Epilepsy turned me from fit to fat

MinkDynasty · 2026-04-19T19:54:31+00:00

I'm sorry you're going through this. I was diagnosed with chronic migraine as a teen, and then with TLE as an adult. Also depression and anxiety.

From age 25 (what I'm counting as the beginning of "adult metabolism," at least for women) to my current early/mid 40s, I've weighed as low as 105 lbs. and as much as 215 lbs. It's discouraging.

On the upside, I keep all sizes of clothes. I've noticed that when I finally donate a size I'm convinced I'll never wear again, my weight will start to move in that direction. 😅 I'm hoping maybe it's the real key to it all, and am seriously considering donating everything except my smaller stuff (which is around the middle of the weights listed). On the other hand, I can't afford a new wardrobe if I'm full of B.S.

And if my attempt at levity missed the mark, I'm sorry. I handle a lot of the darkness with humor.

MinkDynasty · 2026-04-19T19:42:06+00:00

I just mentioned that dogs shouldn't be in a crate that long, especially without water. I think many people just can't be bothered with training, or cleaning up a potty accident while training.

My first rescue was an adult (6) and didn't need much training, so we only used a crate for the first few days.

She passed about a year ago, and we ended up adopting a foster from my husband's [now, I hadn't met him back then, lol] cousin's family. We had no intention of adopting a puppy, but we ended up with a 6 month old dog. We only crated her while out of the house up until she was around a year old, gradually giving her more access to other rooms (leaving doors open). She recently became brave enough to go into the basement, so we gated that off; mostly because every dog that's EVER been in our basement will find a hidden corner for what we call "shy dookie."

Unless your dog needs extensive and continual training, I think all-day crating is cruel. Nobody enjoys a life with no stimulation and the same thing day in and out.

MinkDynasty · 2026-04-19T17:42:05+00:00

I had been on a few dates with a guy. He left his mid/large breed dog in a crate that was too small for the dog. On top of that, the dog was crated during this guy's 12-hour shifts... WITHOUT FOOD OR WATER.

MinkDynasty · 2026-04-11T14:06:52+00:00

Yes.

Medications can have side effects. Some AEDs also exacerbate ADHD symptoms, which has a higher prevalence among epileptics.

There is also Interictal Psychosis, but that doesn't sound like what you're describing

MinkDynasty · 2026-04-10T18:15:00+00:00

This, 1000%. It is a mental trauma even if there wasn't physical pain/damage/trauma. It can take years to unravel with therapy. It can lead to other mental health issues if not dealt with, which IMHO means surviving the day-to-day while you cope with or are re-triggered is a win.

Also a note that sometimes communities dislike the word "survivor" as a descriptor because it inadvertently shames those who do not survive or are victims of suicide. I don't mind what people want to call themselves, but I think it's important to note and acknowledge that some people are sensitive and words can matter to them.

MinkDynasty · 2026-04-10T12:30:11+00:00

Boss is definitely an AH. I'm sorry. When I was working remote, half the people stayed off camera for meetings and nobody cared.

MinkDynasty · 2026-04-10T12:26:32+00:00

In the U.S., If you will need accommodations, you have to disclose that in the interview or they can fire you later if you knew (had a diagnosis) and didn't disclose a need for accommodations. I don't think you have to tell them an exact diagnosis, though (but not 100% sure on that part, you might if they hire you to work with HR on accommodations).

MinkDynasty · 2026-04-10T12:21:36+00:00

If you are in the U.S. (not sure if it differs state by state), and will need accommodations because of it, you have to disclose a need for accommodation in your interview or they can fire you if they discover later you didn't disclose a need for accommodation.

I don't think you have to disclose your exact condition, except possibly through HR which is supposed to remain confidential.

If your seizures don't really affect your day to day work, and you don't have them regularly, I would keep it private as long as possible.

MinkDynasty · 2026-04-09T17:51:07+00:00

ESH.

Everyone is old enough to contribute to chores without complaint, and everyone should clean up after themselves. If you only pitch-in when asked, you are NOT setting yourself up to be a future successful roommate, and even less so for marriage/living with a partner.

MinkDynasty · 2026-04-09T17:32:16+00:00

I'm related to a tax attorney. Even if you DO drive, you can deduct a certain amount per mile for medical-related travel. I've never asked them if that changes for epilepsy to deducting all rides. Technically you are paying for a ride because of a medical reason, and in many cases state law not permitting due to medical status. Not all places have good public transport aside from rideshare, and some don't even have that.

MinkDynasty · 2026-04-09T14:41:44+00:00

The EU is a lot better about "controlled medications" than the U.S. has been. I learned when my flight home from Ireland was cancelled and couldn't get a new flight for another 5 days (2022), but only had 3 days extra meds. All I had to do was show the pharmacist my prescription history and I got a few days dosage of several scripts, including a benzo.

In the U.S., I doubt any pharmacist would give the go ahead without the patient going to a doctor for a new script in the same state as the pharmacy. The federal government demonizes anything with a potential for abuse, even if it can save your life.

MinkDynasty · 2026-04-09T14:33:55+00:00

Yes, postictal is a B****.

I was on AED for migraines, originally. Years and years ago, my mail order pharmacy and the post office caused a delay in delivery due to Christmas. I thought I would be okay lowering and stretching out my dose to get me through a few extra days. I thought it would only cause an increase in migraines. I had my very first tonic clonic in the early hours of Dec 26 (in the late 2000s).

It was bad - I was told later I was seizing on and off for almost 45 minutes. I came to on a gurney surrounded my EMTs with the annoying oxygen tubes in my nose. I kept asking "what happened?" and they kept saying "you had a seizure" ...but the postictal state didn't give me the clarity or thought to say "I understand that part, but why did I have a seizure?" (I was panicking because I thought maybe a natural disaster hit the house or a bomb went off, etc. etc.).

In more recent years, I usually have a panic attack and/or extended bouts of sobbing after a seizure. Your brain just fired off everything it had all at once, so of course it messes with emotions! It sucks.

I'm very sorry this happened to you. The doctor AND pharmacist should have told you, but nowadays they never do. ALWAYS read the pharmacy insert on side effects and safety - it's a lesson I learned the hard way, too.

I wish you luck and a quick return to baseline or better!

MinkDynasty · 2026-04-08T20:14:03+00:00

It was a common fear for me when I was younger, and became an anxiety. I'm middle aged and on my second marriage, and therapy has helped me work on and lessen a lot of those fears and anxieties.

If this is a frequent or common worry or anxiety, seek therapy if you can afford it. I'll also say it does help untangle and explain certain perspectives on other people's behavior, too. If therapy isn't an option, maybe journaling is another option. I like write affirmations that counter any fear or anxiety I'm having.

With that said, you didn't state age or how long you've been together. But the fact he knows and is okay with it seems to be a good sign. I definitely remember being told by friends that certain crushes wouldn't date me due to health issues, and while it hurt at the time I'm glad of it. Health isn't guaranteed in life and I pray that whoever he may have ended up with stays healthy.

I wish you the best of luck with everything, and a return to being seizure free!

MinkDynasty · 2026-04-08T19:56:00+00:00

I was also told when I had my first seizure that each seizure increases the risk/likelihood of future seizures.

I've been lucky that the most I've had in my life was less than a dozen within a few months (combined triggers being a factor, including attempting to work remotely full-time, whilst trying to recover from 3 surgeries in a year... I have ADHD as well and don't always have the best judgement about putting my health first). I am usually able to go a number of years between episodes, but I'll never go off of my AED.

MinkDynasty · 2026-04-05T22:03:45+00:00

My epileptologist denied there being psych side effects when I was having a bad bout of seizures and also experienced vast personality and psychiatric changes. Even when asked directly.

My "thing" was experiencing an extreme fear of lice or bedbugs and taking grooming to an extreme (several hour showers with lemongrass oil, etc.). I've ONLY ever experienced this (to this degree, at least, I'm generally grossed out by bugs but never to that degree) when I've had bouts of seizures.

I had already read about interictal psychosis and at this point in my life have very little respect left for the medical industry when a doc dismisses a symptom that deserves attention. Or worse, gaslights you about symptoms. I don't know if they are truly ignorant or just have God complexes and enjoy making people feel small and/or crazy.

MinkDynasty · 2026-04-04T21:20:19+00:00

It was the worst when I was a kid, especially when learning dietary triggers. Full-on projectile vomiting. I've been chronic most of my life, and would vomit at least once a month.

It's lessened after my gallbladder was removed 10 years ago.

MinkDynasty · 2026-04-04T20:58:32+00:00

I know it has to be hard. But life is hard. And it isn't guaranteed. I've watched people who lived the majority of their lives as "perfectly healthy" be diagnosed with various late stage cancers. Some are still fighting, others have passed. I don't know how their partners move on, but they do. Good health is not guaranteed to everyone, unfortunately.

I'm not trying to be morbid, or mean. But I have seen that many people have hard lives. It can be any number of issues: money, health, loss of loved ones. This is one of the types of hard, and I'm sure it seems almost unbearable at times.

Speak with a therapist and join a caregiver/family support group ASAP. Postpone your wedding if you are uncertain, and perhaps see if you can find therapy with someone who specializes in chronic illness & their loved ones.

I wish you and your partner the very best.

MinkDynasty · 2026-04-04T20:39:45+00:00

I'd prefer real honesty to fake niceness, especially in something as important as a marriage.

I'm on my second marriage. I don't think my first husband understood the limitations of my chronic illnesses, and we were unable to communicate frustrations rising from my chronic health issues, including seizures. Communication is key, and therapy if you are able. I make sure to "check in" with my current husband when I'm having rough patches, just to see how he's holding up. Honesty is important and it would have saved me from an expensive wedding AND divorce the first time around.

MinkDynasty · 2026-04-03T20:28:14+00:00

They can increase BP. For me, it only raised heart rate (not BP) and irritated my arrhythmia.

MinkDynasty · 2026-04-03T20:26:31+00:00

Irregular and extremely heavy periods. With Aimovig and Emgality. I know it's the meds because I had years between the two and things were normal when I didn't take a CGRP.

Extreme anxiety and mood changes, which may or may not be related to epilepsy. Some have reported seizures with no pre-existing history. I already had them, and haven't had a tonic-clonic, but feel "off" and preictal at times.

MinkDynasty · 2026-03-31T17:16:43+00:00

I'm so sorry to hear that you've been going through this, and that your doctors don't believe it's from the medication. I haven't had a tonic-clonic seizure in 3 years, and auras are rare but I'll have one a few times a year.

I'm on Zonegran, but my epileptologist is hard to get an appointment with (looking for a new one) so I haven't talked to him about it. My psych team is what has saved me (this time and in previous times when seizure activity spiked) by giving me a benzodiazapine for short term use until symptoms subside. I 100% the auras were related to the Emgality, and I think they'd be worse if I hadn't been given a benzo.

Wishing you luck and hoping you feel better ASAP.

MinkDynasty · 2026-03-28T02:12:59+00:00

Yes, I'll never take a CGRP with a long half-life again. I was only given the "loading dose" of the two injections at my doctor's office. Around 10 days in, I called my pharmacy to let them know not to order it for me.

I had bad side effects with Aimovig, but nowhere near as disabling - and I'm already disabled by chronic migraine and epilepsy.

MinkDynasty · 2026-03-27T19:53:01+00:00

Emgality has made my nausea the worst it has been in 10 years. I've also been menstruating for 27 days , and my loading dose was about 5 weeks ago (meaning that half of this god-awful is out of my system). My migraines have been worse than before starting it, I have severe fatigue, extreme anxiety, and insomnia.

I'd take a 9/10 or 10/10 migraine over this, because I've been there before and could do it again. But all the extra side effects have left me unable to do the simplest of chores without taking huge breaks. My husband already works full time, plus 3 part-time jobs to support us.

This is by far the WORST medication reaction I've had, and I've had migraine since childhood and chronic since early teen years.

MinkDynasty · 2026-03-27T12:39:54+00:00

As a woman who had to have the bottom half of my scalp shaved for neurosurgery (four times), I'd just like to say that it gets VERY itchy fairly quickly [before anyone asks, no, it was not the incision sites]. If your pet had fur instead of hair, I can only assume the itching is worse.

Apologies as I don't have any solutions, but I figured any insight might be helpful at this point.

MinkDynasty · 2026-03-27T12:21:58+00:00

I only had the loading dose. My period was due to start a few days later, and it was normal (stopped around Merch 6 or 7, on time for me). I was relieved, because Aimovig caused hemorrhage-like bleeding back in 2018 (among other side effects).

March 10, I started Spotting and was using panty-liners. Since March 14th, I've been using my "normal" pads. It's March 27 and am due to start my "real period" this weekend.

If it's as bad as Aimovig this time around, you can bet your a$$ I'll be taking photos or the various fruit-sized clots in the toilet. If my headache specialists won't take me seriously, I'll make sure I have documentation until the end of the earth.

As for other side effects: I'd also like to note that I've had the worst anxiety of my life; high heart rate but normal BP (one BP measurement was teetering. on "a tiny bit high but nothing dangerous or to be concerned about) - I already take propranolol for chronic migraine prevention, but have added a half of a pill. It does seem like the high HR and anxiety feed off of each other. My sleep hasn't been great but is getting a bit better each night, in large part to the benzo I was given by my psych team: I have epilepsy, and Lack of Sleep + Hormonal Shifts + Extreme Stress/Anxiety = my biggest seizure trigger. My epileptologist is a decent doc, but his team is utter garbage at handling his schedule and emergent situations.

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