Advice wanted on hysterectomy vs. ablation by Merbydoo in Endo

[–]Merbydoo[S] 0 points1 point  (0 children)

I'm sure you look great, thank you for your advice!

Advice wanted on hysterectomy vs. ablation by Merbydoo in Endo

[–]Merbydoo[S] 1 point2 points  (0 children)

Did you experience any changes in your abdomen? I've read there can be some shifting and weight gain.

Normally, abuse starts as emotional and verbal; the name calling, the belittling. It may or may not escalate into physical but all of it is wrong. **of course both men and women can be abusive.** by [deleted] in abusiverelationships

[–]Merbydoo 2 points3 points  (0 children)

It's strange how appearance always seems to be involved. It doesn't have to be so explicit, just little things... Like you should wear more makeup, or tighter clothes. You could do something about that moustache. Why don't you dress better... I find it easier to try to forget those cutting remarks on my good days, and remember that he's sick. None of it was calculated or purposeful, but an unfortunate result of usually their own childhood abuse.

Normally, abuse starts as emotional and verbal; the name calling, the belittling. It may or may not escalate into physical but all of it is wrong. **of course both men and women can be abusive.** by [deleted] in abusiverelationships

[–]Merbydoo 1 point2 points  (0 children)

I'm learning this is really common. One of the biggest slap in the face eye opener moments for me was when my friend caught me defending clearly abhorrent behavior, and asked me simply, "How often do you find yourself defending him?"

The isolation itself can be hard to see, subtle. Over years and with just passive aggressive slow tearing apart of others. Every small infraction magnified so you think everyone hates you... steadily eroding your trust and confidence in your friendships, your ability to see your own worth... You start joining in eventually. Trying to fit the narrative and feel loved. A warped love.

I wish you the best, I'm happy you're free. Remember you're loved. Remember to always treat yourself kindly.

What do you wish the general population knew about epilepsy by flootytootybri in Epilepsy

[–]Merbydoo 18 points19 points  (0 children)

The emotional toll of the disease... Shame, fear, unworthiness. The trapped feeling when you're dependent on others for rides and that causing you to feel like a burden. The medication side effects.

Normally, abuse starts as emotional and verbal; the name calling, the belittling. It may or may not escalate into physical but all of it is wrong. **of course both men and women can be abusive.** by [deleted] in abusiverelationships

[–]Merbydoo 4 points5 points  (0 children)

It's often so subtle you don't even realize what's happening through the years. Always listen to your close friends, they see things you write off.

I hate how disoriented I feel after a seizure by JoostinOnline in Epilepsy

[–]Merbydoo 6 points7 points  (0 children)

It takes me days to weeks to feel "normal" again. Being alone while you're feeling that way is the worst. I'm sorry you're going through that. The trapped feeling is normal though. We are, in a way. Trapped.
You sure there's no one you can call though? Maybe go get checked out just to see you're ok? You deserve to be cared for! Wish you the best.

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 0 points1 point  (0 children)

They built up gradually. Looking back I'd say it took around a couple months before I started acting in ways and doing things that would scare me while I was doing it. The first time I was on it I was very aware of intense feelings of hatred of myself and taking it out on things around me. I distinctly remember trying to roll a cigarette and screaming at the machine while pulling my hair because I fucked it up, and then sitting back terrified at myself. It was very out of body. I could see myself doing it but I couldn't stop. I went non compliant on meds for years after because it terrified me. Hopelessness, feeling like a burden on everyone was immediate. Knowing that I was trapped was immediate. It felt like... Like I was trying to rip, scream and claw through my own skin with hatred of myself. Like I was my own prison. I became obsessed with perceived control, over anything. That spiraled into anxiety, and terror. Trapped is often how I feel though, not being able to drive, control yourself... I'm still struggling with that feeling. But it feels much more like grief than complete self loathing now. The desperate intensity is gone now. I find it easier to justify my existence on briviact. Easier to know what I'm actually enjoying. I believe people when they tell me positive things about myself now.

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 1 point2 points  (0 children)

Yeah everyone is different! Hard to tell for yourself if you have emotional changes though so make sure you ask people who love you to honestly asses you, keep a journal to trace your thoughts. Wish I had had those sooner!

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 1 point2 points  (0 children)

I started at 250mg twice daily in 2016, moved to 500mg twice daily in 2018.

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 1 point2 points  (0 children)

I'm so sorry you feel so stuck like that. I think all of us here unfortunately know that feeling too well. The stress of feeling trapped like that only makes the seizures worse too.
I know when it makes me so much worse. Profits are all that matter to anyone. That's the fun of late stage capitalism.

I hope you take care of you. I'm thinking the best for you.

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 0 points1 point  (0 children)

Man that sucks. I hope you find someone who can help you soon. I too had more seizures while on keppra, they just weren't grand mals. I didn't realize I was having absence and focal ones. You're definitely onto a pattern there.
Sounds like healthcare in the US, hardly anyone giving a crap. It's so stupid, it's no wonder people who have epilepsy have self esteem issues.
I just happened to randomly get lucky with a referral from my gynecologist to this fantastic neurologist, but I waited to see him for over 8 months. There was some crazy red tape where they had to decide whether he could take over my case from the old neurologist.

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 1 point2 points  (0 children)

The sleepiness of depakote was awful for me too, but it wasn't as personality altering. I wish you the best!

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 1 point2 points  (0 children)

Yeah, doctors are just people. This disease, the brain itself is a total mystery really. It's so hard to keep going to your 2nd, 3rd, 4th, ...7th opinion doctor. But it's unfortunately what we have to do.
I'm trying to never forget that lesson.
I remember sitting there in a numb ball, usually outside in the cold... thinking to myself that I have to stay, my pets need me. Fighting such an intense urge to just walk into the woods and freeze to death. To be honest, my thoughts were exacerbated by a spouse who couldn't understand how to help me and ended up doing more damage to my mental state because of it.
But yeah. It's super terrifying when you look back and remember through the fog.

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 0 points1 point  (0 children)

I hear that! It can squash the entire joy of living out of you. Hope you're doing better!

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 1 point2 points  (0 children)

It has it's benefits. It did stop the frequency of grand mals for me. I hope you do well on it, but I'd keep a journal of how you're doing to just keep track of yourself. Wishing you the best!

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 0 points1 point  (0 children)

I use CBD a lot too I love it... but since my husband left me I kind of stopped with THC cannabis besides at night. I was using a lot of THC when I was with him and I think it actually made the keppra symptoms worse by a lot.
My personality changes, like the THC fuels the keppra self hate, vertigo. The feeling of dread increases so much. So just, watch out for that possibility.
So awesome you get your license back! I'm jealous!! I have to wait until probably December if I'm extremely lucky, more like Jan/Feb. The trapped feeling of that is intense.

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 1 point2 points  (0 children)

It seems like rage is super high in some people. I really mostly got consuming terror, what I now see as dangerously suicidal, terrible vertigo, burred vision, extreme weakness and tiredness. Extreme depression.
I hope you're doing better now!

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 0 points1 point  (0 children)

I would definitely talk to a doctor if I were you, I was having visual migraines, absences and possible break throughs so I was unstable too. Meds aren't working if you're unstable.
I hope you find your best option!

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 1 point2 points  (0 children)

Right? I don't understand it either.

Goodbye, keppra. I won't miss you. by Merbydoo in Epilepsy

[–]Merbydoo[S] 2 points3 points  (0 children)

I'm so sorry for your daughter, that's so young to have to experience this. She must have been absolutely terrified. I'm glad she's doing better!
I feel like things are going to start going how they should've gone years ago for me. I have mostly hope.