hello out there and help!

[nautilass]

Hi to all,
I started having nocturnal seizures nearly 6 years ago, right after the birth of my second child. I went through hell, depression, sleep deprivation, malnutrition, stress etc etc. I live in a rural town so had to wait 9 months to see a neurologist. His diagnosis took 2 minutes, where he said "more than 2 seizures, you are epileptic". I disagreed with him, but he dismissed me and off I went. I tried Lamictal and epilem, neither of which ever helped, other than to make me vomit and my hair to stop growing. Time has gone by, and I truly believe there is a link between food/additives and my health. My last seizure was on the 19th May 2010, I also had one on the 17th May 2009 and 18th May 2008. The other seizures I had were on 5th Dec 2009 and 3rd Dec 2008. I may be a bit silly, but I never thought epilepsy had a schedule?? I have had none in between that time. My husband has seen most of my 'turns' so I know I am not imagining things - not to mention the chipped teeth, chewed tongue and muscle pain..
Is anyone experiencing somthing similar? I have not been on meds for over a year. Any advice or comments will be greatly appreciated.

 

[douglas]

Well, the one I have heard is, every time you have a seizure, it increases your chances of having another one. One you have 3, there is a greater than 75% chance that you will have another seizure (I am sure there are variants of these numbers) and that is why you need to be medicated; or as some have discovered in this forum, you need to change your diet. I dont know much about the diet (still looking into that) but there are many others on the forum who are much better able to answer that part of it.

From what you have written, did your doc do many tests. Did you have MRI,s EEG, CRT's? Did you try different meds? If not, then you need to try a different neurologyst? It might be hard to do in a rural town, and may require that you I travel to a larger city. (You might even have to move to one.)

By looking at the dates, you seem to be averaging one seizure per year. Thats actually not that bad and seems common. Thats what I used to average. There are some cases out there where people are having multiple seizures all day long and they absolutely have to take five different medications because they cant live their lives because of the seizures. My point being, consider yourself lucky ( I do!) the condition could be much worse.

Anyways, you need to get tests done to rule out other causes of the seizures. Good luck.

 

[Nakamova]

Hi nautilass, welcome to CWE!

Although it sounds like your doc was not particularly receptive, it is the case that the technical definition of epilepsy = having had more than two seizures. Epilepsy is just a blanket term for many sorts of seizure disorders, with a wide variety of primary and secondary causes.

You may well be right about food additives being a trigger -- the link between MSG and aspartame and seizures is pretty cleat, since those additives are essentially the same as "exitotoxins" in the brain, chemicals that provoke the neurons into over-firing. There can be other dietary components as well. Many folks here at CWE have found that changing their diets have led to a reduction in seizures. You read about the diets here at CWE by using the search tab at the top. Two in particular that seem to make a difference are gluten-free, or the Modified Atkins. In addition, being pro-active about your overall health and nutrition can help with seizure control as well.

It's great that you have been virtually seizure-free without meds, but as douglas points out, it's important to be aware of the risk that your seizures might escalate. The more seizures you have, the more likely it is that your brain gets in the habit of seizing, and the less it takes to provoke a seizure.

It is indeed interesting that your seizures seem to occur on an "anniversary". Can you point to anything in particular? Any particular stressors, perhaps associated with the change of seasons? Since your initial seizure happened after childbirth, perhaps there is a hormonal component as well.

I hope you feel free to explore the site, and share your own experiences, as well as vent and chat with other members here. CWE is a great resource and source of support.

Best,
Nakamova