Meds Change

[Literophile]

I am having terrible side-effects from Depakote--depression/irritability, tiredness, hair loss, hand tremors--so I asked my doctor (not a neuro and in fact hardly knows anything about anything to do with neurological problems) if I should change medication back to Lyrica which she had previously prescribed to me for RLS, and she said yes. It probably wasn't the best to ask HER but the neurology clinic only just got the referral on Friday. I asked her while the referral was still in limbo (which it was for over a month).

So here's my question--should I change it? I'm already taking it at night instead of Depakote, but I can just change it back to Deapkote.

 

[epileric]

I would suggest you do as your doctor tells you then tell the neurologist when you can.

 

[Literophile]

Kay then.

 

[Endless]

When will you see the neurologist? How bad are your seizures? How well did the Depakote work?

If you will see the neurologist soon I'd stick it out. But if it's MONTHS, then talk it over more with your doc.

If it were me I'd have my doc call the neurologist and get you in sooner. Have him say that you are having serious problems with your seizures and your meds. Sometimes they can get you in within a week or two.

 

[Literophile]

When will you see the neurologist?

I just scheduled an appointment with them for next Tues. *phew* After more than a month of waiting for the referral to process, at least there isn't a long wait to see the doctor.

How bad are your seizures?

I didn't think they were very bad until my mom told me I was having at least three "minor episodes" a day, which I think she's referring to complex partials or something, but I'm not sure because I don't remember them. I haven't had a full TC in over a week I think, unless the one I had at Disneyland counts. I was shopping on main street and my mom was with me because I kept having auras, and then everything went black (I was still aware, though, partially), my eyes rolled back and my arms tensed and started to shake. Mom was there to hold me up, but I don't think it counts as a TC.

How well did the Depakote work?

Pretty well, but like I said, I'm always really depressed. My family's getting tired of me feeling sorry for myself.

If you will see the neurologist soon I'd stick it out. But if it's MONTHS, then talk it over more with your doc.

See, that's kinda what I was thinking, too, but this depression is killing me.

 

[Endless]

See, that's kinda what I was thinking, too, but this depression is killing me.

I'm so sorry. I really do understand. I've been severely depressed since my dose of trileptal was upped to 1500. I'm trying to hang in there while I ramp up on Lamictal, but it's really hard. It doesn't matter how I try to adjust my attitude. Some days are good days, some days I'm so down in the dumps it's in the gutter.

I dunno... I think about my medium-term goals, which are to drive and to get back to work. If I have to put up with the trileptal for a few months for that, I'm willing to do it. But it's easier because I have a plan. You don't. Hard to stick with something when you don't see the end in sight.

Will you let us know what you decide?

 

[RobinN]

It seems that a change of meds and adjusting them should be able to be done with a one on one conversation over the phone. If tests need to be done to monitor blood levels they can give you that referral easily.

 

[rangerwvu]

I did just that a few weeks ago...called my Nuero and let his nurse know that the Trileptal he had started me on a 3 weeks earlier was not working for me due to side effects and that I was going to start titrating myself off of it (I have been on Lamictal for years and the T was an add on following tonic-clonic breakthrough seisures in March). He called me encouraged me not to do it and to come in before doing that, but apt was 2 weeks away; and we briefly discussed, he told me how to drop it down, etc...as I told him I was going to start reducing it now... and they scheduled me in within a few days.

If this sorta of thing is still going on for you or if it comes up in the future keep this in mind as it helped me: If you have been to this Neuro before, call the office up and tell them the medication is affecting you terribly (this gets the attention of their liability insurance policy lol but true) and you need to come in soon. If they say they do not have any apointments open for weeks, blah blah, stress that it is effecting you terribly and can they work you in, you fear you cannot wait. That should get you one within a couple of days as they wont want to say no. If you are not an established patient with the Nuero, then call your routine doc and do the same thing, they will get you connected to nuero quick in that case. Sometimes, unfortunatley, it is in the subtle word choices we make that can make all the difference in the world. Hopefully this path could work for you as it did me if you need it. Which I really did and sounds like you do as well! Oh and another thing, if you are going to a Nuero practice that has only 1 or 2 docs, go to a larger practice if you can...see the same Doc every time unless they have to work you in, then you got to take whichever one has the easier schedule in the next day or two. Remember, if you are wanting to ADD/try a new med, they are not likely going to do that until you come in for visit, due to aforementioned medical liability policy.Good luck, you are in my thoughts as you navigate all of this!

 

[Literophile]

Will you let us know what you decide?

I shouldn't be taking Depakote anyway, as it turns out. I have a blood clotting disorder that's like a way-less-deadly form of hemophilia. Not sure what the exact name is--only thing I was told was that I had "lazy clotting devices". I got my blood drawn today (I swear, those people are vampires and I have siren's blood) and it wouldn't stop bleeding for way longer than it usually does, which is normally unusually long. That's one of the side-effects of Depakote. So I've decided to keep taking myself off it.

@RobinN She (my doctor) did talk to me about how to change meds. She didn't really say if blood levels needed to be monitored, though.

@rangerwvu It wasn't the neurologist who I talked to about changing meds. I've never been there before, either, except that I was hospitalized there over a month ago. This is a follow-up for that. It's taken THAT LONG to get the referral, have them send it, have the insurance company approve it, and have the clinic receive and process it. I'd like to make the appointment sooner, but she said that the one she gave me was the soonest they had available. Right now, though, I'm just glad I even GOT the appointment. *shakes fist at doctors*:soap: