Posted by permagrin on January 24, 2003 at 18:35:51:

In Reply to: Re: Interesting chat w/sleep lab people posted by GBoogie on January 24, 2003 at 17:17:51:

GBoogie, I am so sorry to hear of your mom's problems. I almost think it's more heartbreaking to see someone you love going through these things than if it were happening to ourselves. She is so very fortunate to have a son who cares as much as you do and is so willing to try to help. Bless your heart. I also completely understand that feeling of being so determined to help and not stopping no matter what. Then there is the MISdiagnosis issue!!!! Mike has been subjected to all sorts of misdiagnoses along the way, some absolutely infuriating, and some so insulting that he still has not recovered emotionally from it. It's horrifying the things some doctors will pass a problem off to if they can't figure it out. Do not get me started with this subject. Heh. Consider yourself fairly warned. :) Teehee.

Hope you're sitting down... Mike just turned 39 in November. His problems began four or five years ago with waking balance problems and an occasional shakiness. It's gotten progressively worse, but with many ups and downs.

This morning he awoke as lucid as I am. (Okay, so maybe that's not saying much. LOL!) His whole day has been wonderful (mentally/emotionally) and I know this is because of his good sleep for what part of the night he did sleep last night. The correlation is undeniable and has been since the very start of CPAP treatment, even when it wasn't optimal. (This brings me to an interesting point about my taking responsibility as his medical DPOA - I am able to talk with him when he is lucid and discuss all sorts of things with him. Normally, when we have to see a doctor, or when he is hospitalized, he is either so exhausted or sleep-deprived, he is in no shape at all to deal with doctors. This is why I felt it so important to advocate for him, as I do know his feelings and desires about his medical situation.) His good days occur within a night or two of even halfway decent hours of good sleep. His bad days are instantaneously related to a bad sleep, and I do see downturns even if he just naps without CPAP. I agree that a brain that has been injured, or maybe even sensitized by O2 desats and deprivation appears to be more sensitive to further insult. I think I would agree with that assessment 100 percent.

I think last night's episode was simply a matter of him having achieved a deep state of sleep and not fully waking up. He was definitely sleeping very well with CPAP right up until he 'woke up' and the whole thing started.

Following along with your post, Mike does not have any detected central apneas - all are obstructive, which is why I think this guy was so convinced that surgery may be an effective option for Mike. I'm not at all nuts about the idea of him going through ANY surgery, but he is willing to follow up and undergo these surgical options that would open his airway up, and so I guess I would have to support that. I haven't even discussed a trach with him, but I think he is aware it is one potential treatment. I don't think he would be too psyched about it, but I suspect that if he thought it could offer him some hope of returning to some kind of normal life, he would probably decide it's worth it. He has a 9-year-old daughter who is the world to him and I think he would do anything to be a more active dad.

I'm curious about 5-htp, having seen mention of it at NIH Library of Medicine and a couple of other journals. (I read regularly at the NIHLibrary site and get Medscape Review every week. I've learned more in the past year about every facet of neurological problems than I can even remember any more.) This is another med/supplement I was considering and am now more curious than ever to learn more about it. As far as the association between OSA and dementia goes, I would have believed that in a heartbeat even if I didn't read so much because it's that obvious with Mike. Early on in the 'game', so to speak, I was nagging his neurologist to do SOMETHING because I could see very plainly that his brain just wasn't getting oxygen and that as he woke up more during the day, his cognitive function improved. It took me a little while longer to figure out what was preventing his brain from getting oxygen. The neurologist stubbornly stuck to the idea that 'somewhere along the line', Mike's brain had suffered some hypoxic insult and that his symptoms were plainly the result of that. We scoured his records of a surgery he had had and any other records we could gather to try to find evidence of an hypoxic event, but there was simply nothing there, and we were left to believe that either some doctor was lying or some hospital had, or he had had some traumatic event that nobody had seen. All in all, it was just a little too weird to believe. He kept saying, "This is not the sort of thing anyone misses. He would have had to have been BLUE to cause this kind of damage!" Well.... evidently it was not a single event - it has been an ongoing issue. There's no way to know right now what is recoverable for him and what is permanent, thus we will continue, probably forever, to improve on what we're doing and try to return him to some kind of normal function.

Epilepsy - Mike's sister, he tells me, is epileptic, but it's not a subject I have been able to glean much information from the family about, so I don't really know what the story is there. Regardless, epilepsy is one of the things they've tried to eliminate from the list of possibilities with Mike. He has gone through several EEGs and Evoked Response tests, with flashing lights and all, that supposedly would provoke abnormal EEG activity, but have found no evidence at all that there is any seizure activity. Along with all of that, he has had more MRIs and CTs than anyone I know has had in a lifetime, and all are completely clean and negative for any abnormalities. His symptoms are currently one of the greatest medical mysteries in our city of Ft. Worth, TX.

This is so long and I coud continue for many pages, but rather than do that, I will sign off for now. Consider it done that I will keep your mom in my prayers, as well as a prayer that your invention works and secures you and she the help she needs. I am so in awe of your dedication to her and as I read your post, I found myself nodding in complete empathy with your feelings. Thank you so much for sharing your thoughts and story. You're a gem!

Follow Ups:

• Re: Interesting chat w/sleep lab people GBoogie 22:01 1/24/03 (0)

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