I Hate Pills

I Hate Pills #epilepsy #rant #blog

Jul 11th, 2012

Another Update 9/15: Neuro was correct, I was overmedicated. Night meds were causing night tonic-clonics, and when I dropped those I went back to sleeping less, but feeling more rested. Go figure. I’m not doing more meds, however. Instead, I’m doing mo’ yoga and working out more, in addition to finding other ways to destress. It’s working, because I’m not feeling off in the afternoons anymore. Net analysis: pills still suck and alternative treatments help when other methods fail for resistant epilepsy. And oh yeah, Me: 1, Epilepsy: 0 — because that’s how the score is always going to read.

Update: I saw my neuro about a week after I posted this. She thinks I’m overmedicated, which is profoundly hilarious. So I’m getting an EEG to test for that hypothesis. If so, she’ll drop the night med she added, and then we’ll try something else. So yes, another drugs on the horizon, most likely. *sigh* Well, keep your fingers crossed. For…something.

***

I still hate pills. I despise them. I am so over every single last fucking one of them.

Yeah, this is one of those blogs. Feel free to skip it. In fact I almost didn’t post it. I’m not whining. I’m not wallowing. I’m just hating.

Yesterday I had not one, but two accidents. Both my bad. I hit a parked car (honestly, how hard is that?). I rear-ended car in stop-and-go traffic. Both times I was confused, wondering, what? How the hell did that happen?

Yeah. Welcome to absence seizures. Or call them petit mals if you will. Call them the things my fucking pill cocktails are supposed to be managing.

Although I hate the pills I count them out twice daily and take them as a sacrament, knowing they are essential to my continued functioning. Knowing without them my brain would slowly destroy itself, seizure by seizure, unchecked. They’ve been working. Why they aren’t…well, I’m assuming it’s my stress level. Take the situation over my father’s health (he’s dying and at the hospice level now, I’ve been in the health advocate position) plus a pile of other stress factors I won’t enumerate here. It’s just the load factor.

I hate my dependence on the meds. I have anaphylaxis reactions to four major seizure drugs out of the top thirty or so used to treat epilepsy, and this removes entire classes of potential drugs as options. I.e. since I reacted to one, I’ll likely react to it’s sister drug, so it’s off my option list. Aren’t I special? I despise how my seizures are difficult to manage. Thus, I get more pills, a complex cocktail.

On a recent visit my neurologist proclaimed my insomnia too risky and in need of treatment. I couldn’t disagree, but I cringed. I got more pills. At least this time I didn’t spend days trying to itch my skin off, the first try worked. Total win! Surprisingly, my body not only accepted the med, but required a ridiculously high dose stop the night seizures. Again, WIN! Wait, huh?

Sadly, the joke’s on me. I’m still a borderline insomniac, but the nightly seizure-prone states are gone. Win? Even better, when I awaken in the morning I’m dizzy as hell, have slurred speech, and have the memory and vocabulary of a gnat. If you didn’t know you’d think I’d been out on a bender by how I stumble about in the morning. It takes a good twenty minutes or more for my brain to kick into gear.

Yeah sure, some of you are already senile or drink yourself silly nightly, so this doesn’t sound weird to you. Whatever. I was used to more, and this is a rant. Let me have at it.

Unfortunately the high levels of the new drug make the big drug less tolerant for me, and again all food tastes like blood or iron. And sometimes it’s like I’m chewing on blades, not that it matters, I suppose. The neuro has explained that my facial nerve gets all tweaked out on this big med, thus the all food is metal/blood reaction. I have no idea how I manage to maintain weight with this combination, but it’s darkly amusing overall. If I were a vampire then food tasting like blood would totally work out for me, but this is the really real world, and I’m not. Boo.

So yes, I’ll count out the cocktail of prescription pills and the handful of vitamins my brain needs without question. And I’ll feel like an uncoordinated imbecile every morning. Yes, just hand over the pills. Go ahead. But I’ll still rail against the bonds which tie me to these side effects. Just because it’s necessary, just because I accept it, just because I’m grateful I have a solution, I don’t have to like it.

So yeah, I hate pills. Don’t ask me to be happy about it. What I want is a cure. Not more fucking pills.

Yet I have to go back to my neuro again, and likely there will be more pills, more side effects. Imagine the look of joy upon my face at this prospect.

I’m over it. I’m headed to yoga. I did it years ago and loved it and was super mellow then. I’ve also heard good reports from other individuals with epilepsy that yoga helps them delay and/or prevent seizures altogether. Yeah, perhaps it sounds like I’m grasping at straws. Or in this case, stretched out toes. But I’m learning I can’t rely on medications and vitamins for my seizure control. Sure, they help, but they aren’t a 100% solution.

I’m tired of waiting for a solution. I’m going to make my own.

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Tags: absence seizures, epilepsy, i hate pills, My love-hate relationship with pills, petil mal epilepsy, pills fucking suck, rant, yoga

14 Responses to "I Hate Pills #epilepsy #rant #blog" {+}

Steven Montano on July 11, 2012 Reply

+100 to everything in this post.

I feel for you, Hon. My daughter is off to see her neurologist today. We’re going to look at some different meds, because hers make her a complete space cadet, and she’s sick of it.

I hope yoga helps. We totally understand your hatred for “the pills”.
- Candice Bundy on July 11, 2012 Reply
  
  Thanks Steven, and give her a hug from me. Space cadet is it’s own sickness. Sometimes the cure is questionable compared to the disorder, especially when the pills don’t give 100% relief. I know the docs are frustrated too, it’s not like the medicines available work well for all patients, or even consistently across the board.
  
  I’ll do an update in a while on the yoga. I doubt I’ll ever be free of pills, but I’m realizing they aren’t the 100% solution.
Kelly Said on July 11, 2012 Reply

Oh Candice, wow, you face so many struggles on a daily basis, I’m sorry things have been so stressful for you lately. Hang in there! I know it’s not much, but I’m sending my best thoughts that things will start improving for you. *hugs*
- Candice Bundy on July 11, 2012 Reply
  
  Thank you very much Kelly! You know it doesn’t feel like much until it all boils over. I know things will calm back down, it’s just a matter of time, and poor timing. Thanks for your kind thoughts and *hugs* back!
James Crawford on July 11, 2012 Reply

I wanted to respond to your post, but find I’m ill equipped to do an eloquent job of it. I feel for you, as depression/ADD require me to pill myself in order to approach what is considered to be “normal”. Some days I’m grateful that there is a treatment that works, and other days I’m resentful as creamy hell about it.

I don’t know if you’ve looked into acupuncture as a potential avenue for relief, but it might be worth a look.

As far as things with your father: I wish you both peace and as much comfort as can be had in such a painful situation. May you always have what you need.

-J
- Candice Bundy on July 13, 2012 Reply
  
  I feel for you James, and I’m glad meds give you a measure of comfort. Acupuncture is a definite option. I’ll look into it.
  
  Thanks also for the thoughts on my father. He’s a very upbeat man, despite the situation.
Amber on July 12, 2012 Reply

Ugh. I am so sorry. I’m not in your situation, so I can’t pretend to understand, but I am more than willing to listen to you rant about it.

I hope yoga or acupuncture or any other avenue you choose to try helps in some way.
- Candice Bundy on July 13, 2012 Reply
  
  Thanks, Amber, you’re a darling! I’ve had some good alternative therapies recommended, including QEEG biofeedback now too. Interesting stuff! I have faith changes will come. Perhaps not as quickly as I’d like, but I’ll get there.
Christopher Mackay on July 12, 2012 Reply

This does not sound like much fun at all.

Don’t know what else to say other than we’re all pulling for you.
- Candice Bundy on July 13, 2012 Reply
  
  Thank you Christopher! You’re an awesome person!
Liberty on July 12, 2012 Reply

(hugs) I hope the yoga helps, even if only your stress level. I couldn’t get the girl to try yoga if my hair was on fire. LOL The girl had sleep issues as well, but I think its better now. It’s always something. Hang in there. Rant all you want! =D
- Candice Bundy on July 13, 2012 Reply
  
  *hugs!* Thanks Libs! My sleep is oddly under control, it’s the stress. But I’m taking active steps, versus just hoping it won’t be a problem anymore. (Cause yeah, that didn’t work so well.) Yay, rants!
christina on July 25, 2012 Reply

I relate so much to your struggle! I find half the problem with RTLE is that it is sooo subjective. Add stress into the mix and noone knows what is what (symptom wise). I am trying to come to terms with the fact that I will be the only person who understands what is going on with my mind/body. Btw, I am convinced that stress lowers the seizure threshold. We already have electrical currents in the RTL, stress (or any major emotional response) would just aggrivate that electricity. On the bright side, we experience the ‘normal world’ but get an extra insight added with RTLE – some kind of higher consciousness – which is kinda cool
- Candice Bundy on August 14, 2012 Reply
  
  Christina, I agree with you! Stress + RTLE = more seizures. It’s a simple equation. And I’m unclear how you get around in life without more stress? LOL And yes, the insights from TLE are often wonderful, I just try and not think about the collateral damage. Thanks for your comment, and I wish you luck. RTLE is a bumpy road.