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Sjogrens Topics => Living With Sjogren's => Topic started by: wordnerd on April 25, 2008, 05:31:06 AM

Title: New Breathing/Sleeping/Medication Problem
Post by: wordnerd on April 25, 2008, 05:31:06 AM
I spent the last 10 minutes trying to figure out where to stick this post... breathing or sleep problems or medication... and finally gave up and stuck it here.

First of all, my asthma woke me up at 4am and it is now 5am and I'm writing this post.  So annoying.

I went to see the sleep apnea specialist yesterday.  He had a last minute cancelation.  He was awesome!  He took tons of time to go over everything and explain everything and discuss treatment options.

Basically, my sleep study showed that I don't have very frequent episodes of sleep apnea, but when I do my oxygenation drops down to around 71% which he said is very very low.  He said that if I held my breath for 45 seconds it would still probably only drop into the 80s, so he was concerned about that.

He also said that I have a lot of alpha wave intrusions (periods of wakeful brain activity) intruding on my periods of deep sleep.  He said this was commonly associated with autoimmune diseases and fibromyalgia (both of which I have).

So I'm going to get started on CPAP, and I'm having my titration study done next Friday.  I hoping that the low oxygen levels and the alpha wave intrusions are what's causing my constant headaches and making me sleep 18 hours a day, and the CPAP will resolve this.  But I forgot to ask how/if the CPAP will help with the alpha waves.

I'm a little angry though because I'd been asking my GP for months and months if I should have a sleep study done since I'd been waking up feeling out of breath and tired all the time, which he kept brushing off as completely unnecessary.  He finally agreed when I started having seizures as I was falling asleep.  It's just so frustrating!  And I really feel that a lot of it has to do with my age.  I think that if a 48 year old came in complaining of my symptoms and asked about a sleep study he would have agreed right away.  But I'm 24.  How many unusual diagnoses for someone my age (ie AI Pancreatitis and AI Hepatitis and a dozen others) do I have to wrack up before my doctors stop dismissing things that are very rare in people my age?  I mean it seems pretty obvious that I'm not your average 24 year old.

I've also been getting very out of breath from even the simplest activity.  I'll put on my socks and then have to lay down for a few minutes until my heart stops racing and I stop panting.

The sleep apnea specialist was concerned that it might caused by the Methotrexate.  He said that Methotrexate (and also rarely Plaquenil) can cause lung problems.  Has anyone else heard of this?

He said he'd discuss it with my uncle (who is also my Pulmonary Specialist), so that I could get tested to see if the Methotrexate is causing it.  Or if not, what is.

He also took a look in my nose and noticed it was bright red and looked infected.  He proscribed Bactroban, but when I got it from the pharmacy I noticed (after using it once) that it said that this kind is not for nasal use and that there's a special Nasal Bactroban for that.  So now I have to sort out, if a mistake was made and if it was the pharmacy or if the Rx was written wrong.  I hope it wasn't detrimental to use the topical only version up my nose one time.

Finally, my right ear is bugging me again.  It hurts and feels like there's a lot of pressure in there, and I get a sharp pain in it when I blow my nose.  So I'm hoping my ear isn't infected too, especially since he mentioned that my nasal infection could be MRSA and I might want to get it cultured.

Anyway.... that's all for now.  I think its enough  ::) ;D

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: Scottietottie on April 25, 2008, 09:59:05 AM
Hi Lauren  :)

I'm glad the specialist you saw yesterday was 'awesome'. It makes such a difference doesn't it? Good old 'bedside manner' paired with expertise is precious!

I'm not surprised you feel let down by your GP. If you were 48, however, unless you were male, your GP would have told you it was 'your time of life'. 'Fatigue is to be expected' 'it will pass - and do you want some HRT?'  Now if you were male - they might opt for a sleep study!  ;)

Sorry - I don't know anything about meds and lungs. I haven't heard of Plaq causing that but that doesn't mean it couldn't.
 You're going to have to see about your ear. ear infections are horrible, as you know. if you could 'catch one' before it gets going, it would have to be a good thing.
Good luck with the CPAP.    Take care - Scottie  :)

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: Patze on April 25, 2008, 07:49:37 PM
Hi Lauren,

Oh Scottie is so right, the neuro and the ENT who are supposed to be the doctors that most often order the sleep studies pretty much ignored me and my symptoms for years.  I guess they figured eh, menopause, she'll just have to deal.  The rheumy finally took matters into his hands and guess what?  I have sleep apnea, sleep disturbances, and rem obstruction with significant oxygen drops also.  I'll have a CPAP machine within a couple of weeks now; if I would have waited for the ENT, neuro, or even the endo, I would still be waiting - maybe for several more years.

Now when I told the ENT, the response from the assistant was to disbelieve me and look over the results and see that it actually was the rheumy that ordered the tests, not the ENT.  The ENT just acted like he didn't care, and they wonder why I won't have this guy operate on me?  Nope, not this kid!  The neuro was about as interested as the ENT, so I no longer see him.

It's so sad that I'm not the "middle aged man" so I can get better medical care by some doctors; buts it too bad for them as they lose a good patient.

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: irish on April 25, 2008, 09:24:00 PM
Lauren, So, this was an interesting day, Right!!!!! Glad to hear that you have a good sleep specialist who is able to shed some light on some of your issues. Being that low on oxygen off and on during the night could certainly make you tired and may even be causing the seizures. Well be very interesting to find out.

Methotrexate can indeed cause lung issues. That is one of the things that they watch a person for. You will need to get this checked out---also, could be from the asthma or the sjogrens. Then, another thing that might need to be checked is your hemoglobin. I got so short of breath like you when dressing, bathing etc. They put me on a monitor for 2 weeks and here it was low iron. I have the low ferritin level. This is very common in people with autoimmune diseases.

Hopefully you can get all these things sorted out. I don't think that using the bactroban(not for nasal use) one time will hurt you any. Heavens only knows what does or doesn't hurt a person. If you call the pharmacy you can find out if they sent you the wrong tube etc. I have used that several times when I had MRSA. If they want to culture you they sure can't do it when you are using the bactroban. That stuff really kills off the bacteria. When I used it I was also on antibiotic and had to use the bactroban for 2 weeks only. Generally they order it for only a certain number of days otherwise it kills off all the bacteria including the good ones.

Hope things improve for you. Shame of your GP for not listening to you about your sleeping etc. Hope the other doc sends a report to your GP so you can ask him if he got it and saw the results. Doctors should never assume anything with sjoggies or anyone with autoimmune disease. Irish ;D
Title: Re: New Breathing/Sleeping/Medication Problem
Post by: genko_b on April 25, 2008, 09:25:55 PM
Hi Lauren:

What a mess of things going on for you. I think the CPAP is a good idea with your oxygen going so low. My husband is trying the mouthpiece thing first, but his apnea is not causing such a drop in oxygen. I think the lowest he went was 85, which isn't too bad for a short dip. That's interesting about the alpha waves - it might explain why so many of us are so tired all the time.

One of the things that happens when you meditate regularly is it increases the beta waves and decreases the alpha waves for that period of time - I wish it were permanent -  which may explain why during intensive meditation retreats we don't feel so tired even when we are very sleep-deprived.

I'm guessing the ear infection and nose infection are going on because the methotrexate is lowering your resistance. But what a drag, especially having to check up on your doc or the pharmacist with the meds. That seems to be happening more and more.

Take care. I am always thinking of you and hoping one or more of these things will resolve for you and make your life a little easier.

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: wordnerd on April 27, 2008, 09:47:04 PM
Thanks everyone for your replies!  I've been sleeping all day and night practically, so i haven't been on much.  I can't seem to sleep enough hours to feel like I don't need to go right back to sleep.  I'm hoping the CPAP will put an end to it.  It's miserable.  I'm so excited for my sleep study it's ridiculous.

I'm going to get my lungs checked out sometime next week.  So I'll see what that shows.

I don't think I'm anemic because I get blood tests regularly and they've been normal but I'll double check.

The Bactroban turned out to be the right thing.  It apparently only says not to use it in your nose so that you'll spend 10x more on the special nose kind that's basically the same.

Man I can't stop yawning!!

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: Shari on April 28, 2008, 06:11:53 PM
I have had ear pain that actually turned out to be imflamation instead of an infection...fluid built causing pressure hence the pain.  It happened in a flare.

Chin up!!

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: wordnerd on April 29, 2008, 10:35:22 PM

I wouldn't be suprised if it's just flare related inflamation.  I was at my pain specialist on Friday and asked if she'd take a peek in there for me just in case it was obviously infected.  She laughed and said she is hardly an ear expert and hadn't looked in ears since she was a resident, but she was happy to oblige.  They were both slightly red.  Nothing earth shattering.

Its not hurting as much the last few days.  I don't know if it was the Bactroban or what but I don't really care as long as it feels better. hehe

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: Shari on May 04, 2008, 08:36:46 PM
Ears to you!!  I'm glad your ears are feeling better!

A friend of mine today said, "When I was 17 the Doc said I had 25% hearing loss."  I asked him, "In your left ear or your right ear?"  He said, "I'm not sure, maybe it was 25% loss between my ears."   Well now, I could not let that one go!!!!!

Night night!!   Shari
Title: Re: New Breathing/Sleeping/Medication Problem
Post by: Patze on May 05, 2008, 04:04:04 AM
Hi Shari,

Now that's a good one!  ;D

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: Gerri on May 05, 2008, 04:21:10 AM
Hi Lauren,

I've had sleep apnea most of my life.  I started noticing it when I was 23 when I had my first child (He is now 31).  The women in the bed beside me told me to stop snoring.  All went well after that until I had my first sleep test nearly 20 years later.  I was told I had sleep apnea, but didn't need a machine yet.  Then nearly 10 years later my sleep apnea had become severe obstructed sleep apnea, and I wasn't overweight.  I was stop breathing 41/hour. 

I now have many medical issues, lung problems, heart problems, stomach problems, lesions on the brain, and a number of neurological problems (central apnea, obstructed sleep apnea, lesions, auditory processing disorder, hyperacusis) arthritis(s) and the list goes on.  Did sleep apnea cause all this I don't know, but it didn't help.   

As for your ear problem, there is a autoimmune disease of the ear, which you might want to have them check you out for.  After I am finished with being checked out for Celiac Disease then I am going to have them check me out for this autoimmune disease also.  Many with one autoimmune diseases usually end up with more than one.




Title: Re: New Breathing/Sleeping/Medication Problem
Post by: wordnerd on May 05, 2008, 03:34:55 PM
Thanks everyone!  I had my CPAP study.  It was awful!  I barely got any sleep and couldn't get comfortable.  The tech finally switched me to a nose only mask which was way more tolerable.  I woke up feeling like I swallowed tons of air though.  I'm awaiting the results.

I hope that CPAP gets easier when you get used to it.

I having my lungs tested on Thursday I think.

I'm so tired I feel like a blob.

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: Patze on May 06, 2008, 03:12:28 AM
Hi Lauren, it was great chatting with you last night!

Yep, get my machine this week and I so can't wait (anything to get rid of these morning headaches)!!!!  Wasn't that test awful?  It wasn't as bad as as the 1st one, but I had the nose mask to begin with so I guess I was spared a bit.  Anyway, fighting with that and the wires about drove me crazy!

I also have to get a lung study done as the pulmonalogist (gosh, another ologist, ugh!) thinks that I might have asthma; oh boy, just what I don't need.  My testing is in a couple of weeks or so.  Hang in there and let me know how it goes!

Anyways, ugh, is it morning yet?

Take care -

Title: Re: New Breathing/Sleeping/Medication Problem
Post by: wordnerd on May 07, 2008, 11:08:19 PM

I enjoyed our chat too!   :)  I hope you're machine helps you feel better!  Yes... it was miserable.  I'm surprised I slept at all.  I'm supposed to hear the results tomorrow.  I also am heading out to my Pulmonologist/uncle at the crack of dawn to have a special lung test to see why I've been so out of breath lately... aside from the asthma that I already know I have.

Take care!