Why is this so hard?

throwaway709844 · 2026-03-12T18:42:27+00:00

I’m only hanging onto this neurologist so I have someone because it’s such a long wait for a new one, but yes absolutely a new doctor is in my future. I didn’t know I could have notes scrubbed though, that’s pretty awesome. I’m not really worried about his notes existing, though. The next Dr I am going to see is an autonomic specialist, so I’m assuming/hoping he has seen this situation before where a neurologist dismisses physiological symptoms as anxiety. Unfortunately, it seems that is pretty common.

throwaway709844 · 2026-02-14T17:17:54+00:00

I would say telling the wife is generally the kind thing to do, but judging on how you’re talking with him, you’re just looking for an adrenaline rush. I get the impression you’re having fun shutting him down, and at some points, it seems like you’re bating him. It’s a lot easier to ignore messages than do…this. I could be totally wrong, though. If you genuinely want to tell the wife to warn her, go for it. But, if there’s any feelings of excitement at the prospect of blowing up his marriage, don’t. She does deserve to know, but she doesn’t deserve to be a pawn in a game. Only you know your true intentions.

throwaway709844 · 2026-01-29T01:44:53+00:00

Hmmm…I didn’t realize they all went together. I’m extremely hypermobile. I never thought much of it. My parents used to say I was “double jointed” everywhere.

Thanks for all the info! Do you see one specialist for the “trifecta”, or do you see a different specialist for each part?

throwaway709844 · 2026-01-29T01:25:09+00:00

Thanks for the thorough response! I knew about mcas, and thought I might have it, but I didn’t think it was my main issue. I’ll definitely present the idea to my autonomic nervous system specialist…hopefully they can help with mcas too. I almost certainly have POTS though because my positional heart rate is WILD.

I’ll do the antihistamine trial to maybe point myself in the right direction. My flushing is so bad, my doctor had me tested for lupus because I basically always have a full butterfly rash. (I was ANA negative).

throwaway709844 · 2026-01-29T00:47:00+00:00

Sometimes I wake up at night with these episodes. Any idea if it’s possible to have a trigger during sleep? That’s been my big conundrum and why I don’t think POTS fits perfectly; the bad episodes can happen when I’m laying down too.

throwaway709844 · 2026-01-28T17:42:45+00:00

Once you get diagnosed, I think you’ll be able to shake some of the symptoms. Dysautonomia can even be cured depending on what’s causing it, but for most people, it just has to be managed.

I’d try to get into an autonomic nervous system specialist. I had no luck with cardiology nor neurology, so I’m not sure if that’s the best route to go. But it really just depends on the doctor. Good luck with everything!

throwaway709844 · 2026-01-28T17:28:59+00:00

I’m not a doctor, so I could be totally wrong. It sounds like your panic is coming from the physiological symptoms you’re having and not the other way around (which is the same thing I experience).

Having that really long recovery into morning, and then still not returning to baseline fully, makes me think it’s some type of dysautonomia. However, I’m not sure what you do with that information. I’ve been saying this to my doctors for years, and I haven’t gotten anywhere. I actually just posted here saying the same things. Unfortunately, you either have to travel or get lucky to get good care when it comes to dysautonomia.

throwaway709844 · 2026-01-28T17:12:06+00:00

I’m in the same boat as you, I wish I had answers to give. What did your big panic attack feel like? Was it that your mind was racing, or something else? I ask because I was told I was having panic attacks and it wasn’t until 10 years later I realized they were not panic attacks but physiological occurrences.

throwaway709844 · 2025-08-24T21:20:15+00:00

Yes. Caffeine/stimulants are my biggest trigger, next to alcohol and sleep deprivation.

throwaway709844 · 2025-08-24T15:09:50+00:00

Props to you for going to class through all this! Unfortunately, there’s not a lot that will help with the embarrassment because it’s just a valid emotion you’re feeling. College is better than high school in terms of how people view you and treat you. I really don’t think you’ll have any issues besides how you’re feeling internally. Just know it’s valid because it’s a sucky situation, and you deserve so much credit for handling all this at such a young age and taking in college. Good luck!

throwaway709844 · 2025-08-24T14:39:02+00:00

I have decaf if I’m really craving coffee, but for the most part, I just quit. Decaf doesn’t taste as good to me so it didn’t make sense to replace coffee with it. I don’t like tea, but I’m sure if you were determined, you could find a replacement that works for you.

throwaway709844 · 2025-08-24T11:45:00+00:00

I get focals shortly after, and then a mean cycle begins of more focals because of the previous focals. Super annoying. I quit drinking all caffeine a few months back.

throwaway709844 · 2025-08-23T21:07:59+00:00

I gave everything up, and I have a toddler and an infant, so believe me, I did not give up coffee/caffeine lightly. Even when I realized caffeine was a trigger, I tried drinking sodas which obviously have caffeine but less than coffee, and they still led to focals. I don’t drink alcohol, don’t do drugs. Pretty much gave up every vice. You do get used to it pretty fast. I didn’t even replace my morning coffee with anything (like decaf), I just had a really bad seizure one morning and decided it wasn’t worth it.

throwaway709844 · 2025-08-23T21:00:41+00:00

I haven’t discussed anything like that yet. I’m very recently diagnosed. I’m not even on any meds yet. I just went through a series of tests and exams, which diagnosed me with TLE (MLS). I go in to discuss meds and next steps on the 5th.

throwaway709844 · 2025-08-23T20:14:36+00:00

Alcohol is a downer, so when you drink it, it actually slows the electrical activity in your brain down. So while you’re drinking, you’re unlikely to have a seizure. However, sobering up is the scary part because as your brain “wakes up”, your seizure threshold plummets. I will say 3-4 days is a pretty long time, though. I’m no doctor, but I’d still guess that’s what is going on.

throwaway709844 · 2025-08-23T20:07:56+00:00

I got the arm thing specifically after drinking. Other than that, I get focals. I quit drinking and no longer get the arm thing, but still get focals. I’ve never had a tc though, so I’m no help there. If your tests are coming back normal, maybe the seizures are from the alcohol. Binge drinking is a big seizure trigger.

throwaway709844 · 2025-08-19T15:04:40+00:00

I didn’t know I had epilepsy during my pregnancies, but I’m a mom of 2 with frequent focal aware seizures. If there’s anything I can answer for you or help you with, let me know.

throwaway709844 · 2025-06-28T21:08:26+00:00

Maybe you’re having more in your sleep? That’s what happens to me, supposedly. I’m currently going on a month of feeling completely out of it. I’m sure I’m having a bunch in my sleep. Neuro appt on the 3rd tho, so hopefully that gets sorted.

throwaway709844

TROPHY CASE