After 10 years of denial, I'm getting help for my e. Tips?

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Mr.21T

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I had my first seizure i the summer before HS 2004. Since then I've lived in a form of denial that allowed me to do things people with e dont usually do (HS & collegiate sports, driving, nightlife, etc)

Since having a breakthrough seizure 3 months ago, my symptoms have gotten worse and I've had two grand mal seizures lasting more than 10 minutes in the last two months. It's knocked me off track emotionally, professionally & socially and I think it's time I get help.

Now the question is...how? My neurologist has looked to numb me w/ drugs and I've recently discovered a family history of bipolar disorder and stroke, neither of which bode well with epileptic drugs. I'm interested in trying anything other than drug treatment and could use help finding access to programs in my area of west Florida.

Thanks and you guys inspired me that this isn't the end, but the beginning!
 
Also I need some therapy as well, I don't think I ever actually dealt with my issue, I simply dissociated and convinced myself if wasn't real. Parents who have never heard their child's "sad voice" or "angry tone" even though they've dealt with some heavy split may understand.
 
I'm sorry you have to deal with that. Even though I've been getting treatment I still feel like I'm in denial sometimes, especially since my seizures are not grand-mal, I can convince myself that because other people don't know it's a seizure, it is therefore not a seizure.

As far as bipolar goes, you should know that some of the most commonly used drugs for epilepsy are also some of the most commonly used drugs for bipolar disorder. In fact, I'm not a doctor, but I wouldn't be surprised if there are people out there that have been able to control both their bipolar disorder and their epilepsy with the same drug. I don't know anything about the drugs' effect on stroke risk, though.

Have you looked into finding a therapist that offers a sliding scale fee? If you go to psychologytoday.com you can search the "Find a Therapist" feature and look for someone who has a sliding scale.

Also, you might want to try one of the diets that is thought to help seizures. Personally, I know that I tend do much better when I cut grains from my diet. You can check out "diet" subforum in the "Kitchen" for some advice from people who have taken up various diets.

Good luck! I hope you are able to find some good solutions!
 
I've recently discovered a family history of bipolar disorder and stroke, neither of which bode well with epileptic drugs.

What's the problem with AEDs and those disorders? Quite a few of them are used in the treatment of bi-polar, and all the usual ones are used to treat post-stroke seizures, so I don't think you need to worry about them inducing your family history in you. As LG says- you may even be getting a 2fer by taking them.

Until you start on the long path to determine which AEDs will best control you, I'd say you're still a little bit in denial, though I do wish you luck searching for a non-med based system. Of course there's nothing to stop you doing both ;)

Facing up to the compromises you'll need to make until you're controlled- or indeed, for the rest of your life- is the last step of acceptance.

I'm glad you're on the way towards it though. Good luck!
 
What's the problem with AEDs and those disorders? Quite a few of them are used in the treatment of bi-polar, and all the usual ones are used to treat post-stroke seizures, so I don't think you need to worry about them inducing your family history in you. As LG says- you may even be getting a 2fer by taking them.

Until you start on the long path to determine which AEDs will best control you, I'd say you're still a little bit in denial, though I do wish you luck searching for a non-med based system. Of course there's nothing to stop you doing both ;)

Facing up to the compromises you'll need to make until you're controlled- or indeed, for the rest of your life- is the last step of acceptance.

I'm glad you're on the way towards it though. Good luck!
I agree with you on the denial part.

As far as the family history thing I guess I should explain a bit. I'm talking more of the numbing, expressionless, passion-depreciating side effects. I kind of already have a issue w/ that because I never learned how to show affection, be wild, & have fun. Dealing with the side effects would be a hurdle and has been in the past. In my house that was called a manic episode.

Either way I'll be visiting my general practitioner tomorrow at noon to discusss first steps. Any tips or questions I should throw at the doc are appreciated. Just in case I'll be taking a long drive tomorrow morning.
 
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Welcome Mr21T,
The first step is acceptance and that is a Very Big Step. It sounds like you are ready for it.
I was diagnosed in 2006 with E. Luckily, I am well controlled with 1000 mgs. of Keppra. My eldest son has bipolar and I did not realize till just recently that the 2 disorders are very much related.
I am also in Florida. Have been here since 1975.
I hope that you can find a good neurologist to help you on your journey thru this often baffling disorder.
Good Luck!
M
 
I'm talking more of the numbing, expressionless, passion-depreciating side effects.

I get where you're coming from- I think I'd have been very worried about the side effects if I'd have had any idea of them before I started..

The thing is, we're all different. We have different E, and we react differently to the meds. Yes, there are lots of threads on here describing the bad side effects, but then there are also lots of threads which report zero/minimal/short lived effects till the body gets used to them, and that a small amount work wonders and keep the seizures controlled. It doesn't have to be too bad.

If you get started on a med that doesn't react well with you, you don't have to continue taking it. Really, that's meant to be what the wack-a-mole game is: finding the best meds for you- not just the ones that help your seizures..

I think in your case, when you see the GP make sure you explain your history and your deep concern about the meds, and make sure you let them know that it's you who'll ultimately be in charge of your treatment.

Good luck at the GP!
 
Now the question is...how? My neurologist has looked to numb me w/ drugs and I've recently discovered a family history of bipolar disorder and stroke, neither of which bode well with epileptic drugs.
I've had E now for over 30 years along with the depression/bipolar disorder. Bipolar disorder runs in my family, too. My nephew has it and so did my grandfather. And as far as stroke(s) are concerned, my own father had a stroke as did my grandmother (his mother) and two aunts on the same side of my family. But, I've had CP and TC seizures, too, and suffered some very severe injuries due to those TCs. So, my question to you is..... is your life worth saving? People have died due to TC seizures/injuries. Sure, the AEDs do have side effects, some are worse than others, but if one keeps having seizures they will intensify over time and become refractory.

And as said, some of the same AEDs are also used for bipolar disorder, so speak with your dr. And yes, I've also suffered from some of the bad side-effects of meds and had to call my neuro and ask to change the dosage or the med. You are the patient, you're the boss.
 
My sister who has been taking meds for Bipolar is now beginning to understand some what it's like for me to have epilepsy. she's also having seizures and being dumb and driving she takes a AED.But she'll never fully understand unless she doesn't drive and she's seizing like crazyand has to depend on others to get around!!!!!!!!!!!!!
 
The way I see the AED's vs alternative treatment issue is that they can be very complementary. Meds can be a great way to get things under control in the short term but don't be depressed that it has to be forever.
I got my seizures under control with meds but now have been able to back off the dosages by half with diet changes.

Alternative things that have actually worked for me:
Ketosis. Google John's Hopkins and keto diets
Research the GARD protocol (dogtorj.com) I am coming to believe in this more and more the more I read.

Supplements that are real not synthetic (e.g. real sunlight for your vitamin D, Moringa capsules for your C, A, and calcium, transdermal magnesium oil spray, eating liver for your iron, etc.)

Get enough sleep. On a regular schedule.
No booze.
No sugar.
No caffeine.
Meditation.

And did I mention getting enough sleep?
 
Met w/ GP on Wednesday. Referred me to my neuro for baseline testing who can't see me for two months. Other neuros in the area are in similar situations and I'm sure that my brainwaves will either return to normal or set up another seizure before then. Considering seeing a neuropsych to see what they can offer & hopefully start actually dealing with the e
 
Met w/ GP on Wednesday. Referred me to my neuro for baseline testing who can't see me for two months. Other neuros in the area are in similar situations and I'm sure that my brainwaves will either return to normal or set up another seizure before then. Considering seeing a neuropsych to see what they can offer & hopefully start actually dealing with the e

So you don't want to use meds?
 
The first step is acceptance and that is a Very Big Step. It sounds like you are ready for it.

This is probably the most important thing. I too was in denial for quite some time because I didn't want to believe that there was something wrong with me. I still have my moments even 13 years later.

The other big thing that helped me personally was having a support group. This forum is especially helpful because only a few of my friends understand what I'm going through.
 
Gotta love cancellations. I was scheduled to meet w/ my neuro in March, but I met w/ him Monday morning & he changed my prescription from 500mg Depakote to 100 mg of carbamazepine. Never heard of that drug before.


Having first meeting w/ neuropsych today in the middle of the busiest day of the year for sportswriters in America, National Signing Day. Could very well be my last day of work....*shrug*
 
The brand name of Carbamazepine is Tegretol, which is the more common name used on the forums. Think positively - that the new medication will show positive signs and you will be able to keep your job. Let us know how the neuropsych appt. goes!
 
Mr.21

You need to stop the denial and thinking that all people with E are like you, I have Grand Mal seizures since I was a baby and it never stopped me socialising or driving.

I had my first seizure i the summer before HS 2004. Since then I've lived in a form of denial that allowed me to do things people with e dont usually do (HS & collegiate sports, driving, nightlife, etc)

I am sorry to hear it stopped you doing these things.

Seizures do tend to to knock you off track in every sense for all of us.

This site should help explain most of the anti-epileptic drugs available, there are threads as well about different drugs and one on diet. Its important you know about the different drugs you are on.

www.epilepsysociety.org.uk/list-anti-epileptic-drugs
 
Mr.21

You need to stop the denial and thinking that all people with E are like you, I have Grand Mal seizures since I was a baby and it never stopped me socialising or driving.



I am sorry to hear it stopped you doing these things.

Seizures do tend to to knock you off track in every sense for all of us.

This site should help explain most of the anti-epileptic drugs available, there are threads as well about different drugs and one on diet. Its important you know about the different drugs you are on.

www.epilepsysociety.org.uk/list-anti-epileptic-drugs

Of course, you're right but you can understand that doing both of those things can be problematic and stressful while maintaining a traditional adult life. I currently have three jobs and I'm pledging with a fraternal organization so keeping everything in balance is difficult....but certainly possible.

One note about the drug I'm taking is that is has very little side effects aside from being forced to sleep 11 hours. I've cranked up my exercise program (I do 50 squats every ten minutes when watching TV, and run every other day) to counteract the drowsiness, but it's still affecting my job and social life pretty heavy. Especially my sales-related work.

I'm feeling a lot more socially anxious than usual and that's saying something. I'm not sure if it's side effect related, psychosomatic, or if I'm just more in touch with my emotions since I cut down on smoking and drinking.

I have an EEG next Tues and a neuropsych appointment that's supposed to last five hours nextThursday. Hopefully from there I can get some ideas about what's going on.

What kind of testing lasts five hours????
 
I have an EEG next Tues and a neuropsych appointment that's supposed to last five hours next Thursday. Hopefully from there I can get some ideas about what's going on. What kind of testing lasts five hours????
The EEG usually can take 1 to 1.5 hours, including time to put on and take off the sensors. The neuropsych exam might take 3 or more hours, but will probably take a lot less. . When I did it I think it went pretty quickly, about 1.5 hours. It consists of a bunch of exercises that evaluate short and long-term memory, pattern recognition, visual skills, eye-hand coordination, etc. How fast it goes depends on you and the neuropsychiatrist doing the evaluation. You can read more about it here:
http://www.coping-with-epilepsy.com/forums/f23/neuropsych-evaluation-8062/
 
I'm feeling a lot more socially anxious than usual and that's saying something. I'm not sure if it's side effect related, psychosomatic, or if I'm just more in touch with my emotions since I cut down on smoking and drinking.
It sounds to me like you might be more in touch with your own emotions after finally having let them out of the closet after so many years. You kept it all bottled up and stuffed down and now it is coming out into the light of day. But that is a good thing. Let it all out. You'll probably find as I did, that it is much easier to get other people to treat you as "normal" when you actually believe it yourself.
 
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