So the journey begins

[aggy84]

Hi there,

I posted a while ago about being undiagnosed, I've FINALLY been put out of my misery and have been confirmed to be experiencing complex partial seizures. I've been out on 250mg of Keppra, which goes up to 500mg tomorrow.
I'm 27 years old, and have suffered with these for about 6 years with them getting my frequent and progressively worse. I started the tablets last Tuesday and have 2 complex seizures since, usally I'd have one every other day or sometime 2 a day. The seizure have got less intense, and I feel less out of it than I did - but none the less they're still there. I unfortunately get the fear sweep over me, and the dejavu which that teamed with the confusion makes mee feel horrendous. I had my 2nd one this morning, i'd got up was sorting bits out for work, was on the phone to my mum and felt it coming on. I quickly dismissed myself and tried to hunt for the cake stand I was looking for (I figured if I carried on as normal it may go away) it didn't and the tv on in the background suddenly was dejavu. A few seconds later and Im back. Before I'd feel the need to lie down and sleep a bit to forget it all, instead I cant help but worry myself as to why its happening. This I know doesnt help me at all.
I've carried on, made myself a fruit tea and walked to work. I just want them to bugger off basically. I've had all this come in one go, as for years GP's fobbed me off and said I had generalized anxiety disorder. I probably am anxious to an extent but purely from the sheer confusion. Anyways I know need to stop beating myself up from having the seizures but it is so hard. I've just lost my driving license which has been awful, and I feel a bit alone in all honesty. For years I've struggled and finally its been sorted.
Can anyone give any advice? Should I follow a certain diet to help me? what can I do to help stop my complex partial seizures? Are there any success stories on Keppra? How long does it take to work, will I ever be seizure free?

Any advice or help would be great, and any other complex partial seizure sufferers and your descriptions of what happens to you would be great.

Kind Regards

xxx

 

[Fedup]

Aggy84

Welcome to cwe first, advice is hard to give as we are all different in ways the seizure effects us, you are right stop beating yourself up over this, you need to realize this is all part of epilepsy, as for GP'S well a lot of them either do not know enough about epilepsy or are afraid to say it that is my experience, you need to get a diary and write down the day, times, what happened where everything this is very use full when you go see your neurologist, I had to stop taking keppra because it did not agree with me, but that is me, it could agree with you, cheek out side effects of all meds you are on and do not be afraid to ask questions, as for success stories I do not know of one but others might and diet will help, these are only somethings you could do and read up about epilepsy. You need to realise it is not your fault this happened but now you have to learn how to live with it.

 

[aggy84]

Thanks for the welcome.

I need to keep positive, 6 years of dealing without knowing has been hard. I want to do whatever I can to give my body to the chance to win over these seizures. Did you feel confused and low after a seizure? x

 

[Nakamova]

Hi aggy84, welcome to CWE!

It's great that you've found that the Keppra is helping already. It takes awhile for the body to adjust to the med, so give it a month or so after you increase your dose tomorrow to see how you feel. Keep track of any changes in your seizures and seizure control, as well noting anything that might be a side effect. Plenty of people do fine on Keppra, and there's a good chance you will too. If you don't, there are other meds to try, as well as preventive or proactive approaches that may helps as well.

If you keep a journal tracking your seizures, you may be able to identify triggers that are affecting your seizures. Triggers can be things like fatigue, or flashing lights or hormones -- there's a wide variety of factors that can lower seizure threshold, in combination and/or cumulatively over time. Sometimes there is a dietary or nutritional component to seizures, and making changes in those areas can help. One diet that has shown success in treating seizures is the Modified Aktins Diet. More info here: http://www.atkinsforseizures.com/

Best,
Nakamova

 

[aggy84]

Hi Nakamova,

Thank you for such a positive reply. I think my neurologist wanted me on 500mg but started me on a weeks worth of 250mg before we moved up.
I've got PCOS so my hormones are so random, which doesnt help... so I dont know if how i feel is due to hormones or medication.
When they did my MRI scan they picked up the fact my ventricles were holding too much fluid and this was because the tube connecting them near the spinal cord was damaged. Ive got an MRI scan again next week to find out more about it. My mum and I thought surely, that pressure of extra fluid could be the cause of seizures? And surely if i am so irregular that could be why i hold more fluid? who knows! the joys of growing up hey?!
Im looking into diet change though, I exercise and keep fit but I want to do anything to stop them. Do you mind me asking your history with epilepsy and how you control it? xx

 

[Nakamova]

It can be very complicated to unravel cause and effect with neurological disorders. For instance, many women with epilepsy also have PCOS, but they're not sure which comes first, and what role the anti-seizure meds play. Both the meds and the seizures can affect how the brain and ovaries communicate, and disrupt or imbalance the production of estrogen and progesterone, which can in turn cause seizures...

Definitely ask your doc about what impact the extra fluid may be having on your seizures. Extra fluid in the brain can lead to pressure that causes neurological issues -- things like problems with memory or muscle control.

My seizures are the tonic-clonic (grand mal) variety. They came out of the blue 12 years ago when I was 35, and an epilepsy diagnosis was made quickly based on my abnormal EEG. My seizures respond to medication, but I've had quite a few over the years when I've tried to go medication-free (under doctor supervision). Currently, I'm on Lamictal, and it's kept me seizure-free for 4 years (knock on wood). The side effects are "tolerable", but I would still like to be rid of medication some day. I'm saving my pennies in the hopes that I can give neurofeedback treatment a shot some time in the future.

 

[aggy84]

I have asked the neurologists about the extra fluid. As to me that makes so much sense! I was a poorly little girl with lots of ear problems - my GP said that could of been the cause of the damage to the tube in my brain (which wont drain the fluid properly) - The neurologist simply said they were seperate problems....

I didnt have an abnormal EEG it just showed grey areas apparently.

Well done *touch wood* for the seizure freeness! Hopefully i'll have my MRI scan and go from there xx

 

[Nakamova]

Let us know how the scan goes. And don't be afraid to ask the neurologists WHY they're sure the fluid is unrelated to any of your symptoms.