New here. Will be going for a sleep study on Monday and Tuesday need answers and help

[poshpoodle]

Hi, I have been exhausted and suffering from hallucinations frequently. I sit in bed and stare at whatever I am seeing and usually wake my husband. I finally went to a sleep specialist and he does not think it is narcolepsy due to the hallucinations being in the middle of the night, not upon sleeping or waking. He said he thinks I may be having night seizures (Hence the sleep studies) Can anyone tell me if you have the same type of hallucinations where you are not jerking or having odd movements but look perfectly normal (hope that does not sound insensitive). I know nothing about seizures but am trying to learn and understand more about it all so I might be prepared with questions for my doc and information for myself. I do also have migraines about 3 times a month but not sure if any of that is related. Any help with regards to night seizures would be helpful. If you suffer from them can you tell me your personal experiences- I would be so thankful! Again, I have not been diagnosed, but will be doing a sleep and nap study next week. Thank you!

[Nakamova]

Hi poshpoodle, welcome to CWE!

The sleep study is great idea, and should help to diagnose what is going on. I don't have sleep seizures myself, but I'm sure others will chime in. In the meantime, you might want to check out these threads from the archives:

Nightime Seizures
Nocturnal Seizures and Sleep Apnea
Sleep Apnea
nocturnal seizures, neurofeedback, seizures
Is there a "Neurological Explanation" for seizures that only happen in your sleep...
Seizures in your sleep

Best,
Nakamova

[poshpoodle]

Thank you! I have been reading quite a bit and will continue to do so. It is a bit frightening to think I may be having nocturnal seizures but at the same time it will be nice to know I am not crazy. My mom wants to immediately think I have schizophrenia (there is a family history) but I ONLY have these "episodes" at night. Any help, comments, suggestions or insight is so appreciated! Thank you again!

[Nakamova]

Do you tend be excessively sleepy during the day? That can be one indication that your sleep is being interrupted in one way or another, whether by seizures, apnea, parasomnia, or something else. The part of the sleep cycle your symptoms occur (REM vs. non-REM) can also help narrow down a diagnosis.

[sah313]

Hi Poshpoodle!

Before I got diagnosed with epilepsy I was seeing things all the time and having quite frequent migraines. I was petrified of telling anyone that I could see things that were quite clearly not there, I felt absolutely fine almost all of the time so I didn't bother to say anything to anyone about it for years. When eventually I did talk to my dr, she said it sounded like epilepsy and sent me to see a neurologist. I didn't believe her one bit about the epilepsy, i laughed about it for months waiting for the neurologist appointment and decided for myself it was more of a sleep disorder than anything else, even when i was at my neurologist appointment i was telling him it sounded like some sort of narcolepsy. But in the end, even without the twitching, or absences, or anything else even remotely epilepsy sounding, they found out i had epilepsy!

Its only been recently that I discovered that Ive had 2 sleep seizures and both of those felt like I had spent the whole night fighting with a bear whist running up a hill! Ive never woken up so tired and aching in my life. I went to bed at about 9pm the night before, got woken up at 7am and after being awake for half an hour, I slept the rest of the day.

Hope this helped a little, good luck with your sleep study!

[poshpoodle]

Yes, I am excessively sleepy. In fact I just woke up. I take my kids to school, then come home and go back to bed until usually noon.

My doc does not believe i have Narcolepsy because of when my hallucinations begin. I was having them sometimes 5-6 nights a week and sometimes as many as 3-4 a night. I wake my husband up to tell him what is in our bedroom and now he just tells me I am doing it again and to go back to sleep. Once I "wake up" from a hallucination I have no trouble going back to sleep but feel tired so much whether I can recall a hallucination from the night before or not. Someone told me recently when I told them seing the flashes of the sunlight as I drive down the road as it shines through the trees can make me have a migraine- she said THAT sounded like a seizure. I never gave epilepsy a thought. I honestly assumed I probably had Narcolepsy but some things did not match up. I wonder if they diagnose me with Epilepsy if I will be able to drive- my children go to private school which means I will not be able to have a bus to work out bringing them or taking them to school. I am trying to to think about it all. I wonder if any of you know whether they can diagnose seizures if I do not have one in my sleep study- I just really want and need answers. This is not only affecting my sleep but my husbands as well.

[poshpoodle]

I should say, I am never in pain after having a hallucination - just always tired. I generally go to bed at 10, wake at 6:45 to get my kids ready for bed and then I go back to bed at about 8 am until noon

[poshpoodle]

I just pray they can determine what is going on with me when I have the sleep study- I wonder though if they will be able to tell me if I am
seizures or epilepsy if I do not have one while having the sleep study??

[Nakamova]

Will the sleep study include an EEG? If so, that can potentially show abnormal brainwaves even when you aren't having a seizure.

As far as driving goes, it may be up to your neurologist's recommendation and your state's driving restrictions. Your doctor isn't necessarily not be obligated to report a seizure diagnosis to the DMV (it varies from state to state). If you have a tonic-clonic (grand mal) seizure, many states require a 6-months to a year seizure-free before resuming driving, but the rules may be different for different kinds of seizures. Something to discuss with your neurologist...

Migraines and seizure disorders are "cousins", and many people suffer from both. Migraine auras can be virtually the same as simple partial seizures. And they both can be triggered by flashing lights or dappled patterns. So it can be tricky to make a diagnosis of one or the other without EEG or other information to confirm. Do you take anything to treat your migraines?

[poshpoodle]

Imitrex for migraines but it really is not helping as of late.

[Nakamova]

Some CWE members have found that taking a magnesium supplement keeps the migraines away -- don't know if this might work for you...

[poshpoodle]

Funny you say that, I just read about that or heard about that on Dr. OZ! I will definitely be trying this~

[poshpoodle]

Sorry I have not posted in so long, I have had a lot of stressful situations arise that have kept me from being able to post. I did have my sleep study but am unsure if it included and EEG. The doc said that I had a "lot of things" that were "borderline." Whatever that means. He said I do have sleep apnea but It is quite minimal, I stop breathing 5 times in an hour. He gave me a chart to chart when I go to bed, wake, have caffeine, etc.. But to be honest I have not been doing it and need to start. He also prescribed for me .5MG of Clonazepam at bed time. The doctor also said he thought I was just having excessive dreams, etc.. and related it to sleep walking and thought the clonazepam would help me. I wonder why he prescribed this drug if it is also used for seizures. The night hallucinations have calmed down but are still there. I did sleep walk and talk the other night but also though there was something wrong with my alarm system and was telling my husband about it as I was walking to it. When i have the hallucinations they are usually of me sitting up in bed as I stare for i guess a few minutes down the hall thinking there is a man in the hallway. My husband will say "Brandy, what are you doing?" I tell him and now that I know I am not really seeing ghost or people really in my house I say to him"oh, I am doing it again!" and go back to sleep. This past week I have been smelling phantom smells. In the theatre I kept asking my husband if he smelled smoke and it started to give me a headache. On the way home from the theatre we passed a gas station I had visited a few days before that smelled horribly of very strong incense when I went inside. On the day we were leaving the theatre I commented as we passed it "Pew! I can smell their incense all the way out here!" No one in the car could smell it and we were driving by it, not even in the parking lot. Also 3 days after that I went for coffee with friends and kept saying I smelled dog poop, they said they could not smell anything. I do not recall as to whether or not I had a hallucination afterwards or not. I need to start documenting everything! I do feel very tired all the time and have to go back to sleep in the mornings after taking my kids to school on most days. There have been times when I had hallucinations every night or just about every night for some time. The clonazepam is helping with that some. I need to make an appointment with a neurologist anyway for the migraines, but not sure how they would be able to tell if they were seizures or not for sure. I do know recently I am waking up very scared and then realize I have no reason to be scared and then go back to sleep. In the past if I was afraid it was due to something i would see in a hallucination. I have never had a sore body, muscles, etc... But do feel quite tired and just feel like I need to sleep, but I feel that way after I suffer a migraine frequently too. For those of you that suffer nocturnal epilepsy, does this sound like I could have that? Is there anyone who can shed some light on this for me? If you have nocturnal seizures, do you remember seeing things after an episode and does it seem very real? Would I definitely be jerking or can that be absent in nocturnal seizures? If you have night seizures, have you used clonazepam and has it helped? The doctor seemed to think I just needed a more regular sleep pattern and to get on a better schedule. It is easier said than done when you feel like you are more active in your sleep due to episodes than you are during the day and you have to sleep...it makes me a bit of a night owl at times! Any help is appreciated! One more thing to note- and this may be insignificant but I use to always notice that just at sleep onset it would seem my index finger on my right had would twitch, i thought it might be worth mentioning but was not sure!

[Nakamova]

Hi poshpoodle,

The phantom smells sound like simple partial seizures. Definitely mention them to your neurologist. I don't have nocturnal seizures myself, but plenty of CWE members do and should chime in.

[poshpoodle]

I am trying to read all that I can. The phantom smells just started other than me having one years ago while driving thinking I smelled fresh cut roses. I loved it that day. Smelling dog poop, stinky incense or something burning...not so much! Thank you for any info!

[rory]

hi poshpoodle, i will be having 24 hour video eeg telemetry in the next few months so i feel your pain, also i hallucinate, usually early in the day or late in the day, ive never had a tonic clonic that i know of. i smell things that arent there, hear things that arent there taste things that arent there. its bizarre. but a diagnosis helps and the meds certainly help me. good luck with it all