Emma7855: request for help with Lamictal withdrawal symptoms

[Emma7855]

Hi all,

 

First off, I'd like to say how much I appreciate this forum -- reading everyone's posts had made me feel a little less alone in dealing with this mess. So from the bottom of my heart, thank you to all of you.

 

I am currently experiencing what I now have deduced is protracted withdrawal syndrome from Lamictal, and I am at my wits' end trying to figure out how to solve this. The emotional and mental pain is unbearable; I am terrified I'll never recover, as I'm sure you can all understand. I have no idea what steps to take next, so I thought I would turn to this community for help.

 

My story (apologies for the wall of text!):

• I started taking Lamictal in 2015 and quickly got up to 150 mg. I experienced few side effects, and I took it for years without issue. 
• In February of this year, I started having problems with recalling words and expressions (aphasia); I also tended to lose track of my thoughts and in general had a hard time communicating. At the time I thought these symptoms were due to the Lamictal, since I know they are listed as possible side effects. However, in retrospect they must have been due to the Klonopin that I was taking for anxiety. I didn't connect the two together, though, since I was only taking the Klonopin as needed (maybe 3 times per week), and only ever a quarter of a 0.25 mg pill at a time (smallest possible dose). 
• In March, I decided to stop taking birth control pills, since the hormones were turning my curly hair straight. 
• I decided to taper off of the Lamictal in early April. I went down 25 mg every 3 weeks.
• In May I realized that the aphasia and other symptoms were most likely caused by the Klonopin, so I stopped taking it.
• As I went through the Lamictal tapering process, my anxiety skyrocketed -- I was waking up in a cold sweat every morning, experiencing multiple panic attacks every day, etc. I never realized this was a withdrawal symptom and just assumed it was due to either a) general stress from work/life or b) mood swings from my hormone changes from stopping the birth control. On top of that, once I got down to 50 mg in July, I started noticing some brain fog and issues with my memory and concentration. I assumed theses were side effect of Lamictal, and it only reinforced my desire to completely go off. I (stupidly) decided to just spend 2 weeks at 50 mg, 1 week at 25 mg, and then go completely off.
• I got down to 0 mg in mid-July. At that point, I knew I had made a grave mistake -- the brain fog was debilitating; I couldn't think straight, and my previously fantastic memory was reduced to that of a gold fish. I was also struggling to deal with the anxiety, which was at an all-time high. I decided to go back up to 25 mg after only 3 days of being off. Going back up did not help, but I was too scared to make additional changes.
• In mid-August, approximately a month after reinstating, I had some champagne with a friend. The next day, I noticed that the anxiety was gone, but that other symptoms had taken its place: tinnitus, photophobia (light sensitivity), and palinopsia (persistent afterimages). I freaked out, and that night I decided to increase the Lamictal to 50 mg. 
• A few days after increasing to 50 mg, I noticed more symptoms: depersonalization/derealization (DP/DR) and TMJ. In early September, after waiting 2 weeks, I decided to go back down to 37.5 mg in hopes of reducing these symptoms. The TMJ improved but the DP/DR did not.
   

I've now been on 37.5 mg of Lamictal for the past 6 weeks, and none of the symptoms have eased up. I currently experience the following on a daily basis: aphasia and difficulties expressing myself (never improved after going off the Klonopin), , difficulties with executive functioning (making decisions, organizing, planning, taking in information, etc.), general confusion/disorientation, DP/DR, tinnitus, photophobia, palinopsia, insomnia, and severe depression / suicidal ideations. I'm at a loss for how to proceed -- should I try increasing the Lamictal again, assuming my issues are from withdrawing too quickly? Decrease it, assuming they're from reinstating? Wait some more at this current dose? Try something else? I've seen multiple psychiatrists and neurologists to help me figure this out; one suggested Cymbalta to address the depression and brain fog (apparently at higher dose it has positive cognitive effects), and another suggested Galantamine to help with the deficits in executive functioning. My fear is that these medications will exacerbate all of my other symptoms.

 

What do you all think?

 

Thank you so much for reading my post and for helping me through this. 

 

Emma 

 

 

 

[Altostrata]

Welcome, Emma.

 

It sounds like you quit Klonopin at the same time you were tapering Lamictal?

 

What times of day do you take your drugs, and their dosages?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

[Giulietta]

Hello Emma7855

 

Welcome to SA. Thanks goodness for them. You will find some of the best advice anywhere  on this site and plenty of friends.

 

I'm sorry about your symptoms. I can relate to many of them,  including executive function abilities.

 

I also take Lamotrigine ER (600 mg day) a very high dose (for seizure management) and klonopin 2 mg day - prescribed to me 15 years ago for anxiety.  I advise you not to take cymbalta. I am now dealing with protracted WD from cymbalta (2 CT in late 2018). 🤕 It is a terrible drug and extremely difficult to get off of. I was put on it in 2015. 

 

On 10/20/2019 at 1:34 AM, Emma7855 said:

I currently experience the following on a daily basis: aphasia and difficulties expressing myself (never improved after going off the Klonopin), , difficulties with executive functioning (making decisions, organizing, planning, taking in information, etc.), general confusion/disorientation, DP/DR, tinnitus, photophobia, palinopsia, insomnia, and severe depression / suicidal ideations.

 

I have most of these symptoms, including self-expression, executive function difficulties (to put it mildly) and others you did not mention. I believe some of this is drug related.

 

Insomnia and tinnitus have generally abated since discontinuing the cymbalta.  Other cognitive abiliities are gradually improving - including short-term memory. Both lamotrigine and klonopin affect sleep terribly. Anxiety has been brutal but is abating since WD.

 

You will get better. And you are in the right place.

 

Kind regards

 

Giulietta 

 

 

 

[Emma7855]

Thanks, @Altostrata. I just added the information to my signature.

 

Yes, that's right -- I started tapering off Lamictal in April, and I quit Klonopin in May. I discontinued, and then reinstated, Lamictal in July.

 

I currently take 37.5 mg Lamictal at night, along with a probiotic and melatonin. Do you have any insights as to whether I should continue taking the current dose of Lamictal or try tapering again? 

 

Thank you so much.

[Emma7855]

Hi @Guilietta -- Thanks so much for your kind post. I'm grateful that someone else can relate and that I'm not the only one going through this (though of course I wish that neither one of us was)!

 

A few questions for you: How long did it take for the insomnia and tinnitus to subside after discontinuing Cymbalta? Was this after you reinstated it and then tapered again? And why did you decide to reinstate in the first place? How did you know when you were ready to start tapering again? Other than the self-expression and executive functions, what symptoms did you develop, and how long did it take for them to abate? 

 

I'm having a really hard time deciding whether I should try tapering off the Lamictal again or wait some more. I'm concerned that if I taper again then my symptoms will get worse; on the other hand, the DP/DR, tinnitus, and photophobia only appeared after I reinstated, so I'm guessing they won't go away until after I fully taper. I feel so lost and confused.

 

Thanks again.

 

Emma

[Shep]

10 hours ago, Emma7855 said:

Yes, that's right -- I started tapering off Lamictal in April, and I quit Klonopin in May.

 

Please add your Klonopin discontinuation date to your signature. You have the start date but not the end date. A direct link to your signature is here:

 

Account Settings - Create or Update Your Signature

 

10 hours ago, Emma7855 said:

I currently take 37.5 mg Lamictal at night, along with a probiotic and melatonin.

 

How much melatonin are you taking? A lot of people come into the forum on much higher doses than is needed, especially with a destabilized nervous system. Having a hyper-sensitive nervous systems can create paradoxical reactions. Please see:

 

Melatonin for Sleep

 

Are you taking any other supplements? We don't recommend a lot of supplements, as many members report their nervous systems are simply too fragile to handle them. However, magnesium and fish oil tend to be calming to the nervous system and many people report they do help. Please only add in one supplement at a time and at a small dose. For more, please see:

 

 King of supplements: Omega-3 fatty acids (fish oil)

 

Magnesium, nature's calcium channel blocker

 

For information on sleep:

 

Tips to help sleep: so many of us have that awful withdrawal insomnia

 

 

Edited October 23, 2019 by Shep
fixed link

[Giulietta]

11 hours ago, Emma7855 said:

I'm grateful that someone else can relate and that I'm not the only one going through this (though of course I wish that neither one of us was)!

 Hello @Emma7855

 

Where to do I begin.... ?

 

This is a wall of text - I apologize - and moreinfo than you want probably. My typing is not very good today - so plenty of typos to get this done in less than 1.5 hours.

 

First - I am glad to know (even though we are not alone) - that you can relate to Executive Function and self-expression issues. The extraordinary amount of time, questions I have had to reask because I don't undertsand the information in theway it is presented to me - it is embarrassing. Then there is the trouble to assimilate, make a decision,  weigh the pros and cons, sequencing - the anxiety or what if I am making a bad decision, etc. And I feel terrible about it all - the mods have a lot of people who need them. That being said - it's nice tohae someone who can relate. I do hope my EF and short term memory will improve after cymbalta is gone, the gaba and lamo may be reduced and clonazepam goes away.

 

I am having truble typing today - so please pardon all the typos. Iwil never get through this if I keep correcting them all. Left hand motor skills / fingers are terrible today.

 

Cymbalta:

I was on cymbalta since 2015. Since it wasn't helping me i was movedup to 90 mg. I resisted going higher.  I tapered down nto 20 mg about 2017? And then after the 4th MD told me that 20 mg wasn't doing anything and I could just quit - I did last summer. I had been feeling fine. Within a few days panic, agoraphobia, insomnia, tinnitus,etc. started. I finally figured out that this was cymbalta so reinstated about 2-2.5 months later. Side effects commenced immediately - constipation, flank pain, belly pain, etc. I ignored the latter for weeks.  Insomnia, anxiety - so agitated.  Tremors.

 

I reinstated to resolve the sysmptoms as soon as I figured it out. I could have reinstated a partial dose to feel better - which there is more on this site about. Mods can refer you.

 

AFter this I  wanted off ASAP.  I had no knowledge about a   timeline for CT, reinstate, stabilize then taper.  I expressed to new MD that I didn't want to cross-over to anythign but I wanted off.

 

11 hours ago, Emma7855 said:

How long did it take for the insomnia and tinnitus to subside after discontinuing Cymbalta? Was this after you reinstated it and then tapered again? And why did you decide to reinstate in the first place? How did you know when you were ready to start tapering again?

 

The insomnia and tinnitis applies mostly tothe Dec 2018 CT. Terrible tinnitus for 6 months. It would very often start at 3 or 4 p.m.. It subsided significantly in June and generally worse at night. Insomnia has abated as well. If I am careful - no computer after 7, relaxing, positive thoughts, etc. I only wake up once. I still have morning cortisol spikes around 4 and haverestless sleep for thenext 2 hours (when I awaken). Insomnia I undestand is that last symptoms to go. 

 

I discourage you from cymbalta.

 

11 hours ago, Emma7855 said:

Other than the self-expression and executive functions, what symptoms did you develop, and how long did it take for them to abate? 

 

They are still with me - but onething that may be improving is short-term memory over the past 2 months.They were not helped by cymbalta. I no longer have to double (sometimes triple!) check that the door is locked, that I took my medicine (even though the case may be right next to me), doI have the car keys, etc.  The EF (and memory) may be the esult of clonazepam. I don't know about the comprehensionissues. I also suffer from aphasia. I was once a very articulate and effective communicator. Both of those I find devastating. I have been on anti-convulsants for about 40 years. People with epilepsy tend to have memory issues. That being said - my long term memory is excellent - for memories formed when I was much younger. I wish I knew why. Even taking classes - and whenwe work to embed something - I still have to refer to things. It is frustrating, I know. I find post its of infinite value.

 

when did your EF issues begin? And comprehension andmemory?

 

When did you stop clonazepam? Over how long a period did you taper? How do you know thatt he WD are not due to that? WD can start months after ceasing a drug - if I recall correctly.

 

About lamotrigine:

 

I understand lamotrigine can cause insomnia in some people. I was on it for a year before startingcymbalta and didn't experience insomnia with it.

 

I take it with dinner on a full stomach. I know people who takeitin the morning because it causes them insomnia.

 

11 hours ago, Emma7855 said:

I'm having a really hard time deciding whether I should try tapering off the Lamictal again or wait some more.

 

When did you start the lamotrigine taper? And by what percent?    I tried to taper lamotrigine down from 600 (to 550) - this was done over 3 days!  So - I started to exprience auras and I got cold feet. Since being on SA - I learned that lamotrigine (and gabapentin) can be real bears to taper!!! So - my thought about reducign lamotrigine (for me) is to go down by 2.5% every 10 days at least. If I want to succeed - and with my anxiety around lamotrigine - I need to be veryconservative.

 

I have found that WD symptoms may be serial - and replace each other. When tinnitis abated in a significant way - I had DP/DR kick in.

 

 

 

11 hours ago, Emma7855 said:

on the other hand, the DP/DR, tinnitus, and photophobia only appeared after I reinstated,

 

I wish I could give you some advice on this. 

 

The nervous system changes very slowly. Although 10% decrease per month - from the prevoius month's dosage is the recommended rate - some people need to go slower. It may be that the frequent changes contributed to your side effects.

 

I am less confused now that I am here. 

 

I hope this has been a bit helpful.

 

Giuilietta

 

[Altostrata]

On 10/19/2019 at 10:34 PM, Emma7855 said:

In May I realized that the aphasia and other symptoms were most likely caused by the Klonopin, so I stopped taking it.

 

As I went through the Lamictal tapering process, my anxiety skyrocketed -- I was waking up in a cold sweat every morning, experiencing multiple panic attacks every day, etc. I never realized this was a withdrawal symptom....

 

Emma, it is possible you have benzo withdrawal syndrome rather than a Lamictal problem. How did you go off Klonopin? In the two weeks prior to going off, how often were you taking it? @Shep will consult on the benzo issue.

 

Currently, what is your sleep pattern? How has it changed since you've been taking 37.5mg Lamictal? What time of day do you take it? How do you feel in the hours afterward?

 

 

[Emma7855]

Hi @Shep,

 

Quote

Please add your Klonopin discontinuation date to your signature. You have the start date but not the end date.

 

Sorry about that! I just updated my signature.

 

Quote

How much melatonin are you taking? A lot of people come into the forum on much higher doses than is needed, especially with a destabilized nervous system. Having a hyper-sensitive nervous systems can create paradoxical reactions.

 

I've been taking 3mg, starting in early October. I've found that it's a helped a little with my sleep -- I'm usually able to get 4-6 hours now, whereas before I was averaging 2-3. Granted, there are still days when my insomnia keeps me up all night.

 

Quote

Are you taking any other supplements? We don't recommend a lot of supplements, as many members report their nervous systems are simply too fragile to handle them. However, magnesium and fish oil tend to be calming to the nervous system and many people report they do help. Please only add in one supplement at a time and at a small dose.

 

I'm not taking anything other than the melatonin and probiotic. I've ordered magnesium, fish oil, and NAC and will (cautiously) try introducing one at a time to see if they make any difference. 

 

Do you think (as @Altostrata mentioned) that my withdrawal has been caused by Klonopin rather than Lamictal? My worst symptom by far is the DP/DR, which appeared only after I updosed on the Lamictal  from 25mg to 50mg in mid-August (after discontinuing in mid-July). However, I developed aphasia in February way before I even attempted to tapering off the Lamictal; in retrospect I gather that this must have been due to the Klonopin. To add an extra layer of complexity, I tapered off Prozac in May of 2018 and started experiencing anxiety (waking up in a panic every morning) shortly afterwards, and this lasted for over a year. At the time I had no idea this was a withdrawal symptom, unfortunately.

 

Thanks for your help; I really appreciate it.

 

Emma

 

[Emma7855]

Hi @Altostrata,

 

Quote

Emma, it is possible you have benzo withdrawal syndrome rather than a Lamictal problem. How did you go off Klonopin? In the two weeks prior to going off, how often were you taking it? @Shep will consult on the benzo issue.

 

That's certainly possible; I hadn't even considered that, since the majority of my symptoms coincided time-wise with the Lamictal tapering (except for the aphasia, which I developed in February -- a few months before starting this whole tapering process). But my symptoms line up perfectly with withdrawal from benzos rather than from Lamictal. I just discontinued the Klonopin rather than taper it since I was taking so little (a quarter to a half of a 0.25mg pill, which is the smallest dose). I think in the two weeks prior I was taking it almost everyday, but it's hard to say (my memory of that time is hazy, unfortunately -- yet another withdrawal symptom!). Is there anything I can do about this? Maybe re-introduce an insignificant amount of it, say 0.01mg? As for the Lamictal, I'm at a complete loss for how to address it (updose even more? wait longer?). It seems like my symptoms have been constant, neither improving nor worsening, since they each appeared.  
 

Quote

 

Currently, what is your sleep pattern? How has it changed since you've been taking 37.5mg Lamictal? What time of day do you take it? How do you feel in the hours afterward?

 

 

My sleep has been all over the place -- sometimes I can get 4-6 hours, other times only 2-3. I think it's gotten better since starting the melatonin (3mg) in early October, but it's hard to say (I think I still need a few weeks to know for sure). I don't think it's changed since going down to 37.5mg -- for that matter I don't think anything's changed. The TMJ is still there, along with the DP/DR, both of which I developed when increasing from 25mg to 50mg. I take it at night, and I feel no different afterwards than I do beforehand. FWIW I always feel worst in the morning (I tend to wake up with my heart racing), and then my mood usually improves over the course of the day. 

 

Thanks so much,

 

Emma

[Emma7855]

Hi @Guilietta,

 

Thanks so much for sharing your story  I can relate to so much that you wrote. And no problem at all about the the typos!! I completely understand -- no need to apologize.

 

Quote

First - I am glad to know (even though we are not alone) - that you can relate to Executive Function and self-expression issues. The extraordinary amount of time, questions I have had to reask because I don't undertsand the information in theway it is presented to me - it is embarrassing. Then there is the trouble to assimilate, make a decision,  weigh the pros and cons, sequencing - the anxiety or what if I am making a bad decision, etc. And I feel terrible about it all - the mods have a lot of people who need them. That being said - it's nice tohae someone who can relate. I do hope my EF and short term memory will improve after cymbalta is gone, the gaba and lamo may be reduced and clonazepam goes away.

 

Ugh, this is SO TRUE. It's never ending. Even basic things like doing laundry, grocery shopping, or straightening up have become insurmountable. Like, having to figure out how to break down the task into manageable pieces, sequencing them, executing them, figuring out the timing, making decisions etc -- each one of those aspects is so energy-consuming and tiring. Have you figured out any shortcuts or ways to make the process easier? Every single time that this happens I break down and cry, and that's not exactly something that I can (or want!) to have happen for the next few years, assuming it takes that long for this to all go away. And yeah, the self-expression issues are terrible. I feel so dumb at work now. I can barely talk so I'd rather just stay quiet and not participate in conversations. I eat lunch by myself now, I stay in my office -- I've even stopped socializing with friends...  Do you go about handling it? I sincerely hope that everything improves for you once you're able to taper off those meds. 

 

Quote

Cymbalta:

I was on cymbalta since 2015. Since it wasn't helping me i was movedup to 90 mg. I resisted going higher.  I tapered down nto 20 mg about 2017? And then after the 4th MD told me that 20 mg wasn't doing anything and I could just quit - I did last summer. I had been feeling fine. Within a few days panic, agoraphobia, insomnia, tinnitus,etc. started. I finally figured out that this was cymbalta so reinstated about 2-2.5 months later. Side effects commenced immediately - constipation, flank pain, belly pain, etc. I ignored the latter for weeks.  Insomnia, anxiety - so agitated.  Tremors.

 

I reinstated to resolve the sysmptoms as soon as I figured it out. I could have reinstated a partial dose to feel better - which there is more on this site about. Mods can refer you.

 

AFter this I  wanted off ASAP.  I had no knowledge about a   timeline for CT, reinstate, stabilize then taper.  I expressed to new MD that I didn't want to cross-over to anythign but I wanted off.

 

Oh I totally get this. That's exactly what happened to me with the Lamictal. Who knew you were supposed to reinstate a partial dose? No one ever told me that, and I saw 4 different psychiatrists... 

 

Quote

The insomnia and tinnitis applies mostly tothe Dec 2018 CT. Terrible tinnitus for 6 months. It would very often start at 3 or 4 p.m.. It subsided significantly in June and generally worse at night. Insomnia has abated as well. If I am careful - no computer after 7, relaxing, positive thoughts, etc. I only wake up once. I still have morning cortisol spikes around 4 and haverestless sleep for thenext 2 hours (when I awaken). Insomnia I undestand is that last symptoms to go. 

 

That's interesting that your tinnitus would only appear in the afternoons. What happened in June for it to significantly improve? Mine's constant, but sometimes (like if I'm anxious, or sleep-deprived, or overly emotional) it's worse than other times (if I'm in a good mood and relaxed). The fact that yours went away after 6 months though gives me hope! 

 

Quote

when did your EF issues begin? And comprehension andmemory?

 

When did you stop clonazepam? Over how long a period did you taper? How do you know thatt he WD are not due to that? WD can start months after ceasing a drug - if I recall correctly.

 

It gets really complicated here  The comprehension and memory issues started when I was almost done tapering Lamictal in July. Of course at the time I didn't realize they were related, so I continued tapering; once I got completely off the issues became so severe that I decided to reinstate 25mg. Everything pretty much stayed the same for a few weeks, until one day when I had some champagne with a friend -- the next day is when I developed the tinnitus and photophobia. That night I decided to increase the dose again to 50mg. Around this time is also when I got the DP/DR and EF issues, so I'm not sure if the champagne caused it (I guess that triggered more withdrawal symptoms) or the higher dose.

 

I stopped Klonopin in May, and I didn't taper at all. I was taking such a small dose (a quarter to a half of a 0.25mg pill) that it never occurred to me that tapering should be even considered. In retrospect, I think the Klonopin was causing the aphasia (maybe I was already in withdrawal because I wasn't taking it on a regular basis?) -- I developed it in February, a few months before I started tapering off the Lamictal -- but at the time I blamed it on the Lamictal. At this point, though I have no idea if the other symptoms are caused by the Lamictal or Klonopin. And even if I were to know, what would I be able to do about it now? Maybe reinstate the tiniest amount of Klonopin? Try going off of the Lamictal again? Or add something else? Supplements? 

 

Quote

When did you start the lamotrigine taper? And by what percent?    I tried to taper lamotrigine down from 600 (to 550) - this was done over 3 days!  So - I started to exprience auras and I got cold feet. Since being on SA - I learned that lamotrigine (and gabapentin) can be real bears to taper!!! So - my thought about reducign lamotrigine (for me) is to go down by 2.5% every 10 days at least. If I want to succeed - and with my anxiety around lamotrigine - I need to be veryconservative.

 

I originally was tapering the Lamictal by 25mg every 3 weeks, but once I got towards the end I sped the process up, since I noticed withdrawal symptoms (the comprehension and memory issues) -- at the time I incorrectly assumed they were side effects. I guess the question is how much longer should I give myself on the current dose of Lamictal? In your case, how did you decide you were ready to start tapering Cymbalta again? 

 

Quote

I have found that WD symptoms may be serial - and replace each other. When tinnitis abated in a significant way - I had DP/DR kick in.

 

Oh wow, I had no idea that was possible. I think DP/DR is the worst one for me -- the fact that I can no longer recognize my family, my boyfriend, my apartment, my job... my memories... even myself in the mirror... is absolutely terrifying. I keep crying about it. My mom's visiting me right now in an attempt to help me get through this, and I can't even remember how I'm supposed to interact with her. My own mother  How were you able to get through that and cope? I'm have a really, really hard time. 

 

Thanks for all of your help, Guilietta. Looking forward to hearing back from you.

 

Emma

[Giulietta]

Hello Emma,

 

Thank you for the descriptive email. Glad you are visiting with your mother. It sounds like you are very close to her - and mothers are such a source of strength, love and comfort.

 

II will reply later to your other comments.

 

8 hours ago, Emma7855 said:

Maybe reinstate the tiniest amount of Klonopin? Try going off of the Lamictal again? Or add something else? Supplements? 

 

Please don't make any changes to your meds without communicating with a moderator. One thing I have learned is that someof this drugs sare activating in nature (lamictal for one) and sedating (klonopin for one). That may impact their recommendations about any changes to your dosages.

 

It's really hard to cope. Anxiety and feelings of depression exacerbate EF and memory issues. I feel like an idiot even though I'm cognitively I'm in the 'bright' range. I don't know what to open my mouth around people. I'm not sure I even understood everything. I may latch onto details becauees I have trouble grasping the big picture.

 

I have a very good long term memory - and also when I am passionate about something and commit knowledge to it and become some kid of subject matter expert on the subject - and then when I am with other people who appreciate this - the community - I fit in and feel better about myself.

Well - could get carried away on this. Because I am verbal and articulate  I fool a lot of people (unwittingly). They think I don't have these challenges - and I am trying to hide them and hope they don't don't notice.

 

Well - we can swap stories about coping and communicating with iothers.

 

In the tmeantime you hang int here.  Enjoy the time with our mother.

 

Giuilietta

 

[Altostrata]

Emma, if I were you, I'd gradually move the Lamictal earlier by an hour each day until you're taking it at noon or in the morning, it may be interfering with your sleep.

 

Why did you increase from 25mg back in August?

 

@Shep can you consult on possible benzo withdrawal syndrome?

[Shep]

20 hours ago, Emma7855 said:

Do you think (as @Altostrata mentioned) that my withdrawal has been caused by Klonopin rather than Lamictal? My worst symptom by far is the DP/DR, which appeared only after I updosed on the Lamictal  from 25mg to 50mg in mid-August (after discontinuing in mid-July).

 

Yes, I suspect Klonopin, too. It's possible coming off Klonopon destabilized your nervous system, causing it to hyper-react when you updosed the Lamictal. 

 

20 hours ago, Emma7855 said:

Is there anything I can do about this? Maybe re-introduce an insignificant amount of it, say 0.01mg?

 

Unfortunately, benzo reinstatements don't usually work if you've been off it for more than a month, and you've been off since May.

 

So it would be very risky to reinstate it. 

 

20 hours ago, Emma7855 said:

I think it's gotten better since starting the melatonin (3mg) in early October, but it's hard to say (I think I still need a few weeks to know for sure).

 

It's great you're seeing improvements with the melatonin. It's possible that using less may help even more. Melatonin is something that people tend to do better with at a lower dose, especially with a destabilized nervous system. Please see:

 

Melatonin for sleep

 

Please have a careful read of that first post, as it will guide you into the best dose to use during withdrawal. If you do decide to reduce your dose, please do so gradually. 

 

1 hour ago, Altostrata said:

Emma, if I were you, I'd gradually move the Lamictal earlier by an hour each day until you're taking it at noon or in the morning, it may be interfering with your sleep.

 

Emma, this may also help if you're getting a paradoxical reaction by taking both the Lamictal and the melatonin at the same time at night. The more you dampen down the nervous system with sedating drugs and supplements, the more it fights to stay alert. This creates a paradoxical reaction. 

 

Please only make one change at a time. If you decide to reduce the melatonin, you'll want to do that either before or after making the Lamictal timing change that Alto mentions. Only one change at a time. Please see:

 

The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

[Giulietta]

On 10/26/2019 at 12:10 AM, Emma7855 said:

ven basic things like doing laundry, grocery shopping, or straightening up have become insurmountable. Like, having to figure out how to break down the task into manageable pieces, sequencing them, executing them, figuring out the timing, making decisions etc -- each one of those aspects is so energy-consuming and tiring.

 

Hello Emma,

 

I hope you are sleeping better.  It is 8 pm and I should not be on - but want to see how you are and provide more info (and commiserate with EF!).

 

Yes. These things are overwhelming and so time-consuming. Just these basic things are draining and waht we want to do - get shoved aside because we are without mental energy (or sometimes  physical too!).  Here are a few things that would help me if I did them:

 

1. Work backwards and plan when you have a goal and a schedule. For example, when I have an appointment or some obligation - everything must be  considered. There is no just getting in the car and going, grab purse, keys and lock the door. If I need to be at the MD's at 8.30  - I need to count on 2.5 hours for travel door to door (yes it's that long). This means leaving the house at 6.30 (better 6.15). Since I'll need 45 mins to dress, breakfast etc. (which I've also had to figure out how much time I need!), I get up by 5.30.  I have a post it on my dresser with the the time to leave and time of the appointment. The night before I make sure I have things to bring to the MD including questions. And of course lay out what I will wear, carry, etc. Oh, and print out a map unless I've been there before. GPS don't always work. 

 

If I don't know - I ask someone. Even if it's' hard becuse I feel like everyone else knows. I'm ok if they tell me I have no common sense. I have plenty of company!

 

On 10/26/2019 at 12:10 AM, Emma7855 said:

how to break down the task into manageable pieces,

 

I often ask for help if this is the first time. I may first think about what to do, write it down - and ask someone who may know. I write down everything. I'm guessing you do as well.

 

On 10/26/2019 at 12:10 AM, Emma7855 said:

figuring out the timing,

 

At work - if there is a task that needs repeating - I have to do one and multiply that time by the number of things -  before telling my manager it will take me 2 hours to do x things - when it will take me 4.

 

For somethings at home - I multiply my best guess by 3.    Because I work slow(er) - just to complete something (a draft of something) - without editing it - I can't actually say how long it will take. I think I will get something down 'this afternoon' but it isn't done until the day after tomorrow. And that's mostly all I've done too. I am relieved and feel I've  accomlished something. I try not be disappointed that I didn't do more.

 

On 10/26/2019 at 12:10 AM, Emma7855 said:

That's interesting that your tinnitus would only appear in the afternoons.

 

My tinnitis has changed. It is worse when I am tired and under stress. This is normal and there is a resarcger who did a very good talk about tinnitis on TEDx.  His last name begins with R. Obviously can't remember. I believe he's from Germany and now lives in the US.

 

Hope things are going OK. I am tomorrowmorning going iinto the city - a new location - don't nkow how to get there, how long it will take, what time to get up, what to wewar, what to bring, etc., etc., etc. It's already 8.30 p.m. so I'm stressed out about preparing, relaxing and going to bed. Time for lists and post its and googling directions. 🤣

 

I have more things about EF - pls ping me if I forget to send to you.

 

Giuilietta

 

[Giulietta]

For grocery shopping - I have simplified this by having a list in the computer - and looking at my checklist and the cupbooards and fridge for what I need (or will need in the coming few days). I keep the department (produce or dairly) in a separate cell (it's in a spreadsheet) so I can organize. Check off what you need before you shop.

 

Happy shopping.

[Emma7855]

Hi @Altostrata and @Shep,

 

Thank you so much for your help. I've managed to improve my sleep by cutting out chocolate after 2PM and wearing orange-tinted glasses after 8PM -- I can now get around 7 hours of sleep. I might try decreasing the melatonin (still 3 mg) or taking the Lamictal (still 37.5 mg) earlier in the day, but I'm not as pressed to make those changes as I was when I wrote my original post. 

 

Quote

Why did you increase from 25mg back in August?

 

Reinstating the Lamictal (at 25 mg) after completing the withdrawal didn't seem to help my symptoms (brain fog, concentration issues, etc.). One day, approximately a month after reinstating, I had some champagne with a friend; the next day I woke up with even more symptoms (tinnitus, photophobia, etc.). I freaked out and decided to increase the dose to 50 mg, thinking that would help. I think that's when I got the DP/DR, bruxism, and dizziness, so after waiting two weeks I decreased to 37.5 mg. It's been two months now since this last change and still nothing has improved.

 

Quote

Unfortunately, benzo reinstatements don't usually work if you've been off it for more than a month, and you've been off since May.

 

So it would be very risky to reinstate it. 

 

My psychiatrist doesn't believe that I'm experiencing protracted withdrawal, saying that my symptoms don't make sense to him; instead, he claims I have PTSD from an unrelated event last year. I pushed back and explained that while PTSD could explain the DP/DR, poor memory, and concentration problems, it would still leave unresolved the other problems like tinnitus and photophobia. He then said if it were indeed protracted withdrawal, it would get fixed by reinstating the Klonopin. From what you're saying, this would be a huge no-go. Would reinstating with Valium be any better (I've been reading the Ashton manual)? Is there anything else I can try? Maybe tweaking the Lamictal dosage again? 

 

As for the aphasia, could this be another withdrawal symptom? Or was it a side-effect of Klonopin? I developed it in February/March, before I started tapering off Lamictal. 

 

Thank you again,

 

Emma  

[Emma7855]

Hi @Guilietta,

 

Thank you SO much for your detailed posts -- this is all super informative and helpful. I'm currently trying to lay low, just letting my mom take care of me, doing the bare minimum at work, etc; but when I start having to take care of myself again, I'll definitely incorporate your ideas. 

 

How are you doing this week?

 

Sending you lots of good vibes!!

 

Emma

[Giulietta]

Hello Emma,

 

Sent you a long letter this morning.

 

A few notes from your note to Altostrata and Shep - based on my personal experience wtiht he drugs you are on - which I am taking and have taken for years. My lamotrigine is at a much higher level 600 mg (sorry to say).

 

7 hours ago, Emma7855 said:

taking the Lamictal (still 37.5 mg) earlier in the day, but I'm not as pressed to make those changes as I was when I wrote my original post. 

 

Moving lamotrigine forward may help. I know others whom it has helped. That being said I take mine at night and think it may have been picked because a larger meal and consistent time (I am on ER - 24 hours) would be easier than at breakfast.  This I will followup with moderators on before seeing my MD (gulp next week) - as well as my other meds.

 

On 10/26/2019 at 6:11 PM, Shep said:

Yes, I suspect Klonopin, too. It's possible coming off Klonopon destabilized your nervous system, causing it to hyper-react when you updosed the Lamictal. 

 

This gruesome twosome has an unpleasant effect on your vision - so Shep's comment maks sense. While WD has made vision MUCH worse than the usual blurry vision - opthalmologists (I've seen 5, including 2 at top leading ear/eye institutes) - one at the latter indicated lamotrigine and clonazepam combo.

 

Aphasia is an effect for cymbalta WD - for me - and its severity varies from day to day. Others not quitting clonazepam and lamotrigine also experiece aphasia as a WD symptom.

 

Glad your Mum is helping care for you.

 

Week was mixed. Livin' the dream. 😎

 

Giulietta

[Shep]

On 11/2/2019 at 1:48 AM, Emma7855 said:

Thank you so much for your help. I've managed to improve my sleep by cutting out chocolate after 2PM and wearing orange-tinted glasses after 8PM -- I can now get around 7 hours of sleep. I might try decreasing the melatonin (still 3 mg) or taking the Lamictal (still 37.5 mg) earlier in the day, but I'm not as pressed to make those changes as I was when I wrote my original post. 

 

This is an excellent update, Emma. I'm glad to read your sleep is 7 hours a night.

 

Yes, not making any changes right now sounds like a good plan and a way to build a solid foundation before making any reductions. 

 

On 11/2/2019 at 1:48 AM, Emma7855 said:

My psychiatrist doesn't believe that I'm experiencing protracted withdrawal, saying that my symptoms don't make sense to him; instead, he claims I have PTSD from an unrelated event last year. I pushed back and explained that while PTSD could explain the DP/DR, poor memory, and concentration problems, it would still leave unresolved the other problems like tinnitus and photophobia. He then said if it were indeed protracted withdrawal, it would get fixed by reinstating the Klonopin. From what you're saying, this would be a huge no-go. Would reinstating with Valium be any better (I've been reading the Ashton manual)? Is there anything else I can try? Maybe tweaking the Lamictal dosage again? 

 

Unfortunately, most psychiatrists don't understand withdrawal. Since you've been off Klonopin since May (6 months), reinstating it is very risky. The same is true for adding in a new benzo, such as Valium. The Ashton Manual was written for people already on a benzo and wanting to taper off. So what is in the Ashton Manual isn't really applicable for someone who's this far off a benzo. Please note that repeated exposure to benzos can lead to something called kindling, making each subsequent withdrawal worse.

 

Kindling

 

On 11/2/2019 at 1:48 AM, Emma7855 said:

As for the aphasia, could this be another withdrawal symptom? Or was it a side-effect of Klonopin? I developed it in February/March, before I started tapering off Lamictal. 

 

You may find improvements with the aphasia as you continue to sleep better. I would continue to hold for a few weeks, especially since you're seeing improvements in sleep, and try to build a solid foundation before making any more changes. 

 

Please post your thoughts. 

[Giulietta]

Hi Emma

 

How are you doing.

 

 

Giulietta

 

[Emma7855]

Hi @Guilietta and @Shep,

 

Thanks so much for your thoughtful and kind responses. I'm still having a hard time, unfortunately -- while I'm able to get 6-7 hours of sleep (though my sleep hasn't been a huge issue), the other symptoms keep persisting day in and day out, with no windows whatsoever. The DP/DR is the worst one by far. My mom just visited me for two weeks, and I could barely remember who she was, or how we used to interact, what we used to do together, etc. I'm finding that I've become clueless about all of my relationships, even my SO whom I've been with for 4 years. My work, I can't connect to it or remember how I got to where I am today. My apartment feels foreign to me. Even I seem different; I've lost all of my habits (both good and bad), my ticks, the things that made me "me." I also no longer have a concept of time. My mom just left on Tuesday, but it feels like it's been years since her visit! I feel totally lost, like I'm just floating, not connected to anything, any place, any time. Is this normal DP/DR or is this something else? It feels like I've developed full-fledged dissociation, and I'm absolutely terrified. I really can't deal with the fact that this might take years to go away (if it ever does), and I can't stop crying.

 

Should I still continue with the 37.5 mg Lamictal or make a change? If the former, then how much longer should I give myself? Until the end of the year? It's so hard to tell when the time is right. A few weeks ago, I tried taking 100 mg of N-acetylcysteine (1/6 dose) and felt weirdly agitated and foggy (even more so than usual), so didn't try again. Then last week I tried to take 50 mg of magnesium glycinate (1/4 dose) and again reacted negatively, so gave up. It seems my body is unhappy with anything I do, except for the melatonin 3 mg and probiotic. I'll try taking a fish oil supplement next and see what happens, but I'm not expecting much.

 

Thanks for reading -- I really appreciate it.

 

Emma

[Altostrata]

On 10/25/2019 at 6:34 PM, Emma7855 said:

The TMJ is still there, along with the DP/DR, both of which I developed when increasing from 25mg to 50mg. I take it at night, and I feel no different afterwards than I do beforehand. FWIW I always feel worst in the morning (I tend to wake up with my heart racing), and then my mood usually improves over the course of the day. 

 

It sounds to me you might be getting adverse effects from Lamictal. To test this, can you move taking it an hour earlier each day, until you're taking it at noon?

 

While you make this change, please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. You can post 24 hours of notes at a time in this topic, with a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

[Emma7855]

Thanks @Altostrata. I'll slowly move the Lamictal up to noon (currently taking it at ~9PM) and then let you know which symptoms change, if any. 

[Giulietta]

Hello Emma,

 

7 hours ago, Emma7855 said:

I could barely remember who she was

 

Did your recollection of your relationship with your mother improve over the course of the 2 week visit?  What is the typical duration between visits with friends - and how well you remember your relationship with them?

 

I ask because I   experience this and I don't know if clonazepam may be more to blame since I experienced these symptoms before taking lamotrigine I am pretty sure (I think). I thought these are short term memory issues. I struggle to remember what I know about someone. It  takes things a bit to 'click' with some people if I haven't seen them in a couple of weeks.

 

7 hours ago, Emma7855 said:

My work, I can't connect to it or remember how I got to where I am today. My apartment feels foreign to me. Even I seem different; I've lost all of my habits (both good and bad),

 

Do you mean you don't remember what you have accomplished within a year, quarter, 1/2 year - etc.? I can't recall in detail and may need my memory jogged. Otherwise I rely on documentation. I adduce this to short-term memory.

 

7 hours ago, Emma7855 said:

I also no longer have a concept of time.

 

Same here - a big issue during WD. Days, weeks, months have gone by - and when I realize this I become agitated becauses I see time lost. This may mean I have to set ONE goal a day to accomplish (I need to start with one goal ). I'm so frustrated with this - more than the issues I mention above. There's no recouping lost time.

 

Hope you are doing better.

 

Giuilietta

 

 

[Giulietta]

I wanted to provide you with information about lamotrigine/lamictal discontinatuion recommendations from GSK prescriber information:

 

From section 5.9 (excerpted portion): "Unless safety concerns require a more rapid withdrawal, the dose of LAMICTAL XR should be tapered over a period of at least 2 weeks (approximately 50% reduction per week) [see Dosage and Administration (2.1)]."

 

This is awfully fast.

[Emma7855]

Hi @Guilietta -- No, it never got better after the two weeks  It's like I've lost my ego, everything that makes me who I am. How did I get to where I am today? I have no idea. It's slightly different than short/long-term memory loss because I still remember everything, but the memories don't feel like my own. My life doesn't feel like my own. Sorry it's hard to explain and I'm not doing a great job of clarifying. 

 

How are you doing?

 

Also, LOL about the Lamictal taper. Sigh. If only it were that easy!!

 

Emma

[Giulietta]

Hello @Emma7855

 

I sent the GSK directions to you as another illustration of how moronic (or deliberate) these drug companies are about keeping their patients in a bad state. The hoot about this drug - which was potentially an issue for me - is that the first time I tried the drug (when it was new on themarket) it looked like I could have had the rash! So they had to yank me off it.

 

Sorry about your ongoing symptoms. I'll update you later about my efforts to get XR andhow the visit withmy MD went on this subject later.

 

I also have some EF stuff to copy paste into your page (let me know if you didn't ask for it?) buthave not had time.

 

I am tryng to spend much less time on SA to see if my syptoms improve. I'm not sure whether to post EF stuff on your page or start a thread - no one elsehas asked about EF.

 

Please remind me to post.

 

Hugs,

Giulietta

 

 

 

 

[Emma7855]

Hi @Guilietta -- Yes, please do copy/paste the EF info on my page! I'd love to read it. Hope the visit with your MD goes well -- looking forward to hearing about it. Probably wise to spend less time on SA; I find that if I browse the posts less then I get less anxious about my symptoms, but I also feel lonelier because no one else understands what I'm going through. It's a double-edged sword. 

 

Emma

[Emma7855]

Hi @Altostrata -- It's hard to say for sure, but I suspect that taking the Lamictal at an earlier time (currently at 6PM, moved up from 9PM over the span of a few days) is causing me to wake up earlier and with worse TMJ. Should I push through and continue moving it up? Thanks.

[Emma7855]

Hi all (sorry for the multiple posts!) -- I can't figure out what to do about my diet. I'm not eating too well -- lots of sugar and simple carbs (it's hard to care because of the DP/DR, but I know that's not a good excuse) -- but I'm confused about what to eat instead. A few psychiatrists and neurologists have suggested the MIND diet, another doctor mentioned going vegan, and then people here are talking about GAPS/paleo. I don't seem to have any food allergies (at least not that I can tell), but I'm wondering if eating better would improve my cognitive symptoms.

 

Thanks for your help!

 

Emma

[Altostrata]

Emma, how long have you been taking 37.5mg Lamictal at noon? Has your symptom pattern changed in any other way? How's your sleep?

 

In what form are you taking Lamictal?

 

Please post at least 24 hours of your daily notes in this topic.

[Giulietta]

19 hours ago, Emma7855 said:

Probably wise to spend less time on SA; I find that if I browse the posts less then I get less anxious about my symptoms, but I also feel lonelier because no one else understands what I'm going through. It's a double-edged sword. 

 

Hello Emma,

 

I reduced my time on SA Thursday and yesterday. I would say both days had issues in spite of that throughout the day. Browing posts less frequently seems to alleviate symptoms, yes. I do think it helps if you can find a friend (outside of SA) and/or family member who understands and appreciates what you (and others) are going through.

 

19 hours ago, Emma7855 said:

I can't figure out what to do about my diet. I'm not eating too well -- lots of sugar and simple carbs (it's hard to care because of the DP/DR, but I know that's not a good excuse) -- but I'm confused about what to eat instead.

 

I believe in moderation and common sense. That being said - whole grains, plenty of protein which I believe supports the wake-up or sensitivity of neurotransmitters, veggies & fruits and yes, minimize the refined/carbs. I know that the latter help with the DP/DR -which I am experiencing more of myself - so increased cravings of these.  That however is only my opinion.

 

Sugar and  caffeine are obviously poor choices.

 

To hep reduce these cravings - you can find a few things that aren't so 'bad' like nonni's biscotti and say one a day tops. Peanut butter on triscuits. low fat cheese on triscuits.

 

Thakms for the reminder on EF.

 

Will send you a quick kPM now.

 

Giuilietta

[Giulietta]

2 hours ago, Guilietta said:

Sugar and  caffeine are obviously poor choices.

 

 

Hi again.

 

And note that this is just my experience ...

 

 

Availing myself of sugar and caffeine (both of which may be are habit forming as we know!) was suggested to me bysomeone close to me who watched me suffer with WD. Person  has seen others suffer with WD. Person believes that  using sugar and caffeine as ways to help reduce drug WD - and then get off sugar/caffeine -  is better than drug WD. I have had days when I am craving sugar and need to rein that in. 

 

I suggest looking at the SA dietary pages on carbs/sugars. I think they have something posted on that.

 

I also craved carbs/sugar and gained weight. Last year I deliberately lose 25# pounds and it took some doing.

 

G.

 

[Gridley]

23 hours ago, Emma7855 said:

I can't figure out what to do about my diet.

 

Erma,

 

Shep, one of our administrators, posted the following about diet.  You might find it helpful.

 

"How is your diet? What kinds of foods are you eating? Many of us with nervous systems this compromised find that certain foods are very stimulating and cause severe anxiety and panic. These can include:

 

• alcohol
• sugar
• caffeine
• fruit juices (even unsweetened juices contain a lot of natural sugar, which can be difficult during withdrawal)
• artificial sweeteners
• processed foods / junk food / fast food
• MSG
• foods high in histamine - see Histamine food intolerance
• gluten - see Gluten Sensitivity Vs. Celiac Disease Vs. Gluten Intolerance
• dairy 
• see also - Food sensitivities

Are you eating clean and healthy throughout the day? Drinking plenty of water? 

 

Just like your nervous system is hyper-reacting to the most benign occurrences throughout the day, your nervous system is hyper-alerting to what you consume in the way of food and drink. 

 

 Also, if you're skipping meals, you may be getting symptoms of low blood sugar, which include severe anxiety. 

 

Are you waiting until the afternoon to eat your first meal every day? If so, you may want to pick a very healthy breakfast and eat first thing in the morning. Something with protein like scrambled eggs and avoid sugar and caffeine. The more you can cook at home and know exactly what you're eating, the better."

[Emma7855]

Hi @Gridley -- Thanks so much for the info (and apologies for the delay in responding!). I'm eating pretty regularly, though my diet is all over the place -- some protein and veggies, but also lots of junk food and sugar; I also tend to overeat. I haven't noticed any direct adverse side effects from specific foods (no digestion problems, etc.), so it's hard to say what would be the best way forward in terms of cleaning up my diet. Which of the food categories should I try eliminating first? I'm not sure how wise it would be to do something extreme like fully cutting out gluten or sugar, since doing so might bring about its own set of withdrawal symptoms. But at this point I'm open to anything. Thanks again.