so very tired and it isn't getting better

[DoriC]

Hi Mar, I've been thinking of you and I just spotted your latest post. There must be an epidemic of thyroid problems going around. I've heard of 3 of my friends in the last 2 weeks testing with high/low thyroid numbers and needing further testing. But you've been going through so much, it's got to get better. I have nothing to add except that at the beginning of therapy Mike had a severe facial rash, red, blistery,etc and the Derm RXd Desonide 0.5 Cream to apply 2x daily for a week. That was the only time he couldn't wear his mask for 2 nights. Whether I learned how to adjust his mask properly or his face just got used to it, it never got that bad again. I have also used it on his arms as his skin gets rashes and bruises easily from aspirin and prednisone regimen. It helps there too. All the best, Dori

[robertmarilyn]

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 really like my new sleep doctor and her staff. When I tried on masks last week, the fittings were done in one of the sleep lab rooms (actually all doctor appts are held in the same rooms) and the tech had me lay on my back and sides and this was with the masks under machine pressure. They really do the mask fittings the way they should be done. A husband and wife couple I know, who started CPAP before I did, have now changed to my doctor because of what I told them about her and I know the wife got the same time and care with her mask fittings as I did. (The husband hasn't had his first appt yet.)

Also the sleep doctor spent about 30 minutes with me as we discussed my meds, how I am feeling, ideas to help my face, and other things.

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.

Good idea. The flannel I have used has been just under the headrest parts of my masks. I have a thinner material that I have been trying under the actual mask seal area. My cutting and shaping of the pieces to go under my masks needs improvement but I do think that using the barrier is helping my situation. Also I am able to use more ointment on my skin, when I have a cloth barrier.

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

Thank you Jan...I'm glad I can help and you've been great too!
mar

[robertmarilyn]

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

BIG GUN
Muffy

Muffy, I really do need your help getting them. When can you be here? If you aren't here by the time is see the neurologist, I'm going to ask him to get them.

PS - I am sooooooo down after last weekend.
m.

Is it because OU got upset? Or.....?
mar

[robertmarilyn]

Hi Mar, I've been thinking of you and I just spotted your latest post. There must be an epidemic of thyroid problems going around. I've heard of 3 of my friends in the last 2 weeks testing with high/low thyroid numbers and needing further testing. But you've been going through so much, it's got to get better.

The swing can be part of Hashimoto's doing it's thing...not fun. Several years ago when my thyroid was tested and we discovered I had a problem, my TSH was 187 (or it might have been 167) which is extremely high...coma inducing high...once on meds, within 7 weeks, it had gone down to under 5. This doctor had said that we'd be keeping a close eye on things even before this latest reading...I may be seeing a lot of him.

I have nothing to add except that at the beginning of therapy Mike had a severe facial rash, red, blistery,etc and the Derm RXd Desonide 0.5 Cream to apply 2x daily for a week. That was the only time he couldn't wear his mask for 2 nights. Whether I learned how to adjust his mask properly or his face just got used to it, it never got that bad again. I have also used it on his arms as his skin gets rashes and bruises easily from aspirin and prednisone regimen. It helps there too. All the best, Dori

Thanks for telling me that things got better for Mike. And his rash sounded even more uncomfortable than what I am dealing with...thus far no blisters...it is more like severe sunburn. All I need to do now is get the total face mask (that covers the eyes too) and I will be red over my entire face. These past few days I have been using my LT Swift for Her, to allow the other areas to recover. The nipple cream is what saves me...without it I could not wear the Swift since it would make the inside of my nose extremely sore within a couple of hours.

I looked up Derm RXd Desonide 0.5 Cream...sounds like pretty potent stuff! I will discuss it with my doctor to see if she thinks it may help. Or maybe I should come live with you for a while so you can fix me. You have done a remarkable job for Mike...knowing you and how you guys have progressed so well over this time, has been a highlight of being on this forum. It hasn't been easy but you have found ways to make it work.
mar

[DoriC]

Or maybe I should come live with you for a while so you can fix me. mar[/color]

You're welcome any time but you should know I'm very cranky in the morning before my coffee! Sometimes it last until bedtime! Still wanna come?

[Muffy]

If you aren't here by the time is see the neurologist, I'm going to ask him to get them.

I think they're important to investigate this point:

Also, what's up with that pressure titration (literally)? Why increase pressure in the absence of events? Why not go down (like to "off" for instance)?

I noticed that. Was it because I didn't go into REM at the lower pressures? The higher the pressure, the more stomach pain I have so I'd like be on the lowest pressure that would work. I'd love it if my best pressure was OFF (no machine) but they didn't do any testing without the machine. I did have a test without the machine in Feb, by a different doctor and then a titration test by him. He said I needed a pressure of 14 which tears my stomach to pieces. He is the doctor who says he doesn't have to give me more than the 3 summary pages of my tests.

Given the problems you're having, the question that really needs to be answered is "Do you need CPAP at all?" With no events at 7 cmH2O, there appears to be no reason to increase the pressure-- they should have really tried no pressure to see how you responded.

In other words, your SBD, if present at all, may not even need to be treated. I would say a good working hypothesis would be you have "bad sleep", and CPAP makes it worse.

Can you edit this graph to make the "arousal" ticks (next-to-last channel) a little more clear?

PS - I am sooooooo down after last weekend.

Is it because OU got upset? Or.....?

AND Jermaine's out. AND Sam's out. AND morale is shot. AND...

Muffy

[robertmarilyn]

Or maybe I should come live with you for a while so you can fix me. mar[/color]

You're welcome any time but you should know I'm very cranky in the morning before my coffee! Sometimes it last until bedtime! Still wanna come?

Uh oh, sounds like it could be CPAP bootcamp with you cracking the whip...poor hubby
mar

[robertmarilyn]

Can you edit this graph to make the "arousal" ticks (next-to-last channel) a little more clear?

I've been trying to get you a better picture but the copy I have barely shows anything. In fact, I really didn't know there were marks there until you mentioned them. But here is the best of what I have come up with so far. Let me know if there are things I could be doing differently that may make the picture better for you.

PS - I am sooooooo down after last weekend.

Is it because OU got upset? Or.....?

AND Jermaine's out. AND Sam's out. AND morale is shot. AND...
Muffy

Starting out crummy and going downhill from there...BTW, did you go to OU?
mar

[Muffy]

I've been trying to get you a better picture but the copy I have barely shows anything. In fact, I really didn't know there were marks there until you mentioned them. But here is the best of what I have come up with so far. Let me know if there are things I could be doing differently that may make the picture better for you.

That's perfect, it shows exactly what we need to see.

That's a toxic number of arousals. In order to try to better understand their significance, let's go back and consider the effects of SDB and then transition into the current issue(s). From a prior post:

There are basically 3 things in SBD that generate problems:

Breathing against an obstructed/restricted airway and desaturations. These will be responsible for cardiovascular consequences such as risk of stroke, hypertension, cardiac issues, and the like; and

Disturbances in sleep continuity. With rare exception (noted elsewhere, and it's almost academic anyway) apneas and hypopneas will have concomitant arousal, and RERAs, by definition, all need an arousal. It is the disturbances in sleep continuity that generate EDS.

However, in your CPAP titration, there are no respiratory events, it's all arousals. And that arousal index at 27.9 should be considered to be just as severe and need just as much as attention as an RDI with the same value if you're looking to fix EDS.

If we look at the other sleep architectures and they have the same pattern (wake, arousals, fragmentation, stable O2 saturation) then any respiratory events need close scrutiny to see if they are in fact, respiratory events, or variable breathing asociated with poor sleep.

did you go to OU?

No, but there is an interesting story there.

Muffy

[robertmarilyn]

However, in your CPAP titration, there are no respiratory events, it's all arousals. And that arousal index at 27.9 should be considered to be just as severe and need just as much as attention as an RDI with the same value if you're looking to fix EDS.

If we look at the other sleep architectures and they have the same pattern (wake, arousals, fragmentation, stable O2 saturation) then any respiratory events need close scrutiny to see if they are in fact, respiratory events, or variable breathing asociated with poor sleep.

Thanks again for your help Muffy. So, there are some drugs that can be changed to something less harmful to REM (or stopped altogether)...what else might I need to do help my poor sleep (which could help my variable breathing). And it goes without saying but I will say it anyway...it would be wonderful to not need to use a machine and mask, if it turned out that I don't need to do so.

I was just reading about the sleep arousal index and saw this article:

http://meeting.chestjournal.org/cgi/con ... 8/4/380S-b

It mentioned that "Spontaneous arousals (SA) are also considered among the clinical indicators of upper airway resistance syndrome (UARS)." Could this be one of the reasons my doctor things I have UARS and needed the pressure to be at 11 even without having AHIs at a lower pressure?

did you go to OU?

No, but there is an interesting story there.
Muffy

Will you tell us the story? This thread could use some entertainment.
mar

[Muffy]

I don't see anything other than the abstract by those authors in http://meeting.chestjournal.org/cgi/con ... 8/4/380S-b, so their methodology cannot be reviewed. Presently, if one is using pressure transducers and respiratory inductance plethysmography, which is the standard of care, subtle respiratory events can be differentiated, and if there is an association with an arousal, then the event is termed a RERA. This would correspond to what the authors imply are "spontaneous" arousals in the abstract. Your sleep study reports out RERAs, so one may assume they are using current technology, and the spontaneous events are truly spontaneous.

However, let's say they could be respiratory in nature, which is not an unreasonable hypothesis (BTW, the article studies patients on ambient pressure, not on CPAP). Then the treatment approach would be to see if the SAs respond to CPAP and if the patient's symptoms improve. In your case, they don't and you didn't. Given the distribution of the SAs throughout the sleep study, they do not appear to be treatment-responsive.

What is your present medication list, and what time of day do you take them? Are you taking the Pristiq? Did you know that Pristiq is the new Effexor? Frankly, the old Effexor wasn't particularly sleep-friendly.

Muffy

[robertmarilyn]

I don't see anything other than the abstract by those authors in http://meeting.chestjournal.org/cgi/con ... 8/4/380S-b, so their methodology cannot be reviewed. Presently, if one is using pressure transducers and respiratory inductance plethysmography, which is the standard of care, subtle respiratory events can be differentiated, and if there is an association with an arousal, then the event is termed a RERA. This would correspond to what the authors imply are "spontaneous" arousals in the abstract. Your sleep study reports out RERAs, so one may assume they are using current technology, and the spontaneous events are truly spontaneous.

However, let's say they could be respiratory in nature, which is not an unreasonable hypothesis (BTW, the article studies patients on ambient pressure, not on CPAP). Then the treatment approach would be to see if the SAs respond to CPAP and if the patient's symptoms improve. In your case, they don't and you didn't. Given the distribution of the SAs throughout the sleep study, they do not appear to be treatment-responsive.

What is your present medication list, and what time of day do you take them? Are you taking the Pristiq? Did you know that Pristiq is the new Effexor? Frankly, the old Effexor wasn't particularly sleep-friendly.

Muffy

Yes I am taking Pristiq...here's my list of meds:

Levoxyl 112mcg AM (for thyroid,take as soon as I get up, wait an hour before eating, eat, and then take my other AM meds)

Pristiq 50mg AM (new med for me to replace 150 mg of Zoloft...I feel comfortable with the idea of giving it up and I'm sure my IM doctor would be agreeable to the idea. BTW, I didn't know anything about Effexor until I just googled it and read about it. Sounds like something I wouldn't want to take if I didn't have to take it...so I guess I would feel the same way about Pristiq.)

Nuvigil 250mg AM (this is a new med for me...since I have been on it I can't tell that my sleep is any worse but then it has been so crummy that I'm not sure it can get worse.)

Allegra D 24 hour tab AM (you told me this is bad for sleep and I am willing to get off of it but I need something that can take it's place...my allergies are really really bad)

Singulair 10mg AM (for allergies)

Fluticasone 50mcg AM (nasal spray for allergies)

Clonazepam .25mg PM (my doctor and I discussed this last week. She had told me, right after I started taking it that I could try .5mg but I felt like it knocked me out and then I felt groggier in the AM. She told me that I could go down to .25 or none at all so I have been using either .25 or none. Now that I know more about it, I really don't want to take it. Esp if the 'knocked out' sleep isn't sleep that will help me.)

I used to depend of caffeine, first thing in the AM to even get me going at all (but I would not have any except early AM since I knew it wouldn't be good for sleep) but I have not had any caffeine for several months. Which has taken away any jump start I got...it isn't like the Nuvigil has rev-ed me up but with it I can stay awake in the car on our trips to town and back...husband drives...even if I do feel very sleepy. Before Nuvigil I would sleep in the car, pretty much once I got in it. And I have not taken any naps since I have been on Nuvigil.)

I did read about each of the medicines I take, before I started taking them. The list of side effects of things can be so long and so contradictory that I try to pay attention to how my body it doing so that I will catch anything odd going on but at the same time, I try not to dwell on the list I read...because it would be easy to think the entire list applies if one thought too hard.)

So, Pristiq, Allegra D, and Nuvigil could/do interfere with sleep, right? And Clonazepam isn't a long term solution for anything, if I understand correctly. When my allergies are not treated adequately, my eyes swell shut, my nose runs nonstop, my head hurts, and I sneeze continually. So that is why I do want to be able to treat them, but of course would ideally like to treat them in a way that will also allow me to sleep.

Thanks for your help,
mar

[Muffy]

So, Pristiq, Allegra D, and Nuvigil could/do interfere with sleep, right?

I think that cocktail needs very close scrutiny.

BTW, perhaps I'm reading too much into your posts, but I get the impression that you feel REM disruption is a major issue, but I'd put that fairly well down on the list. Using the results of your sleep study, I think that until you can get your Sleep Efficiency up from 61.1% to at least 85%, and your Arousal Index down from 27.9 to at least 10.0 (target should really be 5.0), it's going to continue to be a struggle.

Although it seems you attribute much of your present situation to thyroid control, I am curious as all get-out to see if the "New Effexor" (with it's greater specificity) is better at controlling sleep fragmentation than the "Old Effexor".

Or alternatively, perhaps the fexofenadine-desvenlafaxine combination is producing daytime somnolence.

All this underscores the need to absolutely determine if you truly have SBD and is CPAP-responsive, or at this point is just another sleep-disruptor.

Muffy

[robertmarilyn]

So, Pristiq, Allegra D, and Nuvigil could/do interfere with sleep, right?

I think that cocktail needs very close scrutiny.

BTW, perhaps I'm reading too much into your posts, but I get the impression that you feel REM disruption is a major issue, but I'd put that fairly well down on the list. Using the results of your sleep study, I think that until you can get your Sleep Efficiency up from 61.1% to at least 85%, and your Arousal Index down from 27.9 to at least 10.0 (target should really be 5.0), it's going to continue to be a struggle.

I see what you are saying. With the problem being low Sleep Efficiency, if I can improve that aspect, then other aspects of my sleep will improve. And they can't improve without higher Sleep Efficiency. It can get hard for me to clearly see what the exact problem is at times. I don't know how much, if at all, my thyroid situation affects my sleep but if keeping it in line would help me overall, that would be good. I am seeing how important it is to NOT fix anything, with a med that might be bad for my sleep, if at all possible.

Although it seems you attribute much of your present situation to thyroid control, I am curious as all get-out to see if the "New Effexor" (with it's greater specificity) is better at controlling sleep fragmentation than the "Old Effexor".

Or alternatively, perhaps the fexofenadine-desvenlafaxine combination is producing daytime somnolence.

I have only been on the Pristiq for under two months so it could have only affected things in that time period. It would be great if it helps with controlling sleep fragmentation ...not good if it is producing daytime somnolence (which was already there before I started taking Pristiq).

All this underscores the need to absolutely determine if you truly have SBD and is CPAP-responsive, or at this point is just another sleep-disruptor.
Muffy

Ideally, I would have another sleep test, without CPAP, and having been off of all three of the (possibly) offending drugs, for whatever amount of time it would take to get them out of my system. Then we could see what my brain/body is doing on it's own. And then if it looks like I do need CPAP, either with a split study or another study, see how my body/brain does with CPAP.

I am going to find an allergy med that can replace Allegra D to see if that helps things. Also, if Sleep Efficiency improves, there shouldn't be a need for Nuvigil. But Pristiq is where I will start first. Thanks Muffy.

mar

[Muffy]

Cruising the CrazyDrug boards, there seems to be a lot of c/o insomnia when starting out on desvenlafaxine. Some people seem to eventually get used to the stuff.

In the Good News-Bad News category, here's an interesting study:

DVF and HF

Desvenlafaxine for the treatment of vasomotor symptoms associated with menopause: a double-blind, randomized, placebo-controlled trial of efficacy and safety

Objective
The objective of the study was to assess the efficacy and safety of desvenlafaxine (administered as desvenlafaxine succinate) for the treatment of vasomotor symptoms.

Study Design
This was a 26 week, double-blind, placebo-controlled trial of 567 postmenopausal women (mean age, 53.7 years; time since natural menopause, 4.8 years) experiencing 50 or more hot flushes (HFs) per week, randomly assigned to desvenlafaxine (100 or 150 mg) or placebo. Change from baseline in average daily number of moderate to severe HFs and average daily HF severity were compared with placebo at weeks 4, 12, and 26.

Results
A significantly greater decrease from baseline in number of HFs occurred at weeks 4 and 12 with 100 and 150 mg desvenlafaxine compared with placebo (week 12 reductions: 60%, 66%, and 47%, respectively; all P ≤ .002). Only the 150 mg dose showed significant improvement from baseline at 26 weeks compared with placebo (week 26 reductions: 61%, 69%, and 51%, respectively), although the study was not powered to demonstrate efficacy beyond the initial 12 weeks of therapy. The average daily severity decreased significantly more at weeks 4 and 12 with desvenlafaxine compared with placebo (all P ≤ .002). Significantly more desvenlafaxine-treated subjects than placebo-treated subjects discontinued because of adverse events during week 1 only.

Conclusion
Desvenlafaxine is an effective treatment for menopausal HFs.

____________

Curious about those side effects, I went down to the liberry to read that article and see how many patients discontinued desvenalfaxine. It was 28.5%, which struck me as a lot, especially if you're in a study. 93% of patients had adverse events, mostly nausea and dizziness. And that dosage is up there.

Muffy