Does anyone else experience an increase of flare activity, neurological, or flu-like symptoms / inflammation in relation to their cycle? I’ve begun to find a slight correlation that might be hormone-related but I’m not entirely sure due to overlap. The Menses and Luteal phases are probably the worst— it’s when I feel the “sickest” (along with the usual menstrual symptoms) but when it’s over? It’s honestly night and day when it comes to my tolerance, mood, and overall health.

Is there anything/tips I can do to manage those weeks better? Should I check with an endocrinologist? or is it just something to deal with?

I know “brain zaps” are a phenomenon mostly used to describe antidepressant withdrawal but I’m wondering if anyone with neurological sjögren’s involvement experience something quite similar? I’m not on any antidepressant but experience what feels like an occasional buzz— it’s like a brain stutter. Doesn’t hurt and nothing happens when it occurs other than me being startled when I feel it LOL

It’s not exactly the same as when you get chills but that’s the closest thing I can compare it to. Sometimes rather than all over it’s isolated to a single part of my head— a small wave and then it’s over. Pretty weird

Hi everyone. Around 2 months ago I was diagnosed with a seizure disorder after a 3-day at home AEEG was conducted. It took a few appointments to gain clarity on what my diagnosis actually *was* which turned out to be “complex / generalized seizures”. I was a bit surprised at this information due to the criteria to fall under that category, but apparently it’s what my neurologist confirmed based off what she was looking at. I heard one of the main hallmarks of these seizures are impaired awareness but i in-fact experienced nothing of the sort? I even have a family member that monitored me throughout the 3 days and she can also agree I didn’t experience that level of impairment.

Now on one of the days, I *did* experience an event similar to pre-syncope. I spent 30 mins in the heat and maybe another 30 standing for a prolonged period (while possibly dehydrated) that caused a fainting like spell that put me on the couch with elevated legs, internal lower body/thigh twitching (not rhythmic) and fatigued till the next day— it was super sudden! Throughout everything though I maintained a normal blood pressure and communicated clearly despite feeling so severely off and ready to pass out. Never once did I lose consciousness, experience confusion, or muscle jerking… So once again it left me confused on my current diagnosis. I’m new to what these are supposed to look or feel like and currently have no listed cause to my seizures. I mostly chalk up what I’m experiencing to be auras at most that last up to hours or more with a headache which I’m beginning to feel like it might belong in the migraine category (though I’m aware of the seizure and migraine overlap). Either way I was immediately prescribed 200mg of Lacosamide/Vimpat daily after the appointment and have been on it since cause I don’t want to cause anymore issues…

Important to note:
Not shortly after this, I was diagnosed with Sjögren’s… now I’m thinking all these symptoms and sudden crashes were related to my autoimmune condition which can manifest itself neurologically. The ASM might be helping in that regard but not because I’m epileptic. My current neurologist is not well equipped to answer my current questions so it’s left me seeking a second opinion for all of this as it’s very small practice…

TLDR;

Might be a misdiagnosed epileptic due to autoimmune disease. My AEEG symptoms don’t necessarily match what I was diagnosed with. Wondering if Complex/Generalized seizures can manifest without impaired awareness or muscle jerking? or should I trust my current neurologist on this diagnosis…

Would like to hear anyone’s thoughts/opinions!

I’m not too sure on where to start but i’m curious if anyone else takes Hydroxychloroquine (Plaquenil) alongside Lacosamide (Vimpat)? I just started HCQ at 200mg daily and have been on 200mg Lacosamide daily for around 2 months now… I’ve quite literally just begun HCQ treatment but i’m worried about possible side effects. My neurologist brushed off the idea of loss of effectiveness or interactions with HCQ saying that “my body will tell me if something’s wrong” (not very reassuring for me!)

I keep waking up in and out of sleep with a sort of heaviness and feeling that’s mimicking low BP but my personal cuff reader says it’s normal (hard to tell if it works well though). Not sure what’s nausea or just anxiety.

I’m sorry if this is all over the place, had no idea if these should be separate questions or not! I’ve elevated my legs and I’m trying to get back to sleep but I keep waking up so it’s all very disorienting and i’m wondering if this lightheaded/faint-ish feeling will go away after i adjust to the HCQ or if it’s because of my overlapping medications. Just wanna avoid a useless ER visit and wondering if a cardiologist referral would ease my worries in the long term lol

Hey everyone. Just started HCQ yesterday and i’m wondering— what are the most common side effects/experiences in relation to when *you* first started? Anything level out or go away after the adjustment period? Already I’m experiencing some trouble staying asleep, Low BP-like feelings, but I’m not too sure if that’s due to my other medication or anxiety. Initially when it was kicking in, I had a bit of an isolated leg cramp in my calf while sitting, along with tingling/burning(?) sensations along the scalp and arm. It was weird but nothing alarming or painful. Is there anything I should look out for? l didn’t have any initial dizziness or nausea but that could be cause I made sure to take it with a meal. I can understand the queasy feeling as it showed up a bit later.

I’m trying to stay positive and not scare myself out of the whole thing haha but adjusting to new medication is always a struggle cause I’m too obsessed with every little thing

I’m not too sure on where to start but i’m curious if anyone else takes Hydroxychloroquine (Plaquenil) alongside Lacosamide (Vimpat)? I just started HCQ at 200mg daily and have been on 200mg Lacosamide daily for around 2 months now… I’ve quite literally just begun HCQ treatment but i’m worried about possible side effects. My neurologist brushed off the idea of loss of effectiveness or interactions with HCQ saying that “my body will tell me if something’s wrong” (not very reassuring for me!)

I keep waking up in and out of sleep with a sort of heaviness and feeling that’s mimicking low BP but my personal cuff reader says it’s normal (hard to tell if it works well though). Not sure what’s nausea or just anxiety.

I’m sorry if this is all over the place, had no idea if these should be separate questions or not! I’ve elevated my legs and I’m trying to get back to sleep but I keep waking up so it’s all very disorienting and i’m wondering if this lightheaded/faint-ish feeling will go away after i adjust to the HCQ or if it’s because of my overlapping medications. Just wanna avoid a useless ER visit and wondering if a cardiologist referral would ease my worries in the long term lol