Xcopri - 7 months later and counting
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- Опубліковано 18 вер 2024
- My experience with epilepsy and taking this new drug, Follow me through my personal journey with epilepsy hoping to help others too. I’m the child of the King! #xcopri #epilepsy #brainsurgery #zizzie78 #bedazzlemyhair #togodbetheglory
Wow, cool video. I am at 150 MG getting ready to go to 200. I have had seizures for 50 years, with 40 years of Dilantin. How has epilepsy impacted your memory? I feel like mine is rapidly declining, so I hope Xcopri works. I hope you continue to do well. I do not know your story but you have the VNS, surgery and medication -- I understand it is a battle.
How have you done with the xcopri so far?? Thanks in advance
@@shwettypotato8107 I am off Xcopri, back to Depakote. I am off Dilantin because it has caused osteoperosis.
@@shwettypotato8107 So far still on Xcopri ... i'll be doing an update video soon ... subscribe and hit the bell if interested ;-)
@@shwettypotato8107 doing good so far... new update coming... subscribe to follow my new updates coming
I started this med because I had break through seizures on my other meds and what I has noticed is ( at 100) server tiredness.... and omg like no seizures but oh dear God help me if I miss a single day I will has a seizures ..and it wasn't that server before ...like now it's guaranteed I will has a seizure when before xcopri it was please pray to that I don't get over stressed until I get my meds ..I mean I hope that makes senses
..I'm kinda a mess, as we has been figuring this out but this med has been a life saver for me
How are things now? tiredness vs. seizures? Has your physician cut back your other meds?
Hopefully all going well?
How is Xcopri working on you now? Are you still on it? I am up to 250mg
Thanks for the update. I was wondering if you had to discontinue this medication. I wish you were doing better as far as side effects. They sound very similar to what my daughter has. She plans on starting Xcopri next week. I hope you continue with your videos.
I haven’t discontinued using Xcopri. Is there something specific you are concerned about? My other two seizure medicines are maxed out in dosage amounts so I know those are the major side effect issues for me.
Do you think it is similar to topamax? I was prescribed this because topamax is giving me anemia and serious cognitive decline. Does this medication cause serious weight loss like topamax?
@Ashley Schmidt I certainly hope not. I was on Topamax a few years ago, but was taken off of it. I also had major cognitive decline when I was on Topamax. Topamax is one of the worst meds on the planet.
@@stacybyers1985 I agree, it is terrible. Keep up the good fight, you are very inspiring and I appreciate you sharing your experiences. Thank you!
Topamax was horrible for me so I can confidently say that Xcopri is not like that for me, however, everyone is different. Let me leave you with something I was once told, if your doctor thinks Xcopri is a good fit for you, try it because you will never know until you try.
You’re starting to sound like a drug company wants you to not be open and honest. Which is entirely how your earlier videos looked. Not having a go at you at all - I think you’re amazing. Just worried that you’re being paid now to not say what you think. So. Simple question. From someone who’s cared about epilepsy since he was a student helping kids with severe epilepsy at the world famous Chalfont Epilepsy Centre, in the UK.
Has your seizure frequency improved with cenobamate?
You’re recording a really important story here.
It means a lot.
I have had 3 episodes of status epilepticus in April--one of which had aspiration pneumonia. Back in the 90's I took Depakote and dilantin, together, but I could not deal with the side effects (vomiting)---an epileptologist told me that dilantin and depakote should not be taken together.
So sorry you feel that way Brian. I am not getting paid by anyone. This is me sharing my real life of the ups and downs of epilepsy medicine and the knowns and unknowns of it all.
I am so sorry for taking so long to reply to you. It's hard to say that just one thing solves having seizures. Way to much to share in a comment but follow my channel, subscribe, and hit the bell for all my videos. I have so much to say but do get myself overwhelmed so I have to take it one step at a time to avoid seizures.
I'm on 1 and tired 😫