8 weeks and 7 seizures later

[[IH...]]

So how's its going guys. I cold turkey'd my 15mg of valium a day habit, just over 2 months ago. I was taking it for about 2.5-3 years. March 19th was my last day/dose. I have since had a spread out 7 seizures. Every one lasting under 4 minutes each. I go to the ER and  am released withing 2 hours. My EKG's, CT Scans and everything else comes out fine/inconclusive. I've read about this Protracted WD. I have a feeling that is what I'm going through. I have been prescribed 200mg Vimpat and more recently as of today, 250mg of Depakote. Both twice a day.

I'm keeping hope that this will stop sometime soon. I have yet to see a nuerologist. However I have an open referral for one sometime soon.

I've not experienced anyother side effects of WD, aside from poor sleep.

 

What's everyone's experience and opinions on this experience? Can Protracted WD really last this long? If so, how long can I expect this to last?

 

 

[[Re...]]

Hello @[IH...], Welcome to Benzobuddies,

Congratulations on being off Valium for two months!

Cold turkey is the difficult way to stop benzodiazepines, we have, however, many many members who quit benzos this way and are out there living life. These symptoms (the insomnia) you experience may last a while, it is hard I know, and I am really sorry.

I can not tell you how long that is precisely. Have you been able to fulfil your daily duties going through this?

I can reassure you that you will get better, that is for certain! Please have a look at our Success Stories section!

Please make yourself at home and you migh try the search function on the upper right side of the screen.

Take care

[[Re...]]

Does your doctor know you stopped benzos this way? Were you forced to do this, have you been to a hospital with these seizures, did they prescribe you the anticonvulsive medication?

(Sorry, I feel I need to ask in addition).

[[IH...]]

12 hours ago, [[R...] said:

Hello @[IH...], Welcome to Benzobuddies,

Congratulations on being off Valium for two months!

Cold turkey is the difficult way to stop benzodiazepines, we have, however, many many members who quit benzos this way and are out there living life. These symptoms (the insomnia) you experience may last a while, it is hard I know, and I am really sorry.

I can not tell you how long that is precisely. Have you been able to fulfil your daily duties going through this?

I can reassure you that you will get better, that is for certain! Please have a look at our Success Stories section!

Please make yourself at home and you migh try the search function on the upper right side of the screen.

Take care

I appreciate the reply. The seizures unfortunately caused me to lose my job. I'm lucky enough that my wife is a stay at home, and has been there for me since the beginning. With how random the seizures are, it's now caused me to hesitate on going out and about. With how many times I've read and heard that going outside and being out and about helps, I'm very hesitant on doing so. As for being on anticonvulsant, I am on 200mg Vimpat X2 a day. And as of yesterday, the ER doctor prescribed me 250mg of Depakote as well. Twice a day. So we will see.

I was taking them unprescribed. 😞

Live and learn. I have been very open with every doctor/nuerologist I have talked to. My primary doctor knows everything. Just waiting for my nuerologist referral to go through. And tes I have gone to the hospital minutes after every seizure. I wake up and the EMTs are already at my house.

[[Re...]]

Hello @[IH...], I am so sorry to read about this situation, it must be so difficult for you.

I is hard to understand (for me ) why you were let home from the hospital after having multiple seizures (?).

To be honest I/we do not have much experience when it comes to having seizures after a CT cessation of benzos, this does not happen often at all. We usualy deal with another cluster of symptoms you refer to as "protracted withdrawal", but protracted in the online community only means suffering symptoms beyond 18 months. I am myself suffering from these for almost a year. No, I would have never thought that a medication can cause such "injury " or sensitization. (Important to mention there is no proof of a per se injury). But I am trying to be really positive about my recovery and I do see changes (history in my profile).

I will try to paste some sources of information you and your partner might find useful:

You might want to visit the website of the Benzodiazepine Information Coalition, with many resources. They do not offer medical support, but may refer you to professionals who are knowledgeable depending on where you are. It might be worth a shot.

The late Professor Heather Ashton has a protocol how to cessate benzodiazepines with the help of transferring them to diazepam. It does not discuss seizures as far as I know. The symptoms are detailed in this publication,  along with a very positive tone, good coping mechanisms. 

The Maudsley Depescribing Guidelines by Horowitz and Taylor (2024) are also very useful for people and professionals,discussing primarily tapering schedules. 

I hope the neurologist will be able to help you and provide you proper anwsers and solutions. Please update us on how your therapy turned out, and how your symptoms are changing.

I wish you well @[IH...]!