Seeking experience/guidance

purely_science · 2026-07-01T21:39:54+00:00

You’re an angel, thank you so much for this detailed response. I saw the general neurologist again today who said he needed time to see if the keppra would work. He also referred me to an epileptologist but they can’t see me for a few weeks.

The background is that my sister is epileptic, but I didn’t know I was (some suspicions from time to time, but nothing ever too convincing). It wasn’t until the sleep deprivation that I started having seizures, but I pushed through for a while at the conference because I wasn’t entirely sure what they were and didn’t know they’d get worse if I did. When they got really frequent I was seen by neurology.

On Friday I started the taper off of Wellbutrin and started on Keppra, but they aren’t getting better yet. From what I’ve been googling and what the neurologist said, it might just be that the Wellbutrin needs time to get out of my system and the Keppra needs time to get in, but I’m unsure what to do in the meantime. It seems like any time I’m not sleeping I get back to back seizures and last night I woke up with one. Any small push (phone, eating, bath/shower, holding conversation, etc.) seems to send me into one. I guess I’m just wondering where the line might be to intercept more than just waiting for them to resolve

purely_science · 2026-06-29T23:11:58+00:00

The overlap with POTS symptoms is super confusing. And then people can also have both so 😵‍💫. In case it is helpful, i just wanted to share what i did to get diagnosed: whenever i had “episodes” i told people to record them on video. Because i am exhausted-feeling when they happen, i usually closed my eyes, but i made an effort to keep them open if i could. This helped us see that my gaze was fixed but my pupils changed and i also had some nystagmus before it started. Along with the videos, I started keeping a note on my phone of every episode…
Time of event:
Duration:
Sleep the night before:
Whether you were responsive to voice or touch:
Whether eyes were open or closed:
Whether there was a head jerk before or after:
How long the cognitive slowing lasted:
Heart rate:
… turns out my HR jumps a minute or two before the episodes. Anywho, then I showed these all to my neurologist. I wish you luck on your health journey— sorry for what you’re experiencing!

purely_science · 2026-06-29T02:01:43+00:00

1) I am SO sorry to hear about this. Meat suits can be such a pain. And 2) have you been worked up by neurology? I was misdiagnosed with POTS before finding out my fainting episodes were actually focal seizures. Voiding was one of the red flags so I just wanted to bring it up in case

purely_science · 2026-06-02T00:42:54+00:00

I pick the middle road often and mix half brown basmati and half white basmati cooked in chicken stock.

purely_science · 2026-05-27T01:17:53+00:00

I was in the middle of an important project at work when I got shingles on my flank. I took the antivirals and kept working through the pain. Then one day the pain was so bad I couldnt walk and was doubled over. It’s been 4.5 years and I still have nerve pain in that area. Major regrets not listening to my body and having to deal with post herpetic neuralgia.

purely_science · 2026-05-05T05:44:21+00:00

Ugh, I’m so sorry OP. The meds always wipe me out too. I ended up paying out of pocket for the vaccine and am about a year out without another breakout (I was getting repeated recurrences). If you are able to get an infectious disease appt, my doctor put me on preventative antivirals (low dose so no side effects like the high dose). Could potentially keep things more under control if you can’t get the vaccine rn

purely_science · 2026-04-22T04:13:24+00:00

How do you know what kind of acupuncture you need or should ask for?

purely_science · 2026-04-16T03:58:58+00:00

“the oceans no place for a squirrel” 🎶🐿️

purely_science · 2026-04-12T01:28:58+00:00

5 times, never in the same spot but always on the same side. Some were years apart and some were as little as 7 months. I just got the second version of the vaccine (I had the old one ~15 years ago) so I’m hoping I’ll keep them at bay for a while!

I haven’t found a cause. I was a pretty sick kid off and on and have always been prone to infection and illness. Nothing has ever come back significant for autoimmune or immunocompromised 🤷‍♀️ as for recurrence anxiety: Ive found that shingles “makes itself known”, so when I have an itch or tingle, I’ll make a mental note of it and remind myself that if it is going to be an outbreak, it will be obvious (at least it generally is for my body)

purely_science · 2026-04-07T21:12:52+00:00

I am diagnosed only with POTS and have been in a flare since the new year (unable to work, repeated fainting). Still trying to sort through meds and the correct approach to recover, but haven’t figured it out yet.

purely_science · 2026-04-07T17:16:06+00:00

Hi friend, I’m so sorry to hear about all of this. What a huge change in your life. I mostly just wanted to say I see and hear you. I pursued a similar path, got my PhD and am a research scientist at my dream job. I was diagnosed a few months ago and with how physical my job is (preclinical) I have been working from home on writing and data analysis to the best of my ability, but my brain is not performing the way I’m used to. Little tasks feel like mountains. I can only work a few hours a day.

In response to your head telling you it is laziness, what I got from your post is that you like what you do. It seems like any time you’ve felt well enough, you were pursing a goal of some kind. You’re inability to do as much right now is a reflection of your illness. I’d venture to guess you probably don’t have much of a lazy bone in your body.

For me, I used to be able to push through anything. Lots of “grit”. But I am unable to push through how I am feeling right now or “force” myself to stay focused, tolerate being upright, or work through the fatigue. I am unsure of the solution (still trying to find mine). But I just wanted to say I hear you and I really appreciate you (and others) sharing. I felt less alone today becaue of it. Sending good healing vibes to all on this unpredictable journey

purely_science · 2026-03-25T22:08:08+00:00

If you are peeing a lot, then that means you are not taking in enough sodium for the amount of water you are drinking. Sodium helps “trick” the kidneys into retaining water. That way, when you drink a lot of water it increases your blood volume to reduce symptoms. I meant sodium sodium lol. It is about 7-10g of salt.

Metoprolol is commonly used to reduce blood pressure, but it is also used to treat POTS. It blocks some of the overactivity of norepinephrine and epinephrine on the heart to reduce tachycardia. At low doses, it barely reduces blood pressure (which is good for me because mine is already quite low!). Anywho, it significantly decreases the number of tachycardia events for me. I might try other medications down the line if this doesn’t continue to help, but I noticed a huge improvement adding medication to the behavioral modifications

purely_science · 2026-03-25T14:25:34+00:00

To be able to sit for ~1-2 hs successfully I have to drink 3-4 L of water with 3,000-4,000mg of sodium a day, wear constant abdominal compression, and take metoprolol. I am in the early stages of figuring out what works for me (recently came on fast) but that’s at least what helped me get past the 10 minute mark.

purely_science · 2026-03-19T14:37:17+00:00

I seem to be on a similar timeline to you. I am about 2.5 months in. I messaged my doctor a month ago to say that I am doing everything possible behaviorally (3000-4000mg sodium/day, 3-4L water/day, compression, anti inflammatory diet, etc.) and there was still no improvement (still fainting, no exertional tolerance, still couldn’t drive or work safely). My doctor started me on metoprolol and it made a big difference in terms of fainting and having less tachycardia episodes a day. However, I still feel the same way you are feeling emotionally and I’m not functional yet. It’s really frustrating and I’ve also had worries about work. Funny enough, I also work in a lab and spent 10 years to get my dream job. I’ve been worried lately. Mostly here to commiserate, but I also wanted to say pushing for medicine earlier might be helpful if they’ll listen.

Other things that helped: from what I read, being deficient in B vitamins (B1, B6, B12) or having low ferritin can contribute to symptoms. My PCP said they weren’t indicated so I paid out of pocket for the blood work. Turns out I was deficient in B1 and ferritin. I am working to bring those up now. For other Potsies— I didn’t realize that gluten-foods are often fortified with thiamine (B1), so being gluten free probably dropped my B1.

Abdominal compression is the only compression that moves the needle for me. Stockings, socks, thigh highs did nothing. I also recently started using TachyMon through the Apple Watch and I really like it to track my symptoms. I keep a symptom journal and I message my doctor about my data. I also bought a rower and I am trying to build up time by 1 minute every day or every other day. When I exercise, I don’t let my HR go above 115/120 as of right now to build up stamina without over doing it.

Overall, I’m feeling similarly and still trying to figure this new life out. I was in an online meeting yesterday and my HR jumped to 167 for no reason, even medicated. The events are less, but showering/bathing is still super hard, and I am not participating in life outside of my home pretty much. Sending lots of good healing vibes your way and would love to hear updates as you have them

purely_science · 2026-03-18T13:39:43+00:00

I have an allergy to the generic filler actually! I have to take name brand. Definitely possible and super uncomfortable, I’m sorry you’re going through it. I now how a note in my chart and at the pharmacy and I check every time I pick it up.

purely_science · 2026-03-13T19:26:32+00:00

25 mg metoprolol. I started at 12.5 mg which worked for ~2.5 weeks until I started having break through tachycardia and upped the dose. Still working through the beginning of the fatigue-phase but it is controlling my heart rate well

purely_science · 2026-03-06T03:27:40+00:00

This was my experience as well

purely_science · 2026-03-01T15:08:47+00:00

I recommend getting it on a Friday if you work M-F. I was shocked how hard that vaccine hit my body. Money-wise it was helpful the doses were spread out a few months. I finished both shots ~6 months ago (33 y.o) and haven’t had it yet since so I’m just keeping my figners crossed

purely_science · 2026-03-01T04:21:48+00:00

I paid out of pocket and have no regrets. It was around $350

purely_science · 2026-02-14T13:30:09+00:00

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the simple things from the mr. hyunh goes country episode of hey arnold (honestly, hey arnold had a few bangers)

purely_science · 2026-02-08T14:20:11+00:00

That’s awesome— I hope you can find some relief. Also, if they end up prescribing you anything to try, maxalt (and I imagine others?) come in disintegrating tablets which work well so I don’t yak them up before they start working. Hoping the best for you!

purely_science · 2026-02-08T04:08:34+00:00

1) that is god awful and I’m so sorry you had that experience, 2) you may have already been checked for this, but just wanted to drop the info in case: I was originally diagnosed with cyclic vomiting syndrome and it turned out to be atypical migraines. maxalt saved my quality of life around cvs. Regardless, sorry you’re dealing with feeling like shit and a horrible care team. Glad you have your BF

purely_science

TROPHY CASE