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Someone

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Hello, everyone.

I hope someone wouldn't mind answering a few questions for me. I'll try a brief history first: I am twenty three, about to be twenty four. I am a mother of a three year old little girl. I am also married. I was in the military. I was discharged for bipolar, though I got a second opinion (with a therapist) who suspects DID (due to some family history). Anyway, I'm wondering if I should see a neurologist along with my therapist, because these signs and symptoms seem more like small seizures than anything psychological.

I also became suspicious of seizures when both my mother and sister started talking about their experiences. Can seizures be hereditary?

Okay, this is what I've been experiencing for years, and how it's steadily getting worse:

-'night terrors' since very early childhood. I'll be on the cusp of sleep, or waking, and suddenly be held down/grabbed/pulled viciously. I'll hallucinate. I'll feel tremendous fear/panic. Sometimes, I can move certain parts of my body, but only in a jerking movement and my speech is pretty slurred when I can speak. I'm completely conscious. Lately, I can tell when they'll start. I'll lay down and within a few minutes my legs and arms will tingle, which will progress throughout my body, which I will immediately feel panic and try to fight. I end up twitching, I remember a bit of whatever I happen to hallucinate (auditory/visual/sensory or a combo of all three, if I'm really lucky..), then I immediately fall asleep (or, on rare occasions, 'wake' myself up, stumble around a bit until I can turn on the TV). This is what my sister and mother have experienced all their lives as well.

-Passing out. Whenever I would get a fever (only about four times growing up), I would almost always black out. When asked about my blackouts at the ER, I would try to explain that I felt somewhat conscious and my siblings or parents would explain that I slap the ground with either my legs or arms, mumble incoherently, but am completely out. Then, right after the 'spell' has worn off, I sit up mumbling some more and crying, then immediately head to bed. No one mentioned seizures at all, so I didn't think anything of it. I also did this after getting blood drawn once. Same symptoms, including what I call the 'tunnel eyes'. The tunnel eyes happen right beforehand every time. They look almost like when you press your eyes really really hard (the very bright dancing lights), but in the shape of ovals and they start in the center of my vision. They grow, and as they eclipse my sight completely, I lose my sense of hearing, then my touch, then I feel my legs go, and I'm usually fighting it at this point because I'm completely panicking and terrified.

-Deja Vu. My friends in high school used to think I was psychic or something because I would always be exclaiming how often I was experiencing deja vu. At first it was kind of cool, but then it turned into an every other day experience (a little exaggeration, but that's what it felt like). I started trying to ignore it, but it was hard when my mind would race and I would feel very anxious. Now, I just try to remind myself that Deja Vu is basically a brain skip, and that everything will be fine in a few moments.

-Time loss. Then, there was this time in the military that still scares me to think about. My entire squadron was heading to a mandatory meeting. I remember being happy and laughing as I walked to the door. I held the door open for everyone, making jokes. Then, I remember the door closing behind me and me wondering where the hell everyone in the shop went. I didn't want to catch a damned plane by myself! So I sat at the table until a coworker came in (about fifteen minutes later) and asked me why I wasn't at the meeting. I stared at him blankly, then it suddenly hit me that I couldn't remember anything after laughing at the door. Freaking out, nauseous, I started badgering him for information with questions like "did you see me leave? Did I say anything? Did I go anywhere? Was I acting funny?". When everyone returned, I asked every single one of my coworkers. They thought it was hilarious, but really couldn't remember what I had done. This was what prompted me to go to medical, and eventually ended at a bipolar diagnosis and discharge.

-Sudden anxiety attacks. These usually happen quickly, severely, and then dissipate just as quick. I explained them to the psychologist in the military as feeling as if I left the stove on and went on vacation, or left my kid in the car on a hot day. They were typically brief, but some could last for quite a while. I could be sitting, reading quietly, and suddenly have to stand up and pace to help alleviate the panic. My thoughts will shift to someone dying, car accident...just plain 'omg what if this happened?!' thoughts that are irrational to whats actually going on.

-eyeball spasms. I've been ignoring these lately as much as I can. I'll be reading or looking at something when suddenly, my eyes will move back and forth very rapidly and I have to blink a few times to get them to refocus. I've been to about three eye doctors, and my eyes are perfectly fine.

-left eyelid spasms. This has only started recently. The bottom portion of my left eyelid will spasm for up to thirty minutes at times, less at other times. Its highly annoying, but I didn't think there would be anything to worry about.

-Electricity on my head. I've always had this where it will feel as if someone took an electrified balloon and gently passed it over the right side of my head. My scalp will tingle like crazy for a few seconds. This happens often.

-Smelling 'cold'. Usually tagged with the electricity feeling is what I dubbed 'smelling cold'. If you've ever walked outside on a very cold winter morning and breathed in through your (still nice and warm) nose, it's that weird feeling that I'm talking about. The first cold breath through a warm nose. There's no other way to really explain it.

-Can't understand language. I've had tons of moments where I simply can't understand someone. I've been called 'weird' in the military for this. They'll talk, and I'll hear some ancient language. I'll have to ask quite a few times for them to repeat themselves before I finally understand, though I've learned to ask only twice now and, unless it's something extremely important, just nodding and smiling.

-Heart race, can't breathe. I contemplate sometimes if I'm having a heart attack. I'm panicking, my shoulders seize up, my chest hurts, I feel like I cannot catch my breath at all, and I get angry. The first time I went to the hospital, they did an EKG which came out normal, I was mortified, so I went home and suffered in silence. I still suffer in silence.

A few other things: I've been diagnosed with cluster headaches and migraines. I stare off quite a bit, though I never noticed until my husband mentioned it. Driving scares me, because it's very hard for me to remember if a light was red or green when I passed under it, or even where I was at times. It seems like I am constantly fatigued; there have been days where I've slept over eighteen hours. I went to the doctor after a day of guzzling liquids like there was no tomorrow, because I was terribly thirsty, but I was apparently fine. I have a habit of grinding my teeth, rubbing my nose, rocking, and going very, very still for what seems like no reason as well.


Oh my goodness. If you read all of this, then I thank you from the bottom of my heart. I can apparently write a book. What do you think? Should I bring up seizures with my doctor?
 
Hi Someone, welcome to CWE!

I think it never hurts to bring things up with you doctor! And in your case, your symptoms that could certainly be neurological in origin, so it's important to rule that in or out. We have CWE members who have DID and epilepsy, and there is some research that indicates that there can be a connection between the two.

Anxiety, migraines, and seizures can overlap, and/or produce similar symptoms to the ones you describe, but the passing out, deja vu, time loss, eyeball spasms, loss of language comprehension, and staring spells tend to suggest a seizure disorder in particular. Your fatigue can be both a consequence of and a trigger for your symptoms, so it would be great if you could see a neurologist and have a sleep study done as well.

Best,
Nakamova
 
Thank you for your response! :)

My husband thinks I'm looking too much into this, because I don't shake. That, and I have an issue with the bipolar 1 (with psychosis) diagnosis, so he thinks I'm trying to find an alternate diagnosis. As much as this angers me (to be invalidated), could he be right? Personally, I believe the bipolar diagnosis is wrong because no amount of medication worked, and half of the symptoms did not fit with what I was going through. The military psychiatrist told me the time loss, loss of language comp, staring spells, racing thoughts, hallucinations, etc were simply psychosis. It didn't matter how many times I told him I knew the loss of language wasn't normal or that the hallucinations weren't real.

I sincerely hate going to doctors and having them take a look at my record, see the bipolar diagnosis, and then immediately write me off as 'non-compliant' without listening to my issues. That's what happened at the hospital, and when I tried to tell my psychiatrist that I didn't entirely agree with him (he twisted around some of the things I was saying, like 'I get angry very quickly' to 'Oh, you experience anger for a long period of time?'. It drove me nuts.).

My current DID therapist is a social worker, so I'm not sure how she'll react if I bring up possible seizures. I have medical records indicating a bout of meningitis as a child, extremely high fevers, chronic ear infections, two separate pneumonia bouts, a head injury (fell down the stairs as a kid and split my eyelid open after falling off the toilet), blood sepsis, tons of ER visits for migraines (with aura, but some without cranial pressure in my eyes so they thought I was lying), and un-explainable stomach issues since childhood.

The psychosis is long winded and was the most severe immediately following the lost time in the military. I was suicidal, extremely detached (depersonalization and dissociation), my thoughts were repetitive at times (the word 'suicide' was like this weird mantra that I couldn't stop) and just plain rapid at other times, the world around me just felt 'wrong', etc.

Some of the hallucinations: 'bugs' (dark, small shapes) would zip around the walls and tables from my periphery vision, I couldn't go into my dressing room because I had the impression that a dark shadowy man was in there that wanted to hurt me (even though I knew there wasn't, the fear was overwhelming), things that were perfectly stationary would sway (such as my very small plastic Christmas tree would sway as if I was trying to look at it through desert heat), at work the walls would 'breathe' (It was subtle, but they would bend in and out) and the door at the end of the hall looked like it was waaaay farther away than it should be. I would hear music when there was none, be tapped or tugged lightly when no one was around, my name would be called, I would hear tinkling noises, muffled conversations from another room when no one was there and the TV would be off. There was even one time when I was trying to take a nap in my car before work (I got there early) and saw a man approaching my car from the mirror. I sat up as he reached for the mirror and smiled (I could see him pretty clearly), but when I turned to smile and ask what he wanted, there was no one there.

So, as you can see, there's a lot going on that I have no explanation for and that neither bipolar nor DID really fits. All that happened around January of last year and the hallucinations tapered down after about four weeks. The bipolar meds made things worse, so we experimented until I finally said I had enough, most of the meds made day to day living unbearable. The ones that really were terrible and did nothing were the Depakote and Seroquel.

There are more symptoms I could list out, but I think I've written enough. ;P

So, my question is this: How do you bring this up with a doctor who may just look at you like you are crazy or non-compliant? Should I even give it a try? I'd love to figure out whats wrong with me.
 
You can reassure your husband that the majority of seizure disorders don't involve grand mals (convulsions and loss of consciousness), and that the other kinds of seizure disorders don't necessarily involve shaking or twitching.

It is possible to have both bipolar disorder and epilepsy, and epilepsy can occasionally produce psychosis. In addition, some of the medications used for treating seizures (like Depakote, Neurontin, and Lamictal) are also used to treat bipolar. So that may make things complicated, both in terms of diagnosis and treatment.

Nevertheless, I think it would be beneficial for you to try and see a neurologist (preferably an epileptologist). A neurologist would evaluate your symptoms, and perhaps schedule tests like and MRI or vEEG. If any of those tests come up positive for epilepsy that will make things clearer. (Unfortunately, many seizure disorders don't always show up on the tests, but that's a whole 'nother issue).

Be persistent! It can be very frustrating, but it's worth it if you end up getting proper care and treatment.

You may be interested in the following links. They relate to epilepsy and DID.
http://www.coping-with-epilepsy.com...epilepsy-dissociative-identity-disorder-8461/
http://www.ncbi.nlm.nih.gov/pubmed/10842446
http://priory.com/psych/did.htm
 
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