New member with mild epilepsy and major anxiety

[HiCaseyGrim]

My name is Casey, I'm a 25 year old writer and comedy sketch performer.

I had my first grand mal seizure at 18 on the exact day I moved into my college apartment. After that, I had about three grand mal seizures a year for three years, all of which I ignored and avoided seeking medical attention for.

At 21, my seizures disappeared as suddenly as they'd arrived. I went three full years with no seizures and forgot all about them.

Then, in early October of last year, I was to start my new job and, on my first day, collapsed into another grand mal. It was the first time I'd had a seizure in public and, at the hospital, it was my first time embracing the idea that I am an epileptic.

After some tests the neurologist concluded my epilepsy appeared in the temporal lobe. She put me on keppra, which turned me into a depression raging nightmare. I found myself walking into busy streets for no reason. It was terrifying, and I decided to stop using pharmaceutical medications. I've resorted to eating a lot of avocados, coconut oil, and staying hydrated. I've been seizure free for 9 months.

I ought to be grateful for how mild my case is, but my anxiety has gotten the best of me. Since the last seizure I have been afraid to go outside on my own. I am terrified of having another seizure, and sometimes have these "panic attacks" that feel more like seizures.

I am hoping to speak to another neurologist someday soon, hopefully one who won't try to push pills at my problem, as the case is so mild and I've happily given up driving for a lifetime.

So, that's my story. I'm really happy to have found this place, I'm hoping it'll help me fight my fears that I've surely built up in my mind.

 

[MAB]

Welcome Casey.

Sorry to tell you but in my opinion your epilepsy doesn't sound mild at all. You nee to get back to the doctor. There are many different drugs that they can try. You may find a different one that helps you and the side effects might be more tolerable. Continue eating and living e healthy lifestyle but you really need to see a neuro and get back on a different mood. Many people with E also have anxiety and sleeping issues. My neuro has also helped me with those issues.

 

[Cint]

Hi Casey,

I agree with MAB. Having three grand mal (now called TC) seizures a year is not considered mild. And having it classified as temporal lobe epilepsy is the most common form and has the highest risk for mood/memory disorders. Anxiety being one of them. Keppra is known for rage/depression, and like MAB said, there are many more meds to try. Please get in to see a dr. before you have another TC that you could be seriously injured from.

 

[HiCaseyGrim]

Hi Cint and MAB,

I appreciate your insight. I've been doing a lot of research on epilepsy and its medications and I am deterred by the medications due to their side effects, especially since more and more evidence is proving that epilepsy (at least in instances where it doesn't occur as often) can be cured through healthy eating, communicating with your body, and reducing stress. Also, I'm totally uncomfortable with being on any longterm medication during pregnancy, which I hope to be experiencing soon.

Plus, I know that the medications can reduce seizures but not control them, and often people have seizures out of the blue even if they're taking medications. Since my seizures are so uncommon (as I said in my post before I hadn't had a seizure for nearly four years until this last one which occurred 9 months ago, not including simple partials) I think it's more of a dietary thing and the risk gets higher when I overwork myself. I've cut out all caffeinated coffee and reduced my sugar intake.

My next goal is to get health insurance, so I can see a doctor who actually cares about my body as well as her paycheck. I'm also looking into acupuncture, and intend on having a full blood work done after my wedding in two weeks.

 

[Shelley]

Most of my seizures are from anxiety/frustration as well.
It seems when I have a situation that disrupts my daily flow, I tense up and seize.

My medication is unconventional, but it is meant to control anxiety and ADHD first to hopefully control my seizures.
I have also been diagnosed with Aspergers, which simply means that an unexpected change in routine can cause me to 'lock up'.

I also have a pineal cyst that (as far as the epileptologist is concerned) is just there.

 

[Cint]

I've been doing a lot of research on epilepsy and its medications and I am deterred by the medications due to their side effects, especially since more and more evidence is proving that epilepsy (at least in instances where it doesn't occur as often) can be cured through healthy eating, communicating with your body, and reducing stress

I've done a lot of research over the past 30 years, too, and I've never seen or heard of E being "cured", even by healthy eating and reducing stress. Those may reduce the chances of having seizures, but "cure" them, I don't think so.

Plus, I know that the medications can reduce seizures but not control them, and often people have seizures out of the blue even if they're taking medications. Since my seizures are so uncommon (as I said in my post before I hadn't had a seizure for nearly four years until this last one which occurred 9 months ago, not including simple partials) I think it's more of a dietary thing and the risk gets higher when I overwork myself. I've cut out all caffeinated coffee and reduced my sugar intake.

Hopefully your seizures will be controlled fully by diet alone. Sometimes low blood sugar can cause seizures.

My next goal is to get health insurance, so I can see a doctor who actually cares about my body as well as her paycheck. I'm also looking into acupuncture, and intend on having a full blood work done after my wedding in two weeks.

I hope your dr. checks your blood sugar levels, making sure you're not hypoglycemic. That can cause seizures. Also, have him/her check your female hormone levels as that can cause seizures.

 

[HiCaseyGrim]

I've done a lot of research over the past 30 years, too, and I've never seen or heard of E being "cured", even by healthy eating and reducing stress. Those may reduce the chances of having seizures, but "cure" them, I don't think so.

My apologies, the term "cure" was used loosely. I have the flu today and am not at my best. That said, I have known of four people who've stopped medication and focused solely on diet and exercise as well as using calming techniques and have successfully been seizure free for at least a year. I am reminded as well of Danny Glover, who is said to have been able to stop his seizures (I believe for the past 30 years?) with concentration techniques.

Hopefully your seizures will be controlled fully by diet alone. Sometimes low blood sugar can cause seizures.

Yes and I do have hypoglycemia. This is how I avoided admitting to myself that I had epilepsy for so long, I just told people it was a "blood sugar problem".

I hope your dr. checks your blood sugar levels, making sure you're not hypoglycemic. That can cause seizures. Also, have him/her check your female hormone levels as that can cause seizures.

Yes I'm also aware of this. I'm really looking forward to getting a full work up and also taking a look at my magnesium levels as well as any potential food allergies I've been ignoring. I suspect I'm going to find out that dairy and I don't get along, which will be most unfortunate. I was gluten free for a few months but I didn't notice any direct change, however since my fiance is allergic to gluten I'll probably go back to gluten free and see if over a long period of time I notice any differences.

I also want to clarify that my stating I've done a lot of research was not intended to belittle any of your opinions or experiences, as I'm aware I'm still pretty new to my condition. But I also wanted to make sure it was clear that I'm not in denial anymore, and I'm not avoiding or ignoring my condition. I do believe some of my anxiety is caused by my epilepsy, but I also had a very traumatizing childhood with my mom in and out of the hospital for years and my dad going into a very severe depression, which triggered a "life is always terrible" attitude for me at a young age. I tend to expect the worst out of everything, always. But the exciting thing (for me, at least) has been figuring out the difference between my genuine panic attacks and panic attack-like seizures. I've noticed with panic attacks it stems from me thinking about terrible things for long periods of time, whereas the seizures happen quite randomly, and usually in very hot weather.

Speaking of, it's summer right now and UGH I hate it so much! Lol. I've read about overheating being a trigger and since most of my seizures have been in the summer I'm a believer.

 

[HiCaseyGrim]

Most of my seizures are from anxiety/frustration as well.
It seems when I have a situation that disrupts my daily flow, I tense up and seize.

My medication is unconventional, but it is meant to control anxiety and ADHD first to hopefully control my seizures.
I have also been diagnosed with Aspergers, which simply means that an unexpected change in routine can cause me to 'lock up'.

I also have a pineal cyst that (as far as the epileptologist is concerned) is just there.

Gosh you're dealing with quite a handful! You know, I'd never known of pineal cysts but now that I'm reading about them...such a strange occurrence. But your epileptologist doesn't think it's lending a hand to your seizures?

 

[Belinda5000]

Hello Casey,

I'd seek another opinion that neuro doesn't sound to great in mind.

Do you have any hosp/univ near you you?
Do you have any neurologist near you at all that you could try? I'm im in a big city so 'Ive gone to all kinds of different neuros.

 

[HiCaseyGrim]

Hello Casey,

I'd seek another opinion that neuro doesn't sound to great in mind.

Do you have any hosp/univ near you you?
Do you have any neurologist near you at all that you could try? I'm im in a big city so 'Ive gone to all kinds of different neuros.

I'm definitely gonna find another one, this one was terrible. I went over her records when I had them pulled for a different doctor's visit and she got ALL of my information wrong. It was like she wasn't even listening.

There are definitely a few options out here, the only problem is insurance, as I can't afford to go without it. But my fiance is getting a promotion soon (!!!) so hopefully after that I can finally go in and get all of the medical attention I need.

 

[Shelley]

pineal cyst

Gosh you're dealing with quite a handful! You know, I'd never known of pineal cysts but now that I'm reading about them...such a strange occurrence. But your epileptologist doesn't think it's lending a hand to your seizures?

I'm not seeing him anymore. Nor am I seeing the psychologist that diagnosed the ADHD and Aspergers.

I see me primary care physician, and she is keeping a close eye on me.
My cyst is supposedly small enough to be ignored. The stuff I find online is not very good. (I've seen videos stating that the fluoride in water and toothpaste can cause cysts)
I should look again, as it is a cause for my concern.

http://en.wikipedia.org/wiki/Pineal_gland_cyst

 

[valeriedl]

Stress and depression are two major seizure triggers for me. If any of those things are going on in my life pretty much all we can do is just wait for the seizure to come. There's almost no stopping it from happening. Caffeine is also a trigger for me so I try to stay away from it as much as I can.

You may need to take medicine for the rest of your life to help control your seizures. When I was first diagnosed I was having a seizure almost every other day and sometimes more often. After finding the right medicines, and I also have a VNS implant, I'm having around 7 seizures a month. I don't know if you want to call this controlled but this is how I've been for about the last 7 years since we've gotten all this figured out.

Finding the right dr/neurologist is something that you have to do. You need someone who will work with you and help you as much as they can. When I was first seeing my neurologist, when I was having a ton of seizures a month, I'd see his nurse practitioner every other visit. She didn't listen to anything I had to say, answer any of my questions or ask any of her own. All she told me that the only reason I was having so many seizures was because I wasn't taking my medicine. My husband, mother and I said that I was. I had my pills put in a daily pill case and an alarm set on my cell to make sure I took them on time. Finally after one visit I blew up in the office and haven't seen her since.

There are many people on here who have had babies with no problems. This is something that you want to talk to your neurologist and probably gynecologist with to find out more about.

I hope you find help on here, I know I have!

Congrats on getting married too :yippee:

 

[gigi]

welcome!

You sound like a smart young lady! When we have seizures as an adult, we are given the diagnosis, unless there is a removable problem then that diagnosis remains in place. "Idiopathic" means no known cause. Medication is the lesser of two evils,especially if you are having t/cs. I have had this for 47+ years now. Being healthy is a great start!! If you want babies, medication is important. I have two healthy kids. Took Dilantin during pregnancy. I went 8 years w/o a seizure, this disorder likes to sneak up on you! Best of luck with your impending nuptials!

 

[Cint]

There are many people on here who have had babies with no problems. This is something that you want to talk to your neurologist and probably gynecologist with to find out more about.

Congrats on getting married too :yippee:

Yes, I have two grown children, a daughter, healthy, happily married and educated, and a son, who finished law school last year. I was taking Dilantin during both pregnancies and both kids are now happy and healthy. But when they were growing up, they witnessed many seizures.

 

[masterjen]

Since you are seeking a new specialist, I'd just like to add that you consider an epileptologist rather than a neurologist. The extra training an epileptologist has, plus the fact that his/her practice is focused on epilepsy, generally makes this specialist a more favorable one to see rather than a general neurologist whose practice is focused on a "bit of everything" neurological.

 

[walkerjm3]

You know, Valerie, depression and stress seem to cause mine as well. Doesn't help that my medication was causing more depression. Such a vicious circle.

 

[Nakamova]

Hi Casey -- welcome!

Like you, my tonic-clonics also started as an adult, for no obvious reason. But they have always been responsive to medication. They are currently fully-controlled by Lamictal, and I have been seizure-free for the last 6 years. Lamicta has a reputation for having fewer cognitive side effects compared to other meds. It may also be less likely to cause mood-related side effects, perhaps because it is also prescribed as a mood stabilizer for bipolar disorder.

The only lasting side effects I've had are dry mouth and eyes. Each person's experience with meds is different, but if you do end up trying medication again, you may want to ask your neurologist about Lamictal or other meds that can work differently than Keppra.

I hope you remain seizure-free. If diet and behavioral changes seem to have made a difference in your seizure control that's terrific. Generally speaking, finding ways to be healthy overall can also potentially help reduce or seizures or lessen their aftermath. You might be interested in these threads:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova

 

[mrsmimby]

Hi Casey, Lots of good advice already given here. I have helped my son a lot via diet, and also know of people who have ceased their seizures via either taking things out of their diet, or adding things in (or sometimes both). Modern typical western diet is not always a blessing for those with seizures. I'd like to recommend a good resource for further advice on dietary advice for epilepsy (hope it's ok to do so here) it's a FB group called "Diets For Epilepsy" Good luck on your journey.

 

[kaelieh]

After I first got diagnosised I took meds for two and half years and weaned off them under medical supervision since I had been seizure free, I was seizure free for almost four years before they came back with high frequency. I've had fewer grand mals than you, and thankfully I seem to be very well controlled with medication. But I'll never go without meds again because once your seizures come back after being going for more than two years you'll probably always have them and you'll have no way to predict when they'll occur.

If you're having grand mals and simple partials, I would be leary of just changing you're diet. Moreover, I would hold off on pregnancy, having a grand mal during pregnancy poses a higher risk of harm than most morden anti-seizure meds do.

 

[lindsayschu2]

I also hope you remain seizure free through the techniques you are using. I went med free for a long time. I got pregnant while not on medication. One thing to note, is that pregnancy itself can promote seizures in some people--I had a big rise in complex partials while pregnant (and had had no seizures at all for 5 years prior) and had a tonic clonic in my sixth month. The risk to the baby from my not breathing during the seizure was considered greater than the risk of the meds themselves, and so I went on medication. I know it sounds like a lot of people here are pushing you toward meds, but understand that no one has an 'agenda' and are only here to help. I had many months of fear on my end wondering what the unknown number of minutes without oxygen may have done to my developing baby, I do know there are safer meds now for pregnancy. Just one thing to consider.