Questions, questions, questions.

[allie510]

I know this may sound silly but I am very nervous about going to see my new neurologist on Thursday. I was diagnosed in July and given the meds and then went back for a check up in Dec. and was cleared to drive and haven't been back because i disliked my neurologist, and like I wrote before I stopped taking my meds and since i had a seizure in my sleep I know i HAVE to go. Now that I am coming to grips with this and I decided to make another appointment I want to be ready and I want know if there are any questions that I should ask or anything that I can do to better prepare myself ...are there any tests that I should have done?
I have questions about "aura's" but I am very embarrassed to speak on it because it's just very weird to me...
I was wondering if you guys can please tell me a little bit more about your experience with aura's and mood swings and sleepiness ...for ex. when you on the medicine and when your off the medicine.
I wonder about Aura's because I get them all the time and nothing happens. I noticed that since the big seizure I had in July I have periods when I am foggy, have trouble with my speech (like speaking and forming sentences, cutting off in mid-sentence forgetting what I am saying while in a conversation, and more often remembering simple words and names) I noticed that this is becoming a little bit more common then before and was being controlled with the medicine but when I was on the medicine I was experiencing episodes when I was super charged and focused ( i would start cleaning, and felt like i had to move a lot and I was very energetic and jittery, and sometimes for no reason just happy. Then suddenly after a few hours (around the time I had to take it again) I was very tired and irritable and like withdrawn (not wanting to be around people or talking on the phone). So in a nutshell I guess I am wondering about Aura's and if everyone has the same experiences. Also i have been doing research on this medicine (Trileptal) and it seems that it's also used for Bi-Polar disorder...that freaks me out more than a little bit because I don't have an issue in that way. (not to offend anyone!)
onder:

 

[allie510]

I wonder about Aura's because I get them all the time and nothing happens. I noticed that since the big seizure I had in July I have periods when I am foggy, have trouble with my speech (like speaking and forming sentences, cutting off in mid-sentence forgetting what I am saying while in a conversation, and more often remembering simple words and names)
I want to know if this is an Aura? Sorry I don't know how to edit much on this but i was re-reading my post and I realised that I missed a big question I have.

 

[epileric]

For starters I think you should tell your neurologist what you just told us. Be honest about taking/not taking your meds so that he can accurately understand your situation. Of course if he mistreats you because of your honesty find a new neurologist- very simple.

I've had neurologists that were good neurologists but I was somewhat uncomfortable just because of different personalities. Those ones I kept.... I want to address my seizures, not make friends. I've had others that were almost abusive in their attitudes towards me & there's no way anyone like that could have a positive effect so I look for a new neuro.

That's my :twocents:. Meanwhile good luck, hope you get something good out of this appointment.

 

[skillefer]

Hi Allie! Welcome to CWE. I'm betting that yes, you are having auras...and possibly have even developed another kind of seizure. Unfortunately, that can happen when people quit med without doctor supervision. So I'm glad to hear that you are going back to the doc. See, what happens sometimes, is that people will quit their meds, for whatever reason. As the med leaves their system, they might be okay for a bit. After a while though something may come along or happen that triggers a seizure. Auras are basically just milder seizures. So the person begins to have seizures again. If the seizures are not controlled, the brain can begin a phase called kindling...Kindling is where the brain learns to react to certain stimuli by seizing. The seizures can get stronger and occur more often, the longer they go uncontrolled. This can lead to losses in memory and cognitive ability. I understand not wanting to take meds....but if you have issues with a med, then you need to discuss it with your neuro and see if there might be a better dosage or different med that will work better for you. Now, some docs are very open about adding complimentary therapies like changes in diet, alternative therapies, vitamin therapies, accupuncture, etc. You would think that docs would mention those things...but they usually don't. I think it's fear of malpractice lawsuits that keep them locked into the medication mode.

That being said, there are things that you can do to try to minimize your dependency on medication.

1. Get 7 hours of sleep every night. (Your meds were missing with your sleep...so you probably will need a different med.)
2. Eat 6 small healthy meals a day. (By small, I mean they should fit on a dessert/salad plate, and they need to have protein for each carb.)
3. Quit using all OTC meds (especially antihistamines for allergies/colds....they trigger seizures)
4. Quit usuing all caffeine (no sodas, tea, coffee, energy drinks, mate, etc.....)
5. Try shopping the edges of the grociery store...the chemicals added to food to extend the shelf life or look of the food can actually trigger seizures.
6. Develop healthy ways of dealing with stress. (exercise, yoga, walking, painting, writing, etc....)
7. Be HONEST with your doctor. They can't be effective at helping you if you are hiding things from them.

Now, for questions/tests to ask for....

I'd ask them to run a blood test on your hormone levels, your thyroid, and your blood sugar, as well as the mineral levels. Some of us have hypoglycemia, and we find that watching our blood sugar, we have fewer seizures. Also, hypoglycemia and hypothyroidism can trigger seizures. As can diabetes.

 

[allie510]

Does anyone else have Aura's? And what do you experience ...?

 

[RobinN]

We can call it an aura, if we want a label. However, it really is just a name for a symptom. Symptoms have a cause. CAUSE = EFFECT
What you need help with is finding the cause. Then the auras, symptoms, weird feelings, will be eliminated. Might not happen over night. But it sure can happen with careful planning, and monitoring.

Find a doctor that treats the whole person, and iis not just looking to put a bandaid on the symptom. Talking about personal things with a stranger is not easy for anyone. Take your list with you, and begin the dialogue. Understand it will be a process.

 

[Heather]

First of all, if you don't like your neuro, you prob need to find another one. If I had listened to my gut and spoken up, when I didn't like my neuro or didn't like the things they were doing, I wouldn't have had some of the problems I had. I'll never make that mistake again. My current neuro, I've been going to for 6 1/2 yrs. When I talk, he listens. He takes an active interest. If I disagree, I speak up and he doesn't get an ego trip. If I disagree, he asks me to explain why. But there's nothing wrong with that. I don't want him to just go along with me because I said it. And we shouldn't do that either. Doctors aren't gods like "some" of them think they are. They do make mistakes. Not all doctors are good doctors.

You've only been diagnosed since July. It's natural for you not to understand things or not know alot about epilepsy. If he makes you feel stupid for not understanding, then he's got a problem. Doctors shouldn't treat patients like that. You need a doctor that treats you with respect.

Even people who've had epilepsy for a long time, it's hard to understand. Epilepsy isn't like getting the cold or flu. There's no cut and dry symptoms. So things are easy to miss or not understand at times. I've had epilepsy most of my life. I used to have nocturnal seizures and didn't even know it, until the symptoms went away (the way I felt in the morning and throughout the day. Then it clicked.

Also everyone's seizures are different and they don't feel like anything else. So they're hard to describe or sometimes even realize you're having seizures. Mine are weird feelings in my stomach. Closest thing it feels like are butterflies in the pit of my stomach. But it's not. I don't really know how else to describe it because the feeling doesn't feel like anything else. There's not really anything to compare it to.

Until I got on the internet, I didn't realize there were so many different kinds of seizures, side effects, etc. I've had epilepsy most of my life too. So there's always something we don't know or understand, no matter how long we've had epilepsy.

I have auras daily, but I don't lose consiousness. I used to lose conciousness when they were longer, more frequent and more intense. But my CPs. TCs and nocturnals are now controlled. People don't always lose conciousness after an aura.

Being foggy and having trouble with speech could be auras. It could be side effects from meds too. When I was a kid, I took phenobarbital. I stuttered so bad, I could hardly say hello. There were certain words I couldn't say and I had problems learning. I was in learning disabled classes in 1st and 2nd grade. When I got off phenobarbital, the stuttering went away and I was put back in regular classes.

There's alot of people with epilepsy who have trouble speaking and with memory in general. Sometimes it's hard to tell if its an aura/seizure or side effects. If it happens after you take your medicine, it could be side effects. If it only happens once in a while, it may be an aura. I've been lucky and my speaking and memory have been pretty good. The only time I've really had trouble, is when I'm tired. But I think everyone does that when they're tired.

Sometimes you have to decide whether the side effects are worth it. If they make it hard to function throughout the day, you prob need to change meds. If it's just annoyance, you may need to stay on that med. Some meds have worse side effects than others. It's different for everyone though. Some people have more problems with side effects than others. Unfortunately it's just trial and error. You have to see what works, what doesn't, what has bad side effects and what doesn't. You won't know until you try it.

The only thing I know to say, is pay attention and see if there's a pattern. Write them down. See if they happen when you're tired, stressed, the same time of day, after you take your meds or anything else. Being tired and extreme emotions can trigger auras/seizures for most people with epilepsy.

You may need to adjust your meds to see if these things get better or worse. I know that's not fun, but sometimes being a guinea pig is the only way to get answers.

I don't know what else to say as far as auras. Unfortunately nobody's auras are the same, so we can't diagnose it. Only you and your neuro will truly be able to figure out whether they're side effects or auras.

Meds can make people have mood swings. I take keppra. I haven't had problems with mood swings, but it's very common for people that take keppra.

Alot of meds for epilepsy are used for other things. Lamictal is also a mood stablizer. My mom takes depakote, I think for "restless leg syndrome". I think lyrica is also used for fibromyalgia. Alot of them are used for migraines, anxiety attacks and other things. So he may not be putting you on trileptal for bi-polar. If you think he is, ask him. Don't be afraid to ask questions or disagree with your neuro. If he doesn't listen, gets offended or something you prob need to find another neuro. As I said before they don't know everything.

They also need to be honest. He needs to be straight with you as much as the patient needs to be straight with the neuro. I had a neuro, who didn't even think I had epilepsy, even though I've had it most of my life. I didn't find out until I got my medical records and it said "anxiety attacks". She told me she was putting me on zoloft as an AED. Zoloft is an anti-depressant and not used as an AED. It made my seizures "drastically" worse. Seizures is one of the possible side effects of zoloft. Lamictal is used as a mood stablizer as well as for seizures. So she put me on lamictal and zoloft for anxiety attacks, but I didn't find out until I got my medical records.

I'm not trying to scare you. Things like that don't happen to everyone. I'm just saying don't be afraid to ask questions and listen to your gut feeling. If your gut tells you something's wrong, you're prob right and need to speak up. If he doesn't listen, find another neuro.

Hope this makes sense.
Good luck

 

[Nakamova]

Allie --

One good thing to do before you meet with your neurologist is to write down the questions you have and the symptoms you've been experiencing. And write down the neurologist's answers and explanations, or ask the neurologist to provide you with a written record.

Also if you can have a friend come with you to listen to the neuro, that can be a big help too.

Good luck!

 

[allie510]

Thank you guys for your responses I really appreciate your answers!!:woot: