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Dr. Stoll, Others--
I've been lurking here for some time and have spent hours combing the archives. I still haven't run across exactly the following symptoms, which I hope someone will recognize and help us solve.
My Dear Husband has episodes that he terms "shut down," in which he over several minutes he becomes very sleepy and lethargic, in the middle of whatever he's doing. He could be eating, getting ready for bed, driving (this is alarming!), getting up for the day, or anything. His eyes get droopy (for some reason left eye first, and it's always more droopy than the right), his speech gets slow and maybe even slurred sounding, and he may stop in mid-sentence while talking, and then when prompted will think he had finished the sentence, and report that he'd been dreaming. He can "fall asleep" with a cup raised part-way to his mouth, or a pen part-way through writing a note. Or, any time of day or night, sitting on the toilet.
This does not seem to be narcolepsy -- it is not associated with periods of particular emotional stress or excitement. It is not so sudden that he falls down. But his coordination tends to be affected, as you might expect!
He does take some Rx drugs for pain, but these episodes started before the meds. He does not drink alcohol or caffeine. (We're both on the WFD).
These episodes are associated with chronic musculoskeletal and neuropathic pain, but not in a predictable way. DH often reports that his pain is worse around the time of these episodes, but not always. There seems to be no predictable relationship to his pain medications, either. Dosing and timing of the meds is stable; timing of the episodes is not. Once the episodes start, they last 6-8 or more hours. Sometimes an extra dose of narcotic pain meds will abort or shorten/lessen the episodes. DH says he has met other pain patients (eg at pain clinics) who report similar experiences.
What might be causing this? Pain keeps most of us awake, but might it work differently for chronic pain patients? Or could it be something else entirely, like food allergies? Some weird type of epilepsy? MCS? Some deficiency syndrome? "Stress effect storage in the hypothalamus"? We're at our wits' end trying to sort this out.
Various allopaths have been of no help: neurologists, pain physicians from various specialties, psychiatrists, GPs. Their diagnoses range from useless ("I've seen this before/never seen this; and/but I don't know what to tell you") to insulting.
DH has been practicing meditation for years, for pain and stress control, BTW.
Please help! Any and all insights welcome.
In Reply to: strange episodes -- what are these? posted by Worried Wife on March 17, 2002 at 19:32:41:
Hi, Worried.
This sounds like Petit Mal Varient to me but I am astounded that all the docs he has seen have not suggested this to both of you.
If I knew what part of the country you were from I might know of someone competent in your area to put this together for him.
In the meantime, he should be getting copies of ALL his medical records in his files at home. If we can find someone competent, he will need everything that has been done to see a pattern. In the meantime, he can be constructing a personal history (as described in the Health Coaching Protocol on this 'site).
Walt
In Reply to: Re: strange episodes -- what are these? (Archive in neurology.) posted by Walt Stoll on March 18, 2002 at 11:20:24:
Thanks, Walt.
We live in North Carolina.
He's on high doses of Neurontin for the neuropathic component of his chronic pain, and this hasn't seemed to make much difference to the episodes. (Does help tame the electrical-shock types of pain, though).
He's seen Dr. Hauser in Chicago thanks to Helping You, for neck pain (prolo) and whatever else might help. Dr. H hasn't gotten to this particular issue yet, but since DH is already traveling up to Chicago, if you know someone there, DH could see him/her during one of his trips.
We're open to sending him to other places, too, if we're convinced that someone can help.
In Reply to: strange episodes -- what are these? posted by Worried Wife on March 17, 2002 at 19:32:41:
Do you think it's possible that he could have Narcolepsy?
These people fall asleep suddenly,but can be easily awakened. There are different types. Does he sleep well at night or wake up frequently? Raisa
In Reply to: Re: strange episodes -- what are these? posted by Raisa on March 18, 2002 at 13:07:12:
He sleeps poorly, having trouble falling asleep and awakening frequently because of pain. I've often wondered about the relationship between his nighttime sleep and daytime "shut-downs."
As I understand it, classic narcolepsy attacks are brought on by any form of excitement -- good or bad. This is not the case with DH.
In Reply to: Re: strange episodes -- what are these? posted by Worried Wife on March 18, 2002 at 15:45:29:
I'm not sure at all, but I think there are different kinds of narcolepsy, and not all happen because of excitement but can just happen for no reason. But, as Dr. Stoll said, the specialists he has seen surely would have thought of this as well as other fairly common causes. But, you never know...... I just re-read your original post, and you did mention that you didn't think it is narcolepsy -sorry. Maybe since some of the other patients at the pain clinic say they suffer from the same episodes, it could be related to some side-effect of one of the medications? Raisa
In Reply to: Re: strange episodes -- what are these? (Archive in neurology.) posted by Worried Wife on March 18, 2002 at 12:50:48:
Thanks, Worried.
I don't know anyone in your area.
However, since you are already traveling to Chicago, you would be able to use the references in the archives about holistic practitioners to track down someone who might help close to you.
Let us know how you do with him.
Walt
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