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  • BDD Moderators: Keif’ Richards | negrogesic

Rapid taper for *any* benzos = seizures?.. (Even years later?!)

kace

Bluelighter
Joined
Jun 12, 2010
Messages
680
Hi, I would love some insight from people who understand this topic.

I was physically addicted for months, and taking the equivalent of 150 mgs+ day of diazepam in 2012.

After about 8 months out, I ran out, had an conscious, but otherwise, grandmal seizure from the waist and down. I was incredibly freaked out, as they were only thienodiazepines! The next day, I went to a medical professional for help. -- (I refuse and think everybody should NOT tell docs about unlicensed/ unknown benzo meds- PLEASE NOBODY DO THIS- think what would happen if they became illicit- everyone addicted to them would have seizures/ horrid w/ds! So please, just as you got addicted to them, do - not - make - others - suffer.. )
-- I worked out the equivalent of the thineos are- roughly 150mg +, told the doc, and was honest about the seizure/ other benzo w/d symptoms.. The doctor immediately put me on 30 mgs of diazepam a day, which I tapered off 2 mgs - 5mgs every week or so. I've been stable on 2 mgs a day since '14.

For months, years even, on the taper plan, I was still in savage benzo withdrawals. I thought they were real, but not serious, as they were overseen by a doctor. However, since '12- '13, I have had a terrible memory of events and a few times a week, wake up on the floor, extremely confused with no recollection. I've heard of others finding me on the floor, but have no memory of even seeing them. As I have lived by myself, I've learnt to live/ hide it from others by not going out. Since it started, for years I kept it private between me and my doctor. In return, he treated all the symptoms- referred me to a shrink, gave me bladder control pills, gave me pregabs/ betablockers/ antipsychotics/ SNRIS/ sleeping pills/ steroids/ etc.. In December '13, I eventually gave up seeking even my doctors help for the seizure episodes, and self medicated using heroin (first hoping OD to get it to stop, but smoked it instead which made living with problems more doable).. I continued the benzo taper with G.P, just didn't bother speaking or trying to get help for physical health from 01/14 - 12/15.

For for first time since this started, I'm seeking -other- medical advice from another surgery. Every other doctor, nurse and professional has confirmed my suspicions about the seizure-like events, and I'm being sent to a neurologist asap.

Please: Nobody make my stupid mistake!! Go with your suspicions, don't 100% believe someone just as they are a doctor. Get a 2nd or 3rd opinion if a diagnosis doesn't feel right.

I was wondering--

How on earth can someone *still* experience seizures when they've been on a stable dose of 2mgs for over a year? :/

If benzo seizures are recurrent enough, can they causes permanent damage to the brain? Will it effect the neurology of my brain? :/

Should I do anything about the slight neglience of the original doctor? (I don't blame him for the problems, just wish he had listened to my complaints about passing out with no memory more seriously, referred me to someone who wanted to find out what was wrong, instead of treating the related symptoms individually... ) I don't want him to get fired/ get in trouble. He might then refuse to help patients in benzo w/d! He just should of put the pieces of the puzzle together, by himself.

Also: any advice on what to do about the seizures?
( I had one again yesterday. Have a few a week (I think?).. Thanks Dr Google for letting me know it's normal to not remember them!

I'm sorry for the stupid questions.. I honestly I thought (and so did my old G.P!) I was going mad/crazy/dumb for having moments of confusion and having no recollection, physically weak for waking up on the floor all the time, with the bladder incontinence of an old women, etc etc..
I knew seizures where common short term with benzoo, but I didn't know long term ?! Ugh.. Well...
 
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I think it is bad advice to tell people not to be upfront with medical professionals about RC drug use.
For one thing, they are still working out how to treat (addiction to) these drugs.
Secondly, if other people present with complications from similar drugs - the staff may know something about it.

I had withdrawals/seizures from flubromazolam. I had a very uneventful taper off, and was honest with the docs and nurses the whole way through. Its for the best; medical folks don't write drug legislation.

As for your questions - SEEK MEDICAL HELP IMMEDIATELY. Seizures can kill you and all manner of serious injury.
 
I know. I am just so scared it will put others addicted through unneccersary hell. (It was actually a comment someone on BL wrote to me, years ago, that made me not say the same. They got pissed I went to a doctor.. and yeah)..
I would love for there to be more awareness of the dangers of them, I just can't stand the thought of them being made illegal, and people going into comas/ seizures/ dying. :(
For the general public, with no interest in pharms/ RCs, it will never be a problem. It's just for the RC, self medicating community it will cause massive problems for. I like to think, those who take them are aware of the dangers, have done their research and know the basics. (Benzos = ashton manual!)

I was honest to the doc about the type of drug (thienodiazepine), how it's a RC in the Uk and is a prescription for anxiety meds in other cultures. Due to the backlash effects on others, refused to tell him the name (not that he was even interested, lol). I did hours of research working out the equivalent from the drugs similarities with Xanax. I know it wasn't 100% accurate, but, ah, judging from my bodies inability to cope being on 30 mgs- I was pretty close !!

From personal experience with doctors- I do not trust them!! They are scared of giving benzo patients necessary high dosages (even if they have seizures, wtf?!). He agreed on my estimate of 150 mgs, but still put me on 30mgs... wtf... (Most likely scared of back lash effects from prescribing "black listed" drugs.)

The situation frustrates me so much, I'm contemplating writing my own study on the effects + best solution.. With a published academic study, do you think doctors/ medical health care professionals would *listen* and improve their treatment of patients?

I'm sorry to hear about your similar experience. Thank you for being honest <3
(I'm sorry for my mistrust/ fear of doctors!)

And yeah, I'm seeking medical help. I've been in hospital 3 times this month for them.. I only worked out it was seizures a week ago (after 2 hosp visits!! Seizures = memory loss/ confusion, couldn't explain what was wrong.. ) the docs don't tell patients much either, till solid evidence from MRIs/ EEGS (but apparently they don't detect seizurs 100% either!!)
It wasn't till my 2nd trip to a&e, when I asked for copies of my discharge, and read a request for "referral for neurology", that I used Dr Google and realised it was seizures.. I took my research/ evidence/ theory to G.P, and had it confirmed by two different doctors.

I'm waiting to see a neurologist, but the NHS sucks, and it'll take up to 4 weeks.
After a seizure on the 28th, I think, I got help, had an appt at hospital. The doc confirmed seizure symptoms, but didn't have any advice. He said- "there's not much doctors can do till you've seen a neurologist". So, yeah.. :/ -- Why I'm on BL..

Really?? Seizures can kill you?!!
Fuck!! I didn't know!!
From hitting your head when falling over, or.. ?? OI'm sorry, I don't want to google it, it'll freak me out.. and I have a feeling stress = increases chances of having one again? (Just a guess from experience, please correct me if I'm wrong). x
 
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God damn. Fucking so alone with this BS. :( I'm sick of being "past help" from others. It's so incredibly depressing when I *NEED* support, am alone, in hospital, fucking terrified. :(
I'm sorry, I am desperate for help but don't know where to to turn, everyone (even BL?) is giving up on me. :/ Please don't? :( I know I suck, I hate myself SO much for this BS.
I'm that fucking.. alone, any reply/ response/ message = awesome. I would give someone money;/ whatever people want to just be there for me.
(Just had it confirmed that private healthcare companies won't GO NEAR me thanks to existing problems, fucking awesome!) :|
 
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