Seizures sleep apnea:- are seizures and sleep apnea linked?

Myles asks regarding seizures sleep apnea and the link between them.

I am 39 years of age. 7 years ago I had a seizurein my sleep. I had an MRI, an EEG, a Sleep-deprived EEG, all were clear. The neurologist recommended no action but he suggested that I was to go in for a further consultation if it reoccurred.

Over a year later, I had another seizure in my sleep. The neurologist, a different one, recommended Dilantin. No other determination of the underlying cause was suggested. I decided against taking the medication.

The frequency of the seizures increased. At one point I had 2 in one week, but in general they were approximately once a month (all of the seizures that I have had were in my sleep). I saw yet another neurologist who again suggested dilantin. During this time I was constantly tired and my wife noticed that I stopped breathing in my sleep. I told this to the neurologist and he said that i was “not fat enough” to have sleep apnea. Dilantin disoriented me. I found it difficult to concentrate and found that I forgot what I had said minutes before. He suggested changing the dose.

I saw my 4th neurologist. I brought my wife with me. He again ignored the problem of breathing in my sleep and suggested changing medication to depakote and suggested an Insomnia Therapy course.

The psychologist at the course phoned my neurologist when she heard my wife describe my sleep problem. Due to her intervention, a sleep study was ordered. I have mild apnea and frequent arousals due to snoring.

I was put on a CPAP. After about 4 months, I found a CPAP/mask combination that I could tolerate (at the time I was a mouth breather, and the first CPAP malfunctioned - the pressure rose to 24 when I was awake, the technician’s response when I said that I woke in pain and could hardly walk was “it takes time to get used to these machines”).

With the full face mask I was still snoring. The seizure frequency reduced to one every six months but I was still constantly tired.

The seizures had damaged my teeth and a rapid palatal expansion was recommended to fix my cross bite. I found that I could breathe through my nose. I changed mask to a nasal mask and that cured the snoring problem. I was still constantly tired but the seizures stopped.

A year and a quarter later, I found that the CPAP was at the wrong setting (it was still set for a full face mask). I found out about this randomly online. I phoned my clinician and he said it would make no difference. I phoned the maker of the CPAP, resmed, and they said that it would (different leak compensations for different masks). They explained how to change the settings.

Since then I have been sleeping like a log and my concentration has improved tremendously. Also, hair is now growing on my stomach and legs (at 39 I am having my second bout of puberty).

I read some journal articles about sleep and seizures and contacted one of the researchers who recommended yet another neurologist. My insurance company has refused to pay for this consultation.

My questions relating to seizures sleep apnea are these: Can sleep deprivation on its own cause seizures (i.e. is the mechanism that causes seizures known not to be related to sleep?)? Also, what is the relationship between body hair and sleep (is this relationship in any way related to the mechanism that causes seizures)? What is the relationship between depakote and dilantin and sleep? Finally, is not automatic (or at least typical) that when a patient mentions seizures sleep apnea issues a sleep study is performed?

Thank you in advance!

Myles


  • asktheneurologist

    You have many good questions.

    How were the seizures diagnosed?

    What exactly happened during the seizures?

    Who saw you have a seizure?

    How many EEG’s have you had and were they all normal?

    thanks in advance

  • Myles replies:-


    The seizures were tonic-clonic. My wife witnessed the seizures (as they were all in my sleep, she got to witness them all). All EEGs (including 2 sleep deprived EEGs) and 2 MRIs were clear.

    seizures sleep apnea:- are they linked response. The only treatment that was suggested was dilantin or depakote. When I asked about seizures sleep apnea and the relation between them, my sleep issues were not seen as a contributing factor.

  • asktheneurologist

    1) seizures sleep apnea response
    Sleep deprivation can trigger seizures in someone with a predisposition to having seizures or what’s known as a “low seizure threshold”. Of course some predispositions may be so mild as to require extremely severe sleep deprivation to cause seizures. Whether the sleep deprivation is “causing” the seizures or triggering them in someone who is mildly susceptible is a matter of semantics.

    In general, epilepsy experts advise all patients who have had a seizure to avoid sleep deprivation for fear of triggering further seizures.

    2)Body hair can be influenced by general health including sleep deprivation and is also influenced by drugs such as depakote (which may cause hair loss).

    3) Although anti-epileptic drugs can alter sleep patterns, it sounds like your sleep was almost certainly disturbed by the sleep apnea as the changes in the CPAP seemed to make all the difference.

    4) Sleep tests are routinely performed in many situations. In particular, patients who report feeling very sleepy and falling asleep during the day despite having adequate (>7-8 hours) of sleep at night are generally sent for a sleep study to exclude problems such as hypersomnia:- which is excessive sleepiness irrespective of hours slept (this may be idiopathic which means that no cause is apparent or may be due to other reasons such as narcolepsy or sleep apnea).

    Hope that’s helpful

    Answers and advise given are always under the understanding that this AskTheNeurologist.Com seizures sleep apnea forum is meant to complement and NOT replace actual medical consultation with a physician experienced in seizures sleep apnea issues.

    All posts assume that all who read them have also read our Terms And Conditions at

    http://www.asktheneurologist.com/terms-and-conditions.html

  • Myles

    Thank you for your responses.

    Your responses have been very clear, which makes me wonder why the neurologists that I have seen have made the decisions that they have.

    In your opinion, is it unusual in cases like mine for a neurologist not to give a sleep study? I asked twice and instead they recommended dilantin and depakote, saying that I was not fat enough for apnea (I have a condition called long face syndrome, which they noted, which is a condition associated with apnea and yet it took a psychologist to be my advocate before a sleep study was done. Isn’t it enough for a patient to say “my wife notices that I stop breathing in my sleep” for a sleep study to be performed?).

    Also, I am concerned about being treated with a CPAP at the wrong setting. The first time the pressure rose to 24 and I woke in pain, the second time the clinician didn’t know that the CPAP had different settings for different face masks. Given that the difference in the quality of my life is so extreme (after 1 year and 3 months with a machine at the wrong setting), it raises three questions for me: isn’t it as dangerous to have a CPAP at the wrong setting as to have apnea and go untreated (I read that central apneas can result from the pressure being too high, which lead to strokes)?, when I told the neurologist in each case that the CPAP was at the wrong setting, is it not standard practice to call a patient in for a consultation?, and finally, what would you do if you received the treatment that I described in my first message? (I am not sure that anyone can imagine what it is like to be exhausted all the time for 5 years and at the same time find out that the treatment that you are getting is potentially harmful, it is something that I would like to ensure doesn’t happen to someone else).

    Thank you again for your responses.

  • asktheneurologist

    1)Dangers of CPAP at wrong setting:- Impossible to answer as it depends how wrong the settings are and how bad the Obstructive Sleep Apnea (OSA) is….a wrong setting could mean partial treatment , no treatment or even have negative effects but of course in theory damage could occur.

    2)Of course a wrong CPAP setting must be dealt-with. This may be done with consultation with a neurologist, pulmonologist, ENT doctor, respiratory technician or other health-care professional depending on the policy of your treating physicians. In my experience the main contribution of a neurologist in these situation is to monitor the neurological effects of OSA and its treatment (mainly sleepiness, cognitive ability (especially concentration), headaches, and checking for complications such as CVA’s (strokes) and raised intracranial pressure.

    3)This is hard to answer. It is hard to judge someone until you are standing exactly in their situation. You clearly feel that your treatment was not optimal and that you underwent years of unnecessary suffering which understandably makes you upset and for good reason. On the other hand, hindsight is one of the most powerful tools in medicine and I cannot judge the performance of your treating physicians from my standpoint.

    “it is something that I would like to ensure doesn’t happen to someone else”

    …To ensure that others get treated correctly in the future I would recommend giving constructive feedback to your physicians (a good doctor should always appreciate this if presented in the correct way). In general I always tell my friends never to go to a doctor in any field who has not been personally recommended by someone they trust.

    One of the reasons we set-up AskTheNeurologist.Comwas to provide the information and guidance necessary to allow patients and their physicians to make better-informed decisions.

    I am happy that you are feeling better now.

    EE

    Answers and advise given are always under the understanding that this AskTheNeurologist.Com forum is meant to complement and NOT replace actual medical consultation with a physician.

    All posts assume that all who read them have also read our Terms And Conditions at

    http://www.asktheneurologist.com/terms-and-conditions.html

  • Myles

    Thank you once more. I am going to meet with anotherneurologist who has done some research in Sleep and Seizures to see what she makes of it all.

    I am still amazed at what has happened. Obviously, Iam delighted that my concentration has returned and the fog is lifting. I thought that exhaustion was going to be my life and then to find that it was something as simple as a setting on a CPAP was, as you say, frustrating. (I will contact the manufacturers to see if they have some metrics on the performance of the machine at the wrong settings. I am still trying to determine how negligent that is (given that the clinician told me that the settings would make no difference, I try not to think of the consequences if I didn’t trust my instinct).)

    As this is all new to me (I only found out 6 weeksago that the machine was at the wrong setting after 1 year and 3 months), I am still trying to take it all in (which is why I am trying to get as much feedback as possible). As you probably can imagine, it all seems like a bad dream (fortunately, the body hair is an odd form of physical proof that makes me realize it is all behind me).

    One question that still bothers me, which I don’t think depends on circumstance (at least not to a realisticextent) is the question that I posed in my previous email: Isn’t it enough for a patient to say “my wife notices that I stop breathing in my sleep” for a sleep study to be performed? (It took me over a year to get a sleep study, that is after asking twice directly for one). I presume that there is some standard practice for neurologists?

    (Another issue that bothers me is why neurologists are responsible for treating a physiological condition - just because some french neurologists in the 1980s noticed the link between apnea and epilepsy doesn’t seem to me to be justification for neurologists to treat a condition that appears to relate more to ENT …. but I will not hold that against you!!)

    Thanks again.

  • asktheneurologist

    Excessive daytime sleepiness despite adequatesleeptime (especially with features of obstructive sleep apnea (OSA) wouldnormally prompt a sleep study.

    Neurologists often detect /diagnose OSA butand then hand the management over to ENT / chest physicians.

    By the way…I did not mention thispreviously,but the seizures may have been triggered by lack of oxygen to the brain(hypoxia) during the time you stopped breathing.

    Be well.

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