Hi Everyone My Name is David And I`m New Here

[quiggy2512]

i`ve had epilepsy since 2008 but hid it due to not wanting to lose my job as a spray painter, but from jan 2012 the seizures got worse 2-3 a week then daily and the medication i`m on dont seem to be working i`m at 300mg of lamotrigine and i have 5mg diazepam to take if i`m feeling a bit wound up or if i`m getting really frustrated with myself, i also get 20mg of tamazepam to help me sleep as i cant get to sleep as i`ve had seizures during the night and now i`m scared of falling asleep and taking a fit, My gp wants to ad sodium Valporate when i get to 400 of lamotrigine, if this combination isnt working is there anything else u guys have used that works, i`m alergic to keppra aswell so thats a no go for me, i`ve got a family of 2 young kids and a partner and were expecting our 3rd child, i have to live at my brothers but i see my kids everyday as my brother brings me down, i`m honestly just not coping with this and feel as if its never going to end, i`ve just taken a seizure about 45 mins ago and hurted myself real bad, anyways enough of me ranting on

Anyone any suggestions to medication i can suggest to my doc

 

[jyearta]

Hi and Welcome,

I don't what you should take. It took the Dr. trying me on 4-5 meds. before they found what works for me.
You will need to let you dr. know what is happening. I hate it when they have to, change meds. but this is the only way of finding what works for you.
If that new meds. doesn't work go back yet again, Keep at it until you find what you can live with.

 

[quiggy2512]

i see my gp every 2 weeks and have done for the past year but its getting to the point i`m gonna stop taking all meds together. i`m so frustrated with myself that i cant have a normal life, i know i will eventually have a normal life but going from a car show winning spray painter to this its so depressing what meds have you been on ?

Davie

 

[Nakamova]

Hi quiggy, welcome to CWE!

I'm sorry you're struggling to get seizure control right now. There are a lot of meds out there to try, but no way to predict which one(s) will work best for you. It can often take some trial-and-error to find the right med or combination of meds as well as the right dosage. Ask your neurologist about all the med options out there. See http://www.epilepsy.com/epilepsy/seizure_medicines for a complete list.

It can also help to keep a seizure diary to track your seizures, medication, side effects, and any stressors/triggers that might be contributing to how you feel. The diary can potentially help identify specific triggers to avoid. The #1 trigger is fatigue, but they can also be things like low blood sugar, flashing lights, food sensitivities (caffeine, MSG, aspartame, gluten, etc.) illness/infection, emotional stress, etc. It can vary quite a bit from person to person.

There are other good tips to be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[Nakamova]

Quiggy, ideally you should be seeing a neurologist, not a GP. A neurologist should be able to give you information about the different meds. Whatever you do, don't stop your meds without checking in with your doctor first. And don't stop them abruptly, as that can cause seizures or other withdrawal side effects. Any tapering off needs to be done very, very slowly.

 

[quiggy2512]

i have a neurologist who is very very busy i get 1 appointment per year and i`m due 1 on the 17th of this month and then again a year later. this is whats getting me down i feel as though the letters the neurologist to my gp are to keep me on this path of medication which isnt working. my gp prints all the letters out for me so i can take them home and keep a journal of what meds dosage etc, i do keep a diary of my seizures like is said to do on the forum, i`ve recently learned about some epilepsy injection, as of this moment i`m willing to try anything. i got bloods taken last week to check my liver and kidneys and they`ve found something but wouldnt tell my mum what it was and i was out at the time so i`m worried sick over this aswell. i know different meds react different with each person but i would like to know at least one that a few people on here are comfortable with and is helping there seizures. another thing is i`m only 29 Lamictal damages your liver i dont know how bad it damages it but i want to see my kids grow up and my new one being born.

Davie

 

[quiggy2512]

also thanks for the replies its good to know there`s people out there in the same boat as myself, i feel isolated and really ashamed of myself for taking these seizures in front of people

Davie

 

[Crash]

You should certainly NOT feel ashamed about having seizures in front of people,as it's not your fault in any shape,way or form.It is hard but you will get over it.Don't let epilepsy beat you.Also you aint isolated any more,you have joined CWE,and i promise you,if you stick around you will not feel that way any more.Its the best E forum out there.
Hang in there mate.

Best off luck!

 

[Nakamova]

Liver damage is very rare with Lamictal unless you already have liver problems when you start it, or are under 2 years of age. I'm on Lamictal, and haven't had any problems with it, but as mentioned before, everyone reacts differently. You might want to check out this thread for a sense of how people feel about different meds: http://www.coping-with-epilepsy.com/forums/f27/aeds-give-you-worst-side-effects-977/index12.html

I know it's hard sometimes, but you shouldn't feel ashamed about having seizures. If someone makes you feel bad about having one, then they need to be educated about epilepsy. if they are beyond educating, leave them in your rearview mirror.

 

[quiggy2512]

Cheers Crash i`ve been looking for a good site for ages and never came across this one until today, i joined but was a bit insecure about writing anything but you`ve all been very welcoming and i will be stayin part of the group and also be on daily from now on

To all thats posted thank you you`ve made me feel a whole lot better knowing there`s a lot of peple out there like myself who have overcome epilepsy

 

[Crash]

Thats good news that you intend on hanging around,especially cos your another Scot!!! But seriously you won't regret it,everyone is sound on this board,look forward to catching up with you.

 

[quiggy2512]

cheers bro i didnt even realise you were a scot i hadnt looked at anyones profiles yet, just having a look at the poll on that page there and there want to put me on that sodium valporate , i`m kinda thinkin its a deffo no go for me there`s to many risks involved, i`m murder for side effects man, you know they gave me tramadol for the pain after seizures which i thought was funny cause they can cause seizures LOL. then my gp offered me 10mg morphine instead of the tramadol, i`m thinkin a new gp is in order after reading some of the things on here man

 

[Crash]

Yes,the side effects are so bloody different for each person,some are slightly lucky then some are not.Im on 800mg a day and 2000mg of Sodium Valporate,i also get Diazapam for stress because thets a trigger for me.

Thats crazy giving you Tramadol,i've seen someone seize on Tramadol,a non epileptic.Lucky they have never seized since.Morphine for the pain? there are other pain killers he could prescribe you rather than morphine.But have a look around,and ask questions.I guarantee you will always get an answer or help on this forum.

 

[quiggy2512]

i`m on a low dose of tramadol just 1 50mg every 4 hours , it does work but co codamol didnt neither did any of the other less strong painkillers only tramadol , i`ve not tryed the morphine because of the addiction that goes with it but thats the burdon we have to bear i suppose

 

[Crash]

Thats not so bad if your on a low dose,and if it's the only one that works,then what can you do? I can understand your concerns with the morphine.An easy drug to get addicted to although im sure the doctor will keep a close eye on the situation.
With any luck the Sodium Valporate might do the trick.For me the only real side effect was weight gain,i maybe put on about a stone but certainly worth it as the Tegretol and Sodium has helped my seizures a great deal.

Both my meds are slow release,perhaps this is something you could bring up with your Doc or Neuro.

 

[quiggy2512]

i was on mirtazipine for a few years until jan 2012 and i put on about 3 stone lol, went from around 12 to 15, so i cant really gain anymore weight i`ll be like a beach ball LOL, i had a look at the side effects of the sodium did you experience anything else apart from the weight gain?

 

[Crash]

Apart from the usual memory issues,and sometimes the feeling that my head aint working right.But i suppose that goes with the territory.But the weight gain was the most obvious,make sure you get regular blood tests when and if you start it,for you liver enzymes.

 

[quiggy2512]

i just got bloods done for my liver and kidneys and they found something wrong, they called my house when i was out and wouldnt leave a message so i have to call tomorow to find out what it is thats wrong, prob is when my missus told me i took a seizure and then again when i was thinkin about it last night before i joined here i took another seizure, i have been reading through a lot of posts and saw that stress can bring them on, if this is the case i`m in the sh*t cause i got a 1 and 2 year old at the minute lol. i`m very opposed to the sodium to be honest after reading a lot of things about it, hair loss aint an issue i`m a skinhead lol so would take off some shaving time. the weight gain is a no no for me, i`m gonna see my specialist on 17th for an MRI scan and talk about other treatments i have heard about an injection you can get, if there`s less side effects i`m up for tryin that, i dont know what its called though

Davie

 

[Crash]

To be honest hair loss hasn't been a issue for me,but i always shave my head down to a one,so i don't really know.As i said i only put on around a stone and im on the highest dose off Valporate so they can't up that dose.I have no idea what the injection is,i might ask about that my self.Stress and booze are my biggest triggers.Ive cut out the drink,although i still have a few now and again.My nuero is quite happy if i have a few but know more.
But in the last 4 years ive only had about one tonic,and a few absences compared to having lots off tonics.But speaking to your nuero is your best bet mate and i hope everything goes ok for you,all the best.Let us know how it goes!

 

[quiggy2512]

Will do man, i gave up the booze 3 years ago and 6 years since i was taking 2.5 oz of cocaine on a wednesday night, 71 grams in a wednesday night of pure cocaine man from 6 pm till 6 am easy.Thats the o`l Nazi`s for ya man bad bad people as i learned the hard way.

By the way if my pic offends anyone please let me know i was showing someone on another post

Davie