YellowBird: Introduction, Lamictal withdrawal

[YellowBird]

Hello everyone, 

Just want to quickly introduce myself. I am currently tapering off Lamictal both due to physical side effects from the medication and because my husband and I would like to have a baby. 

I have been on the medication since 2018 and my tapering schedule is in my signature. I am very aware that I tapered too quickly and am suffering immensely because of it. I will be holding my current dose until all symptoms have resolved. Right now I am simply disappointed in myself for thinking "it might not happen to me" and a bit scared of how I'm feeling (physically) as a result of my choices.  I am in contact with my primary care doctor and my psychiatrist about my symptoms. I also see a therapist bi-weekly. 

[Gridley]

Welcome to SurvivingAntidepressants, YellowBird.  Thanks for completing your signature.

 

As you know, you're tapering much faster than we recommend, which is no faster than 10% of your current dose every four weeks.

 

Why taper by 10% of my dosage?

 

This link is specifically about tapering Lamictal, including how to get the nonstandard doses needed for a 10% taper.

 

Tips for tapering off lamotrigine (Lamictal)

 

What are your symptoms?  Here's some information on withdrawal and the healing process.

 

What is withdrawal syndrome.

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

 

You might consider an updose.  An updose (called a reinstatement when you're completely off the drug in question) of a very small dose of the original drug is the only known way to help alleviate withdrawal syndrome.  It isn’t a guarantee of diminished symptoms but it’s the best tactic available. The only alternative is to try and wait out the symptoms and manage as best you can until your central nervous system returns to homeostasis.  Unfortunately no one can give you an exact timeline as to when you will start feeling better and while some do recover relatively easily, for others it can take quite a bit longer.  It is best to updose/reinstate as soon as possible after withdrawal symptoms occur.  Please read:

 

About reinstating and stabilizing to reduce withdrawal symptoms. -- at least the first page of the topic

 

If you want to try an updose, you could go back up to 131.25 and see how that works.  Though you might feel the effects the same day as the updose, it takes 7 to 10 for the full effect of the updose to be felt.  Then you'd wait to stabilize, which can take several months.  Once, you'd stabilized, you'd begin your 10% taper.

 

 

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

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems.

 

This is your introduction topic -- the place for you to ask questions, record symptoms, share your progress, and connect with other members of the SA community.  I hope you’ll find the information in the SA forums helpful for your situation.  I'm sorry that you are in the position that you need the information, but I am glad that you found us.

 

 

 

 

 

 

 

[YellowBird]

Hi Gridley, 

Thank you for your response. I've read through some of the links you provided. I've been taking well below the recommended dose of fish oil in the Omega-3 article. I don't plan to mess with anything right now, given my current state, but I will likely up my fish oil dose as things even out. My brain fog has been pretty intense, and I was feeling a bit defeated by that since I was told fish oil would help (but was never given a dose recommendation. It's nice to know there may be room for improvement by upping the fish oil in the future. 

I also need to update my signature as I forgot I also have klonopin prescribed to me as needed. I take it so rarely that I forgot to even list it. I will be adding that (.25mg PRN for sleep and/or panic attack). 

I am doing my best to keep track of my symptoms on a spreadsheet, along with the dates of dropping my dose. But as I'm browsing through this site and seeing things such as the "Daily Checklist of Antidepressant Withdrawal Symptoms" from Dr. Joseph Glenmullen, I realize I could be doing a better job. 

My original reason for getting off Lamictal is because, when I was on my highest dose of Lamictal, I started to have a slew of autoimmune-like symptoms. And after seeing many, many doctors, including a rheumatologist, and getting many, many blood tests done, everything came back negative except for mono. But they could only tell me that I had mono "at some point," not currently. I went from being an avid hiker/biker/swimmer/etc, to not even being able to walk a mile down the street without feeling weak and worn out. I would lay in bed and tremble at night from exhaustion. I had random low-grade fevers. Sore throats. Constantly had muscle aches and just felt generally inflamed. I was absolutely miserable, and the ONLY thing that helped was when I started to lower my dose of Lamictal (under the supervision of my psychiatrist). 

I have a very long list of things going on right now: 
-vertigo
-sinus issues (that seem to flare up around the times that I taper)
-tinnitus 
-upset stomach and lack of appetite

-fatigue

-general aches and pains/flu-like symptoms (no fever)

-feeling/getting cold more easily than normal (I love the winter, this has been highly unusual for me to be so affected by the cold). 

- headache (feels like a balloon is being blown up inside my head)
-VERY swollen lymph nodes in my neck 

-swollen lymph nodes near my armpits 
- Very stiff neck 

-Feeling very much the way I did when I first decided I wanted to started decreasing my dose. 

Other things to note: 
-I eat incredibly healthy

-I am a vegetarian (but considering adding chicken and fish back into my diet). 
-I get on a walk every day 
-When I'm well, I go to the gym regularly 
-I don't smoke, drink alcohol, or do any drugs (I am 100% sober and have been for quite some time)

        *with the exception of CBD as needed for nausea.

-I see a chiropractor regularly 
-I get massages once every couple of months if my budget allows, to help with the sore/tight muscles 

-I work from home (I would not be able to work at all if that wasn't the case, given how I'm feeling)
-I have a very supportive spouse 

-Mental health wise, I've been lucky in that I haven't noticed an increase in depression. 

Just feeling very defeated at the moment with how awful I feel physically. The pain/pressure/dizziness in my head ache neck is near unbearable. 

 

 

 

[Gridley]

15 minutes ago, YellowBird said:

I have a very long list of things going on right now:

A lot of these symptoms are very typical of withdrawal.  The flu-like symptom is textbook.  The Glenmullen list is by no means complete;  since the central nervous system undergirds everything, there's really no telling how withdrawal will manifest.

 

15 minutes ago, YellowBird said:

(but considering adding chicken and fish back into my diet)

Just a personal opinion, but this likely would be a good idea.

 

15 minutes ago, YellowBird said:

how awful I feel physically

It does get better.

 

The Windows and Waves Pattern of Stabilization

 

Edited March 21 by Gridley

[YellowBird]

Would you mind sharing your thought process on adding chicken and fish back into my diet? I have no idea why I, all of the sudden, think it's a good idea. No one has told me it would help with withdrawal, nor was I considering adding it back into my diet for that reason. I just, out of the blue one day, got the idea in my head that it would be good to reintroduce meat, and I can't seem to shake it. I was never a big meat eater but cut it out completely about 4 years ago. 

 

[Gridley]

22 minutes ago, YellowBird said:

Would you mind sharing your thought process on adding chicken and fish back into my diet?

This is my personal view, but we're omnivores.  Getting all the necessary nutrients from a vegetarian diet is possible but you have to consciously work at it and your body has to physically work at it--and in withdrawal you don't need to add extra tasks and stressors.  Why make things hard on yourself?  

 

If you got the idea out of the blue and can't shake it, your body or your intuition or both may well have been telling you something.  I was pretty much vegetarian not long ago and my body was screaming at me to eat some meat, so I did and I'm glad I did.

 

 

[WilliamR]

@YellowBird I'm sending you good vibes on your journey... I know it is very difficult but you can do it!

 

Also, I was vegan for a bit and started feeling bad...my intuition/body told me to eat meat so I did and I immediately started feeling better. 

 

Lots of love

[UpperWillow]

@YellowBird I have not read this entire thread but I wanted to mention that you want to look into chronic Epstein Barr Virus (what causes mono) as well. 90% of the population carries EBV but a small percentage experience reactivation, which causes the flu like symptoms that you mentioned. There is a Facebook group you can request to join for peer support and guidance if that is something that resonates. 

[YellowBird]

On 3/21/2023 at 5:09 PM, Gridley said:

This is my personal view, but we're omnivores.  Getting all the necessary nutrients from a vegetarian diet is possible but you have to consciously work at it and your body has to physically work at it--and in withdrawal you don't need to add extra tasks and stressors.  Why make things hard on yourself?  

 

If you got the idea out of the blue and can't shake it, your body or your intuition or both may well have been telling you something.  I was pretty much vegetarian not long ago and my body was screaming at me to eat some meat, so I did and I'm glad I did.

 

 

I started to add in chicken very slowly last week. I'm curious to see how I feel in the upcoming weeks/months. 

[YellowBird]

On 4/1/2023 at 4:45 PM, UpperWillow said:

@YellowBird I have not read this entire thread but I wanted to mention that you want to look into chronic Epstein Barr Virus (what causes mono) as well. 90% of the population carries EBV but a small percentage experience reactivation, which causes the flu like symptoms that you mentioned. There is a Facebook group you can request to join for peer support and guidance if that is something that resonates. 

Thank you for the facebook group suggestion. I am pending approval for one of the groups. This has been an ongoing issue for me and as of lately it's led to some pretty scary tests. I get a CT scan next week because they're concerned it's not EBV but something "mimicking" EBV. It seems like, whatever it is, it flares up/gets way worse when I taper. 

[UpperWillow]

9 hours ago, YellowBird said:

Thank you for the facebook group suggestion. I am pending approval for one of the groups. This has been an ongoing issue for me and as of lately it's led to some pretty scary tests. I get a CT scan next week because they're concerned it's not EBV but something "mimicking" EBV. It seems like, whatever it is, it flares up/gets way worse when I taper. 

I'm so sorry to hear that! I've frequently seen Lyme disease and toxic mold illness or CIRS mentioned with EBV, just thought to mention in case that hasn't been considered. I'm glad your doctor is taking it seriously at the very least. I hope you are able to get answers and proper treatment soon. Best of luck to you!