recovering10236: going off Lamictal

[recovering10236]

Hello all, I was put on Lamictal and had severe neck and back pain, and constant palpitations. The veins in my forehead were bulging. I actually thought I was having a heart attack or something, but the ER visit proved otherwise. I went against my gut and listened to my Dr. to stay on this medication. Three weeks into it I starting having panic attacks--well, actually, just a feeling of intense impending doom. I couldn't feel good about anything. Everything scared me and worried me, and I couldn't sit still or relax. Me and my Dr. thought it was from Effexor withdrawal, and would pass. So I kept taking the Lamictal, though only 12.5 mg because I was so sensitive to it. It was weird though: I would get that feeling for a few hours at apparently random times of the day, then it would seem to randomly go away and I'd feel okay. Sometimes it would last most of the day; other times it seemed to be for days. Sometimes it would happen every day, or every three days.  It seemed to go in waves, or cycles that lasted 3-5 days. Anyone experience this?! I haven't read much about this or heard any good answers for any doctors. PLEASE tell me if you've had this. 

The waves seemed to diminish after 2 months, and I had a week or so of feeling pretty decent. Then I got into a serious car accident that caused me to be near-panic almost all the time. Two months go by and it seemed to improve, but by that point I realized it was not the Effexor (regardless of my Dr.'s opinion), and started going down on Lamictal. 

Long story short, it's been three months of doing down. I went from 12.5 to 8, and that was pretty rough with the typical skin-crawling, fatigue, insomnia, depression, anxiety, and of course the awful panicky feeling. I tried to settle there and see if the panicky feeling would go away once the withdrawals stopped. It was better two months later, but still present. So I decided to get all the way off of it and went down to 7, then started using liquid suspension going down 2.5 mg. every three days. That went well until I got down to 4 mg., which is when the panicky sensations (from withdrawal) came back super intense. So I took a break for two weeks, then proceeded to go down 1 mg. every three days. That lasted for two weeks. Now I'm down to 3.2, going down .1 every 4-5 days. 

I'm hoping to get off of this awful drug before March, which is when my pregnant wife is due. The pharmacist I have been working with has been helpful. He's a compound pharmacist, and really knowledgeable. He's put me on CBD, which has helped. He says he's helped dozens of people get off of Lamictal, and he claims CBC has helped all of them. So I'm doing it.  Anyone else tried this? There is some stuff on the internet about CBD with psychiatric medication withdrawal. I've only been doing it for two or three week, but it seems to be helping; though it's hard to know how much because things are so unpredictable for me with this withdrawal (symptoms change in type and degree on a daily and weekly basis). Has anyone experienced different withdrawals as they got lower? 

I have do go down 3.2 mg to .5, at which point the pharmacist said I should start doing the every-other-day type of titration. Guess we'll see.  

[Altostrata]

Welcome, recovering.

 

I moved your post here to start your own Introductions topic.

 

It sounds like you had adverse reactions to Lamictal. Did you also go off Effexor? When was that? What dosage were you taking, what was your taper method?

 

Those waves might have been from the Effexor withdrawal.

 

On 12/5/2019 at 4:42 PM, recovering10236 said:

Long story short, it's been three months of doing down. I went from 12.5 to 8, and that was pretty rough with the typical skin-crawling, fatigue, insomnia, depression, anxiety, and of course the awful panicky feeling. I tried to settle there and see if the panicky feeling would go away once the withdrawals stopped. It was better two months later, but still present. So I decided to get all the way off of it and went down to 7, then started using liquid suspension going down 2.5 mg. every three days. That went well until I got down to 4 mg., which is when the panicky sensations (from withdrawal) came back super intense. So I took a break for two weeks, then proceeded to go down 1 mg. every three days. That lasted for two weeks. Now I'm down to 3.2, going down .1 every 4-5 days. 

 

If you are having withdrawal symptoms while tapering, if I were you, I'd stop tapering, let your nervous system settle down so you don't have post-acute withdrawal symptoms after you're off. They can last a long time.

 

Never, ever skip doses to taper any psychiatric drug, please!

 

See Tips for tapering off Lamictal (lamotrigine)

 

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.

 

Please let us know how you're doing.

 

Edited January 25, 2023 by Shep
edited to reflect new username

[Jmizz]

@recovering10236

How you doing man? We kind of have similar stories.

Edited January 25, 2023 by Shep
updated with member's new username

[Mariposa]

I experienced lamictal withdrawals like you’re describing, but not the initial reaction. Mine may also have been complicated by a too quick celexa taper. I did take about 15 months to fully taper the last 12.5 mg of lamictal after starting at 200.  
 

I know it’s hard to compare situations since each of our stories is so complex. But the one thing that stands out to me from what I read of your story...I also wanted to rush the taper just to get rid of the debilitating panicky skin crawls and other symptoms. At the time I couldn’t decide whether reinstating and holding would prolong the misery or if Id be better off consistently tapering as I could handle it, since I’d suffer either way. 
 

I ended up choosing the latter because of my lack of information and desperation. All I can say is that final jump, when I wasn’t able to get smaller increments, had a significant impact I wasn’t prepared for. This is just my story of course and I wish you’re having a much easier time.  
 

Please be careful and cautious with the taper. I know it’s hard when the suffering is so high and I’m so sorry it is. 

[Jmizz]

@Mariposa

 

what dose did you finally jump off Lamictal?

[Mariposa]

@Jmizz

Wish I had an exact answer for you, but it all got pretty confusing at the end. And I complicated my process because I fast tapered from 200 to 12.5, reinstated to 25 and then started diluting the lamictal with water and doing a liquid taper of 10% following SA guidelines.  I definitely did not have a handle on what was going on or the concept of 'going easy' in order to preserve some parts of my functional life.

 

I definitely was working with tenths of a milligram by the end.  But then I started to notice that by the time I got to miniscule amounts, I didn't feel confident I could taper accurately at all just based on how I observed the suspension, plus the limitations of the syringe, plus my fearful withdrawal brain. Maybe you'll have better luck with it.

 

Like recovering10236, I never felt like holding ever smoothed out the symptoms and I was starting to feel obsessive over the taper, so I just decided that for myself, I would jump off so I could make the psychological shift to commit to healing. I don't know that that was the right choice, meaning, whether it worsened my symptoms or whether the ball was already rolling, but I eventually did make it through the acute withdrawal symptoms, about 18 months later.   

Edited January 25, 2023 by Shep
edited to reflect new username

[recovering10236]

Hello everybody. I'm sorry I never responded. I was in such a hurricane of a situation it's a wonder I even remember it. Thank you everybody for encouragement and advice. I ended up seeing a psychiatrist who got me off Lamictal by putting me on Clozapine, but not long enough to have withdrawals from when I quit that. I was down to 2.5 mg on Lamictal and stopped, then with the Clozapine I was able to endure it. I then got off Buspirone and Gabapentin with relatively no problems. I was pretty anxious still from what the Lamictal did to my nervous system, but was able to start healing better with it out of my system. I slowly but surely regained cognitive, physical, and emotional stability. Months and years rolled by but I eventually returned almost entirely back to normal. What has not returned (some visual problems mainly) are improving and apparently on their way out too. I was unfortunately put on Prozac and Clonidine during that time, but I will discuss that in another post. Just wanted to give an update and spread some hope. Speaking of which, I hope you all are doing better. I'm also trying to figure out how to respond to individual posts, so I will try to follow up with each of you when I do. Take care. 

[getofflex]

Thanks for coming back, and keeping us posted.  Congratulations for getting off the Lamictal, Buspirone, and Gabapentin! How long were you on the Clozapine?  Can you please add this to your signature - the dates you were on this, the drug name, and the dosage.  It's wonderful that you recovered, and returned to almost normal!  

 

Do you intend to stay on the Prozac and Clonidine, or will you taper off of those in the future?  

 

To respond to a post, you can highlight what the person said that you want to respond to, and it will give you the option to put that quote in the reply box at the bottom of the thread.  Then, you can just type your response under that, and then click "submit reply" under the text box.  

 

 

Edited January 24, 2023 by getofflex

[recovering10236]

11 minutes ago, getofflex said:

Thanks for coming back, and keeping us posted.  Congratulations for getting off the Lamictal, Buspirone, and Gabapentin! How long were you on the Clozapine?  Can you please add this to your signature - the dates you were on this, the drug name, and the dosage.  It's wonderful that you recovered, and returned to almost normal!  

 

Do you intend to stay on the Prozac and Clonidine, or will you taper off of those in the future?  

 

To respond to a post, you can highlight what the person said that you want to respond to, and it will give you the option to put that quote in the reply box at the bottom of the thread.  Then, you can just type your response under that, and then click "submit reply" under the text box.  

 

Thank you getofflex! I just updated my signature. Thanks for the questions. I'll answer them the best I can. 

 

I do not intend on staying on those meds. In fact, I got off Prozac in 2021, and went through (still am) moderate withdraws (not as bad as on Lamictal). I'm mostly recovered from that. I think it was slowing down my recovery. I never felt right on Prozac, and was able to do what I believe treated the root issue for taking meds: probiotics, supplementing according to my gene variants (MTHFR, COMT), eating an anti-inflammatory diet (and for gut microbe), regular exercise, mindfulness, CBT, and therapy. So I wanted to get off it and am so glad I did. About 6 months into the Prozac withdraws I could tell I was healing quicker from what Lamictal did to me than when I was on Prozac, so that was a good choice, though I should have tapered slower. (went down from 10 mg to 5 mg to 0 over two months). Most of my healing from Lamictal has been this last year off Prozac. I don't believe I could have healed on it. And I do plan on getting off Clonidine, but may have to wait a while. I was going to try this year, but then something happened. 

 

In fact, I wanted to ask someone on here about that. I was cruising with my withdraws and recovering rapidly. I felt great 95% of the time, and I estimated that I would be nearly 100% recovered from all symptoms this year (even visual snow has improved much); however, I could tell my nervous system was extremely sensitive because stress or working out too much brought on spasticity and other symptoms. Then I forgot my Clonidine dose one day. That sent me into severe anxiety with intense physical symptoms. I took my dose when I realize (15 hours later), and expected to improve immediately. I did not. It's been three weeks and I still don't feel like how I felt before forgetting my dose. It calmed down tremendously after three days, and after that first week it's generally been better, but I have frequent and moderate anxiety and now a return of other withdraw symptoms I had long lost. I'm worried I messed something up with the Clonidine or that my body won't recover from this. It sounds silly now that I read it but I've been severely discouraged and anxious about this. Any encouragement or hope would be greatly appreciated. 

[getofflex]

23 hours ago, recovering10236 said:

Then I forgot my Clonidine dose one day. That sent me into severe anxiety with intense physical symptoms. I took my dose when I realize (15 hours later), and expected to improve immediately. I did not. It's been three weeks and I still don't feel like how I felt before forgetting my dose.

It sounds like your nervous system is hypersensitized from withdrawal.  I can relate - so is mine.  I'm also affected similarly by over exercising, stress, and other things.  When our systems are hypersensitive, we can go into a wave when things happen - even sudden changes in the weather.  I'm assuming you are familiar with windows and waves.  

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

Missing doses of our drugs, or not taking them at the same time each day, is hard on the nervous system.  We suggest having a plan to make sure you take your drugs at the same time every day.  

 

Is clonidine the only drug you are on now?  

 

Please also add your supplements to your drug signature.  

 

 

Edited January 25, 2023 by Shep
edited to reflect new username

[recovering10236]

3 hours ago, getofflex said:

It sounds like your nervous system is hypersensitized from withdrawal.  I can relate - so is mine.  I'm also affected similarly by over exercising, stress, and other things.  When our systems are hypersensitive, we can go into a wave when things happen - even sudden changes in the weather.  I'm assuming you are familiar with windows and waves.  

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

Missing doses of our drugs, or not taking them at the same time each day, is hard on the nervous system.  We suggest having a plan to make sure you take your drugs at the same time every day.  

 

Is clonidine the only drug you are on now?  

Thank you. I am familiar with these ideas. I believe you are right. It's pretty crazy how sensitive we can become. I hope we can heal soon. I had not specifically heard about missing doses but that makes sense. I now have a pill box and an extra reminder. Thanks for the confirmation and advice. 

 

Yes, Clonidine is the only drug I'm on now. When my nervous system is healed I plan to get off that too, but I think you are right about it being extremely sensitive at the moment. I suppose I will just have to wait this out. I also checked and my blood pressure is extremely high. My doctor wants to put me on an extra dose of Clonidine for a few days to let my body catch up. She said even a person with a regular nervous system could have this happen for a few weeks, so I believe I will try that. 

 

Congratulations on being drug-free! As you said, I also believe I didn't need any medication in the first place, but had symptoms from complex trauma. I'm curious how much your nervous system has healed by this point. Thanks!

[getofflex]

You may also want to try non drug ways of lowering your blood pressure.  Stay away from caffeine, lower sodium intake, lose weight, stop smoking, avoid stress, and gentle aerobic exercise.  I'm concerned that the extra dose of Clonidine may further destabilize your nervous system, but I don't want to tell you not to take it, because very high blood pressure is dangerous.   

 

My nervous system is still healing.  But, I'm not sure how much the symptoms (insomnia, anxiety, weepiness, fatigue, brain fog) are from CPTSD, and how much they are from WD. I suspect they are from both.  However, I certainly feel much better now than I did in early WD.  

[recovering10236]

On 1/25/2023 at 7:28 PM, getofflex said:

You may also want to try non drug ways of lowering your blood pressure.  Stay away from caffeine, lower sodium intake, lose weight, stop smoking, avoid stress, and gentle aerobic exercise.  I'm concerned that the extra dose of Clonidine may further destabilize your nervous system, but I don't want to tell you not to take it, because very high blood pressure is dangerous.   

 

My nervous system is still healing.  But, I'm not sure how much the symptoms (insomnia, anxiety, weepiness, fatigue, brain fog) are from CPTSD, and how much they are from WD. I suspect they are from both.  However, I certainly feel much better now than I did in early WD.  

Thank you for sharing your concern. I’ll have to take it into consideration. I have already done everything to decrease my blood pressure naturally, so I’m just trying to weigh the pros and cons.
 

I understand what you mean about not knowing what exactly symptoms are from. As I am healing I would like to return to therapy to continue working through trauma. I’ve been wondering how much it might help some of my symptoms and maybe even speed up withdrawal. I don’t know.

 

That’s great to hear you have improved after actually successfully getting off all the medication. Congratulations! It only gets better from here, right? 
 

 

[recovering10236]

Hey everyone, I don't often post but have been in a scary place and my doctors are useless so I wanted to get some opinions. I have been healing from getting off Lamicatal (off in 2020) and Prozac (2021), and have been cruising. Then in January this year I accidently took a Clonidine dos, which I still take daily, too late and it resensitized my nervous system. My doctor told me to take a few extra doses to help my body catch up and it helped tremendously, but I still wasn't back to where I was. So a few weeks ago I took another extra dose, smaller this time, and also had much success that seemed to recalibrate my nervous system from that time onward. But last week I tried it again, this time with an even smaller dose, and instead of it working it seemed to make things worse. I had adreniline from it, and I seem to be in an intense wave since then (with the exception of two days). I had a similar wave a month ago but this seems longer than most waves and correlates with that dose. My question is: can a super small dose of something I tolerate well cause an adverse, paradoxical, reaction? Could this be a coincidence? Mind you, I still take Clonidine every night with no issues, and twice I've had it only help. So I'm confuzed and worried this will go on for a long time. The tension, anxiety, and increased heart rate is hell to go through. Any encouragment or insight would be appreciated. Thank you. 

[FireflyFyte]

On 8/18/2023 at 2:08 PM, recovering10236 said:

Hey everyone, I don't often post but have been in a scary place and my doctors are useless so I wanted to get some opinions. I have been healing from getting off Lamicatal (off in 2020) and Prozac (2021), and have been cruising. Then in January this year I accidently took a Clonidine dos, which I still take daily, too late and it resensitized my nervous system. My doctor told me to take a few extra doses to help my body catch up and it helped tremendously, but I still wasn't back to where I was. So a few weeks ago I took another extra dose, smaller this time, and also had much success that seemed to recalibrate my nervous system from that time onward. But last week I tried it again, this time with an even smaller dose, and instead of it working it seemed to make things worse. I had adreniline from it, and I seem to be in an intense wave since then (with the exception of two days). I had a similar wave a month ago but this seems longer than most waves and correlates with that dose. My question is: can a super small dose of something I tolerate well cause an adverse, paradoxical, reaction? Could this be a coincidence? Mind you, I still take Clonidine every night with no issues, and twice I've had it only help. So I'm confuzed and worried this will go on for a long time. The tension, anxiety, and increased heart rate is hell to go through. Any encouragment or insight would be appreciated. Thank you. 

 

I have moved your post from another forum to your own introductory post where we ask that you post any questions that you might have.