Sounds like brain seizures?

[Blurred]

I have had these experiences for ten years or so now. I am in my early twenties now. I told doctors about them over the years and basically nothing ever came of it. I figured it was no big deal. Then I went to a sleep specialist, who happens to also be an epilepsy specialist because I am always tired. I told him about my experiences because I thought it might be related to narcolepsy (the sleep disorder). He asked a lot of questions about my experiences. At the end of the appointment he said what I described sounds like brain seizures. He ordered an MRI and sleep study. He said during the sleep study he can get the EEG he needs. Then I can also be tested for narcolepsy during the sleep study. He said I might need further testing after that though.

So I haven't been diagnosed with epilepsy and I am not even sure if that is what he meant when he said brain seizures. I am just kind of in shock? So I could use some help understanding what all of this means. I was so in shock when the doctor said it sounded like brain seizures that I couldn't ask any questions. Is a doctor usually able to determine if someone is having brain seizures from an MRI and EEG? Are more tests required if he finds something on the MRI and EEG? Or if he doesn't? I guess I am wondering what standard procedure is in this kind of situation.

 

[Nakamova]

Hi Blurred, welcome to CWE!

"Brain seizures" is an odd term for your doctor to use, since all seizures are related to the brain in some way. The doc may mean that you've been experiencing what are called "Partial Seizures" or perhaps "Absence Seizures", depending on your symptoms. These kinds of seizures are a form of epilepsy, but they don't involve convulsions or full loss of consciousness.

Simple Partial Seizures are sensory distortions that can take many different forms -- phantom smells or sounds, visual auras or distortions in perception, unusual autonomic sensations (dread, tingling, nausea, increased heart rate), feelings of deja vu, jerking or twitching, etc. You can read more about them here: http://www.epilepsy.com/epilepsy/seizure_simplepartial

Complex Partial Seizures can feature impaired awareness, sort of along the lines of sleepwalking -- the person may say or do things without being fully aware. More about them here: http://www.epilepsy.com/epilepsy/seizure_complexpartial

Absence seizures are very brief moments of "daydreaming". The person experiencing them isn't necessarily aware that they are occurring, except perhaps when they lose the train of a conversation. It's as if someone is flipping the reset button off and on very quickly. More about them here: http://www.epilepsy.com/epilepsy/seizure_absence

An EEG can potentially register the presence of abnormal brainwaves associated with seizure disorders. If you are having seizures at night, or if your sleep quality is being otherwise disturbed, the overnight sleep study should help indicate what's going on. EEGs aren't perfect -- they can miss seizures that are too brief, or originate in areas of the brain not well-covered by the sensors. But they are usually the first diagnostic tool used to confirm a seizure disorder. An MRI is used to look for structural issues (like swelling or circulation problems) that might be causing the symptoms. (For most of us with seizure disorders, the MRI is normal.) Depending on what shows up on the tests, the doc may be able to make a diagnosis. If the tests are negative, he may still make a diagnosis based on your symptoms alone.

Your doctor should be able to explain what he's hoping to rule in or out with the tests -- you should hesitate to call him to get a fuller explanation. Remember, he's working for you!

Best,
Nakamova

 

[BrandiBrat]

Hi Blurred, I was diagnosed with Epilepsy with a positive EEG and a description of my symptoms. Like Nak and Katiered said, all seizures occur in the brain so I'm not sure what the doc means by that but I'm leaning toward non-convulsive. Whatever the outcome, know that you have friends here and tons of support at CWE ((HUGS)). I know firsthand that this can be scary so we are here for you.

 

[Blurred]

Thank you both so much! It is nice to be able to have people to talk to about this. My friends and family are as confused about all of this as I am.

The first time I had the experience I got this feeling in my stomach. I thought I had become sick or something. I had never experienced a feeling like it before. I was standing then some how ended up on the ground but I am not sure if I lost consciousness. It was a very confusing experience. My dad heard me fall when he was sleeping and came to ask what happened. I had no idea what had happened though. Ever since then though when I feel that feeling I immediately sit or lay down somewhere and close my eyes. So maybe a complex partial seizure?

I have my MRI scheduled for next week so I will definitely give him a call after he gets the results. Maybe then he can have a better idea of what direction this is all going in. I think the main question I have is how sure is he that I am experiencing brain seizures? Or what will rule it out or confirm it? My EEG isn't for two months so hopefully he can settle my nerves after the MRI on what path we are on.

I have no idea what he meant! Does one usually remember convulsions if they occur? I mean I have no idea what kind of seizures he is thinking about. He asked me if I ever wake up with my cheeks or tongue bitten but I don't. I do sometimes wake up with my teeth really sore. Like even the lightest touch to them is very painful. I didn't tell him this though, is that something worth mentioning? I am so new to this that I am not sure what is relevant and what is not. Thank you for your support! It is a very scary experience. Like the idea I could have been having brain seizures for this long and even possibly in my sleep.

 

[Katiered]

It is definitely a scary idea, but it's good you're on here! Everyone has helped me so much through my diagnosis! Keep asking questions/venting/talking and you'll get through it!

And yeah, tell your doctor about your teeth. You could just be grinding, but you don't know. Share everything. I figure its better to say too much and let them take what's relevant than to hold back. I didn't tell anyone what was going on for years, and it turns out I was hiding seizures from my doctors. Honesty is now my policy. Take your dad maybe too if he can expand on what happens during. Maybe there's something he's witnessed you can't describe or remember, my doctor always asks questions of my boyfriend I wouldn't think to ask in preparation for my appointments.

 

[BrandiBrat]

Blurred, it's also a good idea to start writing things down. Keeping a seizure diary that you can bring with you when you visit your Dr. is helpful. I bring one of my parents with me or my daughter, but I also take my seizure diary to show my neurologist. It describes anything out of the ordinary, seizures that correspond with my menstrual cycle, mornings that I wake up with unexplained bruises (I wander), seizure clusters, etc. My memory isn't the greatest but when it's written down I can just hand it over to my Dr. and she can read it and have an idea of any changes.

 

[Blurred]

Thank you all so much for all the advice and support! I will take all of your ideas.

I will start writing things down and tell the doctor everything. I am scared of being diagnosed with seizures if I don't have them. Or if I do being diagnosed with the wrong kind. It isn't like I don't trust the doctor because I do. He picked up on that something could be wrong after so many other doctors dismissed it. I just don't want to accidentally say something irrelevant/etc and mess the process up? I can only hope that the EEG can give the doctor some idea if it is brain seizures and if it is, where they are occurring.

I had to contact the neurologist today because my psychologist and I were talking about trying Wellbutrin before all of this popped up. Then I was reading the side effects and it said people with epilepsy/seizures should avoid it because at certain doses it can cause seizures at certain doses or something? So I haven't been diagnosed with anything but I am not sure if it is still okay to take given he is testing me for that. I would normally just wait to start it until after the testing, but I am not getting the EEG for two months. Which is a long time to wait to start it if there is no reason to wait.

It is nice to vent about all of this. Makes it all a lot easier to deal with.

 

[BrandiBrat]

Good thinking on the Wellbutrin and way to think ahead! See, you're already taking care of business! Really, better safe than sorry I wish your EEG was closer than 2 months....that is going to be a long two months. Until then, try and take it easy. Gets lots of rest. I have found that my triggers are when I don't get enough sleep, when I get over-stressed, and when I drink alcohol. Which is a real bummer because I used to party a lot. haha

 

[BrandiBrat]

Hey, I graduated to "Weaving the community fabric" **taking a bow**

 

[Blurred]

I want to do all I can to avoid another experience if it is a brain seizure! Before the experiences were always unpleasant and I never wanted to experience them again. I never thought they were possibly something serious though. Which adds an element of fright to them now. So I am definitely following the better be safe than sorry motto from now on! I wish it was closer too! It was the first night and day appointment they had. From my understanding it is the narcolepsy sleep test but that narcolepsy is just an afterthought to the doctor. That maybe I have narcolepsy or narcolepsy and brain seizures but he thinks it sounds like brain seizures. He wants to use the sleep study to get the EEG that he needs for brain seizures. Hopefully since I will be hooked up to an EEG for almost twenty four hours the doctor will get a good idea if I have brain seizures or not. My MRI is next week, hopefully it will come back normal. That would remove a lot of stress about this entire thing. I haven't personally noticed any triggers. I also though never really paid attention for those kind of triggers though. I am going to watch out for your triggers though so thank you for sharing. Being in college the watching out for alcohol as a possible trigger though is a bummer! lol For you is it any drinking of alcohol or a certain amount of alcohol?

 

[Nakamova]

Alcohol isn't a trigger for me (mine are low blood sugar, aspartame, fatigue), but it can be for other folks. Usually it has to do with over-indulging, rather than moderate drinking, but since everyone has a different threshold, "moderate" is an indefinite term. Folks on anti-seizure meds, have to drink less than they might be used to, since the meds lower the tolerance to alcohol.

A great article about the topic can be found here: http://www.epilepsy.com/epilepsy/provoke_alcohol

I hope your MRI comes back clear -- keep us posted.

BTW, from here on out, you can just call them seizures -- "brain seizures" is redundant, trust me...

 

[BrandiBrat]

The E god doesn't want me drinking at all, one drink and the ride begins. But its ok, once I learned I gave it up. It twice for me to figure it out. I'm a bit of a low learner when I enjoy doing something haha.
I also hope your MRI comes back normal, but it does not rule out E if it does. Have a wonderful weekend, Blurred

 

[Blurred]

Thank you both! I will call them seizures from now on. I hope you both had wonderful weekends!

What typically rules out seizures? Apparently now that there is the possibility that I have seizures my psychiatrist cannot prescribe ADD medications anymore! Either I have to get seizures ruled out or be put on medication for them in order for her to prescribe medication. My sleep study with EEG isn't for two months. Then after that more testing may be required. I called the sleep doctor/epilepsy specialist's office but they won't order an EEG before the sleep study. Can anyone offer any advice? Should I try to set up an appointment with a different neurologist? Going to the sleep appointment was supposed to improve the function of my life...not decrease the function for who knows how long. So right now I am really frustrated and confused as to what I can do.

 

[BrandiBrat]

Hi Blurred, I hope that your Easter was nice! I'm sorry to hear that you are having a frustrating time and I do understand it. It can be really frustrating navigating through it all. If you have insurance coverage and have the ability to choose another neurologist without going through the referral system it wouldn't hurt to see if you can get an earlier appt. for a EEG closer. 2 months is a long time when you are not feeling well. My seizures occur at night when I am having them in clusters and when they do, I wander around my house in the middle of the night (in an unconscious state of mind). That means my body doesn't sleep, which means I am exhausted during the day. It sounds a lot like what you are describing (minus the wandering part). If so, I can understand why you would not want to go another 2 months feeling the way you do.
That being said, if you have the ability to get an earlier EEG I might explore that option.

 

[Katiered]

Hey blurred, sorry its such a challenging time! I know it can be really frustrating, and beyond confusing!

Just to clarify - you have your sleep EEG scheduled for 2 months from now, and this was because your sleep specialist who you deal with because of possible narcolepsy also has a great deal of knowledge regarding epilepsy and saw some signs and was concerned? You're worried about not having an EEG booked sooner than two months and are wondering if you should be calling around for an earlier apt?

They are really overbooked, I was told for MRI that there were always cancellations but that for EEG I'd be lucky if they didn't cancel me! I had to wait, but it goes quicker than you think. Just try not to focus on it, and it will be over before you know it.

Ruling it out.. As far as I understand - since they don't need any activity actually shown on an EEG they may need to actually attribute the symptoms to something else (eg. Narcolepsy) to rule out seizures. howver, you can have a seizure without having epilepsy. And you can have seizures with a physical reason for it (non-epileptic seizures). So it's not that you necessarily do or don't have seizures, but maybe there's an underlying reason for them that if resolved could stop them. (Such as for me, they are currently investigating the possibility of hormone imbalance causing them. If you google non-epileptic seizures it even lists narcolepsy as a cause).

I can't imagine how hard it is having to change your meds, but I do know its hard to change up medication... And to sit and wait. But we are here to wait and vent with. But honestly, it goes a lot quicker than it feels like it ever could right now! No harm in calling their office though and explaining your situation with your psychiatrist and asking if there's a cancellation list, or a way to get bumped up!

 

[Blurred]

Thank you both so much!

I hope your Easter was nice as well! Thank you for letting me vent! Do you feel exhausted physically and mentally? Or just physically? After I updated my sleep doctor/neurologist called me back personally! So that was a nice touch. He didn't know my sleep study wasn't scheduled for two months and thought that was a long time. So he put me on a priority wait list for cancelled appointments to try to get me in sooner. He also said I can be prescribed medications by my psychiatrist but not Wellbutrin. I just have to stop any medications a week prior to the sleep study. Apparently there was some communication misunderstanding between the sleep clinic and my psychiatrist's office. He answered and explained the questions that I had. So I feel a lot better about everything.

The priority wait list worked because I got a call today about a cancelled night and day sleep study. So my MRI is today and my sleep study is next week! After the sleep study the neurologist said I might need to stay in the hospital for a few days to be monitored.

To answer your question Katiered, my sleep doctor just happens to be an epilepsy specialist. He splits his time between the sleep clinic and a neurology office for epilepsy. I wrote on the sleep questionnaire I filled out about my experiences which might be why someone in the office selected him as my doctor. Or it could have been by chance, I have no idea. On the sleep questionnaire pretty much the only checked boxes were in the narcolepsy category which is why I thought that could be what I have. My first and only appointment was at the end of March with him. That is when we talked about my sleepiness and I told him about my experiences. Then at the end of the appointment he said it sounded like seizures. He never said he thinks it is narcolepsy but that is a possibility I would assume. So he scheduled the narcolepsy sleep study which is a day and night one. Then he is adding extra EEG electrodes to monitor for seizures as well. I don't mind waiting, I just thought I would have to stop my medication for two months while I waited. Which would have been a huge inconvenience.

 

[Katiered]

That's incredible! I'm so glad it worked out so soon!! And it sounds like you not only lucked out by getting a neurologist, but one who cares enough to call you personally! Load off your mind, I'm sure! And much less mucking with your meds over the next bit!

You'll keep us in the loop I hope!

 

[Nakamova]

That's great blurred -- keep us posted on how things go with the tests.

 

[BrandiBrat]

Blurred, I'm so happy you got the attention you deserve! And, my fingers are crossed that you find the answers you need to find out what's going on in your sleep. To answer your question, when my sleep is disturbed I am tired mentally and physically. I'm just "blah".
I hope it all goes well for you!! Keep us all posted!! BIG HUGS!!