Benzodiazepine

[jdw100]

Couple of recent EEGs show my epileptic brain is having a good few spikes during sleep.

Not ideal.

I’m at the limit for my anti-seizure drug so we can’t just add more.

Looking at various options my Neurologist has chucked me a benzodiazepine to try for a few months.

This is in the same group as Xanax etc. It is used as a therapy for anti-seizure but more often for mental health issues like anxiety. Now my currents meds also get used for bi-polar, schizophrenia, cocaine addiction…. I’m none of those nor an anxious person.

I have woken up both mornings so far and been stumbling around a bit fogged up and had to have a sleep both afternoons for a couple of hours.

Addiction seems to be concern.

I gave up drinking as soon as instructed not to drink (7 years ago), used to like a bit of gear but moved countries and not touched it since, am able to stick to a diet. Had all those tablets the Americans get hooked on when i shattered my shoulder but didn’t find them at all moreish…so I should be okay?

Anyone used them or have any experience to share?

[madmedman]

Depends on the dosage and type. Is it clonazepam or diazepam you have been prescribed? Also, you're on reasonable doses of antiepileptic already? And not on any seizure threshold lowering drugs? You mentioned you're on drugs used for schizophrenia. I hope not as antipsychotics lower threshold already.

[Defcon5]

When you say you used gear, do you mean heroin?

If you managed to give that up, I’d say you shouldn’t have problems stopping using anything else!

[nuyorican]

Withdrawal from benzodiazepines is no joke though. I’ve known a few people who have gone through it. Including one who said it’s worse than heroin withdrawal. You can actually die from it.

Not trying to be that guy who’s all doom and gloom. If they can be managed right I’m sure they can be a great help to a lot of people. I know one mate who is prescribed diazepam for his bad back. He’s been using them for years without issue. I think it’s just on an ‘as needed’ routine though rather than regular dosing.

[jdw100]

madmedman said:

Depends on the dosage and type. Is it clonazepam or diazepam you have been prescribed? Also, you're on reasonable doses of antiepileptic already? And not on any seizure threshold lowering drugs? You mentioned you're on drugs used for schizophrenia. I hope not as antipsychotics lower threshold already.

Alprazolam. 1mg.

Currently on 2mg of Lamictal.

I only mention schizophrenia as it’s one of the treatments used for this and bi-polar. . Lamictal, like a lot of drugs used in anti-seizure has loads of indications. Apart from Epilepsy my brain is fine!

Have my kidney/liver function checked every few months and I tolerate the Lamictal well. Its the fourth (?) drug we tried and has worked well so far.

[jdw100]

Defcon5 said:

When you say you used gear, do you mean heroin?

If you managed to give that up, I’d say you shouldn’t have problems stopping using anything else!

Ha ha..coke.

[jdw100]

nuyorican said:

Withdrawal from benzodiazepines is no joke though. I’ve known a few people who have gone through it. Including one who said it’s worse than heroin withdrawal. You can actually die from it.

Not trying to be that guy who’s all doom and gloom. If they can be managed right I’m sure they can be a great help to a lot of people. I know one mate who is prescribed diazepam for his bad back. He’s been using them for years without issue. I think it’s just on an ‘as needed’ routine though rather than regular dosing.

Thanks - useful info.

If it works - could be longer term for me.

See how it goes I guess. Like any drug I would very gently taper it.

Reading on the subject says can take a year!

Hoping the side effects go - I’m too old to take a nap in the afternoon yet.

[andymc]

jdw100 said:

nuyorican said:

Withdrawal from benzodiazepines is no joke though. I’ve known a few people who have gone through it. Including one who said it’s worse than heroin withdrawal. You can actually die from it.

Not trying to be that guy who’s all doom and gloom. If they can be managed right I’m sure they can be a great help to a lot of people. I know one mate who is prescribed diazepam for his bad back. He’s been using them for years without issue. I think it’s just on an ‘as needed’ routine though rather than regular dosing.

Thanks - useful info.

If it works - could be longer term for me.

See how it goes I guess. Like any drug I would very gently taper it.

Reading on the subject says can take a year!

Hoping the side effects go - I’m too old to take a nap in the afternoon yet.

valium etc is harder to get off than heroin so I am told

[madmedman]

jdw100 said:

Alprazolam. 1mg.

Currently on 2mg of Lamictal.

I only mention schizophrenia as it’s one of the treatments used for this and bi-polar. . Lamictal, like a lot of drugs used in anti-seizure has loads of indications. Apart from Epilepsy my brain is fine!

Have my kidney/liver function checked every few months and I tolerate the Lamictal well. Its the fourth (?) drug we tried and has worked well so far.

Alprazolam is a strange choice as it would be off licence for epilepsy and not available by prescription from NHS. Is it private neurologist?I would have gone for clonazepam which has a proven track record.
May I ask which type if epilepsy you have? And I guess they have already tried combinations?
I wouldn't worry about lamotrigine 2mg. The bipolar depression dose is much higher.
Has the neurologist tried you on adequate doses of antiepileptics already before moving to benzos? Lamictal dose is tiny.

Also, you will need to stop it if you get a rash. (Of course with proper medical advise and not from PH

Edited by madmedman on Saturday 24th February 20:20

[madmedman]

Also as a general rule of thumb, the dependence with shorter acting benzos is much more rapid and worse. Rebound seizures will be a concerning issue if tapered off inappropriately.

[jdw100]

madmedman said:

jdw100 said:

Alprazolam. 1mg.

Currently on 2mg of Lamictal.

I only mention schizophrenia as it’s one of the treatments used for this and bi-polar. . Lamictal, like a lot of drugs used in anti-seizure has loads of indications. Apart from Epilepsy my brain is fine!

Have my kidney/liver function checked every few months and I tolerate the Lamictal well. Its the fourth (?) drug we tried and has worked well so far.

Alprazolam is a strange choice as it would be off licence for epilepsy and not available by prescription from NHS. Is it private neurologist?I would have gone for clonazepam which has a proven track record.
May I ask which type if epilepsy you have? And I guess they have already tried combinations?
I wouldn't worry about lamotrigine 2mg. The bipolar depression dose is much higher.
Has the neurologist tried you on adequate doses of antiepileptics already before moving to benzos? Lamictal dose is tiny.

Also, you will need to stop it if you get a rash. (Of course with proper medical advise and not from PH

Edited by madmedman on Saturday 24th February 20:20

Thanks to everyone for the comments.

I am on 4mg a day of Lamictal not 2.

My Neurologist is indeed private. Although, via my wife, I qualify now for BPJS (Indonesian version of NHS).

So I get the same specialist, same hospital, EEGs, consultations, blood tests and medicines for the equivalent of £15 a month. Generally do EEGs and blood tests all in same day and have results emailed often received before I get home.

Can’t fault my specialist and in fact got a second opinion in Singapore a couple of years ago. He agreed with her approach. Weve been through 4 medicines to get to what seems well controlled.

Hardly ever have any events. Certainly no shoulder destroying tonic-clonics, frogs embedded in the pavement, burnished gold song lyrics in a tree etc. Also the most terrible visceral paralysing fear (emotional centre being triggered), even going down on a plane would not give me fear like that.

Intense deja-vu maybe every six months, generally if I’ve got too tired.

Clonazepam a few years ago left me like a zombie with morning sickness.

We settled on Alprazolam as I had been thrown a few by doctor at local hospital after two days of complete insomnia. Seemed okay. Insomnia can be a side effect of Lamictal, as is the deadly ‘get to hospital now’ rash!

We’ll review again in a few weeks - next day appointment…QR codes so no checking in at reception.

Funnily enough my surgeon from Jakarta sent me a WhatsApp yesterday, just checking in. Kept an interest as it was quite a rebuild. Must remember to send a bottle of whisky his way this week.

Anyway, thanks all again for the comments and assistance.

We’ll see how it goes.

If I’m begging you for spare change for Benzos in six months time….

[sherman]

Here was me thinking taking only Sodium Valporate for my epilepsy was fun.

I had to change from Tegratol to Sodium Valporate during lockdown. I had a few fits in that period. My consultant figured after 35 or so years of taking various form and strengths of Tegratol it probably wasnt effective anymore.
I weaned myself off as prescribed Tegratol whilst introducing the Sodium Valporate over 3 months.
Felt much better after the switch.

[jdw100]

sherman said:

Here was me thinking taking only Sodium Valporate for my epilepsy was fun.

I had to change from Tegratol to Sodium Valporate during lockdown. I had a few fits in that period. My consultant figured after 35 or so years of taking various form and strengths of Tegratol it probably wasnt effective anymore.
I weaned myself off as prescribed Tegratol whilst introducing the Sodium Valporate over 3 months.
Felt much better after the switch.

Good stuff.

As above took me four goes to get stable.

Had one that acts as an appetite suppressor, combined with a low GI diet (some evidence it helps rats and children with epilepsy), led me dropping from 82kg to 77kg in a couple of months.

Another one (Keppra?) was doing well up until i saw a 3m tall amorphous black figure in the corner of the room, felt intense fear and woke up on back seat of our car at a hospital. Two Ti screws and a chunk of my hip required.

One thing I have learnt - you cannot trust your perceptions of reality.