Jmizz: Lamictal taper suggestions

[Jmizz]

@Altostrata

it sure seems that way. It sure feels like my body is sayings it’s had enough, so I’m wondering if I’d be fine reducing and going off that afternoon dose.
 

Problem is I’m too scared to do anything right now until we are home with the baby. I’m handling the drop ok but I’m wobbly emotionally. The thought of being in the hospital for 2 days and prob not getting much sleep seems daunting atm. I guess I’ll just monitor for a bit and weigh my options. In the past it seemed I would have an emotional jolt after the physical effects let up. So I will just wait a few more days and see what my body is telling me. Boy I’d really love to only be taking two doses when I go back to work after the baby. I’m allowed 3 months off and then I have to be given any vacation I had scheduled during that time when I get back. So there is a chance I can be off almost completely From July until mid November

[Jmizz]

@Altostrata

 

heres a new one for me.

 

4:30am-woke with some pretty rough itching/tingling on my hands...it eventually passed and I went back to sleep

 

edit: this May have been a mosquito, I just killed one in my bedroom and it was full of blood

[Altostrata]

There must be a few mosquitoes in Baton Rouge.

 

Don't worry, you'll be sneaking off lamotrigine by tiny amounts, maybe 0.25mg at a time.

[Jmizz]

@Altostrata
 

if you haven’t noticed, I’m a total mess when I lose it for a few days. I thought I was having an allergic reaction 8 hours after my dose.

 

Hey progress is progress. Destination zero year 2034 haha

 

 

[Jmizz]

@Altostrata

 

By the way...

 

there’s more than a few and you have to keep a close eye on dogs and small children or they’ll fly off with them. We aren’t all on the bayou but everybody is within an hours drive haha

[Jmizz]

@Altostrata giving myself a drop log. Tagged you in case you want to take a look.

 

May 30 (day 3 post drop)

Appetite struggle all day

0630- waking right as daylight breaks

06:30-8:00 some restless legs

8:00-11.5 mg lamotrigene

9:00-ok so far

10-11 weird feeling bc normally I’m feeling pretty bad, feels funny

Noon-out in sun hard to tolerate 

1230-2:00 seemed shaky/possibly sun and heat

2:00-5mg lamotrigene

3:00-5:00 shaky sun heat hard to tolerate/fatigue 

8:00-20.5mg lamotrigene

9:00-50mg trazodone 5mg melatonin

Sleep 10:30-6

 

May 31 (day 4 post drop)

Appetite struggle all day 

6:00 wake right as daylight breaks

6:00-8:00 can’t go back to sleep

8:00-11.5 mg lamotrigene

8-10 don’t feel as activated as usual

10-12 fatigue/hard to tolerate heat

12-2 okish

2:00-5mg lamotrigene

2-3 queasy blah shaky

Irritable evening 

8:00-20.5mg lamotrigene

9:00-50mg trazodone 5mg melatonin

Sleep 10:30-6:00

 

June 1 (day 5 post drop)

Appetite still a struggle 

6am wake right as daylight breaks 

6-8 maybe dose a few times 

8-11.5mg lamotrigene

8-10 not much/no appetite 

10-2 fatigue is awful

2-5mg 

2-5 fatigue eases some/irritable/queasy blah

5-8 not horrible 

8-20.5mg lamotrigene

9-50mg trazodone 5mg melatonin

Sleep 11-7

 

 

June 2nd (day 6 post drop)

Appetite still a struggle all day most of the day

7am wake

8am 11.5 mg lamotrigene

9-1030 uncomfortable, achy upper back activation is back, queasy, no appetite ate egg sausage sandwich,watery eyes

11-1 no fatigue today, energy level better just moving around bc of activation, heat didn’t bother me as much 

115-2 pretty dosey it seemed

2-5mg lamotrigene

2-3 improved mood and dosey feels but seemed to make me jittery until around 5

5-8 manageable not great 

8-20.5 lamotrigene

9-50 traz 5 mel

Slept 11-7:30

 

June 3 (day 7 post drop) decent day today

Appetite maybe came back a little during the day

7:30 still waking as soon as light breaks in the room/ able to fall back asleep a few times 

8:00-11.5 mg Lamotriene 

8:45 kind of activated/kinda itchy/leaky eyes

9-1030 activation kicks up/stay busy/achy upper back

11-activation settles some 

12-1:45pretty decent 

145-2 a little dosey

2-5mg Lamotrigene

2:30-mild headache at wal mart pickup/some anxiety

3- back home, feel ok/manageable 

4-7 was pretty good...overstimulated myself a little fishing with my son 

7- had a good dinner, ate pretty well and had a decent appetite

8-20.5mg lamotrigene

9-50mg trazodone 5mg melatonin

[Altostrata]

Stay out of the sun.

[Jmizz]

@Altostrata

 

Yes ma’am. These notes are from before I talked to you guys about the sun. I’ve been limiting since. For what it’s worth though, it seemed worse the couple days right after the drop with the sun and heat.

[Jmizz]

@Altostrata

 

is pretty intense soreness in muscles and joints more of a withdrawal effect of lamotrigene or a side effect

 

However I remember being pretty sore in the year after the Zoloft cold turkey but I was stable mentally and never thought anything of it, so it could just be a legacy from all the other stuff. Who knows. I’ve been doing relatively ok, the last couple days I’ve seemed pretty sore everywhere after waking up in the morning. This caused a rough morning for me today bc I obviously started stressing about it. This afternoon was pretty good though. 

[Altostrata]

I haven't heard of sore muscles being related to lamotrigine reduction. What's your current drug schedule?

[Jmizz]

@Altostrata

 

I had another spell with the morning soreness around the time I went to dosing 3x daily back in January. But I didn’t notice it at first when my dose schedule was 15/5/17.5. It seemed to show up in the mornings when I moved the 2.5 to night time. I always have had issues with the soreness at times even during good periods, just less noticeable. It just recently seemed to kick back up. I’ll keep you posted, could just be a weird fluke.
 

my schedule is 

 

11.5mg lamotrigene at 8am

5 mg lamotrigene at 2pm

20.5 mg lamotrigene at 8pm

50 mg trazodone at 9pm with the 5mg melatonin

 

ive had a few days this week where I fell asleep almost as soon as my head hit the pillow and that’s new. I usually have to wait for the trazodone to really kick in but I fell asleep as soon as I took it a few times this week. I’ve also had some really good moments at times in the afternoons.

[Altostrata]

I am wondering if the trazodone isn't causing the aches via its evil metabolite m-CPP.

 

16 hours ago, Jmizz said:

ive had a few days this week where I fell asleep almost as soon as my head hit the pillow and that’s new. I usually have to wait for the trazodone to really kick in but I fell asleep as soon as I took it a few times this week. I’ve also had some really good moments at times in the afternoons.

 

This is good, right?

[Jmizz]

@Altostrata

 

i guess it’s possible. I remember the upper back pains and shoulders when I was in Zoloft withdrawal and didn’t know it, I would always have periods of soreness which I would attribute to sleeping weird or something. The actual pain in my joints was something I never experienced until lamictal was added. I’d been on trazodone for about 6 months at that point. As I have said I could be wrong, but to me trazodone has never seemed to give me problems. But I’m sure it being in the mix does effect things. 
 

I had several weeks with no soreness, so it may just be a cycle from the CTs coming through. The ear and head pressure sort of came back too but far milder than I remember in the past.

 

and yes that is good. Seeing some improvements is always a good thing and there are definitely things improving in the middle of the chaos.

[Altostrata]

Let's see what lamotrigine tells us next.

[Jmizz]

@Altostrata hopefully that rascal will let me have this baby before it flips out on me again haha. At least I’m getting some pretty good afternoon/evenings. Still a little obsessive in the mornings, don’t feel very activated, and the nausea is mild if anything lately...pretty sure it’s still saying too much in the morning but I’m trying to hold on to functionality until after the first of July. I’d like to make some moves during the time I’m off work after the baby is born without losing control. I should have a good almost 4 month stretch off work when you factor in my vacation and holidays with the baby leave.

[Altostrata]

Do you still get a little surge from the morning dose? You might reduce it by 0.25mg. Lamotrigine is finicky.

[Jmizz]

@Altostrata

its been sort of weird. I don’t feel like over activated jittery anymore or at least not near as bad as in the past. Most days I stay busy doing something during the 9-11 window out of habit since I normally feel jumpy. Really I haven’t felt the bad jitters since I dropped aside from like days 6-8 after the drop then it went away. This drop was way better than taking a little off the night it seemed. The last few days it’s been moreso waking up and being obsessive about things, at the moment I’m obsessive about this uptick in soreness. Seems I wake up pretty sore, the morning dose kind of gives it a jump and it wears off around 12. The 5mg at 2pm maybe has a mild effect on the soreness around 4:30-5 and then it seems after the night dose there is an uptick also but then I fall asleep. I feel pretty close to normal from lunch on, minus the stress of taking my doses. I really need to try and find a more convenient system for myself and maybe something more easy to carry around so I don’t stress as much about that.

 

Symptom wise its all manageable at the moment. I try not to have knee jerk reactions. So I’ll let it play out for a few more days and see if anything changes. I’ll let you know how tomorrow goes. 

[Altostrata]

Yes, you were always taking a little too much lamotrigine. But it's done its job.

 

After you take each dose of lamotrigine, the soreness increases?

[Jmizz]

@Altostrata

that is how it has seemed lately. I’m monitoring it. Soreness has been an issue for me since the very first Zoloft CT. I had random unexplained soreness throughout that year looking back and now realize what it was. It would come in waves. I remember once considering a chiropractor bc I thought Id messed my spine up. I now realize that was a wave and I was being obsessive. 
 

when I started on lamictal, it seemed to effect my joints more. I was already taking too much before I found y’all. I think dropping from 50-37.5 made it more manageable. I remember the first few nights when I switched from 15/5/17.5 to 12.5/5/20 the morning soreness was awful for a time and then settled. So I interpreted it as taking too much at one time caused the soreness. However it may have been bc my body was getting used to going 12 hours without a dose. It’s all so confusing and you never really know what is what. 
 

i will say that once I recovered from this last drop it seems my baseline is higher. I take that as a good sign. My afternoons have been pretty good the last few days. Mornings are a little shaky but activation wise it’s less, it’s more of racy obsessive mind and fatiguey fog I’ve been having for a few days. 
 

so bc I metabolize so fast, the thoughts of ever going back to twice daily or once daily dosing is probably not going to happen? Right? Even though I seem to do better when less in my system. I know you had said lamotrigene will dictate that, I’m hoping it dictates me off the daytime doses haha. Life would be so much less stressful if I just had to worry about 1 dose or even 2. Not much I can do I guess except see how it goes.

 

[Altostrata]

No, you may eventually be taking lamotrigine once a day before going off altogether. We'll have to see if you stop getting "dosey" before your doses.

[Jmizz]

@Altostrata

 

ok good, it seems I get dosey before my doses after I drop for about a week or so but then I get used to it and feel like I could go on with my day without it, I hope that continues as I shave portions.

[Jmizz]

Hey @Altostrata just wanted to let you know my wife and I welcomed our second son on June 27th and I’m doing fairly well for the most part. I’m dealing with the natural stress and overstimulation of that and trying my best to acknowledge and accept the uptick in symptoms that have come as a result. I feel the stress is there but only a few moments have been really stressful. Mostly I’d say the overstimulation of everything and people visiting etcc has been the biggest struggle. I’ve been holding completely steady on 11.5mg/5mg/20.5mg of lamotrigene and still taking the 50mg of trazodone and 5mg melatonin every night at 9:15. My wife has been handling all the nighttime duties (saint) and as a result I try to entertain the 3.5 year old throughout the day since it’s still a struggle to rest during daytime hours, especially on the heels of such a big life event. I’m sleeping great from 10-11 until 7 every morning. I’m off work for several months so I won’t have the deal with the stress of that. Not real sure what my next play is going to be or when yet, I’m going to continue on for now and try to settle in to my new life. 

 

i still have my moments of struggle but it seems I can rationalize things better than in the past and sort of snap myself back out of it quicker. That part is easier when I’m holding my meds bc I can accept that I’m still recovering from the past debacle and not actively causing my problems. I don’t know if that makes sense. As always I want to thank you for all the help and attention you have shown me. Months back I would have been in the fetal position at home instead of handling the birth of a child, even if it has been a bit rocky, I was still able to experience the joy and amazingness of it all.
 

just thought I’d pop in and say hello with an update.

 

 

[ChessieCat]

Congratulations to you both.  It's lovely to hear some good news like this.  Not just the birth of your baby, but that you have been coping well and have been able to enjoy such a precious time.

[Frogie]

Congratulations on your and your wife’s new bundle of joy!

 

 I’m glad you are doing so well despite everything going on. That takes great strength!

 

Take care,

 Frogie xx

[Jmizz]

@ChessieCat @Frogie

 

thank you both for the kind words and encouragement! Hope you guys are doing well or well enough today!

[Frogie]

Just now, Jmizz said:

@ChessieCat @Frogie

 

thank you both for the kind words and encouragement! Hope you guys are doing well or well enough today!

Hanging in there😊

[Altostrata]

Congratulations, Jmizz and family.

[Jmizz]

@Altostrata@ChessieCat @Shep @Frogie

@brassmonkey

 

Hey guys, I want to first congratulate you Frogie! What an amazing feeling that must be, hard earned. 
 

So I wish I had better news on my end. I’m in a brutal wave and have been for some time. I’ve kind of cycled in and out of waves, mostly milder ones with a few that were challenging, over the last year and always seemed to come out a little bit better than I went in. I think there may have been a few times that slight med tweaks set me off but looking back now it seems the common denominator is always stress. 
 

I was very fortunate to be functioning rather well around the birth of my second child and managed to have some decent times shortly thereafter where i for the most part felt the emotions and happiness of it all, maybe not to the extent I would have had I not been in withdrawal, but nonetheless I was very grateful to have been feeling relatively ok during that time. The initial stress off covid was rough but in the end, I think the world being locked down for a bit was actually good for my healing, as not much was expected of me outside of my normal work schedule.
 

since then as you’d expect the stress began to mount. The juggling two kids and the oldest going back to school and the world slowly opening back up from covid. 
 

I went into a decent wave as my son went back to school in early August bc it added a little more responsibility on my plate. That wave seemed to linger through the whole month with a decent day or two sprinkled in here and there. At the end of August we looked like we were going to get hit with two hurricanes back to back and I spent several days making sure we had all the supplies needed with a newborn in the house etcc. We ended up getting lucky with that. Then I have had an unfinished patio cover I decided to go ahead and finish which was dumb and added more stress. So beginning of September I had a pretty nasty argument with my wife and it seemed to set me off bad. That night I startled falling asleep and had several nights thereafter I woke up and couldn’t go back to sleep for several hours. Since then I’ve been trying to right the ship, I’m sleeping 6-7 hours but waking right at daylight despite the use of a sleep mask, prior to this wave I was sleeping like a rock until my alarm. Hasn’t been much good the past 3 weeks or so, all the while the days are inching closer to my wife and I going back to work (more stress). A few weeks ago I could rationalize with myself pretty well when I felt my mind going negative, but I’ve lost that at times the past few weeks. Got kind of lost in the abyss of SA trying to find reassurance and looking in the wrong places a few times, I’m sure that hasn’t helped.

 

i haven’t made any adjustments to my doses of any med since the end of May. In the middle of August I got almost all the way through a shrimp scampi dinner before I discovered it had white wine sauce as an ingredient (I usually check labels on everything...dumb). I didn’t seem to notice anything negative from that. Other than that and the increased stress, nothing else has changed.

 

aug 19th was one year anniversary of my latest CT (Lexapro) and today makes 13 months. Today’s isn’t as bad as some days the past few weeks. I get some glimpses of me in the afternoon at times. I hope I can find a way to deal with the stresses better in the coming months. I feel if I can somehow navigate this period of my life while obviously still not very stable, it should only get easier from there (hopefully).

 

i don’t guess I’m looking for any advice, not much to do at present. I just wanted to give you guys an update on how things are going with me, and sort of vent a little and maybe get a little positivity and encouragement.

 

 Hope you are all well and congrats again Frogie!!

 

JMizz

[Altostrata]

Hi, Jmizz. It sounds like your sleep has been suffering? Have you been getting less sleep with the new baby? That alone can cause resurgence of symptoms.

 

What can you do to improve your sleep?

 

Where are you with your taper, what's your drug schedule?

[Jmizz]

@Altostrata

 

My sleep has actually been ok and really good at times. My wife has handled all of the night feedings, which has been awesome. My sleep was actually still really good even as I felt like stress put me into a wave beginning of August. The sleep issues began after the argument with my wife in early september. The next couple days my exaggerated stress response was terrible in the mornings, I mean awful, and a couple of those days in lasted most of the day and I felt flu like and was actually worried I had corona for a day or two. A couple nights in this stretch the baby woke me up and even though my wife went and fed him, I couldn’t go back to sleep for several hours and was very aware of every little noise in the house. I’d fall asleep fine though every night.  It’s been ages since that’s happened at night. I’m sleeping all night again but it just feels lighter and the cortisol spikes are back in the mornings, but not as bad as it was at the very beginning. 
 

i am however worried about how sleep will be effected when I go back to work. I try everything in my power to stay at the stations that aren’t as busy and sleep most nights but I cant do that all the time. Ugh, I’m so stressed!

 

i believe it to be stress related more than anything. But you don’t think the white wine sauce messed me up, do you? That would be more of an immediate reaction or delayed?

 

It feels exactly like the type of wave I had that led me back to meds 13 months after quitting Zoloft CT in December 2017. Stress and sleep were probably to blame for that one as well. I had 3 jobs at the time and was at a very busy station with night callouts.
 

my schedule is:

 

8am - 11.5mg of lamotrigene water mix

2pm- 5mg of lamotrigene water mix

8pm- 20.5mg of lamotrigene water mix

9:30pm- 50mg of trazodone and 5mg of melatonin

 

 

 

[Altostrata]

I doubt the white wine sauce did much of anything.

 

How are you doing with the divided lamotrigine doses?

[Jmizz]

@Altostrata

 

we’ve always talked about how I was on too much lamotrigene before I found you guys. I wish I didn’t have to take 3 doses a day but it was probably necessary to alleviate some of the adverse effects. It definitely seemed to improve things adding the midday dose but I had a lot going on then, I had just stopped my periodic use of ativan etcc and I think I remember drinking a beer on Christmas and you explaining to me that was a bad idea. I would love to get to a stable period and see what shaving some off the midday dose would do and if maybe I could eliminate it at some point.
 

As far as the doses go...they don’t really seem to effect me much when things are stable and low stress and I don’t have a lot going on. Whenever I get shook up by something though, I’ll go through a period where the medicine makes me jumpy and gives me anxiety and after a few days it calms back down usually. Sometimes it would be the morning dose, sometimes afternoon dose. I had to get shook pretty bad for the evening dose to get jumpy, but it happened once or twice. Too much stimulation, the sun and heat, and arguments etcc are some examples of times I felt shook up. The sun and heat gave me a lot of problems this summer before I talked to you guys and figured it out....despite my best efforts to stay out of it, sometimes I had no choice. I’m thrilled it’s finally starting to look like some cooler weather is coming in bc a lot of my coping involves being outdoors, this summer was very rough at times being inside.

 

with this wave though, I will say, there were a few mornings I woke up horrible racing thoughts and felt like the morning dose provided some relief. Throughout most of this process I’ve always felt like the medicine was working against me and I was just trying to manage it and heal around it, but it sure seemed a few times these last few weeks to relieve me at least somewhat of my racing thoughts.

 

this just felt like a really bad cold turkey wave, probably set of by compounding stress and not treating myself as gently as I should at times. Today wasn’t that bad overall, so maybe I’m working my way out of it. 🤞🏻

[Frogie]

Hi!

Thank you for the “well wishes”. That was very thoughtful of you.

 

I’m glad you were able to enjoy some of the summer with the new bundle of joy and your other son. 
 

Really sorry to hear that your are in a wave and I hope you feel better very, very soon!

 

Take care,

 Frogie xx

[Altostrata]

It does sound like your nervous system got shook up, and it's settling down now appropriately.

 

Hang in there, looks like you went through a rough patch.

[Jmizz]

@Altostrata

 

thank you for the reassurance. The last several days have been markedly better. I think a few good nights of steady sleep and I’ll be back on track. 
 

I just found out I got more time off work for another month, so good news there.

[Altostrata]

This may be a touchy subject -- can you ask your wife to work out a way to diffuse disagreements before they reach a triggering stage for you? Perhaps you can agree on a mutual cool-down signal?