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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 20 to 44 of 44. Go back in thread:
Posted by SLS on September 28, 2001, at 11:34:43
In reply to Re: elusive putative seizure disorder » Elizabeth, posted by Zo on September 28, 2001, at 0:38:56
> Elizabeth. I wish I knew you better, to get a feel for your case. That's what I did for my own seizure disorder, and with something as varied as TLE, I can't help but think that's one of the best ways to arrive at a sense of one's diagnosis. The only book avail. in libraries or o.u.p./used is Seized, such a must- read and good-read, it ought to be reissued. What I learned cruising the web, and then putting it all together, is that there's nothing cut and dried about it. . and somehow neurologists are the *worst* at needing cut and dried. My TLE, as do many, didn't show up on a sleep-deprived EEG. . and yet I've had it since I was a child. What kind of seizure did you have? A good epilepsy sight will give you names and symptoms. And any time spent on braintalk.org on the Epilepsy board will acquaint you with the amazing variety of symptoms. If you want to discuss this offlist, I am at zozo1029@mac.com.
>
> At any rate, my pdoc takes care of that part of my dx too. . and all these things are *so* interwoven: TLE, BPII, ADD, even CFS. The point at which to become concerned and do things like an MRI - not that they are terribly defining - is if you are worried about a tumor or something, or the seizures are dangerous. Yours are very infrequent? Follow some pattern?Zo,
Great advice. Thanks for providing the summary.
Elizabeth,I figured out what's wrong with you. Your brain just can't handle being away from your boyfriend. It seems that the only time you have an episode is when he's gone.
:-)
I am curious though, how does the appearance of seizures compare in time relative to your beginning treatment with opioids?
- Scott
Posted by PattyG on September 29, 2001, at 9:23:16
In reply to Re: elusive putative seizure disorder » Elizabeth, posted by Zo on September 28, 2001, at 0:38:56
Hello,
I have been trying to search the archives (not sure I've done this properly) about seizures and consequent testing, medications, causes, etc. My 27 yr. old son has had his second seizure in two years and we're in the process of trying to learn the cause. Neurologist first thought it was a side effect of the Wellbutrin, but since he's been off that and has now had another episode, obviously not. Test scheduled are MRI, MRA, and EEG. After first episode, he had CAT Scan and MRI and some blood work, but nothing showed up. My son does smoke pot and the doc says this can lower threshold for seizures. I have not idea, but found it interesting that after first seizure, he told son it was *withdrawal* from usage that could prompt an attack. So which is it? Or is it? This guy does seem a bit uptight. They prescribed Dilantin (Phenytoin) and I'm now hearing that is a relatively old drug with side effects. Can you offer some insight or direction to websites that might help us?
Thank you so much,
PattyG
Posted by Mitch on September 29, 2001, at 11:43:19
In reply to Re: elusive putative seizure disorder, posted by PattyG on September 29, 2001, at 9:23:16
> Hello,
>
> I have been trying to search the archives (not sure I've done this properly) about seizures and consequent testing, medications, causes, etc. My 27 yr. old son has had his second seizure in two years and we're in the process of trying to learn the cause. Neurologist first thought it was a side effect of the Wellbutrin, but since he's been off that and has now had another episode, obviously not. Test scheduled are MRI, MRA, and EEG. After first episode, he had CAT Scan and MRI and some blood work, but nothing showed up. My son does smoke pot and the doc says this can lower threshold for seizures. I have not idea, but found it interesting that after first seizure, he told son it was *withdrawal* from usage that could prompt an attack. So which is it? Or is it? This guy does seem a bit uptight. They prescribed Dilantin (Phenytoin) and I'm now hearing that is a relatively old drug with side effects. Can you offer some insight or direction to websites that might help us?
>
> Thank you so much,
> PattyGHi,
One of the best sources on the web for epilepsy that contains a lot of discussion about children and adolescents with epilepsy is at:
http://neuro-www.mgh.harvard.edu/Hope this helps.
Posted by Elizabeth on October 1, 2001, at 14:24:12
In reply to Re: elusive putative seizure disorder, posted by PattyG on September 29, 2001, at 9:23:16
Patty --
I'm close to your son's age, and my "episodes" (at least, the ones that have been noticed and documented) have been very infrequent too. I've had several MRIs and EEGs, all within normal limits. I had a SPECT scan -- a type of functional brain imaging -- which apparently was not within normal limits, although nobody to date has been able to explain the significance of these findings to me.
But anyway, because of the similarities, I'm interested to hear about your son's seizures. What happened during the two occasions, if you're willing to discuss it?
> My son does smoke pot and the doc says this can lower threshold for seizures. I have not idea, but found it interesting that after first seizure, he told son it was *withdrawal* from usage that could prompt an attack.
A neurologist at the hospital I went to tried to blame my various medications for it. First he said that opioids lower the seizure threshold, then he said opioid *withdrawal* lowers it. He also seemed to think that I was using benzodiazepines regularly (I take Klonopin or Xanax now and then, at most perhaps once a week) and could have been in withdrawal. (My boyfriend, who is great at talking to doctors who're pretending to have answers they don't have, and who's a neuropharmacologist by training though no longer by profession, quickly disabused him of this notion.) It didn't even occur to him that the antidepressant I'm taking, desipramine (one of the old tricyclics), could have been involved.
I'm taking Trileptal (oxcarbazepine), one of the newer anticonvulsants, and so far it seems to be agreeing with me. It's a less-toxic relative of Tegretol (carbamazepine), an older drug which is considered the gold standard for temporal lobe epilepsy. I'm surprised that your son's doctor chose Dilantin, since there are a lot of safer and more tolerable alternatives.
So anyway, I'm very interested to talk to you, or to your son, about his condition, to compare notes and perhaps offer mutual support. Hope to hear from you.
best,
-elizabeth
Posted by Elizabeth on October 1, 2001, at 14:24:59
In reply to Re: elusive putative seizure disorder, posted by SLS on September 28, 2001, at 11:34:43
> I figured out what's wrong with you. Your brain just can't handle being away from your boyfriend. It seems that the only time you have an episode is when he's gone.
< g > Great theory. I have an alternative one: the only time it's *noticed* is if he's around. He's really freaked out about it right now, doesn't want to leave me alone at all, so I'm spending some time with my parents. My mom knows people at the hospital down here (she's on the ethics committee), and hopefully she will be able to hook me up with a good neurologist.
> I am curious though, how does the appearance of seizures compare in time relative to your beginning treatment with opioids?
Why would you want to know that? But anyway, the [alleged] seizures began -- or were first noticed -- long before I ever took bupe.
-e
Posted by PattyG on October 1, 2001, at 16:04:15
In reply to Re: elusive putative seizure disorder » PattyG, posted by Elizabeth on October 1, 2001, at 14:24:12
(Elizabeth wrote)
Patty --I'm close to your son's age, and my "episodes" (at least, the ones that have been noticed and documented) have been very infrequent too. I've had several MRIs and EEGs, all within normal limits. I had a SPECT scan -- a type of functional brain imaging -- which apparently was not within normal limits, although nobody to date has been able to explain the significance of these findings to me.
////This brings to mind another question - have you (or anyone) ever heard of a scan/study called BEAM?
I mentioned it to the neurologist and he quickly told me to "take with a grain of salt" what I might read or learn about on the Internet!But anyway, because of the similarities, I'm interested to hear about your son's seizures. What happened during the two occasions, if you're willing to discuss it?
/////He had a feeling of being lightheaded and then immediately fell to the ground, convulsed, frothed at the mouth, eyes rolled back in head - did not lose control of bowels or bladder - lasted about 1 -2 minutes - was very disoriented after they happened and b/p was elevated somewhat. He also threw his shoulder out of socket this last time. I *think* the doc called them complex partials (will have to check)
> My son does smoke pot and the doc says this can lower threshold for seizures. I have no idea, but found it
interesting that after first seizure, he told son it was *withdrawal* from usage that could prompt an attack.A neurologist at the hospital I went to tried to blame my various medications for it. First he said that opioids lower the seizure threshold, then he said opioid *withdrawal* lowers it. He also seemed to think that I was using
benzodiazepines regularly (I take Klonopin or Xanax now and then, at most perhaps once a week) and could
have been in withdrawal. (My boyfriend, who is great at talking to doctors who're pretending to have answers
they don't have, and who's a neuropharmacologist by training though no longer by profession, quickly disabused him of this notion.) It didn't even occur to him that the antidepressant I'm taking, desipramine (one of the old tricyclics), could have been involved.////Wow! A neurophomaracologist! Pretty handy to have around, right?:) So what would his thoughts be regarding the pot? (I want the answer to be that it's not harmful because I'm pretty darned sure he isn't going to give it up, you know?! < g >) And, yes, I did read that the tricyclics are not recommended if seizures are involved.
I'm taking Trileptal (oxcarbazepine), one of the newer anticonvulsants, and so far it seems to be agreeing with me. It's a less-toxic relative of Tegretol (carbamazepine), an older drug which is considered the gold standard for temporal lobe epilepsy. I'm surprised that your son's doctor chose Dilantin, since there are a lot of safer and more tolerable alternatives.
////The ER doc prescribed the Dilantin and the neurologist said to stick with it (I had asked about Topamax - he said too many side effects with that!) Maybe he's waiting until all tests are completed?
So anyway, I'm very interested to talk to you, or to your son, about his condition, to compare notes and perhaps offer mutual support. Hope to hear from you.
////I shall forward your message to my son, but doubt he'll correspond - he's not really into that - oh heck, he might. Can't hurt to try! I wish he would.
Thanks so much,
PattyG
Posted by SLS on October 1, 2001, at 16:52:41
In reply to Re: elusive putative seizure disorder » SLS, posted by Elizabeth on October 1, 2001, at 14:24:59
> > I am curious though, how does the appearance of seizures compare in time relative to your beginning treatment with opioids?
>
> Why would you want to know that?
No reason in particular. Just trying to help you figure things out. It is wonderful that you have a boyfriend that cares so much about you. Sounds like you found a good one.
- Scott
Posted by Elizabeth on October 2, 2001, at 11:47:38
In reply to Re: elusive putative seizure disorder » Elizabeth, posted by PattyG on October 1, 2001, at 16:04:15
Patty --
> This brings to mind another question - have you (or anyone) ever heard of a scan/study called BEAM?
Yes. "Brain electrical activity mapping" -- same thing as a quantitative EEG (qEEG), I think. Lorraine has had this done, she would be able to tell you more about it.
> I mentioned it to the neurologist and he quickly told me to "take with a grain of salt" what I might read or learn about on the Internet!
That's good advice.
> He had a feeling of being lightheaded and then immediately fell to the ground, convulsed, frothed at the mouth, eyes rolled back in head - did not lose control of bowels or bladder - lasted about 1 -2 minutes - was very disoriented after they happened and b/p was elevated somewhat. He also threw his shoulder out of socket this last time. I *think* the doc called them complex partials (will have to check)
He had convulsions? I didn't, that I know of. Then again, when the seizure actually occurred (if that's what it was), there wasn't anybody around. I had no real warning, I just blacked out. I had been feeling a little under the weather that day, but I had no idea anything like this was going to happen, and I don't remember anything in particular happening right before I lost consciousness. It took somewhere around 30 minutes for me to become aware again. When my boyfriend got home, I was just sitting in a chair, unconscious. He checked my ABC's (airway, breathing, and circulation, that is) and they were all okay. He managed to get me to "wake up" with a cold wet washcloth, but I still wasn't aware. My pupils were completely dilated and nonreactive. I didn't speak (or otherwise vocalise) or respond when my boyfriend spoke to me, but I was walking around and stuff. He was afraid that I'd had a stroke or something.
> Wow! A neurophomaracologist! Pretty handy to have around, right?:)
Yes, I have an in-house consultant. :-) (We first got to be friends because of our common interest.)
> So what would his thoughts be regarding the pot?
Surprisingly, he doesn't know -- he studied the effects of a lot of psychoactive drugs on animals, but not that particular one, it would seem. (He did work with opioids, benzodiazepines, and antidepressants.) I looked around for some info, but I couldn't find much, and what I could find seemed to be inconclusive or contradictory. How often does he smoke it?
> The ER doc prescribed the Dilantin and the neurologist said to stick with it (I had asked about Topamax - he said too many side effects with that!) Maybe he's waiting until all tests are completed?
Yeah, if he changed something that could confuse things. But Topamax is probably safer and more tolerable than Dilantin is. (It does tend to cause weight loss, so if your son is a skinny guy it may not be the best choice.) Some anticonvulsants are better than others for particular types of seizures, and that might be one reason to choose Dilantin over something else. Dilantin is also a very old drug and its efficacy is well-established, so many doctors may prefer it over newer anticonvulsants.
I hope this helps. It's good to talk to you. Give your son my best wishes.
-elizabeth
Posted by PattyG on October 2, 2001, at 12:50:30
In reply to Re: elusive putative seizure disorder » PattyG, posted by Elizabeth on October 2, 2001, at 11:47:38
/////Elizabeth - Your experience sounds very scary (not that my son's wasnt' as well) but I think especially to have it happen when you're alone would be worrisome.
/// So what would his thoughts be regarding the pot?Surprisingly, he doesn't know -- he studied the effects of a lot of psychoactive drugs on animals, but not that
particular one, it would seem. (He did work with opioids, benzodiazepines, and antidepressants.) I looked around for some info, but I couldn't find much, and what I could find seemed to be inconclusive or contradictory. How often does he smoke it?/////I would imagine he uses daily. In your bf's studies, did he find anything regarding Effexor? My son has been taking that for about 5 years or so - he's done fairly well with that, but like many, is hoping for Reboxetine to be approved.
Dilantin is. (It does tend to cause weight loss, so if your son is a skinny guy it may not be the best choice.) Some anticonvulsants are better than others for particular types of seizures, and that might be one reason to choose Dilantin over something else. Dilantin is also a very old drug and its efficacy is well-established, so many doctors may prefer it over newer anticonvulsants./////He tends to carry extra weight and has had more trouble with that since dropping the Wellbutrin - he'll probably be pleased if the Dilantin aids in this area. Does it "energize" at all?
I hope this helps. It's good to talk to you. Give your son my best wishes.
///Thank you so much for all your time and information - you have been a comfort:) Do you know of any other threads that might be helpful in our quest for knowledge?
Again, thank you,
Patty
Posted by Elizabeth on October 6, 2001, at 11:19:54
In reply to Re: elusive putative seizure disorder, posted by PattyG on October 2, 2001, at 12:50:30
> Elizabeth - Your experience sounds very scary (not that my son's wasnt' as well) but I think especially to have it happen when you're alone would be worrisome.
Yes, although my boyfriend seems to be more freaked out about it than I am. It was especially scary for him to come home and find me that way because one morning (5am or so) back in February he discovered me lying on the floor in the kitchen, comatose. He was afraid that something like that had happened again (we never found out what caused that episode, either).
> I would imagine he uses daily.
Would he tell you if you asked? (A lot of pot smokers don't do it every day; it's not an addictive drug.)
> In your bf's studies, did he find anything regarding Effexor? My son has been taking that for about 5 years or so - he's done fairly well with that, but like many, is hoping for Reboxetine to be approved.
My BF was in grad school back in the early '80s, and although fluoxetine was around (though not yet available for clinical use), I don't think that venlafaxine was. But Effexor has a good reputation as an antidepressant.
> > But Topamax is probably safer and more tolerable than Dilantin is. (It does tend to cause weight loss, so if your son is a skinny guy it may not be the best choice.)
I wasn't clear here. Topamax, not Dilantin, is the one that's known for causing weight loss. Most anticonvulsants are sedating rather than activating.
> Do you know of any other threads that might be helpful in our quest for knowledge?
No, but you might search the archives for the words "epilepsy," "seizure," "Dilantin," etc.
Best,
-elizabeth
Posted by PattyG on October 8, 2001, at 18:55:32
In reply to Re: elusive putative seizure disorder, posted by Elizabeth on October 6, 2001, at 11:19:54
> I would imagine he uses daily.Would he tell you if you asked? (A lot of pot smokers don't do it every day; it's not an addictive drug.)
/////Hm-m-m-m - well are you sure?:) Because that *is* his response to how often he uses! Personally, I think it's been almost as a medicine for him - he doesn't get "high" and "dopey" or whatever.......I think he just feels better, in general, with it. (Also - I awakened the other night to hear a snippet on t.v. about Reboxetine - *thought* I heard that it is going to be approved and available by 2002? Anyone know? Is it made by Lilly?)
I wasn't clear here. Topamax, not Dilantin, is the one that's known for causing weight loss. Most anticonvulsants are sedating rather than activating.
////Oh, yes, well that makes sense - although I had heard that Topamax results in weight loss for some. Wonder how that works if it doesn't stimulate?
Again, thanks so much for your responses.
PattyG
Posted by Elizabeth on October 9, 2001, at 12:57:52
In reply to Re: elusive putative seizure disorder » Elizabeth, posted by PattyG on October 8, 2001, at 18:55:32
> > I would imagine he uses daily.
>
> Would he tell you if you asked? (A lot of pot smokers don't do it every day; it's not an addictive drug.)
>
> Hm-m-m-m - well are you sure?:) Because that *is* his response to how often he uses!What is? I'm confused.
> Personally, I think it's been almost as a medicine for him - he doesn't get "high" and "dopey" or whatever.......I think he just feels better, in general, with it.
A lot of drug users are self-medicating. I've seen it a lot.
> (Also - I awakened the other night to hear a snippet on t.v. about Reboxetine - *thought* I heard that it is going to be approved and available by 2002? Anyone know? Is it made by Lilly?)
I don't know when, if ever, we'll have it in the U.S., but it's *not* made by Lilly.
> > I wasn't clear here. Topamax, not Dilantin, is the one that's known for causing weight loss. Most anticonvulsants are sedating rather than activating.
>
> Oh, yes, well that makes sense - although I had heard that Topamax results in weight loss for some. Wonder how that works if it doesn't stimulate?I don't know; I guess it just decreases appetite. Stimulation doesn't necessarily equate to decreased appetite; I found the antidepressant Nardil to be very activating, and it made me hungry all the time. And on the other hand, when I'm depressed I feel tired and slowed-down, but I don't feel like eating at all.
> Again, thanks so much for your responses.
Sure. It's nice talking to you.
Take care.
-elizabeth
Posted by PattyG on October 9, 2001, at 13:47:36
In reply to Re: elusive putative seizure disorder » PattyG, posted by Elizabeth on October 9, 2001, at 12:57:52
Posted by Elizabeth on October 9, 2001, at 12:57:52
What is? I'm confused./////I was referring to the fact that when I asked how often he uses, he said it was daily.
I don't know when, if ever, we'll have it in the U.S., but it's *not* made by Lilly.//////Bummer. His psychiatrist said he'd definitely be a candidate for Reboxetine if/when it's approved.
I don't know; I guess it just decreases appetite. Stimulation doesn't necessarily equate to decreased appetite; I found the antidepressant Nardil to be very activating, and it made me hungry all the time. And on the other hand, when I'm depressed I feel tired and slowed-down, but I don't feel like eating at all.///I guess that just goes to prove that we all react differently to the various medications.
Take care.///Will do:)
PattyG
Posted by Elizabeth on October 9, 2001, at 14:04:23
In reply to Re: elusive putative seizure disorder, posted by PattyG on October 9, 2001, at 13:47:36
> I was referring to the fact that when I asked how often he uses, he said it was daily.
So he actually said that. Okay. (I was confused since you originally said, "I would imagine he uses daily.")
> Bummer. His psychiatrist said he'd definitely be a candidate for Reboxetine if/when it's approved.
Yes, I think it would be worth trying. I know I'd want to consider switching if reboxetine were available (I take desipramine, one of the old tricyclics).
I'll be interested to hear if you find out anything new about your son's problems. Give him my regards.
best,
-elizabeth
Posted by PattyG on October 9, 2001, at 17:01:10
In reply to Re: elusive putative seizure disorder » PattyG, posted by Elizabeth on October 9, 2001, at 14:04:23
Elizabeth wrote)
Yes, I think it would be worth trying. I know I'd want to consider switching if reboxetine were available (I take
desipramine, one of the old tricyclics)./////Are you also taking anything as a preventative for seizures? If so, I was under the impression that the tricyclics were a real big no-no.
I'll be interested to hear if you find out anything new about your son's problems. Give him my regards.
////I'll keep you posted - his tests are completed (except for blood-work for Dilantin levels) and then has appt. with the neurologist.
PattyG
Posted by Elizabeth on October 10, 2001, at 13:31:28
In reply to Re: elusive putative seizure disorder, posted by PattyG on October 9, 2001, at 17:01:10
> Are you also taking anything as a preventative for seizures?
Yes, I've been taking Trileptal since this last "incident."
> If so, I was under the impression that the tricyclics were a real big no-no.
They're not absolutely contraindicated, but they should be used with caution.
> I'll keep you posted - his tests are completed (except for blood-work for Dilantin levels) and then has appt. with the neurologist.
That's good. What tests did he have?
-elizabeth
Posted by PattyG on October 10, 2001, at 14:57:05
In reply to Re: elusive putative seizure disorder » PattyG, posted by Elizabeth on October 10, 2001, at 13:31:28
He had a MRI, MRA, and EEG. The first time, he had a Cat scan and MRI. They ordered a MRA this time because my mother died of a ruptured brain aneurysm (at the age of 84.) (But from what I read about that, you sometime have to practically do a spinal tap to conclusively detect an aneurysm!)
PattyG
Posted by Elizabeth on October 11, 2001, at 11:18:35
In reply to Re: elusive putative seizure disorder, posted by PattyG on October 10, 2001, at 14:57:05
> He had a MRI, MRA, and EEG. The first time, he had a Cat scan and MRI. They ordered a MRA this time because my mother died of a ruptured brain aneurysm (at the age of 84.) (But from what I read about that, you sometime have to practically do a spinal tap to conclusively detect an aneurysm!)
Jeez, that's rough. I've had those tests done, and they all were normal. I also had a SPECT scan which was "abnormal," but who knows what that means?!
-elizabeth
Posted by PattyG on October 11, 2001, at 12:23:16
In reply to Re: elusive putative seizure disorder » PattyG, posted by Elizabeth on October 11, 2001, at 11:18:35
Jeez, that's rough. I've had those tests done, and they all were normal. I also had a SPECT scan which was
"abnormal," but who knows what that means?!////Can't get the doc to elaborate? Why did they decide to conduct that particular test? (At what point?)
PattyG
Posted by Elizabeth on October 12, 2001, at 9:55:32
In reply to Re: elusive putative seizure disorder, posted by PattyG on October 11, 2001, at 12:23:16
> Can't get the doc to elaborate?
I don't think that they understand the results of the SPECT scan, they just know that there's something unusual or abnormal about it. Functional brain imaging is still pretty new, and our understanding of it and how to interpret the results is limited.
> Why did they decide to conduct that particular test? (At what point?)
After I had a normal EEG and MRI (both of which I had already had several times in the past with no abnormal results). SPECT measures blood flow to different parts of the brain. I believe that mine showed increased blood flow in the area of my thalamus.
-elizabeth
Posted by PattyG on October 17, 2001, at 18:08:34
In reply to Re: elusive putative seizure disorder, posted by PattyG on September 29, 2001, at 9:23:16
Elizabeth and all,
My son was originally prescribed 300 mgs. of Dilantin (daily) We misunderstood - he only took 2 capsules (200 mgs.) and then began with 300 mgs. Did this 2 weeks before blood work. Nurse called today and said doc was concerned as his levels were low and to increase to 400 mgs. per day. Normal is 10-20 and he is at 4. This is after 2 solid weeks on 300 mgs. and 2 weeks prior to that on 200 mgs. I need the "mildly retarded" version of what all this means:) He is already unhappy with this med as he feels very groggy (says he's getting more "hairy" and skin is more oily.) Also...........maybe it's my imagination, but I think he's talked more to me in the past 4 days than in the past 4 months! We had company Sat. & Sun. and he actually mingled a bit and TALKED. Is this type medication also a mood elevator as well as mood stabilizer??? Input please!
PattyG
Posted by Elizabeth on October 19, 2001, at 12:18:59
In reply to Re: elusive putative seizure disorder, posted by PattyG on October 17, 2001, at 18:08:34
> My son was originally prescribed 300 mgs. of Dilantin (daily) We misunderstood - he only took 2 capsules (200 mgs.) and then began with 300 mgs.
How did that miscommunication happen? (Starting at a lower dose and then increasing it actually makes sense.)
> Nurse called today and said doc was concerned as his levels were low and to increase to 400 mgs. per day. Normal is 10-20 and he is at 4. This is after 2 solid weeks on 300 mgs. and 2 weeks prior to that on 200 mgs. I need the "mildly retarded" version of what all this means:)
Two weeks should be plenty of time to achieve steady state levels. How long before the blood draw did he take the Dilantin?
> He is already unhappy with this med as he feels very groggy (says he's getting more "hairy" and skin is more oily.)
The sedation is a common side effect of anticonvulsants. The other stuff, I'm not sure about (it sounds sort of hormone-ish, tho').
> Also...........maybe it's my imagination, but I think he's talked more to me in the past 4 days than in the past 4 months! We had company Sat. & Sun. and he actually mingled a bit and TALKED. Is this type medication also a mood elevator as well as mood stabilizer??? Input please!
Some people get relief from anxiety when they take anticonvulsants. That might be what your son is experiencing. It sounds like he has some social anxiety. No?
-elizabeth
Posted by PattyG on October 20, 2001, at 19:22:52
In reply to Re: elusive putative seizure disorder » PattyG, posted by Elizabeth on October 19, 2001, at 12:18:59
Elizabeth wrote:
How did that miscommunication happen? (Starting at a lower dose and then increasing it actually makes sense.)////The directions were: take 1 capsule every 8 hours.........so at first glance, it seemed that one would only be able to take 2 a day............(unless you were to set an alarm!) He gets up early and goes to bed early. (Anyway, it was our fault.)
> Nurse called today and said doc was concerned as his levels were low and to increase to 400 mgs. per day. Normal is 10-20 and he is at 4. This is after 2 solid weeks on 300 mgs. and 2 weeks prior to that on 200 mgs. I need the "mildly retarded" version of what all this means:)
Two weeks should be plenty of time to achieve steady state levels. How long before the blood draw did he take the Dilantin?
/////Not sure I'm clear on this..........let's see.......he took his Dilantin the night before, but not the morning of his blood work........or, do you mean........that he had been on the medication for a total of 4 weeks prior to the test?
Some people get relief from anxiety when they take anticonvulsants. That might be what your son is experiencing. It sounds like he has some social anxiety. No?////I guess I wouldn't say that he actually has an anxiety "disorder," but that he is probably uncomfortable, especially, in large groups. He just isn't very social in general, but I'm not sure I could label him as "anxious." It's strange, I have, however, seen him actually perspire during a conversation when he get intense about the subject (not angry) just somewhat intense.
PattyG
Posted by Elizabeth on October 22, 2001, at 10:20:56
In reply to Re: elusive putative seizure disorder, posted by PattyG on October 20, 2001, at 19:22:52
> ////The directions were: take 1 capsule every 8 hours.........so at first glance, it seemed that one would only be able to take 2 a day............(unless you were to set an alarm!) He gets up early and goes to bed early. (Anyway, it was our fault.)
Ahh, I see. No, every 8 hours means one upon awakening, one midday, and one at bedtime. The intervals don't have to be exactly 8 hours. :-)
> Two weeks should be plenty of time to achieve steady state levels. How long before the blood draw did he take the Dilantin?
>
> /////Not sure I'm clear on this..........let's see.......he took his Dilantin the night before, but not the morning of his blood work........That's what I wanted to know, yes.
> ////I guess I wouldn't say that he actually has an anxiety "disorder," but that he is probably uncomfortable, especially, in large groups.
The difference between "anxiety" and "anxiety disorder" isn't clear-cut, anyway. But yes, that's what I meant by social anxiety.
> He just isn't very social in general, but I'm not sure I could label him as "anxious."
Does he tend to avoid people/try to be alone when he can?
> It's strange, I have, however, seen him actually perspire during a conversation when he get intense about the subject (not angry) just somewhat intense.
A lot of people have that kind of problem (sweating, trembling, etc.) when they're nervous.
Give your son my best. :-)
-elizabeth
Posted by PattyG on November 18, 2001, at 20:17:29
In reply to Re: elusive putative seizure disorder » PattyG, posted by Elizabeth on October 22, 2001, at 10:20:56
//Well folks - I'm old, but this one takes the cake for me! Have a friend who is a nurse and she knows of our situation and she posted a message requesting info on Dilantin levels and if pot would prevent medication from reaching proper levels.........I'm just going to cut and paste the question and response. VERY interesting. Will be interested to know what you folks think.
> Do you know if Marijuana effects Dilantin levels. I'm a RN and I have
> a patient that has low Dilantin levels even though his Dilantin had
> been increase several times. I remember years ago, I had a transplant
> patient that had 0 Cyclosporin levels and it was later found that he
> was smoking pot. Can pot or any other street drug effect Dilantin
> levels? Thanks for any insight to this dilemma
--
Dr. Paul Consroe
Professor of Pharmacology and Toxicology
Arizona Health Sciences Center
University of Arizona
Tucson AZ 85721We studied this 'potential' drug interaction more than 25 years ago. As
I recall, in the majority of cases there was no change in dilantin
levels. This was unexpected since the pharmacology of marijuana on liver
enzymes would predict that there might be an INCREASE in dilantin
levels. On the clinical level, there was a potentiation of dilation's
antiepileptic effect. In other words, marijuana was an anticonvulsant
itself, and when given with dilantin, there was a greater protective
effect against the recurrent (grand mal, and complex partial =
psychomotor) seizures.Thus, in your case below, maybe you should check for 'patient
compliance' of his his/her dilantin meds.
I hope that this helps.
Sincerely,
pc
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