so very tired and it isn't getting better

[robertmarilyn]

Hey mar, that's great news -- and it sounds like you and your sleep doctor are making a great team!
O.

I really like her a lot. Every appointment has been a long one...she puts me at the end of the day and then spends as much time with my husband and me, answering all the questions we think up and showing us info on both her computer sleep program and on paper. She also has me call her with updates and will return calls very quickly. The one thing I have had to get used to is that she seems to go out of town about 2 weeks of each month since I've been going to her. So sometimes she isn't there for a week or so when she has told me to call her. Could just be a summer thing and like I said, I really do like her. It was very much worth it to not stick with the original sleep doctor.

mar

[robertmarilyn]

...trouble with contact dermatitis and it is showing up where my mask touches my face...

DermaE makes a cream named Alphalipoderm (some health food stores and Whole Foods carry it, or order online from DermaE). It contains alpha lipoic acid and green tea extract, both of which are potent anti-inflammatories. I have easily irritated skin. I use their Vitamin E gel (no oil) after washing my face with their papaya & soy facial soap, all about about 15 mins before maskup (it has not degraded the silicon in my pillows during the almost 2 yrs of CPAP). I use the cream after washing face in the morning under moisturizer and makeup. I used it several times a day when I had rosacea for 2 yrs that mysteriously disappeared; my Derm was impressive with how it calmed that condition. It might help your skin heal from the inflammation and become less reactive over time. I usually buy it (2 oz) for about $17. Good luck finding a resolution!

Thanks for the tip...I will order some. My ankles turn to the outside very easily so for riding 50 and 100 milers, I always wear prescription orthopedic ankle braces that were prescribed by my orthopedic surgeon (he put my shoulder ball back together with titanium when I had an accident about 10 years ago). Wearing my riding boots, socks and ankle braces for over 12 or more hours when I do rides, causes a really bad heat blistery rash on my ankles. For that I have been using Corona ointment for horses...since my horses and I all use it I get it in a big tub (I use it a lot more than my horses). I smear it all over my feet, toes, and ankles before I put on my socks, ankle braces, and boots. It really helps my feet and ankles to feel better and not get so abraded.

And then, after I get my boots all laced up (I ride in high top hiking boots so they can support my ankles) I use one roll of vet wrap to do an athletic sports wrap on both boots. Over that I do the same wrap with duct tape. Kind of makes a homemade cast for each ankle, so they can't roll to the outside in my stirrups. My doctor said that my problem can be treated with surgery (he was a shoulder doctor so he wouldn't have gotten the business) but I have held off...I can still run on my treadmill because the surface is even (my ankles turn on rough surfaces so I don't run outside and I always wear my high top hiking boots when I ride or hike.)

BTW, I have wondered if there is a relationship between my extremely loose liniments and tendons in my ankles and in my extremely flabby loose upper palate and throat area (esp before the UPPP).

Anyway, Corona for horses would NOT be a good thing to use on my face or my mask so I'll try what you suggested. Thanks,

mar

[always_tired]

I have just started reading this thread and I understand your frustration as I have been on CPAP and compliant for ~2 yrs with no improvement. I wouldn't be functional if my psychiatrist hadn't gotten frustrated at my previous sleep doctor and prescribed Provigil on his own. It's made a world of difference.

I also switched doctors and am now on a BiPAP (for a whole week, so I can't comment on its help yet). The new sleep doctor has a neurology background, instead of pulmonology, and recognized that my history of neuromuscular disease could be a factor even though it has been in remission for a good 10 years. My neurologist treating the disease (a well known and respected expert in the disease) had said he didn't think it was a factor. We'll see who is right. Unfortunately, the new doctor doesn't want me taking Provigil every day while we evaluate the BiPAP.

Anyway, I had no trouble getting complete details of my overnight and MSLT from my old doctor. There were graphs and handwritten notes by the technician, one of which mentioned several episodes of what looked like atrial fib, plus the 3 page dictated summary. I would never have known about the possible atrial fib without those notes. So these things exist, you just have to get them out of the doctors. And now I'll see if the new doctor will give me detailed results. As more medical records become electronic, paper copies of your results might not be sitting around in the doctor's office. Someone has to look at your records and decide what to print, which takes time and costs money. But don't give up on trying to get them.

Hope you are improving.

Pam

[Muffy]

About my periodic limb movements of 10 per hour: Although this is significant and can be treated with meds, at this point the doctor thinks that they aren't a major cause of my arousals and the meds to treat PLMs can interfere with REM sleep. Both of us agree that we'd rather not treat the PLMs since they seem to be way down on the list of whatever is causing my sleep problems.

The Pristiq will probably increase REM latency and decrease REM duration, and clonazepam is also a REM suppressant. Interestingly, clonazepam is used to treat PLMs (less so today with the new drugs on the market).

But if you're doing well, it's hard to argue with success.

Sounds like the triplets are all on the Road to Recovery (another Bob Hope and Bing Crosby film)(Bob Hope and Bing Crosby were 2 entertainers who made a series of movies that... oh, NM).

The only remaining issue is...

...what am I going to do with this 50,000 rounds of ammunition?

Muffy

[cflame1]

Muffy... there's always another doctor to take it out on

Besides, what would we do without having you hang around? You're always good for a slightly understandable answer (at least it's more understandable than some doc's).

[robertmarilyn]

About my periodic limb movements of 10 per hour: Although this is significant and can be treated with meds, at this point the doctor thinks that they aren't a major cause of my arousals and the meds to treat PLMs can interfere with REM sleep. Both of us agree that we'd rather not treat the PLMs since they seem to be way down on the list of whatever is causing my sleep problems.

The Pristiq will probably increase REM latency and decrease REM duration, and clonazepam is also a REM suppressant.

Yeah, so I'll have to see if it is worth using in the long run. I've just started taking it and the jury is still out on whether I will keep on taking it.

Interestingly, clonazepam is used to treat PLMs (less so today with the new drugs on the market).

My doctor told me this is a very old medicine that was used in the past for seizures but now there are much better seizure meds. She did say it was still used for problems where (usually older men) will still be asleep when they get up and beat up their wives...forgot what she called it (wife abuse?...no...that wasn't it...can't remember). For the last three nights I have taken .5mg instead of .25mg of clonazepam and I feel like I am having noticeably better sleep. I have fallen asleep quickly and just noticed waking up a few times during the night (which is a big improvement for me) and after about seven hours in bed, I am ready to get up.

This higher dose has been when I have been taking the Pristiq so the clonazepam seems to still be helping me improve despite the Pristiq. I take the Pristiq as soon as I get up so that taking it will be as far away as possible from my bedtime.

But if you're doing well, it's hard to argue with success.

I realize I have made several med changes that could be helping me feel better. I also know that without another sleep test with me on the drugs I am taking, we can't tell what is really going on with my REM. But I DO feel better and have done so for more than a week. I'll get more input when I see the neurologist.

Sounds like the triplets are all on the Road to Recovery (another Bob Hope and Bing Crosby film)(Bob Hope and Bing Crosby were 2 entertainers who made a series of movies that... oh, NM).

Oh no, don't tell me we are going to start singing and dancing!!!!!!!!!

The only remaining issue is...
...what am I going to do with this 50,000 rounds of ammunition?

Wait Muffy, I just bought a 2008 Ford 250 Super Duty Supercab XLT 4WD 6.4L V8 Turbo Diesel Engine truck for our road trip (for when we need to go through "no fly" zones). Although I do like this sleep doctor I have now so we will just want be friendly when we visit her. BTW, who watches your four toddlers when you go on these trips? And another use for the ammo is to clean out crudded up humifiers...couldn't you use vinegar and the ammo in your humidifier part and shake it up and get rid of calcium deposits? Or was that supposed to be beads or beans or something else?
mar

Muffy

[Muffy]

She did say (clonazepam) was still used for problems where (usually older men) will still be asleep when they get up and beat up their wives...forgot what she called it (wife abuse?...no...that wasn't it...can't remember).

REM Behavior Disorder, but I wouldn't use clonazepam for that, I'd use the Dillon.

Muffy

[robertmarilyn]

She did say (clonazepam) was still used for problems where (usually older men) will still be asleep when they get up and beat up their wives...forgot what she called it (wife abuse?...no...that wasn't it...can't remember).

REM Behavior Disorder, but I wouldn't use clonazepam for that, I'd use the Dillon.
Muffy

Well then there you have it, you have a use for your 50,000 rounds of ammunition.
mar

[robertmarilyn]

I have just started reading this thread and I understand your frustration as I have been on CPAP and compliant for ~2 yrs with no improvement. I wouldn't be functional if my psychiatrist hadn't gotten frustrated at my previous sleep doctor and prescribed Provigil on his own. It's made a world of difference.

Aw, sorry for the two years of no improvement. With improvement when using CPAP, it can be a lot easier to handle CPAP life, because there is a real benefit to your life...when you don't feel better using it (or even feel worse) or have other problems related to using CPAP, it is a lot harder to hang in there with the many tweekings and fiddlings and experiments that can help us to find the best masks, settings, and other helpful things we need to figure out to get things going correctly.

I also switched doctors and am now on a BiPAP (for a whole week, so I can't comment on its help yet). The new sleep doctor has a neurology background, instead of pulmonology, and recognized that my history of neuromuscular disease could be a factor even though it has been in remission for a good 10 years. My neurologist treating the disease (a well known and respected expert in the disease) had said he didn't think it was a factor. We'll see who is right. Unfortunately, the new doctor doesn't want me taking Provigil every day while we evaluate the BiPAP.

For my latest sleep test and MLST, I had to get off of some of my meds for about 5 weeks (and from what Muffy has told me it would have been good to have been off of a few others too, for the test). The meds I have been taking for my allergies really help me a lot but I realize that the neurologist may want me off some or all of them if he does tests. Maybe you won't take too long to figure out the setting you need for the bipap and either you will feel better and won't need Provigil or else you will be able to get back on it soon.

Anyway, I had no trouble getting complete details of my overnight and MSLT from my old doctor. There were graphs and handwritten notes by the technician, one of which mentioned several episodes of what looked like atrial fib, plus the 3 page dictated summary. I would never have known about the possible atrial fib without those notes. So these things exist, you just have to get them out of the doctors. And now I'll see if the new doctor will give me detailed results. As more medical records become electronic, paper copies of your results might not be sitting around in the doctor's office. Someone has to look at your records and decide what to print, which takes time and costs money. But don't give up on trying to get them.

If I can't get my data from the old sleep doctor, I am going to see if the neurologist will help me get the data. The information would be relevant to figuring out what is going on with me. In fact, I may enlist my help from my insurance company (Federal Blue Cross Blue Shield of TX). Although I don't think I have ever managed to talk to a real person there but maybe I needed to stay on the recorded line a few more days and a real person may have eventually answered

Hope you are improving.
Pam

I think things are going in a very good direction. My IM doctor and my sleep doctor are seeing an improvement and my husband definitely can tell I am feeling better. And today I had my teeth cleaned and my dentist, who sees me at least twice a year and has become a friend of ours, was really impressed with how good I looked. She has been interested in my health problems since we moved to El Paso almost 4 years ago and has followed what has been happening through my husband who she sees a lot more than she sees me.

Hope all goes well with your Bipap therapy...keep us posted Pam.

mar

[-SWS]

...If it will help you guys feel better I will report my AHI every morning...It was 19+ two and three nights ago but I got it down to 11+ last night..

This should end a lot of the angsting over AHIs; everyone can now think to themselves, "Gee, I'm not that bad!" Thanks Mar!

How're you doing anyway? Haven't read any posts from you lately...gone to the neuro yet?

How about a brief or even detailed update here, Mar?

I've also been wondering how your energy levels have been holding up with the new thyroid treatment. Was that your main "fix" or...

[robertmarilyn]

...If it will help you guys feel better I will report my AHI every morning...It was 19+ two and three nights ago but I got it down to 11+ last night..

This should end a lot of the angsting over AHIs; everyone can now think to themselves, "Gee, I'm not that bad!" Thanks Mar!
How're you doing anyway? Haven't read any posts from you lately...gone to the neuro yet?

How about a brief or even detailed update here, Mar?
I've also been wondering how your energy levels have been holding up with the new thyroid treatment. Was that your main "fix" or...

I've been feeling very tired. My thyroid situation actually swung from hypo to extremely hyper between my June 8 appt with the endo and my Aug 26 appt with the endo. Being hypo can cause fatigue but so can being hyper.

When I saw my endo in early July, I had these readings from my blood tests:

(Early July) "My TSI was 94, T4 free was 1, T2 free was 237, cortisol was 13, and acth plasma was 18...according to the chart, those were in the "normal" range. But my TSH was 6.97 (should be less than 2) and my thyroid peroxidase antibodies were 143 (should be less than 35). I definitely have Hashimoto's and it isn't being treated adequately. He wants to keep my TSH under 2 at all times (where as the other doctor wasn't going to make any changes unless I went over 3.5 (I was at 2.75 six months ago when the old doctor last saw me). So my levoxyl has been raised from 100 to 125mcg and I will get another blood test in 6 weeks to see where I am at then."

(End of August) Seven weeks later my TSH was <.01 which is not a good thing. To quote my doctor, "You have an extremely sensitive body! Cancer patients don't have TSH readings that low." So my Levoxyl has been lowered to 112mg and I will have a blood test 6 weeks from that appt and see the doc the week after. I have Hashimoto's thyroiditis and it has apparently swung my body into a hyperthyroid mode at this time. Which can cause fatigue. It's causing some pretty extreme hot flashes too...I feel like a walking volcano.

I saw my sleep doctor last week. My contact dermatitis is getting worse where my masks touch my face so I was able to spend about an hour with the tech while I tried on different masks. I came home with the Soyala Full Face mask which will give me some relief from my LT Swift for Her and my Flexifit 407 where they sit above my upper lip. She wants me to feel free to use any ointments/cremes on my face under my mask, that might help my face, even if it might be something that could degrade the cushions. She knew I was using flannel under the forehead rest of my 407 and that was taking care of the problem there so we discussed cutting more flannel and using it under the cushion of my Soyala and Flexifit, around my face, to see if it make help my skin irritation. She thinks I am really creative (I am) but I didn't tell her how much I have learned from the folks here at CPAPtalk cuz I know most docs don't want to hear that kind of thing.

A patient had lost his cord to his machine and they didn't have the part he needed and I told her that CPAP.com probably carried it and she relayed the info to the patient. She knows that is where I am getting my Resmed filters since her DME doesn't carry them. The comment my endo made about my sensitive body certainly was true about my face and masks too. She gets reports from my endo and my internal med doc so that she knows what is going on in those areas.

I am making copies of my detailed data and a summary of the latest month for my next appt with my sleep doc on Oct 13 because she asked me to do so. They haven't been able to read my card at all...even when I have brought my machine with me. I'm not making much progress on preventing the contact dermatitis but I am doing a good job at controlling leaks (it is kind of difficult to do with the full face mask since there is such a fine line between leaking and having things too tight), I'm sticking to a regular bedtime/getting up schedule, I feel like I am doing what I can to help my cpap therapy go as well as it can, and I know that when I go to the neuro, to be prepared for changes in the meds I am taking.

So to answer your question about my energy levels...they are low. But the huge swing in my thyroid readings could account for that...being so hyper is not good. Last night my AHI was 10.9 (1.4 apnea/9.5 hypopnea) which is pretty good for me esp since my AHI has been closer to 20 many nights. I was trying out the auto mode of my machine with settings of 11-14 but it doesn't seem to respond to a lot of my events. Now that it getting closer to time for me to give my doctor my detailed reports, I am running my machine on CPAP with a pressure of 11 and leaving things like that so that we can have several weeks at one setting. I make notes of what mask I use each night on the report.

We've been getting my trailer ready for whenever I can go to a ride and I have my new truck to pull it now. My husband and I are tentatively planning for me to go to a ride across town (most are not anywhere near that close) in Nov and that way he can come assist me the day of the ride. I haven't needed assistance before but I think that is the best way for me to do a ride right now, if I am physically ready. Before then I will need to have been able to do the conditioning and right now it isn't happening.

None of this is meant to be griping. My sleep doctor has done a lot to make sure I can see the neuro doctor...getting permission from my insurance company for the EEG and MRI's so that she was able to send those and my sleep studies to the neuro to see...that is how I am getting in so soon and at all...the neuros here are so overbooked that there is a 5 month wait if you can get in at all now.

I will let you guys know what the neuro says...I'm prepared for medicine changes...I've learned a lot from what Muffy has said about them disturbing REM. I'm just letting things be since I am so close to the appt date. I'm not sleeping as well as I was when I first started taking the Clonazepam but I know that is not a long term solution, if it is a solution at all.

mar this icon fits because my face is red right now from my masks But I have more old flannel that I will cut up to see if it will work between my mask and my skin...my skin seems to like flannel.

[Muse-Inc]

Wow, what an adventure you're in Mar! Glad to know you feel good enough for the upcoming ride, hope it's wonderful! Try that DermaE Alphalipoderm cream if ya can find it (health foord store or Whole Foods maybe) 'cause both its alpha lipoic acid and green tea extract are powerful anti-inflammatories. The first works both inside and outside the cell (very rare) to protect and promote healing. It worked like a charm on the blisters I was getting from the oral cushion...used it 3-4 times/day under or over makeup. Also have to spray the silicon with vinegar and let sit 2-3 mins before rinsing very well to remove soap residues. Keep us posted in the ride and doc visits! I know we're all rooting for ya to find resolution.

[robertmarilyn]

Wow, what an adventure you're in Mar! Glad to know you feel good enough for the upcoming ride, hope it's wonderful! Try that DermaE Alphalipoderm cream if ya can find it (health foord store or Whole Foods maybe) 'cause both its alpha lipoic acid and green tea extract are powerful anti-inflammatories. The first works both inside and outside the cell (very rare) to protect and promote healing. It worked like a charm on the blisters I was getting from the oral cushion...used it 3-4 times/day under or over makeup. Also have to spray the silicon with vinegar and let sit 2-3 mins before rinsing very well to remove soap residues. Keep us posted in the ride and doc visits! I know we're all rooting for ya to find resolution.

I feel good enough to "think" I'm going to go to rides eventually. I'm sure I'll feel better tomorrow.

I've been looking for the DermaE Alphalipoderm cream...carry the name with me when I go to town (town is pretty far away from us since we actually live in an adjoining county to El Paso) and should have just ordered it online since I can't find it anywhere. I haven't forgotten about it. I've been trying some things my internist and my sleep doctor recommended/gave me.

Thanks for the well wishes...I will kept ya'll posted.

mar

[SaltLakeJan]

Mar,
I'm still following your roller-coaster health experiences. Just reading one example of how your body changes and requires different levels of medicine makes me feel frustrated for you. I want you to know that I think about you and am interested in knowing how you are doing. I am so sorry you are still (always and forever it seems) "So very tired and it isn't getting better." Each time I get a PM from you or read one of your posts, I have great hopes everything will have improved for you. Than I find, you conquer one thing and something else occurs. I was so sorry to read about that.

I do have one suggestion for your facial irritation. I needed a shield between my face and mask. My mask rests just above my upper lip, and was rubbing it raw. I went to JoAnn's fabric store. (It is also on-line.) I got a 100% cotton knit fabric; they told me is a very fine denier. It is like t-shirt material, but much finer. I expermented until I had the size I needed to protect my upper lip. I can use one piece several times. Because the cotton is so fine, it rolls and contracts. The pieces I use are so small I throw them away in a few days. I called JoAnn's to ask if they still carried it. The clerk told me I would have to bring a piece in to compare, so I'm not surre. I don't know for sure, but a knit might be a lot softer on your face than flannel.

With your optomistic attitude, I think you will have the greatest ride of your life.

I will never forget all the kindnesses and support you have given me.

Hugs from Jan

[Muffy]

Did you ever get your old sleep studies? You know, the ones we were going to get when we showed up at the door with the



Muffy

PS - I am sooooooo down after last weekend.

m.