new to the forum and very confused

[nixbrigade]

hi everyone...
i am very new to this whole life and quite frankly i'm very scared. i am 37 and had my first seizure last december. i was seen by a neurologist and took some medication but that was short lived. just last friday i had another seizure... out of the blue. luckily my husband was with me but it was the second time i've woken up in the ER. my neurologist just doesn't seem to be saying anything more than "these things happen". i just don't understand why it's happened. i have an mri coming up and i'm thinking about getting a second opinion with a doctor that seems mildly interested in my health. i'm just confused and upset with it all. so much unknowing. thanks for taking the time to read this. i am very happy to be here.

 

[RobinN]

Hi nixbrigade - Welcome

It is difficult when we don't know why the seizures are happening. The problem is... the experts don't know WHY. Some of us can dig around and keep journals and over time get a pretty good idea as to why it is happening. However, to take a conventional doctor along that journey with you would be mighty expensive. So... they give you some drugs, and increase the dose if you can tolerate it. If not... they try another med on you, and play with the dose. After about 6 meds over time you have burned up about 5-10 yrs. They might suggest surgery at that point, if you are a candidate. However, they won't promise you that this will be the answer either.

What I did for my daughter was, try four meds. Bad results. At least not ones that we were willing to live with. She was 14 when her first seizure occurred. I found some HOPE here online. A vet that suggested nutritional changes. You see, the first neurologist that we went to, said diet had nothing to do with seizures. He also said hormones didn't either. WRONG

There is much evidence that nutrition can play a huge part in a seizure disorder.
You won't hear that from a conventional doctor because they are not taught about nutrition and what role it plays in neurological disorders.

There is a lot of information here at CWE if you are interested in alternatives.

We are also glad that you joined us.

 

[dfwtexas]

I can understand, I started having seizures about 1 1/2 years ago at age 47. This forum has been a Godsend to help me understand. Seizures are hard to get a grasp on as there is so much variation from person to person. But with the large community on here, it makes it easy to find someone that understands your situation. I have to say I learned a lot more on here than I did from my doctor.....but it's hard to learn everything about seizures in one appointment. Generally you are not considered to have eplipsy unless you have had 2 or more seizures. What type of medication are you on, are they going to do EEG with MRI. We are lucky to live in America where medical tests are readily available and we have the freedom to pick a doctor that makes us comfortable with our diagnosis and treatment

 

[cjole]

Welcome!

Hi there, and welcome! I am about in the same boat as you. However, my first seizure was about 7 1/2 years ago.(I would have been about 38 then). I was (and quite frankly still am) very confused. They ran a whole bunch of tests, which came back showing absolutely nothing. I tried a bunch of meds, was allergic to a few, and had bad reactions to others. I ended up on Tegretol. I took it religiously for 7 years, and had no further problems. This last year, I decided, on my own, to quit the meds. I SLOWLY weaned off them, cuz I was scared. I had been off them completly for about 3 or 4 months, and had another seizure this last Nov. My seizures, btw, are Tonic/clonic. I went to another neuro, and started on Keppra, had a breakthrough in Jan., had my meds upped, and have had no further problems. It's just so very confusing as to why and how this all started. I know how you feel waking up and having people poking and prodding, and being so very confused. I do also have on occasion, a deja vu kind of thing, which I guess is some kind of seizure related thing to, but that has calmed done lots since Jan. also. It has definately changed my life, and I am so very frustrated with everything. My job has been affected (I have a union job, and we have a good contract which has been very helpful in keeping me employed, but I have been forced into a job I don't want and don't enjoy). I have to report to the state every six months from my doc stating my treatment, and if I am complying, and if I have had any seizures etc. It's just all very annoying, and I have become very moody and very depressed of late just trying to get everything figured out.

Anyway, I hope you know you're not alone, there are ALOT of people here with good advice, and it's just a good place to come when you have to say something to someone who REALLY understands how you're feeling.

Hope you have some luck with finding answers, and again, welcome!

CJ

 

[nixbrigade]

thanks all for your time and thoughts. i am enjoying all the information that i'm finding and look forward to learning more. i appreciate all the support and hope i have the chance to give it back.

 

[Bernard]

Hi nb, welcome to the forum. :hello:

Unfortunately, a great many people never get any definitive answer as to what is causing their seizures - even after exhaustive testing.

As you are relatively new to the epilepsy scene, I'd recommend the following starting points:

epilepsy 101 threads

 

[Nakamova]

Hi nixbrigade --

I was 35 when I had my first seizures. Out of the blue. Woke up in a hospital with no clue how I got there. I wish I had known about this site then. There's so much great information here about meds and the alternatives. I will probably never know exactly what caused my seizures (although I have some guesses), but now I feel I know a lot about what I can do to prevent and/or control them.

I would recommend that you definitely press your doctor/neurologist for better communication, and find another doctor if necessary. I've also found that's it's useful to keep a record of what the doctors say and to ask them for a written summary.

Best,
Nakamova

 

[kmcc]

Hi Nix, As mentioned before you probably won't get any definitive answers.

All I suggest is keep on trucking......... and look after yourself. Don't stress out...... plenty of sleep etc.

To be honest even the most qualified medical people know as much as you and I.

Talk to several Doctors and Neurologists and I can bet they all say something different.

Slán.

 

[dfwtexas]

My neuro told me that 90% of seizures are unknown as to the orgin. Heredity factors are huge. My doctors suspect my seizures are either as a result of one of the multiple infections I had or the IV antiboditics that I was on for 2 years. However there is no test to determine the orgin. As frustrating as that sounds, the best answer is to deal with those factors that play a part in triggering the seizures and doing what you can to control those factors. Lack of sleep, stress are some of my biggies. I am also photosentive...but even at that it is certain lights....flashing images, strobe lights, flurocent, movie theaters are my light triggers.
We are certainly happy to give our thoughts and are here to give each other support.

 

[nixbrigade]

Wow, thank you all for your input. It really helps and even though i am scared and unsure of how to deal with this stuff- your posts are fascinating to me, truth be told.
I just had my MRI tonight and so I guess we will see if that turns up anything. I think that there might just be a future of unknowing. I had one seizure in December and one a week ago. I am on medication but I wonder if I don't have another seizure and if they don't find out what triggered the ones I've had, how long I would have to be on the medication? It doesn't really help that I don't get a good feeling with my connection to my neurologist... like he is put off with having to answer my questions and I know I have a lot of stupid questions but I don't have ANY experience with this stuff. I would think he might expect such inquires. Anyway...
I am learning a lot here and I appreciate your taking the time to share your experiences and thoughts.

 

[dfwtexas]

Seriously, you can not ask anything that we have either asked or thought about. That is what so great about this forum. You can come here and really open up and everyone will open up to you too.
As far as how long you would have to take the meds...there is no set answer for that. The more you learn about seizures, you will learn how is it very different from one person to the next. My father had two grande mals when he was about my age. He was on seizure meds for about 2 years when they weaned him off. Weaning off seizure meds needs close monitoring as it can trigger a seizure. He is 76 now and has never had any more seizures. I talked about this with my neuro. He said he would be very concerned about ever weaning me, said EEG showed seizure activity in 2 parts of my brain. He said the danger of triggering seizures in both parts of my brain at the same time would be very dangerous. Start a list of questions for your neuro...don't feel anything is stupid to ask...and put that question on your list.

 

[Meetz1064]

MRIs are

simply used to determine if there is a physical cause for the seizures--a scar, bruise, lesion or something along that line. If not, then the seizures are labeled as being idiopathic, or of unknown origin, and trust me, that is not all that uncommon.

Frankly, meds are a pain in the arse. (I've been on them for almost 44 years now). I'm sure that if you made some nutritional and behavioral changes, it would help immensely. And neurofeedback (see RobinN's signature for some great reading on it) would probably also be very beneficial.

There are a number of diets that can be used to quite often aid us in seizure control. The GARD (Gut Absorption Recovery Diet), the Ketogenic, LGIT and MAD (Modified Atkins Diet). You can find tons of information about them here on the site.

E journals are also very important. And there is plenty that you should put in them in order to help yourself, and your doctor to try and determine any patterns, and any possible triggers that there are that may be affecting your seizures. I have a list that you might like to see that would be helpful. If you'd like it, let me know, and I will post it for you.

DO keep in mind that you have the right to go doctor shopping. Remember: YOU PAY THEIR SALARIES, AND THEY ARE NOT GOD. Besides, if they are not willing to take your concerns into consideration, then they are not a good fit for you.

BTW, welcome to CWE. Hopefully you'll find plenty to like here. There's plenty of information here in the forum, especially in the Library and the Kitchen. And, if you ever need to vent, the Padded Room is there for you to do just that.

So feel free to kick up your feet and hang out. There are plenty of friend to be made, and things to learn. And don't worry, we'll be here for ya.

Take care,

Meetz
:rock::rock: