Little by little the time I can spend awake keeps decreasing
Posted , 3 users are following.
Hi there. I don't know really where to have a discussion about my issue and I feel stuck with my current sleep doctor. The history goes like this:
A few years ago a noticed that I needed to take naps more frequently. I didn't think much about until months past and it became mandatory for me to nap for 3 hrs each day. I had remember thinking about sleep apnea as I do snore and have never felt "refreshed" after sleeping. So I went to get a sleep study done.
Two tests later they find out that I have moderate sleep apnea. Great I thought I finally found the solution to my problem. In the meantime while waiting for a cpap machine I was now sleeping about 12 hrs a day and still needing to take naps.
Once I received the machine I used it every night without stop. I did this for 2 months and finally cracked due to no improvement in my fatigue and inability to stay awake. I told my dr this and she thought it was strange especially since she wirelessly receives info from my cpap and it's told her my incidents are almost none and the results look great. I told her I still feel the same.
So then we go on the journey of trying Nuvigil. I was on this for 3 weeks until I called begging to be taken off of it. It made me suicidal (one of the more severe side effects) so I could no longer bare it. As far as keeping me awake. It did a pretty mediocre job. I still felt exhausted but I no longer need 3 hr naps.
So now we've moved onto Ritalin. I'm not sure what to think of it only that Im glad with the combinations of the meds I already take that I haven't had any negative side effects. I'm on a very low dose so I can say that it is somewhat helpful in keeping me awake for longer stretches of time, but not my overall length of total awake time. For example, it might make it so that I am able to stay awake 5 hrs without a nap, but it does not extent my hrs of being awake during the day.
Now I'm at a loss. I'm still sleeping 10-13 hrs a day and now I am able to stay awake for only about 8hrs a day. I feel completely controlled by my need to sleep and it robs me of energy and my ability to function. Does anyone know what could be going on? Do I have some form of narcolepsy? I'm just getting scared thinking that some day all I'll be able to do is nothing but be asleep in a coma-like state.
0 likes, 2 replies
gingertabby inuratus
Posted
Sadly, I have no light to shine on your problem, but I wanted to let you know that you're not alone. I've been on my CPAP machine for about six years now and feel no different. Most of my life is spent sleeping. I have slowly dropped out of life, lost contact with friends, etc. My sleep specialist is useless. When I complain about still being exhausted, she just tells me it's probably my weight and I should go to the gym. This is to a disabled person who can't even cook for herself. So hopefully you will have better luck with your own specialist. I hope someone on here has some ideas for you.
Take care, Kat
lily65668 inuratus
Posted
So sorry to hear about this. It does sound as if it could be narcolepsy, or at least hypersomnia. I sympathise if it's the latter, as I suffer from it, like all my father's family. Both narcolepsy and hypersomnia tend to be hereditary, so I'm wondering whether anyone else in your family has them.
There are other tests they can do for this in a sleep lab, but I don't know whether your doctor will authorise them.
I don't want to be overly simplistic, but you have had full blood work done, haven't you? An underactive thyroid can cause extreme tiredness. Doctors fall into two schools on this one - as I found out to my cost 10 years ago.
The deal is that there are two blood indicators of hypothyroidism: thyroid hormones (T3 & T4) and thyroid stimulating hormone (TSH), which is secreted by the pituitary gland at the base of the brain. TSH stimulates the thyroid to produce adequate amounts of thyroid hormones. Some doctors believe a raised TSH is a sign of hypothyroidism, even in the presence of normal levels of T3&4, because it means the pituitary is having to work overtime to gun the thyroid into action. Others insist TSH levels are irrelevant, however high they are, and won't treat as long as T3&4 are normal.
My doctor of 10 years ago fell into the latter camp. Although my TSH levels were routinely 2-3 times over the maximum and I was sleepy all the time, she refused to act because my T3&4 were normal. Given that I fall asleep at the drop of a hat under normal circumstances, this was hard to cope with. It was only when my hair started falling out (another symptom of hypothyroidism) that I pushed for referral to an endocrinologist, who diagnosed the condition and put me on daily levo-thyroxine tablets for life. (This is the most common form of synthetic thyroid hormone.)
I've been on this for eight years now, and though it hasn't changed my underlying tendency to nod off easily, it's certainly relieved the overwhelming exhaustion I was feeling at the time.
To summarise: get full blood work done if you haven't already; and try and insist on testing for narcolepsy and hypersomnia, which is a different test from the one for sleep apnoea.