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Graidyn

Graidyn

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Hello Everyone:shake:My name is Graidyn and I live in New York state. On January 26th 2007 I woke up with the worst headache I had ever had in my life and the bottom dropped out of my life. Within a couple of days I was passing out, having trouble with balance, memory lapses, numbness in my arms and legs, the list goes on and on. I lost my job, and the first neurologist I saw said I was fine so I lost my temporary disability. Finally, this October I got my diagnoses......Epilepsy, Sleep Apnea, Nerve Damage, Carpal Tunnel, and a Migraine Disorder that means I will have this headache for the rest of my life (It hasn't responded to any type of treatment). I have been just under 2 years with NO income at all (I was a store manager making a nice salary before the bottom fell out) and yesterday I finally got the approval for disability. Hopefully they'll send a check soon..LOL! The medication I'm currently on is giving me horrendous (at least I think so) side effects and I'd like to get it checked and I'm not even sure what TYPE of seizures I have since my Neuro basically said "You have Epilepsy, take these, call me and let me know how you're doing and make your next appt. with the front desk". When I ask questions I feel belittled. I'm just going to have to be tough, I know. I was in shock I guess. Everytime I call her to tell her how I'm doing she increases my meds. I left her a message on Friday that I was decreasing them because they're giving me anxiety attacks and chest pains so bad I spent a night in the ER. Anyway, that's me, and this is my life!
 
Hi Graidyn, welcome to the forum. :hello:

Make yourself at home here. We have several discussions about migraines that you might find interesting.
 
Hi Graidyn
Sounds like the beginning of my daughters experience. Hers began with a Tonic Clonic seizure though. On a roller coaster ride for 2 yrs and I finally said ENOUGH

She is now med free and healthier and happier than she was during those first two years. We are using a variety of alternative therapies and something seems to be working.
 
Hi Graidyn! Welcome to CWE. :) As you'll quickly find out, we're a friendly group. Feel free to ask questions, chime in , or just vent in the padded room. Heaven knows we all get frustrated. :)

I would suggest that you start keeping a journal. Write down everything you eat and drink (including when and how much), how much sleep you get every night, any stress you're under, any odd feelings you might get (odd sounds or smells, deja vu, migraines, etc...), any seizures you have (as well as how long they last and what you were doing before it happened). Oh, and if you're a female, when your time of month starts. (Some seizures are triggered by hormone shifts.)

Most of us find that lack of sleep, too much stress, and too much caffeine can trigger our seizures. Or at least I should say, they are the most common triggers. :) Other triggers can include flickering lights, the lightbulbs used in stores, certain patterns, certain smells, and believe it or not certain foods.

Hopefully, by keeping the journal for a while, you'll be able to find a pattern. If you do, then you'll be able to avoid the trigger. For some basic info on epilepsy, feel free to check out the Epilepsy 101 thread in my signature. Also, you might want to check out the Thread on Alternative therapies. I believe it's in the library here.

Also, any question that you have, you should write down and take it to the doctor's office with you. Also, if you have a spouse or close relative near you, I strongly suggest that you take them with you. First, because it will keep them in the loop as far as your condition and how to help you. Secondly, because a doctor is less likely to be a horse's patooty if there is another person in the exam room. :) Also, don't be afraid to ask questions. Everyone should. Nobody should put up with a doctor that refuses to answer questions. It's your body and you have the right to know and understand what's going on. And don't be afraid to refuse to leave till you understand your doctor's answer, and don't be afraid to shop for another doctor if you have to. You are your own best advocate. So be tough. :)

I hope this helped. :)
 
Thank you all for welcoming and for your helpful answers and support! I am still finding my way around...so much to learn! After reading what I have read so far I'm starting to think I need to find a new neurologist :( I'm not even sure if at this stage I'm having seizures or auras and I'm so confused about everything...... I'm hoping this wonderful site will help me find my way.
 
Uh, yeah.

I would say it's time to do the doctor-shopping thing. Remember YOU pay THEIR salaries.

Skilly beat me to giving the advice I was gonna give. WOOHOO! :) But, in a lot of ways, you and I sound a lot a like. I have many of the issues that you mentioned. BUT, I have had them for a much longer amount of time. So, I do understand your frustration.

Do consider dietary changes, too. They have helped me. No joke. I use the GARD diet to deal with my seizure control. And it's much better.

Take care!

Meetz
:rock:
 
It is scary to doctor shop, but worth the trouble. First figure out what you want from your care, and then you will be able to find a doctor to help you.
 
The thing is I was apparently having seizures before without knowing it? (showed on EEG and 24hr EEG) and now they keep upping my dosage and all of a sudden I'm having aura's (or seizures?) up to 6x's a week and they want to up my meds MORE??? I lowered my meds and I haven't had a seizure in 3 days....hmmmmmmm
 
Well, technically

auras are seizures........so that would be why they want to up your meds more....
 
I understand that, but when I lower my dosage I don't have them as often or anywhere near as severe. They upped my dosage to 200mg 2x day and I couldn't function. Period. Plus I was having aura's or seizures (I questioned that above because I'm not sure which they are not because I'm not sure if auras ARE seizures) up to 6 x's a week where before I was only having them a few times every three months. I told my neurologist I was lowering my dosage (not stopping it) whether she liked it or not to see if my meds or the cause and I lowered it to 150mg at night and 200mg during the day and I haven't had a seizure or aura in three days (that I'm aware of) and feel the best I have in a month. I personally find that extremely interesting. Has anyone else had an experience like this???? I should mention that within 2 days of increasing my dosage from 150mg 2xday to 200mg 2xday The horrid side effects I mentioned above began and my neurologist has been brushing them off and put me on Zoloft and said I was having anxiety attacks. Since I dropped my dosage the "anxiety attacks" are also gone.
 
Hmmmm

Have you had any labwork done? Too make sure that there isn't too much in your system? Some people metabolize the meds differently, and perhaps the 200 and 200 doses are doing that. While you shouldn't really drop the dosage yourself, if it worked--and it did--then it's a good thing.

Ask to have some blood work done, and see what the results are. In the meantime, start looking for another doctor. This one just is not listening to you, and does not appear to care what your opinion of your own care is.

YOU have to be your own advocate. So stand up, and do what you need to do.
 
So it's possible that having too much in my system could give me more seizures then?? Because she made it sound like I was off my rocker when I questioned that. I asked her to let me lower the dosage and she said no. I dealt with it. She told me to hang in there it would get better. A week later it was worse and I asked again. She said no again. 2 days later I ended up in the ER for chest pains due to Costochondritis and I said I was lowering them whether she likes it or not. Now I'm better. I think you're all right and I need a new doc and I'll definitely be asking for bloodwork.
 
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Meetz1064 said:
auras are seizures........so that would be why they want to up your meds more....
Click to expand...

However it is well documented that seizures and auras can also occur with an increase in meds, or meds in general. It could be a toxicity issue in your system.
You can help your liver process toxins by drinking lemon juice in water.
 
lemon juice in water? how much?? How often? will this change the amount of medication that I need to take on a regular basis? Are there side effects to doing this? Any documentation I could read up on? What does it do? How does it work? Can I put sugar in it ( I really hate lemons...LOL) :)
 
Graidyn said:
So it's possible that having too much in my system could give me more seizures then?? Because she made it sound like I was off my rocker when I questioned that. I asked her to let me lower the dosage and she said no. I dealt with it. She told me to hang in there it would get better. A week later it was worse and I asked again. She said no again. 2 days later I ended up in the ER for chest pains due to Costochondritis and I said I was lowering them whether she likes it or not. Now I'm better. I think you're all right and I need a new doc and I'll definitely be asking for bloodwork.
Click to expand...

This most definitely happened to my daughter.
She was having 6 a month on medication. When it was completely out of her system she is down to less than one a month.
This still might be a result of kindling. Also nutritional issue are a factor with my daughter.

It took a good month to see the toxic effect of the drugs diminish from her system. (I was told this would happen in 4 days)

I don't see how a doctor can claim to know what is occurring in each individual, and each specific drug, when for a fact, they do not know what the cause of the symptoms are.
 
http://www.coping-with-epilepsy.com/forums/f22/liver-health-4225/

It could change how your body is able to handle the medication, since it helps the liver pathways process the toxins. It could help you to reduce meds.

http://www.squidoo.com/does-lemon-juice-detox-the-liver
http://www.proliberty.com/observer/20040711.htm
http://ezinearticles.com/?Detoxing-the-Liver-Does-Lemon-Juice-Detox-the-Liver?&id=1804276

Also you might consider how the rest of your diet is possibly playing a role in seizure activity. There is much discussion on other neurological sites that say health of the gut is imperative to improved brain function.
 
Thank you so much! What a tremendous amount of helpful information :) I feel like I'm finally getting somewhere!
 
I don't want you to think that lemon juice is the cure for a seizure disorder.
It is only one aspect of creating a healthy environment within the temple with which you reside. That can only help the thoughts, functions, and spirit of your brain.
 
Oh of course not! By "getting somewhere" I meant as a whole, on this site :D Sorry I wasn't clear...LOL I will definitely be trying the lemon juice thing though!
 
Hi Graidyn :hello: Welcome to CWE! It sounds like the last 2 years have been very challenging for you. Finding a good doctor can be a hard thing, but I would look for one who doesn't make you feel incompetent. I was not pleased with the options my son's neurologists gave us. I felt there were better alternatives than medication. I also didn't like how they dismissed me and my concerns. I finally found a doctor who I trust and who really listens to us and our concerns. I now believe that my son's experiences with epilepsy can have a positive outcome. His future looks bright once again and he is med-free.

Make yourself at home and browse around the forums. There's a lot of information here that may help you along this journey. Good luck :)
 
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