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The strangest side effects on Lamictal & Orfiril (valproic acid)


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#1 JustAnotherNut

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Posted 06 March 2011 - 05:36 PM

First off, the meds do work. Seizure free for over a year now, so the side effects might be worth it...

Now for the side effects. I have the usual ones: I've gained more than enough weight to sustain me for a short war. My fingers sometimes trembles to the point were using my iPhone to type anything is next to impossible. My hairline has slowly receded, and what's left is slowly turning grey. I'm having a hard time getting anything done. I'm tired as h**l, but can't fall asleep. My memory and attention span is shot to pieces! Oh, and last but not least, my skin looks at least five years older than a year ago :( And I'm not afraid to admit that i'm vain, and feel depressed by getting bold, grey, fat and shaky way to early in life ;)

Now for the stranger side effects: (I hope this isn't out of line!)

I keep waking up several times a night with more or less painful erections! More "more" than "less" actually. (I told you it was strange) That is if I fall asleep in the first place! Sometimes I find that I wake up giving the already awake member a bit too much attention. To make it crystal clear, I don't wake up and then start, I'm waken up by it. I'm not feeling turned on or anything when I wake up, so why this happens don't know. This all started after I got up to the therapeutic levels of the meds (300mg Lamictal and 1200mg Orfiril), so I think it might be related. It took me a while, and I felt rather embarrassed, to ask my neurologist about this, and she (which didn't make it less embarrassing) said she'd never heard of this before. After we talked about it for a bit, she reminded me that it could be worse since impotence can occur from the same meds. I guess that's true :)

The second thing is that I sometimes, for lack of a better word, simply crash. I'm on the coach watching tv or reading, and then the need to sleep is so overwhelming that I have no chance of staying awake. I usually wake up 20-30 minutes later, having a really hard time doing so. I keep on yawning like mad, for close to an hour afterwards. Sometimes I feel paralyzed as well, but not sure if I'm awake or not, so it might be a recurring dream. I know that the need for sleep might be related to the fact that I'm not getting enough sleep on a regular basis, but still... The need for sleep can happen at other times as well, but so far I haven't fallen asleep on the metro or a bus.

H.

PS! If anyone has any good tips regarding the more common side effects I would love to hear them. Especially regarding the hairloss, since that bothers me the most.
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#2 crtclms

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Posted 06 March 2011 - 06:01 PM

I can't say what you are and aren't willing to tolerate. I don't know what medication you are taking, but if the rarer side effects really are being caused by your AC, well, that would be too much for me, I would switch. But I know how hard it can be to find a good AC, my husband is on 3 ACs, and still has seizures about once a week.

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#3 ninetynine

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Posted 06 March 2011 - 06:24 PM

I don't think what you have written is at all out of line. If we don't talk about the unusual side effects of a medication ... well, where does that leave us? Alone and wondering.

I've been taking Lamictal a long time. I take it for seizures too. I seem to be able to swallow pretty much anything without side effects. It would be a pity to have to switch meds, but this sounds disruptive to me. I'm really sorry it's not working out for you.

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#4 Fantome D

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Posted 08 March 2011 - 09:56 AM

Lamictal (lamotrigine) and Orfinil (valproic acid) areis without a doubt a "lots of possible side effects in a box" meds, some of them similar from 1 med or the other. Now for the reason of yours...

Let's get on with the cool medical stuff.

Valproic acid from wikipedia explains your "normal" (in bold - italic) side effects :
Common side effects are dyspepsia and/or weight gain. Less common are fatigue, peripheral edema, acne, dizziness, drowsiness, hair loss, headaches, nausea, sedation and tremors.
There have also been reports of cognitive dysfunction, Parkinsonian symptoms

Lamotrigine from wikipedia explains your "normal" (in bold - italic) side effects :
Side effects include loss of balance or coordination, double vision, crossed eyes, blurred vision, dizziness and lack of coordination, drowsiness, insomnia, anxiety, vivid dreams or nightmares, dry mouth, mouth ulcers, memory and cognitive problems, mood changes, runny nose, cough, nausea, indigestion, abdominal pain, weight loss, missed or painful menstrual periods, and vaginitis. The side-effect profile is different for different patient populations

Lamotrigine is obviously the culprit for your "strange" side effects, let me show you why :
- The novel anticonvulsant lamotrigine prevents dopamine depletion in C57 black mice in the MPTP animal model of Parkinson's disease.
http://www.ncbi.nlm..../pubmed/8289584
- Unlike valproate and topiramate, lamotrigine provided a significant neuroprotection against MPTP in maintaining these levels at 99%, 74% and 58% respectively and reducing the induced apoptosis. Altogether, the data indicate that lamotrigine limits dopaminergic neuronal death in the substantia nigra and promotes striatal dendrites sprouting.
http://cat.inist.fr/...cpsidt=18878838
- Lamotrigine's AD/dopaminergic action
http://www.dr-bob.or...msgs/50722.html
- This board has people speaking that lamotrigine increased their libido and orgasm capabilities, some to outrageous proportions
http://www.crazyboar...is/page__st__20


These info are anecdotal on their influence on humans since it's on mice and/or patient reported. BUT, the thing is, dopamine is "the" major libido enhancer and orgasm facilitator. It is absolutely possible that this simple dopaminergic influence from Lamotrigine is the reason for your strong nightly erections and increased libido. Simple as that.

The other possibilitor would be serotonergic with antagonism of the 5-HT2c serotonin receptor, but I think that it is highly improbable with the meds you're taking.

Hope this helps.
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#5 JustAnotherNut

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Posted 09 March 2011 - 03:10 PM

Lamictal (lamotrigine) and Orfinil (valproic acid) areis without a doubt a "lots of possible side effects in a box" meds, some of them similar from 1 med or the other. Now for the reason of yours...

Let's get on with the cool medical stuff...

Lamotrigine is obviously the culprit for your "strange" side effects, let me show you why...


Thanks!

This was very helpful. I knew about the "normal" side effects, but couldn't find anything about the stranger ones anywhere. I had an appointment with my neurologist yesterday, but she still wasn't sure about what caused them. Unfortunately I wasn't able to take this post with me to show her, but maybe next time.
The rather sudden sleepiness is -again according to my neurologist- most likely a result of not getting enough sleep over several nights. And feeling paralysed when I wake up is most likely just what it sounds like, sleep paralysis. This sounds quite reasonable to me, but since it occurs rather seldom, we decided to see how things go before getting a sleep analysis done. Which is OK by me, since I've spent more than enough nights hooked up to a bunch of wires -64 electrodes for 72 hours straight the last couple of times- during my epilepsy observations/diagnostics. Not my favorite activity ;)

Now if anyone could explain one final thing: Why the heck do they have to give Lamictal that godawful flavor? Is it some kind of sick joke? :lol: Swallowing them down with an artificial sweetened lemonade is something you'll only do once. Pretty sure that combo is the worst tasting anything I have ever had in my mouth :wacko:
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#6 nalgas

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Posted 09 March 2011 - 04:10 PM

The rather sudden sleepiness is -again according to my neurologist- most likely a result of not getting enough sleep over several nights.

For me, that's definitely what it is, and it's independent of what meds I'm on. It didn't used to be as dramatic as that, but as the whole seizure thing progressed (when they first started, they were so infrequent and mild that no one even guessed that's what was going on, and it took several years for them to become a regular occurrence and get diagnosed), my brain seems to have developed an automatic shutoff valve or something (out of a sense of self-preservation, I like to imagine/pretend). Not getting enough sleep is a very good way to provoke seizures in many people who are already predisposed toward having them, and some of us even more so than others.

When I'm as far behind on my sleep as you're describing, I can feel my brain acting almost like I'm unmedicated, and if it keeps up long enough, a seizure generally is the end result. I tend to spontaneously fall asleep before that, though, like what you're saying. It's kind of annoying sometimes when I want to or should be staying awake for whatever reason, but it beats the alternative. It's also sometimes funny, because it'll happen in the middle of doing something while I'm sitting up, and I'll wake up anywhere from 15 minutes to an hour or two later, literally not having moved an inch, with my laptop still on my lap with my fingers on the keys or still holding a book in my hands open to the page I was reading.

Getting enough sleep pretty much stops that from happening entirely for me.

Now if anyone could explain one final thing: Why the heck do they have to give Lamictal that godawful flavor? Is it some kind of sick joke?

Sadly, no. If it were, that would mean it's intentional and something they could choose not to do, but unfortunately the chemical compound itself just happens to taste horrible. It didn't bother me too much when I was on it (although I agree it's not one of the better-tasting meds), but it seems to be particularly awful and gag-inducing for some people. Makes me wonder why they don't use some kind of coating on it like some types of pills have, or if you could get away with sticking them in one of those gel capsules without affecting the absorption too much.

#7 Fantome D

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Posted 10 March 2011 - 11:36 AM

Glad to be of help JustAnotherNut

I also take Lamictal but for my migraines. It's only 50 mg a day, twice 25 mg (small pills). It's the brand one, not the generic. They actually don't taste much of anything to me... swallow them with water. But I should also add that I have no problem swallowing pills, I can swallow like 6-8 large pills (supplements for exemple) in only 1 gulp so it just lasts 1-3 seconds in my mouth.

I didn't remembered that other symptom you have when I wrote my first reply; so you sometimes crash and have trouble with sleep attacks and post-sleep yawning... I also guess that you are sure that it's not related to seizures (which could explain these fairly easily). It sure can be simple lack of sleep but with the yawning, I suspect more. It might be related to your blood sugar level, you may need to check out for hypoglycemia if it comes to that. For me, it looks like a case of serotonin/dopamine pathway stimulation, as is usually seen with SSRI's, tricyclics and other types of antidepressants affecting dopamine. Let's see what we can get from the web for this...

Lamictal :
- 5 people out of 32716 experience postictal (following a seizure) paralysis on lamictal (http://www.ehealthme...ictal paralysis)
- Night terrors with sleep paralysis, patient blame this on lamictal, with comments of other users experiencing nightmares too (http://www.medicatio...ctal-nightmares)
- It causes insomnia as common side effect, which could explain your sleep deprivation
- CoachKara on this forum (lower in the page) comments of Lamictal causing severe yawning (http://ehealthforum....opic108890.html)
- 8 people out of 32716 experience yawning (http://www.ehealthme...trigine/yawning)
- 67 people out of 32716 experience serotonin syndrome (http://www.ehealthme...otonin syndrome)
- Yawning on lamictal 200 mg (http://www.crazymeds...c/3056-yawning/)
- Lamictal is a weak serotonin reuptake inhibitor, like the SSRI's (http://www.dr-bob.or...msgs/81710.html)
- Lamictal inhibits electrical stimulation-induced serotonin, acetylcholine and to a lower degree, noradrenaline (http://books.google....lproate&f=false)
- Altogether, the data indicates that lamotrigine limits dopaminergic neuronal death in the substantia nigra and promotes striatal dendrites sprouting. (http://www.ncbi.nlm....pubmed/17515828)

Orfinil :
- Sodium valproate increases total sleep time, reduces sleep latency and reduces the numbers of sleep-stage shifts, but has little effect on sleep architecture (http://books.google....lproate&f=false)
- Not much more on sleep or yawning on Sodium valproate...

Ok, interpretation of all of these:
- Lamictal increases dopamine due to it's preventive action on dopamine neuronal death in the substantia nigra
- Dopamine increase is often associated with increased yawning (as seen in dopamine agonists side effects)
- Some dopamine agonists induce sleep attacks, thus lamotrigine might be a collateral culprit (http://www.sleepdex.org/s21.htm or http://www.gpnoteboo...106134601821100)
- Orfinil might potentiate the theoretical lamotrigine induced sleep attacks due to it's sleep facilitator ability seen above
- If lamotrigine augments serotonin in any way, it is dose related to sleep/wake cycle, and increases general somnolence
- If lamotrigine augments acetylcholine, it consequently increases yawning, like all acetylcholine agonists
- Paralysis symptoms are weird by themselves... the only clear explanation here would be seizures, which I sure hope it's not

Well, I'm sure that there lots more information out there related to your peculiar symptoms. But I sure hope that these information lead to a better understanding of what is happening to you, and might somehow limit the test bundles you might have to go through to explain why you are sleep deprived and why you suffer sleep attacks and yawning overdrive.

Take care.


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#8 Aurochs

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Posted 10 March 2011 - 03:39 PM

Fantome D:
That's all well and good, but you haven't provided any direct evidence of this purported dopamine increase. All the clinical indicators you've given are pretty meaningless, especially the stats from ehealthme.com (8 people out of 33,000 indicates exactly nothing, certainly nothing approaching a causal relationship). The experimental evidence you've given is so indirect that it's impossible to interpret in this context (ie, it's also meaningless). Finally, I completely fail to see how any of that pharmacobabble is at all relevant to the questions the OP asked.
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#9 AnneMarie

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Posted 10 March 2011 - 04:46 PM

Anecdotally from posts on this site and another crazy site, plus a little firsthand experience...


Now for the side effects. I have the usual ones: I've gained more than enough weight to sustain me for a short war. My fingers sometimes trembles to the point were using my iPhone to type anything is next to impossible. My hairline has slowly receded, and what's left is slowly turning grey. I'm having a hard time getting anything done. I'm tired as h**l, but can't fall asleep. My memory and attention span is shot to pieces! Oh, and last but not least, my skin looks at least five years older than a year ago :( And I'm not afraid to admit that i'm vain, and feel depressed by getting bold, grey, fat and shaky way to early in life ;)

Depakote. Fat, dumb, bald, and happy. Depakote. Sleep is more apt to be Lamictal.

Now for the stranger side effects: (I hope this isn't out of line!)

I keep waking up several times a night with more or less painful erections! More "more" than "less" actually. (I told you it was strange) That is if I fall asleep in the first place! Sometimes I find that I wake up giving the already awake member a bit too much attention. To make it crystal clear, I don't wake up and then start, I'm waken up by it. I'm not feeling turned on or anything when I wake up, so why this happens don't know. This all started after I got up to the therapeutic levels of the meds (300mg Lamictal and 1200mg Orfiril), so I think it might be related. It took me a while, and I felt rather embarrassed, to ask my neurologist about this, and she (which didn't make it less embarrassing) said she'd never heard of this before. After we talked about it for a bit, she reminded me that it could be worse since impotence can occur from the same meds. I guess that's true :)

Lamictal has been reported to boost labido a little by some. However, I have not heard of what you are describing.

There are medical causes for painful and prolonged erections and I would suspect one of those over Lamictal.

I strongly encourage you to visit your GP.

The second thing is that I sometimes, for lack of a better word, simply crash. I'm on the coach watching tv or reading, and then the need to sleep is so overwhelming that I have no chance of staying awake. I usually wake up 20-30 minutes later, having a really hard time doing so. I keep on yawning like mad, for close to an hour afterwards. Sometimes I feel paralyzed as well, but not sure if I'm awake or not, so it might be a recurring dream. I know that the need for sleep might be related to the fact that I'm not getting enough sleep on a regular basis, but still... The need for sleep can happen at other times as well, but so far I haven't fallen asleep on the metro or a bus.

This could be either med or life stuff. I would bet more on Depakote than Lamictal, but who knows.

PS! If anyone has any good tips regarding the more common side effects I would love to hear them. Especially regarding the hairloss, since that bothers me the most.


Zinc, biotin, and magneseum for the hairloss. Definitely, a regular multivitimin.

Stay hydrated.

Time. Memory and fatigue often wear off over time. Same with cognitive issues. I had them on Depakote, Tegretol, and Lamictal, and for each, they eventually faded away.

Talk to your doc about sleep. maybe take most of your Lamictal dose in the morning.

See your GP asap. Odds are the erections are not related to meds, and if they are, it's likely in conjunction with something medical.

Coffee

Edited by Stacia, 10 March 2011 - 04:47 PM.

Bipolar I and ADD


#10 Fantome D

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Posted 11 March 2011 - 10:15 AM

Aurochs,
I do agree with you, but as I said in my last post, this is to help diagnose a cause to his symptoms and is intended as suggestions only. In my humble opinion, offering a couple of different leads is not a bad thing. JustAnotherNut will certainly share with his physician his symptoms and the info I've given here can become questions for him. The results will be as his physician sees fit and surely won't only be based on what I've suggested to be possible causes, it will more likely be related to what is commonly seen. So, like I said, I do agree with you that the information I've given is not backed up with studies and direct causal relationship, but they offer a different view of the situation which might help in the end.


Suggestion: to know if a med causes specific symptoms is to stop the med, have a washout period, then start it again. See if it follows the med intake.
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Laugh whenever you can, cry if it hurts, focus on what is important... always make sure that you stay yourself.

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#11 AnneMarie

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Posted 11 March 2011 - 11:59 AM

Suggestion: to know if a med causes specific symptoms is to stop the med, have a washout period, then start it again. See if it follows the med intake.

That can lead to horrible consequences. It should only be practiced at the recommendation of one's own pdoc. Since no one here is a doctor with adequate information on any member to safely suggest trying this, it should never, ever be recommended on these boards. Stopping meds is far more apt to lead to dire consequences, some life threatening. Let's exercise some responsibility.

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#12 Aurochs

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Posted 11 March 2011 - 02:22 PM

I do agree with you, but as I said in my last post, this is to help diagnose a cause to his symptoms and is intended as suggestions only.

I don't see any diagnostic utility in anything you've said.

In my humble opinion, offering a couple of different leads is not a bad thing.

No, it's not. But you didn't really offer any leads.

JustAnotherNut will certainly share with his physician his symptoms and the info I've given here can become questions for him.

Unfortunately, they won't be terribly helpful questions. You've blamed a wide variety of side effects on lamotrigine and cited evidence that doesn't back you up. You then proposed a mechanism that those side effects are based on, again using very misleading evidence. If I were a physician, I'd be pretty annoyed if a patient came in saying the same things you are.

The results will be as his physician sees fit and surely won't only be based on what I've suggested to be possible causes, it will more likely be related to what is commonly seen.

Then why would you even post any of that? This is an admission that your above two posts are diagnostically useless.

So, like I said, I do agree with you that the information I've given is not backed up with studies and direct causal relationship, but they offer a different view of the situation which might help in the end.

You presented your information as fact, and drew a very clear conclusion from it, which you also presented as fact. I fail to see how this different view could be helpful - it's just confusing.
"Extraordinary claims require extraordinary evidence." --Carl Sagan

#13 Fantome D

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Posted 11 March 2011 - 03:23 PM

Ok people. Point granted. I see alot of nonsense being said on these forums and some uncanny suggestions, so when I post, I try to be of help and base it on facts. In this case, my apologies to JustAnotherNut. And if my conclusions and suggestions did indeed lead to bad consequences, it merits double apologies. I do am a proud person but after reading my old posts, I do realize that my efforts to help were in fact misleading.

Wise thing to do: before giving an advise or information, make sure that it's based on something solid, with evidence to back it up. I'm not used to post on forums (especially serious ones) and I do need more experience, even if it's learned the hard way. My apologies to you Aurochs, Stacia and Dianthus.

Stacia
The suggestion of stopping a med was not to be done alone even if I left it unsaid (which I will not say the same way again!). Never is, never should be, unless under a physician's supervision, with his blessing and support, be it for therapeutic reasons or to shed some light on side effects causes.
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#14 AnneMarie

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Posted 12 March 2011 - 12:52 AM

Ok people. Point granted. I see alot of nonsense being said on these forums and some uncanny suggestions, so when I post, I try to be of help and base it on facts. In this case, my apologies to JustAnotherNut. And if my conclusions and suggestions did indeed lead to bad consequences, it merits double apologies. I do am a proud person but after reading my old posts, I do realize that my efforts to help were in fact misleading.

Wise thing to do: before giving an advise or information, make sure that it's based on something solid, with evidence to back it up. I'm not used to post on forums (especially serious ones) and I do need more experience, even if it's learned the hard way. My apologies to you Aurochs, Stacia and Dianthus.

Stacia
The suggestion of stopping a med was not to be done alone even if I left it unsaid (which I will not say the same way again!). Never is, never should be, unless under a physician's supervision, with his blessing and support, be it for therapeutic reasons or to shed some light on side effects causes.


Thank you for acknowledging that we weren't just being heartless jerks. Seriously.

We all learn. You are welcome here, just keep it real.

Edited by Stacia, 12 March 2011 - 12:53 AM.

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#15 Fantome D

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Posted 14 March 2011 - 07:55 AM


Ok people. Point granted. I see alot of nonsense being said on these forums and some uncanny suggestions, so when I post, I try to be of help and base it on facts. In this case, my apologies to JustAnotherNut. And if my conclusions and suggestions did indeed lead to bad consequences, it merits double apologies. I do am a proud person but after reading my old posts, I do realize that my efforts to help were in fact misleading.

Wise thing to do: before giving an advise or information, make sure that it's based on something solid, with evidence to back it up. I'm not used to post on forums (especially serious ones) and I do need more experience, even if it's learned the hard way. My apologies to you Aurochs, Stacia and Dianthus.

Stacia
The suggestion of stopping a med was not to be done alone even if I left it unsaid (which I will not say the same way again!). Never is, never should be, unless under a physician's supervision, with his blessing and support, be it for therapeutic reasons or to shed some light on side effects causes.


Thank you for acknowledging that we weren't just being heartless jerks. Seriously.

We all learn. You are welcome here, just keep it real.



Thank you for your reply Stacia, I really appreciate it!
Fantome D
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Life is what you can get out of it. Do your best, work hard, be honest and wise, and the rewards, whatever they may be, will be plenty.

Laugh whenever you can, cry if it hurts, focus on what is important... always make sure that you stay yourself.

Rx : Wellbutrin XL 450 mg, Mirapex 0.5 mg, Trazodone 100 mg

#16 null0trooper

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Posted 14 March 2011 - 10:55 PM

The suggestion of stopping a med was not to be done alone even if I left it unsaid (which I will not say the same way again!). Never is, never should be, unless under a physician's supervision, with his blessing and support, be it for therapeutic reasons or to shed some light on side effects causes.


We harp on this repeatedly because it's so very easy for someone who's in very bad shape and still new to the whole med-go-round to get the wrong idea on his or her first visit to the site. We also do so because it can be far harder than one would expect to stay on their meds ... or to realize it's time to call the doctor's office ASAP.

FWIW, be careful with side effects lists when the source skips over the frequency at which the side effects were observed in clinical trails. Many online pages will cut and paste symptoms across a class of drugs without checking the original refs, and then others lift content from them. Then again, the PI sheets from the manufacturer might not mention that some of the side effects may be specific to certain MI populations. For example, bupropion can cause somnolence in some people instead of insomnia - because some folks with ADHD react that way to strong adrenergics (which can also do freaky things with a guy's wedding tackle ... and since JustAnotherNut isn't on one of those meds, he really needs to see his GP and maybe a specialist very soon)

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#17 JustAnotherNut

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Posted 15 March 2011 - 01:15 PM


The suggestion of stopping a med was not to be done alone even if I left it unsaid (which I will not say the same way again!). Never is, never should be, unless under a physician's supervision, with his blessing and support, be it for therapeutic reasons or to shed some light on side effects causes.


We harp on this repeatedly because it's so very easy for someone who's in very bad shape and still new to the whole med-go-round to get the wrong idea on his or her first visit to the site. We also do so because it can be far harder than one would expect to stay on their meds ... or to realize it's time to call the doctor's office ASAP.

FWIW, be careful with side effects lists when the source skips over the frequency at which the side effects were observed in clinical trails. Many online pages will cut and paste symptoms across a class of drugs without checking the original refs, and then others lift content from them. Then again, the PI sheets from the manufacturer might not mention that some of the side effects may be specific to certain MI populations. For example, bupropion can cause somnolence in some people instead of insomnia - because some folks with ADHD react that way to strong adrenergics (which can also do freaky things with a guy's wedding tackle ... and since JustAnotherNut isn't on one of those meds, he really needs to see his GP and maybe a specialist very soon)


It seems my post has sparked a bit of a debate on how to answer questions on the forum. Not my intention, but really educational as I now know, or at least have a fairly good idea on how to answer questions if I feel I can help others. I agree that it is important to not get people confused, and maybe even scare them to cut down on their meds, or even stop taking them entirely without seeing a specialist. Side effects may suck, but still...

I've already seen my neurologist about some of the more common side effects, and she advised me to get supplements for hair, go to bed at the same time every night to try getting a steady sleep cycle, and maybe exercise a bit more for both weight and fatigue. It really sounds like sound advise. She wasn't sure about the stranger side effects, but was going to ask colleagues if they had heard about it. We also came to the conclusion that we'll leave the meds alone for now, as they keep my seizures, GTC, completely at bay. (Seizure free for over a year now :D) If the sudden need for sleep/sleep paralysis gets any worse we'll cross that bridge when we come to it. I will also see my GP in a couple of weeks (I figure I'll survive the potentially other side effects until then) and go through them again with him, and see if the increased libido/erections might be caused by something other than meds. Will also do blood work to see of everything else is OK.

I have stopped taking my meds once. I ran out while studying in Australia (I'm from Norway), and couldn't be bothered to go to a doctor to get a new prescription. Besides I had only had 2 seizures, five years earlier, when living a rather stressful life with a LOT of partying. So the idea that I didn't have epilepsy in the first place didn't seem too far fetched at the time. Well, long story short, a week or so later I found myself on the floor with wet PJ's and blood all over my face from chewing my tongue to something that resembled... well... not a tongue. I learned my lesson back then, and would never do it again. And, as a consequence, I'd never tell someone to do what I did :)

Take care :)
There is no gravity - the earth sucks! - Bret Easton Ellis : The Rules of Attraction

#18 booter26

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Posted 23 March 2011 - 08:05 PM

First off, the meds do work. Seizure free for over a year now, so the side effects might be worth it...

Now for the side effects. I have the usual ones: I've gained more than enough weight to sustain me for a short war. My fingers sometimes trembles to the point were using my iPhone to type anything is next to impossible. My hairline has slowly receded, and what's left is slowly turning grey. I'm having a hard time getting anything done. I'm tired as h**l, but can't fall asleep. My memory and attention span is shot to pieces! Oh, and last but not least, my skin looks at least five years older than a year ago :( And I'm not afraid to admit that i'm vain, and feel depressed by getting bold, grey, fat and shaky way to early in life ;)

Now for the stranger side effects: (I hope this isn't out of line!)

I keep waking up several times a night with more or less painful erections! More "more" than "less" actually. (I told you it was strange) That is if I fall asleep in the first place! Sometimes I find that I wake up giving the already awake member a bit too much attention. To make it crystal clear, I don't wake up and then start, I'm waken up by it. I'm not feeling turned on or anything when I wake up, so why this happens don't know. This all started after I got up to the therapeutic levels of the meds (300mg Lamictal and 1200mg Orfiril), so I think it might be related. It took me a while, and I felt rather embarrassed, to ask my neurologist about this, and she (which didn't make it less embarrassing) said she'd never heard of this before. After we talked about it for a bit, she reminded me that it could be worse since impotence can occur from the same meds. I guess that's true :)

The second thing is that I sometimes, for lack of a better word, simply crash. I'm on the coach watching tv or reading, and then the need to sleep is so overwhelming that I have no chance of staying awake. I usually wake up 20-30 minutes later, having a really hard time doing so. I keep on yawning like mad, for close to an hour afterwards. Sometimes I feel paralyzed as well, but not sure if I'm awake or not, so it might be a recurring dream. I know that the need for sleep might be related to the fact that I'm not getting enough sleep on a regular basis, but still... The need for sleep can happen at other times as well, but so far I haven't fallen asleep on the metro or a bus.

H.

PS! If anyone has any good tips regarding the more common side effects I would love to hear them. Especially regarding the hairloss, since that bothers me the most.


I can't speak to the painful erections; as a girl this is a side effect I'll never experience (though it did do bizarre stuff to my menses early on), but unfortunately, I can't say the same for the hairloss, and as a girl this bothers me A LOT. I didn't think to correlate it with my meds; I've always had fine hair and I just figured the inevitable was setting in. Lamictal works too well for me to discontinue if, but I'm not thrilled about being 29 and taking up a Rogaine habit to compensate. I get the yawns too- really unsatisfying half yawns. Insomnia has long since been a part of my life, so I don't know if Lamictal is to blame. I also sometimes get the feeling that I'm not getting enough air and my breathing isn't normal, which other people here have commented on. I also get the weird metallic taste in my mouth. I think this is one of those meds that some people breeze through with nothing, and others get a whole range of interesting side effects. Ultimately, the question is, do you think it's worth it?

#19 david@davidrussellrobbins.

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Posted 25 March 2011 - 04:44 PM

I would agree that stopping the meds without doctor evaluation is irresponsible. A seizure can occur lowering or raising a dose. Switching seizure meds needs doctor supervision and tapering off and on. God help us if an eilepti is unmedicated and driving 65 mph on the hwy!
My personal experience with Lamictal(Lamotrigine) is the nausea. I take 400mg/day (200mg AM and PM). I have constant nausea(worse at times). My diagnosis of Epilepsy came post craniotomy. I do have a sister, a nephew and a niece that have had it since birth. My sister has been on many of the seizure control drugs and nausea was one of her most common side effects. She told me to use Pepto Bismo, when nausea was at the greatest. Tends to be pre-mealtime. Starting that regime when I have this symptom the next few days. I have to admit, the Lamictal gives me better seizure control than other meds and may havemore manageable side effects. I don't experience any other serious side effects, but occasionally insomnia. Keppra made me suicidal. Dilantin and Trileptal made be cognitively impaired. My doc says the benefits may outweigh the side effects with Lamictal and he seems reluctant to change. He said a dose change would require reporting to the DMV and I would risk losing my license. I have had seizure symptoms when under great stress (recent divorce), but most I believe are plain nausea, which was a pre seizure trigger for me in the past. It's terrible to be so paranoid, but I have two young sons that I don't want to put in danger when I am driving.

No sexual limitations or excesses, as per prior post. I will never take a serotonin inhibitor, because of that. Losing my sexual satisfaction, when I already have lost my ability to drink any alcohol and ability to enjoy tasteful food would make me question what life was worth.

Anyway, fellow seizurers, that's some of my input and I look forward to hearing more of yours!

David


The suggestion of stopping a med was not to be done alone even if I left it unsaid (which I will not say the same way again!). Never is, never should be, unless under a physician's supervision, with his blessing and support, be it for therapeutic reasons or to shed some light on side effects causes.


We harp on this repeatedly because it's so very easy for someone who's in very bad shape and still new to the whole med-go-round to get the wrong idea on his or her first visit to the site. We also do so because it can be far harder than one would expect to stay on their meds ... or to realize it's time to call the doctor's office ASAP.

FWIW, be careful with side effects lists when the source skips over the frequency at which the side effects were observed in clinical trails. Many online pages will cut and paste symptoms across a class of drugs without checking the original refs, and then others lift content from them. Then again, the PI sheets from the manufacturer might not mention that some of the side effects may be specific to certain MI populations. For example, bupropion can cause somnolence in some people instead of insomnia - because some folks with ADHD react that way to strong adrenergics (which can also do freaky things with a guy's wedding tackle ... and since JustAnotherNut isn't on one of those meds, he really needs to see his GP and maybe a specialist very soon)



#20 deeschmee

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Posted 06 April 2011 - 09:58 AM

Ok I was just prescribed Lamictal for BP1 and after reading this I am thoroughly confused!!!

Is there any comparison or info on the percentage of side effect? How likely am I to suffer insomnia?

What are all of your personal experiences with Lamictal? As David and some others have.

You have two voices with which you speak: your
MindVoice and your SoulVoice


PTSD,Major Depression, anxiety and possible bordedrline

Back on Venlafexine 37.5 for now, Ambien 5mg as needed

 

 
Too many past meds to list Seroquel 25 mg,Cymbalta,  NOT Welbutrin Budeprion which explains a lot!!!!, Amtryptaline, Lamotrigine, Tripletal 150mg Topiramate 25mg, Lamictal (got the rash) Clonazepam .05mg Trazodone 25-50mg Venlafexine 37.5mg, Hydroxyzine HCL 25 mg Trileptal wigged me out!!! 

Past dx Bipolar 2 or 1 they really arent sure!!! I feel as though I have more borderline traits, but being adopted can mimic this illness






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