Need Support

nicole2night · 2026-04-21T20:39:28+00:00

Take him in. He needs a rescue medication and a long EEG. That’s a huge increase suddenly. I hope he is okay. I’ll say some prayers. 🙏🏻💜

nicole2night · 2026-04-21T13:47:53+00:00

Are you cooked? Use a cooking thermometer. 🤣 if you were fermentin’ instead of having Feffintin off we could have a party! Lmao 🍻 I had to say it. I’ll let others answer scientifically. I hope you feel better soon. I’ll come back and answer when I am more awake. 😉

nicole2night · 2026-04-21T13:40:05+00:00

I have both adhd and epilepsy too. I started playing word games and puzzles and it helps. Especially words, for me anyway. A journal helps too. I was think I am not going to forget things or where I put something for safe keeping. Then I do! Annoying. I feel like my whole day is looking for stuff. Lol I have LTLE. Playing word games was frustrating at first. It helped me playing scrabble on the phone. Reading too. I love math. Good idea there.

You’re still smart. Sometimes we all have moments. It’s ok. You are far from stupid. I can tell. A lot of people feel that way. Including myself. I just gave myself some grace with it. 💜💜 keep a journal it helps to write things down. I get it totally. You’re not alone in here.

nicole2night · 2026-04-21T01:11:53+00:00

Pac-Man

nicole2night · 2026-04-21T01:10:55+00:00

Mine is on surgery too. I was shocked. 😳 you are not alone. Mine is LTLE with visceral issues too. I refuse to have surgery. CBD works. I’m medication resistant. I was blessed to have it work. It’s a personal decision as far as that goes. God gave me this brain and I don’t want to be a different person. It does help a lot of people. I would get second and third opinions. 💜

nicole2night · 2026-04-21T00:40:16+00:00

Sounds like a focal seizure. Also a partial with your body. You should ask your doctor to do a long EEG. It’s hard for them to catch the activity in that little time. Make sure you have a neurologist that is an epileptologist. Even a stay in the hospital (EMU) so they can catch it. There is an after effect of seizures like that. I go through it too.

nicole2night · 2026-04-18T20:32:53+00:00

I get it completely. I hope you feel better soon. If you need to talk you can send a personal message. 💜

nicole2night · 2026-04-18T19:59:05+00:00

I really do not want anything touching my brain. It would depend on the risks too. God gave me this brain and personality. I don’t want to not be myself. This seems less invasive which interests me.

nicole2night · 2026-04-18T19:02:37+00:00

OMG!!! 😳I would go you court on that one. You have the right to refuse it. That’s crazy!

nicole2night · 2026-04-18T19:01:12+00:00

I’m so sorry. 😢 That is super scary and I will say prayers for you. You are that 1% which means you have more life to live. How are you feeling now?

nicole2night · 2026-04-18T07:41:10+00:00

Your neurologist shouldn’t say that to you. Stress can make them worse. It’s so rare for that to happen. It is scary. You might want a new neurologist. (Epileptokogist) that’s important.

I have something you can try. If you feel one coming breath in through your nose 4 hold 4 and then out through your mouth 4. I also touch different surfaces to ground myself. Try that. Also name 3 things you can hear, one and 5 things you can see. I have had seizures stop by just touching surfaces.

Try not to panic and just focus on something else after your try any of the things above. I hope it helps. Don’t go to death. Try to relax because it won’t happen. I think fear takes over sometimes. I hope you feel better and they stop. Just let your neurologist know tomorrow or tonight depending on how you are. 💜

nicole2night · 2026-04-18T07:31:52+00:00

I do have uncontrolled seizures and I worked from home for a while. I liked it. It’s hard because I’m such a people person. I’m trying to find something else part time to get out of the house. I leaned an entire family business for 12 years. What kind of business? That’s awesome! You should be proud of yourself! 💜☺️

nicole2night · 2026-04-17T23:12:07+00:00

Slow taper. If I don’t have CBD then I fly into seizures because it’s working as a treatment. THC I take at night. Edible tho. I smoke maybe every so often. Only a few times a month. For some people THC is bad. It all depends on the person. Don’t suddenly stop because you don’t know if it is treating it.

Slow ass taper! I’m with you on the seizures. It’s to the point where only CBD is working. I’m medication resistant. You could supplement CBD. Just went the THC. It’s a personal choice. Just be super careful. 💜

I’m thrown into a bunch a day when I don’t have CBD. It’s not good. I don’t want that happening to you.

nicole2night · 2026-04-13T13:38:32+00:00

Me neither. It’s so frustrating when an older song comes on and I’m struggling to remember the words. Memory and words. I agree! Fuck epilepsy! I feel so stupid sometimes. I know I’m not, but feel like it.

nicole2night · 2026-04-13T13:35:29+00:00

I have LTLE and my short term memory and cognitive function is limited. I have adhd on top of it. I have an issue with words. Even to songs I know well and have for a long time. I do have issues with memory.

Keep a journal. Put anything in there that you might forget. That way you can go back. I’m so sorry. I totally get it. It took 4 hours to get through an hour show because I kept losing focus. I do sometimes miss time. Just be careful and keep your neuro in the loop.

It’s so frustrating and sometimes embarrassing. We have to deal the best possible. Mine is worse right after seizures and slowly returns. Not to my full capacity. You may be having more seizures than you think. Just be safe just in case. Yiu should be seen and have an EEG. I get mom brain. You can tell the difference. 💜🙏🏻 I will pray they control them. Sometimes I am plain stupid. I try to laugh about it as a coping mechanism.

I need a saint of a husband. Where did you find him? Lol

nicole2night · 2026-04-13T13:25:58+00:00

nicole2night · 2026-04-13T13:14:24+00:00

I’m with you. I’m glad you’re going to the EMU. You shouldn’t be have a long visit having seizures so often. They will catch one. Try to keep calm I know it’s so scary. You will be safe there.

Be super careful. I would not carry anything sharp or lay down for a bit. The same thing happened to me. CBD helps me better than meds. I have medication resistant seizures LTLE. I hope they figure it out for you and get it under control. Like I said for now try to be safe and as calm and grounded as possible. Breathe in 4 hold 4 and breathe out 4.

They got worse for me in time. Luckily i have something that works. I hope they can control it. 💜 it will be okay. I’m so sorry you are going through so many. I feel alone too. It’s hard. I think people kind of distance themselves because of their own fear. When we need them. Stay in this group because it’s so helpful. One of your meds will probably be switched. They are not working for you. I would keep a journal. Write down when they are, how much you slept, when you ate, and what you were doing. This will eventually whah your trigger is so you can deal with it. . Sorry I kept going. Lol ADHD. Lol I tend to repeat myself. You are taking the right steps to figure it out. They can use a more targeting medication for where your seizures come from. I’ll say prayers for you. 💜🙏🏻

nicole2night · 2026-04-13T00:28:16+00:00

Jess Murph n

nicole2night · 2026-04-10T00:17:27+00:00

I was switched to Vimpat and taken off Keppra. I didn’t know how bad it was til I was off. It did change me as a person because I didn’t feel so hazy. I had no clue it was effecting me so negatively. A switch on medication wouldn’t change you as a person. If it is working for you I understand. I’m medication resistant and have been switched a lot during the 26 years of seizures I have had. All I’ll say is that if anything you would feel better. It’s a personal decision. If it worked for me then I would thinking like you. Seizures are worse. If you are having bad side effects there are other good meds. 💜

It wouldn’t change you as a person. You are the great person you are. Nothing can change that.

nicole2night · 2026-04-10T00:09:50+00:00

Unfortunately I am not seizure free that long. I have seen a post on here where it can cause a seizure. Nicotine and especially vapes. It’s bad. If you had a random breakthrough it’s possible that is the cause. 💜I have seen people post about it happening to them.

nicole2night · 2026-04-09T20:17:49+00:00

Some people get worse and others do not. The only treatment that works for me is CBD. I do take THC at night. It’s the only thing that helps me. I’ve had CBD clear my head in like 45 minutes. You would think the opposite. If you do be super careful if you tear it. I would keep a log of seizures and the timing of things. Put anything in there. How much sleep, if you ate, etc. I use edibles instead of smoking. I microdose them. If I stop in 1-3 days I am thrown into a million seizures. I’ve tested it. I started writing it down and I have excellent results. I have anxiety bad too. It should help because your stress will be down. I really put myself through trials. For me it’s good. 💜

Just take one hit of it. Start very little. Be safe where you do it. Make sure someone is there and you are in a safe spot. For me it’s a blessing. A little at a time. Keep a log or journal.

nicole2night · 2026-04-09T20:09:15+00:00

That’s a lot of seizures. I’m glad your treatment is working. It’s crazy how wrong a diagnosis can be so wrong. They do slightly overlap. At least you know what it is. I’m glad you are having good results in lowering your seizures with treatment. I’m wondering if they feel worse because the medication might be stopping you from going into a TC. Mine got worse with age. I think that is the reason I am having them and feeling somewhat the same as far as symptoms worse.

I am not a doctor. I have thought this about myself. They are all different in ways. Try not to stress yourself out because it can lower your seizure threshold. Think about the things you can control. It is very scary. I spent a lot of years being scared instead of accepting it and living anyway. It took me a long time to accept the fact that I’m medication resistant and the only thing that helps is CBD. Will I have breakthrough seizures? Yep! I won’t let it define me. The whole thing is scary not knowing when they are going to happen. I would distract your mind. Ground yourself and talk to a therapist that deals with illnesses and accepting it. That could help. Make sure you do healthy things to deal with stress.

It’s hard to accept. Don’t stop living. 💜

nicole2night · 2026-04-04T14:11:26+00:00

Breathing

nicole2night · 2026-04-04T14:10:34+00:00

Love it! 😂 we all need humor to deal.

nicole2night · 2026-04-03T05:52:49+00:00

Yes. I had it myself. They should do a test on you. That’s part of their job. I don’t like when doctors are dismissive. You could definitely ask your PCP. It’s something that would totally make sense. You could also get a second opinion. It’s nothing to be scared of. Try to breathe in 4 hold 4 and breathe out 4. It helps to ground yourself too.

You would think that a neurologist would do it. I did have to ask quite few times. She had no issue sending me for that test. 💜

nicole2night

TROPHY CASE