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Having Partial Seizures after Stopping Flexeril (Part 1)
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Anon_160307 posted:
I have been managing chronic pain for over 12 yrs now and I felt like lately, my pain has been coming more and more under control along with finally successfully managing severe constipation with a stool softner along with a 8 oz glass of unsweetened prune juice nightly. I am on 50 mcg/hr Fentanyl Transdermal and I am allowed four 10 mg oxycodone IR pills for breakthrough pain. Haven't had to use all four yet and most days I only need 2 1/2 but it is SO NICE to have leverage should I need it when increasing my activity level.

About 3 months ago, I tapered my dose of Flexeril from three 10 mg tabs a day to two as I was getting severe dizzy spells and tremors from it. Once I tapered, the tremors went away but I was still getting dizzy spells. I finally decided to stop Flexeril cold turkey about 3 weeks ago. Before completely stopping the med, I had been taking Flexeril for over 6 years daily and this year I realized I didn't need it anymore as my new stronger pain meds were covering my pain. When I stopped the Flexeril, I had uncomfortable withdrawal symptoms. Cold sweats (my body was cold but I was still sweating), chills, shaking at night. But after 2 weeks all of those symptoms went away.

Then last weekend, the seizures began. They only happen when I am very sleepy either from being up all day and it is late at night or during the day on the weekend when recovering from a long work week. Last weekend, I had a couple of seizures that were pretty mild such that I thought that I had a seizure, but I wasn't entirely sure it did.

The seizures begin when I am nodding off or starting to fall asleep in my arm chair while on the computer browsing the internet and reading articles before bed. I continue to wake myself to try to finish reading before bedtime. After about 5-7 times of reawakening myself, the seizures started. First I lose muscle rigidity on the right side of my face and my jaw drops and I noticed I make a yawning sound during this phase and then shortly after that the convulsions begin. The first two seizures had no aura (or warning) BUT Friday night I knew for certain that I had a seizure. There was an aura beforehand. I had a dream like vision of going to the garage downstairs and opening the door. When I looked out, one of our cars had the driver's side door wide open and our old stroller that is stored in the left corner was unfolded and rolled out into the middle of the garage between the two cars. I closed the garage door went back upstairs and began to drink my bottled water. Then I realized I was asleep again, woke up and had another seizure except this time it was much stronger! I tried to "get myself out of it" and it tightened its grip on me and the muscles in my neck tightened up so much it was hurting...I heard my voice calling for help and groaning but it was very faint. I tried to speak to ask for help but nothing came out so I just stopped fighting and waited for the convulsions to stop. After the seizure, I realized that I didn't leave my chair and my bottled water was unopened. I was quite shooken up to say the least after that.

Please see the reply to my post for the last part.
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Anon_160307 responded:
Here is Part 2:

I don't have a history of having any seizures. The prescription leaflet for Flexeril does not mention that seizures are possible with abrupt withdrawal so I plan to contact the FDA and report this adverse effect. I have been laying down in the bed when I am very tired now and I haven't had another seizure since Friday but I am very scared. Should I be concerned? Do seizures caused by withdrawal get worse than what I have already experienced before they get better? Has anyone had this happen to them and after the withdrawal phase, the seizures stopped or am I doomed to epilepsy for the rest of my life? What type of doctor should I see for this type of thing? I am very freaked out and scared I will have a seizure while driving or instead of the partial seizures I have been having, end up having a tonic clonic or grand mal seizure. I know benzodiazepines will do this upon abrupt withdrawal but Flexeril?!? Please help me understand what is going on.
 
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77grace replied to Anon_160307's response:
Well.I just tried to reply to you and it did not go through so I will make this shorter and then post more latter!I to have haD SEizures,even Grand Mal!Its nothing to mes around with!Were you taking anything else???I have never heard of this from Flexeril!I also did ot know you could be aware of having a seziure!Maybe all mine were Grand Mal!!Also A thought came to me,they may not even be related to medication!Mine were definately from withdrawel!
Please get help now!!!!Try not to drive!Call your Dr. tommorow morning!Let me know how you are doing!!!
Blessings 77grace
 
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Anon_160307 replied to 77grace's response:
Hi 77grace,

Thanks for the response. I am doing okay just tired. I took a nap early today for a couple of hours but I am tired again. With partial seizures you maintain consiciousness, you don't lose consciousness. You still can't move or cry out for help you just know that mentally it is happening. It only affects one hemisphere of the brain. I went to the www.epilepsy.org website and it said that partial seizures are harmless but I am concerned about this potentially leading up to something bigger.

I am concerned but I don't feel in danger. I am not driving and I am at home. I only have had the seizures when I am sleep deprived. I haven't had any spontaneous seizures. I really think it is Flexeril withdrawal. I did some more research, and found that Flexeril can cause seizures but it is rare (<1%)...which sucks for me!

When I try to fight sleep and continue to wake myself after I have fallen asleep; those are the times I have had the seizures. Now I just go to the bed and let myself fall asleep instead of trying to stay awake. I have read there are epileptics that after getting on anti-convulsant medication, only have seizures when they are asleep or falling asleep.

I don't do any illegal drugs and I NEVER EVER drink alcohol. I eat relatively healthy and drink at least 6 glasses of water a day and many times 8 glasses of water a day...this is why I am even more confused. I am on the 50 mcg/hr Fentanyl patch with oxycodone for breakthrough pain, low dose of Valium, Gabapentin, Remeron for depression and anxiety, BP meds and a multi-vitamin and calcium supplement.
 
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annette030 replied to Anon_160307's response:
Please see a doctor about this, a neurologist is the proper specialty for seizures. I am not convinced this was actually a seizure though, he will know and can do tests that will determine what is going on.

Take care, Annette
 
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bren_bren replied to Anon_160307's response:
I'd definitely go se a doc about this as soon as you can. Looking things up on the web just promotes more anxiety w/in me, as it may with you. I have never been on a single med for that long so I don't know if withdrawal is still taking place. Didn't you ween down? You can guess yourself silly, and until a neurologist can run the right tests it'll remain an uncertainty. I'm at least glad to see you have decent pain control. Let me know how it turns out!
 
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Anon_160307 replied to bren_bren's response:
Hi Bren Bren/Annette,

I guess both you and Annette are right that I should go see a doctor. I am glad to know that a neurologist is whom I should see so I'll start there. I speculated but wasn't sure.

I am pretty certain it was a seizure as the epilepsy website had the symptoms and I could check off that each one of them occurred for a partial seizure. I guess epileptics have these types of seizures all the time and they are harmless...even grand mals are harmless as long as the person's airway is clear so they don't choke and as long as the grand mal seizure doesn't last for more than 30 minutes. Many caregivers of epileptics carry these magnets that can stop a seizure before the brain does on its own.

On their webite, they also have a pdf file that lists all of the meds that "provoke" seizures and Fentanyl, oxycodone, my anti-depressant Remeron, and Flexeril (in withdrawal) were on the list. Also the website said that the first seizure a person without a epilepsy has typically occurs when they are sleep deprived. So I truly think it was a combination of Flexeril withdrawal coupled with my other meds that lower the seizure threshold, and being sleep deprived. All of those worked together to create the perfect storm. I am very tempted to just wait a month or so for my body to get used to not having Flexeril in its system to see if things improve since they aren't happening spontaneously and they are partial seizures so I don't lose consciousness.

I'm wondering has anyone here had seizures from withdrawal of a med (not just Flexeril), and if so, did the seizures go away with time or did they get worse?

Bren Bren, I tapered from three 10 mg tabs per day to two 10 mg tabs and stayed at that dose for a couple of months but then I jumped off of Flexeril completely from two 10 mg tabs per day and it was shortly after that, that the seizures began. I didn't do a full taper down to zero. I truly didn't even think the Flexeril would give me withdrawal symptoms! I guess that is why the pharmaceutical company stresses that Flexeril is for short term use only but many chronic pain patients use muscle relaxers per their doctors instructions over the long term; however, I think it causes more problems long term than it helps. I tapered from 3 to 2 and then jumped off, which I probably shouldn't have done but it wasn't working anymore and making me dizzy and not feel well so I wanted off of them right away. I know not tapering is bad...very bad. *spank* *spank*!
 
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annette030 replied to Anon_160307's response:
Please do see a doctor for a proper diagnosis. They can examine you and also get blood tests, and other tests that you may need. In your specific case an EEG over time would show your brain waves and make a diagnosis much easier as brain waves change during any kind of seizure.

The symptoms of many different illnesses can be the same, the internet cannot see you or do any tests at all. Some sites are very reliable, other not so much. In other words, there are lots of completely inaccurate things on the internet as well as helpful things.
Take care, Annette
 
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An_244127 replied to Anon_160307's response:
Hi, Anon, I am new to this website and do not post often, but when I read your post, I wanted to respond. I have a history of seizures (grand mal) and when I had my first one in 2005, I was at work and during it I fell and hit my head. When I went to the hospital, none of the doctors could figure out what had caused it. Over the next four years I had a total of 5 seizures. I have seen many neurologists and had many scans and tests, but they can't figure out the cause. I am on topamax now for them. I was taking a prescription for fiorcet for a couple of months for migraines before the first one and then stopped it and I often wonder if that provoked the first one and then after I hit my head the others happened, but I don't know for sure. I would suggest seeing a neurologist and having an EEG scan just in case, please don't wait on this. Take care and let me know what happens.
 
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Anon_160307 replied to An_244127's response:
Hi All:

Just wanted to let everyone know that in order to be seen in the Neurosciences dept of the teaching hospital I go to for evaluation of the seizures, I have to have a referral letter from my PCP (my insurance does not require referrals but the neursciences dept. requires referrals from everyone). So my PCP office said that in order to get the referral letter, I have to be seen so I am going in on Tuesday to talk to my PCP about my seizures. And then there will be a delay due to transmittal and processing of paperwork and then FINALLY, I will be able to make an appointment with a neurologist.

So it looks like this seizure has opened up a new can of worms as far as dr appts, evaluation, and testing goes. I really don't need more appointments and testing on top of my monthly PCP appts for PM but I would really like to know whether or not the seizures are coming from the Flexeril or some other reason. So it looks like it will be a month...maybe two or three before I know the reason behind them.

I did read on the web that most patients diagnosed with epilepsy had the 2nd seizure within 3 months from the first (60%) or within 6 months of the first (95%). So if I make it 6 months with no seizures, it will prove the Flexeril withdrawal was the cause especially if the brain scans I am going to have come up inconclusive.

I just thought the medically community would want you to get in ASAP after having a seizure but apparently not. To them a seizure is a sneeze!
 
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peskypain replied to Anon_160307's response:
I have never heard of that happening with stopping Flexeril or any type of muscle relaxer like that (Robaxin or Skelaxin)...I have started and stopped all of those over the years abruptly without a single issue..

It's usually medications like Benzos, Antidepressants, or even possibly Tramadol.....but again...not from Flexeril.

So that is why it's important that you see someone and find out what is really going on and if in fact it was a seizure.

I'm not sure what other paperwork needs to be done once you see your PCP on Tuesday...Once you have the referral that can easily be faxed over to the Neurologist and then they make the appt. Your Dr. will be able to help you then so don't worry about it. I can't imagine why it would take months for you to figure this out.

And even if they did...that would mean they don't feel anything is emergent. If your PCP feels this way, they will make things happen faster or even send you to the hospital for immediate testing.

This is where the internet can cause more anxiety/worry if you are now thinking you have epilepsy or something like that...Try not to project too much into the future...And even if you never have anything happen again...it still doesn't verify that it was the Flexeril or that it was even a seizure.

Let the Drs. do the diagnosing and don't try to match symptoms up to something online....again..that will just cause too much worry.

Good luck...
 
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Anon_160307 replied to peskypain's response:
Here is a link to website and at the bottom there is a pdf file that list all of the medications that cause seizures and Flexeril is indeed on the list:

http://www.epilepsy.com/epilepsy/newsletter/Jul09_AEDS

Also if you go to www.drugs.com or another site like that and pull up the drug information, seizure is listed as one of the side effects.

The www.epilepsy.com website also mentioned that most people without a history of seizures have their first seizure when they are sleep deprived. They also said stress and anxiety also are triggers for seizures. And given that Fentanyl, oxycodone, and Remeron; which are all meds that I take are on the list of meds that lower the seizure threshold, I am pretty confident that I created the perfect storm: Abruptly stopped Flexeril while on 3 meds that lower the seizure threshold, sleep deprivation (falling asleep repeatedly as I was utterly exhausted), and I am under extreme stress right now with my job (the workload is astronomical) and due to going through the house buying process.

I could be wrong as I don't have any medical tests to prove anything yet. But it all makes sense and all the symptoms matched perfectly.

I agree that the internet has increased my anxiety about this as everyone tells me to get to the doctor right now or tells me they are not so sure it was a seizure...then what else was it?!? :0

I know everyone means well and I truly APPRECIATE the responses as they were all very caring but they did up the worry factor a bit.
 
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annette030 replied to Anon_160307's response:
It sounds to me like your pcp has to see you and determine if indeed you had a seizure, before the neurologists want to get involved. If your doctor (pcp) thinks it was a seizure and that it is important that you be seen right away, he will arrange it for you. He does not want the legal responsibility on him alone anyhow.

Take care, Annette
 
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annette030 replied to Anon_160307's response:
I went to the first site you provided a link to and did not find flexeril or its generic name on the list at the bottom of the page. It also did not say that these meds "cause" seizures but that they might "provoke" seizures, and that folks who have seizures already might discuss with their doctors taking alternate drugs. It did not say they should not take these drugs, just to discuss it with their doctor.

A "full table" of other meds does include flexeril but not "in withdrawal".

This site is dealing with folks who have epilepsy or a history of seizures, I think. Do you have any history of seizures before this episode?

I did not find who sponsored this site, do you happen to know? It is important to find this out so you can get an idea about where they collect their information.

Take care, Annette
 
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77grace replied to Anon_160307's response:
Hi Again
Yes,I did have sezures ciming off other drugs!Valium is one.Ultram and Fiorinal!They are all for pain or muscel spasam and Horrific as they were Grand Mal!I did'nt know they were ciming and had no memory aftetwad!The first time I woke up I guess a day or so latter in the hospital and the others in an ambulance(at least then I knew what had happened!The medical people explained it !!!
The worse was 2 in one day!!!!My brain was toast for severaldays!!!!
Have you been to a Doctor to find out whats up???
77grace


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