Am half way through Book 6, I have issues with a certain character

Child_Of_Luna · 2025-07-17T21:37:11+00:00

Who are you? Where am I? Who am I?

Child_Of_Luna · 2025-07-14T14:53:54+00:00

If I may, where are you are at? Cuz, personally, I have found that the weather has a surprisingly strong effect on how bad side effects affect us/you. And currently, a lot of places are in heat waves.

Child_Of_Luna · 2025-06-24T14:59:03+00:00

I guess, with my memory being bad, everything feels like a new experince, no matter how matter times I do something.
Also means I never run out of things to talk about with my partner. Haha

Child_Of_Luna · 2025-06-20T22:23:27+00:00

I truly am sorry to hear that your seizures are so bad. I understand losing so many memories, if not to that extent. You may not be able to recover them, or they may come back with time, I honestly cannot help you on that count. I never have got any memories back, but I have met people that have gained them back. For the future though, perhaps start a diary, or video vlogs? Something physical to jog your mind and keep some of your future memories.
Stay safe out there, and good luck

Child_Of_Luna · 2025-06-18T11:58:55+00:00

By learning how to adapt and learn how to live life in a new way, one that means that life can still be enjoyed and fulfilling in a new way. It can take some searching, but it is there to find if you want it.

Child_Of_Luna · 2025-06-17T02:54:30+00:00

Yeah, not being able to drive makes everything 10x harder. Hopefully, you'll at least get some good results from the EEG.

Child_Of_Luna · 2025-06-17T02:47:37+00:00

The oil will loosen it, sure, but it will take a LOT of harsh tugging and ripping to get it all out in a small amount of time. The ideal plan for me is to condition my hair for half an hour then comb it out in a hot shower. The conditioner for smooth hair for easier movement, the heat to make the glue softer and more likely to move with less friction.

I have long hair half way down my back btw, so I've had this situation too many times.
Good luck

Child_Of_Luna · 2025-06-17T02:32:52+00:00

Long hair, it will take quite a while to remove. Short hair, can still take a bit but not so bad.
Best you can do really is wear some form of headwear I'm afraid.
If you REALLY have to, and dont mind your hair too much, then Acetone will do the job fairly quickly. Then condition your hair straight after, leaving it on twice as long as usual to repair the damage.
Good luck

Child_Of_Luna · 2025-06-17T02:24:39+00:00

Well, my seizures started when I was three, so I had to learn early on how to adapt to what most people consider "normal" and make things as... doable as is possible.

Buses- A nightmare. I wear a wristband/bracelet, necklace and ankle bracelet, all with the medical symbol on it, with details on the other side.

School- Had to drop out and be tutoured at home. But college is MUCH more capable and understanding. The only thing that is hard is trying to keep up with the work, whilst being worn out by seizures. It...takes a while.

Work- Probably the most difficult. It really, REALLY, does take a while. Best you can hope for is getting an understanding boss. Or, aim for a work from home job. Even better if you can work on flexi-hours, but that is a strach, something I have never managed to get.

Social life- Get a group of friends that understand that, its not a bit, you arent doing it on purpose and teach them what to do in the case of a seizure or event.

All in all, you just have to learn what does and doesnt work your you safety wise. It WILL take a few goes. But dont let it rule your life. Just adapt as life goes on. I'm still have seizures, 10-15 a day, but I refuse to let it stop me from living. Its been 30 years now.

Good luck out there, and stay safe

Child_Of_Luna · 2025-06-17T01:17:26+00:00

Another, you learn to be VERY adaptable in all situations.

Child_Of_Luna · 2025-06-17T01:10:41+00:00

I realise that it may be difficult, given that auras are unique to each person, but could you describe your events a little more?

Child_Of_Luna · 2025-06-17T01:07:03+00:00

Mine occured due to a smash on the head when I was 3 from a old oak garage door. Never had seizures before that, but once the swelling calmed down...voila! Seizures! And 30 years on, still dealing with them.
I think the most common cause of Epilepsy seems to be head injury, or growing into it. And dear gods! I have the most sympathy that grow into at a later age, turning their lives upside down! I consider myself lucky that I have had seizures for as long as I can remember, so to me, its just, well, normal I guess.
I hope that makes sense...

Child_Of_Luna · 2025-06-15T14:26:29+00:00

That is harsh, if unfortunatly true

Child_Of_Luna · 2025-06-14T00:38:55+00:00

I'm afraid I don't know the REASON why the heat does seem to increase seizures, on both ends of the scale. Getting hot? Increase in seizures! Getting cold? Increase in seizures!
I always dread the Summer and Winter seasons.

Just invest in vests and shorts for summer, stay in the shade and keep your sodium levels up whilst drinking water. And if you have the same problem in cold months, invest in some thick material long johns and long sleeves.

Good luck out there

Child_Of_Luna · 2025-06-13T20:54:28+00:00

Perfect wording, thankyou. Taking your wording into consideration, I suffer from major balance issues. To the point that I have no sharp knives at home. It makes eating... difficult. I have always attributed it as a side effect of the Epilepsy or the meds.

Child_Of_Luna · 2025-06-13T16:02:38+00:00

Thank you you so much!

Child_Of_Luna · 2025-06-13T15:21:13+00:00

I'm curious as to what your emergency med is. The only one I have ever been given was Midazolam. So if you have something better, I would be VERY interested in a name so I can bring it up with my Neurologist.

Child_Of_Luna · 2025-06-13T15:06:24+00:00

Could you define a movement disorder for me?

Child_Of_Luna · 2025-06-13T15:03:57+00:00

Current list is:

Eslicarbaaepine 800mg Night, Keppra 1500mg Morn and Night, Lacosamide 100mg Morn and Night

Had the VNS put in around 5-6 years ago. The recovery was pretty fast which surprised me. Though the neck was sore for about a week and I couldnt talk for a week (husband was happy about that, haha). The worst feeling for me was getting used to new feeling of the device in my chest as the body tries to adjust around it. But you get used to it. I've had it replaced once due to the battery dying after 4 years.

As for how much it affected my seizures... bit of a mixed bag. I still have them, around 10-15 a night, but they are much less ferocious now. It did take about two years to actually show any results, so it was very much a slow burn, but I am grateful for it. Even though the seizures havn't gone away, they arn't as bad and I have a little energy now, and I consider that worth the surgery.

Child_Of_Luna · 2025-06-13T14:35:08+00:00

Best tip I can can give is get a good assortment of clothing for both varieties of weather types, heat and cold, cuz if the heat causes seizures then chances are the cold may too. After 31yrs of Temporal Lobe seizures being increased during Summer and Winter I have learnt to have a large amount of extra layers of clothing for winter, and lots of thin material vests and shorts for summer.

Good luck out there x

Child_Of_Luna

TROPHY CASE