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bottlehalfull: Lamotrigine gives me akathisia

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bottlehalffull
I'm desperate to get off lamotrigine. I started it a bit more than a year ago, tapered up to 100 mg over the course of a couple months, along with trialing escitalopram, quetiapine, and settling on sertraline (now 25 - 37.5 mg/day, with the higher dose during PMS time). It was fine at first, I went from not being able to make myself any food more complicated than opening a bag and getting extreme exhaustion from trying to hang my clothes to dry to being able to cook and clean more or less normally. But then I started getting migraines and restless leg syndrome more often than normal. Both are things I've had before, and they are definitely influenced by my menstrual cycle, but I've been getting them more and more frequently in the past months. Now it's gotten to the point where it's hard to get a night of sleep, because I wake up like clockwork at about 4:50 - 5 am with my legs just not able to find a comfortable position. Only it's not just my legs. It's my entire spine, and my stomach even. Previously I'd only gotten it in my legs, and just the couple days before my period (unless I was dehydrated or had been drinking or... the point is, it was predictable and I knew my triggers). I also had about a week of peripheral neuropathy, my hands and feet constantly felt like they were asleep.
 
About a month and a half ago, when I went to my psychiatrist to renew my prescriptions, I brought it up. She told me to just stop taking the sertraline and see if that helped. It did NOT. I did a half assed taper (a few days of 1/2 the dose), then was basically cold turkey on sertraline for two weeks. It wasn't the worst thing in the world, but my restless-everything didn't improve one bit. And it was hard to not get in fights with my partner. So my next appointment, she told me to try taking half of my lamotrigine dose and see if that helps. I did a bit more of a taper than she suggested (dropped to 75 mg for around a week before dropping to 50 mg), and now I'm doing something like 25-50 mg. My pharmacy only has 100 mg pills so they're pretty hard to split accuately.
 
So now I'm about two weeks into the taper and feeling awful. Since yesterday I've fully been feeling like I have the flu. Body aches, that back of the neck head and shoulder pain, congestion.... Fully exhausted. Also having a real hard time relating to other people, to the point of having a hard time getting basic shopping conversations done. (Doesn't help that I'm in a country that's not my native language.) I know I didn't taper right, but I don't know if I should go back up in dose or what. Not sleeping is driving me crazy!! Before I started doing the taper, I was skipping doses occasionally to try to get at least one night here there without waking up before sunrise and needing to move. I didn't notice any bad effects, so I thought tapering would be fine.

 

I was probably going to say something else but I got distracted and really just want to go lie down. Basically, right now I feel like I'm at a crossroads. Try to wait out this awfulness and stay at my current low dose (about 1/3 a pill), or go back up since I didn't taper right anyway. The thing is, I am seeing a difference in the morning leg twitchies. With this lower dose, the feeling is less strong. It's still there, but a couple nights ago I was able to go back to sleep anyway. It seems like if I really try I can sleep through it at this dose.

 

If I go back up, and I don't even know what dosage I'd go back up to, I know I won't be able to sleep without some kind of sleeping pills. I have xanax and eszopiclone. I hate sleeping on xanax, I don't think it's sleep as much as it is some chemically induced unconsciousness, and don't want to develop a dependence on the eszopiclone. Yesterday I was reading that it increases the chance of infections, and I already feel like I catch every little thing that's going around.

 

Feeling real damned if I do, damned if I don't right now. I don't think my psychiatrist would be any help, considering she thought it'd be totally fine in the first place to just stop the sertraline, and then later thought halving the lamotrigine dose would be ok.

 

I just *know* lamotrigine is doing something to screw with all my mineral levels, but I don't know what exactly!! On a hunch I started taking calcium when I started getting the peripheral neuropathy and it literally disappeared same night. (Coincidence?) But it doesn't seem to do anything for the restless-everything. (I read recently that the name for "restless legs syndrome" in one of the Scandinavian countries translates to "feeling of being crawled on by ants" and I feel like that captures the feeling so much better than "restless".) I've also tried magnesium and iron. Iron maybe helps but my colon gets real mad.

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bottlehalffull

It may be premature to blame the lamotrigine withdrawal for my total crap flu-like feelings. Maybe it's a good time to dump my laundry list of other issues here for context.

 

First I'll start with my depression story:

 

I've had depression for my entire adult life. Mainly it's anhedonia, nothing is interesting, things I find fun don't stay fun for long and quickly just become chores. I need a strong sense of novelty to stay interested in things, including relationships (which gives me the impression that I "don't know how to love", let's blame one of my high school exes for that damaging self talk). I'll get really excited about something (or someone), then it becomes kind of boring, then it becomes a chore. It's hard to keep jobs, and hard to get the enthusiasm to even apply for jobs. I also get a lot of brain fog, this feeling of not quite being awake yet, and the kind of insomnia where I can fall asleep fine but after 4ish hours of sleep if I'm woken up I might lay in bed for hours trying to fall asleep again.

 

I had a bad experience with celexa/citalopram in my teens that scared me off of trying SSRIs in general for more than a decade. Sometime in the intervening years I tried wellbutrin (actually generic buproprion), I didn't notice any effects whatsoever, positive or negative. (This is in the time period that people were having issues with one of the generics manufacturers making bunk wellbutrin, maybe that was part of the story.) Most of my life I've been able to "manage" it by marking things as Need to Do in my brain and forcing myself to do them with my strong sense of duty. And by being pretty neurotic about diet--not "dieting", but being hyperaware that, for example, sugar without enough protein will throw me into mood swings, caffeine after 4 pm will definitely make it hard to sleep, stuff like that. I've tried sooooo many supplements, most of them I can't say whether they helped or not. (Though I support the site's policy of not recommending any but magnesium and omega-3's! I do notice a difference from them, and I think maybe high-ish dose vitamin D (5000 IU/day) as well.)

 

I've also had bad experiences with psychologists and psychiatrists so I don't get regular counseling/therapy even though I probably could use it. As an adolescent, because of a bitter divorce and custody battle I was forced to go to all kinds of court mandated counseling (including the psychiatrist that put me on celexa), but it was always painted by one of my parents as a tool for the custody case and I was interrogated after appointments what I was asked and what I answered. It would probably take years of therapy to get me to the point of being able to trust a mental health professional before the therapy could even begin working on anything else.

 

About a year ago I just stopped being about to deal. Maybe part of it was seasonal depression, there are a lot of other possible factors... And also because I needed a doctor's letter for my school and my unfinished master's, I started seeing a psychiatrist. With the psych meds, the crushing anxiety and fatigue that made doing laundry an all day chore lifted quite a bit. I now have the energy to prepare healthy meals, that kind of stuff. I do notice some emotional blunting, but at the time I started that's what I needed. It makes it easier to just let go of all the things that are demanding I do them RIGHT NOW. That also has me ignoring some responsibilities, but before meds I was also not doing a lot of things I needed to do, so I still feel like right now, I'm better with meds than without.

 

But.

 

My side effects from lamotrigine are getting worse and worse. The akathisia went from being a few times a month to most nights, and I just can't function if I can't sleep. So I just want off. It's sort of a shame, I do feel like it's working otherwise, but nothing I've tried really helps the side effects. And I feel like it blunts my reaction to stuff that would normally mess up my moods real bad, like alcohol or benzodiazepines, to the point where I can acutally use xanax occasionally and it works as expected for anxiety instead of making me lie around in a deep depression.

 

 

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bottlehalffull

Because that last post took so long, I'm just going to bullet point all the other possible confounding health factors:

 

  • chemotherapy about 6 years ago for aggressive lymphoma
  • possible hypermobility spectrum disorder (along the lines of fibromyalgia)
  • some kind of mild dysautonomia (probably related to the hypermobility)
  • severe mood and physical symptoms related to my menstrual cycle
  • asthma
  • borderline anemia
  • migraines
  • chronic digestive tract issues ("IBS" but that's not so descriptive anyway)

I think that about covers it. I'm not currently on any other medications besides the ones in my sig. I do try to take a cornucopia of supplements, most regularly B's, vitamin D, magnesium, fish oil when I can afford it (though it makes me bruise easily), and a multivitamin when I can afford it. Sometimes melatonin.

 

So it's really hard to say what I'm feeling at any given time is caused by what. I probably should start a symptom diary again... I tend to get overwhelmed by deciding which details to include. What's relevant?? Potentially everything.

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Gridley

Welcome to SA, bottlehalffull.

 

I understand your desire to get off the Lamotrigine due to the side effects. Just so you know, you are tapering much faster than we recommend, which is no more than 10% of current dose every four weeks. 

 

Why taper by 10% of my dosage?

 

Tips for tapering off Lamictal (lamotrigine)

 

Your fast taper would account for the flu-like symptoms, which are a common withdrawal symptom, as are body aches and back of neck pain.  Akathisia is a common side effect of lamotrigine, so you are in a difficult position.  Side effects tend to lessen as the dosage gets smaller.  Has your akathisia improved as you got lower in dose?  Could you stay at 30mg?  It's important to take the same dose every day.  We do not recommend skipping doses, which batters the nervous system and makes withdrawal worse.

 

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

Regarding the sertraline, it's best to stay at a constant dose of 25mg and not go to 37.5mg during PMS.  Your central nervous system needs stability and constancy, and going up and down in dose can be destabilizing.

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend that you've already tried are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

While it is often a first response to stress to take a B-Complex, in withdrawal it can be overstimulating.

 

Hypersensitive to B Vitamin or B-Complex  

 

We don't recommend multivitamins because if a problem arises you won't know which ingredient is causing it.

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

 

 

 

Edited by Gridley

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bottlehalffull

 

1 hour ago, Gridley said:

Regarding the sertraline, it's best to stay at a constant dose of 25mg and not go to 37.5mg during PMS.  Your central nervous system needs stability and constancy, and going up and down in dose can be destabilizing.

I'm not sure if I fully agree with that theory, since my body is already throwing me (and my GABA system) on a rollercoaster from the hormones. Honestly, I think maybe people would have a better time with psych meds, and medications in general, if hormonal cycling was included with dosage timing recommendations.

 

 

I typed a bunch of other stuff and hit control z and it disappeared, never to return. I'm going to end this post before I flip the desk........

 

Is there a plain text way of typing posts on here? WYSIWGs drive me nuts, they always do something unexpected...........................................

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bottlehalffull

This is the scientific rationale for taking an increased dose (or any dose) of SSRI between ovulation and menstruation:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC23979/

(I guess these authors are calling PMDD "late luteal phase dysphoria disorder")

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bottlehalffull

I have some questions about symptom naming. I'm not sure if it makes more sense to put them here or in some symptom thread.

 

The first is "akathisia."

 

I have a hard time describing what this feeling is, and some descriptions of akasthisia seem like they fit but I've seen other people on here describing something that sounds way different as akasthisia. Here's my best attempt to describe it. I get a strange feeling that seems to be in the nerves. It's strongest in my feet and calves, but more and more often occurs in my entire body, with I guess hot spots along my spine and in my stomach. It's a physical feeling, not a mental one. Moving my body, especially rolling around on the ground to kind of massage my spine helps. Showering seems to help, too. It's sort of like the nerves are really asserting their presence. Like they're all saying LOOK AT ME!!! at once. It's not pain, though sometimes it approaches pain-like. They're just all on. Sometimes almost humming, maybe? It's not the right word. So I have an inability to sit still stemming from this physical feeling. As opposed to a mental urge. It starts in the early morning, a little before sunrise, and some days goes away when I wake up and some days sticks around until noonish. It's the main reason I want to quit lamotrigine. Before going on psych meds, I would very occasionally (a couple times a month or less) get a leg/foot feeling that seemed describable as "restless legs syndrome". This feeling is similar, but compared to the RLS doesn't feel as muscular (the RLS would sometimes cause sharp calf cramps), feels more diffuse and crawly.

 

I'm seeing people on here describe something that sounds more mental, more related to anxiety, as akasthisia and want to know if I'm choosing the wrong name for my unnamable feeling.

 

The other thing is "brain fog."

 

I get this thing where I can't concentrate. Any input through my eyes especially seems hard to process. Like I can stare at a paragraph and recognize all the words but I'm not reading it as a cohesive thing. It feels like I'm somehow behind my eyes, like what they're bringing in isn't being integrated into my thoughts and perception correctly. It feels like I'm in a fog or my head is wrapped in cotton, like everything is sort of dulled, farther away, it's harder to see how things I'm seeing are related to me. That description might not be accurate. Sometimes it almost feels like my vision is blurry, but if I put one hand in front of one eye and then the other, my individual eyes can see fine but my brain isn't integrating the two images into one coherent image. Recently I've been wondering if it's a type of painless migraine/aura. I've been calling that brain fog for a long time (I've had it on and off as long as I can remember), but I'm seeing people on here describe a similar feeling as depersonalization/derealization. But I don't really have any loss of "self." I feel completely in my body, but I feel like there's a divider or a filter between me and what's coming through my eyes. My short term memory is also really flaky at these times, and I am easily distracted and constantly forgetting what I'm doing. I'm fine doing tasks like washing up that don't take a lot of brain power, but doing anything on a computer is very hard, probably from the intense visual input. I also have a hard time caring enough to follow anything on TV, or listening to anyone speaking. "Caring" might not be the right word, either. Maybe it's more of an attention span thing. It takes longer for my brain to process what anyone is saying.

 

Interestingly enough, though, there was a feeling I occasionally used to get as a child when I laid down that was more dissociated that does sound a lot like the dp/dr some people describe. That was almost out of body, I felt like I was floating in space, like my hands and fingers and arms and legs were sticks, but at the same time they were huge and doughy. I felt infinitely large and infinitely small and could vertiginously switch between those sizes if I focued on one or the other. Like I was feeling my connections in both 2- and 3-d. (2-d in the sense of a line being defined by two points and having no thickness or dimension, not like I was flattened to a piece of paper.) The "brain fog" feeling is a totally different feeling. If I want, I can trigger the dissociated feeling with weird breathing and concentration and a certain amount of sensory deprivation. The brain fog comes and goes as it pleases, usually comes in the morning and may or may not leave all day, I can't figure any trigger for it. Sometimes eating helps, sometimes it doesn't.

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bottlehalffull

So far the taper seems like it's going ok. Summary of the past few days, main question points underlined:

 

Current dose: 25 mg lamotrigine, 25 mg sertraline

Supplements: vitamin D, B-complex, zinc, magnesium, krill oil (more or less the same as I was doing before starting the taper, except I was using fish oil before instead of krill and I'm taking more Mg now).

Does tulsi tea count? I take it for dealing with allergic inflammation, but it seems to affect my moods positively as well.

 

Symptoms/status:

  • Nausea for a few hours after taking my lamotrigine, along with a mild anxiety and/or akathisia spike (lots of pacing around and/or indecision on what I should be doing right now kinds of feelings).
  • The weird nerve feeling/akathisisa(?) that used to just be in the AM seems to be lasting all day, but at a very low level. Not disruptive to sleep like it was before starting the taper. Most pronounced in feet and gut/lower spine.
  • Sleep isn't amazing but I'd had issues with sleep before the taper. And could be from nibbling on chocolate too late in the day (dark, so possibly significant qty caffeine). Been waking up 2-5 times a night, normal for me is once a night to pee.
  • Brain fog: I don't really know how to evaluate, I'd had a lot of problems with it before the taper (and before trying any psych meds).
  • Mood: generally good. Maybe I feel more motivated. But that could also be because I feel like I'm actually actively doing something by working to taper off the LTG. I also thought I was feeling good and more motivated when I started taking all these meds and it might have been for t he same reason.

I've also been getting at least 15-30 min of mild exercise per day, I'm sure that's helping. (walking, yoga, walking up and down stairs, etc, making sure I'm at least a little out of breath from exercise for a while each day) Tonight I think I'm going to walk until exhaustion (~1.5 h moderately brisk pace) since I haven't done that in a while and it usually keeps me knocked out all night.

 

So far, so good from such a fast taper! I'm not sure how long to hold at 25 mg LTG, I saw some people saying that they'd get their worst withdrawal symptoms 10-14 days after a LTG cut so I guess I should probably hold here until the new year?

 

Anyone have any tips for dealing with the post-dose nausea? Right now I'm taking 1/4 of a 100mg tablet (eyeballed) at about 16:00. Taking it with or without food doesn't seem to change much.

 

Yesterday I tried breaking up the tablet chunk with a little water and some chia seed thinking the chia seed gel would sort of approximate Oraplus. It did form a nice suspension, but I think it might have made the nausea last longer (because it was releasing over a longer period of time?). In general might not be a bad method for making a suspension and get more consistent doses, though. Supposedly LTG absorption isn't affected by food so I'm taking that to mean that it won't stay stuck to the soluble fiber in chia gel once it hits the digestive tract. Maybe @brassmonkey has some idea?

 

And sleep: My gut feeling tells me if I'm having a stretch of bad sleep, it'd be helpful to take some kind of sleep aid. Maybe every other night to make sure I at least get solid sleep every couple days. But I don't want to end up with a tolerance/dependence to any sleep stuff. Does it make sense to rotate between sleep aids? I have melatonin, benzos (lorazepam, clonazepam, alprolazam), eszopiclone, quetiapine, risperidone (um, scary?)... (I end up hoarding drugs because I fill prescriptions then I don't really like taking them.) Are any of these less harmful or preferred? Should I rotate or stick to one?

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Altostrata

Hello, bottle.

 

I am confused about your recent drug history. Are you changing dosage for sertraline and lamotrigine at the same time? Please post a simple chronological list of all your drug changes for the last 6 months, and when various symptoms began.

 

You've been taking lamotrigine for a while, did it ever make you nauseous before?

 

What we see is going on and off drugs, skipping doses, going up and down in dosage can cause the nervous system to become sensitized to the drugs. This is called "kindling" among all psychotropics. You might have become sensitized along the way, your prior assumptions about drug effects may not be true any more.

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bottlehalffull

No, my doctor wanted me to cold turkey the sertraline to see if it helped the askathisia and I only got down to half a dose (12.5 mg) before I felt awful and went back to her. I think I was on a lower dosage of sertraline for about two weeks, then went back up to 25 mg and started tapering down the lamotrigine instead. I'll try to make my signature more clear.

Lamotrigine never made me nauseous before. My main issue with dose changes on the taper up to 100 mg was extreme exhaustion and brain fog.

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bottlehalffull

Well along with my inability to focus on one thing for very long I've gotten bored of trying to keep track of wtf is going on with my health. It's so exhausting! It's so hard to detangle what's from withdrawal and what's from something else.... is it my messed up hormones? long term side effects of chemotherapy? MTHFR mutation? Ehlers-Danlos? I'm sure it'd all be easier if I trusted some consumer health tracking app with my data, but I don't and I think I have good reason to.... I'm sure some corporate background check company would love to get their hands on a leaked database from one of them. Or insurance company, whatever. Maybe I'll write one.

 

I've had body aches the past few days. After a really good stretch, maybe a week? Still holding at 25 mg lamotrigine, 25 mg sertraline. And my period is late, it that a cause or effect? No idea what's causing what. I'm gonna just shut up and take my pills now.......

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Jmizz

@bottlehalffull i would tag alto and some other mods when you want advice. I don’t think they necessarily follow each additional persons thread. What you are describing sounds a lot like what I went through when I dropped from 50-37.5 in about a 3-4 week stretch. I felt some initial nausea immediately following the drop in dosage for a few days, I would get the nausea after I took the doses and periodically throughout the day. I also dealt with body aches, for me mainly my upper back and neck and pain on the back of my head. The nausea seemed to settle after about 4-5 days and then I had a period where I felt good for around a week or so, mentally the best I’d felt in some time. Then I got hit with some depressed moods for a time. I would imagine as quickly as you dropped from 100-25 your body is still prob adjusting to lower doses and there may be a few more bumps before you settle. Again I’m just giving my personal experience. I’d run your symptoms by the mods, especially alto and see what she thinks. She likes 24 hour symptoms lists with the times you take each medicine.

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bottlehalffull

I was feeling pretty stable for about a month, so I decided to try another lamotrigine taper. Actually what prompted me to try tapering was probably not being stable, as in I forgot to take it for a couple days and felt fine and so when I started taking it again I decided I'd take a lower dosage. Something like 23 mg/day, but I spilled when I was making the dilution so really I don't know. Probably less than that. I should just toss the messed up dilution but I have a fear of running out because my doctor didn't renew the prescription when I saw her last month. I probably have something like 6 months worth if I stay at 25 mg/day, but I still don't feel comfortable throwing stuff away. (Also I'm a hoarder.)

Been having body aches and fatigue since 8 Feb. In that crap cycle of being too exhausted to exercise and getting deconditioned so I don't have energy to exercise. Plus I haven't been eating enough. I just have no appetite. Since Thursday I brought my dose back up to 25 mg, the first night I had 6 am akasthisia that eszopiclone (0.75 mg) didn't help me sleep through, but as of today I think my body aches are less. I should probably just stay at 25 for a while but I feel like I'll be "wasting" the past week or so of feeling crap withdrawal symptoms.

There's also the X factor of wtf is going on with my hormones. I had a 44 day cycle, then a nice normal one where I'm pretty sure I ovulated, had the nice mood boost during the high estrogen parts of the cycle, then this month I think I didn't ovulate again: barely had any ovulatory mucus (not a 100% reliable signal of ovulation, actually just a sign of an estrogen spike) and didn't have any energy or mood spike around the high estrogen days. I have this big knot that I don't know what strings to pull on first: the depression? the crap sleep? the hormones? All the while there's this fatigue that can be caused by any one of those things (all those things?) that makes it hard to do anything to change anything.

Sometimes I feel like I''m trying to claw my way out of a pit but the dirt of the edge keeps crumbling. Maybe if I keep collapsing the walls, the floor of the pit will get higher eventually. My partner has untreated depression and has been having work troubles that increase the depression which increases the work troubles. We have a pretty good chance of being homeless in a foreign country in the next year if nothing changes........ A year and a half out from deciding to try antidepressants and I feel like I'm doing better than when I started, but also feel like I've been treading water for the past.... six months? Woo mixed metaphors........

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