Psycho-Babble Medication Thread 79454

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Re: elusive putative seizure disorder

Posted by Squiggles on September 24, 2001, at 20:16:26

In reply to Re: elusive putative seizure disorder, posted by Elizabeth on September 24, 2001, at 19:37:02

> Thanks to everyone who posted.

........

I just posted a question elsewhere asking
if it's possible that while taking more than
one medication (psychoactive) and removing
one, under certain dose conditions, may not
promote "seizoid" type conditions. I hope
you find an answer to your question. You are
quite right to say that after some weeks the
EEG may not show anything in my case, but since
I had these "seizuresa" on w/d attempts before,
who knows, maybe there are tracks in my brain.

BTW are you the same Elizabeth I "met" at
alt.support.depression.medication? I recall
being in a conversation with Elizabeth and
EricLostBoyinNC;

Squiggles
>

 

Re: elusive putative seizure disorder Elizabeth

Posted by Mitch on September 24, 2001, at 23:09:58

In reply to Re: elusive putative seizure disorder, posted by Elizabeth on September 24, 2001, at 19:37:02

> > I was on it for a while, but I am real sensitive to nausea and it made me kind of nauseous and "wired" (I doubt if such a low dose could worsen depression-it might help some).
>
> How much were you taking?

I started at 75mg twice daily (150mg/day) for about a week, then increased to 75mg tid (225mg/day)for another week, then to 300mg/day-that is when I experienced the nausea and I was waking up a little earlier than usual and was getting a little hypomanic on it (not grouchy or elated really-just wired feeling and my thoughts seem to race). It was a switch from Neurontin (not an add-on), so a lot of it could have been Neurontin withdrawal. I usually require 1/4-1/2 the dosage of practically *anything* to get the same response, too, so that needs to be taken into consideration.

> > I have talked to others here who seem to get by fine on it, though. Do you or your pdoc wonder if the desipramine is setting these episodes off? Keep us posted and get better.
>
> It's not the desipramine alone (although it might have contributed this time -- TCAs do lower the seizure threshhold), because I've only been taking it for a couple months.

That sounds very suspicious, Elizabeth.

 

Re: elusive putative seizure disorder Elizabeth

Posted by shelliR on September 24, 2001, at 23:18:13

In reply to elusive putative seizure disorder, posted by Elizabeth on September 24, 2001, at 12:12:59

>Hi Elizabeth.

I'm glad your SO came home. What would have happened if he didn't come home, (or you didn't have a SO?) Would you have come to in the same way, just having no one to tell you what happened?

Anyway, my friend had strange seizures that they never did track down (but she had been abused, and that is not uncommon to have brain changes). And they put her on some anti-seizure med and she stopped having them. She didn't go completely out during her's, but she'd be driving and everything would become totally distorted and she'd have to pull over, and somehow or other they determined she was having seizures. Driving is sort of hypnotic, so maybe the threshold was lowered. She's the same friend with DID, who had different EEGs depending on who was "out", but these episodes were not related to alters taking over. And having depression for a long time can also create strange brain changes or having brain abnormalities can create depression, as you well know.

I've been of no help (didn't try, cause it's not anything I know about), but I'm glad that you had support from your family and SO, and you don't sound as scared as perhaps you were when you first went to the hospital.

Take care,
Shelli

 

Re: elusive putative seizure disorder shelliR

Posted by Mitch on September 24, 2001, at 23:55:34

In reply to Re: elusive putative seizure disorder Elizabeth, posted by shelliR on September 24, 2001, at 23:18:13

> Anyway, my friend had strange seizures that they never did track down (but she had been abused, and that is not uncommon to have brain changes). And they put her on some anti-seizure med and she stopped having them. She didn't go completely out during her's, but she'd be driving and everything would become totally distorted and she'd have to pull over, and somehow or other they determined she was having seizures. Driving is sort of hypnotic, so maybe the threshold was lowered. She's the same friend with DID, who had different EEGs depending on who was "out", but these episodes were not related to alters taking over. And having depression for a long time can also create strange brain changes or having brain abnormalities can create depression, as you well know.

Shelli,

Hope you don't mind me asking a question about your friend:
1) Was your friend taking any antidepressants during the time she had the seizures while she was driving?
I am asking this because I have taken probably 2/3 of all the AD's that have ever been made and only one(Prozac)set off nightime hallucinations while I was driving-where the car seemed to levitate off the ground (about ten foot or so), while I was driving (about 60mph). This was accompanied by powerful panic symptoms also. I have also experienced deja vu episodes while I was taking Prozac. I have been on Neurontin/Klonopin/Depakote at different times/combinations/dosages over the last 2-3 years and not experienced any more of those illusions or hallucinations.

Mitch

 

Re: elusive putative seizure disorder

Posted by Zo on September 25, 2001, at 0:55:59

In reply to Re: elusive putative seizure disorder Elizabeth, posted by shelliR on September 24, 2001, at 23:18:13

So *that's* where you were, Elizabeth! Gee, all the really interesting things happen to you. . .

In my travels in the Wacky World of Seizures, I can advise, see a epileptologist, or a knowledgeable pdoc. . going after a sz. dx, esp, with a single espisode, with a neurologist. . well, you'd think they were there to *help* people, wouldn't you. That shows what you know. . .

Shelli, those driving episodes were exactly like mine, it was many years before I learned that is TLE. .

. .. and Mitch, when I had them most frequently, I was not on any medication at all. . but I was newly-sick with what later became to be called CFS. But I've had them since childhood. . unfortunately, I don't get the good seizures either. .wow! Floating! Mine are nearly entirely photosensitive, even the right piece of Flash animation can "hypnotize" me. How pedestrian.

It *never* ends. .. Good Luck, Elizabeth!!!

Zo

 

Re: elusive putative seizure disorder Elizabeth

Posted by SLS on September 25, 2001, at 1:16:44

In reply to elusive putative seizure disorder, posted by Elizabeth on September 24, 2001, at 12:12:59

> Anyway, it looks like I'm going to be seeing a neurologist, although I don't know how good the chances are that they'll be able to find a cause for this episode (or previous ones).


Hi again.

You're a pretty smart girl (chuckle), so I guess you've already approached this thing empirically? You might have to be a Sherlock Holmes and map out who, what, when, and where to see if you can come up with any temporal associations - other than lobes (chuckle again).


- Scott

 

Re: elusive putative seizure disorder Squiggles

Posted by Elizabeth on September 25, 2001, at 17:30:23

In reply to Re: elusive putative seizure disorder, posted by Squiggles on September 24, 2001, at 20:16:26

Squiggles --

Hi there. Yes, we've spoken on Usenet in the past. (Eric, incidentally, has tried to post to P-B several times under various names, but each time he's rapidly gotten himself blocked.)

> I just posted a question elsewhere asking
> if it's possible that while taking more than
> one medication (psychoactive) and removing
> one, under certain dose conditions, may not
> promote "seizoid" type conditions.

"Can withdrawal of psychoactive medication produce seizures," you mean? Yes, depending on the medication. Definitely with anticonvulsants (including benzodiazepines). Some medications, such as SSRIs, haven't been around long and although they do cause withdrawal symptoms if one stops taking the drug, it's not known specifically what's going on that is causing the withdrawal symptoms.

-elizabeth

 

Re: elusive putative seizure disorder Zo

Posted by Elizabeth on September 25, 2001, at 17:30:45

In reply to Re: elusive putative seizure disorder, posted by Zo on September 25, 2001, at 0:55:59

> So *that's* where you were, Elizabeth! Gee, all the really interesting things happen to you. . .

As in, "a curse: may you live in interesting times?"

> In my travels in the Wacky World of Seizures, I can advise, see a epileptologist, or a knowledgeable pdoc. . going after a sz. dx, esp, with a single espisode, with a neurologist. . well, you'd think they were there to *help* people, wouldn't you. That shows what you know. . .

I'm concerned about all the odd but seemingly isolated episodes I've had over the years. You've known me (online, anyway, which is really the only place I talk much about this stuff) for a while -- do you have any opinions or thoughts?

> Shelli, those driving episodes were exactly like mine, it was many years before I learned that is TLE. .

Driving dissociation (aka "highway hypnosis" -- love that alliteration)? That can happen to anybody. (To quote a professor of mine: "how many miles have *you* driven in stage IV sleep?")

> It *never* ends. .. Good Luck, Elizabeth!!!

Thanks...I appear to need it.

-e

 

Re: elusive putative seizure disorder SLS

Posted by Elizabeth on September 25, 2001, at 17:35:55

In reply to Re: elusive putative seizure disorder Elizabeth, posted by SLS on September 25, 2001, at 1:16:44

> You might have to be a Sherlock Holmes and map out who, what, when, and where to see if you can come up with any temporal associations - other than lobes (chuckle again).

< groan > :-)

I've looked at the various episodes from just about every angle I can think of, and no single thing seems to stand out as a possible cause. Very frustrating.

-elizabeth

 

Re: elusive putative seizure disorder

Posted by Squiggles on September 25, 2001, at 17:49:13

In reply to Re: elusive putative seizure disorder Squiggles, posted by Elizabeth on September 25, 2001, at 17:30:23

> Squiggles --
>
> Hi there. Yes, we've spoken on Usenet in the past. (Eric, incidentally, has tried to post to P-B several times under various names, but each time he's rapidly gotten himself blocked.)
>
> > I just posted a question elsewhere asking
> > if it's possible that while taking more than
> > one medication (psychoactive) and removing
> > one, under certain dose conditions, may not
> > promote "seizoid" type conditions.
>
> "Can withdrawal of psychoactive medication produce seizures," you mean? Yes, depending on the medication. Definitely with anticonvulsants (including benzodiazepines). Some medications, such as SSRIs, haven't been around long and although they do cause withdrawal symptoms if one stops taking the drug, it's not known specifically what's going on that is causing the withdrawal symptoms.
>
> -elizabeth


Thanks elizabeth - uhm yeah Eric is a racist, that
is the only thing I have against him - he is a very
good writer. I left the group on account of his vices.

About the removal of a psychoactive drug - yep, definitely
it is well known that benzo w/d esp. if too fast can
bring on seizure (this is plentifully documented in such
places as The Merck Manual - this is known. But what
I mean in particular, is whether one drug rises in blood
level, when another is removed -- thus causing some
sort of seizure or seizoid activity.

Squiggles

 

Re: elusive putative seizure disorder Mitch

Posted by shelliR on September 25, 2001, at 17:53:50

In reply to Re: elusive putative seizure disorder shelliR, posted by Mitch on September 24, 2001, at 23:55:34

> > Anyway, my friend had strange seizures that they never did track down (but she had been abused, and that is not uncommon to have brain changes). And they put her on some anti-seizure med and she stopped having them. She didn't go completely out during her's, but she'd be driving and everything would become totally distorted and she'd have to pull over, and somehow or other they determined she was having seizures. Driving is sort of hypnotic, so maybe the threshold was lowered. She's the same friend with DID, who had different EEGs depending on who was "out", but these episodes were not related to alters taking over. And having depression for a long time can also create strange brain changes or having brain abnormalities can create depression, as you well know.
>
> Shelli,
>
> Hope you don't mind me asking a question about your friend:
> 1) Was your friend taking any antidepressants during the time she had the seizures while she was driving?
> I am asking this because I have taken probably 2/3 of all the AD's that have ever been made and only one(Prozac)set off nightime hallucinations while I was driving-where the car seemed to levitate off the ground (about ten foot or so), while I was driving (about 60mph). This was accompanied by powerful panic symptoms also. I have also experienced deja vu episodes while I was taking Prozac. I have been on Neurontin/Klonopin/Depakote at different times/combinations/dosages over the last 2-3 years and not experienced any more of those illusions or hallucinations.
>
> Mitch

My friend was on so many medications; I don't know which ADs at the time. I couldn't believe how many meds she could tolerate without any side effects. And her driving experiences were happening both day and night. They were not illusions, hallucinations, or mere dissociative episodes. It was more as if she had the normal hypnotic experience many people have had, but the second step was a seizure and loss of memory. And when they added the anti-seizure med, she was able to drive again; it apparently stopped whatever seizure-like activity she was having.

Wow, cars levitating off the ground. If it wasn't so scary, it would be a lot of fun.

Shelli

 

Re: elusive putative seizure disorder Elizabeth

Posted by v on September 25, 2001, at 18:30:46

In reply to elusive putative seizure disorder, posted by Elizabeth on September 24, 2001, at 12:12:59

oh elizabeth... i am just so glad you're alright...
it's funny the connections one makes here... i've come to "care" about you, i've enjoyed our conversations and if there's ever anything i can help you with, i hope you will feel free to ask...
and thank you for replying to my post... like i had said, i was worried and paranoid at the same time... :) and i am quite willing to discuss the did or ptsd with you if you ever want more informaton

be well, be strong, know how wonderful you are, and how much you mean to so any people on this board...
i hope you find your answers soon

blessings,
v

> Hi everyone.
>
> Last week (Tuesday, I think) I had a seizure (complex partial) or something. My BF says that when he got home from work, he found me slumped over at the computer, making gurgling sounds (he thought I might have swallowed my tongue or something). He was really scared because of what happened back in February (see http://www.dr-bob.org/babble/20010327/msgs/58035.html). After I appeared to be conscious again, he said that I was crying and acting scared and so forth.
>
> He called 911 and a whole bunch of cops and EMTs descended on our house (at least they didn't send in the fire department). The first thing I remember after I blacked out was being in my room with my boyfriend and several EMTs and cops. I was sobbing, for some reason of which I'm not aware. (Something similar happened in February -- I was in and out of the coma, but when I appeared "awake" I was acting scared and crying, according to my BF and parents.) I was sort of confused and disoriented, so I just went with the EMS folks. I spent a couple nights in the hospital, which is why I haven't been posting lately. My mother and sister came into town to visit me. My CAT scan and EEG were both normal. I haven't gotten the results of the blood tests yet (I think they did the standard ones plus a desipramine serum level and something else, I can't remember what). My pdoc gave me a script for a low dose of Trileptal. (Well, he says it's low -- I don't know what the typical therapeutic dose range is for oxcarbazepine. I'm taking 300 mg/day.) Does anybody have anything to say about it, good, bad, or otherwise?
>
> Anyway, it looks like I'm going to be seeing a neurologist, although I don't know how good the chances are that they'll be able to find a cause for this episode (or previous ones).
>
> I hope you're all well.
>
> -elizabeth

 

Re: elusive putative seizure disorder Elizabeth

Posted by Zo on September 28, 2001, at 0:38:56

In reply to Re: elusive putative seizure disorder Zo, posted by Elizabeth on September 25, 2001, at 17:30:45

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?

All my best,
Zo

 

Re: elusive putative seizure disorder

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

 

Re: elusive putative seizure disorder

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

 

Re: elusive putative seizure disorder

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,
> PattyG

Hi,

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.

 

Re: elusive putative seizure disorder PattyG

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

 

Re: elusive putative seizure disorder SLS

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

 

Re: elusive putative seizure disorder Elizabeth

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

 

Re: elusive putative seizure disorder Elizabeth

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

 

Re: elusive putative seizure disorder PattyG

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

 

Re: elusive putative seizure disorder

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

 

Re: elusive putative seizure disorder

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

 

Re: elusive putative seizure disorder 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

 

Re: elusive putative seizure disorder 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


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