Dojiscalper's therapy thread

[dojiscalper]

My primary doctor, who isn't involved with my CPAP therapy is thinking I should try provigil to improve my daytime feeling bad. I'm not tired and think my CPAP treatment is working great after a year of use and my nightly AHI is averaging 1.5 or better. Sleeping 6-8 hours nightly and getting up at 6 am rested for the first time in my life every day.

Personally I don't think I'm experiencing a sleep deprivation issue now and am having other issues that we can go into in another thread if need be.

What are your thoughts?

[ChicagoGranny]

Personally I don't think I'm experiencing a sleep deprivation issue now and am having other issues that we can go into in another thread if need be.

You need to go into the other issues here in this thread. The mind, body, and life in general are a whole. Anything that affects one part can affect many other parts.

(The major problem with Provigil is that it does not come with an "off" switch.)

[Julie]

Don't fix what's not broken!

[ChicagoGranny]

Don't fix what's not broken!

my daytime feeling bad

[Julie]

I would stick to this thread even if the emphasis changes... it helps so much for people to have the whole story and help you meaningfully.

You should possibly ask for a referral to a therapist, psychiatrist, psychologist if you feel the need... can't hurt anyhow, but if you think your problems are physical and your doctor's not listening (?) consider another doctor who'll give you up to date labwork and a thorough exam. Not everything's about OSA of course, even if we'd like to think so. And I don't think getting on the road with e.g. Provigil is the answer... not yet anyhow, as it could even complicate your therapy rather than anything now.

[dojiscalper]

I'm inclined to agree with you all so far and thanks so much for your time and help this forum is awesome as a support group and no one can understand what we go through to get apnea's under control like this forum can.

To explain my symptoms is gonna be long and I'm going to go into detail because I have the time and I need the help, so you've been warned.

It took me over a year, but I did find a helpful doctor who's run every test from the brain out the other end and everything is coming back as normal, including MRI's, gastro, heart, the works. I got a CT coming up in a week or two. A nerve conduction study has shown some unexplained weakness in my leg motor neurons, the neurosurgeon didn't see a good reason for it and suggested exercise.

I'm 40 and like so many I was in sleep apnea denial my whole life. Looking back I was always the "not morning person" type and I've always just got along fine living my life in the late night hours. After about 6-7PM every day I would start getting energy and by 10PM I'd be totally buzzing with energy and if I wanted I could easily just stay up until 3-4AM sleep a couple hours and be mostly fine and go about my life like that. Most of the time I would force myself to go to bed at about 12:00AM just because people need to sleep It finally started to get to me though after about 30-35 years so I got a sleep study which showed severe sleep apnea, however me being naturally suspicious and a cheap skate I just kept on going.

Except for being extremely hard to wake up and very hard to get doing well in the AM hours I've always been a very ambitious person with huge goals, dreams, and I have the self starter skills to boot. I'll work my butt off on anything I want to do and run circles around anyone else in my past jobs and my employers loved it and I loved it, it was life as I knew it.


I do have Epstein-Barr virus which flares up and makes me have mononucleosis symptoms if I over exert myself and can cause me to catch colds, etc easily, but I've also dealt with that my whole life as well and its not my issue though it doesn't help.

Now on to now:

I got another sleep study over a year ago and thought I would start to get myself help. That study also showed severe sleep apnea and I went through all the hoops and got a machine. With the help of this forum I got used to using it, got a better machine and am now doing what I think is very well in the apnea department, as I mentioned in the first post I sleep 7 hours per night with an AHI of about 1.5 and I now wake up at 6am very easily instead of sleeping past noon anytime I can. When I used to go on business trips I've been known to sleep from Friday after work to Sunday evening.

Now with those numbers and feeling rested, I'm having strange symptoms that I can't really describe and it seems to get bad when I eat. Doesn't really matter what I eat and I'll be going along mostly fine and get a drink of water and then BAM, I start feeling bad like something is wrong. Sorry its hard even for me to sit here and type it, but its just hard to explain. For physical symptoms I do notice my vision will get blurred, and I can have very sharp shooting pains through my toes and fingers. I've also lost the ability to walk fast, I used to be the fast walker in the group and now my slow walking wife has to be told to slow down. I'm not out of breath I simply cannot walk fast. It seems my legs don't like to bend over my ankles quick enough. Also leg weakness now is amazing and I find it very hard to climb stairs especially in the morning. Before all this I would have ran up stairs and wouldn't have thought anything of it.

At the same time I started a small company and luckily its taken very little effort for me to replace my old employed income. However I cannot work on this business like I should be or want to be due to just feeling bad and possibly in a depressive cycle from it all so now instead of doing anything I should do or want to do which to me was a huge part of my life before, I am now almost on bed rest with 1 to 5 hour trips out to do some work daily and there is nothing I hate more than watching TV and wasting time I could be spending on my interests.

I think this is causing depression, anxiety, irritability and I googled this one (feelings of impending doom) seem to come up. Luckily the doom thing hasn't happen for a few months, but it was odd especially for me, I'm the guy who you could put in a burning building and I would calmly make sure everyone else is gonna be safe and probably try to figure a way to fix the situation.

[Julie]

Has your blood sugar been tested for e.g. diabetes?

[dojiscalper]

yes I've had 3 primary doctors, and specialist in several fields involved over the past year all doing their own complete labs and probing me in their respective ways.
all things normal or high normal so far and nothing concerning enough to be on any medications for anything other than GERD.

Only thing that really stands out to me is anemia which all the doctors have so far been ignoring. I'm concerned about pernicious anemia as being a possibility due to taking GERD drugs that will cause B12 malabsorbtion. I had a quack give me a B12 shot then draw labs for B12 which showed off the scale (no kidding). Now I've hopefully gotten that out of my system and got new labs today after a few months so we will see how that goes in a few days.

[yrnkrn]

Rheumatology is the home for many mysterious hard-to-diagnose problems. Had you seen a rheumatologist?

[Cpapian]

What are your objections to trying Provigil? Is it an objection to drugs in general or is it specific to this drug?

Based on what I read in Wikipedia, it seems to be a drug you can take for a short period of time and then discontinue. So you could take it for 3 days to see if it helps. If it does, then you have information. If it doesn't, then again, you have information. And your doctor will look elsewhere for solutions.

The other avenue I have for enquiries, you mention your problems arise around eating. What type of GERD do you have? Have you had an Gastroscopy? What were the findings? What medication are you taking for it? PPIs? How much and how often? Do you take a morning pill 20 to 40 minutes before eating? Do you feel it is well controlled? Since going on XPAP do you feel your condition has improved? What does your diet consist of? Processed food versus less processed, vegetables, fibre, etc?

As a final thought, you mention you started your own business recently. Did these problems you are experiencing occur before or after. Starting a home business can remove the social aspects of working, all the myriad of everyday little nothing conversations and then there is no no boss to push you to perform. Second is probably a lot less walking with a home based business. No walking to and from the car, around the office, even the trips to the men's room can be a distance that can add up. When you think of it, this is a major lifestyle change are there any parts of it that you are missing?

[ChicagoGranny]

I would stick to this thread even if the emphasis changes... it helps so much for people to have the whole story and help you meaningfully.

+1

And, change the subject line to "Dojiscalper Therapy Thread".

[palerider]

I would stick to this thread even if the emphasis changes... it helps so much for people to have the whole story and help you meaningfully.

+1

And, change the subject line to "Dojiscalper Therapy Thread".

Change it in the *first* message.

[dojiscalper]

What are your objections to trying Provigil? Is it an objection to drugs in general or is it specific to this drug?

Based on what I read in Wikipedia, it seems to be a drug you can take for a short period of time and then discontinue. So you could take it for 3 days to see if it helps. If it does, then you have information. If it doesn't, then again, you have information. And your doctor will look elsewhere for solutions.

My own googling suggests that it won't be effective very long, but as you say it might provide some insight and I think the doctor is hoping I report back that it helped out 100% which to him would mean I'm simply tired. I'll likely give it a try.

The other avenue I have for enquiries, you mention your problems arise around eating. What type of GERD do you have? Have you had an Gastroscopy? What were the findings? What medication are you taking for it? PPIs? How much and how often? Do you take a morning pill 20 to 40 minutes before eating? Do you feel it is well controlled? Since going on XPAP do you feel your condition has improved? What does your diet consist of? Processed food versus less processed, vegetables, fibre, etc?

I never heard anything other than GERD from any doctor and I had been taking Prilosec OTC for many years for nightly regurgitation problems prior to my XPAP therapy. They gave me a prescription that I take before bed though lately I've been trying to reduce the frequency of its use. I do think the XPAP has made the GERD better. My diet is trash LOL and always has been. Yes I had a colonoscopy and endoscopy both came back as normal.

As a final thought, you mention you started your own business recently. Did these problems you are experiencing occur before or after. Starting a home business can remove the social aspects of working, all the myriad of everyday little nothing conversations and then there is no no boss to push you to perform. Second is probably a lot less walking with a home based business. No walking to and from the car, around the office, even the trips to the men's room can be a distance that can add up. When you think of it, this is a major lifestyle change are there any parts of it that you are missing?

I started the business about the same time and I know that has taken its toll due to the extreme stresses of getting that going, however and very luckily I'm an expert in my field with many years of experience so I was able to fairly quickly make it successful in that I make money to live on. As for the amount of physical activity and socialization, those have both increased on the whole. My days consist of field service IT work so I find a job, run out for a few hours and do that job and during that time I can be doing anything from repairing a printer to running some cabling. My old career was almost entirely made of sitting in my car, napping between service calls and driving around my area. Not much socialization for over 20 years so that hasn't really changed except that now I talk to more project managers, dispatchers and back end engineers, but its still very limited.

[dojiscalper]

Rheumatology is the home for many mysterious hard-to-diagnose problems. Had you seen a rheumatologist?

I have finally found a primary care doctor who scheduled me with a lot of the experts. I haven't been to a rheumatologist as of yet.

[dojiscalper]

I'm just not sure where to go with this. Maybe I had a lot of these symptoms before XPAP, but didn't notice due to being "normal" extremely tired and just living like I always have without a clue except that I would drive off the road or fall asleep at stop lights from time to time?

The big issue is that before XPAP I was extremely tired in the mornings and even very dangerous to myself and others on the road. This was normal to me and no other real symptoms, I'd stay up to midnight routinely and enjoyed the evenings and my hobbies. Now that I am treating apnea I'm doing excellent at sleeping 7 hours and waking up on schedule without an alarm clock however I'm feeling malaise severe enough to be completely miserable and unable to do anything that I did before.

I don't think the therapy is causing this.