How I manage my epilepsy tips | Annie B
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- čas přidán 4. 07. 2024
- It was requested so here it is! My tips on managing epilepsy from my personal perspective. I have complex partial seizures and these things really help me deal with this invisible disability.
❎I am not a medical professional so i cannot give epilepsy diagnosis advice please consult your doctor or an epilepsy charity❎
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WANT TO SAY HELLO?
Want to get in touch? Well, that's nice! Drop me an email - annie@talesofanniebean.com. If I don't reply straight away I'm probably climbing a tree, throwing myself down a mountain or I'm just so far off the beaten track I have no wifi!
Thank you for this! I really appreciate your positive perspective on the world of epilepsy
thank you! this is very helpful, if only anxiety didn't exist
When I have a period of my 'funnies' (although boy are they not funny) I watch a couple of your YT's to remind me that a nice, intelligent, active lady deals with the same thing. They are indescribable to anybody who doesn't have them and relating to your conversations is a great help. Thanks and please keep them up.
Hi Annie. Thanks for your videos. My 16 year old son was diagnosed with focal epilepsy last week. Your videos have helped me to understand what epilepsy is but also what my son may be going through emotionally. We started meds yesterday and the long journey ahead. Thanks for sharing. Cheers Jo
Thanks again Annie B 💕
Thank you for doing these videos! I'm new to having these seizures after having brain surgery a little over a year ago and this is so helpful 💕
Thank you for your tips!
My son has epilepsy from a brain tumor. 8 surgeries later, the last being a right frontal lobectomy. He takes 4 anti epileptic meds 12 hours a part. I'm the caregiver & journalist for his experience. I've asked him to try to explain how he feels during a CP. He can't really explain! I do my best to let him be independent, & yet he often doesn't comply. Meds, regular sleep! Avoid stress, which is usually music. When he wakes up & I hear him listening to screaming music of something like System of the down, I sense this is a hard day ahead! I just want to know what it feels like for him! Before during after seizure. His name is Daniel. He's 33. Im Christine/mom/caregiver. In the USA.
You should ask your sons neurologist for a medicine called lamotrigine or Lamictal which is more effective for epilepsy but it really depends how severe his seizures are.
It is important for your son to get proper sleep and eat his full day meals.
In people who have seizures, they can have the feeling of a seizure before they have one. During a seizure, the body becomes stiff and a portion of the brain will feel like electric movement which can be painful.
Your son should always drink cold water immediately after having a seizure.
If he still feels weak, then he should drink a frappe or something ice blended as this will cool the brain and body.
He should watch a comedy program to reduce his stress.
He should avoid smoking or anything that affects the brain.
Amusement park rides as this can worsen seizures.
Being around Chemical factories.
Another great video Annie :)
🙏🏽 thank you. Going to try and get my 17 year old to practice more mindfulness. I heard specifically cognitive behavioral therapy was helpful. For the anxiety loops when he thinks he’s going to have one or maybe you have a focal and you’re anticipating a full. Calm is key❤. Thank you for sharing. You are a blessing
really appreciate this video and you sharing everything. If you're willing to share I would love to hear about some of your seizures throughout your life that you can recall. Some of the things I've done while having a seizure seem so silly, like talking to friends or writing work emails. Would love to here just hear other peoples stories of having a seizure because things I've done almost sound made up lol.
this is amazing so helpful and actually eased my worries thank you i have just been diagnosed at the weekend i have nocturnal seizures
Again, spot on what you are describing in the end. It can drive you nuts, when you can not really tell whether it happened. (Which to me it is always a sign that it did). I am curious about your (personal) opinion: Do you feel like your epilepsy is progressing for the worse?
There are mixed opinions about whether partials can progress, but the medical professionals that I am seeing lean towards yes if it remains untreated. I am just curious what you think about it.
Thanks, and hang in there like the rest of us.
I get complex partial seizures. Mostly in my sleep but when they happen while I'm awake its terrifying. I wander around and fiddle with things. In my head it is a feeling of terror, deja vu, recalling memories and just like someone flicking through tv channels and wanting them to stop because you saw something you recognise. I've been fighting epilepsy for five years. I was a huge motorcycle enthusiast, I promised myself a classic car and I have to accept that this is over. I'm going through a transition where I am accepting my fate. It cant stop me cycling.
Yes totally. A very accurate description of what I get too. Keep strong.
Thanks. I can relate to ALL the feelings you say. Wow I've been there, done that. I thought I was going mad too. I have to accept that I am no less of a person without a driver's licence. I got ready to quit on life. I feel better for just letting go of my old beliefs. I can still put the miles in on a bicycle and burn the calories rather than petrol. I've accepted I won't drive again and I have to live my life it's a bitter pill but I'm swallowing it.
I just recently diagnosed with GTCS epilepsy and I felt sometimes too low and sometimes I feel like I am hero I can be already is that the common. And I also feel too depressed that I can't back to my normal life. Please make more videos on diet and motivational videos on epilepsy
When you are taking your medication on time, how often would you still experience seizures (including absence, simple and complex partial) I.e. once per week, once per month, once per three months etc. And would you say that the episodes you experienced were due to failure to take your medication?
Very good tips! Two of them are problematic for me/ or I have questions about. If I kept spare meditation stashed, I think I would likely be taking expired medications when I use the stash. And expired medication will cause severe seizures. The other thing is that I was told by a neurologist to keep a seizure diary seven years ago.. she never looked at them. I went to a different neurologist and discussed that with him and he had me send him my notes.. he never looked at them or talked about them with me, didn’t know if he had them until I asked. So I have very good information on my seizures but it really seems to be just for my personal investigation purposes rather than for the doctors right? Just want to hear your thoughts
I get my seizure attacks only when i am alseep. I cut my tongue, threw my shoulder so bad that muscles damaged. It is hard.
Also change your coffee to decaf
I taught myself to be self reliant. The challenge is difficult but I will never give up. Be strong and safe my epilepsy freinds.
I have unusual symtoms jerking symtoms of tonic clonic had one awake which I thought was non epileptic attack disorder as you can't be awake topamax improved the condition today I found I had a boyfriend in 2018 and I don't remember him at all. I'm horrified. I've been described going down the street confused. I'm very sad. I don't know what happened. I'd written it in writing journal. This is the 3rd and the worst case of memory loss I've experienced with obvious risk to health.
Have your seziures got worse since your diagnoses a few years ago? I didn't think you had absences before?
I had seizure since 7 and take Depakine valproic acid but it have alot side effects I want to change
Ask your neurologist for a medicine called lamotrigine or Lamictal as this medication is more effective for epilepsy
How did you learn to Control your seizures?
Do yiu know people with tonic clonic seizures
Tonic clonic seizures are the most common and most recognized form of epilepsy. I have most forms of seizures including tonic clonic seizures. The problem with partial seizures is that they can manifest in many different ways, and emergency personnel and the public are often not aware that these are actually seizures occurring.
smiling: description of trying to hold it in haha