Where can I find info about being taken off medication cold turkey?

[momof3boys]

Im trying to find information telling about what can happen if youre taken off seizure medications "Cold Turkey". A couple months ago I came across a site that said if youre taken off seizure medications abruptly, it can cause you to have a different seizure than what youre use to having.

Ive searched high and low, & cant find where it was that said that!

I just want to find some information so next time I go to my dr (which wont be til august), and then on June 13th when I revisit the psych dr, to show them this information. I truley believe that what I had during my VEEG in March, was a result of being taken off all my medications cold turkey. No weaning me off, just flat out stopping it all. At the time I was on Keppra XR, which now Ive found information that says can take longer to get out of your body, rather than the regular Keppra. So it explains alot as to why it took 40 hours after my last medication dose before any seizures started.

 

[valeriedl]

I know most meds you should not quit cold turkey. Most you have to be weaned off of, not just epilepsy meds. Just stopping them abrutly can cause lots of problems.

I was recently in the hospital and they gave me my meds 4 maybe 5 hours late and I ended up having 3 seizures that night because of it. So I know, even if I wanted to, I would not beable to stop cold turkey.

Is it your drs that want to stop you from taking the meds or is it you?

 

[momof3boys]

I know most meds you should not quit cold turkey. Most you have to be weaned off of, not just epilepsy meds. Just stopping them abrutly can cause lots of problems.

I was recently in the hospital and they gave me my meds 4 maybe 5 hours late and I ended up having 3 seizures that night because of it. So I know, even if I wanted to, I would not beable to stop cold turkey.

Is it your drs that want to stop you from taking the meds or is it you?

Im not wanting to stop by meds and my drs are not wanting to stop my meds. The reason I ask is that when my dr admited me to the hospital for a VEEG, he quit me on all my medications. I took my last dose the night before I was to get admited. I got admited the next morning, and he came in that afternoon and said that he wasnt going to wean me off, but completely take them away cold turkey. I ask where I can find information because what ended up happening was 40 hours after having my last dose of seizure medications, I started having seizures. I was on Keppra XR and Carbatrol. When those were taken away, on day 2 of being in the hospital I started having seizures where I was aware of what was going on during them. Prior to these, the seizure I had before were complex partial seizures. I lost consiousness during the seizures and dont recall anything that took place. But when my dr took the medications away, and I started having seizures in the hospital, these were seizures where I was aware of what was going on. I could hear the nurses ask me questions, only I couldnt respond back due to the amount of control the seizures had over my body. I had to wait til the seizure was over before I could respond back.

I asked my dr why I had different seizures, than what I was use to having. He said he didnt know. But I found a site a couple of months ago saying that if you were to abruptly stop taking seizure medications, you could have a different seizure than what youre use to having. Listed was all the other warning signs of not stopping the medications abruptly without a drs consent.

So Im just trying to find any information that I could show when he took me off all my medications cold turkey, how it could explain why I ended up having seizures I never had before? They were new seizures, simple partial, and not the complex partials I was use to having.

 

[valeriedl]

Someone correct me if I'm wrong about this.

When I went into the hospital for some tests done, they stuck all sorts of probes to my head and stopped the meds. They wanted to see where in my head the seizures were coming from.

Could you been having those types of seizures without realizing you were having them? I know that usually reguardless of what type of seizure it is that I'm having, I don't know that I'm having it unless there is someone there to see me have it and tell me that I'm having one.

 

[momof3boys]

Someone correct me if I'm wrong about this.

When I went into the hospital for some tests done, they stuck all sorts of probes to my head and stopped the meds. They wanted to see where in my head the seizures were coming from.

Could you been having those types of seizures without realizing you were having them? I know that usually reguardless of what type of seizure it is that I'm having, I don't know that I'm having it unless there is someone there to see me have it and tell me that I'm having one.

Ive never before in my life have had a seizure and remember it. The seizures Ive had prior to having the VEEG was complex partial and grand mal seizures. The only thing I recall before having the actual seizure was the aura before, anything that I did during the seizure, i dont recall. I remember having a funny feeling, sometimes I would see numbers going backwords in my head, other times I would get a feeling like I wasnt all there... then my mom said she would see me start to pick at my shirt, or smack my lips, my head would turn to my right and my eyes would be blinking like crazy. She said my eye lashes would be going a million miles an hour. After the seizure, I would come to, and be confused and my head would be killing me. My mom was always there to witness the seizures and I've never been consious during any seizures to remember what was going on. My mom was with me during my stay while doing the VEEG and she said she was in shock to see these kind pop up out of no where. The only thing that was different was abruptly stopping all medications instead of being weaned off medications.

with grand mals, my last one i had was in 2000. I went out with some friends, and we came back later that night, when my mom woke up in the morning, she found me on the floor by the bed with slobbers coming out of my mouth, and having a grand mal seizure.

I have never been taken abruptly off any seizure medications before in my life. When I was admited to the hospital for the VEEG, I was told I would probably have my medication doses cut in half. But to my suprise, my dr came in just a few hours after getting hooked up, saying he wasnt going to give me any medications at all. Just going to go cold turkey. He was expecting me to have a grand mal seizure by the following morning, and said to just wait it out til the medication was out of my body. I started having the simple partial seizures the next day.

 

[momof3boys]

I found the article!

I was googling and came across the article that talked about abruptly stopping Keppra can cause a different seizure to occur than what youre use to having! Im so printing this and taking it to my dr next time I see him!

Here's the site:

http://epilepsy.emedtv.com/keppra/keppra-withdrawal.html

Keppra Withdrawal

In order to avoid withdrawal symptoms, you should not stop taking Keppra too quickly. It is also not recommended that you stop taking Keppra without your healthcare provider's approval and supervision. If you suddenly stop taking Keppra, it can cause you to have a different type of seizure or can cause extremely long seizures. To reduce your risk of Keppra withdrawal symptoms, your healthcare provider may decide to slowly wean you off the medication.

Keppra Withdrawal Symptoms
The most important Keppra withdrawal symptom is seizures. Suddenly stopping Keppra can increase your risk of seizures. Sometimes, stopping a seizure medication too quickly can cause you to have a different type of seizure (that you have never had before) or can cause extremely long seizures (known medically as status epilepticus).

 

[epileric]

It is true that stopping your meds cold turkey can provoke seizures but when I had my VEEG they deliberately stopped me cold turkey in the hopes that it would provoke a seizure & they could record it.

 

[momof3boys]

Thats what my dr explained to me, why he was wanting to stop me cold turkey while doing the VEEG too.

I was just always curious as to why I had simple partial seizures, where I was aware of what was going on, rather than the complex partial seizures, where I have never been able to remember anything during the seizures, and always come out of the seizure with confussion, and headaches.

With the simple partials, i was about to be aware of what was happening during the seizure, and after they were over, I felt weak, but didnt have a headache. It was like I could do what I was doing before the seizure occured.

 

[Woodland]

There was a time when I was being overdosed - even though the Dr. would not acknowledge it. On my own I took time off from work and put myself through "detox" in order to reduce and/or eliminate the Rx's that I was on. When I started I was taking a total of 800mg lamictal and 900mg of tegretol. When I was done, I was/am taking 600mgs lamictal and NO tegretol at all. Quick math - that's almost a 65% reduction of Rx.

If at all possible I wanted off of the tegretol first. This had the worse side effects of the two. Even though I took a substantial amount of time to detox from these drugs, (100 mgs. per week) when I "hit bottom" I was in real bad shape for the initial three days after I completely stopped the tegretol. My E is relatively mild compared to most other seizure disorders. In fact, most people would be unaware of a seizure if I had one in front of them. However, during these three days I was actually having convulsions. After the third day, I was and still am fine. I have never felt better. If this seizure activity would have taken place in the presence of a medical professional, I would have never been allowed to continue to detox. I ran out of time/money so I don't know how much further I could have reduced my lamictal dosage.onder:
My point is that withdrawing from these Rx's - even at a very slow rate - can cause worse seizure activities than the ones that you are being treated for. Until you actually "bottom out" (which is three days after your final dose), you won't know the impact that the drug reduction or complete elimination will have on you.
This is why I question the motives of the medical profession who place people through a cold turkey detox in order to record their seizure activity. If they want an accurate representation of a person's seizure activity then allow them to go at a minimum of three days medication free before attempting to monitor seizure activity. Otherwise the only thing being measured is the impact of the withdraw - not your actual seizure activity.
As most of us are aware anti-E drugs are also used for other conditions including irregular heart beat, bipolar, and numerous other medical conditions. If any of these patients stop taking their medications (even through a gradual withdraw) they are also susceptible to seizure occurances. The difference is that they get the benefit of the doubt that the seizure activity is the result of withdraw.
Obviously this is my personal experiences with these Rx's. I don't suggest that anyone go through a detox without continuosly being in contact with friends and/or family. But I firmly believe that withdraw from these Rx's - even a gradual withdraw - can not only cause seizure activity but they can increase the severity of them. Until you can go at least three days without the Rx, you won't know the true impact of the removal or reduction of the Rx.

 

[epileric]

The way I understand it is that they do not want to see what your seizure looks like normally but to see what neurons misfire where & to what triggers but bigger so that it is easier to record.

 

[momof3boys]

The way my dr put it to me on the first day I was admited for the VEEG was that it didnt matter if he weaned me off or took me off Cold Turkey of my medications. He said I had complex partial seizures prior to this, then I would end up having complex partial again after this. He said he also wanted me to have a grand mal seizure, three of them is what he really wanted me to have. But instead of having a grand mal, I kept having simple partial seizures. I went all day monday with no medications, my seizures started tuesday at 2:30pm, I went the rest of the day tuesday with no medications, all day wednesday, and by the evening on thursday, my dr said he was done with it all and put me back on Keppra. I had more thursday, friday and then on saturday I had several within a half an hour time that just kept coming right after each other. That was the scary part actually.

I look up non epileptic seizures becuase in my drs head he is thinking I have non epileptic seizures. The descriptions of non epileptic seizures doesnt even fit the descriptions of the seizures I had during the VEEG. He said the EEG has slowing waves in my left temporal lobe, but then tells me it doesnt come up when he see's me having a seizure on the video. But then two months after all of this is done, he comes out and tells me I dont have epilepsy at all, even though it came up on the EEG?

 

[Endless]

Hi, mom,

You've had so many complications, so many problems with medications, and frankly, so many problems with THIS DOC maybe it's time to see an epi. I know we've suggested it before, but you must be out of patience by now. When my care was switched to a seizure specialist everything changed - for the better. You can argue with your current doc all day, and show him data, and it probably won't really budge him a bit. He may give it lip service, but he sounds like he's not terribly on the ball in general.

Look here to find a regional epilepsy center near you. If there isn't one, it's worth traveling to.
http://www.naec-epilepsy.org/find.htm

 

[mel239]

Even though I was weaned off lyrica last year-i think?? and put back on trileptal at a higher dose i went from complex to simple and it was weird having seizures I could remember after all this time but now the last 2 are back to complex so who knows? Guess I still dont have a handle on what I am having or maybe Im having both.All I know is I have only had 2 since end of March so this combo of trileptal and zonergran is GREAT!!!

 

[Bernard]

http://www.coping-with-epilepsy.com/forums/f23/when-weaning-off-drugs-ramp-down-675/

 

[momof3boys]

Thanks Endless!

I looked up ones in our area and the ones that are in our state are the following:

The one Im seeing now:

Nebraska Epilepsy Center
Nebraska Medical Center 982045 Nebraska Medical Center
Omaha, NE 68105
(402) 559-8600
Level 4 Epilepsy Center
Med Dir: Deepak Madhavan, M.D.
Admin Dir: Deborah K. Istas
46.92 miles away
Map

Immanuel Medical Center Epilepsy Care Center
6901 N 72nd Street
Omaha, NE 68122
(402) 697-1601
Med Dir: Richard V. Andrews, M.D.
CoMed Dir: A.A. Patil, M.D.
Admin Dir: Dee Ernesti, CNE
47.44 miles away
Map

I dont know about the last one, I can look into it and see if its something that can help. The other locations are in another state, and I will have to look into seeing if our insurance will cover them. If they do, I will for sure check into them!