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healingsoul

healingsoul

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Hi there,

I'm new to the forum. I'm just looking to share experiences, dieting and encouragement. I, myself suffered seizures as a child; they were not just one type. I had absent, simple and other seizures that really had no name, as the doctors couldn't really figure out exactly what was going on. I also had nocturnal seizures. I suffered sx such as derealization, depersonalization, AIWS and horrendous migraine headaches!
One of my worst seizures is when I was 16 years old. I had a seizure that went on for an hour at least, and after it passed . . . the next few days were filled with anxiety and fear! One side of my my head and body seized as the other side was calm. It was a horrific experience! It's as if the left side of my brain shutdown and violently shook and jerked, and the right side was calm. I thought I was dieing!

That was 21 years ago, as I'm 37 years old now. I still get absent and nocturnal seizures; I also get bouts of derealization and foggy brain. I was on medication but I stopped it back in 2012. I can't say that my diet is the best either . . . but I'm currently working on putting a good diet in place for myself.

That's a summary of my story, and I don't know if anyone can relate?

I'm looking forward to becoming part of the community here on this forum!

TY for having me.
 
Hi healingsoul,

Welcome to CWE! Just like you I have absence and simple partial seizures along with complex partial seizures. I was 10 when I started having seizures 54 now. Before I started having seizures I had wicked migraine headaches and then the seizures started up.
I've been on over 10 different seizure meds then my Dr. put me on the medical marijuana and I'm amazed at how my seizures have decreased it has done wonders. I was on the ketogenic diet for epilepsy a few yrs. ago and it also helped me but I had to go off the diet because I lost a lot of weight while on the diet and I got to thin.
Take my word everyone here has been a great help to me and they are wonderful friends. I've learned a lot from others here on CWE! I wish you the best of luck and May God Bless You!

Sue
 
Hi there Sue,

Unfortunately marijuana don't agree with me too well. I can smoke it some, but there seems to be a limit. My brain starts going into a form of disassociation when I smoke too much of it. That's great that it helps you. Marijuana IMO is natural, and I don't see it as a "drug". It's no worse than the chemical pills they give us.

I can't do the ketogenic diet. IMO, it's just not enough to fill a person up. It's just not for me, as much as I like food. If the ketogenic diet does help someone -- that's great! However, I'm looking for more of a diet that permits sugars and meats. Basically whatever you desire to eat, but has limits. Also, looking for more foods that are natural, yet tastes great!

As far as medication, I was on Klonopin, Tegretol and I think Keppra at one time (can't remember). I no longer take any of these medications. Sometimes, they made me feel worse! Again, if medication helps anyone -- that's great! Lol, I'm not against anything that helps someone.

However ...

It seems not much is for me but a healthy diet of some kind + plenty of sleep.
 
Hi healingsoul,

I'm sorry that the ketogenic diet or the medical marijuana doesn't seem to help you. I've been on all the meds that you have taken and tegretol helped me the most but after taking it for yrs. I broke out with a rash from the drug.

I've been told to cut back on the starch foods and carbs and eat foods high in fat. I was also told to stay away from anything that had nutra sweet (aspartame) like diet sodas because that will cause more electrical activity in the brain. Also I've been told to stay away from anything that has msg in it.

One thing I do eat that is really helpful reducing my seizures is almonds or any kind of nut. I found out that nuts have progesterone oil in them which calm the nerves down especially when a woman is going through her monthly cycle. Another thing that helps me a lot is taking vitamin B12 1000 mcg. once a day and as crazy as it may sound putting coconut oil on my skin once a day. The coconut oil builds ketones up in my body which in turn reduces the seizures.
Here's wishing you well and May God Bless You,

Sue
 
That's interesting about the coconut oil, I didn't know that! I'll have to try that. I did know aspartame wasn't good for me, because I feel sickly after taking it. Just an overall feeling of unwell.

I'll have to try some almonds as well. I eat allot of peanut butter, as I love peanut butter. No clue to as if that helps . . .

Last year, I tried the marijuana several times. A guy I worked with had some and we smoked it. It didn't bother me much at all. It relaxed me and I felt a little buzzed, lol. I tried some from one of my neighbors, and it sent me flying in psychosis land. It gave me a feeling of depersonalization; It wore off after two hours. I wonder why that marijuana made me feel so Koo Koo? Maybe it was bad stuff, Idk.

I like calm and tranquility . . . a place where I can just rest my head and know my brain is at peace, if you know what I mean.

I have been looking around the forum and it seems like a very nice place and a wealth of information.

Thanks for responding. It's good to relate to someone that has a similar history.
 
That's interesting about the coconut oil, I didn't know that! I'll have to try that. I did know aspartame wasn't good for me, because I feel sickly after taking it. Just an overall feeling of unwell.

I'll have to try some almonds as well. I eat allot of peanut butter, as I love peanut butter. No clue to as if that helps . . .

Last year, I tried the marijuana several times. A guy I worked with had some and we smoked it. It didn't bother me much at all. It relaxed me and I felt a little buzzed, lol. I tried some from one of my neighbors, and it sent me flying in psychosis land. It gave me a feeling of depersonalization; It wore off after two hours. I wonder why that marijuana made me feel so Koo Koo? Maybe it was bad stuff, Idk.

I like calm and tranquility . . . a place where I can just rest my head and know my brain is at peace, if you know what I mean.

I have been looking around the and it seems like a very nice place and a wealth of information.

Thanks for responding. It's good to relate to someone that has a similar history.
 
Welcome healingsoul,

Medical marijuana is very different from the marijuana on the street. THC is what gets a person high. THC can also cause seizures. The medical marijuana is very low in THC. You don't get high from it. It's the CBD in marijuana that can help control seizures.

Is surgery a possibility for you. I had the laser ablation surgery two years ago and I haven't had a complex partial since the surgery. I just have occasional auras nowadays.
 
Like you healingsoul, I like to remain calm and not get stressed out. Listening to music helps relax me. I always listen to music when I feel negative emotions (e.g., anxiety, anger, etc.) or stressed. Music can completely change my state of mind. I love music.
 
Thank you, top cat.

Music 36,

Really? I didn't know medical marijuana was any different really from your unlaced, typical weed from the streets. I know that sounds crazy, but the only words I can scrap up to express that questioning.

Does it feel different? In what ways does it vary from street weed? I'm not one to really like "getting high" or wasted. Most medications in my case make me feel wasted. I just like a feeling of relaxation. A natural tranquilizer to get me to that relaxing level. I don't do Benzos either -- bad experience with klonopin.

I'm just curious to know how medical marijuana is different that street marijuana?
 
Hi healingsoul,

I've been using medical marijuana for over a yr. now and it has reduced my seizures to the lowest they have ever been in my life. Last yr. I had only 65 seizures and even though that may sound like a lot that's nothing compared to over 100 seizures I have been having the past couple of yrs.
The difference with the medical marijuana is that the thc level is only 1-2% where the cbd level is very high and that's what helps calm the nerves down. You can't get high off the medical marijuana it relaxes you instead. It was my neuro who asked me to start it.
I buy the mouth spray that has a good taste and I just squirt it in my mouth twice a day. You can buy it on line and they will send it to you by mail. They are also using the medical marijuana for MS, parkinsons, migraine headaches, back pain and much more. If you are interested check out healthyhempoil.com and Charlettes web they have all different types of it. I stick to healthyhempoil.com because if a person doesn't like it they get their money back in 90 days.
Wishing you only the best and May God Bless You,

Sue
 
Yes, I see a neuro . . . I'm currently trying to find another one.

It's interesting about the marijuana . . .
Hmmmmmmm

I may end up asking for it. I do know in NY, it is optional.

The difference with the medical marijuana is that the thc level is only 1-2% where the cbd level is very high and that's what helps calm the nerves down. You can't get high off the medical marijuana it relaxes you instead. It was my neuro who asked me to start it.
Click to expand...

When I get myself a new neuro, I may recommend it, or at least try asking for it. Relaxation sounds good! That's what I'm looking for -- something to help with seizures and relax before bedtime. Lol, I never liked the wasted feeling, but I certainly do tranquility and relaxation.

Nakamove,

Thank you for the links. I believe this is the other diet I had in mind -- just couldn't wrap my brain around the name of it. I certainly check out your links when I have some time. The ketogenic diet is just too little to eat for me! I know some benefit from it, but I have to feel like I have a full stomach.
 
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