husband is a mess...

Discussion in 'The Watercooler' started by gcvmom, Jan 5, 2009.

  1. gcvmom

    gcvmom Here we go again!

    right now and I think it's the Trileptal he takes for seizures that's to blame.

    He's been on it about two months now, and the fatigue is just killing him.

    Over the holidays he took several vacation days and had a good chunk of time off. Many days he slept until after 1pm.

    Today he's supposed to go back to work, it's 9:30am and he's still not up. I went upstairs at 8:30 to check on him and he says he is just soooo tired he can't function.

    I called his GP and they can get him in tomorrow. husband was supposed to have an appointment booked for his neuro this month but he never called. So he asked me to call for him last Friday, which I did, but they were closed. They called back today and the soonest they can see him is Feb. 4th. I TOLD him to call in early December to get the appointment on the books, but NNNNNNOoooooooo!

    AARrrrggghh! Sometimes I just want to kick his butt.

    I also think the Trileptal is undermining the effectiveness of the Paxil he restarted.

    His employer is supposedly laying off a bunch of people from his group, but has not said when they will start notifying people, just that it's after the first of the year. He seems to think he's safe, for now. I just am so worried that he has a false sense of security... and with his fatigue issues affecting his attendance, that makes me even MORE nervous! :anxious:

    Just needed to get that out. I think I'm doing everything I can short of physically propping him up. He's our sole source of income, and his mental health issues put us into debt big time last year, so our shakey finances just cannot withstand him losing his job right now...
  2. totoro

    totoro Mom? What's a GFG?

    ugh, this is so hard. I was reading last night some blog about the 12 steps to remain on your medications.
    One of the biggest problems for most of us, (the guy was talking about people who suffer from seizures as well as mental illness), is the fatigue and the problems with working! Not to mention any other fun side affects!!!

    Is the Trileptal supposed to cause this much fatigue?
    K was only on it for a short time. I have never tried it.

    If my husband didn't work out of the house right now I don't know what we would do? He has not been able to walk since last Saturday, severe Gout and RA attack. 10 days now.

    I hope you can get him in somewhere, at least to check him and make sure it is just the medications? He may need an adjustment.
    That is just so hard, on him and you!
  3. gcvmom

    gcvmom Here we go again!

    Toto, the prescribing lit does list fatigue and sleepiness as a side effect. Of 23% of people who stopped taking the medication because of side effects, somnolence (3.8%) and fatigue (2.1%) were also listed.

    I'm not sure what other medications besides Lamictal are used for partial seizures, which is what he has. And he got a rash on Lamictal which is why the neuro had him stop taking it (plus it kept him awake at night).

    I think I'll give our normally useless pharmacist a call to see if he can tell me anything besides what's in the literature (he usually just puts me on hold and then comes back to read the package insert like I've ALREADY done). Maybe the fatigue gets better at higher doses? Maybe there's another medication he could take to counter the fatigue? Maybe this is as good as it's going to get and I'm going to have to start looking for work? Ugh.

    Not how I envisioned my first morning with everyone back at school and work! :p

    P.S. I'm sorry your husband is still having health problems. Has he seen his rheumy lately?
  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    gvcmom.....thank you for posting this because you reminded me to call my doctor!
    I have been forgetting to call my doctor for weeks now to fill my medications and they told me they were going to call them in but they didnt and I think I need to get an appointment me get it all fixed.

    My mind isnt working right.
  5. Lothlorien

    Lothlorien Active Member Staff Member

    Missy's on Trileptal. She had some fatigue in the beginning, but her body adjusted and she is not really effected by it that much now. Is he taking the generic? I'm wondering if he is, then switching out to the actual Trileptal might make a difference?
  6. gcvmom

    gcvmom Here we go again!

    Glad to jog your memory Janet :) And FWIW, my mind doesn't always work too well either ;)

    Loth, he's on the brand name drug. He's only been on it about 2 months, and the pharmacist said he's on a relatively low dose (300mg 2x/day). I'm wondering if the Paxil is contributing to the fatigue? He didn't notice it before when he was taking it with Lamictal, but that gave him insomnia. How much does Missy take?

    The pharmacist cited Topamax, Neurontin and Depakote as other medications for partial seizures. I'm wondering if they ever use two AED's together? He never had complete seizure control on Lamictal (and got a rash), and he's still having an average of 1 to 2 seizures at this level of Trileptal.

    Pharmacist also said he could acclimate to the fatigue, but some people never do. Great.

    So now I'm waiting to hear back from the neuro. He's got an appointment with the GP tomorrow (maybe he can consult with the neuro). And his psychiatrist appointment is next week.

    And it's now 11am and he's still in bed. I just don't know what else to do. Guess we'll just have to wait and see.

    Well, now I've got to run lunches to school since I didn't have my act together this morning (as usual). The lunch ladies all know my kids by name now because I rarely have their lunch ready in the morning. So sue me, okay? Sheesh.
  7. Lothlorien

    Lothlorien Active Member Staff Member

    Missy is actually on a much higher dose. 450 mg twice a day. She's only 80 pounds. That's really a low dose! That's probably the reason for his seizures, PLUS, if he's having seizures, that's probably why he's so tired all the time. Missy had a seizure in May and her dosage was increased from 300 mg twice a day to her current dosage. Your husband is probably two to three times her weight, right?
  8. Lothlorien

    Lothlorien Active Member Staff Member

    Oh, by the way....Depakote was definitely not a drug they would have put her on for partial seizures. The neuro's at CHOP said NO Way. Maybe because she's a child, but the other drug they were going to offer was Lamictal if the Trileptal didn't work.
  9. totoro

    totoro Mom? What's a GFG?

    I am on Lamictal and Topamax they do not make me sleepy at all... :) Sometimes I wish they did.;)
    Even when I was on higher levels of both, neither made me sleepy. I have been off and on both for years.
    husband does not have a Rhuemy... every one said he doesn't need one, he is too young! 38yo, well we finally went ahead and made our own apt. Next week!!! Yeah!!!
    His back is messed, up his feet, his hands...
  10. gcvmom

    gcvmom Here we go again!

    Loth, he is definitely heavier than Missy! :rofl: He's gained weight this year and is over 250 now, though I'm not sure by how much!

    I wonder if the fatigue would improve at a higher dosage, sort of the way it became more tolerable for difficult child 2 on Seroquel...

    It just struck me that his fatigue is a lot like what he experienced in the weeks postop last Feb/March.

    And you may be right about the seizures themselves making him tired...

    I hope to hear back from the neuro today or tomorrow.

    Toto, to tell someone they're too young to have a particular disease is just ludicrous! I hope he gets some relief from this appointment.
  11. gcvmom

    gcvmom Here we go again!

    Okay, I just got back from running some errands, it's nearly 2pm and he's still in bed sleeping. I woke him just to make sure he's okay. He says he's just really tired. No fever. He's not "sick" per se.

    Maybe Disneyland was too much for him yesterday? But geez, I'm fine and so are the kids...

    Still no word from the neuro yet. Maybe by 5:00 we'll hear.

    This is just ridiculous! :confused:
  12. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Wow-I hope you can get some answers soon. Hugs.
  13. everywoman

    everywoman Active Member

    I hope you get some answers soon. Any way this is depression?? I know when my husband is depressed---like he has been off and on for about a year now, he sleeps a lot. He never seems to get enough rest---although he hasn't missed any work.

    Another thing---is his thyroid functioning properly. You may want to have the dr. check his TSH level and see if it is out of wack. When mine was off I couldn't stay awake. I was tired all the time. Totally exhuasted....could hardly put one foot in the front of the other, so not me.
  14. ML

    ML Guest

    It's good he has a gp visit tomorrow. Let us know how that goes.
  15. Steely

    Steely Active Member

    Wow........SO sorry~
    I am not sure about fatigue on Trileptal, as it made difficult child manic & violent. (I know, what the hades, right?) But every medication has it's own ramifications.

    There are many, many anti seizure medications..........why not try something new? Especially if this one seems to be making things worse?

    Could he also be depressed? Would an AD be appropriate?
  16. Jena

    Jena New Member


    sorry i'm late to this. so, wow i'm sorry to hear whats going on. Did you get the call back yet?? How was he tonight did he wake yet????
  17. Fran

    Fran Former desparate mom

    easy child has been on depakote since his seizure and craniotomy. It's another possibility for seizure control.
    I think the doctor needs to know right away so that your husband doesn't lose his job.
  18. gcvmom

    gcvmom Here we go again!

    Thanks, Sharon :)

    EW, he does suffer from depression, and I'm wondering if the current dose of Paxil is being undermined by the Trileptal.... I remember being told that one or the other would reduce the effectiveness... but I can't remember which. The pharmacist wasn't much help with this. husband says he just has no motivation or drive to get up and do anything on top of feeling fatigued.

    ML, I'll definitely let y'all know how it goes tomorrow!

    Steely, he's already on Paxil, but when he sees the psychiatrist next week, we'll definitely discuss whether this is enough for him. He was on it last year with great success, but he was also on Lamictal and that helped him as well (but gave him a rash).

    We'll be discussing other seizure medications for sure with the neuro.

    Jennifer, he finally woke up around 3:30 this afternoon! He's upstairs watching TV now -- did get dressed because he was going to take difficult child 2 to basketball practice, but I beat him to it because I thought he was still asleep.

    Fran, the pharmacist did mention Depakote as another alternative for his particular type of seizure, so we'll see what the neuro says. Neurontin and Topamax were also tossed out there...

    Oh, and I guess I got his dosing all wrong. He's actually taking 1200mg of Trileptal per day -- NOT 600mg like I thought. What can I say, I have to keep track of difficult child 1's eight different medications, difficult child 2's two medications, and my three medications! I can't always remember husband's too!
  19. crazymama30

    crazymama30 Active Member

    husband was on Trileptal. He said it made him very tired, and he actually passed out on it. It was not a medication for him. I think Tegretol (sp?) is similiar in chemical composition to trileptal. Kinda like how Focalin is similiar to Ritalin. I hope they find something to help him.

    I know they stopped the Lamictal due to a rash, but have they tried putting him back on it? difficult child developed a rash, actually hives all over his body, and he went off all medications untill they cleared up, and then back on them with no problem. Is this an option for your husband?
  20. gcvmom

    gcvmom Here we go again!

    CM30, his neuro was very leery about the whole rash thing. He got it when he initially started Lamictal -- just limited to a large patch below his armpit on both sides of his torso. It was red, bumpy, and then it sort of flattened out and turned dark. It took a couple of months to go away. Then he was okay for a few months, and then it came back again, this time in the same area plus on his forearms and shoulders. It followed the same pattern as it resolved. The neuro just did not want to take any chances that it could get worse. Plus, it never completely addressed his seizure issues (although it was great for stabilizing his mood!) So no, I don't think they'll even consider going back to it.

    Tegretol was suggested by the psychiatrist for his mood issues, but I'm not sure if it will work for his particular type of seizures. They are simple-partials and the symptoms are purely autonomic in nature (dizziness, nausea, feeling like he's going to lose his bowels, sweating, skin flushing, etc.) The worst one made him pass out while he was driving. The ones he has now are very, very mild, and more of an annoyance, but still something we want to keep in check.