Emma7855: request for help with Lamictal withdrawal symptoms

[Emma7855]

Thanks, @ChessieCat. I'll update my signature and provide 3 days' worth of symptoms notes.

[Emma7855]

My drug/treatment history, 2015-2020:

 

• 2015:
  • January: Started taking Xanax (0.25mg) as needed
  • May: Weekend of trying LSD, psilocybin mushrooms, MDMA
  • May: Discontinued Xanax (CT'd)
  • July: Started taking Prozac (0 --> 40mg)
  • November: Started taking Lamictal (0 --> 150mg)
• 2018:
  • May: Tapered off Prozac
  • July: Started taking Klonopin (0.125mg) as needed
• 2019:
  • March: Discontinued birth control pills (~10 years)
  • May: Discontinued Klonopin (CT'd)
  • April --> July: Tapered off Lamictal (150mg --> 0: 125mg for 3 weeks, 100mg for 3 weeks, 75mg for 3 weeks, 50mg for 2 weeks, 25mg for 1 week)
  • Mid-July: Reinstated Lamictal (25mg) after 3 days of discontinuation 
  • Mid-August: Increased Lamictal (25 --> 50mg)
  • September: Decreased Lamictal (50 --> 37.5mg)
  • December: Decreased Lamictal (37.5 --> 35 mg); started taking Trileptal (4 mg)
• 2020:
  • January: Took one birth control pill
  • April - June: Used curcumin cream (daily), 1% hydrocortisone cream (as needed), Elidel cream (as needed)
  • July: Tried 100 IU vitamin D
  • October: Started taking melatonin (0.375mg) nightly
  • November: Had one acupuncture treatment 

[Emma7855]

@ChessieCat, I shortened my signature and also added some additional details. Sorry about that. I also took notes on activities/symptoms from the past three days. Thanks again.

 

Thursday, Dec. 10th
9 - Wake up (anxious, tinnitus, brain fog)
10 - Decaf coffee
1 - Lunch (sardines, pickled onions, spinach
2:30 - Snack (chickpeas, apple)
4 - Tinnitus
7 - Stressed (anxious, brain fog, tinnitus)
7:30 - Dinner (chickpea soup, grapes, frozen popsicle)
8 - Meds (Lamictal 35 mg, Trileptal 4 mg, melatonin 0.375 mg)
8:30 - Brain fog, tinnitus
12 - Sleep

 

Friday, December 11th
8 - Wake up (anxious)
10 - Decaf coffee
12 - Crying
12:30 - Lunch (herring, pickled onions, spinach)
2 - Snack (apple, dried bananas)
4 - Sad
6 - Tinnitus 
6:30 - Snack (sugar snap peas)
6:30 - Swelling/tingling in extremities, tinnitus, pain in feet, brain fog
7:30 - Dinner (rice biryani, frozen popsicle)
8 - Tinnitus, brain fog
8 - Meds (Lamictal 35 mg, Trileptal 4 mg, melatonin 0.375 mg)
8:30 - Dizzy after standing up
2:30 - Sleep

 

Saturday, December 12th
8 - Wake up (anxious, suicidal, sad)
11:30 - Breakfast (decaf vanilla latte with oat milk, maple scone)
12 - Walk; feel winded after a few minutes
1 - Crying
3 - Snack (dried seaweed, apple, fruit leather)
4 - Crying
5 - Tinnitus 
7 - Dinner (potato, chickpeas)
8 - Meds (Lamictal 35 mg, Trileptal 4 mg, melatonin 0.375 mg)
8:30 - Snack (candy)
11:30 - Sleep

[ChessieCat]

3 hours ago, Emma7855 said:

I shortened my signature and also added some additional details

 

birth control pill can be shortened to BC

adverse reaction can be shortened to ADR

withdrawal to WD

as needed to PRN     (PRN latin "pro re nata" = as required )

month names can be reduced to 3 letters, eg Jan for January

change discontinued to stopped (shorter word)

 

Years 2007 to 2019 inclusive can be merged like the following:

 

2007: Started birth control pills 2008: Prozac 0 --> 80 mg 2010: Tapered Prozac 80 --> 0 mg 2015: LSD/shrooms/MDMA once; Xanax 0.25 mg as needed; Prozac 0 --> 40 mg; Lamictal 0 --> 150 mg 2018: Tapered Prozac 40 --> 0 mg (withdrawal reaction); Klonopin 0.125 mg as needed 2019: Discontinued birth control pills (withdrawal reaction); Klonopin 0.125 mg as needed; tapered Lamictal 150 --> 35 mg (withdrawal reaction); Trileptal 0 --> 4 mg 

2020: January: one birth control pill (adverse reaction + hormonal effects); April - June: curcumin cream daily + Elidel cream as needed (adverse reaction + hormonal effects); July: 100 IU vitamin D (adverse reaction); October: started melatonin 0.375mg nightly; November: acupuncture treatment (adverse reaction + hormonal effects)

 

Edited December 13, 2020 by ChessieCat

[Emma7855]

@ChessieCat Updated; thanks. Please let me know if there's any other information you need from me.

[Emma7855]

Current withdrawal symptoms:

Emotional: depression, anxiety, suicidal ideation

Mental: brain fog, language difficulties, executive functioning difficulties 

Visual/auditory: tinnitus, visual snow, photosensitivity, optical aberrations

Physical: insomnia, hives, dry skin

Dysautonomic: pins and needles in extremities, coldness in extremities, heart racing, difficulty breathing, dizziness upon standing, temperature dysregulation

Intolerances: exercise, medication/supplements, caffeine 

 

Current hormonal symptoms:

Irregular periods, hair shedding (head + body), thin/wrinkly/sagging skin, stretch marks, cellulite, spider veins, lower back pain, acne, fat redistribution 

 

[Altostrata]

Hello, Emma.

 

Why do you take all 3 drugs at 8 p.m.?

 

When and why was Trileptal added? What effect do you feel from it?

 

How long have you been taking 35mg Lamictal? When did the tinnitus start?

[Emma7855]

Hello, @Altostrata -- Thanks for taking the time to review my case. To answer your questions:

 

- No particular reason why I take all three at 8 PM -- I suppose just habit from years of taking lamictal in the evening. 

 

- Trileptal was added in December 2019 by a psychiatrist who assumed it would help. He was wrong, and I was wrong to seek out his expertise. It does nothing (I didn't notice any withdrawal/adverse reactions when starting it), but now I'm too scared to change the dose. (NB: Same goes for lamictal -- I'm not bipolar, nor do I have seizures, so I don't believe it does much of anything.)

 

- I started talking lamictal 150 mg in the fall of 2015; in the spring/summer of 2019 I tapered it too quickly and ended up settling on 35 mg. The tinnitus, along with the visual snow and dissociation (forgot to mention the latter in my previous post on symptoms, sorry), appeared in August 2019 -- at the tail end of my taper, the day after I had a cocktail. (NB: When I started my lamictal taper, I was already in a relatively minor withdrawal from prozac and BC pills, though I didn't realize it at the time -- I incorrectly assumed it was a new lamictal side effect.)

 

Hope this helps. 

 

Emma

[Altostrata]

18 hours ago, Emma7855 said:

the day after I had a cocktail.

 

Do you mean an alcohol cocktail?

 

When did the hives start?

 

Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php
and copy and paste the results or a link to them in this topic.

[Emma7855]

@Altostrata 

 

Yes sorry, I meant alcoholic beverage.

 

The hives started in April of this year, after I started using the curcumin gel (when I layered it with other creams, I got an adverse reaction that also affected my hormones -- I didn't realize what was going on until after the fact). 

 

Here are the drug interactions: link

 

[Emma7855]

@Altostrata / @ChessieCat, is there any other information you need from me? Thanks!

[Altostrata]

Hi, @Emma7855

 

The dry skin, etc. symptoms you describe sound like hypothyroid symptoms. Have you had this checked?

 

We see a lot of people get worse symptoms after ingesting alcohol. 

 

Did the hives appear where you put the curcimin cream on your skin? You still have them? Curcimin in a known contact allergen, see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4689497/

 

I found this with 30 seconds of Googling. If I were you, I'd research supplements or anything you put on your skin before using them.

 

We also advise people to check adverse effects of their drugs on drugs.com. For example, one of Trileptal's adverse effects is tinnitus https://www.drugs.com/ppa/oxcarbazepine.html

also true of lamotrigine.

 

I don't know what is causing your symptoms. It seems you might have several possible health conditions aside from any drug-related effects. If Trileptal isn't helping, you might consider tapering that when you feel stable enough.

[Emma7855]

Thanks, @Altostrata.

 

A few thoughts:

• During summer 2019, a few weeks after going down to 25 mg Lamictal (starting originally at 150 mg) and the day after ingesting alcohol, I developed tinnitus along with depersonalization and visual snow. This makes me believe that the tinnitus is a symptom of withdrawal rather than a side effect of Lamictal. I didn't start the Trileptal until ~6 months later. But is there a way to tell definitively what the tinnitus is caused by? Would you recommend that I taper off Trileptal and Lamictal once I'm stable, if the tinnitus is exacerbated by them? I've been on 4 mg Trileptal for 1 year and Lamictal for 6 years. As an aside, I've been taking 4 mg Trileptal by crushing a tablet and putting it in applesauce; however, I recently got 4 mg liquid from a compounding pharmacy and reacted to it. I'm not sure why that's the case. 
• I have gotten blood work done, and everything is "normal." The only problems are a) a deficiency in vitamin D, which I react to even at microdoses, and b) low sex hormones. I believe the low estrogen and progesterone were caused by the curcumin, which I was using as an anti-inflammatory but my body reacted to as an adaptogen. All of my symptoms (hives (I get them on my body, not on my face where I put the curcumin), thin/mottled/sagging skin, hair loss, weight redistribution, acne...) started after using the curcumin only a handful of times and are, I believe, caused by a lowering of estrogen and progesterone. This should not be happening to me at 32. I have seen multiple doctors who have been stumped. They suggest either going back on birth control (which I withdrew from in April 2019 and reacted to in January 2020) or taking some sort of HRT. I feel completely lost and I don't know where to go from here.
• I'm still taking melatonin 0.375 mg, but I'm concerned that it's affecting my sex hormones since I believe it can lower estrogen levels. Not sure if I should taper it or stay on it.
• A few weeks ago I added a probiotic (to help with the acne, though my digestion is okay) and started working out 3-4x/week (rowing machine and weights) (to help with the thin skin and muscle loss). No adverse reaction to either; however, just today I noticed that I reacted to decaf coffee (which I've been tolerating for many months now). Not sure if they're related, if it's caused by the fluctuating hormones, or if it's a one-off thing. 

Thanks again.

[Altostrata]

Emma, you drank alcohol and it made your symptoms worse. All bets are off. No amount of analysis of your symptoms is going to reveal a single source.

 

Please confer with a dermatologist about your allergic reaction and endocrinologist about your hormone questions.

 

You might also look into adverse effects of Trileptal and other drugs you've taken on drugs.com to see if they caused your symptoms.

 

I doubt a little melatonin has any significant effect on the symptoms you report. However, if you're worried about it, you might stop it for a while and see what happens.

 

On 12/22/2020 at 7:14 PM, Altostrata said:

If Trileptal isn't helping, you might consider tapering that when you feel stable enough.

 

If you're ready to taper, a liquid is a good way to do it. See Tips for tapering off Trileptal (oxycarbazepine)

[Emma7855]

Thank you very much, @Altostrata. I appreciate your taking the time to respond. A few follow-up questions:

• After the alcohol in summer 2019, the symptoms that I had been experiencing at the time just became worse (I already had a small amount of depersonalization and visual problems that I developed after a drug adverse reaction in 2015 -- in fact, I was using Lamictal to treat them). So I guess it must be that the alcohol further destabilized my system. However, I will withdraw from Trileptal just to be sure.
• Once I withdraw from Trileptal, would you recommend withdrawing from Lamictal as well? My withdrawal symptoms are the same 24/7 (however, my endocrine symptoms are a different story -- see below). Does that mean that I'm stable?
• I have seen multiple dermatologists, endocrinologists, and gynecologists concerning the sex hormone imbalance. The curcumin over the summer (and then the acupuncture treatment in November) severely destabilized my endocrine system -- even my shoe size has increased and my rib cage has expanded. The only treatments are birth control or HRT. However, in January 2020 I attempted to go back on a regular dose of birth control and I reacted to that. So I'm not sure where to go from here. The hypersensitivity to all medications makes this incredibly hard to treat. I even reacted to a topical 2.5% benzoyl peroxide cream that I was using to treat my acne.

 

[Emma7855]

Hello,

 

I recently got back my endocrine workup, and it turns out I am deficient in DHEA (59 pg/mL, whereas reference range is 106-300 pg/mL). This deficiency might explain my myriad hormonal symptoms. My doctor has said I should take a small dose, either orally or topically. Will doing so affect my PAWS? 

 

I also recently developed a binge eating disorder. Does BED affect PAWS?

 

Thank you,

 

Emma

 

[ChessieCat]

Because every situation/person is different, it is not really possible to predict how PAWS will be affected.  Unfortunately crystal balls do not work.

 

However, when starting anything new SA suggests starting at a low dose to see how you react.  Also, only start one thing or make one change at a time, otherwise if things worsen or improve you will not know which is causing it.

 

Altostrata, SA's founder and also a long term sufferer of PAWS (now recovered), has posted about her experience using DHEA in this link.

 

Here is the link the full SA topic:

 

dhea-dehydroepiandrosterone

 

 

Edited March 3, 2021 by ChessieCat

[Emma7855]

Thanks so much, @ChessieCat. I'll check out those threads.

 

Do you also know anything about overeating? Does food tend to make symptoms worse? 

[Emma7855]

Sorry for the additional question, but are muscle pain/joint pain/tingling symptoms of WD? I've developed joint pain all over my body, along with arthritis in my hands and feet. My muscles constantly ache and my left arm tingles on and off. 

[Emma7855]

I believe that between the curcumin gel I was using in spring 2020 and acupuncture treatment I had in fall 2020, I have severely affected my hormones and withdrawal. Not sure what's going on now but I have severe joint pain all over my body, have developed arthritis in my hands and feet, my ribcage/shoulders/feet/hands have expanded, and my nose has grown. I've "aged" some more -- my skin sags more, I have more wrinkles, my back hurts, my hair's falling out more, I'm gaining weight despite eating the same amount each day. I look about 45 years old despite only being 32. My arms constantly tingle. And I have become severely hypersensitive to everything, including now decaf coffee/tea and topical salicylic acid 2%. Last week I noticed a worsening of my my vision (everything looks slightly out of focus, colors aren't as bright, visual snow is stronger, can't see well at night) and brain fog (worsening long- and short-term memory, stronger aphasia). Over the last month I was using a probiotic because I didn't get a reaction to it, but I guess it further destabilized my CNS and hormones without my noticing. I didn't think that was possible, but here we are.

 

Feeling really low. Could use some words of support. Thanks.

[Emma7855]

Can you just stop taking supplements, or do you need to taper those too? I believe I'm having a hormonal reaction to the probiotic and would like to stop taking it. Thanks. 

[ChessieCat]

How long have you been taking it for?

 

Are you sure that how you are feeling is not related to your menstrual cycle (if that is applicable to you)?  Or if you are older, menopause?

 

Is there anything else that has changed?

 

If you have only been taking it for 1 week then you might be able to stop it.

 

If it has been longer than 2 weeks then it might be better to do a quick taper off.  If it has been longer than 4 weeks then it might be better to do a small test reduction first to see how it affects you.  If that went okay then you could try a larger reduction.

 

Of course, keep daily notes for yourself so you can observe your symptoms.

[Emma7855]

Hi @ChessieCat and @Altostrata,

 

Thanks so much for your help. I was taking the probiotic for a couple of weeks so I did a quick taper and seemed to be fine. I noticed I started reacting to decaf drinks and natural flavorings in tea while on it; my skin also started to sag more and I developed system-wide arthritis and enlarging of my tendons and cartilage. I'm not sure if the last two are related to the probiotic, but it's a weird coincidence that they happened at the same time. Unfortunately my body hasn't recent since coming off the probiotic, but at least I didn't notice any increase in withdrawal symptoms.

 

In other news, on Tuesday night I incorrectly weighed out my Trileptal and inadvertently took 7 mg instead of my usual 4 mg; I instantly got a strong reaction and was bedridden the next day (it felt like I had been severely drugged). On Wednesday night I got a strong reaction when I took 3 mg so left it at that, and again felt drugged the next day. Similarly on Thursday night I just took 1 mg and again had the same immediate reaction. So last night (Friday night) I didn't take any, felt fine, but today (Saturday) woke up with severe brain fog and pain in my brain, if that makes sense. What should I do? Try to go back to 4 mg? If so, should I take it now or wait until tonight? 

 

Thanks so much.

[Emma7855]

Hi @ChessieCat and @Altostrata -- To follow up on my post from this morning, I just took 1.5 mg Trileptal (at 6 PM, which is when I usually take meds) and had a minor reaction but not as severe as the reactions from previous days. Should I continue at this dose instead of going back to my normal 4 mg? Or should I try taking less? I'm not sure if this makes a difference, but I take the Trileptal by crushing a tablet and dissolving it in applesauce. A few months ago I tried taking the equivalent amount of Trileptal that was compounded by a pharmacist, but I got an immediate reaction. Is there a reason for the discrepancy between the two methods of ingestion? Is it possible that my brain is not actually addicted to the Trileptal? Or is there something about the applesauce that makes it more tolerable? Thanks so much for your help!

[Emma7855]

I woke up this morning with severe brain pain and sound/sight sensitivity, most likely from being in Trileptal withdrawal. What should I do? It seems like I can't take my normal dose of 4 mg because I get an adverse reaction to it (see my last two posts -- last night I took 1.5 mg).

 

What should I do? I'd appreciate any help. Thank you in advance. 

[Emma7855]

Last night I tried taking 2 mg and got a small reaction, but then the brain fog and brain pain worsened over the course of the night, and I only ended up getting 2 hours of sleep. My heart is currently racing and my brain pain is severe. I'm really scared. I don't know what's going on and I don't know how to fix it. Is there anyone who could help me?

 

If I did or said something that goes against this site's rules, please let me know so that I can change. Am I being actively ignored? Or am I doing something wrong? 😞

[Emma7855]

Update: Tonight I took 0.1 mg Trileptal and got an adverse reaction. I don't know where to go from here. Any help would be greatly appreciated.

[Altostrata]

Please describe this reaction you've gotten from taking Trileptal lately.

 

When did you start Trileptal this last time around, at what dosage?

 

Have you skipped any doses of Trileptal or lamotrigine lately, or drunk alcohol?

[Emma7855]

Hi @Altostrata -- Thanks for getting back to me. 

 

I've been taking 4 mg Trileptal since December 2019. I believe I am much more sensitive now than I was then because I took a probiotic for a few weeks in February 2021; after I started taking it I developed an intolerance to decaf tea and coffee, and my brain fog became slightly worse. I only took it for a coupe of weeks. No, I have not drunk any alcohol recently, nor have I missed any doses of Lamictal, though I did miss one dose of Trileptal (see below). 

 

Concerning the recent Trileptal doses and reactions:

• Tuesday, March 23rd: I accidentally took 7 mg Trileptal and got an immediate reaction (strong brain fog, tinnitus, heart racing, feeling "drugged" or "high"). 
• Wednesday, March 24th: I woke up in the middle of the night with severe brain fog, feeling sick and "drugged." The feeling lasted all day but subsided a bit at night. That night I took 3 mg Trileptal and again got a similar immediate reaction. 
• Thursday, March 25th: Again woke up in the middle of the night with brain fog and feeling "drugged." The feeling lasted all day but subsided a bit at night. That night I took 1 mg Trileptal and again got a similar immediate reaction, but it wasn't as strong.
• Friday, March 26th: Again woke up in the middle of the night with brain fog and feeling "drugged," but it wasn't as strong as the last two days. That night I tried skipping Trileptal (0 mg) so that I could return to "baseline" (dumb).
• Saturday, March 27th: I got 7 hours of sleep but woke up with severe brain fog, sight/sound sensitivity, and brain pain (like my brain was in a vise, and it hurt to think). Different than the adverse reaction I had gotten the past few days -- it's the same feeling I used to get when I'd miss my dose of Prozac back in the day, so I know it's withdrawal-related. I was thoroughly out of it over the course of the day. That night I took 1.5 mg Trileptal but got a slight immediate reaction (brain fog, heart racing, tinnitus, etc.).
• Sunday, March 28th: I got 7 hours of sleep but again woke up with severe brain fog, sight/sound sensitivity, and brain pain. This lasted all day. That night I took 2 mg Trileptal and again got an immediate reaction.
• Monday, March 29th: Could only get 1.5 hours of sleep. Again woke up with severe brain fog, sight/sound sensitivity, and brain pain. Out of it all day. That night I took 0.1 mg Trileptal and got an immediate, strong reaction (heart racing, brain fog, lightheadedness, etc.)
• Tuesday, March 30th: Got 5 hours of sleep. Again woke up with brain fog, sight/sound sensitivity, and brain pain. I'm feeling anxious this morning.

Thanks again.

 

[Altostrata]

Emma, there are so many inconsistencies in your recent drug intake, I can't follow them.

 

If you think you've become sensitized to Trileptal, perhaps you should just prepare yourself to cope with the withdrawal symptoms for a while. I don't have any easy answers for you.

[Emma7855]

Thanks @Altostrata. I'll give myself a week on 0.1 mg and see how I'm doing. Hopefully I can stabilize. I'll report back. 

[Emma7855]

Hs anyone ever reacted to vinegar? I see that it has an alcohol content of 0.5-2%. I used a teaspoon of balsamic vinegar in a dish tonight and had a CNS reaction. I did a search for it here but only found posts about the benefits of apple cider vinegar -- nothing about possible reactions.

[Erell]

3 minutes ago, Emma7855 said:

Hs anyone ever reacted to vinegar? I see that it has an alcohol content of 0.5-2%. I used a teaspoon of balsamic vinegar in a dish tonight and had a CNS reaction. I did a search for it here but only found posts about the benefits of apple cider vinegar -- nothing about possible reactions.

 

I honestly don't know, and I'm sorry you had a reaction.

If you notice you react badly to something, I would avoid it for now.

I know I avoid vinegar too for now as I want to avoid as much as possible the possibility of ingesting alcohol.

 

Some people seem to get sensitive to high histamine food and avoid vinegar.

I cant tell if it's your case but you might be interested by this thread : 

 

histamine-food-intolerance

 

Take care ☀️

 

[Emma7855]

Thanks, @Erell! When did you start avoiding it? And what else do you avoid? These days I seem to react to almost everything; it's so frustrating! How are you doing otherwise?

[Erell]

On 5/7/2021 at 11:19 PM, Emma7855 said:

Thanks, @Erell! When did you start avoiding it? And what else do you avoid? These days I seem to react to almost everything; it's so frustrating! How are you doing otherwise?

 

I understand the frustration : I find it really hard to pinpoint triggering food while things are in chaos and you feel like you react to everything.

 

I guess as everything we can only try our best ☺

 

Alcohol : I've developped a fear of alcohol since my benzo taper, so I don't drink or eat it since years.

Since months I avoid vinegar because of this fear, but I honestly don't know if it's relevant 😉

As you seem to react to it, you might avoid it and try again later. I do believe that as we heal we will progressively be able to think less about what we eat.

 

Otherwise I'm carefull with sugar, histamine and some foods that seems to trigger my acid reflux.

But I'm also carefull to eat a bit of everything and not avoid too much because I want to give all the nutrients my body needs.

I focus more on eating organic food and cook fresh food (lucky to live with a family that cook when I can't).

 

I don't know, I don't think there are clear or universal answers about food. You might want to keep a diary and see if you notice specific reactions ☺

 

And I also remember to try to find pleasure to nurture my brain with positive emotions too : I looove rice pudding, so even if I avoid dairy products, I also allow myself to eat some as a pleasure gift 😉

I do think the pleasure is an important thing to keep in mind : as many people in WD i've lost my appetite and a lot of weight, so it does matter to try to re-learn to find pleasure in food.

 

Take care ☀️

Edited May 9, 2021 by Erell

[Emma7855]

Thanks, @Erell  Do you also stay away from chocolate, since it has caffeine?