Brand sensitive Keppra/ Levetiracetam/ Lamictal/ Lamotrigine!
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- čas přidán 26. 08. 2024
- This video is about the medication I take, Lamictal and Levetiracetam.
My thoughts and feelings on growing up with the medication and how it all affected my social life.
Your not alone.
Thanks for sharing your thoughts. I'm a fellow Levetiracetam / Lamotrigine person. Lamotrigine came 5 years after the former, and over the past 2 years has helped me out personally much more.
Thank you for sharing. I've had my first grand Mal seizure and I can relate but no one really understands the fear we live with.
I love you , you’re not alone I have temporal lobe epilepsy in the left side of my brain I have absent seizures I have all different types I have convulsions and this is the only medication that has been working for me I’m sorry you don’t have access to it anymore and I’m sorry that we go through this you are amazing
How ya Stephen from Ireland. Love the brave speeches you put up, understand where you're coming from and the problems that come with epilepsy physically and mentally, it can literally take over your lifestyle most of the time that's why we find it so hard to live with, I'll give you an example of my epilepsy. I got diagnosed when I was 18 in 2009, still living with it at the age of 27 and I have been through the wars with it, my life can be very depressing at times, so depressing it affects my lifestyle for example, I have my own apartment and I never use it because I'm not fit to live by myself, I have to fend off my parents to look after me so that means I'm interfering with their life's and not living my own life like a 27 year old man should be doing, it's also interfered with confidence and social side of things, I feel so embarrassed about my epilepsy around people my own age because people would look at me as a freak or something if I had a seizure so that's gone out the window, so yea I understand what your saying that epilepsy can be so hard to live with, and remember your not alone but don't take this message into a sigh of relief make sure to keep pushing at them doctors for a cure and I'll push at them across the water because this just can't go on anymore, us as epileptics deserve to have a life too, if they can cure cancer and brain tumours they can cure epilepsy too, ya only get one life, anyway text back and give me your opinion about it ☺️
It's a shame epilepsy research doesn't get enough funding or awareness spread! Nobody ever talks about it and whenever i have tried to bring it up or raise money i get ignored :( which is why i started this channel, wanted to do more with epilepsy talk but had a breakdown last year and deleted half of everything i had and just haven't done a video since- not even sure where to start!
I'm 27 now and find it really hard to find a job and keep one. I worked in a hotel but the lighting kept flickering and changing the light-bulbs wouldn't help as it was a wiring problem. I'm still at my parents house and a long way off moving out. I try everyday to get a job even while doing a hairdressing course which i finish in November. I've tried so many career paths but nothing has worked out so far and really hoping i can do hairdressing! I want to learn to drive too as i'm over a year seizure free (feel very lucky about this) but not sure if i should, I've had people put me down about it but would be nice to have some independence.
I want to do a fundraiser to bring awareness but money is too low to hire out anything or pay for prizes and games ect so keep pushing it back, i would want media attention too lol
I'm not brand sensitive but your story hits home. God bless and best wishes
You’re not alone! I’ve been on brand name Lamical for years, and when the insurance company switched me to generic, it really gave me anxiety and I called the suicide hotline multiple times. So it’s a fight to get the Brand name because it’s so expensive but worth it.
Lately though I’ve been experiencing those muscle spasm jerks, especially in the morning, so I saw my neurologist yesterday and she prescribed Keppra along with my usual dose of lamictal. I feel ok so far but have a strange feeling like I’m awake after I slept too long. Even though I got about the normal amount of sleep last night.
I hope they bring your medicine back and you can get some peace! Just realized this was made 5 years ago so I’m curious for an update.
I’m not even allowed to ask for specific brands anymore. The stress of calling around different pharmacies is making me have absence seizures :/ just going to have to risk it every month. I’m not sure how much it will cost here, we have the NHS although I’m tempted to pay just to get what I need! My doctor isn’t helpful at all. Not seeing neurologist until February if it’s not cancelled
Ugh they make it worse for people with epilepsy, the stress of trying to find the right treatment can be harmful. I’m sorry your doctor isn’t helpful, so frustrating! My meds would be over $1k a month without insurance, couldn’t afford that. The MRIs I have scheduled for next week are going to cost at least $950 out of pocket but they have a payment plan I have to use.
@@lilkitkat80 I wrote to my MP of my area and got ignored, I’ve written multiple times but our government doesn’t care. They don’t care if people with ‘disabilities’ die. They have said things that hint towards it. I’ve been lucky so far finding my brand but think I’m going to have to take a different one to risk it. I’m actually terrified
@@sianvlog9335 agreed, they tend to give up on us so easily. I'm with you on being afraid to go to sleep, although I need that sleep, when I started that keppra they added on to my meds. So far so good but I have the fear in the back of my mind.
It may not be the drug itself that causes the problem but the other stuff in the pills. The fillers etc. The trouble is there's so many thins in pills that just don't need to be there, colours, all sorts of addatives, you have to check everything on the lable, they can all cause problems. I too am sensitive to many brands. The difference is, they cripple me.
Even with Keppra- i can't take that :( It is easier to get hold of and Levetiracetam brands keeps running out. I do check the labels when i remember- usually i'm on the same brand every time as the pharmacy know which ones work for me. I end up having a panic attack if they don't have it. It's a shame they make them all different, don't see the need for different colours :/
I'M SO SORRY FOR YOU!!!!
god now i'm terrified
i'm changing from lamotrigine over to levetiracetam
well, i hope you're okay now Sian Vlog :)
How’s your changeover going? Try not to worry too much, apparently it’s quite rare to be brand sensitive!
Hope all is well with you :)
@@sianvlog9335
it's actually going pretty well so far...
i've got around 6-8 weeks left of the transition...
and then i'll be on 750mg twice daily
getting the right dosage/amount is annoying sometimes...
being off school while going through the transition process does make things better though
but all in all i'm feeling pretty good
(thank you for the reassurance!)
^w^
I'm on Tegretol, Lamictal, and Epilim. Earlier this year my specialist changed my medicine to Keppra which totally took a toll for the worst. I went from having seizures once a month to once a week. I was having seizures at night, so I was like you; afraid to go to sleep incase I had a seizure, so I know how you feel. I even stopped taking the Keppra (I was taking some other medicine though), so my specialist eventually changed it back, but there was no need to change it in the first place. Have you spoken to an Epilepsy nurse/your specialist about your worries? They should be able to help. Hope you get where you want to be
Yeah i spoke to her, i'm getting a MRI soon. But thats all they are doing to help me. Alot of people i've spoken to have a problem with Keppra- even my doctor said that but now they are saying its all in my head.... but its not just me so they just seem abit lazy where I am :/
Hi! Iam from Vietnam. I'm fellow Lamotrigine/Levetiracetam and also Carbamazepine(Tegretol). Thanks for sharing your thoughts. I can't live without medication. Seizures - it's such a nightmare for me.
Do you have many seizures (hope you dont mind me asking!)
@@sianvlog9335iam not good at English ^^. I had seizures every two or three months.!
As long as they don't put you on Epilim. That stuff is the worst stuff on the market. My wieght doubled while I tried starving myself and it cost me my gallbladder. My hair fell out and all sorts of other things happend.
Look after yourself and don't get desheartened. If you don't like a drug put your foot down or argue with the specialist about it. Learn and Lean.
Have you thought of contacting your mp and see if you can get that drug back in England ? Have you tried canabis oil ? I saw you post this on facebook
I dont know who to email or write to :/ and not tried cannabis oil, wouldn't even know where to get it or anything... I went so long seizure free that i didn't even think of things like this
www.ukpolitical.info/Finder.htm that will find your mp and i found this about canabis oil
www.amazon.co.uk/s/?ie=UTF8&keywords=cbd&tag=hydrukspg-21&index=aps&hvadid=186582591294&hvpos=1t1&hvnetw=g&hvrand=10799417239021531988&hvpone=&hvptwo=&hvqmt=b&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=1006747&hvtargid=kwd-11867751&ref=pd_sl_5raybiyco5_b
Ask your doctor before you try this or ask him about using it.i hope this helps you
I've heard about the oil you put on the bottom of your feet, is this the same stuff?
I dont know alot about canabis oil so if you put it on your feet or not i wouldnt know.try putting that on a epilepsy page on facebook
Ohh ok :) I will, i've only ever seen it mentioned from people in the US