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Well I posted a couple of weeks ago that my doctor was looking into a possible diagnosis between seizures, narcolepsy, and migraines. I am still waiting to see how that goes. 

Wednesday I had my consult with the sleep clinic which flagged me a lot for narcolepsy, which may or may not be relevant as I know these intermesh a lot with each other.

I have continued logging all of my seizure like episodes since I've noticed that they were more than just typical chills. If I knew how to link that post I would ;) .The gist is for those who have not read it is it a chill like feeling in the back of my Neck, head and shoulders. My eyes would roll back and eye lids would flutter. Started out lasting roughly 2-3 seconds then progressed over time to 3-5 seconds. There was a cold shiver included with the eye roll and my head would snap backwards.

As time passed by symptoms slowly progressed. Some nights I would have 5 or 6 back to back, mainly if I were in a vehicle that had wind and ac sometimes none. Seems to be triggered by wind and cool/cold air. I cannot induce it nor does it happen all the time. Afterwards, I am sometimes sick or have aa headache, but I am always sleepy for the rest of the day.

I have continued to maintain awareness. In the last week or so my arms have begun to jerk upwards during these 'episodes' and shake a touch. Not long. Like I said they only last a couple of seconds.

Now...the newest thing that would freak me out if I were not on an awesome bipolar regimen that squashes my anxiety.....

Yesterday I had an epidose. The heat index was about 100 degrees and I was sitting in front of a huge fan trying to stay cool. Hair was pulled up. Next thing I knew my arms, shoulders, neck, and head tensed and jerked. My head snapped back. Eyes rolled. Lids fluttered. I can't remember if I felt the usual cold shiver or not because when my arms jerked upwards I felt a warm tingle that felt like electricity [best way I can describe it] go all the way to my finger tips of both arms. It matched perfectly. It was not painful like neuropathy, not pins and needles, just a warm electrical tingly feeling if that makes sense... I don't know how else to describe it. It started and stopped with the episode. 

 

Does anyone have any ideas on this???

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On 9/16/2016 at 8:38 AM, Rabidtears said:

As time passed by symptoms slowly progressed. Some nights I would have 5 or 6 back to back, mainly if I were in a vehicle that had wind and ac sometimes none. Seems to be triggered by wind and cool/cold air. I cannot induce it nor does it happen all the time. Afterwards, I am sometimes sick or have aa headache, but I am always sleepy for the rest of the day.

Both seizures and "sleep attacks" can be triggered by temperature for some people. I feel sick, have headaches, and am sleepy after some of my seizures. I don't know if people with "sleep attacks" feel similarly after.

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I have continued to maintain awareness. In the last week or so my arms have begun to jerk upwards during these 'episodes' and shake a touch. Not long. Like I said they only last a couple of seconds.

By definition you maintain awareness during Simple focal seizures, and can maintain partial awareness in Complex Focal seizures. Cataplexy from Narcolepsy can also mimic seizure-like activity and you also maintain awareness.

Jerks can be caused by both Narcolepsy (called a hypnic jerk) or Epilepsy (called a myoclonic jerk) ((and of course other things to anyone else reading this)). Really the only way to tell is through testing. Fortunately an EEG can tell if it's cause by electric activity (epilepsy) or you falling asleep (narcolepsy).

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Now...the newest thing that would freak me out if I were not on an awesome bipolar regimen that squashes my anxiety.....

Yesterday I had an epidose. The heat index was about 100 degrees and I was sitting in front of a huge fan trying to stay cool. Hair was pulled up. Next thing I knew my arms, shoulders, neck, and head tensed and jerked. My head snapped back. Eyes rolled. Lids fluttered. I can't remember if I felt the usual cold shiver or not because when my arms jerked upwards I felt a warm tingle that felt like electricity [best way I can describe it] go all the way to my finger tips of both arms. It matched perfectly. It was not painful like neuropathy, not pins and needles, just a warm electrical tingly feeling if that makes sense... I don't know how else to describe it. It started and stopped with the episode. 

 

Does anyone have any ideas on this???

Tonic seizures can cause tensing/stiffening of the body (one side or both, and your awareness can be preserved). I have tonics and myoclonic's with my Complex Partials although rarely at the same time, they often happen in sets, and most often happen after I wake up or am tired. The myoclonics's to me kind of feel like a jolt of electricity, maybe more like adrenaline... like going up and down on an elevator at the same time. 

During my VEEG (an in-patient EEG where you're hooked up to an EEG and are recorded for a few days to a week) I had a very very similar episode you described. Arms tensed, eye's fluttered then rolled back, head fell backwards, and I blacked out. That was only the second time that episode occurred. I was surprised to hear that neither falling asleep or electrical activity showed up on the EEG readings. My Neuro could never explain it, but knows my seizures are "deep" in my brain and just chalked it up to a regular Complex Partial.

I'm very interested in hearing your story and what is causing your episodes, especially with going through similar experiences. The fact you have a specific trigger should really help your doctors pinpoint the cause and give you a solid answer.

Have you had your EEG yet? Do you have a sleep study scheduled? Please continue to update :)

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Thank you so much for your response! Most of what I find online about narcolepsy if the more common info.

I did have my eeg and my mri w/contrast and both showed to be normal.

My consultation with the sleep clinic showed a lot of red flags for narcolepsy so I have a sleep study scheduled for Nov 6 and the mslt is Nov 7 so long as I do not have sleep apnea. She did say that due to my being bipolar and itbeing too risky to take me off of my "dream suppressing" medications I should not be surprised if I have to redo the mslt. 

My pcp said that so far everything seems to be pointing more toward narcolepsy as opposed to seizures but he wants me to keep my appointment with the neurologist in case he missed something. 

Narcolepsy seems to be simple yet complex in what all it entails. I've been trying to research and learn about it but I'm finding more of the same common textbook stuff rather than things that fit what I've been dealing with. I am glad to hear, to a point, sorry guys just don't want to be alone lol, that there are triggers aside from emotional ones such as temperature. That the jerks and everything else can also be a part of it too. 

I Am continuing to log everything. So far everyone has been happy about that. 

My biggest challenge is trying to make myself stay awake and I believe I cutting out caffeine will be like losing an arm! Oh well my mom should be tickled about the low carving part at least -.-

 

If this post was long I apologize. It looks massive on my phone.

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It's not massive at all, and even if it was it would still be okay ;)

I understand how little first-person information is out there about Narcolepsy and how the symptoms seem to overlap with just about everything else. It is a very complex and multi-system disorder that I have yet to understand even when I was going through the possibility of diagnosis. You'll also find many people on seizure/Epilepsy boards who can't fathom the confusion in diagnosis between the two. But with people like me, like us, separating symptoms isn't so clear cut and diagnosis can be difficult especially being on other crazy meds! And FWIW emotional triggers are more associated with Cataplexy, but from my understanding "microsleeps" and other symptoms of narcolepsy can have many physical triggers.

I'm glad to hear your MRI and EEG came back normal, but then again sorry you have to wait so long to get a clear-cut answer about narcolepsy.

The mslt basically tests how much and how fast you fall into REM sleep which crazy meds can interfere with. So there's the possibility of it giving false negatives. Unfortunately an EEG for seizures is close to the same. Medications don't suppress EEG readings, but they often don't show abnormalities unless you are having an episode. That issue caused me a problem for years.

Definitely keep logging everything, and try to include close friends and family in. It helps to have a good support system to help identify things you may not be able to and log things you can't. 

Good luck staying awake, and double luck on quitting caffeine. I do not envy you :P

 

 

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38 minutes ago, Sloane said:

And FWIW emotional triggers are more associated with Cataplexy, but from my understanding "microsleeps" and other symptoms of narcolepsy can have many physical triggers.

Does that mean that cateplexy does not have physical/environmental triggers, or just that it is not as common?

41 minutes ago, Sloane said:
45 minutes ago, Sloane said:

 

I'm glad to hear your MRI and EEG came back normal, but then again sorry you have to wait so long to get a clear-cut answer about narcolepsy.

The mslt basically tests how much and how fast you fall into REM sleep which crazy meds can interfere with. So there's the possibility of it giving false negatives. Unfortunately an EEG for seizures is close to the same. Medications don't suppress EEG readings, but they often don't show abnormalities unless you are having an episode. That issue caused me a problem for years.

 

 

 

 

The false negatives part is what concerns me. Not that I'm wishing to have one disorder or another, I just want to know. It is frustrating. I had wondered about the eeg, and I asked the tech who did mine if it would read abnormalities only if I were having an episode and she said no and told me to go to sleep. Then during the hyperventilation part, I didn't know it was hyperventilation...she told me to take slow deep breaths.

 

Cutting caffeine is going to be miserable. It has become my ritual to go next door to drink coffee every morning!

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13 hours ago, Rabidtears said:

Does that mean that cateplexy does not have physical/environmental triggers, or just that it is not as common?

I honestly can't answer that question. My knowledge of cataplexy is close to nil, but my understanding is that it's triggered by emotions. Narcolepsy is so complex though and causes a lot of weird neurological symptoms and cataplexy is just one of them. So it may be triggered by emotions but it is a very physical/environmental/neurological thing.

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The false negatives part is what concerns me. Not that I'm wishing to have one disorder or another, I just want to know. It is frustrating. I had wondered about the eeg, and I asked the tech who did mine if it would read abnormalities only if I were having an episode and she said no and told me to go to sleep. Then during the hyperventilation part, I didn't know it was hyperventilation...she told me to take slow deep breaths.

I totally understand the frustration of uncertainty and wanting an answer...ANY answer.

My Neurologist has told me plenty of times that EEGs don't always show abnormalities unless during an episode, and sometimes (depending on the kind and location of the seizure) abnormalities don't even show up even when there is a seizure for some people. EEG techs can read and administer tests but do not have the qualifications to answer questions. In matter of fact, most are instructed not to answer questions or read the results until a MD looks them over. 

In my own personal experience (and others from boards I visit) there are even some General Neurologists who don't fully understand Epilepsy (neurologists who specialize in epilepsy are called eplileptologists). I wouldn't be surprised -if it so happens- your Sleep Neurologist can't clearly diagnose then you'd be sent for more thorough testing. There are many kinds of EEGs that are used to help catch infrequent episodes (like a VEEG or a 24 hour EEG). Hopefully it won't come to that and you'll get a clear answer with your sleep doc!

And also you're supposed to sleep during the EEG. I can't explain how it works but being sleep deprived, falling asleep, and waking up helps trigger the signs of a seizure disorder. Sometimes medications and brain cooties interfere with that process. I have never been able to fall asleep during a sleep-deprived EEG. The hyperventilation does similarly to the sleeping, but mainly triggers certain kinds of seizures or seizures from that specific trigger.

It wouldn't be the first time a tech didn't give proper instructions, and it might help to raise that issue with your PCM or sleep doc just to have it in your records.  

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Cutting caffeine is going to be miserable. It has become my ritual to go next door to drink coffee every morning!

Creating a new ritual could be helpful so you're not thrown off so much. Assuming "next door" is a coffee place maybe try some (caffeine free) flavored teas? You'be be able to keep your ritual while keeping caffeine free.

FWIW in my experience going from caffeine every day to none can cause headaches. If they occur, especially if they occur often, I suggest to be weary of how often and how much pain reliever you take. Too much or too often medicating headaches can cause rebound headaches which creates a vicious cycle. I've learned that the hard way so I'm sharing that bit of information with you :P 

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Thank you so much for all of your input. You honestly did help to make a lot of this less confusing! :)

 

I will remember what you said about caffeine headaches <_<

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I'm wondering if I might have found a connection.

When I went inpatient for bipolar I was put on depakote er 500mg in the morning and 500 at night. When my saw my apn (pdoc) she changed it to 1-2 tablets at bedtime depending on how I felt. That pretty much just effed with my mind so I took it upon myself to alternate days. One night I would take 2 at bedtime and the next day I would take 1 in the am and 1 at night so on so forth. I didn't think about the er part.

This last week I decided to just take it at bedtime only and see how I did with my episodes... I'm going to knock on wood but so far I haven't hadanything beyond strong tingling in my neck on occassion.

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If there is an inkling that the depakote is working, you can go up much higher than 1000mg (at least for migraines; maybe for seizures it is different).

I don't think it is a good idea to vary how you take your meds. If it were me, I would stick to either once a day, or twice a day, and not alternate. Depakote is all about blood levels, and you are kind of futzing with that when you take it differently on different days. I know that if my husband missed a dose, and his blood level dropped, he had a seizure within a couple of hours of missing the dose. Now he is on a new seizure med, Breviat, that has stopped his seizures entirely. He had partials that generalized into tonic-clonics.

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