Howdy from GA

[Momma_B]

Howdy everyone,
I have just found this forum and it looks like just the place where I need to be. I am 38 and just started having seizures last year. However my doctor thinks I could have some growing up as in just appearing to daydream ect however I am doubting that. Right now I am in the waiting game of the recommendation for VNS. Waiting for doctor to fill our paper work and waiting for the call from the VNS people according to the lady in the office at my doctors office. This is all so knew to me. The newness of this of course is accompanied with fear! Looking forward to meeting you all and learning more about all of this
((HUGS))
Momma B

[RobinN]

Welcome Momma B

my first reaction is.... WHAT? You just began having seizures and you are already discussing VNS? Yikes!
I don't have much history, but from what I read, you were not having seizures for 38 years. (daydreaming is normal). You don't state that there was an illness, or an accident. Seizures are a symptom. Your body is giving you a warning.

My daughter began having seizures at the age of 14. It has been a long road but we are controlling them by making nutritional changes, vitamin and mineral supplements, neurofeedback, and NO medication anymore. I had to search for the reason her body was reacting this way, and it is my belief that blood sugar imbalances, food sensitivities, and an adrenal disorder has been the cause. We are now working to heal each system from the inside out.

I would hope you too could find alternative ways to raise your seizure threshold once again, before considering an implant.

[Momma_B]

I have been having them for just over a year now. My whole world has turned upside down. My neurologist has run many test on me and has informed me there is quite a bit of scaring that shows there has been head trauma. I did not go into a lot of detail in the post because it was a introduction and being new I did not want to get in trouble for posting too much! I have been on medication on high dosages. currently I am on dilantin, lamictal and neurontin. Of course not sure of spellings without the bottles LOL. I have been in the hospital several times to having severe seizures. the last time i had 5 in a row and woke up in the hospital with oxygen on me. My doctor after seeing test results feels like the VNS is the option that will help me the most since medications do not seem to offer the control of the seizures like they should. As I stated I am new to all of this and feel so lost and afraid. it took a while for me to agree to the VNS therapy but after that last episode I become so afraid that I agreed to it. I do hope I can find information here that will help me to know the right decisions to make as well as the important questions I should ask. I have learned that I need to write things down as I come across them or think of them because my memory seems to be lessoning everyday. My husband and I drive to the store and part way there I am asking him what road were on. Please understand that while I may not word or describe things exactly as those of you who have experienced it longer may have I am doing the best i know of. I can tell you that she from first test it showed right temperal lobe scaring. if that makes sense.
hope that helps
((HUGS))
Momma B

[Nakamova]

Hi there --
I was 35 when I had my first seizure. It's scary, and it's hard to get up to speed quickly on all the medicines and treatments. Especially with a bad memory! It's likely that some of the memory issues you are having are related to the high doses of all three medications you are on. I agree with Robin, it does seem kind of fast to decide on VNS, and it may be worth getting a second opinion from another neurologist. I haven't had VNS, but there are probably folks here that can give you more information about that. Either way, meds or VNS, it's a good idea to see if you and/or your husband can keep track of your seizures and try to pay attention to some of the potential triggers (like lack of sleep, stress, nutrition, etc.). It can only help.

Good luck!

[Momma_B]

Hi there --
I was 35 when I had my first seizure. It's scary, and it's hard to get up to speed quickly on all the medicines and treatments. Especially with a bad memory! It's likely that some of the memory issues you are having are related to the high doses of all three medications you are on. I agree with Robin, it does seem kind of fast to decide on VNS, and it may be worth getting a second opinion from another neurologist. I haven't had VNS, but there are probably folks here that can give you more information about that. Either way, meds or VNS, it's a good idea to see if you and/or your husband can keep track of your seizures and try to pay attention to some of the potential triggers (like lack of sleep, stress, nutrition, etc.). It can only help.

Good luck!

Thank you so much.. it is comforting to hear that someone else started having seizures at this point in life. Thanks for sharing

((HUGS))
Momma B

[Cint]

Hi & Welcome Momma B,

I'm sorry to hear of your circumstances. Not a lot of fun, I know.

I started having seizures at 23 and they eventually increased. My doctor(s) tried me on many meds, brain surgery, then the VNS, but only after I had experienced seizures for 10 years and nothing else worked. I'd say that part of the memory problem could be due to the medications you're taking. I was taking that much once, so I know what it was like. I certainly felt like a zombie, the side effects are miserable.

I, too, think it is too soon to go for the VNS. If you can, go seek another neurologist, epileptoligist for another opinion. After all, the VNS is NOT a cure all and there are side effects to it also. For me, it is breathing problems, shortness of breath. Plus the only way it works for me, is at the highest setting, and some can't handle that.

And one last thing, what about other testing from lab, other doctors, etc. Sometimes too much medicine can bring on seizures. Just a thought.

[dfwtexas]

I started having seizures last year at the age of 47, welcome to our group~
Jenn

[Momma_B]

aww thank you all so very much --- now wiping tears away for the first time i don't feel alone.. thanks and ((HUGS))
Momma B

[dfwtexas]

I have found I never have to take this journey on my own, not as long as I have this group! I tried a few other sites, but this is my home away from home. This group is the best....we are always here for you! Hugs to you!

[skillefer]

Hi Momma! Welcome to CWE. As you can see, a really supportive group. Feel free to check out the library at this site. It's got some great info on alternative therapies, as well as the standard therapies. Also, I don't know if you have ever done this, but you might want to try keeping a journal. This journal is very seizure specific and is basically a place to jot the following things..

1. Food and drink (what, when, and how much)
2. Sleep (how much each night, and how much for naps)
3. stress (any stress your under...physical (illnesses) as well as emotional...and how you deal with them)
4. OTC meds, vitamins, and herbal supplements (what you take, why, how much, and when)
5. odd feelings (odd tastes/smells/sounds/feelings/sights, migraines, when they happen, how long they last, and what you were doing prior..)
6. Seizures (when, how long they last, and what you were doing prior)

The reason Im' suggesting the journal is so that you can give your doc as much information as possible. Also, you might be able to look back at the info and notice a pattern. For example, "I'm more likely to have seizures on days where I only got 5 hours of sleep the previous night." The most common triggers are lack of sleep, stress, and poor diet. other triggers can include certain kinds of lights, strobe or flashing lights, repeating patterns, hyperventilating, changes in temperature, as well as vitamin and mineral deficiency, hypothyroid, hypoglycemia, and certain food sensitivities or allergies that can develop over time. There's lots more, because each of us is different. But perhaps if you find some triggers, and learn to avoid them, you can reduce the number of seizures, and perhaps even the severity. Feel free to ask questions, chime in , or vent when needed. You're not alone. And we have people here who have had VNS surgery. For some, it worked. and for others, it didn't. Hope this helped.

[epileric]

I guess I'm the exception here. I was born with my seizures.

Good to have you here, if you're looking at getting a VNS you might want to check out this forum first.http://z4.invisionfree.com/VNS_Message_Board/index.php? It's where I went when I was debating asking for one.

[RobinN]

You have done a great job at introducing yourself Momma B. I didn't mean to imply otherwise. I don't like to assume things from posts that are vague.
I do understand how frustrating and scary this can be. My daughter has tonic clonic seizures. What I didn't know and it wasn't explained to me, is that the meds can cause seizures on their own. Some can actually increase seizure activity. We trust our doctors to put us on meds that will "help", but in some cases they can burden the body and actually cause episodes to worsen. I wasn't able to realize this until my daughter had tried her 4th med, and then I looked at the journal months after, and the seizures had begun to reduce in number after the drugs were completely out of her system, and we were well on our way with making nutritional changes.

I notice when she is being very careful with nutritional choices that she does not have seizures. Something as simple as a food sensitivity can cause seizures. Not always immediately either. It can be accumulative. My daughter also is hypoglycemic. So as we attempt to find out why and cure that, we are also at the same time watching blood sugar levels and balancing types of foods or her reactions to them.

The health of the liver, the intestinal tract, yeast burdens, etc can put ones threshold so low that a seizure occurs. This can also cause other illnesses that don't even seem related to the neurological disorder, but can occur from the same cause. It happens over time, and isn't a quick fix. The meds are a quick fix for some, but there is a good % that it is not.

[Meetz1064]

and how do you do, MommaB!

You've met some pretty interesting people, already, I see! RobinN is one of our nutritional gurus around here, she's got quite a bit of information that she can give you......and she's full of information about Neurofeedback, too.

Skilly's advice about the journal is dead on. I'm assuming you've had a decently long EEG to get a proper diagnosis by now, and the MRI of course.

I do understand the feeling about the memory, and the frustration about the seizures, too.

I'm on quite a cocktail of meds myself, (Carbatrol, Lamictal, Topamax and Klonopin) and I've recently been diagnosed with my fourth type of seizure. Memory? What's that? My co-workers have learned to figure out what I'm talking about when I'm trying to figure out what I'm talking about by what I'm doing at the time.

Feel free to vent when you need to--we have a Padded Room for that.

And as for the length of the post......I wouldn't worry about it too much.

Take care,

Meetz


PS. I'm like Eric. I was born with my E.

[Kansas Educator]

Welcome to the forum. I was diagnosed last fall at the age of 53 and know how scary it can be. I too have scarring on my right temporal lobe and honestly don't even know for sure why. My seizures are complex and simple partial seizures and they have been controlled by medicine. I am taking the advice of the wonderful people who posted ahead of me and watching my diet closely, reducing stress and keeping regular sleep habits. I think the advice of others about getting a second opinion is a good idea at this point. It sure sounds to me like you are on a lot of medication and you may also not be on the RIGHT medication for your situation. Hang in there................Roxie