Fed up

[car67]

I have been having seizures since Tuesday of this week, but as I had a really important meeting on Friday I didn’t want to take my lorazepam , unfortunately I ended up with more seizures and wasn’t able to attend my meeting, this led to a very emotional and frustrating evening. I’m so fed up with my seizures and seems to be that I am getting more and more frustrated with them .any advise please?

[Adlon57]

What sort of epilepsy have you been diagnosed with? Have you an epilepsy consultant? [Usually Epilepsy is not settled via a GP I would recommend getting advice from your GP to a local neurologist/epilepsy specialist] What sort of seizures do you have? car67 do you drive? Have you had epilepsy for long? Do you know what could have caused your first seizure? Do you have auras before a seizure? Have any members of your family ever had epilepsy? Is your medication right for you, if so should your dosage be altered [ALWAYS ask your epilepsy consultant if it is]? Those are the sort of questions you should get answers to! Certainly I have juvenile myoclonic epilepsy, my seizures are set off by anxiety, aggravation, worry, stress. I have had epilepsy for over fifty years, [400 + of them]I hope yours are far more minor than mine! I have my family motto tattoo on my right arm PATIENTIA VINCIT [patience endureth] which has helped me to keep cool (sometimes)! 👍Good Luck!

[car67]

Thanx Aldon for your reply

I have temporal lobe epilepsy due to a cavernoma on my left temporal lobe. I also have refractory epilepsy so no medication really works, I have tried and tested about 8 and they didn’t work which has been really frustrating. I suffer from simple and complex partial , and times have also had generalised seizures. I have had them for 11 years when they found was was causing them which was the haemorrhage . It truly took over my life, I isolated my self, stopped socialising , became a nervous wreck! It’s taken me a while to accept it but doesn’t mean I happily accept it! In fact I hate it. As I’m typing I have now had them from Tuesday to Saturday and 2 lots of my emergency medication, going in to hospital,causes me more stress as they don’t really know much about epilepsy, I been admitted on a few occasions and then discharged myself! I think as I have a heavy cold it’s made me have more seizures this time round. I am waiting to trial a new tablet out as soon as it’s been approved by FDA. I am so fed up with it though, sometimes I just cry so much because I hate having it . The side effects of my medication has thinned my hair out, damaged my teeth, I have memory loss, my balance isn’t the best! The list is endless. I don’t drive , but I drive myself mad! Lol

Apart from that good , how are you!😀

[sloan44 in reply to car67]

Hi. Ask your neurologist if you have access to Vimpat and Aptiom. I have left temporal lope as well. Began Aptiom in 2020, vimpat just last November and they have been working pretty well on preventing my partial onset and tonic clonic seizures. My medical marijuana here in the states helps as well.

👍

[Adlon57 in reply to sloan44]

I'm on Vimpat and Briviact. had a double seizure whilst going off my old medication, just on Vimpat at that time, but from April 2018 Vimpat and Briviact, to now, have had one seizure, in Dec. 2019 [that can be explained that one] Unfortunately that double seizure led to my infamous diagnosis in July 2021 " probably my last!" Too old to change now my epilepsy to well established after 50 years🥴The search goes on👍Good Luck!

[Adlon57 in reply to car67]

Yep I can identify with you there, sometimes the side effects of the medication was worse than the seizures, or the effects came up on you over time, OR you did not notice the side effects had made you a zombie you would be in a world of your own going at your own speed oblivious of what REALLY was going on or how people were looking at you, years of being like that, especially as I am a historian and some mind bending event has happened I did not remember it all or able to associate it with nothing! My whole life has been wasted like that. Now the final nail in my coffin "your next seizure will probably be your last!" too many seizures, broken my skull too many times! I have a liver inspection on Thursday to look forward too my schwannomas a precursor for operations to remove them [Schwannomatosis]🥴🥴I want to get out to travel a bit a long holiday but??

p.s Your damaged teeth was that side effects of Lamictal?

Glad to have got that out of my system 😤

Not too bad thankyou ! thanks for asking

😀

[car67]

I think vimpat is the brand name for locosamide, but I never heard of aptiom, I have now been on impatient and briveracetam since 2018 but I have now become immune to it which is why my seizure activity is quiet high at the moment. Medical marijuana is a no no here in Uk, 😦

[sloan44 in reply to car67]

I have heard of briveracetam. Yes, locosamide is the generic for Vimpat. The generic name for Aptiom is Eslicarbazepine. I'm sure your neurologist can fill you in on it. We didn't get Medical marijuana here in the state of Florida till 2017 and sales of it till 2018, and it was like pulling teeth to find a doctor to approve it for a patient since doctors had to first take a course on it and many didn't want to. I didn't get my Medical marijuana card till 12/20. I hope the U.K approves it in the future, it really does help. Have you tried locosamide?

[car67]

Lol I didn’t mean impart I meant vimpat sorry it’s predictive text 😧

[car67]

I still did t get it right 👆🏽I’ve being have seizures since Tuesday , 2 lorazepam later I’m hoping please God I’m better Tom 🙄

[car67]

Yes I been on locasomide since 2018, started small dosage but a good one now. But I think I’m immune to it coz I’m having seizures regularly day after day. So waiting to hear for a new med.