Feeling hopeless and helpless

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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sharon1965
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Post by sharon1965 » Wed Jan 23, 2008 8:04 pm

I don't know about periodic limb movement disorder, I'd need to check my sleep study again to see if there was any sign of something like that.
amandalee
i couldn't understand why i was still so profoundly tired after 6 weeks on cpap, but then my dr. told me that i had severe plmd...sometimes they wait to see if cpap will address the limb movements, but mine didn't, so i started taking low dose requip...i'm not a big fan of meds, but i think i'd go crazy now without my "jimmy" pills (seinfeld reference)

btw, my limb movements were every 17-30 seconds all night long and they figure about a quarter of the time they caused arousals...add that to the 45 apneas/hour and the fact that my fms bumps me out of REM repeatedly, and doing that math you could safely say that i was getting NO SLEEP...could be this is what's happening to you, darlin'...something to look into, anyway
but yeah, maybe push for that referral to an endo, too

If you always do what you've always done, you'll always get what you've always got...

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Auricula
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Post by Auricula » Wed Jan 23, 2008 8:18 pm

I am terribly sorry that you are still feeling so bad. Have you investigated food allergies or a yeast infection? Here are some links for celiac disease:

http://www.thepatientconnections.com/blog.asp?uid=46

http://www.celiaccentral.org/Do_I_Have_ ... ease_/181/

http://www.glutenfreegirl.blogspot.com

http://glutenfreegirl.blogspot.com/2007 ... sease.html

Having a health condition that leaves you constantly exhausted makes it very difficult to do research to try to diagnose your problem, but your poor results from medical consultations really makes this necessary. I hope that you will find some answers and relief very soon. A

cflame1
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Post by cflame1 » Wed Jan 23, 2008 9:38 pm

How about chronic pain?

alv7722
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Post by alv7722 » Wed Jan 23, 2008 10:12 pm

Have you been tested for hypothyroid? You mentioned skin condition, I did not catch what it was. You also did not say there was a lot of pain involved with the fatigue, which could indicate fibro.

There will be an answer somewhere. Just don't accept "no", from the medical industry. Good Luck. Al V

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kteague
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Still feeling bad

Post by kteague » Wed Jan 23, 2008 10:14 pm

Amandalee,

Not much more to add, just wondering how in depth the iron studies were that diagnosed you as having low iron. Maybe a followup to see how your blood has responded to taking iron, and looking even deeper at all that. Just because you're taking iron doesn't mean your body is absorbing and processing it.

Please do locate your sleep study results to look for clues. Keep in mind that sometimes PLMD doesn't show up strongly until OSA treatment is effective. Usually people with moderate to severe PLMD have very restless sleep and their bed covers are rumpled in the morning. But you say you sleep soundly. Oh well, never hurts to check.

I agree with seeing an endocrinologist. They may refer you to a rheumatologist for CFS evaluation. Have you had an adrenal workup?

When you finally get the help you need and feel up to dancing, we're throwing a party in here!

Kathy

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WearyOne
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Post by WearyOne » Wed Jan 23, 2008 10:18 pm

You are really having a time of it, and I'm so sorry! And to feel so badly when you're doing so much right regarding your health makes it even more upsetting.

So many great suggestions here. I echo getting your adrenal function tested, and your ferritin level. You're taking iron, so the ferritin is probably okay, but it wouldn't hurt to check it anyway. Also female hormones, get those checked. The first thing I thought of was thyroid (since that's my issue), but you said you had that checked. Do you know if they did a thyroid panel (includes T3 and FT4), or just the TSH test? Normally, a TSH (thyroid stimulating hormone) that's "in range" indicates a properly-functioning thyroid. But sometimes even with a normal TSH, the thyroid hormones (T3 and FT4) are still out range, either high or low.

When did you start taking the meds you mentioned? Did you start feeling worse after starting those?

Please keep us posted.

Pam

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Post by alnhwrd » Wed Jan 23, 2008 10:35 pm

Amandalee,

I really have nothing to offer you, except a kind and encouraging word. It sounds like you have covered almost all possibilities, and have worked very hard to overcome your problems. The fact that you have tried so many different things and are still having problems would indicate that there is almost certainly SOMETHING wrong, and it follows that there must be a solution to it somewhere, somehow. Keep on keeping on, and keep on reaching out for help. You will find something that fixes you.

Guest

Post by Guest » Thu Jan 24, 2008 10:27 am

Haven't read this whole thread. Just the first post.

Amanda, have you tried Provigil? It's an antihistime used to help with daytime sleepiness for a variety of disorders. I took it in the first months of my cpap therapy and it was a godsend to me. I would highly encourage you to try it.

I took it in combination with my existing anti-anxiety med at the time - Lexapro (I've since switched that for Prozac), as well as my asthma/allergy cocktails, with no adverse reactions. I could only tolerate 1/2 a pill - a whole pill made me jittery like I was on meth.

I totally sympathize with you. Until you can find a true diagnosis for your problem, maybe Provigil might help you manage to maintain a job and not spiral down into complete life failure.

Hugs,
Barbara


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amandalee
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Post by amandalee » Thu Jan 24, 2008 10:48 am

Thanks for all the suggestions. I've been getting progressively more tired since November (? I think) and but it started getting really bad around the holidays and just keeps getting worse.

I started taking the ortho-tricyclen low and clindamycin (to clear up my acne) in early December. I can't tell if either of those have made me feel worse...

I'm guessing that the thyroid test was probably just TSH. I'm not sure how in depth the ferritin test was... probably not in depth enough.

I don't ever feel like I am in actual pain, just totally exhausted.

I haven't looked into food allergies or yeast yet, thanks for the links.

I still need to take a closer look at my sleep study. After work yesterday, I came home and collapsed on the couch.

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Sundown
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Post by Sundown » Thu Jan 24, 2008 11:00 am

You sound like you are doing everything right, the exercise, the food you eat, your vitamins. What is your working environment? Do you work under fluorescent lights in a cubicle?

From Wikipedia:

Sick building syndrome (SBS) is a combination of ailments (a syndrome) associated with an individual's place of work (office building) or residence. A 1984 World Health Organization report into the syndrome suggested up to 30% of new and remodelled buildings worldwide may be linked to symptoms of SBS. Most of the sick building syndrome is related to poor indoor air quality.[1]

Sick building causes are frequently pinned down to flaws in the heating, ventilation, and air conditioning (HVAC) systems. Other causes have been attributed to contaminants produced by outgassing of some types of building materials, volatile organic compounds, molds (see mold health issues), improper exhaust ventilation of light industrial chemicals used within, or fresh-air intake location / lack of adequate air filtration (see Minimum Efficiency Reporting Value).

Symptoms are often dealt with after-the-fact by boosting the overall turn-over rate of fresh air exchange with the outside air, but the new green building design goal should be to avoid most of the SBS problem sources in the first place, minimize the ongoing use of VOC cleaning compounds, and eliminate conditions that encourage allergenic, potentially-deadly mold growth.

Building occupants complain of symptoms such as:

* Headache
* Eye, nose, or throat irritation
* Dry cough; dry or itchy skin
* Dizziness and nausea
* Difficulty in concentrating
* Fatigue
* Sensitivity to odors
* Increased incidence of asthma attacks/appearance of asthma in non-asthmatics
* Personality changes such as rage/weeping/paranoia/depression
* Putative cases of bronchitis or pneumonia which do not respond to antibiotic treatment
* Symptoms resembling Irritable Bowel Syndrome (IBS)

This is a shortened list, as over 50 possible symptoms are known. It is possible for a dozen sick occupants to report a surprising array of individual symptoms which may be dismissed as unconnected. The key to discovery is the increased incidence of illnesses in general with onset or exacerbation within a fairly close time frame - usually within a period of weeks. Some sources will insist that for SBS to exist, these symptoms must disappear soon after the occupants go outside. However, this view discounts the lingering effects of various neurotoxins, which may not clear up when the occupant leaves the building. In particularly sensitive individuals, the potential for long-term health effects cannot be overlooked.

Not sure if this helps or not.. but some people's work environment makes them sick.

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Post by Guest » Thu Jan 24, 2008 11:05 am

Amanda.... NORMAL PEOPLE DO THAT TOO.

I went to bed at 8 pm last night. After napping on the couch between 4:30 pm and 8 pm.

Now, admittedly, I'm still weak from my recent infection. But I know I'm not alone when I hear the same story from my friend who is a non-cpapper, eats healthy, and is in every way NOT SICK. It's kind of a fact of life.

Don't stress over being tired. Find a work-around, and keep pursuing various tests.

The Gluten Free diet is very trendy right now - I've had several friends swear it's turned their life around. Can't hurt to try it for awhile.

Hugs,
Babs

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lvehko
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Post by lvehko » Thu Jan 24, 2008 12:22 pm

I saw a couple of posts about anti-depressants, but I'm not sure if anyone suggested you be evaluated for depression. There is a statistical link between depression and Apnea -- a lot of us tend to also suffer from depression, for some reason. I know your doc tried to give you anti-depressants, but did s/he actually *evaluate* you?

I will go ahead and be the whipping boy (girl) for antidepressants: they saved my life. If you do have depression, and Prozac didn't work for you, there are a host of others that may.

I know you've gotten a lot of suggestions and it probably seems overwhelming to have to check them ALL out now -- and honestly, I really hope you don't have depression -- but I think it would certainly be worth eliminating, based on what you're describing.

Take care, I'll be thinking of you.

M.

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lvehko
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Post by lvehko » Thu Jan 24, 2008 12:33 pm

Oh, yeah, one more thing:

I've been on CPAP exactly one year longer than you, and I still need nine hours of sleep a night. Some nights I need ten. Depending on how long your Apnea was untreated, you may still be paying back your sleep deficit. If you're sleeping eight hours or less every night, you may not be getting enough.

Also, I'm fortunate enough to be able to set my own schedule (I own my own business and work from home), and I've discovered that my natural circadian rhythm is to sleep from 3 a.m. to noon. With work, I can get by on an earlier schedule, but I usually feel tired if I do that, even if I get my nine-ten hours. When I follow the 3-noon schedule, I feel rested and productive. Some of us just aren't morning people.

M.


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Post by northernlights2 » Thu Jan 24, 2008 2:11 pm

Amandalee:

Sorry that you are experiencing so much tiredness. I'm one of the "success stories" with CPAP, and have been on it for almost 2 years now, and never felt better.
However, my wife has been experiencing a lot of daytime tiredness, and also had a sleep study done. They didn't find any sleep apnea, but they did discover that she has "idiopathic daytime sleepiness". The sleep doc prescribed her a medication called "Alertec" (think chemical name is Minidifal) and she has been much more alert and energetic since she started on it. I'm up in Canada, and not sure if they have it yet in U.S., but it's worth looking into.
Hope you feel better.

Steve.


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amandalee
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Post by amandalee » Thu Jan 24, 2008 2:15 pm

I definitely am not a morning person, that's for sure. I come in to work as late as I am allowed to: 9:30 am. I would love to be able to sleep until noon.

I have an appointment at the clinic here at work tomorrow. They haven't been all that helpful in the past, but hopefully I'll be able to talk them into doing the tests you have all suggested, or at the very least, giving me a referral to someone who CAN help me.

I don't think I have actually been evaluated for depression. Doctors have tried about 5 or 6 different anti-depressants on me (like some lab rat) and none of them helped.

Maybe I will give the gluten free diet a try and see if it helps. Is it difficult to find gluten-free food?

I do work under fluorescent lights, I split my time between a lab area and a cubicle in an office area... interesting info about SBS.

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