Diary of an Epileptic

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Yeah, I'm putting off going to the ER. I just puked, and I think there may have been blood in it. but I ate some red M&Ms but I dont know. I know I should be going, but I dont want to. I always wait till things get worse. its something i just do. because I am so scared of hospitals and so scared of needles and blood. I avoid it if I can. I also have a very upset stomach now, but I think that its because I think there is blood in there, and it makes me nauseas to think that. bt I also do not want to puke again to check.

:( not sure what to do.
 
I told Scott about what you're experiencing right now, and he said he knows how you feel. He HATES going to the doctor and will avoid it until it can't wait any longer (believe me, we've had fights over this) He says though, if there's one time you should go, it's now.
 
Rae...

GO!!!!!!!!!


...please?

If I were anywhere near you, my midget self would drag you, kicking and screaming, if necessary. I feel that strongly that you need to see a doctor at this point - and there are not words for how much I despise seeing doctors myself. :/
 
:agree::agree::agree::agree::agree::agree:


I'm guessing Chad will also :agree:
 
Okay, so I tried to post an update like 40 times, but each time I logged in, i had to go do something else, or someone called etc etc.

So yes, I went. not under my own free will though. Yes you were right. Chad dragged me kicking and screaming to the hospital. Turns out that I was puking blood, red eyes, tummy cramps, and burning skin were all from my meds. my serum levels jump around alot. its like my body decides to absorb it all normally one week, then the next week it super absorbs, and the the next it under absorbs. They are now going to figure out why that is.

I know i miss my doses at the proper times alot, and on occasion missed all together. I have also taken my morning dose twice by accident when I couldnt remember if I already took it. They seem to think that its something my body does naturally. like it normally selectively absorbs things. including vitamins and minerals. I have been told so many times that my iron levels are low and that i should do "yada yada" to fix it. but I never did, and when I go get it checked again, it seems to be fine.

So the meds have a "drying" effect on me. like my eyes dried out which caused the redness, my skin was dry, so it burned like hell *I have never had dry skin, and this was not flaky or anything. just felt like sunburn, tight and burny* and the tummy ache was from swallowing blood.
It turns out that it also dries out the inside of my nasal cavity, so that's why I got those random nose bleeds *still not sure why the complez partial followed* so it also dried it out at the top of the nose so it wasnt something that a kleenex easily stopped. when I was sleeping, it would bleed and I would just swallow it. blood in my tummy upset it and that made me yucky. then when I barfed, I realized it was there.
So they gave me some fluid IV to stop the drying effect for now. and cauterize the bloody nose culprit *OMG!!!!!!!! So painful!* I asked why they wanted to put a rubber bite stick in my mouth, because I told them nothing should be there if I have a seizure, and I didnt feel like I was going to have one. they said its because it muffles the screaming a bit. *No. I was still loud.*

So they told me basicaly to go home and keep taking my meds as per usual and drink more. if this "side effect" becomes intolerable at this dose, then they may need to change me to a new med, or lower the dose and add a second med. Luckily it was not "THE RASH!!!" but I still would have waited longer to go if I could have. But Chad had to be the jerk and drag me.

Argh. Im tired. and I honestly havent taken my meds all day. they didnt give me my 9am dose, until they knew it wasnt "THE RASH!!!" so I also didnt take it at 9pm. just didnt feel like it. I know *again* that I am not showing a very good example in here, but maybe if someone realizes that I am acknowledging my stupid behaviour as irresponsible, then they wouldnt do it. Some times I think being a bad example is a deterrent for others. That being said, I feel phenomenal without them!

So far... I could have that "super absorption" in my body, and won't notice until tomorrow. so in one day, I went from 150mg Lamictal + 25mg Lamotrigine (I had left over that I decided to finish before getting more) twice a day, to none. at all. and I dont feel a thing. I think that if I *or they* decide to keep me on this, then I will go back to generic. The problems only got worse once I took the brand name. maybe a reaction to another binder?
 
Chad's not being a jerk (I know it feels that way), he's dragging you to the doctor because he loves you. *hug* (but you can tell Chad I said :woot: for dragging you :D)

I forget all the time if I took my morning meds or not. What I have started to do to help remind me that I have is to move the pill bottle. In the morning, after I take them, I put the bottle on the left side of the bathroom counter so that I can easily look and see: pill bottle on the left of the counter means I took them, pill bottle on the right side (where I leave it at night) means I haven't taken it yet. If it's more than 4 hours after I should have taken it, I skip the dose and simply take the next dose so I am not "doubling up" on doses. My friend Kris (who, oddly enough, lives a couple thousand miles away, haha) calls, e-mails, or texts me within about a two hour window most days to remind me to take the morning dose, too, because I have a horrible habit of forgetting to take them.

I am glad you went, though. Horrible experience that it was, with a reaction like that, playing it safe is always a good idea in my opinion.
 
I really dislike this side effect. And didn't really notice it until the dose increased. I still feel poopy. The skin around my ears still burns, as does my neck a bit.
Last night I tried a muscle relaxant rub to see if that would work too. Loosen the skin and the cooling type effect. We used to use RubA535, until we read an article that it is possible to overdose on this and die. So I found Motrin Active works amazing. Better than anything else I tried.

No tonic clonics yet. So if I make it through today....no...WHEN I make it through today, I'll be at the 2 week mark again. It feels like when I'm going about my daily life normal weeks go by super fast, 2 weeks are a breeze. But 2 seizure free weeks seems to take forever.
 
*i was going to leave this out, and I find it embarrassing information, but its still information, and I share everything in a diary*

So the drying effect didn't just effect what I mentioned. I have lovely long finger nails. *except when I got to play my guitar or violin* and the are strong enough that I can open pop cans with them. But they also started to snap and crack and I didn't realize that this was a side effect.

The embarrassing part is that it also dried out the "downstairs" *sorry if that's crossing the line a little Bernard* so I learned the hard way that we should now keep a small bottle of lube near the side table. So its also all of the downstairs area. To th point where it was a little uncomfortable to sit down or walk without wearing a satin thong, because the fabric touched and didn't glide nice. *ps, I hate thongs. I'm still a fan on the cotton boy short, mini boxers or... The granny panty. Not the high wayed ones though* so I should have realized once I was moving through my thong collection real fast.

There are always subtle hints that happen that just seem so mundane, that you don't fit the pieces together until the picture is almost done.
 
I'm glad Chad took you. It''s better that you went and knew for sure. COming from a support person's perspective, the stress of seeing your other suffering, and worrying that it could be fatal, is unlike anything in the world. When Scott was on gabapentin, I cried every day, several times a day, and my work suffered, my other relationships suffered, because he was being as stubborn about continuing it, as you were about not going to the hospital. It's not just your health and well-being that's at stake when these things happen.

I'm sorry the brand name has been so horrible for you. I feel awful about that, since we were the ones who changed Scott to brand name, and he started doing better on it.
 
I'm glad you got dragged to the ER and got a handle on things Rae, and are feeling somewhat better. I'm sure it was no fun, but the relief factor's got to be huge. I'm certainly relieved! It would be great to figure out why your metabolism swings so much. If you can go the route of having 5 to 6 small meals a day, that might help. (I know, that's not easy.) With the absorption issues you are having, would the extended release of Lamictal work any better?

I hate the side effects of Lamictal too, and they're not even that bad for me. When I went on it my doc wanted me at 300mg/day, but I stopped at 250, then tapered down to 200, and, because I can't leave well enough alone, I'm seeing how things go at 175. BTW, this is not something I'm recommending for other folks; I'm doing it because I like to play Medication Limbo (how low can I go) in the hope of fewer side effects. Since this is the dry season, here are my helpful hints for what it's worth: Humidifiers and indoor plants. Eyedrops. Looooooong showers that turn my bathroom into a rainforest climate zone...

I really really really hope you continue to steer clear of tonic-clonics. My fingers are crossed, despite how hard it is to type :)
 
Yeah I do have that almost releif feeling. but at the same time I have that "see I told you it was nothing" feeling. My nose kills, and I sound like I have cotton balls and marshmallows shoved up as far as they can go. breathing through it hurts.

I want to play the limbo game too. except I think that I am playing more like a dare devil. Do it all at once, risk it all, and if it works GREAT! if not, someone please have the fire extinguisher ready and yell for me to Stop, Drop, and Roll.

Thats the word I was looking for, Metabolism. I have always had a strange metabolism. When I was 12, at 75lbs, I could eat more than my dad's 26 year old friend who was 6'3" and about 250lbs. then when I was 16 at 95-100lbs, I could eat so much more. and I always felt hungry. After taking the dep needle that pushed me to 150lbs at 18. *I am back down to about 130ish* i can still eat what I want and I dont gain, but losing it all is hard. I only want 15 to 20 more pounds gone.

I eat small things all day, but I dont like eating breakfast, and most days Im too busy at work to recognize that Im hungry at lunch time. so by the time i'm off, I either have a hunger headache, or that feeling where your so hungry you could faint or puke.

on weekends I wake up at 9am just to my stomach growling sometimes, and already have the puky feeling. if I dont eat every few hours, even something small, I feel sick and shakey and faint. I am very active on the weekends, and after work. but during the day I just sit at my desk and answer the parts phone or enter stuff, so my metabolism isnt working as hard. But when I do something active, it seems like my metabolism goes into overdrive.
 
Hooked on a feeling

I have that "worry" again. constantly. its driving me batty! I feel like burstining into tears but have no reason for it. I wanna go home, curl up with chad and nap.

i jus tk dont feel good tofay at all. and im not even sure why. bummer
 
Could it be your Lamictal?

Anxiety, confusion, depression, irritability, or other mood or mental changes; continuous, uncontrolled back and forth and/or rolling eye movements

http://bipolar.about.com/cs/sfx/a/sfx_lamictal.htm

I've found that many of my meds had emotional side-effects. It seemed that just knowing that specific emotions were a side-effect made them easier to deal with.

Recently I've started to notice specific emotions before a seizure (sadly they're good feelings). Watch for patterns in your emotions & your seizures. You might discover something.
 
Well I havent taken them in almos 4 days. So i dont think its that.
How long does this stay in your system until is compplety goen?
 
Well I havent taken them in almos 4 days.

Could that be the reason you're feeling the way you do? I hope you didn't stop taking them cold turkey.

Also your spelling is worse than normal, is that indicative that you've had a seizure or that you're close to having one?
 
Yeah i just stopped. they made me msiss my 9am does on sunday and i skipped my 9pm dose. and then just havent taken tehm since. i have that ;i dont fel liek it" attiude and its freeing to nto be chaiend to the botle.
 
I bet it feels freeing, but your typos are increasing dramatically again. Take care of yourself.
 
I know how freeing it is not have to deal with meds, but I worry that you'll be vulnerable now that you've stopped cold turkey. Please be very careful, okay?
 
Thanks for your concern everybody. Yeah. I was typing just before having to go home from work and then signed off. I went to go make sure the guys were set up for their meeting last night and I think I had a drop seizure. I dont think that I ever had one that I conciously know of. I have fallen, and fainted, and am a huge clutz, but this was differem.

I was lifting the coffee urn *which was about a quarter full of hot coffee* and just went down. Kinds felt like I started the act in automatic, but then just dropped. My knees and hip hurts. And I scalded the palms of my hand from pushing my self back up and touching the hot spilled coffee.
I don't think I've ever had one. I did this infront of a huge meeting of street sweeper buyers from a few different city offices and the reps from Alianz Madvac. I couldn't do anything but sit there mortified, so I balled.
Had everyone at my aid within 2 seconds seeing if I was okay.

I felt sick to my stomach and everything feels a bit weak after. I was so glad chad was there only 2 minutes after. TodayI am back on the meds full force. That was too scary for my liking, although I'm sad because I'll miss myself too
 
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