable in the day than usual. I will say that if saline nasal spray helps during the day, your nose is very likely to really like a neti pot. You might need it more in the morning rather than the evening though. In addition to helping clear out some of the congestion, a neti pot will give your nose plenty of warm moisture to make it feel better.

So how did running the humidifier at 3 work out?

3 wasn't so bad. No coughing at least. Going to keep it on 3 this week and then maybe bump it down and see if I notice a difference. I had started off at first on 2 then 1 and couldn't tell a difference between the two. Really the only difference in the settings is the higher ones cause the constant coughing ALL day long the next day. I ate a whole bag of cough drops at work.

As for whether you need to see an ENT: Do you have any idea just how badly deviated that septum is? Many people have a slightly deviated septum that doesn't really cause any real problems. I think one way to try to determine whether that deviated septum is a real problem is to answer this question: During the day time do you have any serious problems breathing through your nose? If you sometimes can breath through your nose and you sometimes can't, then the question becomes: What triggers your problems when you have them? Head colds and other illnesses that trigger major congestion? Allergies that can (or cannot) be avoided or treated?

My family doctor said I had a very distinct deviated septum but not bad enough to cause the headaches. I had another doctor tell me that also. I am going see if the neurologist will take a look at a CT scan that was taken in July and see what he says about it. I notice that sometimes I tend to breath out of my mouth a lot without realizing it and it's not always because I'm stopped up but that is a lot of the reason why. Maybe because I'm so used to being stuffy and dealing with problems with my nose that it's just habit.[/quote]