Is it me or my meds?

[Koda1021]

Hello everyone! First off, thanks for having such a great community. I oftentimes feel quite alone in that those around me, while supportive, don't necessarily understand some of the things I am coping with.

I'm at a bit of a crossroads right now and not sure what to think of things. I had gone off meds for a while after my company switched to a high-deductible health plan (4k deductible). That wasn't good, as I immediately started having seizures again.

So, I'm back on insurance, high as it is, and back to a neurologist. He's an epileptoligist, and is a nice guy. So, I can't complain there.

Last year, he put me on Vimpat as it seems what I thought were auras were actually simple partials. I would also get tonic clonics at night but lots of simple partials during the day. The Vimpat did help, but I still was having auras so he added Briviact to it. At one point, I was at 100 mg. of Vimpat twice a day and 100 mg of Briviact twice a day.

A few weeks ago, I told him that I'd had 2 nightly seizures. Not as many auras, but 2 tonic clonics (between doctor visits). I also mentioned that I'm not sleeping well at all. I always wake up feeling like I didn't sleep well (vivid dreams, which I know is a side effect of Briviact).

So, he reduced my Briviact to 50 mg twice a day, and added in Fycompa. I was doing the titration sample pack so it started at 2 mg at bedtime and then eventually 4.

Since starting the Fycompa and especially getting up to the full 4 mg dose, the only way to describe how I feel is weird. I'm sleeping better, because I'm sleeping very heavy (no more vivid dreams) but now I'm truly exhausted ALL the time. I can sleep and sleep and sleep want to sleep more. The worse part, is that my mood has become horrible. I work from home, and have to sometimes hide in my office because I feel down and want to cry, and don't want my husband to see. At the same time, I'm furious at everything and everyone.

Work has been stressful for me the past few weeks. I'm in a support role, and am used to angry customers when something doesn't work like it should. These past 2 weeks, I've been prepping for a major server upgrade, and people were a lot angrier, my reactions were worse than usual. I couldn't shake things off like I normally do, and a few times I even considered quitting! Thursday and Friday were all-nighters for me getting the upgrade done, I know, not smart but it had to be done. I slept almost the entire day after that, and slept about 12 hours each day since, but am still exhausted and now I just feel out of it.

My income supports me, my husband (he nearly had a stroke last year and had to quit work) and my elderly mother. I had an infection a few weeks ago and my GP made me go to the hospital because he was concerned, and the hospital bill (low blood sodium) is now looming at 2k. Each of the 3 meds are about $700 each and thankfully the doctor is giving me samples because right now I just can't afford it. I've reached out to my company to see if I can sell my annual leave but the new policy doesn't allow for it. I don't qualify for any of the low cost med services and the savings cards did give me some relief but not that much (one med went from $850 to $675).

So, to say I'm stressed is an understatement. But are the meds making it worse? If so, do I approach this from a psychological perspective or a medical perspective? I know my epileptologist wants me to get to no seizures, but at what cost? (emotionally) I'm losing my temper quickly, feeling stressed then feeling sad. I've gained 90 lbs. to boot and feel hideous.

I would welcome thoughts on how others have maybe coped, and if maybe I need to view this from a different perspective.

Thanks in advance!

 

[Nakamova]

According to the Fycompa website, it can definitely cause or exacerbate mood-related problems:

Can FYCOMPA affect my mood and behavior?
FYCOMPA may cause mental (psychiatric) problems, including: new or worse aggressive behavior (including homicidal behavior), hostility, anger, anxiety, or irritability; being suspicious or distrustful (believing things that are not true); seeing objects or hearing things that are not there; confusion; difficulty with memory; other unusual or extreme changes in behavior or mood. Tell your healthcare provider right away if you have any new or worsening mental problems while taking FYCOMPA.

The most common sides effects listed are: "dizziness; sleepiness; tiredness; irritability."

So it sounds like the Fycompa is messing with you, and you may need to make a switch.
There are quite a few seizure meds out there -- talk to your neuro about what might make the most sense. Have you tried Lamictal/Lamotrigine? It has a reputation for fewer mood-related and cognitive side effects. (Everyone reacts differently of course.)

I hope your life gets less stressful soon, you deserve a break!

 

[Koda1021]

According to the Fycompa website, it can definitely cause or exacerbate mood-related problems:



The most common sides effects listed are: "dizziness; sleepiness; tiredness; irritability."

So it sounds like the Fycompa is messing with you, and you may need to make a switch.
There are quite a few seizure meds out there -- talk to your neuro about what might make the most sense. Have you tried Lamictal/Lamotrigine? It has a reputation for fewer mood-related and cognitive side effects. (Everyone reacts differently of course.)

I hope your life gets less stressful soon, you deserve a break!

Thanks for the kind words. I try so hard to not have my epilepsy define me or have people think of me as less able, that I tend to take on a lot. Because of that, I don't get as many people saying something simple like "you need a break"

I was actually on Lamictal for a few years. I was only diagnosed 10 years ago (right before I turned 40). At the time, they diagnosed it as Grey Matter Heterotopia. I did ok with the Lamictal, and the neuro at the time (I was in a different state) was good with it. But, I was having (what I thought were) auras all day long. It's only recently that with some of the meds geared towards simple partials that it looks like they weren't auras but actual simple partials. Plus, we kept going up in dosage and the seizures were getting worse, so the doctor thought either I'd become tolerant of it, or that the generic may not be serving me well.

I did see the side effects on the Fycompa site. I'd been on a low dose (25 mg) of Zoloft since first being diagnosed, because originally I was on Keppra (and oh boy, did I have the rage!) This last go around, the doctor upped the Zoloft to 50 mg but it doesn't seem to be making a dent.

I guess where I'm concerned, is that my current neuro seems to want to try new (brand) meds (and he always has boxes of samples on hand). I'm not averse to it, mind you. But, early on in our conversations he commented on the cost and I sort of felt I had to say that my health was worth the cost. Which it is, but one med ok..3 we are talking severe problems covering. So, I'm worried if I complain that he'll just throw another brand drug at me.

I'm also wondering if rather than aiming for zero seizures...if instead I ask to go back to just the Vimpat. I didn't do badly on it. Yes, I had auras and a few seizures, but I didn't feel half as bad as I do now. I wonder if the strict goal of trying to be seizure free is going to wind up really doing a number physically on me?

On an unrelated (sort of) note, I did have one interesting thing happen. When I was first diagnosed 10 years ago, I had been taken to a hospital (had my first seizure at home with my mom). They did an MRI and diagnosed the Grey Matter Heterotopia. Three other neuros and hospitals over the past 10 years did further MRIs and said they saw the same thing. Two years ago, I drove 3 hours to a major hospital that had great neuro reviews. They did an MRI and said no, I don't have Grey Matter Heterotopia!! Is this common to mis-diagnose?

The original hospital is a nationally known hospital, and the two other hospitals that also did MRIs are nationally recognized. Is there a chance that I'm nearing 50 (and I did notice in the notes of recent MRIs that they saw white matter disease) that the area where they saw the heterotopia is just covered with the white matter disease? Just curious if anyone has had something like this happen, where they are diagnosed one way and then told no, it isn't it (and that one hospital never followed up, they just said "yeah, your seizures aren't that" and pretty much dropped me). My current neuro hasn't ordered an MRI, so I'm not sure if at this age, they just don't care what the cause is, and the only goal is to reduce the seizures?

 

[Nakamova]

I wonder if the strict goal of trying to be seizure free is going to wind up really doing a number physically on me?

Being seizure-free is one goal, but so is quality of life. Everyone defines that differently. The important thing is that you get to define it, not your doctor. If you would like to try Vimpat again, that's your prerogative. Your neuro needs to honor your concerns and your choices.

 

[Nakamova]

It is true that the Grey Matter Heterotopia doesn't make a huge difference in terms of treatment. While seizures related to GMH are more likely to more resistant to medication, there is no other treatment (aside from lobectomy when the symptoms are severely debilitating).

On the other hand... very strange that your Grey Matter Heterotopia was obvious on your initial MRIs, but invisible on later ones. And White Matter Disease is a different kind of disorder -- it's related to the aging brain, and leads to a kind of dementia. So, yeah, I think it's important to ask your neuro about this. It's your brain! They owe you an explanation of the discrepancy between the earlier finding and the current one.

 

[seagull]

Lord why don’t americans who paid tax really get up in unison and hang governments they have who do this with insurence.This so bad.
the Dreaming thing I started getting that and thought they real not nice.Also short temper as I usually placid person and nobody makes me short tempered but lately it been worse than usually now I thought because I been on same medications for so long.After reading your post it back to drawing bord

 

[Koda1021]

Being seizure-free is one goal, but so is quality of life. Everyone defines that differently. The important thing is that you get to define it, not your doctor. If you would like to try Vimpat again, that's your prerogative. Your neuro needs to honor your concerns and your choices.

I agree regarding quality of life. While being without seizures would be great, if it comes at the expense of being a zombie, I don't know that I'm willing to do that.

For now, what I think I am going to do is give these 3 meds a shot. From what I'm read online, the side effects (for some) do get better and I've only been on it a short while. It could be, too, that the Briviact is part of the problem. My neuro reduced that and commented that we might eliminate it altogether.

I do have a follow up appointment in about a month, so I'm going to try and see if the side effects get better and do more to remind myself that "it's the meds, not me". Will it work? I don't know hehe

 

[Koda1021]

It is true that the Grey Matter Heterotopia doesn't make a huge difference in terms of treatment. While seizures related to GMH are more likely to more resistant to medication, there is no other treatment (aside from lobectomy when the symptoms are severely debilitating).

On the other hand... very strange that your Grey Matter Heterotopia was obvious on your initial MRIs, but invisible on later ones. And White Matter Disease is a different kind of disorder -- it's related to the aging brain, and leads to a kind of dementia. So, yeah, I think it's important to ask your neuro about this. It's your brain! They owe you an explanation of the discrepancy between the earlier finding and the current one.

Yeah, this whole thing has been strange. I am working on getting all my MRIs that I've had to date so my neuro can take a look, because even he was puzzled. This last MRI shocked me. All they did was send me a letter saying that my seizures weren't due to GMH and when I called and said "well, then what is causing them" they had no answer.

I guess my overwhelming thought, though, is that why does it seem that in relation to epilepsy, many doctors don't seem to have the greatest bedside manner. Is it because the causes are so varied? Granted, if I have a good doctor, I'm willing to overlook beside manner, but in so many cases, it seems they just pull up a list of drugs, prescribe them, then want you to move on? (or at least in my experience)

My GP who is fantastic, referred me last year to a neuro he'd met at a conference. He was certain she'd want to get to the bottom of things. I made an appointment and went to see her. Wow..what an experience! I mentioned the aurus and how they had increased and commented "is there a chance these aren't aurus but possibly simple partials?" She glared at me and said "what would make you think that? Did another doctor diagnose it?" As I told her, I'm not trying to do her job, but until then I'd only focused on the tonic clonics, and maybe was missing that what I thought were aurus were maybe something else.

The neuro I'm with now, when I said that, he looked at me and said "you know, you may be right!" and sure enough, when he prescribed meds specifically for simple partials, the aurus stopped! (which I guess I should stop calling them aurus hehe)

 

[Nakamova]

why does it seem that in relation to epilepsy, many doctors don't seem to have the greatest bedside manner?

Yes, I've noticed the same thing. Often, the docs don't give credence to the patient's perspective and knowledge. And unless a doctor or nurse has epilepsy themselves, they don't really understand how a seizure med feels. I've learned so much more from CWE than I ever did from my neurologists.