NEW HERE: Seizures / Topamax / Going Natural

[zazazu]

Hello everyone... Thanks for letting me join you all here.

I'm 31 and have a seizure disorder. I was only "officially" diagnosed two years ago. That is a long story. I have absent seizures and was told that I have had them since I was very young. I figure that if I've lived with them this long, then they must not be that much of a threat, right?

I've been through several neuros and have been very sorely disappointed with all of them. I've also been through several meds and had horrible luck with them.

I'm currently on 200mg per day of Topamax and have horrible side effects from it. My last EEG shows that it has stopped my seizures but that it is "slowing" my brain. This scares me as much as the seizures. The other side effects of the Topamax are:

1. Feelings of a "spiderweb" across my face
2. Tingling / numb / dead hands and feet
3. Nauseousness pretty much all the time
4. HORRIBLE headaches
5. Sleep disturbance
6. Severe brain fog
7. Forgetfulness
8. Inability to recall words or what I want to say in conversations
9. Food and drink taste funny

The quality of my life has plummeted since being diagnosed with seizures and being put on medications. I am no longer anything LIKE who I once was. This isn't working for me at all anymore. I'm not
happy or anywhere NEAR happy.

I am going to see my neuro on Monday and plan to tell him that I want off my medication. He won't like this. But, I want to handle my seizures naturally / holistically after I titrate off my medication.
If I did it for 29 years and was fine (and happy and reasonably successful!) then why can't I now?

I've started taking a good bit of magnesium as I've heard that it really helps with stress and anxiety which I have a LOT of right now. Other than that, I plan to see a naturopath very soon, as soon as I
can find a decent one (I'm in Mississippi, near Memphis, TN.)

Just wondering... my neuro's told me to bring in a set of questions to ask him about my seizures, the meds, risks, etc. Any ideas on what all hat I should ask him? What should I have on my list of questions?

Thanks again for everyone's help and support!

xo,

Z ~

P.S. I should also add that I'm severely SEVERELY depressed after a good long while of battling all of this and several other things in my life. I need to get off the med rollercoaster and back on track.

 

[RobinN]

Hi Zazazu - So glad that you decided to join us here. Good bunch to be associated with.
Many have been exactly where you find yourself today.

I too was not happy with what the meds were doing to my daughter. She said the seizures were better than the side effects of the meds. So we are working with other alternative approaches.

Diet, bio-identical progesterone cream, vitamins and minerals and neurofeedback along with therapy.

The depression might be as a result of the meds you are taking. A few months ago the FDA raised the suicidal risk factor on 11 of the top anti-epileptic drugs. We have a few threads about this subject. Dealing with this disorder can put you on the edge too.

I believe once you feel back in control of your situation you will be able to have a more positive outlook. The past few weeks, since starting neurofeedback, I see a my daughter happy again. This treatment has also helped others with absence seizures too.

Good luck and stay strong.

 

[Bernard]

Hi zazazu, welcome to the forum. :hello:

Your seizure pattern sound similar to my wife when she was young although she would have TCs once every couple years too.

She used to have multiple, daily absence seizures. She hasn't had any in over a decade now since she completed 5-6 months of EEG neurofeedback. I highly recommend looking into it for absence seizures.

 

[skillefer]

Hi zazazu! Welcome to CWE! Try checking out the information in the library. There's plenty of info on EEG neurofeedback as well as vitamin supplementation on this site. So welcome to the forum, and feel free to ask any questions.

 

[brain]

:hello: Zazazu!

Welcome to CWE! Absence Seizures aren't no
fun and what you describe is common, part of
it is from the med and part of it is from the
seizure itself.

PS: The "nickname for Topamax" is Dopamax
or Dopey-Max or some of its variation; some
people who have used it have had its side
effects have described it and affectionately
"unofficially" gave it that nickname...

I have Absence Seizures all in my life, and
once of the MAJOR Pains - that I experience
with it is ... loosing my train of thought, at
first, that's what I thought, but Doctors told
me I never lost my train of thought, I had a
seizure, a Petite Mal / Absence.

It's annoying as heck!

HOWEVER - the GOOD NEWS IS ON YOUR SIDE,
as Neurology has taken a look and approved of
Neurofeedback.

 

[BuckeyeFan]

HI

Welcome to CWE

:cheers:

I hope you find the information you are seeking here. There are several knowledgable members and hundreds with various E experience.

Keep working with your neurologist as you move forward with your proposed transition. It doesn't hurt to be watched over by two sets of eyes, they may pick up on something that the other doesn't. You don't have to be on meds to be seen by a neurologist.

Be aware that your E "may" become worse. That is why I feel you should stay in contact with a neurologist. What initiated the diagnosis two years ago if it was undiagnosed for such a long time???

WELCOME!