For Anyone with Nocturnal Seizures

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AlohaBird

AlohaBird said:
It is so tempting to roll over and go back to sleep (and I do sometimes) but I do feel more alert if I make myself get out of bed. I wonder if this has to do with quantity or quality of sleep however. Perhaps, if your sleep is crap quality, then adding more quantity only makes you feel sleepier.
No science behind any of this, just intuitive musings.
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A bad nights sleep seems to impact on how I feel and it depends on the way I sleep. If I sleep on my back I am very rested and ready to go or on my left side I have a good night. But if I get too warm or too cold this has a say as well.
 
Fedup said:
A bad nights sleep seems to impact on how I feel and it depends on the way I sleep. If I sleep on my back I am very rested and ready to go or on my left side I have a good night. But if I get too warm or too cold this has a say as well.
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For me, if I sleep on my back, I don't rest well. I think it has to do with more mouth breathing in that position. And I seem to be better off on my right side than my left. (I wonder if anyone has ever studied these differences).
Getting too cold isn't much of an issue here but I do have to be careful to not put on too many blankets and get too warm.
I'm going to be having some ceiling fans installed in my bedroom soon to help with air circulation.
Perhaps temperature plays a part in the question of why seizures at this time of the morning. The sun is coming up and warming the whole house.
 
AlohaBird

I forget where I seen it but there is a study done on sleep and worth reading I think. I sleep better with the light off in the room and no noise like radio or TV.
 
And the black out curtains might help a lot. I live near a busy highway so I invested in blackout curtains with noise reduction in them and they are an amazing help.
 
Fedup said:
I forget where I seen it but there is a study done on sleep and worth reading I think. I sleep better with the light off in the room and no noise like radio or TV.
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If you run across that one again I'd be interested. Totally agree about real darkness and real quiet.

Bidwell said:
And the black out curtains might help a lot. I live near a busy highway so I invested in blackout curtains with noise reduction in them and they are an amazing help.
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It's easy to get to sleep here because it is VERY dark at night and after 10 pm there is rarely a car moving anywhere on the island. In the morning though, the chickens are waking up, dogs barking etc. (not my doggie though, he's still curled up with me.) So that morning noise may also be a factor.

When I go back to the mainland I need a sleep mask and earplugs to get to sleep.
 
AlohaBird, I think Kaiser MAY have sleep studies because I just googled it and according to my VERY quick google, it does. I am thinking you looked it up under Neurology but sleep medicine is no longer under Neurology -- Sleep Medicine is its own entity. It is true that they all started out as psychiatrists and neurologists, but now they are all Sleep Medicine Doctors!!!!!
 
Interesting. I wonder if Honolulu has any Sleep Medicine Doctors.

Off to kp.org

They do indeed have a sleep studies clinic. Now the challenge is to get my neurology appointment to happen at the same time since both are on Oahu. I just found out my neuro appointment is in F*****G SEPTEMBER!!!!!! I have been trying to get a neurology appointment for 2.5 months already. By the time i get there is September it will be 5 months. But Oh yes, you should always "check with your doctor" before changing anything. GRRRRRRRRR.

Someone from the sleep studies department is supposed to call me back. Yeahright. I don't get the impression that the sleep clinic is really Sleep Medicine Doctors, more like techs who know how to tell if someone needs a CPAP machine or not. The trick is going to be getting some interdepartmental cooperation going. This is in an organization that can't even get a notification out to me that I have an upcoming appointment.
 
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AlohaBird said:
Interesting. I wonder if Honolulu has any Sleep Medicine Doctors.

Off to kp.org

They do indeed have a sleep studies clinic. Now the challenge is to get my neurology appointment to happen at the same time since both are on Oahu. I just found out my neuro appointment is in F*****G SEPTEMBER!!!!!! I have been trying to get a neurology appointment for 2.5 months already. By the time i get there is September it will be 5 months. But Oh yes, you should always "check with your doctor" before changing anything. GRRRRRRRRR.

Someone from the sleep studies department is supposed to call me back. Yeahright. I don't get the impression that the sleep clinic is really Sleep Medicine Doctors, more like techs who know how to tell if someone needs a CPAP machine or not. The trick is going to be getting some interdepartmental cooperation going. This is in an organization that can't even get a notification out to me that I have an upcoming appointment.
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Aloha, in 2001 we were with kp. Since my seizures were controlled, the GP said I didn't need to see a neurologist and just kept refilling the prescription and taking the annual blood draw. In hindsight, would have been nice to have a neurologist established and who knew me in my "controlled" state once the seizures returned. I'm sure they love the $ they saved by my minimal visits. Was naive on my part to just go along with it.
 
AlohaB, You are probably right about the techs but the sleep doctors ARE neurologists and the sleep-studies I have had done in-house in the Sleep Medicine Department of the hospital have included workups for nocturnal seizures. I am older than you are and Medicare pays and I bet that is part of what is making it easier. Also I think they might just give you a machine so that you can do it yourself at home. I know that a couple of Kaiser-like places are doing that lately. As far as I am concerned you are now in very hot water because now you are dealing with the beaurocracy. Start training. Making these neurology and sleep medicine appointments could be LONG and HARD as you already know. So BE STRONG. Eat right and drink coconut water. I should tell you that I finally have the date for the VEEG on 16 July. It took all morning once I decided that I had to do it myself. I simply bypassed the medical assistant who was supposed to be making the arrangements [and obviously was not doing it] and nobody from two different hospitals batted an eye.
 
KP does have an incentive to get this organized so I get the sleep study first before the neurology appointment. And I'm also trying to work getting a mammogram into the mix.

With my coverage here, they have to pay for the plane flight and transport vouchers in Honolulu so it is in their interest to get this all arranged for one trip and not three.
 
Well, it turns out i can get a sleep study to check for sleep apnea but it has to ordered by my neurologist.
The thing is I need to have a neurologist "of record" meaning I have to have an actual face to face appointment first. On Oahu. In September.

So it's about a six month turnaround just to get a neuro appointment here. (I had to get a primary care one first to refer me to the neuro.)

No idea how long it will be after that to get the sleep study.

I'm thinking about just going with my Neurofeedback guy here on Molokai who has never treated an epilepsy patient before but at least he's *here*. That is also private pay but I don't have to wait six months to get to him.

Has anybody ever read credible evidence about negative reactions to NFB? I get the impression that the worst that could happen is that it would do nothing and be a waste of time and money. Kind of like Kaiser.
 
I think it would be desirable to have the sleep study done no matter how you have it treated because YOU NEED TO KNOW WHAT YOU ARE GAMBLING WITH. A measure of the number and duration of apneas during the night gives you a basis for knowing how well you are taking care of the problem beyond your experience of well being. For me this has been important beyond the irritation of using the CPap because my genetics set me up for dementia and stroke separate from issues of seizures. I have a [benign] aneuruism and I want it to have a nice, comfy, undisturbed home. None of this bouncy apnea stuff for my aneurism!So knowing that I have taken care of myself in this particular way that is measurable has been important and of real satisfaction to me over the years.
Every CPao machine comes with a "smart card" that records the number & duration of apneas that occur every night. The doctor then uses the card to adjust the pressure so that it is at its optimal level, I mean that the number and duration of apneas are under a destructive level. Once when I was having the most difficult time with nighttime seizure events, this change of pressure on one doctor's visit resulted in a dramatic improvement overall that showed up on really amazing graphs on the doctor's computer. And I felt a whole lot better.
I think you should have that sleep study if possible. I have had a number of them, including the overnight when they were checking for seizure activity. The neurology department at the hospital where I have had seizure treatment has shown itself to be shockingly incompetent more than once. At the same time in the long term the neurologists down the hall [so to speak] who treat my sleep problems have been sterling. Hard to fathom.
 
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AlohaBird, I think the neurofeedback is a wonderful plan and I am hoping that the realities of life don't preclude you having a sleep study. In the best of all possible worlds you would have a sleep study. Sleep medicine is a big bird. They treat people -- lots of people -- who are not using CPap machines. I think you might be able to get support for the neurofeedback from the sleep medicine docs.
I think the neurofeedback might be a journey as complicated as the one using a CPap but I don't think the neurfeedback will not work -- flat-out. I think it will work. And that does not mean smooth sailing.
In the meantime stay cool!
 
Morning Bidwell,

I would still like to have the sleep study done, And you make a good point that getting rid of apnea is about overall health not just seizures. My frustration is not wanting to have to wait for the sleep study (and the Kaiser bureaucracy) anymore in order to get started with the NFB.

If the NFB guy can cure (not just "treat", we are talking about a cure here) apnea, why not just go at it directly?

The reason the NFB guy wanted me to see a neuro first was to find more precisely in the brain where my seizures are located. I have had several eegs over the years and they have never caught anything but "normal" brainwaves. Of course they didn't. They were done during the daytime. So I have no idea if mine are temporal, parietal, frontal, or what.

What I would like to have done is a VEEG like you had. How many days was yours?

I wonder if they would let me bring my dog in with me?
 
OH SURE! Kaiser is prepared for all four footed helpers! The VEEG could have gone up to 5 days. I think that is VERY rare. I was there for three days.
 
Well, the trip I have scheduled for September is just going to be a meet and greet with the neuro and an attempt to do a med review and see if there are any other options in Rxs.

I am also going to try to get an evaluation of my thyroid (probably a referral to another specialist and another six month wait) and some testing for basic deficiencies like B12.

And I did get Kaiser to schedule my annual mammogram for the same trip as seeing the neuro. They do have a mammogram machine here on Molokai for general screening but they want someone with more experience and skill reading mine since there is a lot of scar tissue in the area that could be confused with something pathological.
 
AlohaBird, The B12 deficiency I have was probably caused by the zonisamide. So yes it should be checked, but You would know if you had a B12 deficiency. For one thing I am yellow and my eyes are yellow/brown and I have umpteen symptoms even now that I have been taking the shots for 3 weeks. This is taking too long.
 
Bidwell said:
AlohaBird, The B12 deficiency I have was probably caused by the zonisamide. So yes it should be checked, but You would know if you had a B12 deficiency. For one thing I am yellow and my eyes are yellow/brown and I have umpteen symptoms even now that I have been taking the shots for 3 weeks. This is taking too long.
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That sounds like a liver issue. Jaundice. Have they done a liver function test?

I don't really think I have a B12 deficiency to the degree that you did. I have tried some B12 patches with no particular difference one way or the other. I eat a fair amount of grass fed meat so I probably get enough in my diet.

It would just be interesting to get a few tests instead of shooting darts blindfolded.
 
Well I had my neuro appointment today in Honolulu, flew over and back and managed to squeeze in a mammogram too (pun intended).

It turns out the way Kaiser does things like sleep studies in this part of the world is that they contract them out to the well funded private hospitals.

The neuro I got in the pot luck draw is not a Kaiser employee, he just consults for them two days a week. The rest of the time he practices at Queens Hospital, very well known around here as a top shelf medical facility. He wrote up a laundry list of tests some of which will be done at Kaiser but the multiple day sleep VEEG study will be done at Queens.

We will be monitoring for possible apnea activity as well as monitoring EEG to see if these could be PNES.
 
AlohaBird! I am TOTALLY thrilled that you have the guidance of an up-to-date, pro-active neurologist. And he must have been astonished by your knowledge base! Of course, there is work ahead for you, but bring it on, I say!
 
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