Emma7855: request for help with Lamictal withdrawal symptoms

[Mark88]

I had a very bad reaction to chocolate 

[Emma7855]

@Mark88 Sorry to hear that. What else do you react to?

[Mark88]

Anything with sugar in it gives me anxiety,

[Erell]

5 hours ago, Emma7855 said:

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

Well i'm not really a "sugar person" so I don't get tempted by chocolate 😉

 

My favourite vice is more about sourness : pickles, vinaigrette, lemon ... well, everything that contains acidity and/or vinegar! 😅

And salt ! Oh gosh, I just love salt ! 

 

One day I'll celebrate healing with a bag of sea salt and vinegar crisps 😉

 

Have you considered to keep a diary to see if some foods are triggering ?

 

Take care ☀️

 

Edited May 13, 2021 by Erell

[Emma7855]

Thanks @Mark88 and @Erell! Interesting. I don't think I react to sugar or acidity.... How do you fare with herbal teas? I used to love rooibus and mint, and now I can't tolerate either one. I'm not sure what's going on, since those are both low histamine and don't have alcohol/caffeine/etc. This is so frustrating! I've been keeping a food diary but thanks for the suggestion Erell. 

[Emma7855]

Hi - Does anyone know how we fare with hair dye? Thanks.

[Emma7855]

Hello. Wondering if anyone else here reacts to topical lotions/creams/oils? 

[Emma7855]

Used Lime Away yesterday and accidentally inhaled the fumes -- immediately developed significant brain fog, anxiety, tinnitus, DP/DR, and hands/feet swelling. Scared it's permanent. It seems like each time that I do something to further injure my CNS (over the past 2 years), I never return to baseline; instead, that becomes my new normal.  

[Emma7855]

Hello @Altostrata, @ChessieCat, @Gridley, and other moderators. I could desperately use your advice. I've been taking 35 mg Lamictal (pills) and 0.3 mg Trileptal (weighed out on a scale) for many months now, and although I'm still symptomatic, I'm relatively stable from day to day. I take my medication at 7:30 PM.

 

Last night at 7:30 PM I was on a plane, and so I was unable to get an accurate reading on the scale. I opted to take the Lamictal at that l time but wait until the plane landed at 11 PM to take the Trileptal. Unfortunately, in that 3.5 hour timespan on the plane I developed withdrawal symptoms (notably a strong ache in the back of my brain, among other symptoms like light and sound sensitivity, tinnitus, nausea, tingling in extremities, etc.). I finally took the 0.3 mg Trileptal when the plane landed at 11 PM, but the symptoms only got progressively worse over the course of the night. My sleep was affected, and I currently still have the brain pain, tinnitus, etc. 

 

How should I proceed from here? Should I continue to take the 0.3 mg Trileptal at 7:30 PM and hope that I stabilize over the course of the next few days? As an aside, last year my normal dose of Trileptal was 4 mg; I once accidentally took a double dose (7 mg) and subsequently started reacting to the normal dose. After a week of trial and error I was finally able to stabilize by taking 10% (0.4 mg), which then became my new "normal dose." Should I try something similar this time around?

 

To summarize:

 

March 9th (typical day): 

• 8 AM: Wake up - low-grade tinnitus and brain fog (baseline symptoms)
• 9 AM: Breakfast
• 1 PM: Lunch
• 7:30 PM: Lamictal 35 mg, Trileptal 0.3 mg
• 8 PM: Dinner
• 11 PM: Sleep

March 10th:

• 8 AM: Wake up - low-grade tinnitus and brain fog (baseline symptoms)
• 9 AM: Breakfast
• 1 PM: Lunch
• 7:30 PM: Lamictal 35 mg
• 8 PM: Dinner
• 8:30 PM: Brain pain, strong tinnitus
• 10:30 PM: Brain pain, brain fog, strong tinnitus, light and sound sensitivity, tingling in extremities
• 11:00 PM: Trileptal 0.3 mg
• 11:30 PM: Brain pain, brain fog, strong tinnitus, light and sound sensitivity, tingling in extremities, nausea
• 3 AM: Sleep

March 11th:

• 6:30 AM: Wake up - brain pain, brain fog, strong tinnitus, light and sound sensitivity, nausea

 

Thank you so much for your help,

 

Emma

[Altostrata]

Tripleptal has a short half-life and must be taken on schedule. 

 

An upset like this, when you've taken a dose off-schedule, probably will settle down in a couple of weeks. Be sure to keep to your drug schedule.

 

Many of us will measure our doses out before a plane trip, so we can keep to our schedule according to the clock at home.

[Emma7855]

Thanks @Altostrata. So should I stick with taking 0.3 mg tonight at 7:30 PM?

[Altostrata]

Every day, take your drugs at the same dosage on the same schedule by your clock at home.

[Emma7855]

Got it, thanks.

[Emma7855]

Hi @Altostrata. I will be traveling to India for work and my doctor is prescribing me anti-malaria medication. I don't think I'll take it (I'll be taking other precautions), but in case anything happens I'd feel better having it on hand. I have a few options, each of which is taken a few days before the trip, during the trip, and then a few days or weeks after the trip:

• Atovaquone-proguanil (taken daily)
• Doxycycline (taken daily)
• Mefloquine (taken weekly)
• Tafenoquine (taken weekly)

 

Is there one drug that people in WD tend to handle better than the others? 

 

Am I correct in assuming that drug taken weekly would affect the CNS less than one taken daily?

 

My doctor has also prescribed me azithromycin in case I get traveler's diarrhea. Do you know anything about that as well?

 

Thanks for your help.

[Altostrata]

I have no idea, sorry. Ask your doctor which causes least problems.

[Emma7855]

Hello @Altostrata et al. I take Lamictal 35 mg and Trileptal 0.3 mg everyday at 9 am. I took both as usual this morning. However, for some reason that I don't understand, my body started going into withdrawal this afternoon, as if I hadn't taken my medication earlier. I feel absolutely terrible right now. Should I take another round of the meds ahead of schedule, like tonight or early tomorrow morning? Or just take them tomorrow at my normal time?

 

Do you know why this happened? How long will it take my body to recover from this? 

 

Thanks for your help. 

 

 

[Altostrata]

What do you mean by withdrawal? 

 

How are you taking your drugs? Have they been exposed to high heat? Are you using a liquid? How old is the liquid?

[Emma7855]

"Withdrawal" meaning the type of symptoms I used to get when I would forget to take my meds (though this hasn't happened in a few years): brain pain and fog, light sensitivity, feeling nauseated, etc.

 

No, nothing has been exposed to high heat. I take the Lamictal as 3 pills and the Trileptal as a pill that I crush in applesauce and then weigh out. I've been doing this for over a year now. It's possible I mis-weighed the amount. Not sure. 

 

A few days ago I returned from a trip abroad, and I was very careful to take my medication at the same time each day irrespective of time zone (aka every 24 hours). But maybe I messed up the timing at some point. Again, not sure. 

 

 

[Altostrata]

It's probably travel-related. You'll probably feel gradually better in a week or so.

[Emma7855]

Okay, thanks. I'll continue to take the medication at the same time each day and hope it's just a temporary setback. In general, I assume that if something like this happens again, I should just stick to my schedule and not change the dosage or timing of my medication? 

[Altostrata]

Personally, I have been unable to follow what you've done or are doing. One thing is for sure, if you take your drugs inconsistently, your situation is beyond peer support. If you want peer support, you'll need to establish a baseline symptom pattern associated with a stable daily drug schedule.

[Emma7855]

Hi @Altostrata, I was wondering if I could ask for your advice.

 

I am currently taking Lamictal 35 mg and Trileptal 0.3 mg. I was diagnosed with Covid on Thursday and was prescribed Paxlovid, which I need to begin taking tonight (within 72 hours of onset of symptoms). I feel miserable from the virus, and I want to do everything in my power to lower the risk of developing long-covid, hence why I'm considering taking Paxlovid. However, it decreases the plasma concentration of Lamictal; on top of that, I am still ultra sensitive to medications. 

 

What are your thoughts on whether I should take it? Thank you for your help. 

[Altostrata]

If I were you, I'd take Paxlovid without delay, do not take it at the same time as any other drug.

[Emma7855]

Thank you. 

[Emma7855]

Those of you following along: I took the first dose of paxlovid yesterday morning. After a few hours I started getting strong neurological symptoms -- brain fog, depersonalization, tinnitus, pressure behind my ears, pain in the back of my head, disorientation. I consulted a doctor, who said the new symptoms were most likely from paxlovid rather than covid, and suggested I discontinue it. I haven't yet taken the second dose, and I'm still on the fence about whether to continue. 

[Altostrata]

Sorry, cannot advise you about continuing Paxlovid. Strongly recommend you review adverse effects and decide whether potential Covid avoidance is worth the risk of adverse effects.

[Emma7855]

Thanks @Altostrata. I decided to continue taking it as prescribed, and yet I still developed long Covid a few weeks later, unfortunately. I just developed sudden hearing loss last night due to Covid, and I saw an ENT doctor today -- turns out the treatment is 60mg Prednisone for 1-2 weeks, followed by a series of Prednisone shots in my eardrum if the pills don't work. Should I be concerned about this?

[Altostrata]

We're not able to provide peer support for long covid here, we don't know anything about it. Please discuss the pros and cons of your doctor's recommended treatment in depth with your doctor. You will need to decide if the drug risks are worth potential benefits for your condition.

[Emma7855]

Thanks @Altostrata -- I appreciate your input. I spoke to my doctor about it and unfortunately, steroids are the only option. It will be a two-week course of Prednisone, starting at 60mg and ending at 20mg. I know this taper is not appropriate for those of us in PAWS. Is a source of information here on how best to taper off short courses of steroids? Thanks. 

[Altostrata]

You could ask your doctor for a more gradual taper, maybe 10mg at a time. But you might want to go off as soon as you can.

[Emma7855]

Thanks so much @Altostrata -- good idea. I'll ask her.

[Emma7855]

In an unexpected (yet maybe unsurprising) turn of events, the Prednisone actually exacerbated my hearing loss instead of improving it. I'm returning to the ENT doctor. @Altostrata, in case she recommends stopping it altogether, would you recommend stopping or tapering off? I just took one 60 mg dose last night. Thanks, and please forgive me for the recent influx of questions!

[Altostrata]

7 hours ago, Emma7855 said:

I just took one 60 mg dose last night.

 

You can stop it. Please take questions about drugs prescribed for your long covid treatment to your doctor.

[Emma7855]

Thanks @Altostrata. 

[Emma7855]

Update. I ended up having to take 60 mg of Prednisone for 5 days in order to treat the hearing loss. I went down to 50 mg yesterday, at the recommendation of my doctor, and shortly thereafter I started developing symptoms that seem to indicate withdrawal (anxiety, internal tremors, tinnitus, sensitivity to sound/light, lightheadedness/dizziness, sweaty palms, brain fog, brain pain, tingling in extremities, night sweats, "manic" feeling, feeling of being "drugged"). My doctor is open to my doing a slow taper, but she doesn't want it to last longer than 3 weeks. 

 

I'm wondering if I should just hold at 50 mg while waiting for the WD symptoms to subside, or possibly updose to 52.5 mg or 55 mg today. Thanks. 

 

[Altostrata]

5 hours ago, Emma7855 said:

I'm wondering if I should just hold at 50 mg while waiting for the WD symptoms to subside, or possibly updose to 52.5 mg or 55 mg today. Thanks. 

 

Are you referring to prednisone? Like other steroids, prednisone may cause adverse effects or withdrawal symptoms upon reduction. Please inform your prescriber of your difficulties with prednisone.