Grand Mal Seizures and I'm 17

[17DealingWithSeizures]

Has anybody on here got a treatment for it yet?? Like surgery?

[Silat]

Surgery is a pretty big deal, because it can't be reversed after it's done. I'd certainly look for more options before you resort to surgery. Because of its permanence, I think it should be considered as a last resort... especially since you're 17 years old. Personal opinion though, and others may disagree.

How have medications been working for you? What have you tried and how have they worked?

Also consider getting some blood work done to check your levels of minerals and vitamins. Defeciencies in vitamins and minerals can be a massive trigger, and can amplify and aggrivate E very easily. Diet changes and some vitamin/mineral supplements can help you out if that's a problem for you.

Have you checked your blood suger and insulin levels before?
Low/high bloods suger can influnece seizure activity as well. If that's a trigger for you, simple diet changes can make a load of difference, especially in the long run. Also, high levels of insulin in the blood can/will induce seizures in anyone, not just people with E.

There are lots of other options to consider as well. Glance around the site and read up on them in your free time, if you have a chance. If there's a specific topic you are interested in, click on "Popular Tags" on the left side of the main CWE screen. It'll show you a list of the tags, and bring up a search bar. You can use the search function to look up just about any topic you'd like.

[Cint]

Surgery is a pretty big deal, because it can't be reversed after it's done. I'd certainly look for more options before you resort to surgery. Because of its permanence, I think it should be considered as a last resort... especially since you're 17 years old.

It should be considered a LAST resort! I had a left temporal lobectomy done after trying numerous meds, to no avail. But I was 30 years old when I had it done. I was seizure-free for 14 months and then they came back worse after surgery, not to mention depression and forgetting who I was for awhile. I had to go thru therapy with a neuropsychologist to help with that. It cannot be reversed and there are consequences: not 100% certainty that it will work, may make seizures worse, memory loss, even stroke. I've known several who had a stroke while undergoing epilepsy surgery.

Have you checked out this website:

http://www.epilepsy.com/Epilepsy/Surgery

[CQ:)]

Has anybody on here got a treatment for it yet?? Like surgery?

Hi 17,
Welcome to CWE. Would you mind telling us more about yourself, eg - Do you take both partials and tonic clonics?, what medications have you tried?
I believe each person with epilepsy is different, we all react differently to meds & all try different ways to control our seizures, whether it be with meds alone, or other options like diet change, neurofeedback or VNS & surgery.

Surgery is a pretty big deal, because it can't be reversed after it's done.

It should be considered a LAST resort! I had a left temporal lobectomy done after trying numerous meds, to no avail.

with Silat & Cint,
Surgery is a real big deal & really should be considered a last resort after the person has tried other methods to help control their seizures. For some people the surgery will be success & for others it will not.
I tried 5 different Anti Epilepsy Meds, none of which controlled my seizures so my neurologist suggested having surgery to help with my seizures.
I had left front temporal lobe surgery last year & for me so far the surgery has been a success as I haven't had any seizures since the surgery. Even though I have had the surgery I will still have to take meds for the rest of my life, just a much lower dose then what I was on before surgery.

[Cint]

I believe each person with epilepsy is different, we all react differently to meds & all try different ways to control our seizures, whether it be with meds alone, or other options like diet change, neurofeedback or VNS & surgery.

In addition to my lobectomy and numerous medications, I now have the VNS and on occasions, I do have a complex partial seizure. Before the VNS, I was having complex partial's and secondary tonic clonic's. For some, the VNS is worthless, and for others, like myself, it works.

[17DealingWithSeizures]

I have grand mal seizures. In fact I had one this morning while straightening hair. I've had A LOT. I have them while I sleep too. It's messed with my brain.
I have Photosynsensitive seizures.

I take Lamictal, Vimpat, and I just got moved up to 3,000 mg of keppra which I have gotten most of the side affects for. I see a specialist in Aug who will talk to me about surgery.

[DadofTwins]

Surgery is a last resort!

[Nakamova]

Hi 17DealingWithSeizures, welcome to CWE!

Surgery is usually discussed as an option when medications fail to help control the seizures. but it does bring its own set of risks and, like the meds, it may not be 100% successful. You might want to look into neurofeedback -- it has helped some folks with refractory seizures, and doesn't have the risks or potential side effects associated with surgery. The downside with neurofeedback is that it isn't covered by most insurance plans, and depending where you are located it can be difficult to find a practitioner. In addition it requires multiple sessions (at least 20) to be effective. You can read more about NFB here: EEG Neurofeedback

It's great that you have identified one trigger (photosensitivity). Since you are having seizures in your sleep, it sounds like there may be other triggers as well. Do you keep a seizure diary? Sometimes it can help pinpoint particular foods or activities or times of day that make you more vulnerable. More info about being proactive and tracking your symptoms here: Proactive Prescription for Epilepsy

Best,
Nakamova

[Cint]

And another drawback of neurofeedback is that it is very expensive and you need to be consistent with those multiple sessions to experience any results. That isn't 100% effective, either, IMO.

After my lobectomy, I started having nocturnal seizures, also, so I think it will be good for you to go through the pre-op testing just so they can pinpoint where the seizures originate and then decide what is the best treatment for you.

http://www.epilepsy.com/EPILEPSY/surgery_preassessment

PREOPERATIVE ASSESSMENT

Success rates for epilepsy surgery are constantly improving, and advances in preoperative assessments are largely responsible. Proper patient selection and a thorough presurgical workup are the cornerstones of surgical success.

If a review of the person's experiences with seizure medicines shows that adequate tests of at least a few different medications have not succeeded in controlling the seizures, then the person may be referred to a specialist for a preoperative (or presurgical) assessment.

The preoperative assessment has two general objectives:

-To maximize seizure control after surgery
-To minimize disruption of normal brain functioning.

The number and type of tests that make up the preoperative assessment will depend on the type of surgery being considered. General objectives of the tests include:

-Assessing the person's current status
-Determining the exact location of seizure activity

Evaluating the surrounding areas of the brain to determine what kinds of problems the patient might experience after surgery.

[Westwind]

From the meds you are taking, it sounds like there are more than Grand Mal (tonic clonic) seizures going on. Those are usually generalized seizures. Surgery is for focal seizures. You'd want to have a video EEG to confirm the type, and confirm whether or not surgery is an option.

But as has been said, it's a last resort, and results vary.

[Cint]

From the meds you are taking, it sounds like there are more than Grand Mal (tonic clonic) seizures going on. Those are usually generalized seizures. Surgery is for focal seizures.

Where did you get that info?

I have complex partial seizures that may or may not go into secondary generalized seizures (Grand mal). A fancy way of saying tonic clonic seizure. And complex partial, simple partial are the same as focal seizures.

From www.epilepsy.com:
http://www.epilepsy.com/EPILEPSY/types_surgery

The kind of seizures you have and the part of your brain where they begin will determine whether surgery is likely to help you. The same things also will determine the specific type of operation that you should have.

There are two main types of brain surgery for epilepsy. The first, and by far the most common, is called resection or resective surgery. In this type, the surgeon removes the area of the brain that causes the patient's seizures. (The name of the specific procedure generally ends with "ectomy," which means removal by cutting.) The most common example of this type of surgery is the temporal lobectomy, in which part of the temporal lobe of the brain is removed. The goal of resective surgery for epilepsy is most often cure of the seizure disorder.

The second, less common type of epilepsy surgery interrupts nerve pathways that allow seizures to spread. The term disconnection is sometimes used to describe it. One example of this kind of procedure is called a corpus callosotomy. (When you see "otomy" at the end of a word, it means that that thing is being cut.) A procedure called multiple subpial transections is another example of this type of surgery. This procedure may be helpful when seizures begin in areas that are too important to remove. Disconnection procedures are generally thought of as providing relief, but not a cure.

[Westwind]

*nods* Yeah. They need to know the focus of the seizures in order to be able operate.

In my case anyway, there is no focus point, it hits my entire brain at once, so no surgery option. For my neurologist and epileptologist, that was the point of my having a video EEG. They expected it to be focal, and therefore operable. But it was generalized with no focus, and therefore no surgery option.

[17DealingWithSeizures]

I would really like surgery.
I take keppra and I have all the side effects. I take 3000 mg of it plus other medicines.
The medicine has even caused me to loose weight. My seizures get worse. I get injuries from them.

[seizing more]

I was diagnosed 8 yrs ago with E. I awoke to the paramedics working on me, and i didn't have a clue as to why. I've been seeing a new neurologist since I have a new health care policy. Surgery has never been brought up until the past few months. I'm not buying it yet, I am listening. Meds are tough on me, I'm having a hard time gaining any control and the seizures are brutal. But I'm with you when you say it's irreversable. I've had a few lumbar spine surgeries & any major surgery is no walk in the park.there are no guarantees, I've read the pros and cons.....it's scary either way, the med route and the surgery route.

[Fedup]

HI 17DealingWithSeizures

I have grand mal as well and got one last night, I refused the surgery because there are no guarantees and its just me but the keppra did not agree wit me I got a lot of side effects and told my GP who informed my neurologist so I came off them there is some good advice here and they are right especially diat