Howdy

[The Dude]

Well where to start I guess the beginning 31 years ago and 100's of thousands of nasty pills with various side effects nasty dietary supplements sound familiar? I bet it does for some. The latest cocktail left me wanting to go off the pills and return to a life of grand mal seizures. That's what made me turn to the web to see if others were in similar situations. I'm sure there are. The pills may have been helping to keep the seizures in check a little bit more than before but at what cost. I was only having 3 or 4 a year when I was only taking Lamictal the side effects were minimal and tolerable.

Is there anyone else out there that would rather have a few seizures a year than have to deal with the various side effects by these AED's which ever ones you may be on? Am I alone in this feeling? Am I feeling too complacent?

I'm starting to accept after 31 years of living with epilepsy that I will have seizures and there is no magic pill no matter what the Dr's and the drug company's want to think. Well that's the tip of the ice burg.

 

[ladyrayven]

Hello,
Glad you are here,I am new also...I do not have grand mal seizures,but my brother does.it is difficult to watch him suffer and see the side effects he endures.I would really like to eliminate the side effects as they are at times very unbearable.

 

[The Dude]

Thanks for the reply Lady Rayven. I can't imagine what it's like to be on the outside looking in. Watching someone you love going through the difficulties that the meds we take bring. It's one thing to deal with the epilepsy but the drugs can change a persons personality into a whole different person. Everyone is different though and the meds effect each person in different ways. I've perplexed the Dr's I've seen over the past 31 years responding to different meds in ways that not only the Docs but the drug companies have never seen. I'm literally a case study of my primary neurologist's career, I've been seeing him basically since he has been practicing medicine (too bad he's reaching retirement age). Notice I said primary, I see 2 different specialists. I hope I don't come across as a negative nelly but is there really a way to eliminate the side effects of the meds or is it just a matter of compromise, "how much BS are you willing to put up with lol". That's about where I'm at

 

[ladyrayven]

i think that there are ways through diet,as i was reading here earlier in "The Kitchen"..yes watching on the outside for him and the inside for me..after 14 years i have been diagnosed with focal/generalized seizures which are not controlled

It's one thing to deal with the epilepsy but the drugs can change a persons personality into a whole different person. Everyone is different though and the meds effect each person in different ways.

..yes i do agree with this statement...smiles...curious as to the way you have perplexed the DR's.

At the moment I will be starting new meds. and honestly hope the side effects are not too bad

 

[Nakamova]

Howdy The Dude, welcome to CWE!

I hope you abide with us awhile...

Is there anyone else out there that would rather have a few seizures a year than have to deal with the various side effects by these anti-epileptic drug's which ever ones you may be on? Am I alone in this feeling? Am I feeling too complacent?

I've gone off meds a few times in the hopes that I would only have a few seizures per year -- but each time the seizures began to happen more frequently, so at the moment I remain medicated. I'm ever-hopeful though, and currently considering neurofeedback as a possible step to trying to be go off meds once again.

Best,
Nakamova

 

[huskymom]

Welcome :hello:

There is nothing here that someone hasn't experienced with you. Come often and hang out. Your going to love it here.

I have decided that I am willing to put up with a couple of seizures a month and stay on the med's I have. I am not having any bad side effects with them. My dr. told me that mine are intractable (won't be treated by medications) and that we are managing them. I am cool with that. I like being at this spot because I know I am doing what I can. I can relax and just enjoy me

 

[The Dude]

i think that there are ways through diet,as i was reading here earlier in "The Kitchen"..yes watching on the outside for him and the inside for me..after 14 years i have been diagnosed with focal/generalized seizures which are not controlled..yes i do agree with this statement...smiles...curious as to the way you have perplexed the DR's.

At the moment I will be starting new meds. and honestly hope the side effects are not too bad

My primary nero I've been seeing for 31 years has been on a mission to "Fix" me. For several years in the beginning I was in his office every other week. On new meds every other month. In and out of the hospital. They were unable to get things under control. Then one day they just stopped ? ? ? Why? What was different ? Environment diet meds nothing had changed. The seizures had subsided. At this point I was on Celontin. I am 1 out of 5 patients that my Doc has used Celontin on in his career. WTF happened everyone was wondering. At this point I was about 9 or 10 years old. Other reasons the Docs were perplexed over the years I have responded to different AED's over the years experiencing what can only be called (off label side effects, most recently {chronic eye pain extreme light sensitivity, I have been a total shut in with all the blinds drawn lights off and at times wearing TWO pairs of sunglasses} that comes and goes summer has not been much fun) with relation to Topamax. Yet another million dollar question is, my epilepsy is genetic. Everyone else in my family that has epilepsy has localized they have all been successfully treated with the surgery I have generalized ? I have started seeing a second specialist about 2 years ago and it's almost as if I'm more of a project than a person. It's like he views me as a jigsaw puzzle and he's trying to find the missing pieces. I'm tired of trying to get fixed I really don't feel broken.

I'll look through the Kitchen and see what they say about diet but if you are referring to the keogenic diet been there done that and I still don't eat apple sauce till this day (that's how my parents administered the oil they hid it in the sauce).

I've never heard of nerofeedback I'll have to research that one.


And yes Nakamova

The Dude most definitely abides

 

[NeuroNotes]

*waves to The Dude*

 

[Sparklebutt]

Welcome I am rather new here too and there have been so many wonderful people with great answers and good support.
I totally understand being a project with Dr.s I have seen more specialists because my original Neuro wanted others to see what was going on with me and why meds were reacting the way they did with me. I went off my meds in Dec because I found out I was pregnant when I had my baby I had more seizures than I would like to admit so I had to go back on meds and trust me I am not happy about that at all.
I don't think I can give any advise about the dr. issue but just to let you know you are not the only one who feels that way and also that it is not abnormal to want to be off meds completely.

 

[The Dude]

career guinea pig

Wow how time flys I look up at the date on my last post and I can't believe it's been almost a year, it doesn't seem that long ago. The new drug cocktail includes 600mg's Zonisamide at night 2500mg's of Keppra 2x day and 400mg's of Lamictal 2x day and throw in a vicodin periodically for head and eye pain. I wish I had better things to report however on October 8th I will be 6 months seizure free and will be eligible under state law to get my DL back even though it would be irresponsible of me to be out on the road IMO.

The Topamax is gone and done with the Lamictal dosage is down Zonisamide is the new drug of the day.

Vimpat is another that was discussed as an alternative but as I understand it at this point it would be "off label use" for my type of seizures. Has anyone been involved with either of these drugs Zonisamide or Vimpat ?

 

[The Dude]

I put my head through a wall today literally I can sit here and say it was the Keppra Rage in conjunction with Lamictal and Zomithiside, but in reality I was unable to keep my emotions in check. Now I have a hell of a headache a hole in the wall to patch and paint and have made a whole big mess of my familial relations. I am surprised I am not in a motel right now rather than my own home. My Nero specialist has been able to squeeze me in on Tuesday. He moved up my appointment by 6 weeks. I went in today and had my blood levels checked so he could have results when I arrive. I didn't speak with him on the phone I've been quite the hermit but the wife said he sounds really excited about getting me into this Vimpat study and in turn lowering my Keppra. This we will talk more about on Tuesday but I've read a bit more on Vimpat and it really doesn't sound much better than most AED's out there (a lot of the same uses precautions and side effects) except that it's stock is way up over the last 12 months (hmm???). I know it's a new drug but damn it's through the roof.

The business oriented side of my brain has to wonder. Is this a you scratch my back I scratch your back ? Do the Dr's that prescribe and recommend our scrips get incentives ? Is it OK to ask these questions or is it flat out rude ? Does anyone know what kind of legal or ethical limitations are put on our healthcare providers ? Is it ok for them to own stock in the drug companies ? It would almost seem a conflict of interest for a prescribing doc to also own stock in a parent company ya know ?

 

[Nakamova]

Zonisamide made me angry, but I think it was because it made it hard for me to eat. Low blood sugar = Cranky Nakamova.

I think it's normal for neurologists to be excited about the next "new" med. They are probably more optimistic than we are because they haven't ridden the med merry-go-round, or had to deal with all the side effects. That doesn't rule out the possibility that your doc may have other motives -- honorable or dishonorable -- for leading you towards Vimpat. He could have a colleague who's had good experiences with it, or he may have been seduced by a drug salesman's spiel...

 

[The Dude]

Thanks Nakamova and everyone else,

I met with the Doc a couple days ago and have had some time to

process and research things a little bit more.

I have decided not to do the Vimpat study

I'm going to try something else