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So afraid I'm making this up : (

Soooo 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 : (

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. 

Re: So afraid I'm making this up : (

I know EXACTLY how you feel. I felt that way at first when I was 17. I thought I was just being crazy and didn't want to talk to anyone about it.. I have 3 different kinds of seizures and what you are describing is exactly what I go through. Your body functions, "the lights are on but no one's home", and you find yourself in the middle of doing something else, and you are like hmm.. what?? You are not alone :) What I would do is start making note of your sleep patterns and diet. Are you not getting enough sleep? Are you eating trash food or healthy food? Is your diet high in carbs? Are you under stress? These are all things that can have an effect on seizures. I suffered through high school with these types of seizures and was too embarrassed to describe it to anyone to get help. I would listen to the neurologist but still consider other options as well..

Re: So afraid I'm making this up : (

Thank you all for your comments and encouragement! I actually went to the neuro last week and took your advice, tparrent. I tried not to focus on seizures and just described everything I was feeling. she did not think I was having a migraine after I described everything to her in detail. I still think I am though once or twice a year though. She believes I have a couple different types of seizures right now but would not give details until after more testing. I had an MRI Friday morning and received a call from my neuro at 7:30 that night. Apparently I have a tumor on my pituitary gland that might be causing a few of my symptoms, but she believes the seizures are unrelated. So I'm just special : ( She would not give me any details but said she'd call me today (Wednesday) and I have an appointment on Friday to discuss what to do next.

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 : (

I haven't replied but have kept track of the posts.  Good luck on Friday, and I hope you will continue to update everyone here.