I can so relate to your situation - people telling you that you're either drug-seeking or a hypochondriac when nothing is further from the truth. Now that I've gotten onto medications and health routines that help, I'm on less medications than I've been on for years. If I were just a junkie looking for pain and fatiuge meds, that wouldn't be true. In fact, I found that narcotic pain meds were less effective than tramadol (which has less abuse and euphoria potential - unless a person were to drastically overdose. If I were drug-seeking for a high, it wouldn't make sense that I was having the most success with a drug with less ability to create a high.)
If you were drug-seeking for a stimulant - Provigil and Nuvigil would be a terrific disappointment. For most people, they don't even cause jitters, because it's such a subtle drug. Caffeine provides more of a "buzz" in that regard.
A doctor that isn't willing to do any pre-authorizations is a crappy doctor in my opinion. What that says is they do not care whether or not their patients can afford the medications they prescribe. My pcp (primary care physician) not only does pre-authorizations, he gives me samples of anything he has, because he knows my husband and I are on SSDI and a limited income. He even spontaneously (I didn't have to ask) realized that prescription niacin would be cheaper for me than the OTC vitamin - and gave me a prescription at my last appointment. He actually has the Walmart/Sams $4 list in his blackberry, so when he prescribes a drug for me - he checks that list first to see if there's something on that list he can prescribe.
As to the Provigil and Nuvigil - they are among the safest prescription alertness drugs on. There's a low addiction/abuse potential - because they do not cause a "high" like other stimulants (it feels very natural. I would describe it as a more subtle "normal" experience for me than caffeinated beverages). I feel awake and have energy, without feeling hyper, or jittery. Prednisone and caffeine have a much more noticeable stimulant effect than provigil.
My neurologist says that in some ways, the drug is actually safer than cafeine. Now, I know he's biased, both because his brother had narcolepsy (died in a motorcycle accident) and because I gather that he has used it himself (I may be misremembering, but I think he said he uses it for long car trips - with his brother dying in a vehicle accident, I can see why he would be concerned with staying awake at the wheel).
Because this is a drug that neurologists probably understand the best (and rheumatologists - because it's so often prescribed for autoimmune and rheumatoid illnesses), I would recommend you see either (I have a bias towards neurologists, because my best doctor is a neurologist. He's helped more than any other doctor I've ever had for my fibromyalgia - and I'm not saying that just because he was willing to prescribe a drug I found useful. Some of his best advice has been behavioral (learning to recognize the difference between a flare I can work through, and a flare that requires rest). My favorite thing about him is the reassurance that I wasn't crazy, that my symptoms were real and had a cause (and he explained it, so I'd understand why it was going on, and what I could do about it).
If your insurance requires you to get a referral from your primary doctor and she isn't willing to make those referrals - just as she isn't willing to make prior authorizations - both are good reasons to find another doctor. I hope that your insurance allows you to do that (I abhor plans that require you to see doctors from a very short list. I once worked for a company that gave us a choice of several doctors - but really it was a choice of only one or two - because the others weren't accepting new patients - some choice).
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Originally Posted by beerab
I spent most of the weekend in a fog- no matter how much sleep I get it's not enough and I still feel tired after a few hours.
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I really think that there's more going on here than sleep apnea. Do you know if your sleep study included an EEG, also did you have the seperate EEG to test for narcolepsy/epilepsy (you have to stay up all night and get tested in the morning).
I'm not trying to be an arm-chair diagnostitian, but I would suspect CFIDS, fibromyalgia, or a related condition (which is why I ask if your sleep study revealed any sleep stage abnormalitites).
Brain fog was my severest symptom. It wasn't the pain of fibromyalgia that forced me to stop working, it was the fatigue (to some degree, you can work with pain, even intense pain - but there isn't a job on the planet that doesn't require you to be awake during at least most of your work hours).
I was sleeping 12 to 16 hours (up to 20 on the weekends - and I mean asleep, unconscious - not just lying in bed relaxing) and still not feel rested. And it's no wonder - without restorative sleep lab animals eventually die - of immune disfunction, that I've been diagnosed with an autoimmune connective tissue disorder isn't really very surprising considering how little time I spend in REM sleep according to my sleep studies.
I would misplace things in ridiculous locations (fish sticks in the cupboard, pens and pencils and the tv remote in the freezer), forget I had food cooking on the stove, not remember conversations I'd had with my husband only five minutes before (I really began to think he was lying about these conversations and was trying to drive me insane. I became rather paranoid - even when I believed him, I was afraid (and he was to) to be left in the house alone for fear I'd start a fire or something.
My apnea was severe (I was experiencing 90 apnea occurences per hour), and the CPAP helped tremendously, but not entirely (which indicated that I had more than just apnea going on - and you may too). Now that I no longer have apnea, I still have bouts of very severe fatigue.
Severe fatigue is not a trivial symptom - it's a sign of something severely out of wack. I was tested for all sorts of things before I was diagnosed with fibromyalgia - Lyme desease, narcolepsy, epilepsy, hypothyroid, MS, lupus...
If pain hadn't been one of my symptoms, I would have been diagnosed with CFIDS (chronic fatigue and immune dysfunction syndrome). Some doctors diagnose chronic fatigue and fibromyalgia as two separate disorders - but many consider them the same disorder - as have all my doctors (in the midwest) - so fibromyalgia is considered CFIDS with the added symptom of pain.
Many doctors still believe CFIDS and Fibromyalgia are psychosomatic or imagined - but they conveniently ignore the symptoms that are inconsistent with their theory (how does an imaginary illness cause a fever? - or bumps under the skin that a doctor can feel - or rashes and inflamed skin)?
Sorry, I'm starting to ramble and rant. It's just such a sore subject with me, because I spent ten years with symptoms I didn't have to - because my doctors and I were opposed to medicating pain and fatigue. If I had treated my pain and fatigue when they first appeared, I probably would still be working. This is the experience of many people with fibro and CFIDS, we're often able to stabilize and improve our symptoms, but only to a degree. The earlier the symptoms are treated, the less disabling they tend to be. I just want you to learn from my mistake and don't dismiss fatigue as "normal." A little fatigue IS normal, but fatigue that interferes with your physical and mental functioning.
My eating this weekend wasn't too great but I could have done worse.
