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opusde1988

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Hi everybody, been reading some threads on here. Really surprised there is not more information on the web regarding E and that is how I stumbled here.

I have been denial since my first realized tonic clonic seizure on 3/23/2015, I had another one on 4/30/2016 at a friend's cookout. I previously had a sleep test, and sleep deprived eeg and a scheduled brain mri on 6/16.

I'm currently using a cpap therapy, blood pressure and have been on numerous medications, mostly changed because of change in my personality. Had to drop Aptiom because of the cost and currently taking oxcarbazepine.

This last seizure was a doozie because I felt it come on and was aware it was happening and even said "why is this happening to me?" The headache after lasted 24 hrs. So the switch from denial to accepting has occurred.
 
Hi opusde1988

Welcome to CWE. Sorry to hear of your last seizure, but glad you got the help you needed.
On thing that could be making seizures worse is sleep apnea. And unfortunately, headaches often accompany E after a bad seizure. Some of us even get migraines in addition.

Check out this website for more info on epilepsy and sleep:

http://www.epilepsy.com/learn/triggers-seizures/lack-sleep-and-epilepsy

~Side effects of medications: Some seizure medications can make people sleepy. Others can make it harder to fall asleep. The times seizure medications are taken may also make a difference.
~Sleep disorders: Sometimes people can’t sleep because they have a sleep disorder, like sleep apnea, restless legs or other sleep problems. Sleep disorders can leave a person chronically sleep deprived and tired. It’s not unusual to see people with seizures also have sleep disorders.
Click to expand...
 
Thanks Cint, I definitely get great sleep with the CPAP. However the first one was without a cpap and I was sleep deprived. This second one, I'm not sure what the trigger was, it was a cookout with loud music and lights. I only had 3 (3.2 pt) beers and had eaten chips & queso and a bratwurst.
 
Hi opusde1988.
Welcome to CWE. Sorry you had to find us but this is a good place for help and information.
 
Everyone first wondered how it happened & why god picked them in the start.

But after a year or 2, 2-4 meds and a few more trips to the ER you begin to accept things for what they are.

but here you are among peers. All or most here are ppl with bad E, ones that meds dont control.

So if things dont come out perfect, you have some people to chat with.
 
Hi opusde1988,

Welcome to CWE! I've had Epilepsy for 44 yrs. and I will tell you I used to have wicked headaches after a seizure. You may want to try taking vitamin B12 1000 mcg. once a day and as crazy as it may sound put coconut oil on your skin twice a day. The coconut oil builds up keytones in a persons body and that helps reduce the seizures, vitamin B12 helps calm the nerves.
Start keeping a journal and write down on a calendar what time you have a seizure and the type of seizure you had also take note if you are sick and if there's a low pressure in the weather because both of these can trigger seizures for some people. By keeping a journal of your seizures your Dr. may be able to see a pattern in your seizures as to what time of day/night the seizures happen or what days of the month.
You mentioned that you felt a seizure starting this is called a simple partial seizure also called aura seizures if this happens again tighten up all the muscles in your body and make your hands into tight fists the moment you feel the seizure start and if you do it quick enough it will stop the seizure, my neuro taught me this back in the early 1970's and it has stopped many seizures for me.
I found seeing an Epileptologist was the best thing for me because after seeing many neuros. they still couldn't control my seizures with any meds. I saw an Epileptologist and they found the cause of my seizures, I had surgery to reduce the seizures and I take a lot less med. A Epileptologist specializes in epilepsy. If you cut back on the carbs and starch foods and stay away from nutra sweet that will help you also all of these things can trigger seizures for some people. I found that out after drinking diet soda and having many seizures. I wish you the best of luck and May God Bless You!

Sue
 
Hi opusde1998, welcome to CWE!

Make yourself at home, this is a great site for support and anecdotal advice.

Cheers!
Nakamova
 
That is some really good info Porkette. I was trying to figure out what the aura conversation was about on here. It really felt like dreamland when it occurred and I was totally aware, Prince was playing in the background. There were a couple of nurses at the party so they recognized it and brought me back. It was embarrassing, but what can you do?

I only have a couple cups of black coffee in the morning and don't drink soda. I have cut back on my beer consumption. It's almost like I cannot have fun anymore.
 
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Hello & welcome Opusde 1988
You had mentioned the cost of Aptiom. I was put on Aptiom about 7 mo. ago as a secondary med. It has reduced the intensity of my seizures immensely. I was able to get an aptiom savings card from my doc that allows for a $10 copay after I put it on file at my pharmacy. So far they say that will be all I pay per month from here on out, but I guess we will see. You may be able to get one thru your doc or from Aptiom.com. It may be worth it if the stuff was working for you. Aptiom has been working great for me so far. Hope things are going better for you.
Ed
 
EdBrad, I did have the discount savings card last year and the benefits were nice that you only had to take it once a day with little side effects. But my yr was over and did not think it would be extended. When I see my doc again, I will ask.
 
Porkette said:
You may want to try taking vitamin B12 1000 mcg. once a day and as crazy as it may sound put coconut oil on your skin twice a day. The coconut oil builds up keytones in a persons body and that helps reduce the seizures, vitamin B12 helps calm the nerves.
Click to expand...

However, one must be careful with ketones if they have experienced ketoacidosis, mainly those of us with diabetes. Low blood sugar can bring on seizures, also.

http://www.docsopinion.com/2014/06/02/ketosis/

Ketosis is a metabolic state where the liver produces small organic molecules called ketone bodies.

Nutritional ketosis should not be confused with ketoacidosis, a metabolic condition where the blood becomes acidic as a result of the accumulation of ketone bodies. Ketoacidosis can have serious consequences and may need urgent medical treatment. The most common forms are diabetic ketoacidosis and alcoholic ketoacidosis.

Ketoacidosis

It is important to differentiate between ketoacidosis and ketosis.

When ketoacidosis is present, the blood becomes acidic (pH level drops). Increased blood acidity can have serious consequences, cause coma and eventually death if untreated. However, although ketone bodies are acidic, the body usually manages to keep the acidity of the blood within normal limits during carbohydrate restriction or prolonged fasting.

Unlike ketoacidosis, nutritional ketosis is by definition a benign metabolic state, enabling our body to react to shortage of dietary fuels.

Ketosis Symptoms

Although nutritional ketosis is an adaptive response triggered by lack of external energy resources, it may initially be associated with unpleasant physical symptoms. Fasting and carbohydrate restriction leading to ketosis can cause headache, nausea, fatigue, dry mouth, bad breath, upset stomach, nausea, frequent urination, and lack of mental clarity.
Click to expand...


Porkette said:
A Epileptologist specializes in epilepsy. If you cut back on the carbs and starch foods and stay away from nutra sweet that will help you also all of these things can trigger seizures for some people. I found that out after drinking diet soda and having many seizures. I wish you the best of luck and May God Bless You!

Sue
Click to expand...

Well, I've seen an epileptologist for years, had a lobectomy, the VNS and watch my carbs VERY carefully because I have Type 1 Diabetes. One needs to be careful in what they say works. Different strokes for different folks!!
 
Cink, I am fortunate not to have diabetes. For the most part have not had much go on medically. Very seldom every sick. 45 and up should be interesting though.
 
Accepting E as a Part of Your Life!

opusde1988,
I have had E for 50 years. I know that if a person totally accepts that their E is going to be an actual part of their life, they are going to be able to deal with anything that may come up as a result of their E.
I have mentored many young people or people who have been recently diagnosed. This includes some people who have had such a hig level of denial that they were unable to function in the 'REAL WORLD'.
Accepting something like E is NOT easy, but it is necessary! This acceptance will make the rest of your life easier to live.
I have put my E out of my mind and found that doing that was the best decision I ever made, when it came to my health. The way stress was lowered in my brain was the MOST important, I think. Taking away that stress allowed me to focus on the other things in my life, and do a better job of dealing with them. It also showed me that if I could deal with my E, I could deal with anything that was put in front of me! This raised my self-confidence and showed others that my E was NOT going to hold me back, even if they thought it should! :twocents:

ACsHuman
 
Just wanted to give you a quick welcome! I'm kind of in a bad mood today otherwise I would write more! Welcome to CWE though! (((((hugs)))))
 
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