Question about Trileptol

[Elsie]

I was up to see my neurologist on Monday, just my usual annual visit for renewal of prescription.

He indicated that I WOULD eventually have to get off this medicine and go onto something else because "they've come up with some problems with this in old people". And turns out he is talking about the sodium thing. He made it sound like it wasn't an IF it happens, it is a WHEN in happens, especially for an old person. I asked him what he considered old and he said 70. So I have 9 years to think about this!

I was totally confused by this as I thought this side effect was mostly something that happened randomly to some people. Googling a bit to find the age/sodium connection, I didn't come up with anything. Does any of this sound familiar to anyone?

And he also tells me he is going to retire, so I'll have to have a new doctor, will have to go down that road most of you have traveled.

In googling about the sodium, though, I did find several references to not taking this if one has an arrhythmia (not sure of spelling)) which I do have and which he knew. My arrhythmia seems a little worse lately and I'm wondering....

 

[Cint]

I took Trileptal about 5 years ago, in my late 40's, and had to be taken off it because of my sodium level. So it isn't necessarily an "age" thing. It's the medicine or perhaps it's the doctor.

from
http://www.epilepsy.com/medications/b_trileptal_side

What are some common side effects of Trileptal?

In some patients, especially those taking higher doses of Trileptal, the level of sodium (salt) in the blood may become low (a condition called hyponatremia). Usually this is not serious, but occasionally it may increase the number of seizures that you have or cause other problems such as tiredness or dizziness. Your doctor may want to check the amount of sodium in your blood to see if this is happening to you, especially if you are having nausea, a vaguely "unwell" feeling, headache, listlessness, or confusion.

 

[Endless]

Hi, Elsie,

And welcome to CWE!

Do you see a cardiologist for your arhythmia? If so, is it possible for your cardiologist and your neurologist to actually talk to each other? I find that magical things happen when my doctors actually TALK with each other. If you see a regular primary care physician for your arhythmea, she/he could call your neurologist, too.

It's entirely possible that the arhythmia getting worse is the trileptal. Your doctors should test to see if it actually IS worse. If it is, then the Trileptal may need to be switched.

The sodium... your primary care doc should test it every 4-6 months to make sure you are okay. In the meantime, I wouldn't borrow a problem you don't have yet. If the trileptal is working, it's a pain to switch meds unless you have to. In other words, don't worry, be happy!

Here's a link to the symptoms of low sodium:
http://www.medicinenet.com/hyponatremia/page2.htm

Ironically, one of the symptoms is seizures, as well as headaches, confusion, muscle spasms, and weakness/tiredness.

Hang in there.

 

[Elsie]

Thanks!

My heart was jumping around when I was being treated for bronchial asthma one day. That's when the GP caught it. I went through the usual tests, the stress test, dye xrays and halter monitor. When I did the stress test it was particularly squirrelly, doing a beat beat beat skip over and over. The GP sent everything to a heart dr. who specializes in that sort of thing, pacemakers, etc., and I had a consult with him. He said my heartbeat was normal nothing to worry about. ?? I was on Tegretol at the time.

Telling my gyno. about this, she looked puzzled and said ah, arhythmias are not normal.

I did tell my Neurologist about it all. He seemed a little concerned until I told him the specialist said not to worry.

I don't get a lot of attention from my Neurologist. Since I've posed no neurological problems for him for so many years, it's usualy a very shallow conversation, aimed at writing my prescription and getting me out of the office in time, I don't get to bring up a lot of questions. Maybe it's a good thing he is retiring in the next several years. So, I don't think he'd be interested in talking with this dr.

I will remember to ask him about this next year unless something changes. I didn't know there was a connection until I started googling about the sodium.

If my arhythmia gets any worse I will go seek some help. I have insurance issues and the usual economy issues, so I don't seek medical help unless absolutely necessary. My arhythmia flares up when I am ill with flu or something or when I am particularly stressed (which I seem to be right now). Maybe it has nothing to do with the Trileptal. I'll not know unless it gets a lot worse.

 

[mel239]

WOW-what a coincidence-no wonder Im always checking this site! My doc called 3 days ago to go have my blood checked again-said my sodium levels were dangerously low-figures,decent med for me and this happens-

 

[kristikay]

Before I was switched to Vimpat in June I was taking Trileptal. At one point my sodium levels became dangerously low. My GP doc told me to try drinking some Gatoraide throughout the day. It worked for me and made all the difference in the world with how I felt! Just wanted to mention it for those of you who are having problems. Its an easy way to correct your sodium problems.

 

[mel239]

The only thing the nurse said to me was to have a recheck and cut back on fluids-dont think I can go any less-Im down to less than 20 oz a day and its been 80s all summer

 

[Elsie]

Hmmm I'm beginning to wonder about this doctor. I went 1 year with no checking on my sodium. I think I went the 2nd year with no checks too. 3rd year I happened to ask him about my problem forgetting a word now and then and he ordered sodium test (electrolytes). This time he ordered electrolytes and CBC. If I didn't know better I'd think he was learning about this stuff as he went along. Is it ok to go a year without tests?

Course, I asked him what the symptoms were and he said really being tired and listless, and my DH and I looked at each other (when I told him this) and we laughed - like how would I know the difference...yawn...

 

[Nakamova]

I agree that some docs seem to be learning on the job. When I first was diagnosed with e and wanted to try going off meds, my neurologist told me to quite cold turkey. She would never recommend that now. And I've had to train her to accept I can have seizure control with lower than average doses.