Marine wanting off Meds

[jfrazier1221]

I have been seizure free for the last 5 years due to meds. My first seizure was when I was in the Marine Corps and I was 24 years old. I had my second seizure 5 months later because I stopped taking my meds. I have never had any health conditions prior to that.

After my seizures I was honorably discharged from the Marines and I now no longer can fly or be in the armed forces.

Has anyone after 5 years stopped taking meds and been ok? Has anyone ever been misdiagnosed with epilepsy?

Thanks

[hawke86]

Your doctor put you on meds for a reason.

[nana1]

Welcome. Our doctors do get us on meds cause of are seizures. Doctors will take you off them slowly when he thinks you should come off.
You may not want to fly if you had a seizure while flying, you could hurt yourself or kill yourself. Which is why i do not drive. i do not want to have a seizure and be behind the wheel and could hit or kill someone or myself.

[joan]

Hello and welcome. Some folks can wean off of meds after several years of no seizures and some cant. It really depends on you and how you got E. Id discuss it with your Dr and see if you can come to an agreement.

Also many here use alternative therapies to help control E, maybe that will help you as well. There is tons of information on here.

Thank you for your service.
joan*

[Meetz1064]

your neurologist about how your last several EEGs looked. If they were clear, then I would bring the topic up for discussion.........

[skillefer]

Hi jfrazier! Welcome to CWE. As for your question...honestly, it all depends on the person. I went over 10 years with no seizures while on meds and then they flared back up. I'll prolly be on the meds the rest of my life. And to be honest, I can live with that. I'd rather have the meds then have my seizures increase in numbers and possibly kill me. Other people get weaned off of meds after just a few years, and they're fine. Check out the info here...ask questions, make whatever lifestyle changes you need to, chime in, and vent when needed. But make sure that you talk things over with your doc. Just up and quitting meds suddenly can trigger more and stronger seizures.

[brain]

First of all - THANK YOU FOR YOUR SERVICE
and welcome to CWE!

5 years being "E" free sounds considerable;
and I would strongly recommend that another
EEG be performed. It could very well mean that
the medication(s) that you are on -- IS WORKING!



So consult with your Neurologist and ask for
a review over everything!

[RobinN]

Hi jFrazier - WELCOME!

My son is at MCRD-SD as we speak. He just finished T17.
I appreciate your decision to serve. I am frustrated with you that you were hit with this.

I think for the past 2.5 yrs my daughters doctors have been clueless. It has only been through my thorough record keeping and intuition that I have found our current direction of care. My daughters is due to hypoglycemia. Very common, I am told, but with her, the typical blood test did not pick it up. There is something called reactive hypoglycemia and it can be caused by certain foods, or perhaps a combination of foods.

The medication is working to cover up the problem. What ever problem was causing your seizures at age 25 were never discovered. During your 20's I have read the brain goes through another growth spurt. But I also believe that the brain becomes accustomed to have that medication and when you discontinue it... IT doesn't like that.
Almost seems like you need to take a grain at a time away, so it never realizes it is missing something.

Talk to your doctor about what you want to do. Find some support.
I am so sorry you can't fly.
Semper Fi

[dfwtexas]

Back in the late 80s, my father had one grande mal and one tonic and was put on seizure meds for two years and had no reoccurance. They determined his seizures were from a change in blood pressure meds and decided to take him off. His dr weaned him off slowly and he was on moniters during the process. He has been seizure free ever since. Have you discussed with your doctor, what does he say.
I also have E. I have petit mals and my neurologist says I will never be able to go off my meds. It is very important that your doctor is involved in this decision and process. Do not try on your own.

[RobinN]

The fishermen know that the sea is dangerous and the storm terrible, but they have never found these dangers sufficient reasons for remaining ashore.

-Vincent Van Gogh

[CHEROKEE09]

jfrasier1221

you are doing great! congratulations don't push getting off your meds yet let the doctor do it when it is the correct time because it has to be done a certain way,I mean a little at a time slowly. I know I have had my meds changed to many times and they have to take me off of each one that way. and I also want off of my meds too because I have been seizure free for 9 years it will be ten this July 17th.
Lets keep in touch because I know exactly how you feel.

Shonni

[CHEROKEE09]

jfrazier1221,
Nana1 is write too it could mean that your medicine is working, and you don't want to mess anything up, so like it was mentioned you need to check with your neurologist.

My Rheumatologist wanted to take me off of my Tegretol X-R, and I told him he was not going to touch my medicine, only my Neurologist touches my meds,or adjusts them or takes me off of them.

I saw my Neurologist about 3 months ago, and she will not adjust,take me off of my meds because that and the stimulator,whats been keeping me seizure free for the last 9 yrs. 10 yrs in july.

[Eeyore89]

I had my first seizure at 12 and was on my meds for about 5 years and they decided to see if I could function w/o the meds and I almost made it to the mark that I wouldn't have to take them anymore, but right before the mark I had 2 seizures, so I had to go back on my meds unfortunately. I feel your pain, cause I stupidly got my hopes up and then was sorely disappointed when I had to go back on them.

[RobinN]

Eeoyore - what did you do to improve body and brain health when you reduced the meds? Did you find any alternative to stabilize the brain during this time. Did you have a nutritional plan in place?

[Eeyore89]

RobinN, I believe I kept a normal diet with little caffeine and made sure I was able to get at least 8 hours of sleep. I really don't remember it too well as it was a couple years back, but the good thing is that I have had no seizures since going back on the meds and even changing my medicine.

[RobinN]

What is normal for some might be a trigger for others
Just thinking that if one is going to want the body to repair itself after being on medication. If one is expecting the body to function at its utmost best, then it needs to find fuel, and supplementation that has no chance of causing immune responses.

The Standard American Diet is not a healthy one, and it is being proven time and time again.

I am very happy for you. Seizure free is what every one wishes. I just am looking for ways that have no side effects for my daughter.

[jfrazier1221]

Thanks for all of the advise. I have a doctors appt scheduled in April to have another EEG performed. I am just hoping that the readings will come back normal. I don't know what is worse...growing up with E or getting E out of the blue in your twenties. I know I can return into the military and regain my pilot's license if I can go seizure free without taking meds for 5 more years.

Wish me luck on my EEG!

[CHEROKEE09]

jfrazier1221,

What if you where seizure free and the doctors still had you
on medications,and were slowly taking you off.

Would they let you back in?

I do wish you the Best of Luck on your EEG for the best results!

Cherokee09

[brain]

Here's wishing you all the best on the EEG!
Keep us updated!

[BoudicaWV]

Well hello marine I understand your frustration we are a military family back 10 generations. I had a Vagus Nerve Stimulator put in, but I honestly don't recommend it, that is in my case. I was only in the military for 24 days before being medically discharged, well needless to say you know how that feels, my husband stayed in for several years before occuring a injury that they considered catostrophic. Take a breath, take 1 day at a time, were not handed anymore than we can't handle. And just to let you know my sister had 1 seizure due to birht control when she was 17 they put her on carbominazine 100 mg a day and has never taken another one she is now 39. Is there hope yes just hold onto it fight like taught you to fight in the marines thats something you never loose. best of wishes kim