does anyone not take meds?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

K

ks123

New
Messages
1
Reaction score
0
Points
0
hi - this is my first time posting. Just wondering if anyone else hasn't taken meds yet for their seizure condition/epilepsy yet? Here's my background:

I had my first tonic clonic seizure in 2006 when i was 27, it happened to occur within a week after taking an antibiotic for a cold/cough i had. The seizure occurred at my place of work, they called 911 and i was in the hospital for a day or so. The next few seizures I had after that would occur about 6-12 months after the previous one. In the last couple years though, I've come to experience simple partial seizures and get them a couple times a week...and in the last year i decided to start keeping a record of my seizures. I write when I feel dizzy, or when i feel fine and also what I eat..i am trying to find a pattern. It seems that i tend to feel dizzy/simple partial seizures after i've had a few drinks the night before. So I will stop having my wine or glass of beer and see if i start feeling better?

Over the years I've gone to neurologists and have gotten scripts to take meds, but i haven't yet. I wanted to see if I could figure why this is happening (no one in my family has had a seizure)...I am anemic so maybe my body is more fragile.
If anyone has any input it would be much appreciated :)
 
I've been told the more seizures you have, the easier it is to have them again and so on. I didn't want to take the meds either but when I stopped I had 3-4 seizures and my doctor scared me back into taking them. Now I don't sleep. Woo hoo. I really wish there was a cure or something natural...
 
Hi ks123, welcome to CWE!

As mommymela notes above, leaving your seizures untreated can put you at risk for having future seizures. There are ways other than meds to try and control seizures though, and looking for triggers is one of them. If you can identify and avoid them, that can go a long way towards seizure control, though often meds must play a role too. I'm not sure anemia alone would be a seizure trigger (in fact, my AED causes anemia in me), but it may be indicative of some other nutritional or metabolic issue that needs addressing. Some CWE members have found that nutritional adjustments have helped with seizure control, so it might be worth getting tested for deficiencies/food sensitivities, and consulting with a doctor and/or dietician about dietary treatment approaches. Another non-med treatment approach is neurofeedback. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova
 
My son with Lennox Gastaut syndrome has tried over 10 different med combinations between age 1 and 5 but none of them helped to reduce his seizures. He did have many unpleasant side effects. We started him on the ketogenic diet allmost 8 years ago. The diet significantly reduced his seizures (90%) and his EEG improved >70%. We weaned off all meds in the first year on the diet. When meds don't work, he definitely is better off without them. He still is on no meds, just the keto diet.
 
I messed around with my meds and ended up having 3 in a row with the EMTs showing up on the last so no get treatment and stay on it! Learned the hard way
 
I'm on no meds and try to control by diet and staying away from my triggers. I will be trying Neofeedback soon.
 
ks123 said:
I had my first tonic clonic seizure in 2006 when i was 27, it happened to occur within a week after taking an antibiotic for a cold/cough i had.
Click to expand...

Every time I'm giving an antibiotic I will have a seizure.
 
My daughter does not take meds any more.
I learned there is a huge brain-gut connection for some people. This made sense in my daughters situation. Could be a reason why the antibiotics cause seizures or at least could be a connection.

Taking probiotics cleared up a medical issue for my son, that I had been told there was no cure for.
 
We are starting to consider other treatment opens for my daughter also, the meds have too many horrible side effects


Sent from my iPad using Tapatalk
 
I was taken off meds due to a 3 day video eeg showing no abnormal brain activity. i took keppra and klonipin. they did work.still having seizures or whatever they are. My seizures went way up recently due to an antibiotic I was on.
 
ks123 said:
I had my first tonic clonic seizure in 2006 when i was 27, it happened to occur within a week after taking an antibiotic for a cold/cough i had.

I write when I feel dizzy, or when i feel fine and also what I eat..i am trying to find a pattern. It seems that i tend to feel dizzy/simple partial seizures after i've had a few drinks the night before. So I will stop having my wine or glass of beer and see if i start feeling better?

Over the years I've gone to neurologists and have gotten scripts to take meds, but i haven't yet. I wanted to see if I could figure why this is happening (no one in my family has had a seizure)...I am anemic so maybe my body is more fragile.
Click to expand...

Have you been to an endocrinologist since you are anemic? The part of the red blood cell that carries oxygen is hemoglobin. Anemia is caused when there is a lower number of red blood cells in the body and the hemoglobin is lower in the red blood cells, so maybe your anemia (tired blood) is causing seizures...:ponder: Or is your diet low in iron or vitamin B12? And for some, alcohol could lead to seizures, just like antibiotics do for some.
Does the neuro know your medical background, also?

No one in my family has epilepsy either, except me. Like Nakamova said, seizures if left untreated can causes more seizures. I've tried 10 drugs, had surgery and still have seizures + diabetes. I've also taken antibiotics with my AED's and haven't had seizures because of them.
 
I don't take meds. I stay away from my triggers whenever possible, It is important to eat regularly. I also noticed that any darastic change in the ammount of sugar I have makes is sooo much more likely that I"ll have a seizure. So beacuase alcohol has lots of sugar molecules in it I would be very careful about how much you drink.
 
I am not on meds, simply because doctors don't listen to me. My seizure are not controlled and it really sucks. I would take meds if I could.
 
get a new dr. if you have seizures, you need seizure meds. if a dr doesnt understand that then you should not trust him with your health
 
My seizures have become so few, it's only when they have caused by a trigger the last few years. I thought w the meds. making me feel bad, maybe I could come off (slowly) but 2 weeks ago I messed up fixing my daily meds. pill containers, and I started have seizures more often, more sever, lasted longer, so now I know I can not stop meds. It's not worth it.
 
I have only used B vitamins to control my rare type of vitamin B6 (Pyridoxine) Dependent Epilepsy.

My story (posted 02-20-2011): http://www.coping-with-epilepsy.com/forums/f23/40-years-vitamin-b6-11674/

In my lifetime I have experienced two unsuccessful trials of antiepileptic drugs.

The seizures may be all types - myoclonic, clonic, tonic, tonic-clonic or even infantile spasms.
Click to expand...

Taken from the following URL:

http://www.epilepsy.org.uk/info/syndromes/pyridoxine-dependency

I also have Dyslexia and Asperger's Syndrome.

While there are similarities with autism, people with Asperger syndrome have fewer problems with speaking and are often of average, or above average, intelligence. They do not usually have the accompanying learning disabilities associated with autism, but they may have specific learning difficulties. These may include dyslexia and dyspraxia or other conditions such as attention deficit hyperactivity disorder (ADHD) and epilepsy.
Click to expand...

Taken from the following URL:

http://www.autism.org.uk/asperger

The full range of symptomatology is unknown; but can be associated with autism, ...
Click to expand...
Taken from the following URL regarding Pyridoxine Dependent Epilepsy:

http://www.indianpediatrics.net/july2003/july-633-638.htm

Also:

http://www.autism.com/ari/newsletter/203/page5.pdf

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**
 
hi

Hello ,
I did have a few grand mal when I was diagnosed at 11 . I have complex partial and I am sure I have a variety of others . I could understand why u are afraid to take meds especially with side effects that may occure . I have been on almost everymed. that there is . From the way that I see things is that if I wasnot on meds I don't think I would be here . I am on5 meds now going down gradually to 4 . I have had exploritory brain surgury 2 times and the vns 2 times . There is nothing at this point that they can do for me . I would suggust starting at least 1 med . u never know it might work . Good luck , I know it can be very difficult . jenn
 
You must log in or register to reply here.
Back
Top Bottom