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Hello everyone,

I'm a 38 year old mother of 4 kids under 8 years of age. I had 6+ episodes of feeling wierd and 2 of collapse in june 2007 and following an MRI I was told I was having simple partial seizures which were generalising.
The MRI showed a Cavenous haemangioma which is known to cause seizures and possibly fatal brain haemorage. I was in complete denial and half heartedly started on Keppra to stop the seizures. I lasted 6 months and felt miserable the whole time and found it impossibly difficult to be the busy, capable, patient mum I was and saw myself turning into a lazy and grumpy stranger. I blamed in on the Keppra and slowly took myself off it last february.
Two weeks ago I had a seizure which has devastated me. I am so afraid because I promised the kids in the new year that I would be able to bring them swimming, to the park and all the usual after school activities that they need to feel involved in and I couldn't do last year due to driving restrictions. I feel so disappointed and consummed with the need for information.

I have started on Keppra again but have to wait 4 weeks to see the consultant. I want to use these weeks to think about the questions I need to ask him as he is so expensive and I don't have much money. Does anyone know about Cavenous Haemangioma or if it would be possible to control the seizures by my diet as they happen very rarely?

Thankyou in advance
 
Welcome to CWE

I've always found the people here very supportive but best of all it's the only place where I see others who've experienced what I have with regards to my seizures.

I was born with epilepsy but when I was a teenager I had to learn like you to take my meds. I decided that if I cut out sugar & ate well I could just stop taking all 3 of my medications cold turkey & I'd be fine (silly me:rolleyes:). That was the first time I ever had a convulsion & since then I know better.

Different anti-epileptic drugs effect different people in different ways but Keppra has been known to have some severe side-effects. Keep track of your seizures so that when you see the consultant you'll both have a better idea of whether the Keppra is really working of if you'd be better off with something else. You might also want to keep track of what & when you eat, sleep, & various body functions to see if you can find what triggers your seizures.

Now that you've found this site it's a great journey. I've learned more in the last year at this site than I had in over 45 years previous.

Also I've moved your message here in the foyer so that you can have your own introduction thread.
 
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Hello New Thinker - welcome to CWE
I am so sorry that you are having to deal with this. I can't imagine with 4 kids.

Is there any talk of brain surgery to deal with the possibility of hemorrhaging? Do be extremely careful when controlling your doses of medication without knowledge by a medical doctor. You would not want to put yourself into a status seizure that could cause permanent damage. That might be much more devastating than not being able to go swimming or the park. I understand that the side effects are miserable, but think of your babies and work with someone that you trust.

My daughter is being controlled with nutritional changes, supplementation for brain health, and neurofeedback. My daughter also has a brain abnormality called a heterotopia. My belief is that Rebecca was fine for 14 yrs, and that is where I want to return her to.

Nutritional choices can lower your seizure threshold, so the idea is to learn what is causing this and make the necessary changes. It isn't a 100% cureall for everyone, but it has a good record so far, from what I read.

My suggestion would be, that you get to know all you can about your situation, so that you can speak with knowledge to your doctors and make the best choices for yourself, now and in the future.
 
Thankyou EPILERIC and Robin,

Yes you are both right, I need to do some serious study and confront things I didn't want to 2 years ago. This site has already been a comfort to me. I read it for a while and then go away and cry and then come back for more. Reality has hid home big time and I am ready to deal with it now.

Thankyou for your support.
 
Hi NT! Welcome to CWE. :) As you can see, a great place for information and making friends. None of us like getting hit in the face with reality. But better to face it, then to have it bite you in the rear. :)

Now...as for the grumpiness with Keppra...Keppra is known to make people irritable. It's a side effect that got the nick name "kepprage". Lots of people found that a B-6 supplement helped to keep that under control. So if you feel the rage start up again, you might want to try it. If that doesn't work, call your doc and tell him you need to switch to a different med and why.

As for wanting to find other ways to control seizures, follow robinn and erilc's advice. Also, consider using vitamin supplements or diet as a way of lowering amount of meds you need to take...what they call a complimentary therapy.

And finally, wanting to know if your going to be able to do things with the kids. Yes..you'll just have to make some adjustments.. For example, I dont' go swimming alone. So if the kids want to go swimming, invite another adult to go along with. :) Trust me, you can find ways around this problem. :)

Good Luck!
 
Hi NT :hello: Welcome to CWE! I can't imagine what you must be going through. I'm sure it's frustrating to have the seizures return after coming off the Keppra.

There are many alternative methods available for controlling seizures, and most of them have a good track record. Take some time to research your options while you're waiting for your next consultation.

We're currently controlling my son's seizures through diet and nutrition along with other natural therapies. It feels great to know that we have control over what happens and that he's not having to deal with nasty side-effects of drugs.

Make yourself at home and have a look around. Feel free to ask questions. We're really glad to have you here :)
 
Hi New Thinker!

Welcome. You will find this an amazing place for comfort and information.
Regarding Keppra...I had Keppra rage so badly that I did switch off of it after 2 months, but we did try adding Klonopin as a mood stabilizer. It did help a bit. Since you're able to at least function (I did not), the Klonopin may have more of an effect than it did for me.
Meanwhile, keep researching. There are many, many medications out there that you can try, meanwhile taking into consideration your diet, exercise, or other needs.
Best of luck to you in your quest!

Anita
 
hello to skillefer, living fruity, and swimmy,

Thankyou so much for taking the time to reply to my post a couple of days ago. I have alot to think about and reorganise in my life and it is taking some time for me to figure it out. I am on my own when it comes to family support as they live too far away and I live 15 km from the nearest bus route and local shop! I feel a bit isolated at the moment and you guys and this site are more help to me than you can imagin.

Thankyou
 
Hello,
new thinker and welcome to the board.
You never know the Keppra may control you I'm allergic to it.

I've have a Vagal nerve stimulator VNS for my seizures and had it since 2000.

I've had E all my life so I know about the restrictions one can have never driven.
Belinda
 
Hi NT, welcome to the forum. :hello:

new thinker said:
... saw myself turning into a lazy and grumpy stranger. I blamed in on the Keppra ...
Click to expand...

If you are getting too moody while on Keppra, you can try supplementing with vitamin B6.

new thinker said:
... Does anyone know about Cavenous Haemangioma or if it would be possible to control the seizures by my diet as they happen very rarely?
Click to expand...

According to this article:
Cavernous angiomas belong to a group of intracranial vascular malformations that are developmental malformations of the vascular bed. These congenital abnormal vascular connections frequently enlarge over time. The lesions can occur on a familial basis. Patients may be asymptomatic, although they often present with headaches, seizures, or small parenchymal hemorrhages.
Click to expand...

Brain, Cavernous Angiomas

I don't know much about them, but I'd ask the doc if the angioma is sensitive to changes in blood pressure. I'd think that you would want to adopt a diet and lifestyle that keeps your blood pressure under control.
 
Welcome NT!

This is a great board that includes many people with a lot of information. I've found such wonderful help just by reading posts.

I was on Keppra for a period of time and it didn't sit with me. I was moody, irritable (although hubby can atest that I get this way anyway:ponder:), and had trouble with my stomach. So, I came off of it quick. Look into all of the AEDs out there.

Yet, I cannot back both Fruity and Robin enough regarding alternative therapies. Both spiritual healing and vitamin therapy/raw food diet have done more than any AED has. I am still on AEDs, but the goal is to lower. Also, I attend neurofeedback 2x weekly and it has helped tremendously---especially for the anxiety.

So, I wish you luck on your journey---it's truly a humbling one, but worth it.---LMT

BTW--I have 7-year old twins and completely understand your issues with your kids. Everything CAN be done, just differently.
 
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