Having seizures & would love support

[[St...]]

 

Hey everyone, I had 2 seizures last night & I’d love your thoughts because it freaked me out pretty bad!

I’m not on this site a whole lot, but I’m not new either 😊 I’ve been off Klonopin 14 months. I took it regularly for 21 years at doses up to 5mg. I tapered off over maybe a year & ½. I never had any seizures after first stopping the med, so I want to say it seems weird that I’d have any now, but…we’ve all seen a million bizarre symptoms, right? What’s one more.

I’ve had some smaller “seizure-like” events happen before last night, but they almost seem to be getting worse instead of better. I don't tend to have traditional windows & waves, but my overall symptoms have been a little higher than usual for about a week. Last night I woke up to a seizure – I couldn’t really move or think very straight, my muscles seemed really rigid, my vision was blurry, I wasn’t convulsing in a way that someone else could see (but there was a little bit of an inner movement feeling), my heart was beating too fast, I was sweating, I had odd sensations I don’t even know how to describe…and aside from being freaked out that that was happening, I had a feeling of panic/worry/fear/impending doom that was NOT normal. I’m guessing this lasted around 5 minutes. As this has happened a couple times before, & I’ve been sent home from the hospital with them saying they can’t find anything wrong, I eventually tried to go back to sleep. It didn’t work, & an hour later the same thing happened again, only I didn’t recover from it as quickly. My mom took me to the ER because I figured they would at least run some tests to rule out anything super serious, but they didn’t. I saw a very young doctor who wasn’t very nice & did the typical gaslighting stuff.

I’d gone to a neurologist a few weeks ago to try to be under someone’s care, but he was having none of the benzo stuff, so I never went back. I tried to give him a very simple explanation instead of overwhelming him with BIND information & everything!

I’m planning on making an appointment with another neurologist, but it could take a while. Does anyone have any advice for this situation? I want to be under a doctor’s care, but they’re not taking me seriously. The ER doctor gave me a printout on sleep paralysis, but I know that’s not what was happening last night. I’m not currently driving, so do I just kinda…deal with this on my own?

Thanks so much for reading <3

p.s. if any of this made you worried about your own symptoms, please don't let it - this is not a typical scenario.

 

[[Le...]]

you dont deal on your own but will likely have to advocate for yourself. if it is only happening when sleeping which certain types of epilepsy do including my brothers then request a sleep study or something. I in no way am diagnosing what is going on but get it looked into until you are convinced. 

[[je...]]

I suggest you see a neurologist and maybe not mention benzo withdrawal. You can mention your benzo medication history but not go into detail about BIND. Ultimately you want to determine if there is something wrong. If they can’t find anything wrong then it seems it has to be something related to withdrawal. 

I have mentioned this a couple of times before but I had GI problems that started a week after I jumped. I thought it had to be withdrawal. After 5 months of increasing pain I mentioned it to my doctor who said it wasn’t withdrawal. She was sure it was gluten related. After lots of tests we confirmed I was non celiac gluten intolerant. The moment I cut gluten out, many of my symptoms disappeared and got better. Not everything is withdrawal related. Maybe this is, maybe it isn’t.

 The most important in my opinion is that the neurologist rules out or confirms any other diagnosis. Not that he acknowledges or confirms benzo withdrawal. 

I wish you all the best. I can’t imagine how scary and difficult this must be.

[[...]]

My son has had symptoms similar to those you describe, they started when he was around 11 months out so it was very unexpected. You'd think seizures happen only at the very beginning of wd. He's never had epilepsy before benzos. Anyway after some months it seems this symptom has calmed down, they are few and far between and shorter in duration although you never know what'll happen with this crazy benzo s**t. 

I'm wondering if this symptom is more common than we think but I've discovered the best approach is not to get scared. In the beginning I'm sure it freaked me out and he picked up on that so it got worse, now I just tell him it's ok and it calms down pretty fast. Or maybe it has nothing to do with that, but it does seem to help. (I always tried to check his oxygen levels and pulse while this was going on, they're always within normal range.)

[[...]]

I've had something of the kind a couple of times since my 6th month after the jump. One night this January/ February it felt particularly strong. I'd been checked up by a neurologist a month before the "fit' and told i seemed to be ok, so i wasn't concerned what it was but, nevertheless scared.

I agree with @[je...], you needn't go into detail about benzo withdrawal. It's more important for you to have a specialist in the field of seizures giving a professional assessment on your physical condition. It doesn't matter whether they believe in benzo withdrawal or not. Mine doesn't and yet she helped. 

I'm not sure what steps should be taken if you're ok and it's "just" WD. I didn't do anything but i didn't have it often. Still scary it can come back one night. It was beyond awful. Really can understand you here. Just hope for the better for you and wish recovery with all my heart!

@[St...], I'm 14 months benzo free too🙂

[[St...]]

 

Thank you all so much for replying!!! I appreciate it so much!

 

@[Le...] I think you’re right. I am literally back in school for social work, where my professors talk about advocacy all the time, but I just hate explaining the benzo stuff hah 😊 But yea, whenever something comes up with my health that worries me, I’m just gonna go to different doctors until I feel it’s been looked into enough. Good advice!

 

@[je...] thank you, I think that’s smart. The neurologist I had gone to was willing to arrange I think a ct scan and something else, I just didn’t take him up on it because he was so dismissive of the BIND stuff. But you’re right, I really just need to know if something is wrong that I should be doing anything about period. So glad to hear you got your issue taken care of!

 

@[...] that’s so strange to hear, but I appreciate knowing that I’m not the only one experiencing this! Like your son, I’ve never had any sort of epilepsy before stopping the benzo. I completely assumed seizures were only a risk for maybe the first month after stopping (if you stopped too quickly). But it’s almost like every time one symptom stops or lessens, a new one starts…like only so many parts of the body can heal at a time. I think you’re an amazing mom for helping your son during this absolutely insane benzo period! My mom has been the one person really helping me through this, & I have never appreciated another human being so much in my entire life. I hope your son heals soon.

 

@[...] thanks for sharing, I’m so sorry you’ve had a similar experience! And congrats on powering through 14 months! I hope you’re having less symptoms than I am, hang in there. I think it’s still pretty normal to have a ton of symptoms at this point. If you ever want to talk to someone who’s been off the same amount of time though, I’d be happy to write. Fingers crossed we both have massive improvements by 18 months! I believe we will.

 

[[je...]]

1 hour ago, [[S...] said:

The neurologist I had gone to was willing to arrange I think a ct scan and something else, I just didn’t take him up on it because he was so dismissive of the BIND stuff. But you’re right, I really just need to know if something is wrong that I should be doing anything about period.

Yes, I think you need to do those tests. At least it will either rule out or confirm other potential issues. If this is benzo related, it won't show up on any scans or test anyway. But I understand how frustrating it is when we struggle with symptoms and it gets dismissed.