Weening off meds...?

[Big Sis]

OK this is long. Wasn't sure if it goes in the padded room or kitchen because I'm pissed but need info.
My sister was diagnosed with epilepsy 10 years ago after a grand mal. Since then she has been on countless AEDs with no success. The meds just give her a different type of seizure along with all kinds of scary side effects. She has been on lamictal for years now and was represcribed keppra in november of 08 (even though she has tried it with no success). A new doc weened her off keppra while adding zonegran. The zonegran has made her very weepy, depressed, has uncontrolled eye and facial movements, etc...) She is suffering from severe depression while still having many seizures (approx. 6 petit mals awake per month smetimes more and seizures in her sleep). So she has decided that she wants to ween herself off meds because she doesn't feel the benefits outweigh the side effects (she still has lots of seizures and the meds make her depressed). She is at the doctor today discussing this and this is their take on the situation- Ween off zonegran and up lamictal. She said she wants to know the safest way to ween herself off all meds and what else can she do to lessen the risks. The docs said absolutely no. She is going to do it no matter what so my question is at what rate does she lower her dosage? What else should she do to lessen the risks? She has gone into status before, most recently back in nov 08, she gets ativan for that. Is ativan enough to stop status? Her situation has gotten so scary that I can't see how it can get any worse (6 ER trips in the last 4 months). Any advise would be much appreciated.

 

[Meetz1064]

Ok, i

am going to say this, and please don't take it the wrong way. If your sister cannot stay controlled now, she has no business going off meds until she is. Or until she's on a diet of some sort that will help her control her seizures, such as the GARD or LGIT diet.

Now, that said, Ativan CAN and WILL stop status ep events. BUT, the brain teaches itself to KINDLE, or to seize, again and again. If there is not something there to raise the seizure threshold, then STATUS WILL OCCUR AGAIN AND POSSIBLY AGAIN. STATUS IS A LIFE THREATENING EVENT, NOT TO BE TAKEN LIGHTLY.

Add to that, if a drug is used repeatedly for events such as that, your sister can possibly build up a tolerance to that particular drug, thereby making its usefulness far less, or possibly not usable at all.

6 ER trips in the last 4 months is quite a few....she really needs to get under control. Perhaps her neuro can find a clinical trial that she can participate in that might be of some help to her for a new med, or something, if he's any good...

 

[RobinN]

My daughters seizures were at the most 6 tonic clonic in a month... ON meds. More were going to be tried, and then I found nutritional support. She is now down to less than one a month. Some might find that not controlled. I find it 100% better than ON meds.

The depression was horrific. TERRIBLE... suicidal thoughts, self hatred, awful

Now there is LIFE and a future, and spirit where there wasn't any.
I know when I brought Rebecca off of meds, I did it slower than what even the doctors recommended. I had nutritional support going prior to tapering off though. I had vitamins and minerals to support both brain and body health. It isn't cheap. It is a new lifestyle, and it must be adhered to. You need to find her a doctor that is willing to support her. Do research and have that info to discuss with them.

She is lucky to have you. Fight for her right to be healthy!!!

 

[Big Sis]

Thank you for you responses. I love you Robin and I don't even know you! I think you understand my sisters need to stop the meds. 10 years without success-it's time to stop the insanity. She isn't willing to try anymore at this point and how many years have to go by before you say enough is enough. We really feel the drugs are doing more harm than good. Any suggestions on finding a doc that is willing to work with patients looking for a different approach? We are in northern cali but my folks are in southern cali so she can see docs here or there. What type of doc do you work with?

 

[RobinN]

I know it sounds funny but look for a DAN doctor. I realize that your sister does not have Autism but these doctors know so much about body-brain health.

My daughter is with Doctor Kalayjian at USC Neurology. There is also a doctor I really want Rebecca to see. Her name is Dr Karina Hirani. http://www.drhirani.com/
She has a whole body awareness of illness, and has recently also added Neurofeedback to her practice. Problem is she doesn't take our insurance and that won't work for us.
I will keep my eyes and ears open for doctors that are recommended in NoCA.

You don't mention how old your sister is. I know the seizures began 10 yrs ago, but did they begin with hormonal changes?

Sorry, I do not buy into the idea that meds are the only way in every situation.
I love you too Big Sis, for taking on this huge role. I know, because I have been managing my daughters situation for the past 2.5 yrs pretty much on my own. The doctors have shown me the wrong path many times.

Where in NoCA do you live? We use to live on the North end of Sausalito and then in Lucas Valley. Rebecca and I go up there once a year because she skates at Skate Bowl in the Moscone Center. I love S.F. !

 

[1096]

i recommend epilim

u never know ~

and boy do i still admire you robin!

 

[Bernard]

http://www.coping-with-epilepsy.com/forums/tags/wean+off+drugs.html

 

[Cint]

BigSis,

I agree with Meetz. Your sister needs to be very careful if she intends to go off medications. Is your sis seeing just a regular neurologist or an epileptologist?
And as Robin has asked, could the seizures be hormonal? For women, hormonal changes make a HUGE difference in seizures. Could they be catamenial seizures?

Cindy

 

[Big Sis]

We live in beautiful Humboldt County (the land of ancient redwoods but very few medical specialists). My sis just turned 28. She began with a neurologist, then began working with an epileptologist down in L.A. and now she is back with a neurologist because there are no epileptologist in our area. She has worked with approximately 5 neuros, 1 epileptologist, an accupuncturist and dozens of meds in the past 11 years now.

I'm not sure if her cycle coincides with seizure activity. She is working on journaling regularly so she can begin to make any connections with cycle, stress, diet, etc...Lots of stuff to thinks about. Need to stay positive and have faith. Send lots of good vibes and prayers this way fellow copers!

 

[skillefer]

Hi Big sis! Welcome to CWE. I'm in So Cal. I have to agree with Meetz. While your sister is not controlled, is not the best time to start weening off meds. I'm not a 'meds are perfect' person. I believe in looking at the entire person, and I realize that meds onlly work for about 60-70% of the people who try them...but I think that your sis should wait to ween until she has a bit more info....The journal she's keeping is a good idea...here's what I normally tell people to jot down:

1. Food and drink (What she eats, when, how much.)
2. Sleep (how many hours every night, and whether it's uninterrupted or not)
3. Stress (physical (like colds, flu, illness), mental, emotional, spiritual, and what she does to deal with it)
4. Odd feelings (migraines, deja vu, odd smells/tastes/feelings/odors, etc...)
5. Seizures (when, what exactly happened, how long did it last, what was she doing prior?)
6. OTC/herbal supplements (what she takes, when, and how much)
7. her periods (The first day of each one...and how long her cycle is.)


The reason I suggest jotting down food and drink: To weed out other conditions that can trigger seizures such as hypoglycemia (low blood sugar) and food allergies or sensitivities.

Lack of sleep is also a common trigger.

And not dealing with stress in a healthy way can also trigger seizures.

So here's what I usually advise:

1. Get at least 7 hours of sleep every night uninterrupted. No ifs, ands, or buts...

2. Cut out ALL caffiene...(soadas, energy drinks, coffee, tea, mate, etc...and chocolate if necessary)

3. find healthy ways to deal with stress (yoga, meditation, prayer, art, journaling, writing, cooking, exercise, etc....)

4. Make sure she eats 6 small meals a day ( by small, I mean it should fit on a dessert plate...and every time she eats a carb (bread, rice, anything with flour, or potatoes ) she should have a protein.) This is to make sure that she isn't hypoglyemic. If there's anyone in your family that has diabetes, there's a strong chance that she may have hypoglycemia or sugar sensitivity. So she should switch to organic whole grain if at all possible....

5. When she exercises, make sure that she does NOT hyperventilate. For some people, deep gasping breaths like you take when swimming for exteneded periods of time can trigger the seizures...

6. try to switch to organic, people friendly cleaning supplies....nothing with ammonia or harsh chemicals. (Yes, these can trigger seizures too...)

7. Avoid OTC meds if at all possible (especially cold medicines...as the antihistamines have been known to work against the meds...)

8. Check to see if her current meds require her to avoid any particular meds or foods...Certain meds require you to stay away from things like grapefruit, or the meds are metabolized too quickly and leave your system to quickly. Other meds (like birth control) can screw up absorption too..or can be less effective due to the seizure meds.

9. If she notices that her seizures happen around specific things like flickering lights, or when she's looked at a repeating pattern (like chess boards) avoid those things...and yes, flickering lights and patterns can trigger seizures...if it does for her, then she might want to consider blue polarized lenses...just make sure that the lenses themselves are actually made of blue glass and don't have just a tinted coating....the blue lenses have been known to cut photosensitive seizures by 50%.

10. Avoid all alcohol and recreational drug use. Pot and alcohol have both been known to trigger seizures.

Yes, there is a mind body connection...so she needs to make sure that she has all of these habits in place and does not stray from them. If she can get her seizures under more control by doing these things, and keep those habits for a good 40 days without straying from them, then she might have a better chance of getting her body ready to ween off the meds. If she doesn't gain any more control, then I'd strongly advise her not to ween...at least not yet. she might want to consider vitamin supplementation too...but before she does that, she needs to get bloodwork done to see what her blood levels are first.

Didn't realize I wrote so much...anyway, I hope this helped. The thing for your sister to remember is that if she weens off the meds, she has to understand that her seizures may go up. And that this can cause what is called kindling...where the brain trains it self to seize as a response to stimuli. She may want to consider adopting EEG Neurofeedback to try to avoid the kindling. But like all other treatment options, it is NOT 100% unless you make use of it almost religiously...she can't just take a break or a holiday from her healthier eating habits or lifestyle changes or she will have seizures, and possibly even stronger ones..

 

[Meetz1064]

Mind you,

I don't want to come across as the "Meds are the perfect answer" type of person. I just want your sister to understand that there is some real danger involved with weaning herself off the way she's talking about when she has no real control, and no type of real support behind her either.

Trust me, I use both meds, and diet. If I felt I could get off meds entirely, I would, but recent circumstances don't make me feel that way.........YET. That will probably change, with some hard work on my part (and thanks to Robin's encouragement )

I will tell you this, just to illustrate my point. While it is true, it is very sad.

I HAVE gone off meds before, without support. And was off them for about 3 months. It was a DISASTER. I had a severe, bone-breaking, bruising horrifically damaging TONIC CLONIC ONCE A WEEK EVERY WEEK FOR THOSE 3 MONTHS.

It honestly took YEARS for me to gain back full use of everything, while parts of me are still permanently injured--there are parts of my memory that are honestly and truly destroyed from that little journey. All I can say is thank heavens for my best friend Katie.

I will NEVER put my friends and family through that again.......not without having SUPPORT. Not without knowing EXACTLY what I'm doing. Your sister really needs to know a lot more than what she does right now....