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CagedBird

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Right now I am just mad. I just left the neurologist. I asked him about the ketogenic diet and modified Atkins diet. He didnt have a clue what I was talking about. When I learned that the ketogenic diet is high in fats and low in carbs, I thought well maybe my seizures came back because I dont eat a lot of fats. Last year I quit eating all meats except seafood. I also do not eat butter or drink whole milk. If I cook I use margarine and on the rare ocassion that I eat cereal I drink almond milk. Not saying Im right but just saying if the seizures came back after all these years and the only thing that has changed is my diet, maybe it is my diet triggering the seizures.

 

I know caffeine triggers it. I stopped drinking sodas when I moved on my own. I only drank water so one day when I accidentally made my coffee too strong, I felt "high" and dizzy. Then this year I had 2 mocha lattes with whipped cream the day I had the grand mal at work. Like I said, I asked the neuro but he had no clue. He did not disprove my theory though. I set up an appointment with the hematologist for next month to check my blood (minerals/vitamins) levels. I know the ketogenic diet works best in children and I do not have the patience to follow the exact diet but if going back to eating more fats and less carbs will help the seizures, Im ready.

 

So I told the neuro how the increase in medicine was making me dizzy and really tired. I also told him about the nightmares. I had some very vivid ones this morning. I woke up around 5am then fell back asleep. I was having seizures and screaming for my daddy. I just kept screaming his name over and over. At one point I did not know if the seizures stopped so I tried to straighten my arm against the bed and it started shaking so I knew I was still having the seizures screaming daddy as loud as I could wondering why he had not come into my room yet. Then I opened my eyes and realized it was just nightmares.

 

I told the neuro about what happened last Friday as well. He does not think that was a seizure. He says seizures are only when you cant feel it coming and since my heart was beating fast that was probably just an anxiety attack. SO since he doesnt think Im really having seizures and taking 2000 mg of keppra a day is only making me tired and dizzy, he decreased me back to 500 mg twice a day. My dad does not want me to get addicted to the klonapin so he decreased that as well from .5 to .25. After he wrote the prescriptions, he told me to watch out for more seizures since he was decreasing the medicines. I said well why did you decrease it if it can make me have more seizures? And he said well you said it was making you tired and not working.

 

Im just. I dont even know. He tells me Im not having seizures then tells me to watch out for seizures because hes going to decrease the medication AFTER he just doubled it a month ago. He doesnt know what to do with me so hes referring me to an epileptologist at Duke epilepsy center. But wait, he just said Im having anxiety attacks and not seizures? Exactly. It doesnt make sense!

 

So he also referred me to a psychologist for the nightmares and depression. I wonder what the psychologist is going to say. I hope they can prescribe me something to numb all this anger and pain I get when I cant understand why I have to go through all this.

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Guest lwisman

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You might do some research on dietitians or nutritionists in your area. Doctors rarely have any training in diet or supplements. You have to shop around to find someone who has the training to "think outside the box." Most of the medical establishment still dismisses food.

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Katrina :

 

I know this has to be so frustrating. but keep preserving, and you will find right doctor with right diagnosis. I know saying is easy, but doing is hard. I will keep you in my prayers to get right solutions to your troubles.

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So sorry you are having all these health issues. It is frustrating to have to go to several doctors to get help. Doctors do not have a clue about nutrition. That is why I took Larry to a registered dietician. Dieticians will only give you advice about what foods you should eat. They do not deal with neuro problems. Some doctors can only help with what they know from their "practice". I hope the next doctor you go to will be more helpful in your recovery.

 

Take care,

 

Julie

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always frustrating -- so sorry you are not getting answers.. feels like we are in a maze don't it full of deadends and turns...where is the exit i ask !!

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Katrina, I feel your pain. please dont give up, you are going to find that right doctor who thinks out of the box. I got you in my prayers.

 

God bless

 

Yvonne

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