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So afraid I'm making this up : (
Sun, 10/13/2013 - 23:16Soooo I've been through just about everything and feeling hopeless. Comlex PTSD, undiagnosed seizures, etc. Recently what I thought were just strange anxiety attacks got worse and the ER doc tossed out the word "seizure". Since that morning everything has turned upsidedown and I'm feeling very alone with this waiting for my neurologist appt.
What happens is all of a sudden I'll feel like I'm being electrocuted. My thoughts will become uncontrollable and I'll feel like I'm dreaming. After some time the dream starts to fade and I never remember the event other than the start and the end. On Friday I had huge blackout moments after a bigger event. All of a sudden I was dressed and in my room and all I could remember was reaching for a towel, then nothing. I had a pounding headache as well. It took almost two hours for my vision to return to normal(right eye wouldn't focus) and my left side of my body to stop tingling in addition to the headache going away. Since then I've had what feels like auras. I'll feel really distant and tingly, in addition to starting to get a headache. Usually my left arm and leg will go numb as well. I'll catch myself staring and having difficulty reading and typing sentences. Sometimes a more minor event will happen with this (the feeling like I'm being electrocuted), then I'll getting a pounding headache for approximately a half hour in addition to feeling extremely exhausted. If I can, I'll fall asleep. All of a sudden it will all fade away then return again a few hours later. It even happens at night.
I'm so afraid I'm making this up and that the neurologist will just say there's nothing wrong. I'm trying my best to just ignore it and act like normal but it's hard. I'm just afraid and feeling very alone. These were really bad last year at this time (upwards of 6 a day) but got better so I only had a few a month.
Abby
Comments
Re: So afraid I'm making this up : (
Submitted by kayla_milligan88 on Wed, 2013-10-23 - 00:55
Re: So afraid I'm making this up : (
Submitted by jumpwhat on Wed, 2013-10-23 - 09:40
Kayla, I can also completely relate! I was too embarrassed to tell anyone until recently. I still struggle with it and have not told many people. I also tried last year to figure out a pattern, but it's hard because sometimes I can function and other times I shut down completely. It seems like I'll have a REALLY bad 8-9 days, then a slightly better 4-5. So I'm not sure if it is hormonal and somewhat related to the pituitary tumor? Other than that, it does not matter if I'm stressed or relaxing. I just finished my fall break yesterday and had upwards of 6 big ones a day for most of it. I also eat very healthy and exercise as often as I can. The seizures make me extremely tired so I've been sleeping a little more than usual (8-9 hours a night then an hour nap). If i'm sleep deprived, the following day is usually hell. Did you notice anything in particular that triggered yours?
Re: So afraid I'm making this up : (
Submitted by tparrent on Tue, 2013-10-15 - 05:08
I certainly don't think you are making this up!
There are a number of possible causes of the sypmtoms you describe and epilepsy is just one of them. What you described is also consistent with severe migraines. When I was younger, I had very similar symptoms and would sometimes get them in a cluster. In my case it was clear that I was having migraines and medications were ineffective. Fortunately, I learned over time what the main triggers were (primarily certian types of food) and I only have a few migraines a year now and they are much less severe than before. Some of my symptoms in addition to the ones you described were right side paralysis and disconnected speech patterns. Those certainly concerned me at the time and I had full workups but no underlying medical conditions were found.
By the way, I do not have epilepsy. (I am on the site becasue my son had severe epilepsy prior to brain surgery)
The symptoms you describe are, of course, concerning but please don't jump to any conclusions and, just as importantly, don't let your neurologist jump to conclusions either. Make sure that you have a full, detailed discussion with your doctor, examining ALL the possibilities. Some of them are scary and some not at all. It helps if you go in with no preconceived notions of what may be causing your symptoms. Thinking "seizure" before knowing what really happened can, unfortunately, narrow the discussion. At this stage you do not want to focus on any particular cause until you have more information.
Hopefully this note brings down your anxiety level just a bit. Listen closely to your neurologist and if you aren't satisfied with what you hear or the approach your doctor is taking, don't be afraid to find another.
Please keep us updated.
I certainly don't think you are making this up!
There are a number of possible causes of the sypmtoms you describe and epilepsy is just one of them. What you described is also consistent with severe migraines. When I was younger, I had very similar symptoms and would sometimes get them in a cluster. In my case it was clear that I was having migraines and medications were ineffective. Fortunately, I learned over time what the main triggers were (primarily certian types of food) and I only have a few migraines a year now and they are much less severe than before. Some of my symptoms in addition to the ones you described were right side paralysis and disconnected speech patterns. Those certainly concerned me at the time and I had full workups but no underlying medical conditions were found.
By the way, I do not have epilepsy. (I am on the site becasue my son had severe epilepsy prior to brain surgery)
The symptoms you describe are, of course, concerning but please don't jump to any conclusions and, just as importantly, don't let your neurologist jump to conclusions either. Make sure that you have a full, detailed discussion with your doctor, examining ALL the possibilities. Some of them are scary and some not at all. It helps if you go in with no preconceived notions of what may be causing your symptoms. Thinking "seizure" before knowing what really happened can, unfortunately, narrow the discussion. At this stage you do not want to focus on any particular cause until you have more information.
Hopefully this note brings down your anxiety level just a bit. Listen closely to your neurologist and if you aren't satisfied with what you hear or the approach your doctor is taking, don't be afraid to find another.
Please keep us updated.