It’s also potentially a bit scary.  For one reason, I’ll have to be checking my calendar.

I couldn’t understand why I was verging on a panic attack yesterday while going to my pharmacy.  It’s only about a 15 minute walk away.  I don’t get panic attacks so I’m not even sure if what happened would even qualify.  From what others have said, maybe? Probably? Well, let’s try and describe it and see if it “qualifies.”

Heart Racing, Dizzy, Overwhelming Nervousness (Anxiety?) Fear (just a little, but odd, vague.)  Wanting to just run; get my meds and race home (why I did not know, some sense of comfort at home?) I think that’s all.  Yes? I kind of think that fits some criteria.  Yes?

Also, in terms of “thinking” I’m beyond extremely fogged today.  This post is long, so please excuse that, and any extraneous material because of “foggy brain.”  Although, “foggy brain” is part of why this explains everything!

There were some other things that seemed pretty strange yesterday, apart from the panic.  When I was out, the sun seemed almost blinding! I’ve had issues with the sun before, even though I have lenses that darken when exposed to sunlight.  Well, not much help there.

sun + panic = fear of having one big, wham-bam seizure, right in front of everyone passing by. Yes, I honestly was that concerned.

I have had a couple of seizures involving a huge surge of panic as part of a Simple partial.  Afterward, it’s moved on to something else.  The worst event was first the panic, then more of my “regular” Simple partial tricks.  Following that, I had significantly altered consciousness, loss of muscle tone in a few areas of my body, however, such extreme myoclonic jerking in the vast majority of the rest, I fell off a bench outside, despite leaning on a wall behind me.  I got a good bonk on the bean with that one.

That’s a bit scary (not the seizure–yesterday.)   Going for a short walk in my own neighbourhood to a familiar place, getting all panicky and then worrying about having a seizure.  I don’t get panic attacks so no need for anxiety about them coming on, and I never worry about having a seizure occur–anytime, any place, whatever.

As soon as I got home, a Valium/Diazepam immediately shoved straight down my throat! It didn’t exactly work, though.  I needed a second one in the evening, because I felt like I was becoming completely unhinged.   I was going absolutely mad!

For example: Issues in my life bothering me, somehow became magnified.  When I was watching TV trying to relax, I was seeing things everywhere in shows that had commonalities with the aforementioned, magnified problems! I beg your pardon? Most assuredly, there is only one reason for all of this.  I am clearly, unquestionably, certifiably: insane.

Now THAT’S a bit scary!!!

At that point, time for the heavy artillery.  Gravol/Dimenhydrinate.  Even THAT wasn’t helping! Then, something occurred at the speed of light.  I really needed the Gravol.  Massive waves of nausea started crashing into me, over me, under me, through me, you name it.  Oh, no.  Do a quick “light check.”  Oh, no no no!!!  Run to the bathroom and pop another pill.

It worked for the pain as I caught it fast enough, but this has been my worst migraine prodrome yet! Prodromes for migraines last anywhere from hours to days.  Even another “warning sign” in that I’ve been unusually headachy recently with pain in my neck.  I just wrote them off as tension headaches.  I always miss my prodromes because they either happen too fast or I interpret the signs and symptoms as something else!

So.  How do I “interpret” this? I’ve never had a prodrome that has made me turn into some kind of deranged, berserk, lunatic! Furthermore, one that needs 24/7 monitoring and administration of five Antipsychotics, plus placed in restraints!

Postdrome? I don’t have a clue because what is really killing me (and did last night!) is the nausea.  It’s relentless.  It just won’t go away, even with the Gravol!!! The Gravol is definitely working on my head as I think I’m floating somewhere around Jupiter at this point.  Physiologically it’s working in other ways.  I’m all stumbly bumbly and Wonder Cane or my spare is nearby (you never know!) So far, only water and tea are going into me.

This nausea is a bit scary.  Okay, maybe not scary but just way too over the top!

Wait a sec’.  Moods are off.  Other things, too.  Shades of post-“ick”tal©? Going back to the seizures I could have been skipping along with them, as well.  The very strong possibility of NCSE for me.  Non-convulsive Status Epilepticus.  NCSE + me = I don’t know I’m seizing–until some weird kind of post-“ick”tal© stuff comes marching through the door?

Is this a bit scary? Oh, whatever.  All of this is known so what’s the point.  Not a bit scary.

More “a bit scary?” More than a bit scary! Catamenial Migraines.  Please, please no.  I believe I’m due to get my period any moment now.  That’s “Catamenial.”  During your period/cycle.  There are also Catamenial Seizures.  Oh, dear.  “Catamenial NCSE?” *would roll eyes but too painful*

The Catamenial Migraines actually fall under some of the signs/symptoms of being perimenopausal.  I don’t know if I’m perimenopausal or not, but a few things on the lists are looking highly suspicious.

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  1. I’m not the one to tell you you’re not crazy because I some of the same/simular issues going on! Between 1 and 5 simple partials a day that make me super paranoid and I see things that aren’t there. So yes…I get it! The meds don’t work. Let me know if you find something that does!

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  2. Hi kellyquirks. Nice to meet you and welcome.

    Epilepsy is a pain in the ass, isn’t it? Or better put, pain in the head? Well, until or unless you become post-“ick”tal© Then it’s a pain everywhere!

    That many SPs a day. Charming. Not that it’s the “Epilepsy Olympics” or anything, but at least I don’t seize every day. Nor do I get paranoid. Not fun, either.

    Although, I might be seizing every day with the NCSE. If so (since I have no clue) maybe they’re just not bad enough to make me post-“ick”tal©!

    I shouldn’t joke but I do poke fun at myself all the time. For me, it’s essential just to get through things. Not that it always works, but it may lighten the load somewhat.

    I’ve had SPs with the psychic component, but rarely do they involve any emotions. The two panics, three gelastics with laughing (but they’re in a class all their own!) My favourite was when I believed I was a form of Artificial Intelligence. I kid you not!

    It was AWESOME!!! I had no issues with it at all. I felt totally comfortable in my altered reality of being a form of AI. Well, it actually was reality–at the time. I looked in the mirror and I wasn’t me. I may have looked like me, but I was too wrapped up in being Data from Star Trek.

    What meds have you tried? I’m on Topamax/Topiramate and Lamictal/Lamotrigine, but they also work for the Bipolar. I’m not sure if they do anything for migraine prophylaxis. I tried Tegretol/Carbamazepine but it did nothing.

    Right now? We’re just sitting as is. My brain is just too complicated with all of my comorbidities, and my cocktail is pretty significant. Based upon that, titrations only. Swapping anything out wouldn’t make a difference. I don’t think so.

    However, I will say we just titrated my Lamictal up to 300mg a day from 200mg. After that was done, I had no seizures for two months (excluding anything that might be NCSE.) That’s a record for me over the last couple of years!

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  3. Yes! Always a pain in something. And I make fun of myself too. It helps me get by. My doctors really have no idea what to do with me. I did an ambulatory EEG at the beginning of September and it didn’t register any of the simple partials…but they continue to treat them as such. So in reality they could be something different. But all the symtoms are there. I have grand-mal siezures as well…not regularly now, but I take topamax and keppra for those. I recently tried Vimpat for the simple partials and that didn’t work. I’ve been on Lyrica for a week now and it’s not working either. As a teen I ran through half the drugs on the market looking for one that would work for me for the grand-mal siezures, so I’m running out of options! You said you are on Lamictal…I tried that one years ago but had bad side effects. Serious rash I think. Tegratol too…side effects. I don’t even know if drugs are the answerr for me now. There must be something else!

    Fingers crossed for more answers in epilepsy sience.

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  4. Hi kellyquirks. Thanks for coming back and giving me some more information. I checked out your blog and saw the pic of you with the ambulatory too, by the way. Loved it!

    I’ve never done one since, as you now know, not regularly enough to warrant. I was scheduled for a VEEG but for some reason, they never followed up and I didn’t get a call. *shrug* I suspect they wouldn’t have found anything, anyway.

    That’s just it with EEGs, isn’t it? Unbelievably unreliable. I laugh so hard at these medical shows on television where they seemingly, magically always capture someone having a seizure during an EEG. Please!

    I always tell everyone not to have a grand flip out re: Lamictal and “The Rash!” True, SJS is life threatening, but only if it goes untreated and you feel like you’re sick as a dog with symptoms like an infection. Otherwise, step back with the dose, slow it down and try again. If you’re still having problems, fine. Not the med for you.

    Again, Dr. PA is not a real M.D. However, the first time she tried Lamictal, crazy rash everywhere. Although, no issues like having some kind of virus or anything. Therefore, load up on antihistamines, rash gone. Now, Dr. PA tolerates it just fine.

    I had to look up Vimpat as I didn’t know that one. Very interesting drug. Only as an adjunct, though! That’s pretty important! Also, only fitting under circumstances like yours. I can see why they went in that direction due to its mechanism of action–and that’s definitely why it’s only an adjunct! It wouldn’t do squat on its own. Well, perhaps for diabetics! *laughing*

    Ditto Lyrica? Well, perhaps. Except it may have more success as monotherapy for people with Fibromyalgia! Lyrica is the “new and improved” Gabapentin, don’t you know.

    Gabapentin never really had such a great track record (even though we’re all different.) It always seemed so far down the list, and was rarely used as first line treatment. Again, adjunct?

    I mean, it’s not a bad drug. It works where it basically “needs to” but I’ve always called into question its particular mechanism of action and if it’s enough to do the job.

    It sounds like the Topamax and Keppra are at least doing something for the tonic-clonics. A reduction is better than nothing? Considering you have tolerance issues, at least you could manage the Keppra. Well, hey! The Topamax, as well!

    Topamax can be a hit or miss drug. Mechanism of action, again. No one can be sure of this stuff, but it’s widely accepted that it hits your temporal lobe–it’s a major focal point where it works–specifically amygdala. Due to that fact, as far as epilepsy, it may be rather selective. However, due to that fact, it’s widely prescribed off-label for other things. Like Bipolar. Topamax is awesome for me!

    Okay, Dr. PA will shut up about meds and pharmacology now. And yes, let’s keep the epilepsy science and research going!

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  5. Interesting to hear about Lamictal…may be worth going back and giving it another try. I was in my teens then too…so I’m sure my body would react differently to any drug no then it did then.

    Topamax…glad to hear that it works for you. And it does an ok job for me. They did try to increase my dose of that and it gave me a kidney stone. So on a nice low dose I’m fine.

    I’m constantly online researching the drugs ang other treatments. The internet has become a blessing and a curse because there is so much information out there. And like you said…we aren’t MD’s. But I know I’m constantly trying to diagnose myself. It’s so damn hard to get in touch with the actual doctors these days when you need them and it takes eons to make an appt.

    The next drug my Dr. said he wanted to try me on was Depakote. (if the Lyrica didn’t work) And well…it isn’t. And like you said, the Vimpat and Lyrica are really just add on drugs. We did have hope of maybe getting me off the Topamax if one of these worked. But well….
    I’m not keen on try Depakote…it has a bad rep. Plus I feel a bit like a lab rat at this point. (I’m sure you know the feeling) I might make my way to Johns Hopkins and see if the experts there can do anything for me…fingers crossed.

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  6. Hey again kellyquirks. You’re quick on the draw! I leave baby MacBook for a few minutes and hey! *grins*

    Sure, go ahead and try the Lamictal again! WHEE!

    I hear you on the “Lab Rat” thing. Did you see my Page at the top of my blog? I even called myself that! A lot of those meds are Antidepressants, though. I was mis-diagnosed with MDD instead of Bipolar way back. Now, if I take any ADs I go nuts. They make me cycle like crazy.

    Yes, kidney stones are another pain in the…kidney? *rolls eyes* Yep, another well known side effect of Topamax. Quel drag.

    Bingo on the Internet. I try to advise people to be really careful about it for several reasons. I don’t outright tell them to be wary of cyberchondria. Who the hell am I to judge? Read whatever you want! I just say that the quality of what you are reading may be a load of crap.

    Another thing I say is that if, IF you are thinking of bringing something to your doctor from the Internet, make sure they are amenable to that. Some of them can get pretty ornery if their egos are larger than the buildings that house their offices.

    If that’s a go, don’t bring in CRAP! Make sure the information isn’t from some Mickey Mouse website (well not literally Disney) but from reputable sources, Peer Reviewed Journal Articles etc…

    A lot of docs can be idiots, too. My team is really good, but it’s take me years to assemble them.

    As far as the Depakote, maybe try it, just take it in stride and say, “Ah, to hell with it! What have I got to lose?” After so many years now and seeing so many meds, so many heads, I don’t feel there is any drug that doesn’t have a bad reputation!

    There will always be side effects for someone, it will always work great for someone else, for others it won’t do a damn thing! I look back on my “Lab Rat” days and now I really don’t care. Perhaps it’s some kind of complacency with my current cocktail. That doesn’t mean I’m getting away scot-free. I’m still seizing, I’m still prone to cycling, my ADD still kicks me in the ass…

    Regardless, if I had to make further med changes, it wouldn’t bother me. In fact, not so long ago I tried to move from my current Seroquel/Quetiapine to an XR version. What a nightmare! I finally figured out why. Or at least I think so. It hits a different serotonin receptor of the 5HTs.

    That would be interesting to take a trip to John’s Hopkins. I want a fMRI! I want pretty pictures of my brain that I can hang up on my wall! Hmmm… Somehow I don’t think that’s going to happen. Non-Arsey Neuro totally rocks but even I don’t think I could talk him into that!

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