so very tired and it isn't getting better

[riverdreamer]

I think it would be nice to get JoyD. and riverdreamer's information about thyroid, fatigue, hormones, integrative medicine, etc. submitted to our collective wisdom section. Any thoughts about whether it's better to submit what we have in this thread or somehow consolidate all that in a separate thread first? Riverdreamer and Joy, what are your preferences? If a separate thread about integrative medicine, then others might want to add information. Thanks for that highly valuable information, BTW!!!

I would be happy to help put together a thread on integrative issues. I'm sure there are others who could contribute, in addition to those who have already. Makes sense to copy some of what is in here to a separate thread, just to make it easier to find, and to not hijack this one. I will be busy tomorrow, but feel free to copy any of my info if you want to get things started.

[BleepingBeauty]

Hi, mar.

If I'm not mistaken, you were going in for your tests yesterday and today. Just wanted to let you know I'm thinking of you and hoping all is going well.

Hurry back. We miss you around here.

[DoriC]

Yes, Tues 6/2 was the big day. Any news yet?

[SaltLakeJan]

Hi Mar,

These are big eventful days for you. They may change the course of your treatment. We are thinking about you, and hoping your remarkable endurance will help you get through the long tests. JAN

[robertmarilyn]

Thanks all of you for thinking of me and asking about me.

I spent 21 hours at the sleep clinic. The sleep doctors decided to start me off with a machine because they wanted me to get in as much GOOD sleep as I could and so didn't want me to have any time without the machine. (After the study the doctor isn't even sure I need to be on a machine and the machine did cause me to have air in my stomach so in hindsight, I think if we were looking for better sleep for me, I would have been more likely to get it WITHOUT the machine).

I took my white noise sound machine and am glad I did because of the outside traffic noise and how noisy the clinic was...lots of doors slamming and running up and down the halls, all by the two male techs ...it reminded me of the noise you'd hear at a busy Motel 6, when a bunch of college kids are there. But the techs were nice and they did a great job of keeping an eye out for loose electrodes...I really flopped around a LOT and they had to add extra tape to my leg wires several times during the night. I was doing a very good job of Restless Leg Syndrome for the first several hours...my legs didn't hurt but they bothered me and I kept having to move them around...that happens to me when I am having trouble sleeping...usually I would have gotten up and read when I have felt like I did last night but that would have messed up the sleep study even more so I just tried to sleep.

I had a very restless night and would wake up often...I had discussed my 'air in my stomach' problem with one of the techs and I don't know if that had anything to do with things but I never felt like the pressure got up really high on the machine. Which is good because I was still having problems feeling bloated with air but I did not have any acid reflux problems. I knew that they were not going to wake me up in the morning until 8 am (I was in bed and on the machine by 10pm)...the docs were hoping for as much REM as possible yet I did need to be woken up at 8 so that my series of 4 naps could get started at 10am (then noon, 2pm and 4pm).

I had a dream that I thought was funny...naturally it didn't make a lot of sense but I dreamed I was having a sleep test at a sleep clinic (how original) and the sleep clinic was a refurbished horse barn (everything was adobed over...that was the extent of the refurbishing)...my sleep room was a horse stall. The two techs from last night were in the dream and they were debating/discussing wave forms....smooth waves, jagged waves, things like that...I think the discussions came from some of dsm's posts that I'd seen in the past.

Anyway, it seemed like a long night, but I think that was mostly because of my stomach feeling irritated. At 8am the guy techs were replaced by a gal tech and not long after that the second sleep doctor (the one who spent two hours fitting my mask two weeks ago) came in...she apparently is the lab sleep doctor and the one responsible for rating and evaluating the data from the tests. Between my 4 naps I would read, work puzzles, and watch the news in their waiting room.

I slept during each nap time. But the nap where I slept the hardest was the last one at 4pm...unlike the others, on that one, I seemed to fall asleep immediately and slept hard...when the tech told me to wake up over the loudspeaker, I said OK, and then just went right back to sleep and she immediately told me to GET UP. She was on to me...you can tell she's a mom in real life The doctor came in to talk to me then and asked me about the last nap and I told her that was the way I would like to sleep more often. She said I really slept good then and she has no idea why...she told me that all my other sleep had been extremely fragmented with a large number of arousals.

She says she has a lot of data to go over on me and there was a lot going on. But she isn't sure I have a breathing problem or sleep apnea at all. She wants to get all the data together and analyzed and will go over it with the other doctor and she said that it'd probably be a good idea down the line to do a night on me without the machine because she isn't sure I need to use one. I know that I wore the oximeter on my finger for the night study and the first nap...after that they didn't have me wear it...I got the impression that my oxygen levels were ok the entire time and there was no need to keep recording it.

So my sleep is very active and fragmented and very little of it is deep. She pretty much said "No wonder you are so tired" but she isn't sure yet what needs to be done and what is going on. She didn't want to tell me not to use the machine during the two weeks until my appointment.

About my naps...I woke up NOT refreshed from the first 3 naps...in fact, after the third nap, driving home seemed like a hard to do idea...since I felt so unrefreshed. Then I had nap number 4 and just fell into a good sleep and woke up from that one feeling good (even though I was sleeping so good that if the tech had let me I would have gone right back to sleeping hard immediately). Also, I had told the doctor that I would wake up throughout the night violently, every night and often throughout each night. The doctor told me she now sees what I was talking about because I did that several times during my little naps. The tech had also mentioned how my brain had all these spikes of activity.

Now I just have to wait to get things explained to me on June 16. I don't want to use the machine at a pressure that continues to cause intense pain and keeps me from being able to stand in the morning so I plan to keep the pressure at no higher than 10 and with some EPR (probably 2 for now). I have no desire to cause stomach, esophagus, GERD, etc problems when I have never had them before using a machine. The doctor is still perplexed that I am having this problem since she has never run across someone whose acid reflux problem wasn't helped by going on the machine...but I never had a problem before going on the machine so I guess I'm different what else is new

I know this is fragmented (just like my sleep) but I'm still loopy from a night and day of sleeping and doing puzzles and being very very bored. I have decided that night/day testing thing would be a good way of teaching a person that it's better not to complain...complainers get to do the sleep/day tests. I do know that the doctors will have learned something...something or many things are not working right with me...I'm not sure how easy it will be to pin things down. I'm not on much in the way of meds and I am at a healthy weight and I am fit and work out. Of course, that has been the case all my life and I have always had something going on to cause me to feel very fatigued.

Between now and my appointment to have the results explained to me, I plan to ride my horses...and continue to work out. Even if we don't get things figured out soon, I am going to make it my goal to do an endurance ride in July. I think it is time to get back in the saddle literally...even if I need to take a break again after that...it is necessary for my peace of mind. Oh, since this is my forth sleep test, I've learned to take a cap to wear after the test because there is no way to get all the goopy gunk out of my hair and off my head without a very hot shower. So I'm sitting here still wearing the cap I left the clinic in...now to degunk my hair...this could take a while
mar

[BleepingBeauty]

Hi, mar.

Well, I'm glad you're done with this part of the diagnostic testing. It sounds like it was a rough two days for you, and I sure hope the doctors can discern what is going on (and/or eliminate issues that are apparently not a factor) in your continuing fatigue. I know it's frustrating when you know something is wrong, but nobody seems to know exactly what that is.

I'll cross my fingers that you're able to sleep as "hard" as you did during your last nap of the study. That must've felt great. And I can certainly relate re: the goopy, sticky hair after a sleep study, having been through five of them now. A hat is a necessity in the morning, if you don't want to scare strangers on your way home.

Welcome back, mar. You've been missed.

P.S. to the Muffinman: Don't badger me about being here so close to bedtime. I haven't been on the pc for the past few hours; just logged in to see if mar had posted. I'm going to bed now!

[SaltLakeJan]

Mar,
Welcome back - It is good to know you had the "Push" to put yourself through your grueling sleep tests. I am pleased that you will get the results on the 12th . . Sounds like you may get some definitive answers, as least as far as sleep apnea is concerned. If it is determined that you do not have apnea, and have worked so hard to stay on the machine despite the gerd - that's hard.

But, the diagnosis you get on the 12, may contain the answers you have looked for so long. I hope so Mar, you have done everything that has been asked of you - In fact, like in endurance racing, you have gone the extra mile. But, then you always have done that.

You are a terrific competitor.
Jan

[DoriC]

Mar, I can't even imagine what that experience was like, glad it's behind you. I'll be looking forward to hearing what DX they come up with so we can see some of the results of what medical technology can do . You are one strong woman. Dori

[robertmarilyn]

Mar, I can't even imagine what that experience was like, glad it's behind you. I'll be looking forward to hearing what DX they come up with so we can see some of the results of what medical technology can do . You are one strong woman. Dori

Thanks Dori, Jan, and BB,

Both the lab doctor and -SWS had mentioned to me, in the past, that there is the possibility that I don't even have sleep apnea. And at this point what little data I know about points towards other things. I'm pretty much preparing myself for a lot of non answers or answers that may eliminate things but not necessarily give me an answer to what could make me feel more rested. But hopefully I will be surprised and when I see the doctors on June 16 they may have some definite leads and ideas to pursue.

I'm definitely going to look deeper into my thyroid situation. In fact, I am checking out the links and websites I have been given as I try to figure out what doctors might work for me.

Today I got on my 3 1/2 year old gelding for the first time. I got on him bareback and didn't stay on his back long but it was a non event. So for the first time today, he had someone on his back. These little/big steps are big for me because they mean that I have been still moving forward even though I have been tired. During the last few months I have done a lot with the 3 1/2 year old gelding and my 2 year old filly. It hasn't hurt my 13 and 14 year old geldings to have had some time off from riding...between those two horses, they have almost 4000 competition miles (all with me riding them) and it isn't like any of the horses are growing moss under there feet since they have 5 acres to run on and each other to play with...not to mention the fact that our average rainfall of 9 inches a year just doesn't allow moss to grow anyway.

mar

[-SWS]

Mar, I hope your sleep study results prove immensely helpful. And I'm so glad to see you getting back in the saddle for an endurance ride!

[-SWS]

That might be very helpful to many people searching for their own answers. Hey, whatever you want to do with my posts is A-okay with me. I'm thinking that since this thread covers an assortment of topics, perhaps consolidating it under "Integrative Medicine" or "OSA with Unresolved Hypothyroidism", etc. might offer a more "user-friendly" read. Whatever you think, SWS. Let me know if I can be of any further help.

I would be happy to help put together a thread on integrative issues. I'm sure there are others who could contribute, in addition to those who have already. Makes sense to copy some of what is in here to a separate thread, just to make it easier to find, and to not hijack this one. I will be busy tomorrow, but feel free to copy any of my info if you want to get things started.

Thanks for that generous offer, JoyD. and riverdreamer!

I'm still getting caught up with outstanding work in the "real world". But I would love to PM both of you in the very near future to get a dedicated integrative medicine thread started. I don't have expertise in this area, but would love to help---be a "quote gopher," get the coffee, whatever.

And I'd love to pin that same integrative medicine to the Wisdom section up top for my own selfish purposes: so I can easily access it in the future. And that sure seems like a perfect topic for a message board where many are in search of answers relative to their residual fatigue despite optimal CPAP treatment. A spot on topic for any apnea message board IMHO.

[robertmarilyn]

And I'd love to pin that same integrative medicine to the Wisdom section up top for my own selfish purposes: so I can easily access it in the future. And that sure seems like a perfect topic for a message board where many are in search of answers relative to their residual fatigue despite optimal CPAP treatment. A spot on topic for any apnea message board IMHO.

Most definitely a spot on topic for any apnea message board. Whatever my fatigue problems stem from, I seem to exhibit several options to choose from that could cause fatigue problems. Something very important, that has been touched on thus far (if not in this thread, than in BB's thread), is how sensitive thyroid meds are to just about anything that is ingested. As I learned about how hypothyroidism could be causing me so many problems, I came across all the ways that we can cause our meds to not be efficient and I am not sure that this problem is stressed enough. At least it wasn't stressed by my endocrinologist doctor at all.

Here is an incomplete list of things that can interact with Levoxyl (a common med for hypothyroidism):

http://drugs.emedtv.com/levoxyl/levoxyl ... tions.html

Antacids or Gas-Relieving Medications
Antacids can bind to Levoxyl in the digestive tract, preventing it from being absorbed into the body. Make sure to separate Levoxyl and antacids or gas-relieving medications by at least four hours.

Antidepressant Medications
Combining Levoxyl with some antidepressants may change the amount of Levoxyl your body needs, and your healthcare provider may need to adjust your Levoxyl dosage. Also, taking certain antidepressants with Levoxyl may increase the risk of heart problems, such as an irregular heart rhythm (arrhythmia). Be sure to check with your healthcare provider before taking these medications together.

Calcium Supplements
Calcium can bind to Levoxyl in the digestive tract, preventing it from being absorbed into the body. Make sure to separate Levoxyl and calcium by at least four hours.

Certain Seizure Medications
Taking Levoxyl with some seizure medications may change the amount of Levoxyl your body needs. As a result, your healthcare provider may need to adjust your Levoxyl dosage.

Cholestyramine
Cholestyramine can bind to Levoxyl in the digestive tract, preventing it from being absorbed into the body. Make sure to separate Levoxyl and cholestyramine by at least four hours.

Colestipol
Colestipol can bind to Levoxyl in the digestive tract, preventing it from being absorbed into the body. Make sure to separate Levoxyl and colestipol by at least four hours.

Diabetes Medications
When you first start Levoxyl (or increase your dose), your healthcare provider may need to increase the dose of your diabetes medications. Check with your healthcare provider before taking Levoxyl if you are taking diabetes medications.

Estrogens, such as birth control pills, patches, rings, or hormone replacement therapy (HRT)

Iron (including iron found in multivitamins) Iron can bind to Levoxyl in the digestive tract, preventing it from being absorbed into the body. Make sure to separate Levoxyl and iron supplements by at least by 4 hours.

Orlistat (Alli™, Xenical®)

Rifampin (Rifadin®)

Warfarin (Coumadin®, Jantove) Combining warfarin with Levoxyl may increase your risk of bleeding. Your healthcare provider may need to monitor you more closely and adjust your warfarin dose, especially when you start or stop taking Levoxyl.

Also -Food Interactions

Consumption of certain foods may affect levothyroxine absorption thereby necessitating adjustments in dosing. Soybean flour (infant formula), cotton seed meal, walnuts, and dietary fiber may bind and decrease the absorption of levothyroxine sodium from the GI tract.

We are supposed to take Levoxyl on an empty stomach when we get up and not eat for one hour. We are supposed to not have calcium or iron or high fiber within 4 hours of Levoxyl. That just blows almost all my usual breakfast meals out of the water (almost all cereals are fortified with calcium and iron and the milk we use with cereal had calcium). Even plain old oatmeal is fortified with iron and almost all bread is fortified. So I did some research and found that some thyroid patients have had success with taking their Levoxyl at night.

http://thyroid.about.com/od/thyroiddrug ... edtime.htm

This seemed like a good idea for me since I need to be able to get up and eat breakfast without waiting an hour (because I can feel so tired so often...working out and riding my horses as soon as I can after getting up is important...I need to take advantage of any energy I have, when I have it, and waiting an hour after I get up before I can eat breakfast delays when I can start working out or riding...not a good idea in my case) and I need to be sure things don't interact with my thyroid meds ((daily vitamin/mineral supplement, calcium supplement, antacid meds that I had been taking, fiber requirements through supplements or food, antidepressants (I was on Zoloft until recently) etc)). BUT taking Levoxyl at night can interfere with sleep and sleep problems are exactly what we are trying to resolve on this board

There are so many factors that interfere with good sleep. Yet things like needing to take drugs such as Levoxyl also need consideration in the mix of meds and healthy lifestyle habits that we incorporate in our lives. And we can't rely on our doctors to help us keep these things straight...it is in our own best interests to take the time and effort to attempt to figure out the best way to take our med, supplements, food and drink, so that the whole MESS works together rather than cancels each other out.

mar

[-SWS]

The artifact numbers are very high... during that second night your artifact rate goes way up to 27.3 %. That means about one fourth of the data is suspect. But that probably also means you had a whole heck of a lot of motion that night to achieve that 27.3 % artifact rate.

What does that mean besides having collected so many bad data samples throughout the night? It means with that much motion throughout the night, we just may have a contributing factor or reason explaining why you feel so fatigued the next day. You just may have an issue with periodic limb movements or excessive tossing and turning because of an inability to maintain sleep. Any clues which?

On that note I just ordered one of those CMS-50 oximeters. My previous oximeter is rock-solid during motion (w/around 4-second averaging---every 4th "heart beat" averaging actually).

But for only $99 (free shipping) I'm hoping to see if I experience serious limb motion or excessive tossing and turning while sleeping! Those are my true motives! And the bundled Vista-compatible software is way cool.

Mar, it will be interesting to hear if you experienced any limb movements or excessive positional sleep changes during your recent PSG.

[robertmarilyn]

The artifact numbers are very high... during that second night your artifact rate goes way up to 27.3 %. That means about one fourth of the data is suspect. But that probably also means you had a whole heck of a lot of motion that night to achieve that 27.3 % artifact rate.
What does that mean besides having collected so many bad data samples throughout the night? It means with that much motion throughout the night, we just may have a contributing factor or reason explaining why you feel so fatigued the next day. You just may have an issue with periodic limb movements or excessive tossing and turning because of an inability to maintain sleep. Any clues which?

On that note I just ordered one of those CMS-50 oximeters. My previous oximeter is rock-solid during motion (w/around 4-second averaging---every 4th "heart beat" averaging actually).

But for only $99 (free shipping) I'm hoping to see if I experience serious limb motion or excessive tossing and turning while sleeping! Those are my true motives! And the bundled Vista-compatible software is way cool.

Wow, that's a good price. And I want to see if you can beat my 27.3% artifacts...heck, anyone who apparently moves around as much as I do, deserves to be tired

Mar, it will be interesting to hear if you experienced any limb movements or excessive positional sleep changes during your recent PSG.

I know I moved around a lot during the first hours...finally kicked all my covers off and managed to loosen the electrodes on my right leg, several times. When I mentioned that to the lab doctor the next day, she acted like she hadn't noticed that when she looked at the results but I'm not sure how much of my data she had looked at by that time.

I wonder if all my flopping around is because of my super active mind? I've been doing some reading based on the link you sent to me in a PM. It will be interesting to hear what the doctors say since I get the idea from things said by the lab doctor, that she is leaning away from me having sleep apnea or even any type of breathing problem. I think this COULD be leading to a highly active brain diagnosis.

I did ride each of my horses the last two days...15 miles both days. Kind of hanging in there until I see the sleep doctors and hear what they suggest from here. -SWS, we want to see your oximeter chart when you get your new oximeter
mar

[twasbrillig]

Late post - it's been on my mind, Marilyn, that you mention your legs kicking about at your most recent study. Maybe I missed something, (this has been a long thread) - but did your doctors rule out Restless Leg Syndrome? You mentioned it jokingly, but didn't the techs and doctors think all the leg kicking was a sign of something being wrong?