How long do you cope for?

[aggy84]

Hi there!

My name is Annie, I'm 27 I've posted before about whether I had epilepsy or not and after 6 years of being told I just had panic attacks I've now recently been diagnosed with partial & complex partial seizures. I started on keppra 3 weeks ago. I was put on 250mg twice a day for a week, then it went up to 500mg twice a day and now i'm on 750mg twice a day. Initially I was still quite shook up from the 6 years of not knowing what I was experiencing and I had a couple of partial seizures in the first week. Then my dose went up and I had my last seizure a week ago today. Well that sort of changed as I had one this morning - but Im absolutely wiped out, I went to a concert last night didnt get to bed til half 1 then was up at 7.30 to go to work. I'm trying not to beat myself up about it but I believe that seizure was purely from being super tired.
My query is, as i'm trying my hardest to stay positive and give my body the best fighting chance - how long will it take for my body to get used to the pills that they work? I'm trying to be patient but as many who experience partial seizures, I'm so confused during and afterwards I'd love them to bugger off. How long does it usually take? I also have a bit more of an issue. When they did my EEG & MRI scan they picked up that I was holding too much fluid in my ventricles because they think the tube at the back of my brain near the spinal cord, is damaged. I went for a further MRI scan the other day and I await my results. Could this be the reason I'm still getting seizures? Obviously seizures are less and less instense but is it calm down then stop or should they just stop straight away?
Has anyone got any hints or tips for lifestyle changes? I hardly drink alcohol, I dont drink coffee (I drink fruit tea), I'm quite fit and exercisen enough... I just want to do my part to give myself the best chance.

Sorry for all the queries, its just so confusing experiencing these and I want to get them stopped however I can

Please answer if you get time
xxx

 

[sah313]

Hi aggy84

I also have partial and complex partials and I am currently on the max dose of keppra, been on them for a year and a half. I also had a hard time being diagnosed with epilepsy I was past from pillar to post between different psychiatrists and councilors before I begged to have an eeg and they discovered i had epilepsy all along (you can probably tell im bitter about it!).

My seizures haven't completely stopped, but they reduced dramatically when i finally went on the maximum dose of keppra. Once you have found the right strength for you, you will also see an improvement.

I found that the only time i do get seizures is when im really tired from a late night or i have pushed myself to far and have become exhausted. A few things that i found have helped me live a more normal life is:

1. make sure there's exactly 12hrs gap between morning and night tablets. (after 12hrs makes me have seizures, even if its 30mins over!
2. Lots of sleep. Make sure you get at least 8hrs a night and try to stick to a regular time to wake up and go to bed.
3. High doses of vitamin b help with the side affects (it really does, esp. anger or mood problems).
4. keep a seizure diary. Whenever you have one, write down everything you did, ate and drank that day and what type of seizure you had. Some of the more odd things I found out is that listening to Kings of Leons - Sex is on fire or, eating a dominos pizza or, drinking over 2 glasses of cola makes me have a seizure the next day!

Hope this has helped a little even if its haven't answered all of your questions.

Take care

Sarah

 

[Fedup]

aggy84

You are probably right the seizure could and probably is because you are super tired, it takes about a month for drugs to build up in your system, but it does depend on the person and the drug/drugs then they will help control your seizures but its finding the dose that suits you best, you probably do not want to hear this but the seizures will never be fully gone only controlled, there are and always will be the chance that we will not have any more seizures, I know and everybody else here knows how you feel, we all feel the same, you need to keep a diary of your seizures, basically everything, not as bad as it seems or hard, the second part I cannot help you with but I am sure there are others here who can.

 

[Nakamova]

Hi aggy84 --

I wish I could give you precise answers about how the medication will affect you, and how it will control your seizures, but everyone is different in their response. Generally, it seems that after a month at a stable dose you should have a pretty good idea of how it's working, and whether it's the right med for you.

It's very possible that the increased pressure in your brain from the excess fluid is making you more vulnerable to seizures. Depending on what parts of the brain are being pressured, you can have a wide variety of symptoms, including changes in behavior or mood, memory problems, attention issues, motor problems, etc. Your neurologist should be able to help you assess what role the pressure is playing, and whether your medication might need to change as result. The process of finding the right medication is often one of trial and error, so it can sometimes take patience and persistence.

There's good info here for helpful ways to be proactive: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[aggy84]

Hey!

Im bitter as well a bit but trying to be as optimistic as possible. I was told it was generalised anxiety and passed from counsellor etc until I begged for a neurologist who immediately said it was epilepsy. I had EEG & MRI scan, I dont want epilepsy but im far happier having an answer.

I suffer from migraines as well and have since I was in school. I tend to find when I have a migraine I'm more likely to seizure.... is that weird? I often find I get migraines or headaches afterwards.

I dont want to keep dwelling on it all because thats going to make me anxious - thus possibly causing more seizures. I find when Im tired or anxious Im far more likely. Losing my driving license has been pretty damned hard.

I did find that I'd have a seizure then Id be more likely to have more because I'd dwell on the fact i'd had one. Purely because with partial/complex partial you cant control anything and are so confused. I'm trying so hard not to beat myself up if I have a seizure, but its really hard. the fact nobody I know nearby has them makes me feel super lonely. xxx

 

[jyearta]

I think it's only nature to be angry when you are diag. with E. On top of that, you were told it was anixety.

I have learned so much in this forum, the people here are understanding (they have been there), they are willing to share all the things they have gone through --not trying to be a Dr, but wanting to help others.

Look in all the differ. forum. you can also search on a topic that interest you.

You are going to be OK.

 

[valeriedl]

I usually huave around 4 seizures a month and about 2 years ago my neuro upped my Keppra dosage. After that I started having around 2 a week. I called my neuro and he told me to stop taking the extra dosage, I was back to normal after that.

If I over exerate myself I'll usually have a seizure. I have to take a nap in the afternoon and if I go a few days in a row with out that nap I'll have a seizure. Also if I do alot and wear myself out (nap or not) I'll tend to have a seizure too. I have to have my sleep. This may have been what brought caused the one you had.