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Possible Epilepsy? HELP NEEDED ( Long )

post #1 of 9
Thread Starter 

Hello Everyone. I really hope this is the right place for posting this topic. Im going to go ahead and apologize for the length of this post and if its a bit hard to follow- some of this is very hard to put into words, but I will do the best that I can. I really need some advice, as this could be a very serious situation for myself. YES, I know that I need to get into the neurologist ASAP and I plan on doing that, but at the moment money is very tight. And YES, I fully understand that it wasn't very wise on my part to put this issue off- but I have because I guess I always felt other issues with my children or DH was 'more important'. Moving on..


While I was pregnant with my second child ( over 4 years ago ) I experienced something that I never had before: A migraine 'aura'. It was in my left eye and faded out after about 30 minutes, with a period of maybe 30 seconds where I was pretty much blind in that eye ( everything was blurry and it was impossible for me to focus on what I was looking at), During this I had NO pain, sickness, dizziness- nothing but the aura. It happened a few more times, but I really wasn't that concerned since there was no pain or other symptoms. I wrote it off as a simply migraine due to pregnancy hormones. I also had an unassisted pregnancy and didn't want to 'draw attention' to that by going on a visit to a doctor.


After my son was born, all of that subsided and didn't happen again. About 2 whole years later, as I was sitting on the front porch talking with DH- I suddenly had a very strange feeling come over me. Its very hard to describe: I felt 'out of body', tingly, and my thinking seemed to slow way down. DH was talking away, not aware that I was feeling any of this. I noticed that when I tried to respond to him in conversation, it was very difficult for me. My speech seemed slightly slurred and thought I could understand what he was saying, it was hard for to me really grasp it ( if that makes much sense). It was also difficult for me to find the words to respond, though I knew what I wanted to say. It was scary and lasted maybe 20-30 minutes total before I was back to normal, though I did note afterwards that I felt very tired and simply drained. This experience shook me up and I began doing research right away- the most I could find was information about strokes or TIAs. Much of what I had experienced did match many of those symptoms, but much of it did not. I had no negative long lasting effects from this 'episode' ( other than having the crap scared out of me ).


After that episode, I would notice at times that I would begin to feel 'strange' and get a touch of the scary, 'out of body' feeling but it wouldn't progress any further other than me shutting down for fear of it doing so. I also noticed that certain things seemed to trigger these episodes. For example, If someone would be talking to me and use alot of repeat words such as 'ya know' or 'um', it would trigger one of these episodes and ( and this is the strangest one of all ) if someone points out to me that I forgot something ( Hannah, you forgot X!) or even 'Hannah, you already said that..' it will also trigger this. The majority of the time, they are not 'full blown', I just begin to feel very strange and out of body and maybe have a difficult time finishing my sentence. They also tend to happen most often when I am talking to someone ( especially if I'm excited ) and I begin to pay close attention to my own voice, or 'how' I'm talking- and suddenly Ill have a massive 'brain fart,' as DH would say, and cannot remember for the life of me what the heck I was talking about in the first place and sometimes this also leads to me repeating myself a few times- which is also very odd. These episodes can also be triggered by others talking as well.


Anywho- a little over a year ago my DH lost his job on the same day that we where experiencing some pretty nasty weather here in GA with the main issue being tornadoes- which I am absolutely terrified of thanks to a very scary event when I was a child. In other words: I WAS SUPER STRESSED. I began having another major episode that lasted all day, complete with me repeating sentences, difficulty finding words and a very very strong 'out of body' sensation and even some very mild hallucinations ( stayed on my front steps calling my cat for atleast 5 minutes before I relized it was actually a small bush )- but there was no aura, no pain. This episode continued on into the night before I called my mother and told her that I was scared and wanted to go to the ER while DH stayed home with the kids. She took me to the ER where the doctor also pointed out that my pupils where unevenly dilated ( one was much smaller than the other )  and sent me back for a CT ( CAT?) scan which turned out to be perfectly normal. The doctor also helped me to notice that I often have quite a bit of blurriness or a small aura in my left eye in the mornings when I wake up- I also recalled, from his conversation, noticing myself that my pupils tend to be unevenly dilated when I first wake up and stay that way for atleast 1-2 hours after waking. The doctor suggested that I was having a severe 'silent' migraine, sent me home with migraine medication ( one dosage ) and then gave me a lecture about getting to the neurologist as soon as I can to really figure out what this could be.

This episode continued to last then slowly fade over the next 2 whole days- the migraine medication didn't help.


Up until this past weekend, I have had no more major episodes like that one. I will have what I call 'mini episodes' maybe 2-3 times a week at the MOST and they only last 30 seconds to 3 minutes at the most, have no aura, no pain and only the 'out of body', scary feeling is present and then suddenly they stop before progressing any farther. However, last Friday I was in Panama with my kids, DH and his family for a 3 day family vacation. I was feeling well, no issues ( other than maybe a little more stress than normal ). We went out to eat together at a restaurant and as we where all setting down I started to feel a bit drained, but thought nothing of it since I hadn't  gotten much sleep the night before. Suddenly, as I was ordering my food ( in mid conversation) I began to feel that strange, creepy 'out of body' feeling along with a bit of a tingling sensation. Everything around me seemed to change, yet stay the same. When people would attempt to talk to me, I would hear what they said- expect altered slightly ( Example: My SIL asked if I wanted an Advil- I heard her say abalone. It made since in my head since we where all having sea food. ) I tried to stay calm, ride it out and act normal. At one point, I 'come to' with a family member tapping my arm because the waitress was back, asking me questions and apparently I was just staring into space, which I had no knowledge/ awareness of. Once this happened, it seemed to make it worse-the very fact that I looked over at this family member and could see that she noticed I was 'out of it' made it progress- kind of like how when someone points out that I've repeated myself or I've forgotten something triggers it. The last thing I wanted was to mention how I felt and then everyone freak out and insist that I was having a stroke and rush me to the ER in a strange place. It eventually progressed to the point of me asking DH to take me and the kids back to the place that we where all sharing just so I wouldn't have to be around everyone and talk to anyone ( which always feels like it makes it worse). I ended up taking some Advil migraine and crying myself to sleep for a 2 hour nap. Even when we had made it back to the room, everything still seemed 'different' or altered slightly in some way that I couldn't put my finger on. These episodes are so strange- its very difficult to describe how I feel during them. After I woke up, I felt much better, not normal at all and very drained, but atleast felt like I could function and carry on a short conversation without fear.


I'm very aware that stress is also a huge trigger for these episodes. It almost seems that just sitting down and thinking about them long enough will trigger one. And stress definitely will cause the episode to progress- but that's unavoidable because the moment I feel that strange, out of body, almost indescribable feeling it scares me, and of course, I become very stressed and start worrying about how I must look while this is happening, whats going to happen next, and I'm really hearing people correctly, do I look/sound insane, etc. It really does make me question my sanity during and afterwards and is nothing short of totally bizarre and terrifying.


I was talking with a friend on FB who mentioned what I'm feeling sounds alot like an epileptic seizure. At first I was thinking 'no, it couldn't be that.' but after a bit of research I am starting to ask the same thing myself. I really just want answers. Along with my anxiety issues, this strange mystery illness makes me feel trapped in  my own body. I'm afraid to to go out, go on trips- even a trip grocery shopping can be scary. I cant remember the last time that I was really, truly able to relax and have fun.


In case you're wondering: I am 24 years old, eat good, work out. Really fairly healthy.


If you've read this- THANK YOU from the bottom of my heart. ANY advice or BTDT stories would be so so very comforting to me right now. Since what happened this past weekend, its all I've been able to think about and I feel like I'm having to consciously put in effort NOT to have another episode. I'm sure alot of that is the stress/fear talking, but that's truly how I feel and its exhausting. 


I will be going to the neurologist as soon as I possibly can ( hopefully by the beginning of next month ) but until then, I would love some comforting advice or ideas. If I didn't explain something clearly enough ( its very hard to do with this situation ) please let me know and Ill clear it up the best that I can for you.


Hope to hear from someone very soon.


Thank you so much for your time.


Big hugs to all of you. XXXXXX

post #2 of 9
I get migraines with aura, but not a lot of what you're talking about. I think it's more neurological than a mental health issue though, and I'm worried you might not get as much response here as in the larger Health and Healing forum. I can more this there if you want. Just let me know. smile.gif

To me, it does sound like you should see a neurologist. Some of what you're talking about even sounds like it could be hormonal or something. Maybe start with a general practitioner and see what she/he thinks.

Best wishes and I hope you get an answer to what's causing this!
post #3 of 9
First of all, huge hugs to you. It sounds terrifying! These episodes have many commonalities with my DH's mini seizures.
Three things:
1) yes, please make the neurologist your TOP priority even if you need financial help to do so.
2) stop driving immediately if you do drive until this can be diagnosed, treated and brought under control. (DH had one of his while driving... Scary!)
3) if possible, get help with the kids, even if that's just lots of playdates or whatever so in case you have a bigger episode, you're not alone with them and another adult can take care of them while you recover.

I'm not saying any of this to scare you but if you take precautions then the fear of another episode should at least be less intense because you won't worry about your kids being unsafe.

Now on to my DH. For a few years he had what he'd describe as panic attacks. His pulse would start racing, his left arm would be throbbing, he'd feel disoriented and couldn't respond to questions or remember how to do routine tasks (like signal a turn while driving). An episode would last up to a minute or so, then he would be disoriented and "fuzzy" for a few minutes and then he'd be himself again. He saw his family dr who basically offered counseling as stress was his big trigger and told him to try to take it easy/relax. He'd have one when work was stressful and nothing for months so he basically didn't worry much. Then we had our baby girl and spent three nights in the hospital, trying to sleep in shifts (DD had stopped breathing twice at random so we agreed that she needed to be watched 24 hours a day until this issue passed). This was major sleep deprivation for both of us and the night we came home, DH had a massive seizure. Now it looked NOTHING like I thought an epileptic seizure would look like. Baby was asleep and I heard moans so I went to check on DH. He was on the bed, moving his arms and legs around, sort of looking like he was swimming. I called his name, shook him by the shoulder, and got no response. After a few attempts and getting nowhere, I called 911. While talking to dispatch, he suddenly sat up and started walking, perfectly coordinated and not clumsy at all. I yelled his name, tried to make eye contact but his stare was completely hollow; he didn't see or hear me. It was what sleepwalking must look like. I managed to keep him away from the nursery and he walked into the spare bedroom and climbed up on the desk like a cat, then after moving around up there for a minute or two he turned on his back and started panting, like he just ran a marathon. I made the decision to run downstairs and unlock the front door (a busted door was a headache I wanted to avoid) and as I sprinted back up the stairs, I heard a big crash - he fell off the desk. The paramedics were there a minute or two later and one asked me questions while the other started assessing him and tried to get him to respond. They were able to get him to walk down the stairs and on to the gurney. I called my MIL and ran to the ER as soon as she arrived to watch DD. He was conscious but confused and had forgotten recent events - had no recollection of the seizure or becoming a dad. It took about 45 minutes of me walking him through it for him to start remembering the birth! After his dislocated shoulder was fixed, he was discharged after a few hours and his cognitive functions and memory were back to normal. He was sent to a neurologist who sent him for an MRI and an EEG. He had a small "panic attack" episode during the EEG and that was picked up as a small localized seizure. His MRI showed a lesion on his right temporal lobe and we were referred to a research neurologist specializing in unusual seizures/epilepsy. He was very reassuring and said it was simply something DH was born with and that sleep deprivation, stress and excessive alcohol use are the primary trigger. His symptoms of memory loss/confusion are due to the location of the lesion and would be different if the lesion was located elsewhere. THIS is what makes me think you may be suffering from the same type of epilepsy but localized to a different area (speech center maybe?). Anyways DH lost his license for 6 months, then it was reinstated since his neurologist sent a letter stating that his epilepsy is controlled very well with medication. DH hasn't had another large seizure since and he's taking a medication with little to no side effects. Occasionally he'll experience a moment of weirdness that signals he would have had a small seizure but it's a momentary feeling with zero confusion or other symptoms.

Sorry for writing a novel but I wanted to detail DH's case, diagnosis, and current outcome. What really struck a chord with your description is how it looks sort of seizure-ey but not really. Please try hard to be seen ASAP and in the meantime get lots of sleep and take precautions so an unexpected seizure doesn't put your LO's in a dangerous situation. I know DH and I to this day thank our lucky stars that his "big one" came at night in bed and not while he was at work or driving! hug.gif

ETA: he later described that during his big seizure he thought he was taking a walk on the street he grew up on in the fall. He didn't see me, furniture, walls, nothing. Don't know if that is relevant but there it is.
post #4 of 9

That all sound so scary!  I don't know if this is totally a crazy thing to mention, but I just watched a TV show (like a medical/neurological detective thing) where a woman had "Alice in Wonderland" syndrome.  Her hallmark symptoms were episodes with primarily visual hallucinations where everything seemed completely unreal and surreal- which I know isn't exactly like yours- but it seemed to have some similarities.  Anyway, the underlying problem was a twist on migraines, and she was treated successfully with migraine meds.


Good luck...

post #5 of 9
Originally Posted by skycheattraffic View Post

First of all, huge hugs to you. It sounds terrifying! 
Three things:
1) yes, please make the neurologist your TOP priority even if you need financial help to do so.
2) stop driving immediately if you do drive until this can be diagnosed, treated and brought under control. (DH had one of his while driving... Scary!)
3) if possible, get help with the kids, even if that's just lots of playdates or whatever so in case you have a bigger episode, you're not alone with them and another adult can take care of them while you recover.

I'm not saying any of this to scare you but if you take precautions then the fear of another episode should at least be less intense because you won't worry about your kids being unsafe.

Yes to all of this!


One caution is that when you see the neurologist (and any other physician or specialist) is to stick to describing the symptoms.  Don't volunteer any history of stress or anxiety.  Sadly too many doctors jump to errant conclusions (eg "oh it's just stress.  Or oh, here's an RX for some ativan for anxiety", etc).  Dont let them brush off the medical aspect of this.  Stress/anxiety happen to other people all the time and they don't always have medical problems from it. 


So if it was me, I'd try to go into the app't calm, confident and just objectively describe your symptoms without giving them reason to believe the underlying cause is anxiety/stress.   certainly stress can exacerbate existing problems (or make them more apparent)- but it's not a cop-out diagnosis.   Write down a detailed description of symptoms to give to the doc, and a list of questions.      I am hoping you have a neurologist who will do a thorough medical workup, labs, tests, xrays, etc to rule out TIA's, MS, etc.  I hope for your sake it's just migraines, but your descriptions have a seizure-like feel to it.  The experience you describe is what it felt like to me when I was just starting to regain consciousness after the seizures I used to have (a form of epilepsy I grew out of).


CT scans do not generally show evidence of TIA's.  They generally don't even show full blown show strokes right away unless it's a bleeding type of stroke.  MRI's will give more info. EEG's will document brain waves....but often the brain waves are normal when not having seizure activity - so one can actually still be having seizures , but just not while they have the EEG done.  So often the neurologist will try to recreate the conditions that can bring on the seizure activity (eg strobe lights, etc)


I hope I make sense (trying to type with baby nursing...).


Good luck - hope you see the neurologist soon....

post #6 of 9
Thread Starter 

Thank you all so very much for your responses. Sorry I haven't responded sooner- I've been super busy!


Mamazee- Thanks for your reply and YES if you think that I will possibly get more responses there, feel free to move this post to that forum. Thanks for that suggestion!


Skycheattraffic- Wow! That sounds like a very scary experience for both you and DH. That must have been very intense and overwhelming. Thank you for sharing your story with me. I will be getting to the neurologist sooner than I had originally planned. I will be making some calls Monday, and hopefully I can be seen next week sometime.


As sad as this may sound, I actually RARELY drive anyways- even when I'm feeling well. Ever since the first episode that I experienced, I just havent done it because since stress is a trigger for me ( and driving really gets my anxiety going ) I've decided that it would be much safer to allow DH ( or my mother when needed ) to be my/ the LOs shofer for awhile.


Luckily, my mother doesn't live that far away and she knows all about whats been going on with me. She doesn't work, so shes always home if I ever need to give her a call to watch the kids until I feel better.


My episodes are very, very scary and I feel like my life is being controlled and that I'm trapped in my own body/mind. They have a very seizure-like feeling to me as well and I'm always terrified to think that I might, one day, have one that is very 'out of control', much like your DH experienced. It also tends to make me question my own sanity at time.. I think that's the most frighting part of this whole issue!


Chefmir- Thank you for responding. It's so funny that you mentioned the 'Alice in Wonderland' syndrome because I was actually searching my symptoms and doing a bit more research when I come across that myself. I did look into it, and I have to agree, what I am experiencing has alot in common with that syndrome.


Dotl-  I was thinking the very same thing: NOT to bring up anything involving my anxiety with any doctor that I discuss this with. I have a feeling that it will be blown off as 'stress' when I know in my heart that it IS NOT simply stress. This may sound a bit funny, but while I'm experiencing these episodes I can actually 'feel' my brain misfiring is some way. It just doesn't 'feel right' up there.


When my appointment time comes, I will definitely be requesting many test, and if she/he declines or tries to write it off, I will find a new neurologist right away who will listen to my suggestions and how I feel. I just hope that I can find the words to describe the strange feelings that occur with these episodes enough to help the doctors know where to start. It's so very hard for me to put into words the 'other worldly' feeling that comes along with these. I have also went ahead a written a detailed ( almost 2 pages long! ) note to take with me to my visit to help me remember and to make sure I leave out NO details.


It does scare me a bit and make me quite anxious to know that the neurologist will try to 'trigger' on of these episodes that that he can detect my brain activity on the scan. They're so scary that I don't even want to think about having another one- especially in a public place, surrounded by people. When these happen I always tend to recluse myself into a bed or bathroom and 'wait it out'. But atleast I will be surrounded by professionals who will know how to respond if my episode progresses or gets out of hand. Not to mention, I would go through just about anything right now to find some answers and the right medication to help me start to live my life again. Thank you for your advice!

post #7 of 9
I'm so sorry you're going through this! For what it's worth, when my husband gets a migraine he had some of those symptoms before the migraine pain hits. First, he gets the aura, then he has problems speaking and gets really wierd feeling. Also, there was a video going around of a woman reporter who was speaking to the camera when suddenly she broke into total jibberish. Turned out she had a migraine. It sounds a lot like what you are speaking of.

Good luck at the doc. Sending healing vibes your way >>>>>>>>>>>
post #8 of 9
Originally Posted by HuntressMother View Post

Thank you all so very much for your responses. Sorry I haven't responded sooner- I've been super busy!

Mamazee- Thanks for your reply and YES if you think that I will possibly get more responses there, feel free to move this post to that forum. Thanks for that suggestion!

OK I did move it because, while you've had some great responses, I think it fits Health and Healing better than Mental Health and that, therefore, you'll get more responses in this forum.
post #9 of 9
I'm so glad to hear that you're planning to visit a specialist very soon and that you have the support you need!
I agree with dot1 not to go the anxiety angle as much as possible and I think you have a very solid plan in moving forward. Taking notes in so you don't forget anything will be very helpful. Definitely don't let anyone brush this under the rug; it's impacting your quality of life and daily activities in a major way. Please post an update when you can. It may be a long road but many people find relief with the right medication. What you said about questioning yourself and being scared hit close to home. DH had very similar feelings and it wasn't until we saw the epilepsy specialist many weeks later that he finally found some peace with the situation. Please take good care of yourself hug.gif
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