Severe exhaustion scares me !! Need hope please

[Spirit]

is the problem traditional allergies or are you chemically sensitive too? MCS is nasty to deal with and can leave you in quite a chaotic mess -

allergy meds are not the answer if you have MCS - in fact probably not many meds are good for the MCS patient

Hi Jules,
The problem is both. Allergist was going to test me, concerning medication sensitivity. Cause my body reacts to everything, antibiotics, allergy meds, sedatives, etc.... Even Ibuprofen can send me to the ER.

I have an enlarged thyroid, was given synthroid to reduce swelling, I ended up in the ER, hardly breathing. I spent 5 day's in a hospital, after taking a hctz (water pill), to reduce foot swelling.

Sleep doc believes Klonpin, contributed and made my Apnea worse (long story),.

But I'll do some research on mcs, thanks for your help.

[jules]

any benzo and most of the z drugs (sleepers) can make apnea worse

[Spirit]

Sprite,

I wish you luck on your long journey. I'm a new user myself and I can understand some of the issues you're facing. I've got depression issues myself as well. Mostly because I've not seen my wife in over 18 months. Been talking with a counsler here on base. It has helped a bit. I think that if my 'boss' was to go away, it would take care of the rest of the stress I'm having, but I don't think that the military would be too happy with me dealing with things in the old school way or borrowing a trick or two from Mr. Copperfield.

Hi DRJ,
Thanks. Wish you best of luck through your journey. I'm sorry to read, you've seperated from wife, hope the two of you reunite soon. Ah, military soldier. Thanks for serving, and support to our nation. I served in the Army for 3 years, now the VA takes cares of me, they are slow as he!!, turtle crawl is a compliment but have taken good care of me.

Hope you find stability in the service, know how stressful it can be. Apnea treatments work well for many, but for some of us, it's not a cake walk, but recovery is most important.

Sure could use Copperfield right now, to make Apnea disappear, now that would be magic

[kteague]

Your description of your severe exhaustion sounds like a page out of my life a few years ago. For a while I thought my life was slipping away, as I didn't see how anyone could feel so close to death yet continue in the land of the living - not that many would consider my existence living.

Two weeks into treatment is waaaaaaaaaay too soon to decide it's not helping. You're making a pot of homemade stew here, not heating up a can of soup. I found my way here after quitting cpap. I'd lost my career, and too much of my health. When I resumed cpap use with new knowledge (and data) and tweaked my treatment, I trusted those here who advised me to be diligent about my treatment and persevere with no "out" options because it was the best thing for me. I couldn't feel it or see it, but I already knew this was my best if not only hope. While other sleep disorders (RLS & PLMD) still give me grief, my cpap treatment has given me so much of my life back.

Do those things you know are right to do, believing you will one day reap the rewards. Get plenty of sleep (extra even) and be very kind to yourself while you heal from years of living in trauma. And use your cpap! It can never help you if you don't use it and use it religiously. In other words, fake it till you make it.

You said narcolepsy was ruled out. Funny thing about ruling out some things - there's a difference between proving one doesn't have a disorder and failing to prove one does. If after a few months of diligent cpap use you still have excessive daytime sleepiness, that subject may need revisited. Oh, did your studies mention limb movements?
Kathy

[Spirit]

any benzo and most of the z drugs (sleepers) can make apnea worse

Hi Jules,
Thanks for info. Yup ! My sleep doc said, my apnea developed over the past few years, when I was tested 3 years ago, I should have been given a cpap not a benzo (Klonopin),. in 96 i stopped breathing 7 times per hour, now 33 times per hour. He said, that was the worst thing, they could have done to me. There's a possiblity Klonopin may have caused more damage then provide proper treatment for sleep. But he said, my symptoms are caused by a combination of both Klonopin and apnea.

So right now, I have no idea how much damage Klonopin has done, only time will tell.

[jules]

yes hard to know how much damage was done - I am also the victim of improper apnea treatment so am well aware that can happen

[Muse-Inc]

...I'm just so impatient right now, after waiting nearly 3 years, treatment seems like a lifetime, although it's only been 2 weeks.

Took me a month to go from severe exhaustion to plain ole tired. Several more months before the cloud began to lift and I could smile again. Somewhere along the line -- before apnea diagnosis, I became resigned to dieing soon as my doc was clueless as to why I felt so bad; I thought my exercise-induced asthma had possibly returned and my allergies were outta control again...former primary wasn't helpful.

After I knew I had apnea and that I desaturated, I knew my brain needed help to recover. I quit expecting so much of myself as I knew I was doing the best I could, I learned to say "no" to everyone because I needed to come first as I'd never done in the past. I concentrated on getting at least 8 hrs of sleep each night, stopped going out in the evenings on work nights, slept in on the weekends. I boosted nutrition, changed eating, changed behaviors, developed good sleep hygiene. I knew my mood was seriously affected and I also knew that chocolate has a chemical that's a mood upper, so I started drinking hot cocoa that I made: 12-14 ozs really hot water, 1/8 cup 100% grd unsweetened Ghirardelli (if you're gonna do chocolate, buy the best!) cocoa, 1 pkg Spenda -- MIX WELL, then add 1/8 c heavy cream. I also increased omega 3 EFAs (Coromega fish oil gels), DHA for their powerful effects on the brain and inflammation. I take a Quecetin+vitamin C combo for the systemic inflammation caused by apnea (my allergies were also triggered big time) and also eat fresh ginger, onions, garlic, scallions, leeks for the same reason (as much curry and tumeric as I can figure out how to add to my food too). I dropped all use of Equal (aspartamine) (no more diet sodas) as it's an excitotoxin causing brain cells to die...I need all I have. I eat fresh food over processed, protein and fat heavy, avoid refined carbs, and stick to low-carb veggies, berries, beans, and the occasional 6-8 carb gms of dark chocolate bars as part of a meal. I eat lots of eggs as they too are healthy for the brain and are a great source of sulfur.

Knowing the journey back was gonna be long and knowing I had little patience, I learned to be grateful to every small sign I was improving like being less #itchy at work, waking up feeling OK instead of half dead (oh, how real that was), my sense of humor started to return, vivid dreaming began, instead of waking up with every slight disturbance after the mask went on I started sleeping deeply as my brain wasn't afraid to let me sleep. I was a mess pre-CPAP...I am so much improved from who I used to be. Now I hafta admit, I had one absolutely fabulous immediate effect starting the first night of CPAP...are ya ready?... no more nightime peeing!!! the 8-10 trips a night stopped and have never returned! I clung to this when it didn't seem as if anything else was improving.

You can do this too!

[ozij]

I do mouth tape, and got my leaks down between 0.0 - .36, I have another appt for mask change Sept 10, possibly to ff,. My data is looking fantastic, buy my over all health is still poor.

Since you're using a Resmed mask and a Remed machine, your leak should be consistently 0.0. Every night. By the time your leak is 0.4 the machine can't help you.

Check your hose routing.



O.

[Spirit]

Your description of your severe exhaustion sounds like a page out of my life a few years ago. For a while I thought my life was slipping away, as I didn't see how anyone could feel so close to death yet continue in the land of the living - not that many would consider my existence living.

Hi Kathy,
Thanks for help. Exactly how I feel now, just existing, wondered how many times, I had near death experience, from exhaustion. I tell people, I feel like I'm in a coma, but awake.

Two weeks into treatment is waaaaaaaaaay too soon to decide it's not helping. You're making a pot of homemade stew here, not heating up a can of soup.

Love your analogy

I found my way here after quitting cpap. I'd lost my career, and too much of my health. When I resumed cpap use with new knowledge (and data) and tweaked my treatment, I trusted those here who advised me to be diligent about my treatment and persevere with no "out" options because it was the best thing for me. I couldn't feel it or see it, but I already knew this was my best if not only hope. While other sleep disorders (RLS & PLMD) still give me grief, my cpap treatment has given me so much of my life back.

Sorry to read, you've had a difficult experience. I agree, lots of wonderful people at the forum, I've learned alot, this forum is the reason, I continue pushing forward. I am a perfectionist with a very impatient personality, and expect immediate results, something I need to work on. I admire the patience of so many people, I read about at the forums.

Thanks for sharing, there is hope !!!! I believe that's the reason, I get frustrated & sad, I can't feel or see improvements, like other treatments I have experienced. Guess, I need to read more about Apnea, to further understand what I'm challanged with. I thought, okay now I'm able to breathe & sleep, I should be fine, boy was I wrong !!

Do those things you know are right to do, believing you will one day reap the rewards. Get plenty of sleep (extra even) and be very kind to yourself while you heal from years of living in trauma. And use your cpap! It can never help you if you don't use it and use it religiously. In other words, fake it till you make it.

Thanks for words of encouragement, inspiration & hope. Funny thing is, I love using my cpap, just to tired to put it on everynight.

You said narcolepsy was ruled out. Funny thing about ruling out some things - there's a difference between proving one doesn't have a disorder and failing to prove one does. If after a few months of diligent cpap use you still have excessive daytime sleepiness, that subject may need revisited. Oh, did your studies mention limb movements?

No limb movement. Sleep doc was suspicious of narcolepsy, from my exhaustion description, I was scheduled for 24 hour sleep study, and the tech said, we discovered the problem, and sent me home that morning. Good luck to you, and many thanks.

[Spirit]

yes hard to know how much damage was done - I am also the victim of improper apnea treatment so am well aware that can happen

Sorry to read, you were a victim as well. Good luck on apnea treatments, wishing you recovery back to full health. Thanks for all your help. Some doctors are just idiots

[Spirit]

Thanks to everyone, for all thier support I feel so much better. Now, I can put my mind at ease. Hope tomorrow is a better day. Sweet dreams everyone. You all are so wonderful.

[BlackSpinner]

According to my sleep doc it can take up to a month before your brain will adapt to the fact that you don't stop breathing and allow you deep relaxing sleep and REM sleep. It has worked hard to keep you alive all this time, it just doesn't trust your body yet to keep on breathing.
It is like a dog that has been abused - you need to regain its trust by being consistent and loving.
Keep up using the cpap so it will re-learn to trust you.

[stanps]

Spirit,

My .02 cents based on my experience trying to understand the relation between sleep apnea and depression: It seems that you are probably depressed because of your circumstances. Anyone would be. Whether your symptoms are caused by depression of vice versa may be hard to nail down. Getting treated for depression, whatever the cause, my be at lease part of the solution.

Best of luck to you.

[ZuniWolf]

Spirit,

I wish I could give you hope, but I *can* tell you that you are not alone. I've been rasslin' severe fatigue for decades. I came into this forum in Dec '06 (gads, has it been that long???) I eventually dropped out because the "magical cure" of CPAP didn't work for me originally after over a year.

I am fortunate enough that I can take pharmaceuticals ( antidepressants, Clonazepam, etc), but they haven't helped the chronic fatigue each morning. The sleep doctors call it "ideopathic hypersomnia," which meant that a clinically great night's sleep didn't help me diddly squat and they don't know why! Stimulants helps for decades, but since I developed a heart arrythmia, the docs wont give them to me anymore.

I did not get the software for my xPap, but the last sleep study showed NO apneas at 14cfm. My heart rate was still 120! I do think that some of this is food-related. (OK, so I had a Pizza Hut that night before the test. <g>)

I understand only too well how difficult it is to do do food elimination/dietary studies and changes when you can barely ( or can't at all) get out of bed in the mornings. Something that is simple and may work well on foods is muscle testing, or applied kinesiology. You can easily do it in an afternoon with just a friend to help. Look it up.... You don't have to pay a naturopath or anyone else who wants your money to help you. It will tell you right away what you should be ingesting and what you shouldn't. It basically involves holding the suspect substance in your right hand and seeing if your friend can easily push your extended left arm down.

Yet it can be really hard not to ingest the things that your body doesn't want. For me, it's bread. I don't know yet if it is just the gluten or the wheat. I haven't had the energy to do the discernment. <g> So many of the offending substances are foods we rely on daily that it is really hard to give them up or work around them.

I have started using my xPAP again this summer partly because I am house-sitting. There is electrical power from the grid here, so I don't have to worry about my RV batteries running down. (I live full-time in a travel trailer, mostly off the grid.) My xPAP will work on 12v battery power, but not at my needed cfm and it won't run the humidifier.) It will run OK with an inverter to 120 volts, but still drains the batteries a lot each night. In the past, I haven't had enough solar power to replace that. I got another panel so it may work better now.)

Since my sleep doctor-titrated 14 cfm doesn't seem to help, I will try slowly bumping it up and see how I feel. My Flexi-fit mask works better than my original mask. The Flexifit covers my mouth and chin, not like the old one that just covered my nose and mouth. All I had to to was relax my jaw and my mouth popped down out of the mask. I really never had a probem with wearing a true full face mask. I have decided that even if it doesn't help the chronic fatigue, there are a host of other medical problems that xPAP therapy will help in the long run.

I am somewhat limited on the equipment I can use, because I have to get it from the Veteran's Administration medical system. Yet I am am extremely grateful that I don't have to pay the $$$ that most folks have to for their machines.

This was a ramble, but I hope it helps somehow.

Jayne

[SaltLakeJan]

Sprit wrote:

i get tired so easily, alway's feel sleepy, but can never sleep, i try to take naps, but sleep never comes.

I've been down that long road of exhaustion. DH & I were dxed with Hepatitis, (drank contaminated water at a Resort)
Took five long years for us to regain our strength. Three little kids complicated our recovery. When I finally got back on my feet, I developed Fibromyalgia, filled with fatigue, muscle pain and the endless symptoms that go with FMS, which lasted for years. I include this information only to let you know, I understand the kind of exhaustion you have.

The suggestions you have had, contain good possibilities for your doctor to examine. Several things in your post stood out to me. First you are too tired to eat, I think you said you don't like red meat. and you cannot sleep.

We all need protein (animal or plant) for our body to build and repair tissue, but protein isn't stored in the body. We don't need large amounts, but it is essential for good health. And since you are too tired to eat well, I also wondered if you could be anemic? When a person is anemic, they usually exibit tiredness, fatigue, & shortness of breath.

I quoted you at the beginning of this post saying that sleep never comes to you. lack of sleep, also creates the fatigue, exhaustion and brain fog that seems to plague you.

When you see your doc, take a list of all we have listed here, and see if he thinks any of our suggestions may apply to your exhaustion. Do take the best care of yourself that you can. I fully understand how fatigue ravages the body. I hope you get answers soon.

Jan