Why am I still getting so tired?

[kirsten]

I've had pretty good luck with the Neurontin thus far. It seems to me that it must have increased my phenytoin levels (they were very low and I read that Neurontin has that effect) because I haven't noticed any tonic clonics in the last 5 days. I don't think I'm having partials anymore but I'm having a lot of absence seizures.

I always thought of absence seizures as something that's really mild and that wouldn't make you suffer anything beyond the actual seizure (and the obvious brain reset). I've been working this week and I did okay, so today I felt confident to go to the mall and talk to friends along the way. That socialising lasted about two or three hours, and then I got home and relaxed. It's now 19:30 here and I have had a vicious headache since 13:00 that I can't get rid of but I also feel sleepy enough to go to pass out right now, which is unusual for me, especially since it's only now time to take my night meds.

I have so many things to do this month. I have to work and I have to find a new apartment and move, which means I have to catch trains and taxis to apartment viewings as well--far away because I'm moving to the beach. Now that I have energy during the day, I'm also keen on going out with some friends because I haven't been able to do that since November, other than an occasional short visit. I don't really know what's happening with me today or how to plan my life or how to make my energy last the entire day. Is there anything I can do to help myself? And what do you think is making me so tired and headachy? It's a crazy question, I guess, but I'm keen on seeing if anyone has any ideas--you always do.

 

[masterjen]

I would wonder about nocturnal seizures you are not aware of. I'm wondering the same thing with myself. I am on far less medication than I was a while ago, but feel worse in general even when I haven't knowingly had a nocturnal seizure. It is so very frustrating, I know. I feel for you.
But having said all that: You're moving out to the beach?! Very nice!!

 

[kirsten]

I hope so, jen. I'm going to do what I can to make it happen. The beach is not too far from where I live but on public transport, it's far, which means I don't get to go very often and sheesh, if I live here then I should be able to do that. So I'm trying to find a cottage in one of the artsy towns near the sea.

When I was having nocturnal seizures I would wake up with injuries of some sort or another and now I'm not, so I figured I wasn't having them.

 

[masterjen]

A cottage in one of the artsy places . . . wow, right up my alley! I hope you find what you're looking for

As for the potential night seizures: I hope you find your answer. Could some of what you are noticing be medication-related? I have issues (low motivation, feeling less enthusiastic, queasiness, feeling on the verge of a headache) throughout the day since I've been off the keppra and tegretol and just on vimpat. Either the mix was better for me mentally, or these frequent stiffening episodes really are tonic seizures which were way better controlled before and they're getting the better of me in terms of energy, etc.

What is going through my mind is switching back to tegretol between now and when I see the Dr. in 10 days; I'm tempted to do it on my own but I'll wait until I hear back. Can you recall a time during your Neurontin increases where you felt better? Could you revert to that level again and test to see if how you're feeling is medication-related?

 

[kirsten]

I've woken up feeling worse than I did last night so something's not going right. I guess I'll have a better idea of what's going on as time progresses. I don't think it's the meds at this point because I was improving on the Neurontin and I was starting to feel bad at a time when all my meds would have been at their lowest levels (right before my biggest dosage.) Maybe I had a seizure last night or late in the afternooon. I'm only in my second week of Neurontin and I'm managing it better now than I did in the beginning. I'm not yet up to my full dose yet.

I looked up Vimpat and found a good outline here: http://www.epilepsy.com/medications/b_vimpat_intro

It seems Vimpat is only for partial onset seizures, which could be a good explanation for why you're not feeling as well on it. I wouldn't change before you see the doc, though. You need to wean on and off and not doing that could make your situation worse.

 

[masterjen]

Hi, Kirsten - so sorry you are feeling worse. Maybe it really is just the medicine. Two weeks into a new one isn't very long, and given that you are already on other medications maybe it is taking your body a while to adapt. Is it possible to slow down on the rate of medication increase? I'm very susceptible to medication side effects if I increase the dose at the so-called recommended rate and I have to go at about half that speed. You mentioned that it seems like the Neurontin is helping with seizure control, so maybe slowing down or reducing the dose for a while is worth a try? Seizure control is huge, but there is nothing worse than feeling lousy even when we don't think we have had a seizure.

Many thanks for the link about Vimpat. It prompted me to look up the Keppra and Tegretol I was previously on - only Tegretol is for generalized seizures. So if what I am having are tonic seizures, no wonder I'm not getting improvement now on just Vimpat. When I was on all three medications I was getting the stiffening episodes once per week at the most. Interesting!

Another question for you: have you ever woken due to a sudden "jump" of your torso or hips (I'm not quite sure where the origin is) kind of like suddenly doing a partial ab crunch, or woken due to both shoulders suddenly doing a jump? My arms have even hit my face when this has happened! The neurologist has already said they are not the falling asleep hypnic jerks people get, because they occur too far along in my sleep (usually second half of the night). Since I am in the process of discovery, thanks to your help, just thought I'd see if I could shed some light on this other occurrence, too.

Hope you are starting to feel better!

 

[kirsten]

Hi, Jen. What you said about the Vimpat/Tegretol/Keppra situation was exactly what I was thinking. So I hope that leads you to a better place with your seizures.

As for the torso and shoulder jumps, I haven't had them that I can remember. My memory is really bad at the moment so it's possible that I have experienced that once or twice but the tonic back arch situation is my problem. Maybe others who have myoclonic seizures can tell you if those are like theirs--they'd probably be more helpful on that score.

I turned off at 15:00 today, same as yesterday. Just completely ready to go to bed and sleep for the rest of the night. But this is ten times better than what I was going through before the Neurontin, and with my tonic clonics, and my tendency to go into status, it's not a good idea to go backwards, even if I have to pay for it in the short term with this situation now. I will only be going up to 3600mg Neurontin at the end of the month, so I do have time to adjust still. I'm still wondering what's causing the tiredness but I think you may be right--my body is probably adjusting. That plus the absence seizures must be a strain, and I am under a lot of stress at the moment, too.

 

[masterjen]

Hi, how was the rest of your day? Are you starting to rebound a little?

 

[kirsten]

Hi, Jen

Sorry I took so long to get back. You actually messaged me during my night, so my last message was in the evening of that day, no rebounding. Today I haven't had that same tiredness. I went to my psychiatrist, who is a TLE specialist of sorts--she's very clued up and studied it as part of her psychiatry training--she was also a GP before she became a psych. She has summed things up really well. She says at the moment I'm feeling tired at the end of the days because of kindling--so I'm recovering but I'm still having seizures because I had generalised seizures for quite some time and that makes it difficult to get control again. She thinks that will go away on its own (obviously with my treatment), and I'll go up with the Neurontin at the beginning of next month.

The good news is that she said she has had four other TLE patients who have also expressed that they felt isolated (as I do), so she's strongly considering starting a TLE support group. How awesome is that? I will write some of the more interesting things she said in a new thread cos I'm interested to see others' experiences.

 

[MrE]

Exercise
Eat right
Sleep better
Stay consistent
Pray and hope for the best

(just saying what works for me...you don't have to agree...but I do wish you the very best )

 

[Nakamova]

I've had pretty good luck with the Neurontin thus far. It seems to me that it must have increased my phenytoin levels (they were very low and I read that Neurontin has that effect) because I haven't noticed any tonic clonics in the last 5 days. I don't think I'm having partials anymore but I'm having a lot of absence seizures.

If your Dilantin levels have increased due to the Neurontin, that could be another reason for your fatigue. Dilantin always tended to knock me out.

 

[nightowl47]

Kirsten, I do understand where you are coming from...as far as the, "Why am I getting so tired", feeling. It seems like I am like that almost every day, and I ask myself the same thing. I take the generic Depakote ER 1000mg twice a day and Zonisemide (generic Zonegran ) 200 mg in the morning then 300 mg of it at bedtime along with the Cymbalta 60 mg too. I used to use the Trazadone, which worked well for a while,& my Neuro prescribed it for me as he knew that the Zonegran had a side effect of keeping you awake, I mean I wasn't depressed but, I was trying to find a med that would help help me sleep, plus deal with any sort of anxiety disorders I was having problems with, and the Cymbalta seems to help.
However, I still feel very sleepy in the afternoons. I wonder if it's the meds or something else? I mean I take vitamins, B-12, B-6, Calcium, Magnesium, along with other vitamins...I'm just wondering, how in the world could I be so exhausted before the day is even over with???

 

[kirsten]

I'm also taking Valproic acid, Nightowl, although only 600mg because I get sick with anything higher. Zonegran's not something I know a thing about. I'm not able to take it at all, unfortunately--it might have been a solution for me.

Nak, the only thing that makes me doubtful that the tiredness is from the phenytoin is the fact that it couldn't possibly happen any further from my phenytoin dosage time. It does make me think, though, that that might be the reason for the tiredness: maybe the fact that the phenytoin is wearing off at that point could be bringing on more seizures.

 

[masterjen]

Kirsten - Oddly, when I was on more medication the side effects from them (eye sensitivity, fatigue, headache, mild dizziness) were always worse in the morning - so no morning dose yet and a good 10 hours since the evening dose. These effects would last 2-3 hours, and as far as I could tell seemed independent of whether I'd had a night seizure. The effects wouldn't occur every morning, but most. The evening doses were higher than the daytime ones, but 10 hours later?? Maybe this kind of fits with what you're noticing.
On less medication now I don't have these effects, but then as we've talked about night activity is poorly controlled now too.

 

[kirsten]

I also feel the side effects of my night dose in the mornings but we're talking tiredness after a whole day of feeling fine, just four hours before my night dose. It doesn't add up.

 

[N Sperlo]

Exercise
Eat right
Sleep better
Stay consistent
Pray and hope for the best

(just saying what works for me...you don't have to agree...but I do wish you the very best )

Drink beer
Eat right
Sleep better
Stay consistent

That is about where we differ.

I deal with the sleepiness daily. I do take some naps and they tend to help. I do much better when I'm up at night, but I don't get to pick when I make my money. Company wants me here at 6am, I'm here at 6am.

 

[masterjen]

Just a thought - when you were more uncontrolled with the awake seizures, what time of day would they typically occur? If your daytime seizures usually occurred near the end of a day maybe the fatigue you're having now is like an "aura" of sorts; somehow connected to seizure activity that is trying to break through but the medication is preventing the actual seizure from occurring.

 

[MrE]

Drink beer
Eat right
Sleep better
Stay consistent

That is about where we differ.

Okay and does drinking beer make you feel proud about yourself because it seems highly irresponsible...especially when you have epilepsy and are on potentially liver damaging medication that would only be enhanced by the consumption of alcohol...(and assuming you actually do have epilepsy)...but go ahead...drink to your hearts content (oxymoron)...I guarantee you that I will be the one living a longer healthier life because I take healthy pride in a positive and constructive lifestyle...exercising...meditating...and praying...strengthening my body, mind, and spirit... (and of course eating right and sleeping well and staying optimistic)

You know come to think of it...we really don't have much in common and I don't agree with your destructive ways...so I am going to say farewell as friendly as I can...I'm removing you from my friends list and adding you to my ignore list...I do hope you will one day realize that you don't need alcohol to enjoy life

 

[kirsten]

Jen, I was having the nocturnal tonic clonics but as far as the partials and absences are concerned, my memory's too shot to follow whether they're happening more during the early or late day. But I think that you're right here--the tiredness is connected to seizure activity. As my psych said, it's a result of kindling. So that makes me feel calm enough. For me, kindling is a good word right now because it means the end of all the horrible stuff I've been going through. I'd imagine that given that I don't seem to be having partials anymore, perhaps the tiredness is the partials trying to break through the meds.

 

[masterjen]

Hi, Kirsten - any improvement?
How does your psychiatrist explain kindling?? It is a term I have only seen once or twice in reference to seizures.