Been There, Done That…Psych Med, Lab Rat!


For those who like to keep score, here are all of the meds that I have been on. They’ve invariably caused me some sort of wacky/ugly side effect(s) and/or some have not even bothered to work at all. As always, I welcome any questions and if you don’t recognize a med here, just ask!

Also, there have been changes over time. I’ve added them to the list and noted them at the end of this Page because some of them occurred after I started this blog.

– Oxazepam/Serax
– Diazepam/Valium (just a few days but what the hey)
– Sertraline/Zoloft
– Lorazepam/Ativan
– Venlafaxine/Effexor
– Bupropion/Wellbutrin
– Clonazepam/Klonopin
– Zopiclone/Imovane
– Liothyronine Sodium/Cytomel (I know this looks funny on a head med list but it was used as an adjunct to Effexor)
– Mirtazapine/Remeron
– Moclobemide/Manerix
– Nefazodone/Serzone
– Temazepam/Restoril
– Fluoxetine/Prozac
– Carbamazepine/Tegretol
– Citalopram/Celexa
– Lamotrigine/Lamictal
– Divalproex Sodium/Depakote (eh, three days inpatient but again, why not?)
– Topiramate/Topamax
– Rizatriptan/Maxalt
– Olanzapine/Zyprexa
– Clobazam/Frisium
– Atomoxetine/Strattera
– Bentahistine/Serc (widely prescribed for Meniere’s Disese to combat vertigo; in my case nausea from migraines)
– Methylphenidate (Extended Release)/Concerta
– Biphentin (pharmacologically identical to the above but used for ease of dosage change)
– Quetiapine/Seroquel
– Esomeprazole/Nexium (Proton Pump Inhibitor for GERD; not a psych med obviously)
– Domperidone/Motilium (Gastrointestinal med for migraine nausea)
– Diazepam/Valium (again, but now permanent)
– Quetiapine/Seroquel (Extended Release)
– Valproic Acid/Depakene (basically the same as the Depakote above)

So, I guess that pretty much covers every class except the tricyclics, the “old school” or “typical” APs (Antipsychotics) and the stimulants.

Strattera was a disaster. It’s kind of my own “fault” as I completely forgot that it’s basically an antidepressant–an NRI (norepinephrine reuptake inhibitor.) I can not even be in the same room with an AD (Antidepressant!) Okay, it’s not that bad but they make me go positively nuts.

In 13 days, Strattera reduced me to a quivering, mumbling, Mixed State, Ultradian Cycling, pile of rubble. Hey, at least I gave the drug 13 days. And the physical side effects were hell too. A gastronomic disaster and waking up at the crack of dawn just for the fun of it, basically.

Yep, developed in Sweden as an AD with terrible (or simply null?) results and now it’s an ADD med! I wonder if it actually helps ADD folks. No, really. I’m not being snarky. I do wonder. I guess there is some anecdotal evidence out there but I’ve had a bit of a hard time finding any studies.

But please, don’t get me wrong. I would never discourage someone from trying a med based solely upon my experience! That would be silly. We are all neurochemically diverse and unique. Speaking of being “all neurochemically diverse and unique” I’m going to start adding my med changes as we go along from here. It would be too much for the list above. Because I’m way too “neurochemically complicated.”

Edit: April 2007 have now started taking Lamotrigine/Lamictal (again) and Quetiapine/Seroquel

Edit: August 2007 have now started taking Methylphenidate/Concerta/Extended Release Ritalin

Edit: August 2007 have dropped the Zopiclone/Imovane as the Quetiapine/Seroquel is enough and tossing in a Hypnotic along with the Atypical AP seemed a bit overkill and unnecessary

Alright, so we need a bit of an update as per dosage. Topiramate/Topamax 200mg, Lamotrigine/Lamictal 150mg, Quetiapine/Seroquel 50mg, Methylphenidate/Concerta 36mg, Clobazam/Frisium (benzodiazepine used only as a seizure adjunct) 10mg, Rizatriptan/Maxalt (migraine med) prn

Gastrointestinal: Esomeprazole/Nexium (Proton Pump Inhibitor for GERD) 40mg, Palafer (Iron Supplement for Anaemia) 300mg

Edit: Have now gone off Palafer as I couldn’t stand it. My gastro loves me so he let me when I told him I refused to ingest one more little pill! We’re going to monitor for any future anaemia issues, I believe?

Edit: As of late December 2007, I have started taking 40mg of Biphentin which is exactly the same as Concerta, listed above. So far, it is only available in Canada. The reason for the switch was a more flexible titration schedule, basically

Edit: In February 2008, Domperidone/Motilium was added to my arsenal. It is a gastrointestinal med that can be used for assisting digestion but also for nausea. I will be taking it for the latter if/when I have migraines during the day while at work. There is no way I could take Gravol/Dimenhydrinate or I’d be passed out under my desk!

Edit: In April 2008, Seroquel increased to 100mg, Topamax increased to 300mg and Valium added at 5mg one to two tablets daily prn

Edit: In September 2008, Clobazam increased to 20mg and Lamictal increased to 200mg (for seizure management.)

Edit: In March 2009, someone asked me about my cocktail and I realized this was out of date. Let’s see if I can even remember everything: Topamax 300mg, Lamictal 200mg, Clobazam 20mg, Seroquel 150mg, Biphentin 40mg, Nexium 40mg, Maxalt (10-20mg prn) Valium (5-10mg prn.) The Domperidone doesn’t work at all–goodbye. Whew! I think I managed to capture them all!

Edit: In July 2009, changed from 150mg of Seroquel Immediate Release to 300mg of Seroquel XR (Extended Release.) This was because I had a bit of a “Brain Go Boom.” Also, in June 2009, went back to 36mg of Concerta due to stoopid guvmunt not covering Biphentin in their drug plan.

Edit: Had to immediately switch back to the regular routine of 150mg of Seroquel and drop the 300mg of the Seroquel XR after less than two weeks of taking it. My brain did not get along with it at all. That is a gross understatement.

Edit: In July 2010, had another “Brain Go Boom.” Lamictal increased to 250mg and Seroquel increased to 200mg. The Anticonvulsant is really the most important, as the “Brain Go Boom” was a really bad “Boom!” Well, aren’t they all? Not sure why the Seroquel was increased as it doesn’t carry over into the day to relieve anxiety. I only take it for sleep. Fine, I’ll do it.

Edit: Ah, minor change to the above, but increased Lamictal to 300mg in August 2010. I didn’t think the 250mg was quite doing the job, so I wanted a bit more “oomph.” Yes, that is a proper medical term.

Edit: In December 2010, 500mg of Depakene/Valproic Acid was added. Its intention? To try and eradicate the extreme ugliness, also referred to as: “Typical Absence Status Epilepticus.” It leaves me so disgustingly ill, I am housebound for the six days of each episode, that occur bi-monthly. It’s fun.

Edit: January 2011. Dropped the Depakene after two weeks! The world is a much safer place with me not taking that drug!

Edit: February 2011. After dropping the Depakene for the Typical Absence Status Epilepticus, the second choice was pursued. That was to increase my Clobazam/Frisium. Currently at 60mg and we seem to be on the right track. This med is actually used for Catamenial seizures/epilepsy. We just weren’t sure if it was enough to deal with such an extreme case.

Edit: October 2011. Increased Clobazam/Frisium to 80mg after I lost it. The drug suppliers couldn’t get it to any pharmacies. I had to quit it cold turkey with unbelievable results. I am writing this in December 2011 and am still sick. The 80mg is not working.

Edit: February 2012. Increased Clobazam/Frisium to 100mg from 80mg for the Typical Absence Status Epilepticus. The 80mg made the seizures go away, but only during the times when the TASE wasn’t occurring.

Edit: April 2012. Back on Biphentin for my ADD. It’s exactly the same as Concerta (extended release methylphenidate) but at my dose of 36mg of Concerta years ago, I needed more. Concerta is stupid as it stops an even titration at 36mg. Biphentin has even titrations of 10mg. It also has a different delivery system. Thus, I did better on 40mg of Biphentin.

Why did I have to stop my Biphentin? When I was laid off from my job and had to go on the government’s drug plan, it wasn’t covered. Even though it was the same as Concerta. Now, they’ve gotten their head’s out of their asses for at least this one, tiny thing.

Edit: End of June 2012. Extremely high dosages of my Topamax and Lamictal for me to play with. This was done so I could work on titrations of these meds I already take. The goal was to blast all the problems I was still having with the Typical Absence Status Epilepticus Status. Well, no seizures since the beginning of August 2012 (and still counting!) Mood problems still an issue.

EDIT: Ah! I just realized time for some med updates. A long time since the above. I’m still seizure free, it’s October 2015, and my moods are fine.

So what I’m taking at this point:

Morning – 200mg Topamax, 150mg Lamictal, 40mg Clobazam, 40mg Biphentin, 15mg Prevacid (for GERD.)

Divided Dose/Late Afternoon – 300mg Topamax, 150mg Lamictal (had been 200mg but 50mg was nuked.)

Night – 200mg Topamax, 150mg Lamictal, 40mg Clobazam, 200mg Seroquel, 15mg Prevacid.

Another long time for a med update! They’re all around the same time though.  More or less.

March 2016 – Diagnosed with Continual Migraines.  Started Propranolol 80mg.  I chose 40mg morning and 40mg at my regular Divided Dose.  No success.

Immediately after starting Propranolol because I was still whacko on its side effects – re-add 50mg of Lamictal for Menopausal Depression.  Partial Success.

September 2016 – Increase of Biphentin from 40mg to 50mg. THANK GOD! I’VE BEEN BEGGING FOR YEARS! New Psychiatrist! Told him Stims can also act as ADs in some people.  I’m not as depressed with this Menopause crap.

September 2016 – New Diagnosis: Chronic Migraine With Visual Aura.  An aura can involve any of your senses, but visual is the most common by far.  It was for me.  I went completely blind in my right eye.  I’m not making a joke, but it was quite something to experience what it feels like to be someone with no vision at all.  My vision fully restored on its own in perhaps 15 minutes or a bit more.

September 2016 – That’s a long paragraph, so now on Gabapentin.  100mg increased weekly in same increments until 300mg.

22 Comments

  1. Canageek

    October 13, 2009 at 23:13

    Hey, we use (or used) the same dose of Concerta! Do you have any info on Biphentin? How is it working out? I used to be on Ritalin and found Concerta had way less side effects and lasted longer/worked better to boot, but I’m open to learning about new things.

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  2. patientanonymous

    October 14, 2009 at 10:54

    Hi Canageek. You’re the first person to comment on this Page!

    Yes, I have lots of information on Biphentin. It is the exact same as Concerta (that is Extended Release Ritalin/Methylphenidate.) They are identical pharmacologically. However, there are some slight differences.

    Biphentin comes in a capsule form with little balls in it. Concerta is an almost cylindrical pill as you know, having been on it. Inside that, is a sort of chalky substance? Thus, that makes for (again) a slight difference in how they are metabolized. Granted, not much.

    Also, the dosage levels are different. Biphentin doses are equally distributed by 10mg. Concerta is not, and for some reason, that makes no sense to me. It stops its equal dosage levels at 36mg. It starts at 18mg and progresses from there in 9mg increments up to 36mg. Then it doubles right up to 54mg! Again, this makes no sense to me.

    The reason I switched to Biphentin, is because I wasn’t quite getting the best results, I thought, at 36mg of Concerta. Merlin #2 was hesitant to bumping me all the way up to 54mg and that I could well understand! So, we went with 40mg of Biphentin that would just give me an extra little “push.”

    Now, I have gone back to Concerta as I am not working and the stoopid guvmunt drug plan I am on will not cover Biphentin. It covers all other ADD meds but not Biphentin! I know. Another thing that makes no sense to me.

    So…yes, Concerta probably worked better/longer for you because it is Extended Release Ritalin. That would be my guess, but everyone is different, our brains are different etc… That is also where the side effects of the non-ER Ritalin may have caused you issue, as well.

    I have only been on the non-ER Ritalin once for a few days while in hospital. I couldn’t tell much of a difference as it was just a few days, but I suspect the ER form would work better for me.

    Any other med questions, just let me know!

    Oh, you asked how is it working out? OMG! My Stims have been an absolute blessing! They really help me so much. I can finally read (at least a bit better) as I had just lost all ability. I love books, so that was a total heart breaker.

    I have no side effects from them, either! Awesome.

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  3. Jon

    October 16, 2009 at 00:08

    i’m sooo surprised that there hasn’t been many other replies to this!! i typed in “lamictal lab rat” and you where the first one that came up. i was surprised to see how many psych meds doctors will prescribe to a patient…it’s really shocking.

    here’s the situation right here. i feel like lamictal is F’ing me up, but that’s not my primary issue. as all of us know, our mental problems are genetic. i’m biploar, as is my mom and my son is showing early signs of it. presently, i’m on lamictal (200mg) and i’m having doubts about it. but like i said, it’s not even about Me. my son’s mother’s psych(iatrist, ologist?) suggested some Strattera and it bugged me out b/c i don’t like the idea of putting my SIX year old on Any type of medication, especially given the mental history of my and his mothers’. I just don’t know what to do about me Or him. It’s really abstract, I realize, but, do you have any insight At All to this??

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  4. patientanonymous

    October 16, 2009 at 13:23

    Hi Jon. So nice to meet you and welcome to my blog. I do have to laugh a little bit at the Search Term, and how you arrived at this Page and found me: “lamictal lab rat”! Sorry, I just love that.

    However, not to take away from the serious tenor of your comment here. I do want to talk about you, as well as your son. I have no problem with that, also.

    I’m not sure how much you know about Lamictal but it’s a pretty complicated Anticonvulsant. Well, all meds are and we are all different (my typical speech…) but Lamictal has to have its slow titration due to everyone getting up in arms about “The Rash” and SJS (Stevens-Johnson Syndrome), that yes, can be fatal but is rare.

    If the Lamictal is causing you some problems, let me know what they are in greater detail and maybe I can help? I’m not a M.D. as I always say (and this goes for your son as well), but I am always very happy to offer my thoughts.

    I agree with you also, so much, about genetics even though we don’t have any concrete proof…yet!

    I have some strong feelings re: children and psych meds as well. It’s a real issue! Health reasons as children’s brains have not fully developed yet, ethical reasons for how can anyone know results or efficacy? Ethical, meaning conducting research and studies! How many parents do you think would volunteer up their children for drug studies? Well, some do–see below.

    Personally… In my personal opinion, you are the primary caregiver, so it is ultimately up to you to make the decision. I would say the same to any other parent–or primary caregiver. You are responsible for this child.

    I am not a parent. I have no children. Again, this is only my personal perspective. If I did, then I would not want to put my child on any psych meds unless:

    a) A very good diagnostician had seen them, and a firm and excellent workup had been done (or maybe more than one diagnostician etc…)

    b) Based upon the above, a diagnosis was made clear.

    c) It was illustrated (either with or without the above), that the child would benefit, or really needed the medication to aid them. As in, whatever is/was going on was impairing their functioning.

    That last point, I believe, is very important. This is why. Although we seem to be talking about Bipolar here, which is a Mental Illness, it shares a lot of traits with AD(H)D–which is a Developmental Disorder. The distinction is that you are born with a Developmental Disorder–it is not genetically laying dormant to be “triggered” like Bipolar often is. I have both.

    Anyway, far too many times, parents will be far too quick to put their children on meds to make their lives easier. It is NOT about the parents’ lives–it is about the children’s lives!

    As far as the med Strattera, as mentioned above, it’s kind of an odd one. It is used for AD(H)D, but pharmacologically it is basically an Antidepressant. I have found a study done where the lowest child’s age within it, was actually six years old.

    As far as the “maintenance” part of the study, which would mean that your child would take it long term, it really didn’t tell me too much. Basically, “statistically” in the double-blind tests, those not on placebo did better. The age group was also between six and 15 years old.

    Bear in mind, this is used as an AD(H)D med. If there is any suspected Bipolar diagnosis going on (and that has not even been confirmed?) Strattera may end up being prescribed “off label.” I see where you are from (don’t be scared, I am only saying this to try and help), so I do not know how physicians work where you are. I don’t know how amenable they are to working with off label procedures. And just to reassure you, I am in Canada–it’s on my about page so there’s a bit of quid-pro-quo re: locales!

    So, I know this is getting a bit long here but I do feel this is very serious. It sounds to me like you’re not even sure yet what is exactly going on with your son, and putting the cart before the horse. Perhaps if you think there really is something going on, you might want to consider my “Option a)” up there, and then move forward.

    If it were me (again, just me talking), I wouldn’t start tossing pills into my child unless it was absolutely necessary and certainly for the right reasons.

    Please come back to my blog with any other questions, or email me if you want to talk about anything else.

    Take care,
    PA

    Oh, yes! As far as my list? Well, it is pretty “impressive,” isn’t it? In part, it is long because I was originally mis-diagnosed in the first place, regarding the Bipolar. I also have my other comorbidities? ADD, Epilepsy, Migraines? I am a chronic insomniac too! For the Asperger’s and the PTSD, no meds for that! I have a very complicated brain!

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  5. Asdquefty

    December 27, 2009 at 07:02

    I think it might be interesting to arrange the meds in a timeline, rather then a heap. This page has become something of a convulsion! It’s a lot of stuff but done over time.

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  6. patientanonymous

    December 27, 2009 at 12:39

    Hi Asdquefty. Thanks, for the suggestion. The meds are listed in “roughly” the sequential order that I was prescribed them. I say “roughly” because there were times when I discontinued a med and then restarted it. I just didn’t mention a vague sort of ordered timeline here.

    With my my psych hx. going back for so long, my records weren’t that accurate in terms such a timeline. I did/do have some information for certain yearly periods that were/are (sort of) accurate. I could look at my files for those. That may prove somewhat helpful.

    You know me though; I’m kind of persnickety for accuracy?

    Let me see what I can do, okay? I’ll make an exception just for you… *sticks tongue out*

    Just kidding everyone. I’d do the same for anyone else!

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  7. licoriceroot

    May 26, 2010 at 16:08

    Hey PA –
    I’m digging into your blog pretty heavily. I have a bipolar child and teach aspie kids. Me? Anxiety proned, medical basket case.
    I do have a question that needs attention asap if possible. I finally found what I was looking for. You were – are? on Seroquel. I read – hopefully correctly – that you tried Serquel XR and it did not agree with you, whereas “regular” seroquel did?
    Could you please expand on this a bit more. My Liza’s psychiatrist had her on Seroquel, then tried to go for Seroquel XR…The idea was to replace the Abilify with Seroquel XR. It was bizarre. She does fine on Seroquel, but the XR? First she couldn’t sleep, then by the next morning, she could barely stand. He wants me to try the XR again, but I played Mom dr and raised her dose of regular seroquel and am weaning her off abilify. She’s doing great. What’s up with the XR? What did it do for/to you?

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  8. patientanonymous

    May 26, 2010 at 21:20

    Hi licoriceroot. Okay, let’s see what we can do, here. And remember, in another comment to you I said I was kinda…not so here…? Moving slowly? Nonetheless, I’m a med geek and that will never change. Today, I’m just a really, messed up med geek! *shakes head and rolls eyes*

    I’m not sure how much I’ll be able to help, but I will tell you what I know, and certainly tell you about my experiences. The reasons that I may not be able to help so much, you may have already figured out or know. All of our diagnoses are different, all of our brains are different, and thus, who knows how we’ll react to these meds. Also, no one really knows how these meds work.

    Not to mention, we have an entirely different (and very important!) variable here. Your daughter and her age! Wow. I just about fell over when I read how young she was. Kids and meds…

    Don’t get me wrong. I’m not opposed. It’s just more of an uncharted, territory issue. Plus, when really young, their brains are entirely unlike a fully developed adult brain. So, that could mean a world of difference.

    I had to dig back as my experience was almost a year ago. I also didn’t write that much about it, as I was going through a lot of personal ugliness.

    You may have already read about my side effects but initially: loopy and out of it, totally cognitively impaired, dry mouth, klutzy, dizzy. I think that’s about it. It knocked me out the same sleep-wise, and for some reason, it made me hungry. The “non-XR,” or I’ll just call it “Seroquel,” never did.

    These were all typical side effects listed, so I figured it was only fair for a med swap. Hey, even if I do a titration of a med I’m on, I’m still going to feel some of the known side effects. Although, theoretically, it should only be for a brief period, as I’m already on the med, right? I’ve already achieved a steady state. This would definitely make sense for a titration, unless the newly prescribed dosage was too high. Then, you might have to back off a bit.

    For a swap? For something like an IR (Immediate Release) to an XR? Could that be a bit different than a titration? I think so. Reason being, if your brain is used to a specific method of delivery, and that has now changed, your brain might become a bit rebellious. However, again…it’s still the same med that you were on. Hmmm…tricky.

    After a bit of time, things definitely got a bit “weird” for me. Gross understatement. It was like the med started to work in “reverse.” Completely backward!

    I was still taking my 150mg for sleep at night (which was my same dose of the Seroquel for sleep.) It was just that an extra 150mg of the XR was added during the daytime. It made sense when prescribed. 150mg of it for sleep, and 150mg of it to keep me chilled out during the day.

    Well, holy shit! I began to feel a fair amount of anxiety to start. Huh. That was kind of weird. Granted, I was under a lot of stress. Even still, something didn’t feel right about it. The med was supposed to help control that, not increase it, or much less create it!

    Then it started taking me longer and longer to get to sleep. I would be up for hours. Definitely not right. The Seroquel would have taken, at worst, two hours to kick in. I got to the point of actually taking the meds at dinner to see if that was long enough. Nope.

    I’m not entirely sure, but my moods may have started to get worse. I know my sleep sure did as I just couldn’t get any! Well, some but it sure was difficult to achieve. I know I was extremely pissed off at the whole scenario, so I suspect it was really messing with my entire state of mind.

    Why? Well, you’ve made me go back and look at things, and I owe you a big thanks, really. I found something that I missed before. That’s probably because it made me go so, altogether wingy! Get ready for a bit of pharmacology. And my standard caveat: “Dr. PA is NOT a real doctor!” Also, I’ll toss one more at you as well. This will probably only make sense (as far as neurochemistry ever can?) for my own brain.

    I am someone with Bipolar who cannot take Antidepressants. They make me cycle like crazy. Some others with Bipolar are just fine on them. What I missed? It may appear to be a small detail, just a few little letters, but it’s about how both the Seroquel and the Seroquel XR act, regarding their antagonistic effects with serotonin and their receptors.

    It’s a bit confusing, but to keep it brief, the 5-HT receptors bind to serotonin. The Seroquel XR acts as a greater antagonist to 5-HT2A receptor. This is probably why I went so out of my mind. Even though Seroquel acts the same way regarding other receptors within that group (the 5-HT family) it is with much less affinity–and certainly much less regarding 5-HT2A!

    Guess what are some other things that have a high, antagonistic affinity for 5-HT2A? You’ve got it! Bingo! Antidepressants! Now, of course I can’t say that this was the issue for me with 100% certainty. But now that I look at it from this angle? Well, it does seem to make some sense.

    So, I don’t know if this has been of any help at all. Maybe? I think it ended up being more help to me! *laughing* Regardless, please come back if you have any more questions, or please feel free to email me.

    Take care again,
    PA

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  9. licoriceroot

    May 26, 2010 at 23:06

    Thank you so much for the in depth response about the Seroquel. I have been looking everywhere for some sort of research comparing the two. So far, all I have found is anecdotal evidence. There are others out there on the web who have posted here and there that they had problems when they went to the XR.
    I began to wonder about the fact that on every drug website, one of the last uses mentioned for Seroquel is depression – the first two are always schizophrenia and bipolar 1 mania, but right down there on the tail end is depression.
    Liza had the exact same sleep issue on it. She couldn’t go to sleep. And the next day, I found her asleep on the living room floor as we were leaving for work/school. It was bizarre – she would get up and yell ugly things, then fall back asleep. i called her doctor. We stayed home and suffered through it togeteher until it wore off.
    My other theory is along the lines of what you said. No one can predict how the drug will work in each individual, but it may be that since the release time is different, it throws the body for a loop. I found a whole site with postings about the two drugs, and 3 of the 5 who had tried to switch said it took forever to get to sleep on it, and the next day was hell.
    Yes, Liza is young, but she started early. With the kindling effect, it was best to treat. She is extremely bright, but has a strong family history of bipolar disorder. It seems to alternate in generations – my dh is BP II, MIL is BP I, her father was probably BP II. My dh’s symptoms began early, but Liza’s started earlier and more severe. In October of last year, she was hospitalized for hallucinations brought on by a manic phase. We always knew something was different – we had even taken her to a psychologist at the age of three after she threw a large dining room chair several feet during what we now know was a rage. It wasn’t until this year – first grade, when the noise, the pressure at school to perform – all of it was just too much. She went over the edge around September into homicidal actions and suicidal ideation, self harming behaviors…She tried to knock her own teeth out several times. She would bite herself, you name it. And she just kept saying “my head doesn’t feel normal”….It was bad. Then, one night, she had been manic in a moajor way all afternoon, she started having hallucinations. The next day, she was hospitalized.
    The hope in catching it in young children is that, hopefully, they will have more time to learn coping strategies prior to adulthood, get used to the fact that meds are necessary, and by the time they reach adulthood, it may be less severe since it was addressed early on. That’s the hope, anyway.
    Thanks for posting so soon. I look forward to reading more of your blog. Keep up the good work PA – you are helping others by sharing your story!

    :) Celia

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  10. patientanonymous

    May 27, 2010 at 18:39

    Hi licoriceroot. I’m so glad this information was of some assistance to you. I really am.

    I suspect that reason that you are seeing “Seroquel” not used for Depression so much, is because the Atypicals weren’t “designed” to actually treat Depression. I’m going to head back into some neurochemistry, but I’ll also toss in Big Pharma. I won’t leave them out of the picture as they surely benefited to some degree. Progress may equal profit?

    As far as the neurochemistry aspect, the general consensus is that for Depression, SSRIs work best as the newer drugs. There were the older the ones, the Tricyclics etc… but as things advanced, it was still thought that serotonin was the biggest issue. Therefore, block the receptors and try and make more available in your bean.

    Then, norepinephrine also entered the picture, so you ended up with SNRI’s. With those, try and block the norepinephrine receptors, just like serotonin, as well. It has been debatable about how much those meds have done in the same manner with dopamine. This is where I am eventually going. In my opinion, SNRI’s don’t do too much as far as dopamine.

    I’ll skip over the MAOIs as they’re just different, completely. Another shot, but they don’t really fit into what we are talking about.

    The Antipsychotic model? They do work more with dopamine and norepinephrine. And sure, as I mentioned above, serotonin, but far much less. Now how that fits into the neurochemistry, is that Schizophrenia is thought to be primarily about dopamine, and perhaps a bit about norepinephrine. So, the first line treatment for that would be the Antipsychotics.

    Bipolar is a different animal. It’s first line of treatment should be either Lithium or Anticonvulsants. Also, a pet peeve of mine is when people call Anticonvulsants “Mood Stabilizers.” They are not. Only Lithium is a Mood Stabilizer.

    Anticonvulsants work totally differently as well. Again, at least as far as we can conceive. If you think about it, they began as meds to treat epilepsy, correct? Something kind of curious to think about there. Regardless, they are, and should be, the first meds used to treat Bipolar.

    So, back to the Antipsychotics? Well, it’s not that they won’t “work” for Depression. It’s just that they may not work so well. They’re efficacy may be a bit up in the air. Like a lot of other meds regarding doctors and other ridiculous, almost bureaucratic things, some meds are used “off label.” That basically translates as: not first line treatment, or even not specific treatment at all. When in this situation, you may be up against a doctor’s discretion.

    I still think the Antipsychotics have value for Depression. In fact, I think both the Atypical (newer generation) and the older generation ones, as well. It’s interesting. The newer ones were developed to potentially have less side effects and greater potential than the older ones. In fact, it really isn’t so. The older generation Antipsychotics may be used with people, dependent upon circumstance, with still excellent result.

    Yes, I am familiar with the kindling theory. I have often wondered about that myself with my epilepsy, and subsequently my Bipolar. That is how the notion of it carried over to Bipolar–from epilepsy and the neuronal activity, potentiation and seizure activity. It is very much a mystery, isn’t it?

    I am also well aware of the genetic aspect. My mother is quite mentally ill. I would say definitely Bipolar and other things that I question. Quite strongly. Also, I can try and look beyond. Try to see other things. Unfortunately, I do not know my biological father, but I suspect there is nothing hereditary, there.

    It sounds like Liza has a lot going on. And so do you! I always say that with children it is so difficult. However, your situation sounds like the issues that are happening need to be addressed immediately. There is not a lot of time to waste under these circumstances. Liza seems at risk, so I trust you need to make these decisions for her. And even better, you do care, or you sound like you do! That is paramount.

    Let’s keep track of her, okay? How does that sound?

    Thanks again,
    PA

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  11. celia

    May 28, 2010 at 00:53

    Oh you mentioned Lithium. It still makes me sad. She was on Lithium and her life seemed to totally turn around….She was a different child. Prior to taking Lithium, we thought she could not read very well. After 1 month on Lithium, she tested 3 years above her age in reading. It was like the bipolar was clouding up her mind, then it became clear. She was happy, rarely manic, the crying jags almost stopped. She was able to sleep without alternate medication. Then the lab work came back. Her thyroid was being adversely affected. Synthroid was an option, but not one her doctor was comfortable with due to her age.
    She had to stop taking it. Her grades plummeted. Her moods went wild again. She started saying, “Mommy, my head doesn’t feel normal” like she did before. The replacement of Neurontin has been useless. At least she hasn’t tried to hurt herself or had any hallucinations.
    Psychiatrists who work with kids seem to use the term “mood stabilizer” so loosely now.
    You are right – there are major ethical issues with treating kids, and most of the drugs are used off label. For us, Liza’s mental and physical well being was seriously in jeopardy before we opted to treat. She was originally misdxd with anxiety. Ha! We found a competent psychiatrist, and took him a video diary. I recommend to all parents who suspect bipolar disorder to video over a period of time, and keep mood charts for several weeks prior to the initial eval. Sigh. Her next apt is next week. Her pdoc sees her every 2 weeks. Weekly if she’s really unstable, plus he is always on call for her.
    Anyway, back to the drawing board. I need to come up with my ideas on the next drug to try for mood stabilization since we’ll be tossing Neurontin for sure, but I may procrastinate by reading more of your blog.:)

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  12. patientanonymous

    May 28, 2010 at 19:00

    Hi celia. That’s really too bad about the Lithium. It can be such a disappointment when a med starts to look good and then…for whatever reason, side effects, poop out. Done.

    Neurontin is pretty much useless overall, I feel. My Anticonvulsants do triple duty: Bipolar, epilepsy and migraine prophylaxis. Granted, I wonder exactly how much about the latter. I pondered checking out Neurontin, but it was way down the list. Even in discussing it with my doctor, it was a bust before a script pad was even brought out. I was right and I knew it.

    More to the point, I was just desperate at the time. My ex-GP (who I fondly refer to as Dr. Asshole on this blog) was still treating me with Antidepressants so my brain was obviously not on the planet.

    Still, I should always say again, we’re all different and all of that. Neurontin could work well for some.

    You sound like you have found a real gem of a Psychiatrist for Liza. Good for you (and her!) That is also an excellent idea for a child. Video. Of course mood charting is nothing new (and certainly for adults) but for a child who can not articulate their own moods that way…video. Perfect!

    You are funny. May procrastinate by reading more of my blog. *rolls eyes and smirks*

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  13. licoriceroot

    May 29, 2010 at 00:31

    Well, that pretty much cinches the noose for the Neurontin. She was smothering me tonight and went into a major rage – things that NEVER would have happened on the Lithium.
    Afterwords, of course, she cried a lot. It was a mess. Her pdoc was on the edge of ditching the neurontin last time, so we can consider it ditched as of Wednesday. Time to titrate up on another one. Sigh.

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  14. patientanonymous

    May 29, 2010 at 15:24

    Hi licoriceroot. Yeah. That sounds like way too many attempts with the Neurontin?

    One thing I know that is pretty much anecdotal from the Asperger’s/Spectrum area, is that Risperdal/Risperidone can work for rage issues. I don’t know if you’ve considered that as the Seroquel seems to be working well–although, maybe not so much for the rage problems.

    I don’t have rage issues (although I probably should!) I bottle everything up inside! *rolls eyes*

    What other Anticonvulsants have you tried? I love my Topamax/Topiramate, but it’s a Temporal lobe drug. As such, hit or miss–or requires an adjunct. I’m a neurological freak of nature (beyond all of my diagnoses) as it was pretty, damn bizarre that I took Topamax as monotherapy for years and quite stable.

    So, we can keep this dialogue going, I guess?

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  15. destroythequeen

    August 7, 2011 at 05:45

    Sorry to seem like I’m just stalking your pages, but I HAD to comment when I read that you switched from Seroquel to Seroquel XR, and then back again. I did the same last year (took Seroquel for GAD) and as it is not on the PBS here unless you are diagnosed as schizophrenic and therefore require massive doses so went to S XR. I think I lasted a week. It gave me horrific nightmares, the very thing the other used to stop! I then refused to take it so I had to switch to Neulactil. That lasted a bit longer until I stopped it cold turkey.

    Anyway, my point is, I am SO glad someone else had a horrible time on S XR!!

    Like

  16. patientanonymous

    August 9, 2011 at 13:53

    Hi again destroythequeen. No, I’m erm…still working on that complement stuff, but I’m very pleased you’re reading and commenting.

    I actually find it helpful at times because when I hear from readers, they can try and help me reinforce the fact that I’m wrong. My blog is not crap.

    ASIDE: See About Page re: my sense of humour.

    I am always happy to find new readers, and have “lurkers” come out and comment for the first time. That’s awesome. “Lurkers.” I don’t like that term.

    I know, meds can cause some really awful side effects for some of us. I can’t be on an entire class of them! Antidepressants make me go nuts as far as being Bipolar. Some with Bipolar can take them, some can’t.

    I tried to demonstrate how that may have been the case with the really med-geeky (that’s me!) comment up there. Theoretical, but you never know?

    So take care, feel free to read at your own peril, and comment at will!

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  17. destroythequeen

    August 12, 2011 at 00:44

    Haha I have similar ideas, re: blog and therefore my inner mind is a pile of crap.

    But anyway! I wanted to ask, if you have a post about it or some time you could share a bit about it, I was wanting to know a bit more about your Bipolar diagnosis. When were you diagnosed and how did they determine it?

    If you’d like to discuss it more privately (I do understand) then I can shoot an email or something.
    But only if you have time/are comfortable!

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  18. patientanonymous

    August 17, 2011 at 13:36

    Hi destroythequeen. So often (nearly all the time?) we are our own worst critics. I don’t think that statement should be solely owned by “artists.” Aren’t we all artists in our own ways?

    Fuck me. How does that sound up there? I mean, that last sentence. HA! I think it sounds so many adjectives, I just have to leave it! However, I still believe that we are our own worst critics.

    Oh, I would be more than happy to share anything about my Bipolar diagnosis and circumstances, living with it, whatever. I just fear that it would be so many posts! Not that I’m super-special, but sort of a long story.

    I have written a lot about it within my Bipolar Category, but you would want to start banging your head against the wall after looking for your answers. The category is pretty large and this blog is a few years old now.

    Maybe email is the better route. Do you have any specific questions? We can start off there if you do. If not, just email me and I’ll start babbling away. I may be a bit slow responding, but you and everyone else knows why these days!

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  19. Bob K

    September 6, 2011 at 18:09

    Hi, my 23 year old daughter took Lamictal up to 100mg for about 2 weeks. She had eye issues but I am not certain they were Lamictal since it was similar to pink eye. She takes nothing else. Now she has quit taking Lamictal. Do you have any feedback about Lamictal and side effects? Maybe she should titrate up to a lower dose? I am afraid they will recommend something worse and want to have input and advice for her to consider….thanks

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  20. patientanonymous

    September 8, 2011 at 15:37

    Hi Bob K. Nice to meet you and welcome to my blog. Let’s see what we can do here. Also, I’m curious as to why she was taking Lamictal.

    What is her diagnosis? Does she have more than one? You said she takes nothing else so I am thinking no more prescription drugs. Anything OTC? Either regularly or at the time? Does she have any other health problems? Allergies? Has she ever had “Pink Eye” before? There are many causes, but one is that it’s part of the herpes family that will never leave you. It lies dormant and then can pop up again (think along the lines of having cold sores.)

    Some of these questions may prove to be irrelevant but some do help me a lot. That’s because Lamictal as an Anticonvulsant is kind of a tricky one. Well, all ACs are tricky! However, Lamictal freaks everyone out with Stevens-Johnson Syndrome that yes, is life threatening, but pretty damn rare for it to happen with this drug, and to kill you.

    If you don’t know about SJS and now I’ve kind of scared you a bit, I’m sorry. But rest assured, your daughter didn’t get any case of SJS. It appears in a certain form of a rash and generally appears most prominently on certain areas of the body (i.e. not your eyes, your skin.)

    I said before that all ACs are complicated. In fact, they all have a possibility of rashes as side effects. It’s just that Lamictal can really push the envelope there. Thus, it is mainly for that reason conservative titrations are administered when an individual starts the med.

    This is where Dr. PA is now going to lose it. Did you say 100mg IN TWO WEEKS??? Sorry, I’m not shouting at you. I’m shouting at whoever the hell prescribed that!!! And please DO NOT tell me on the first day they gave her a 100mg pill!!!

    That is way too much, way too fast! Even if she needed it for some dire emergency (and there are other ACs out there) it’s still extremely risky as far as I’m concerned!

    Again, Dr. PA is not a real doctor, but since it wasn’t something that occurred that was so dire (the irritation of the eye, nothing spread further etc…) now that she is off it, re-starting with a VERY conservative titration is an okay idea. It’s the only way to find out if she does have an adverse reaction to it, or if it was too much, too fast.

    I’m on it now, and my GP started prescribing it because I didn’t yet have a psychiatrist. She was so conservative, we started at 12.5mg for my first week! I’d been on it years ago, then went off, but she stuck to her guns. As things moved on, we titrated in higher doses because I was tolerating it well. But her attitude was, “We’re not having any fuck ups with you, my little PA.”

    So, yes. You could try again, but SLOWLY. As for the other ACs out there? There are a fair group to choose from. They all have side effects, but all meds do. If she ends up with an intolerance problem, there definitely are other options. I love my Topamax just as much as my Lamictal!

    So, this is pretty long. I hope I’ve managed to help you at least a bit. Please come back if you have any more questions or want to talk about this further. I’d be more than happy to.

    Take care,
    PA

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  21. john woolley

    November 23, 2011 at 08:44

    my name is john have been on clobazam for about 10 yrs with orther tablets my doctor told me i should not be them that long he has now put me topamax was the first one ok that long john

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  22. patientanonymous

    December 11, 2011 at 16:35

    Hi john woolley. Nice to meet you, welcome, and thank you for your patience along with everyone else. Here I am!

    I’m not sure what you are asking in your comment, or just making a general statement re: me losing my Clobazam and your own situation.

    I am on both and have no trouble with either. I do find it curious that a doctor would take you off a medication since you’ve been on it “too long.” Is that correct?

    If a med is working fine, don’t mess with it! That can/could do a lot of harm! Hell, even though my route was cold turkey (THE WORST!) I can’t believe what it’s done to me. You never pull a med straight off like that, unless it’s an emergency or of extremely, dire consequence.

    But again, if it ain’t broke, don’t fix it. I think if someone’s meds are fine, no side effects that are really bad, don’t change a thing.

    If I’m somehow off the path with your comment, please come back and let me know.

    Take care,
    PA

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