Neuro wants me to change meds

[LuvMyTwins]

So, as most of you know, epilepsy and I used to reside together without much hoopla. Due to a doctor who failed to read his med book on E. life went haywire and, for a while, was unrelenting.

I look on the web and find this site to learn about vitamins, neurofeedback, etc. Began both and feel great. My one sore spot is that instead of being on monotherapy, I'm on two (plus an Ativan at night).

Today, I met with Dr. Orrin Devinsky in New York. Yes, the same one on epilepsy.com. Firstly, big hugs to Robin for all of her advice on neurofeedback and vitamins. I only had to add some extra vitamin c---they were impressed with my routine!!! Neurofeedback is also something they highly recommend and were happy to see that I go 2x per week.

Where they weren't happy is with my meds. They want me on monotherapy as soon as possible (and eventually less than that). Unfortunately, to do that, they want me to go into the hospital for 4 days to come off both Tegretol XR and Lamictal as well as 50% Ativan. To replace this, they want to add Depakote. Dr. Devinsky's opinion is that my type of seizures (plus my EEG pattern) is supposedly best with Depakote.

Now, being that I have very strong beliefs of both vitamin therapy and the GARD (no soy or dairy for me either) diet as well as neurofeedback, it shouldn't matter what drug I'm on. Yet, I'm nervous and a bit hesitant.

Alright fellow E. friends, I need your opinions. My head is telling me that going back to mono is best for the body AND my new eating, etc lifestyle will help in the transition. Yet, my heart remembers the lovely doctor who thought Keppra would be great !

Thanks for any and all advice---LMT:e:

 

[LivingFruity]

Wow! I'm impressed by the steps you are taking. I don't have any advice to give in regards to medication, but I did want to pop in and say CONGRATS!!! :clap:

 

[RobinN]

This is really awesome news. I am quite impressed as well.

I would want you on monotherapy too.... if I were a doctor :bigsmile:
Let them put you in the hospital. Good place to make such changes.

On monotherapy you will be able to see the positive results from your nutritional changes and the neurofeedback therapy. Then hopefully they will be able to wean you down to .... clear water :clap:

 

[epileric]

I used to be on multiple meds

I was on Mysoline, Tegretol, & Depakene. I was taken off of the Mysoline & Depakine & felt a definite lack of side-effects. Hopefully you'll feel the same thing when they wean you off the Lamictal & Tegretol.

 

[Zoe]

Where they weren't happy is with my meds. They want me on monotherapy as soon as possible (and eventually less than that). Unfortunately, to do that, they want me to go into the hospital for 4 days to come off both Tegretol XR and Lamictal as well as 50% Ativan. To replace this, they want to add Depakote. Dr. Devinsky's opinion is that my type of seizures (plus my EEG pattern) is supposedly best with Depakote.

Now, being that I have very strong beliefs of both vitamin therapy and the GARD (no soy or dairy for me either) diet as well as neurofeedback, it shouldn't matter what drug I'm on. Yet, I'm nervous and a bit hesitant.

Alright fellow E. friends, I need your opinions. My head is telling me that going back to mono is best for the body AND my new eating, etc lifestyle will help in the transition. Yet, my heart remembers the lovely doctor who thought Keppra would be great !

Thanks for any and all advice---LMT:e:

Hi Luv,
Good news about going on monotherapy! Depakote can have some serious side effects and there may be ways to prevent or lessen them. You can go to your pharmacist and ask for detailed and very in-depth information on side effects of depakote, INCLUDING vitamin depletions and interactions. Then you can ask the pharmacist, and Dr.Devinsky what will help reduce or prevent those side effects. It may be there are some supplements you can take with it, or maybe some kind of exercise or other activity that can improve the way you metabolize it.
Two other notes here. In his earlier book, "A Guide to Understanding and Living With Epilepsy," Devinsky writes about when it is safe and advisable to get off of AEDs, and how to go about it. Sounds like he will assist you in this when the time comes. Best wishes for you on this!:mrt:
BTW, I think Devinsky will be familiar with one of the studies done in New York for yoga and epilepsy. That may be another option for you to ask him about.
http://www.epilepsy.com/articles/ar_1066714949

 

[joan]

I just moved to Dr. Eric Geller who works with Dr. Orrin Devinsky but I see them in NJ. I am very optimistic with them as well. I just spent the better part of the week with one of their Drs. I really liked him and he really made my daughter feel comfortable and involved. I am impressed with thier practice and am very hopeful. They seem to see the whole body and not just the E. We shall see.

Good luck

joan*

 

[brain]

That is great news to hear! Keep us posted with
the updates and progress!

 

[skillefer]

cool Beans LMT!!! Monotherapy is definitely best when it can be done. (and less expensive. ) Honestly, if I were you, I'd do as the doc says. I'd go ahead and schedule the four days in the hospital, and let them take me off the old meds and onto the new. Trust me, its going to be easier then trying to wean off of one med at a time while adding a new one. Just think...four days and then you're done! None of this taking weeks at a time..or even months. And it sounds like your doc is really pleased with what you've done to get med free. which is awesome. Who knows, he may just want you on the depakote for maybe a year or two while you get all the other parts of your med free routine lined up and consistant. That way, he can take you off of just one med, and then your done! How exciting is that! Zoe does bring up a good point, that Depakote can have some bad side effects. But honestly, which meds don't?? And remember, everybody is different. The only issue I had while on depakote (and I took it over 20 year) was weight gain. With the lifestyle changes you already have in place, that probably won't be a huge issue. Prolonged use can be hard on the liver, so your doc will order bloodwork on a regular basis. My liver functions were always fine...so as I said, everyone is different.

 

[Bernard]

... Now, being that I have very strong beliefs of both vitamin therapy and the GARD (no soy or dairy for me either) diet as well as neurofeedback, it shouldn't matter what drug I'm on.

It takes a while before you realize the full benefits of neurofeedback. Diet alone may not be enough to control seizures.

AEDs are powerful and it does matter a whole lot which one(s) you are taking. They impact your body's natural functioning.

I think it's great that Dr. Devinsky is supportive of what you are doing and willing to oversee you getting on a monotherapy. Go for it!

 

[LuvMyTwins]

Thanks Friends.....

Thank you for all of your wonderful support and insight:woot: As all of you know the journey with E. can be rather bumpy, especially when we're talking about a medicine change. Yet, as we move on and become AWARE of ourselves (I still believe seizures are a symptom NOT a disease) we become healthier.

I'm still mulling it over (I need to decide tonight), but will keep you posted.

(((HUGS))) to all!---LMT:e:

 

[seizures4ever]

First off, Yay!! to you for taking charge of your healthcare! I'm so glad you are in to see a good doctor and are seeing positive results w/your health changes.
I agree with everyone, but I wanted to add my two cents.

You said he is placing you on Depakote for your particular seizure type. I just wanted to support that statement and say that several of my neurologists have said that previous doctors had me on the wrong anticonvulsant for my type(s) of seizures. Each medication is designed to better control certain seizures. I would say to give his idea a chance. Especially if he is going to be monitoring you while he is transitioning the drugs.

Just my thoughts. Good luck with it all! -Julie

 

[LuvMyTwins]

You'll Never Guess What I Did...Thoughts?!?

Hi All--
About a week ago I told you of my appointment with Dr. Devinsky and how he wanted to do another VEEG to change my medicine to Depakote. So, I set up an appointment for yesterday and was ready to go.
As you all know I've been working real hard on my health as a whole (vitamin therapy, yoga, neurofeedback, prayer/meditation, raw food diet). So, the day you go to NYU you need to begin admission on the phone. THEY HAD NO BEDS! I worked myself up (as well as my hubby and the twins) for NO BEDS! Yet, it got me thinking.....
My goal is to get off most/all of my meds and use complementary methods. Why do I want to start an entirely new med as opposed to go off what I have?!? Further, how was this decision made in 5 MINUTES. Literally, when I thought about it the decision was made by the doctor in 5 minutes.
So, after being stable and happy again for over a month now, why do I want to start again? Answer: I really didn't. I cancelled my name off of the waiting list and left.
Did I do the right thing? For me, I say yes. I think that sometimes we just listen to the doctors and don't go with instinct. Dr. Devinsky is one of the best in his field, but in 5 minutes he wants everything to change? I don't think that was correct.

So, as I'm all empowered over here...thoughts??---LMT

 

[brain]

I would inform the Doctor's Office and let them
know that there were no beds available pertaining
to his request for a video EEG ... and see if there's
an alternative mode that he would recommend?

And let them know you had to cancel.

 

[epileric]

Imo

I honestly think I would want to know how the doc was able to make such a quick decision. They do know more about western medicine than I do. I think if I still wasn't comfortable after asking with how he reached his conclusion I'd go with my gut instinct. I believe that Even if his decision would have been helpful, if your gut instinct contradicts it then that would take away from the possible benefits.

It is your body that is effected by the treatment therefore it should be you who is comfortable with it. My only advice would be to ask questions first then decide if you are still uncomfortable.

Remember I'm not a doctor but this is what I perceive to be the best course of action.

 

[seizures4ever]

:agree: with Eric

I think that's a very personal decision. You deserve time to think about it! Tell your doctor what happened, and why it was important to you for your name to be taken off the "waiting" list. This way you can both be on the "same page" when you go to his office for follow-up.

Actually, I did something similar one time. I was scheduled for an MRI, but I waited for hours and was never taken back. The techs. finally came to get me from the waiting room and told me that I had to go into the MRI head-first with the cage-thingy over my face.

UMMM. Heck no! I'm claustrophobic, and I had already told my doctor this. Well, they sent in another Neurologist to "counsel" me about it. He said that in my doctor's orders she requested this type of MRI because she was considering me for surgery! She hadn't even discussed surgery with me! (As it turns out, I'm not a candidate anyway...but that's not the point).

I got off of the table, told the techs to go get the next patient, and I left!

There is nothing wrong with self-empowerment! Speak up and be proactive.
Good for you!

-Julie

 

[brain]

I also second to Eric's post as well ...

The cancellation plus Eric's post would give you
more options to reconsider and mull over!

 

[LuvMyTwins]

Well....

It was actually the neuros. office that told me about no beds. Dr. Devinsky called afterward to let me know that he was sure that he could fit me in sometime within the weekend/next week. Unfortunately, I have twins and can't be that flexible with my schedule. It took a lot of work to schedule school vacation with Mommy in the hospital.

In terms of the medicine.....even though I had always been stable with Tegretol (and a little...very little...Lamictal added after the doctor mistake) he just felt that Depakote was better. There was really no huge argument as to why it would be good to change my meds with the exception that he felt that it was a better med. Yet, what is better than stability?

I will call on Monday to discuss further. Yet, he also said the Lamictal was just as good...if the goal is one med (which it is for me) why not just go to Lamictal which I'm already on. Unfortunately, I get the same answer...it's better. I don't know if I'm willing to go through sickness and maybe seizures for this argument.---LMT

 

[joan]

Im not sure Dr Devinsky only does the video EEGs in NYU. He may also do them in St Barnabus in Livingston, NJ. I was in st barnabas Jan 23 - 27 for my daughter and Feb 4 - 7th for my son.

I just went thru this with dr geller. The reason we switched my kids meds were they werent working as well as we thought. I also think, as an adult, you know better what works for you. I can understand not wanting to change meds If its not broken? why fix it.

I wish you well
joan*

 

[epileric]

Unfortunately, I get the same answer...it's better. I don't know if I'm willing to go through sickness and maybe seizures for this argument.---LMT

He sounds like an old neurologist of mine whose favourite answer was "because I'm the doctor & you're the patient".

Could you explain that you're uncomfortable with (or won't go along with) any treatment that you don't understand and to explain from a medical perspective how one medication functions differently that would make it better?

I have agreed to go along with things that I didn't agree with to avoid an argument & have had very bad results. Understand though that asking to understand how something will effect you is your right & should have to lead to an argument.

 

[RobinN]

It is all crazy making. Where is the guarantee that this med is "better"? Sometime is sounds like they are selling candy.

I say (and I am not a doctor)... stay the course. Heal, get well, train the brain to learn how to balance itself, and get to a point where you can lower the existing meds.

As if that is harmful in any way.