Going off meds

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xenome

xenome

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My medication doesnt work. I had a few more seizures over the weekend and
Im fed up with forking out all this money on something that doesnt seem to help. Im thinking about going off my meds and looking at other treatments.

Anyone know any good reasons why I shouldnt stop taking my meds?
 
Yea, you could die! If you adjust your meds on your own or don't follow directions, you are asking for trouble. If you don't agree with your doc, check with another!
 
A long time ago I went off my meds because they really weren't helping. That was when I had my first T/C & was very lucky since I was helping renovate & house & was holding up the ceiling when it hit.

It can feel like your meds aren't doing anything but it can always get worse without them. I can't say I like taking my meds but I've learned that even with at least 1 sz a day (like I've been having for over a month) I'm still better off taking them.

Also stopping them suddenly can provoke seizures worse than normal.
 
xenome said:
My medication doesnt work. I had a few more seizures over the weekend and
Im fed up with forking out all this money on something that doesnt seem to help. Im thinking about going off my meds and looking at other treatments.

Anyone know any good reasons why I shouldnt stop taking my meds?
Click to expand...
Think about your family & friends . What would happen if you stopped your meds besides more siezures -- You might end up in the hospital thats what . Get another Neroligists Opinion BUT make sure he or she is a certified siezure specialist first before going to see that person . Cause if you see just a Neroligist that isn't a specialist they won't be able to help you balance your siezures & calm them down more . DAVE
 
Oh no, do NOT take yourself off the meds. Talk to your dr and see what he can advise you.
The other users are correct...you can be putting yourself at risk of worst seizures or death. My dr warned me that not taking my Keppra could very well kill me...it's so serious, please take it seriously.
 
I would tell your doctor that you want to do this, and get help in doing so.
I would not allow anyone to tell me that I would die without a med. I believe that the meds are what is causing the seizures during the reduction phase. You become use to the pharmaceutical in your system, and of course you should expect some residual effects if you reduce that out of your system. The body is having a reaction. It took about a month for Rebecca's body to rid itself of all chemicals. It is MY OPINION that this is the true pharmaceutical myth... that we can't realize health without a pharmaceutical in our system. Too many are looking for "The" wonder drug.

Especially, if you are not being helped by this med, you need to find alternatives. You are causing more problems by being on a med that isn't helping you. In fact, they might be increasing seizure activity. Of course who would tell you that. Also, what conventional doctor is going to tell you to go off of all meds. This is all they know to give you. They could be charged with malpractice if they did not offer you this treatment.

There are alternatives if you are willing to pursue them.

This is my opinion.
 
Take two of these and call me in the morning...I hate that treatment method.

That being said, please talk to your doc before you go off your meds. I believe there are alternative treatments that can be as effective (possibly more so), but suddenly stopping your meds could be harmful because your body would go through a type of withdrawl and you would likely be even more prone to seizure activity. Best of luck!
 
In the winter of last year, I ran out of the Depakote ER that I take so I was only taking Keppra. I had several seizures. Then I ran out of Keppra right as I was getting some more Dekapote and had a few seizures in the following days until I got some more Keppra. This came after I went 2 months without any seizures. I told my neuro that my meds (especially the Keppra) are not working. I have seizures whether Im on them or not. I asked to be taken off Keppra.
She said that they are working because I went 2 months without one then had seizures when I stopped taking them so I should take them still.
I asked her about neurofeedback, she said she doesnt know what that is.
Since then Ive had dozens of seizures while taking my meds and Im sick of it.
Everytime I see her she changes the settings of the VNS in my chest because I tell her about all the seizure activity I have. Its just so frustrating!
 
xenome said:
Its just so frustrating!
Click to expand...

That I will definitely agree with.
If your doctor doesn't know about an alternative therapy... is she willing to learn? Is she open to you giving her information on the subject?

I could send you the information I have from EEG Institute on neurofeedback, if you would like, and if you think your doctor would look at it.
 
I have found a few neurofeedback providers in my area. Thats what I want to try. Robin, you have said that your daughter has been having success with this, right?
Probably is, Im almost out of meds and if I refill them, Im going to have to pay nearly all the money I have on them. Thats why I was thinking about not refilling them.
As far as educating my neuro, I doubt she would want to listen. My meds dont work, she tells me they do. I think any education on alternative treatment would be met with hostility, because she is the doctor.
 
My daughter has been having wonderful success with NFB.
I do hope that you have enough meds to come off very very slowly. However, if you are doing NFB at the same time, that practitioner can also help with stability during this phase. You must be very respectful that these drugs are powerful. Even if you can bargain for a few extra samples I would not cut down quickly. Perhaps you can find another doctor that would help you with this. I understand $$ issues.

In addition, I also would highly suggest you read:
Epilepsy: A New Approach
There are some great suggestions on how you can be proactive in the changes that you want to see happen.

My suggestions to anyone going through this, with our without a doctors permission, would be to supplement with:
Taurine
Omega 3
Magnesium

That is what I would do for my daughter, so it is solely my opinion based on MY research.
 
Whatever you do, you need to make sure your doctor knows about it. Definately don't stop your meds with her. Your doc does need to listen to you more though it sounds like. Remember, she works for you.
 
xenome said:
How expensive is it to do neurofeedback?
Click to expand...

I am sure that this differs with each practitioner.
EEG Institute is $150 a session. The first is more because an evaluation, and history is taken. I received a price break for paying for 20 sessions in advance, and then another 10% off because we are members of CWE. The first check I made out was just under $3000.00.

Now we are renting the equipment for a monthly fee of $300. It cost about $300 for me to be trained.

It is not an inexpensive therapy by any means, but either is work on our automobiles. I find this to be far more rewarding than paying the mechanic.
I hope that you find the same positive results as we have.

Your practitioners might offer a free consultation before you begin. It helped me to know who I would be working with. Now I know we had one of the best in the business.
 
RobinN said:
I do hope that you have enough meds to come off very very slowly. However, if you are doing NFB at the same time, that practitioner can also help with stability during this phase. You must be very respectful that these drugs are powerful. Even if you can bargain for a few extra samples I would not cut down quickly. Perhaps you can find another doctor that would help you with this. I understand $$ issues.

In addition, I also would highly suggest you read:
Epilepsy: A New Approach
There are some great suggestions on how you can be proactive in the changes that you want to see happen.
Click to expand...

:twocents:I agree with Robin on this. It is very important to taper off the meds, so that you don't go into withdrawl. I completely understand the money issue as well. I would suggest talking to your pharmacy and asking if you can fill only part of your prescription (like a week's worth or so)...it would give you enough to back down slowly and not cost so much. I had to do that at one point.

The book Robin suggested is also a great idea. It has been very helpful to me. I'm in the middle of it right now, but have already learned a lot and have decided to search for a doc that is open to neurofeedback.
 
My neuro just took me off of mysoline. I was on 2 pills a day & he had me go down 1/2 a pill every month. It took a long time (4 months) & even then it effected my seizures so I'd recommend taking more time to taper off your meds than 2 weeks.

Doing it that way you also might find a dosage that works for you (I've found sometimes lower doses can help more than larger one) but gives you a minimum of side-effects.

:twocents:
 
this is coming from someone who is very hard headed. find a doctor that will listen to you. the first thing they should say is, "what is going on, and what can i do to help." when all they do is shake their head and tell you to do as they say, it's not what you need, they are there for you. i stopped seeing doctors for a very long time because of that attitude. it is my body and my brain though and if i can't control the doctors i eliminate them. i have found a good doctor (i'm hoping) in the first two visits all he said was, "what is wrong?", then he asked "how can i help?" he wants to help eliminate what medication he can and he is interested in trying anything possible to try to stop the seizures all together. i hope you find a good doctor that will HELP YOU and not just TREAT YOU. good luck, and please let us know how it goes...:hello::hello:
 
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