For Anyone with Nocturnal Seizures

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I was trying to find Nak's Sleep Deprivation infographic again, and ended up here. recently have had apnea, whereas I have had sleep apnea for years. I am not overweight. My sleep apnea eventually wakes me up. I recently had apnea for the first time, when I first trying to go to sleep. I normally dream I am having a seizure, or am not breathing, before I wake up, whatever the case may be, and I either wake up gasping for air or having a seizure. I have had more trouble breathing on my left side, or on my back, (more stress on the heart I think). I can only lie on my back after I have slept already for a while. I am now on a rescue inhaler (Aluterol) which has helped with the breathing, but did have sleep apnea since I started taking it. I think the Albuterol is helping a long term bronchial infection I have had (MMD2 complication again). I am interested in the study Bernard mentioned about nocturnal seizures, and "the alarm." I never wanted to use a Cpap machine because it is noisy, and I am a very light sleeper.
 
Michael, C Pap machines are difficult but if you must use one, people DO get used to them. I have got used to it. In my case the machine noise masks other noises, such as city street noises and even tinnitus. But there are other issues, such as getting the right mask, which sometimes takes quite a lot of trouble, and getting the mask to fit every single night If the mask does not fit every night it might dry out your eyes and that is very bad too. For me it has been so irritating to wake up out of a sound sleep, wanting to turn over and having to escort all that tubing to the other side of me.!!! Like you, my genetic load for cardiac events is terrible so about 20 years ago I started using the c-pap. It has been easier and easier as the years have passed and I'm still here. Also the technology and the delivery systems have improved over the years. That does not make it great. BUT life with Cpap is better than the alternative!
 
Michael, I want to add one more point, which is that when I do not use the machine for one reason or another, I do not feel well the next day. I am much less alert, fuzzier in thinking, and tired. I would much rather use the machine than not because the pay off is immediate. I also want to say that the machine keeps track of the number of apneas it is correcting. I have never been conscious of an apnea.
 
Bidwell, I know my inhaler has helped considerably. I can feel it working after I use it. I sleep better because of it. I feel drainage in the back of my throat, even though I do not have sinus issues. I can finally catch a deep breath after two years of not being able to do so, although the deep breaths are infrequent. I like to proceed very slowly with alternatives because my physiology is so sensitive. Once I start a pharmaceutical, I always have a goal to get off it. That has not worked well, however. I'm adjusting to the side effects of the inhaler, but I am still concerned about its cardiac effects.

In order to be approved for a Cpap, I have to submit to a sleep study. I do not sleep well when I know other people are checking on me. My body cannot tolerate hospitals, or clinics literally. I eventually end up having seizures in those environments because of all of the electricity, and they only stop once I have left the building. Grocery stores are the same way. I cannot physically tolerate the cash registers because of the EMFs and sine waves from scanners, decoders, and the like.

My sleep apnea is inconsistent. The episodes I am aware of tend to be bunched together. It is when they get bunched together that I wonder if I will wake up the next day. (I have always wanted to go in my sleep anyway). Getting help from medical professionals is such an ordeal for me at this point anyway. I feel like I need help just do deal with doctors. The doctor that prescrbed my inhaler did not tell me she would do so. I found out when I picked up another prescription at the store. I did email her and thank her.
 
Aloha, I did find Nak's posting before your reply. I still don't remember where it was. My brain just does not register things properly. I did some reading about sleep disorders when I thought I had Chronic Fatigue Syndrome, and also when I knew I had Fibromyalgia. I've always had REM sleep. I just thought my brain skipped Delta sleep. Delta sleep is the restoring kind when the body is refreshed. Since I learned I had MMD2 I understand why I am tired all of the time.
 
Michael, I see what you mean about how everything ends up being a catch 22. A while back AlohaBird had a reference to some exercises to help apnea -- maybe it would be worth it to incorporate those in your life. You know that I am not an expert or even close to being one. I just happen to have sleep apnea. So take whatever I have to say with that in mind. However, I wonder if the little breaks in oxygen that the machine corrects which are called apneas are different from these events you consciously experience and call apneas.What you go through seems very frightening. But the sleep apnea that the machine addresses take place when a person is unconscious. I wonder if they are the same thing? NEW PARAGRAPH. I pay $30/month to belong to an On-Line "Ask the Doctor a Question" organization. Its name is HealthCareMagic. It is a collection of doctors of all specialties from all over the world. You write your health care question and even send your medical records and your chosen doctor will answer back to the best of his/her ability. Sometimes the answers are worthless but often they give me back up or a second opinion that I can follow up on. And whether they have been helpful or not, they have all been very respectful of me. I don't belong to it for many months at a time when I am not dealing with medical issues but I have rejoined lately because I am going into a medical heavy-duty phase.I wonder if something like that might be of help. I also copy the material from Healthcaremagic to take to the providers I see in person because the questions and answers have already been carefully worked out and written down.More than once it has been very helpful that way. That is about all I can think of right now. It is ridiculous to say it, but I will say it anyway -- RELAX! As best you can under the circumstances.
 
proper diet, and several of the meds caused sleep apenea for me,
i found minimizing the meds went a long way, and finding foods that work helped a lot to, little to no fast food.
 
Yes, a lot of AEDs can depress respiration which can be a big cause of Central Sleep Apnea. And any food that leads to inflammation can lead to the obstructive kind of sleep apnea.
And then apnea ban be a mix of CSA and OSA.

For me, cutting out the cow dairy products helped even long after I had gone paleo and all organic everything. Going gluten free was the first big step.
 
Question for those who have nocturnal seizures:

Do yours tend to happen at any particular time of the night?
Mine always happen in the morning just before I would be getting up anyway.

I'm trying to work out what could be particular to this time slot.

1)Is there such a thing as sleeping too much? Maybe I have had enough sleep and my body is trying (not very subtly) to wake me up.

2)Dehydration. I tend to wake up with a really dry mouth.

3)Dehydration ties in with electrolyte deficiencies/imbalances. Could be magnesium, potassium, sodium or some combo of the above.

4)Dry mouth dehydration also ties in with sleep apnea which I have a gut feeling is a player in all this.


Thoughts? Insights? (below added via "crowd sourcing")


5)Changes in light. Tie in with circadian cycles. Brain wave patterns.

6)Changes in temperature. Sunlight warming house.

7)Morning noise levels increasing
 
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The sleep apnea tie-in does make sense. IF sleep apnea is at play, your body has been struggling all night with an oxygen deficit. Your mouth dries out in the struggle to breath through it. When I don't use the cap machine I wake up feeling groggy, nearly as if I have had too much sleep -- but it is a feeling that does not leave me all day.
 
The "transitional" brainwaves ones that occur just after falling asleep and just before waking are associated with a greater vulnerability to seizures. So that could be one factor to explain the timing. Another possibility might have to do with when your medications are at their "trough" levels.

Do your seizures have a known focus? There seems to be a correlation between where in the brain the seizures originate, and when they are most likely to occur. (These time frames are pretty loose, and don't hold true for everyone):
-- Occipital seizure occurrence peak between 4:00PM and 7:00PM
-- Parietal seizures peak between 4:00AM and 7:00AM
-- Frontal lobe seizures peak between 4:00AM and 7:00AM
-- Mesial temporal lobe seizures have a primary peak in the late afternoon between 4:00PM and 7:00PM and secondary peak in the morning between 7:00AM and 10:00AM.

It's not entirely clear why this correlation exists -- speculation is that it's due to some combination of circadian rhythms (24-hour body clock) and external rhythms (like meals and sunlight).
 
AlohaBird said:
Question for those who have nocturnal seizures:

Do yours tend to happen at any particular time of the night?
Mine always happen in the morning just before I would be getting up anyway.
I'm trying to work out what could be particular to this time slot.

1)Is there such a thing as sleeping too much? Maybe I have had enough sleep and my body is trying (not very subtly) to wake me up.

2)Dehydration. I tend to wake up with a really dry mouth.

3)Dehydration ties in with electrolyte deficiencies/imbalances. Could be magnesium, potassium, sodium or some combo of the above.

4)Dry mouth dehydration also ties in with sleep apnea which I have a gut feeling is a player in all this.

Thoughts? Insights?
Click to expand...

Often seizures of frontal lobe origin can occur between the hours of 4 and 7 am, which is when mine occur, so it could be your seizure type relating to time of occurrence.

1. I am not familiar with the body using a seizure to wake someone up because they have had enough sleep. More likely you are in a lighter stage of sleep when you have technically had enough sleep, and this is lighter sleep stage (which we go into and out of throughout the night) is attributable to the seizure.
2. Normal, I would say, if someone sleeps with their mouth open often or did not drink enough in the evening.

3. Blood tests can help determine if electrolytes are out of whack, but I am sure you know this.

4. Have you been tested for sleep apnea yet? My neighbor was suspected to have it, and until her formal test was told to use pillows to make sure she stays sleeping on her side (less likely position to trigger apnea episodes, at least of the obstructive kind).
 
Sorry, Nakamova - I think we posted at the same time so I hadn't seen that you responded already!
 
Three good answers all posted at once! You guys rock!

Bidwell, the groggy feeling you describe is how I feel on days when I wake up with the going into a seizure feeling.

Nak, yes, my neurpofeedback guy mentioned something about the timing and the brain being in vulnerable transitional state between two different brain wave patterns.

He also would like to know if my seizures have ever been localized. I have never had anything but "normal"come back on EEGs, many over the years so I have no idea. They even did a sleep study once but they can't seem to get my brain to do a command performance.

The sunlight coming in the windows is another potential factor I hadn't thought of. Blackout curtains might help. Or maybe making myself get to bed earlier would be better.

Masterjen, I wish my dog could tell me if I sleep with my mouth open but I am starting to think that maybe I do. I feel horrendously thirsty in my mouth but a small sip of water corrects the problem so it doesn't seem to be deep body thirst, just dry mouth membranes.

No, I haven't been tested for apnea and I've been informed that Kaiser neurology doesn't offer any sleep studies at all. My local Molokai nuerofeedback guy had wanted to wait for a Kaiser sleep study to locate my seizure focus but it doesn't look like that is going to happen.

The Magnesium L-Theonate I'm taking definitely seems to help. The couple of times that I have forgotten to take it before bed, I have had trouble getting to sleep and leg cramps.
 
AlohaBird

AlohaBird said:
Question for those who have nocturnal seizures:

Do yours tend to happen at any particular time of the night?
Mine always happen in the morning just before I would be getting up anyway.

I'm trying to work out what could be particular to this time slot.

1)Is there such a thing as sleeping too much? Maybe I have had enough sleep and my body is trying (not very subtly) to wake me up.

2)Dehydration. I tend to wake up with a really dry mouth.

3)Dehydration ties in with electrolyte deficiencies/imbalances. Could be magnesium, potassium, sodium or some combo of the above.

4)Dry mouth dehydration also ties in with sleep apnea which I have a gut feeling is a player in all this.
Click to expand...

Yes I believe there is such a thing as too much sleep, well for me anyway. I find if I get up at 6 am I have a good day, I can sleep till 7 am but no later.

I get very dehydrated during the night and so I always bring a glass of water to bed with me and I still tend to wake up with a dry mouth, but not as much.

I find if I go to bed at mid-night I get up at 7 am if I am to get up at 6 am I am in bed by 11.30 pm at the latest. I fall asleep during the afternoon usually around 2 pm till 5 pm.

So for me I find a connection.
 
For me, Lamictal is what gives me dry mouth and extremely dry eyes. :( It's not pretty when I wake up in the morning.

I wonder if there's such a thing as "slow release magnesium" so the levels would be steady all night long and into the morning.
 
Fedup said:
Yes I believe there is such a thing as too much sleep, well for me anyway. I find if I get up at 6 am I have a good day, I can sleep till 7 am but no later.

I get very dehydrated during the night and so I always bring a glass of water to bed with me and I still tend to wake up with a dry mouth, but not as much.

I find if I go to bed at mid-night I get up at 7 am if I am to get up at 6 am I am in bed by 11.30 pm at the latest. I fall asleep during the afternoon usually around 2 pm till 5 pm.

So for me I find a connection.
Click to expand...
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.
 
Nakamova said:
For me, Lamictal is what gives me dry mouth and extremely dry eyes. :( It's not pretty when I wake up in the morning.
Click to expand...
Hmm. I wonder if the phenobarbitol or depakote could be having the same effect on me.

I wonder if there's such a thing as "slow release magnesium" so the levels would be steady all night long and into the morning.
Click to expand...
Yeah, I think you would basically need to sleep in a wetsuit filled on the inside with
Mag oil. :)
I've been using the Mag Threonate powder at night and the transdermal spray in the morning.
 
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