Going downhill, feeling lost

[SnoozyQ]

I don't know what to do with me. I don't know where to go from here to find improvement. My PCP doesn't know what to do, and Neuro wants to try Nuvigil instead of Provigil--when I asked the difference, he said Nuvigil lasts longer during the day. That's not what I need. Provigil has gone from helpful to ineffective in a month's time. I don't want to try Nuvigil if it can crap out on me in a month too. Not to mention, they are over $100 for me to find out they don't work.....

I have OSA and the CPAP is handling my apneas.We've established that.

But I am so very sick of being so damn tired.

The word tired just doesn't have enough emphasis to it......
See beat, beaten, bleary, burned-out (or burnt-out), bushed, dead, done, done in, drained, exhausted, fatigued, jaded, knackered [British], limp, logy (also loggy), played out, pooped [slang], prostrate, spent, tapped out, tired, tuckered (out), washed-out, wearied, wiped out, worn, worn-out,overfatigued, overtaxed, overworked; broken-down, run-down; debilitated, enervate, enervated, enfeebled, sapped, weakened; drowsy, heavy, sleepy; lethargic, sluggish.


I do alot of searching and reading online, trying to find points to investigate. And when I come across something that I think pertains to me,I don't know what to do with it or who on this planet could possibly HELP me. (No, I'm not thinking I have everything I find on the internet. Mostly I read about variations of things I indeed have, looking for unaddressed or overlooked points or a "lightbulb".)

I'm stuck. Thanks for 'listening'.

[KimberlyM]

I am so sorry you are feeling so poorly, SnoozyQ. Have you been tested for a vitamin B or D deficiency? How about thyroid?

[SleepingUgly]

Your apneas are addressed by CPAP. Can there be any residual SDB like RERAs? Have they done another sleep study with CPAP to verify that you don't have PLMD? Have you explored all the usual other things that can make one sleepy that they typically look for in blood tests?

How much Provigil were you on and how many times a day? It sounds like it helped initially but then what? Didn't help at all or just wore off too quickly?

[SnoozyQ]

Your apneas are addressed by CPAP. Can there be any residual SDB like RERAs? Have they done another sleep study with CPAP to verify that you don't have PLMD? Have you explored all the usual other things that can make one sleepy that they typically look for in blood tests?

How much Provigil were you on and how many times a day? It sounds like it helped initially but then what? Didn't help at all or just wore off too quickly?

No other studies. My anxiety would like to keep that as a last resort. I did have limb movements in the original sleep test, but no one mentioned it as a concern.
I have new blood panels to be done in March. Thyroid was normal a couple of months ago.

I'm on 400mg of Provigil per day. It helped to begin with, but I seem to have a tolerance now and it does nothing.

[SleepingUgly]

No other studies. My anxiety would like to keep that as a last resort. I did have limb movements in the original sleep test, but no one mentioned it as a concern.

If you had a significant number of limb movements in the original study, now that you are treated with CPAP, it might be worth exploring whether those are making you symptomatic.

I'm on 400mg of Provigil per day. It helped to begin with, but I seem to have a tolerance now and it does nothing.

400mg all at once or how are you taking it?

[SnoozyQ]

400 mg at once, in the morning.

My PLMS during the study was 5/hr.

[Pugsy]

I don't have a lot to offer but my sympathy. I do feel your pain. While I probably don't have the fatigue you describe, I can understand where you are coming from. I have pain that messes with me a lot. Affects the overall quality of my sleep.

Anyway, keep looking under rocks to see if you can isolate the culprit or culprits.

[sleepycarol]

Sorry you still haven't rested. For some it takes longer than others, not to downplay it in anyway. I think it, also, depends on other health factors. For me, I wanted that same rested feeling I had when I was alot younger. Unfortunately that didn't happen. Some days, I simply drag through the day wishing I could simply go to bed to sleep. In the past 6 months or so, I have found if I am at home I simple give in and take a nap -- something I never did before. That isn't always possible- - especially at work.

I think for myself, the tiredness is more related to other health issues than just the OSA. I had a number of leg movements during my initial sleep study, but like you they were never addressed fully. My PCP gave me samples of Requip to see if that would help. I never took them as I am already taking meds for other things. I think for me, not seeing a sleep doctor and having my PCP order the sleep study, may have been a disadvantage. In our area, there is only one sleep doctor and appointments are booked months out. I am too impatient to wait.

I have severe allergies, both airborne and food. What I eat, tends to impact how I feel. I have been to two different allergist, with the same results. Shots simply do not help and follow up testing confirms I fall into that group where they seem ineffective. I take allergy meds daily and have for years. Trying to control my diet is difficult due to the number of allergens I am allergic to -- legumes (including peanut butter -- and all beans that fall into this group), soy, wheat, milk protein, beef, chicken, pork, lemon/citrus fruits, coconut, almonds, tomatoes, potatoes, and several other foods. It can take up to three days for symptoms to show up on a particular food group and so at times I am unsure what food triggered a particular reaction.

I have lots of joint pain and back issues making sleep difficult many nights. I take aspirin or other over the counter meds routinely for this pain. This pain disturbs my overall sleep/rest and factors into my tiredness.

I have other health issues as well that probably factor into things -- along with my age.
It isn't any fun being tired all the time. It is a real drag and depressing (which in return doesn't help the cycle of things).

Good luck in finding the answers you need to make yourself more rested.

[Pugsy]

For me, I wanted that same rested feeling I had when I was alot younger. Unfortunately that didn't happen.

I hear you. I finally have accepted the fact that I was 58 years old and even without OSA I can't recapture youth.

I have lots of joint pain and back issues making sleep difficult many nights. I take aspirin or other over the counter meds routinely for this pain. This pain disturbs my overall sleep/rest and factors into my tiredness.

I have other health issues as well that probably factor into things -- along with my age.

I hear you on this also. My sleep doctor is fine with me taking a little RX at night to help get past some of the sleep interruptions caused by tossing and turning back pain. It has helped but I still have some issues. Finally got a new bed and that has helped even more. So while I haven't recaptured my youth, my old age is a bit more comfortable... Not perfect but again some additional improvement. Only had the new bed for couple of months now so hopefully when (and if) we ever have some warm weather, my arthritis will be even a little less painful. Not saying you need a new bed and not saying to take Rx. Only saying this is what I have tried. So not preaching and you may have already done this anyway.

Do I feel like running a marathon? Heck no but I can now get out of bed and not have to crawl to the pain pills. The new bed brought on this improvement. Small thing but every small victory is worth counting.

Keep up the work. It has taken me nearly 2 years to get to this point. Sorting and sorting of things to do to help me with the fatigue and pain. Fortunately I don't have the other things you mention. Seasonal allergies are minimal, etc.

Keep posting and venting as you need to. I can attest to the fact that it does help. Back when I first started here at this forum I used to write novels about my complaints. Verbalizing does help and sometimes we get little ideas to try that do help or at least give us an explanation as to "why" or "what".

Brenda

[jbn3boys]

I'm sorry this is so hard, SnoozyQ. Sometimes I feel the same way you do. I just want so badly to feel like I slept and was restored overnight...that restorative sleep everyone talks about. It is just so elusive. Just keep hanging in there. Focus on your successes! Remember, you worked every day last week! That was HUGE!! Little by little you ARE making progress!

[SleepingUgly]

400 mg at once, in the morning.

Does it work AT ALL and then wears off too soon, or it doesn't work at all anymore? How did it work before (e.g., worked well all day? worked well for 3-4 hours, but then wore off?)? How long have you been on it?

If it isn't working at all, what about taking a week's drug holiday from it and then going back on?

[SnoozyQ]

It no longer works at all.

I was originally on 100 mg....that did nothing. So for a week or so I began 200 mg and worked up to 400 mg (been there for the last month or so). It would last for about 4 hours and I could feel the afternoon slide.

When I take it now, it does nothing. I could go back to bed after taking it.

I may try the holiday, but I worry about starting a rollercoaster.....it's not a solid fix. I can't keep having these slumps....my job and my family/friends are going to dump me!

[jules]

what about diet? what kind of foods do you eat?

I have found I am very sensitive to MSG and probably have problems with corn (which is everywhere). I am discovering I can't even eat "healthy" things like prewashed salad mix and baby carrots and have to go back to more basic food and more time in the kitchen.

[SnoozyQ]

I'm all over the place with food.....today I had egg salad (with olive oil light mayo) and mixed fresh fruit for breakfast, a veggie sub for lunch....I don't know what's for dinner.
Diet sodas, or tea w/splenda.....2% milk when I have it.

I don't have the best or worst diet, but no drastic changes that I can note.

[SleepingUgly]

I may try the holiday, but I worry about starting a rollercoaster.....it's not a solid fix.

Provigil is a short-acting medication that doesn't have to build up in your system to be effective. If it's not working, don't take it. If you went off it for awhile and then went back on and it started working again, that might suggest that you had developed some kind of tolerance to it. In that case, you could see if routinely taking a day or two off a week from it would fend off tolerance.

I don't think there's any reason (other than the $ issue) not to try Nuvigil. It may work better for you than Provigil did. If the 150mg doesn't work, you could try the 250mg.