200 mgs of lamotrigine: so far, not so good

Three weeks ago, I titrated down to 200 mgs of lamotrigine. Enter the lethargy, loss of focus, extreme fatigue that are common side effects of lamotrigine/lamictal withdrawal. I was getting twelve hours of sleep a day, still struggled to drag myself out of bed in the morning, and spent every day feeling unfocused and weird and generally out of it. I wasn't thinking clearly, so it didn't occur to me immediately that these symptoms were related to lamictal withdrawal until I talked to my therapist last week.

I was then moved to do a bit of research, and found a blog post called Lamictal (lamotrigine) withdrawal from hell. Hardly an encouraging title. Hell, I'd even say it was terrifying. But I was brave, and my courage was rewarded with a ton of useful information, including extended quotes from other lamotrigine users (and former users) describing the incredible fatigue they experienced as they weaned themselves off this medication. In order to combat this (and other side effects), many of them found that they needed to return to the higher dose for awhile, then lower the dose more gradually, over a longer period of time.

On Sunday, I emailed my doc and we decided that I'd go back up to 250 for a week. My fatigue has gotten better, but on the downside, I've had trouble sleeping, and I've felt more agitated. I've decided to try going down to 225... we'll see what happens.

Lamictal, 250 mgs: So Far, So Good

Two weeks ago, I dropped from 300 mg to 250 mg. In the past few days, I've noticed that I'm feeling a bit sharper, mentally. I've begun craving healthy food again, after several years of craving salt, fat, and sweets (normally, I'm one of those lucky people who can normally look at a plate of cookies dispassionately; not so on Lamictal). Best of all, there's been no drop in my mood whatsoever!

The downside: I've had some GI issues (constipation and gas). My muscles are stiffer. I've also been really tired, but this might be my body's way of telling me it's OK to lower my Ativan dosage as well :)

Long time, no write - but I'm back!

I started this diary to record my experiences as I started taking Lamictal (generic lamotrigine) for psychotic depression. Lamictal has a good track record for treating mood disorders, but there are side effects, and they're different than anything I experienced on all the SSRI's I tried over the years. I needed to be vigilant about Stevens-Johnson Syndrome, a potentially deadly skin rash. I needed to track the drug's effect on my sleep, food intake, and cognition. I needed to figure out how much the medications side effects were interfering with the intended purpose of taking the damn thing in the first place: treating my goddam mood disorder. I ultimately stabilized on a dose of 300 mg, and I've been taking that for six years.

I'm now beginning the opposite process: titrating down, in the hope of going off the medication completely! My mood has improved dramatically over the past several years for various reasons, but in large part because I split up with my former partner.  I have my own place, I'm responsible for my own problems, and I'm no longer apologizing several times a day for the impact my disabilities have on someone else.

As I lower my Lamictal dosage, I'm feeling the same need to track my mood and various side effects, and that's why I'm back on my blog after all these years. As before, I hope I can be a useful resource for others who are taking this medication ... only this time, I'm also hoping to help those who are maybe trying to stop taking it.

Lamictal, Abilify, And Direct Sunlight -- They're Not Kidding

The little sheet they gave me with my Abilify scrip warns against direct sunlight.  Lamictal, as we know, can really screw with your skin.  Combine those with an outdoor baseball game and you have ... well ... screwed up skin.

I attended a baseball game three weeks ago.  In spite of the 60 SPF sunblock I put on my arms, they're still peeling.  After three weeks.  As for my shins, where I forgot to apply sunblock entirely, let's just say that they were pretty screwed up.

At first they followed the usual sunburn pattern.  They turned red and sensitive.  They started peeling.  Then, surprise!  Petechiea.  Those are those little red spots on the skin which I experienced on Day 2 after exercising.  They went away after a few days, and I am once again peeling like a mofo.

I burn pretty easily, but I've never had a burn like this that just keeps peeling.  Needless to say I broke out the aloe.  But I would have been happier if I'd applied more sunblock.

Can Haz Cat!

In a recent post, I wrote about how my husband and I were kind of stuck in a netherworld of wanting another cat, but of not feeling ready.

Last weekend we took a trip to the SPCA to test the waters.  By that point I felt I was ready, but my husband didn't.  Then, we met our cat.  It was a cat I had seen before but never visited; every time I saw her, she already had a visit tag for that day, so I needed to visit cats who hadn't been visited.  But I felt like I wanted to get to know her better.  I liked the way she looked at me -- as if she knew me.

She's still adjusting, of course, but still seems very different from our previous two cats.  She doesn't say much, for instance, even when she's hungry (our other cats would wail and complain, and when we told them they'd have to wait for dinner time, they'd start nipping our feet).  However, she's a sweet kitty and is already proving herself to be a lap cat.

I knew that cats were an important part of my self-care, but I'd forgotten how much.  Since the arrival of SC, my anxiety levels have plummeted by a factor of ten, at least.  I'm less depressed.  I'm more hopeful.  I don't just love cats, I need cats.

First Year on Lamictal: Efficacy and Persistent Side Effects

I started this blog one year ago today.  Since then I've been through a lot: marital problems and the loss of the two cats who'd been keeping me sane all these years.  And that's not even getting to the drugs.


Ah yes, the drugs.  I'm on a lot of things besides 300 mg of lamictal.  I'm also on 5 mg of Abilify, 70 mg of Vyvanse (for ADHD), 1.5 mg of Ativan, and (soon) 5 mg of Adderall (also for ADHD).  That's not even getting to my allergy meds.  I worry about my liver sometimes.


But this blog isn't really about the other drugs, it's about my experience with Lamictal -- how it's affected my mood, and what side effects I've had to put up with.


Lamictal has definitely stabilized my mood.  A year ago, my mood was more positive than not, but still unstable.  At 12.5 grams of lamictal, I started to feel better, but I definitely still experienced my 3pm to 7 pm trough.  I didn't start to feel stable until I hit 100 mgs.  I titrated up to 150 mgs, and did pretty well until the Autumn Equinox.


Since my depression is so sensitive to light, I went up to 200 mgs and broke out the sun lamp.  As the days continued to shorten my mood continued to destabilize.  After a few weeks at 300 mgs, I needed to start Abilify to smooth things out and to ease my depression.


I've been pretty stable since then, especially considering the deaths of my two cats in the space of two and a half months.  The cast have thrown me for a loop.  I'm sleeping more, and my motivation is shot to hell, but soon I'll be taking Adderall in an attempt to address that.


And now is the part where we address the side effects.


Lamictal seems to rewire your whole nervous system.  Like other brain meds, you might get headaches, dry mouth, dizziness, gut trouble, and sleep disturbances.  Unlike other brain meds, it affects your skin, muscles, sense of balance, and sometimes your bladder too.


Personally, I've experienced everything but the headaches (and the dreaded Stevens-Johnson syndrome) at one time or another.  Here's the breakdown:


Urinary Problems


I occasionally have trouble peeing, and this has been especially true since starting Abilify.


GI Problems


I've had occasional diarrhea and loose stools, but by far the worst thing was the severe constipation I experienced at 200 mgs.  The weird thing about this is that I had no constipation at any other dosage.


Sleep Disturbances


In the beginning, I also had severe sleep disturbances (this is by far the biggest side-effect tag on this blog). The meds gave me delayed sleep phase -- I could sleep a normal eight hours, but only between 3 am and 11 am.  Since I had been sleeping much more normal hours, this was incredibly frustrating.  This problem went away when I started using my sunlamp in the Fall, and it hasn't returned since I stopped using my sunlamp in the Spring.


Balance Problems


Before I injured my shoulder, I was lifting weights a lot.  As I recover from my injury, I'm doing yoga.  Both exercises require pretty good balance, and I notice that I sometimes have more trouble with this than I used to.  However, it's gotten better the longer I've been on my meds.


Muscle Tension


This is actually a positive side effect.  Whereas some folks notice that they're muscles are tight and sore, my muscles have loosened up significantly.  I'm much more flexible, and I don't get delayed onset muscle stiffness anywhere near what I used to get.  (Delayed onset muscle stiffness is that thing where you get stiff and sore hours to days after exercising).  Since I was lifting weights, and plan to return to lifting weights, this is pretty sweet.


Skin Problems


Aside from the Dreaded Rash of Deadly Doom, aka Stevens Johnson Syndrome, lamictal can mess with your skin in all kinds of ways.  And indeed, I've had skin issues since Day 2.  Anything that happens to my skin seems to be amplified, whether it's heat rash, sunburn, or insect bites.  This is another side effect augmented by Abilify (which actually warns you away from direct sunlight).  


To give you an example, a month ago I wrote about a sunburn that I had gotten three weeks previously.  It was still messing with my skin.  It has now been eight weeks since that sunburn, and my skin is still a weird texture, and it only stopped peeling a few weeks to.


The moral of the story is, SUNBLOCK.


The Most Important Thing I Have Learned About Lamictal


One of the posts that makes the consistent top five on this blog is the one about where to find Teva lamotrigine.  Why does this matter?


For whatever reason, lamotrigine's bioavailability can vary by something like 20%.  Isn't it great that we regulate drugs in this country?  Anyway.  If you want the same bioavailability as the brand name, you need the Teva generic.  I personally had a disastrous experience on the NorthStar version, and I know I'm not the only one.  I got the NorthStar version at the Costco Pharmacy.  As for Teva, Walgreens always carries it.  To be safe, I fill my scrips at Walgreens. 


And that pretty much wraps up my first year on lamictal.  This blog has gotten 11,538 page views since its inception a year ago.  I hope it's helped a few people along the way.

Overcoming My Fear of My Own Mind

The other night, as I was falling asleep, I realized that I was actually thinking about myself.  Boring stuff mostly, where I'm going, how to get there, my complete lack of confidence in my ability to do so.  The odd part is that it wasn't scary.

Since my psychotic episode, I've been terrified to delve too deeply into myself.  I've had a creative block.  My meta-cognition has sucked.  I've been put so much effort into hanging on by my fingernails that I haven't had time to think about myself ... but it's also something I've studiously avoided.  I've been afraid of my own mind.

My psychotic episode, and the subsequent mood issues, makes me feel like my mind completely betrayed me.  I'm a person who has always prided herself on being rational, on being able to think straight, of only holding well-reasoned opinions.  The belief that the universe is devouring light particles is neither rational nor well-reasoned.  The fact that I could believe such a thing, even while knowing it was false, is deeply frightening.

The belief came from such a deep part of my mind that I've been afraid to go back, so to speak.  I've been afraid to look into my own depths.  What if I'm overwhelmed again?  What if my mind starts lying to me again?

Last night, something shifted in me.  It was as if I'd been hanging on to a branch for dear life.  If I let go of the branch, I'd go over Niagra Falls.  I had to put all of my energy into hanging onto that damn branch, or else.  Then, a channel opened up in front of me, a peaceful stream, and I can start making my way toward it.

I still find myself hoping that the stream isn't too deep.  I'm afraid of what else might be in the water with me ... giant sturgeons, ichthyosaurs, anglerfish ... but at least I don't hear a thundering waterfall in the distance.