Is it okay to take rescue dose once a month?

[[Ma...]]

Hi!

I‘m in a really bad condition. I’m not able to walk and talk anymore. I have very strong speech issues and my husband doesn’t understand the strange words coming out my mouth. Total neurological breakdown. So I have to write down something to communicate with him. But sometimes even writing is not possible. Today in the morning I woke up in delirium.
 

I‘m on 8,5 mg Valium right now. Is it ok to take a rescue dose of 0,5 mg Ativan once per month to be able to wash myself once a month and to be able to walk a few steps?

Or would it mess me up?

[[Pa...]]

I don’t know how taking extra will effect your taper but we all have to do what we need to survive.  Have you tried taking a .5 mg dose, does it help you do what you need to do? 

[[Ma...]]

Yes, I already tried and was able to wash myself and I was able to walk again. Speech came also back.

[[...]]

@[Ma...] - I am so sorry that you are going through this. I can't really comment on what to do about taking rescue doses, but I can share a couple things that have really helped me when I tapered too quickly and crashed and couldn't stabilize. 

First, GABA, the pure amino acid supplement powder. Benzos make our GABA receptors lazy and die off. So until they wake up or we grow new ones, we're GABA-deficient while going through withdrawal. The amino acid GABA doesn't down-regulate receptors the way that GABA-binding drugs do. I've taken as much as 1/8 teaspoon 4x/day and as little as 1/32 teaspoon 1x/day. I only take as much as I need to get stable and then wait until I need less and less and then go to the next dose reduction. 

Second, BPC-157. It's a peptide that is sold as a supplement in the US. I've posted about it elsewhere, but it got me from not being able to eat to being able to eat. Also from not being able to stand or walk to being able to stand and walk. I've posted a bit about it here. If you do a search on "BPC-157" you'll find out more. 

I've also been told by others that instead of doing rescue benzo doses, that rescue doses of pregabalin or gabapentin might be safer, but I haven't tried that because of how helpful BPC and GABA have been. 

I was also at the end of my rope, back in the summer of 2021. I'm now down to 1.5 mg of Valium and am able to walk more and do more. It was just awful getting here. Especially when I got stuck at 3mg. I'm trying to pace myself better to get off these stupid drugs completely. 

Sending positive healing thoughts your way. <3

[[Si...]]

Hi, does increasing valium have the same effect as adding the ativan? Or does it mean you should cross over from valium to Ativan? If the Ativan helps you then maybe there is a route to stability?  Do you respond better to the Ativan than to valium

[[Al...]]

@[Ma...] @[...] what do you guys mean when say: "I was not able to walk or talk " ? Is it due to lack of strength? Weakness in muscles? I am asking because I had it for a while. And I thought it could be a disease.

[[...]]

@[Al...] - For me, it was the I had developed Postural Orthostatic Tachycardia Syndrome (POTS) as a result of having long covid. It's pretty common. Benzos are very effective at helping to treat POTS. They also help to treat mast cell activation syndrome (MCAS), which can cause POTS to flare. MCAS and histamine intolerance is also highly associated with long covid. Basically, I would get extreme blood pooling in my feet and tachycardia. So I only could to very short amounts of time standing or walking before it became too difficult. My head was also spinning, at times, so that made it hard, too. And lots of fatigue, especially in 2020 and 2021.

POTS is caused by autoantibodies. With each dose reduction of my Valium, it feels as if my body is making and then clearing the POTS-causing autoantibodies. (We make and clear autoantibodies all the time, but I can't say for certain this is what is going on with me, as it is difficult and expensive to test as a response. It just feels like that). I wish someone would do a clinical study of these autoantibody levels as people try to taper benzos. It would create an entirely new understanding of why benzo tapering makes us so sick! 

But I guess I should also note that I tapered benzos twice before with no issues, so I think the issue was that my covid infection made me susceptible to POTS and then even though it felt like I was recovering from long covid, I still had to taper my benzo, and that, I believe is causing long covid POTS rebounds. If that makes sense. 

Can you also share what your inability to walk felt like? 

[[Co...]]

[[Al...]]

I can't take long walks, I can't stand for long. Even taking a shower, which takes 15 minutes, is difficult. My leg burns a lot and even turns red, I start to sweat cold, and the sensation I have is that there is a lack of blood in my head. It feels like I'm going to faint, my thoughts get confused.
I never had covid. They suspected that I might have myasthenia gravis, nothing. I've read about POts but never mentioned it to the doctors, because I've always been treated as a case of anxiety, they don't take me seriously. However I told them all these symptoms.

Who diagnosed you? And what exam did you take? I think there is not an especific one, right? 

[[...]]

@[Al...] - Many docs don't know about POTS, but what you are describing are exactly the symptoms. Even if you never had a symptomatic case of covid, the long covid (LC) clinics have the docs that know that most about POTS at this point. So if you can somehow get into a LC clinic, they would be able to help diagnose you with POTS and then get you treatment for that, if appropriate. There are treatments! You are not crazy! It's the docs who have no clue. But now, since the pandemic, more and more docs now understand POTS, as there are so many new cases now. I hope you're able to get some answers soon. 

[[Al...]]

@[...] sorry to ask, what is a LC clinic? Moreover, now that you know you have pots, how do you cope with it? Is it under control now?

[[Li...]]

@[Ma...] I lost the ability to talk properly at 9 days OFF valium.  I'm now over 6 weeks off and my speech is better but I still have a "pause" type of stutter.  If I close my eyes to wet my hair in the shower, I lose my balance too.  This has been the most terrifying experience of my life to date.  I wish there was some kind of magic pill to instantly cure my CNS but time is the only answer.  I hope we all make a full recovery 🙏❤️🙏

[[PE...]]

[[aq...]]

@Kats Where did you get your BPC157 from?

[[fe...]]

@[aq...] Kats was kind enough to share in a different thread. https://infiniwell.com/collections/frontpage/products/bpc-157
 

This is the thread if you want to check out the post. I had found it very informative.

 

[[fe...]]

On 09/12/2023 at 13:11, [[A...] said:

@[...] sorry to ask, what is a LC clinic? Moreover, now that you know you have pots, how do you cope with it? Is it under control now?

@[Al...] LC= Long Covid. It's a quick reference to long covid clinics

[[dj...]]

On 10/12/2023 at 06:57, [[n...] said:

I tried GABA in both small and large doses and it had zero effect on me.

Google GABA and blood barier if you like to read the medical stuff.

I had a very strong, negative reaction to GABA supplements.  However, I could take Gabapentin, which is a GABA analogue, just fine.  Go figure.  
 

Always a roll of the dice with supplements.  Magnesium made me feel terrible too. 

[[or...]]

On 09/12/2023 at 07:55, [[M...] said:

Hi!

I‘m in a really bad condition. I’m not able to walk and talk anymore. I have very strong speech issues and my husband doesn’t understand the strange words coming out my mouth. Total neurological breakdown. So I have to write down something to communicate with him. But sometimes even writing is not possible. Today in the morning I woke up in delirium.
 

I‘m on 8,5 mg Valium right now. Is it ok to take a rescue dose of 0,5 mg Ativan once per month to be able to wash myself once a month and to be able to walk a few steps?

Or would it mess me up?

I get what I've decided is Aphasia, but it is a mild form at least, and only comes with a migraine with all the other things that accompany my type of migraine.  I speak gibberish, and can't read or write. To me that's totally my brain, and I fully believe that will get better, especially the migraine issue.

I don't know your history of taper, or cold turkey yet so I will look and see if you've added it in your profile.

I do know something about doing rescue doses, and I have done 3, which I did at the same dose I was at, not more, not less, and mine were for insomnia.  I learned they can help me, but everyone is different.  I also felt worse a time or two and decided that wasn't an option for me.  I'm not saying I wouldn't do it again, but it's my goal to stay on target.

I don't know how you feel, so only you can decide what to do, or if you are lucky enough to know a doctor that truly understand wd sxs, you can always ask them.  I wouldn't go on a regular schedule to rescue dose because for me it's been better to ride out any wd sxs I can handle, in order to stablilize on the new, lower dose.  Once I do that, I can taper another % which is how I do my taper, oregonlady, sending hope, and encouragement PS Here's my taper history if you are interested, or able to take a look:

https://benzobuddies.org/profile/243292-[or...]/?tab=field_core_pfield_34

[[wi...]]

Bad reactions for me too with GABA and every kind of magnesium.

I used to take gabapentin also but after tapering it and going through bad withdrawal, I’m hesitant to take it again for lots of reasons.

 

[[VI...]]

YES. IN MY OPINION, it is okay. I've used rescue doses successfully before for various reasons and with success, but it takes a LOT of discipline. and you cannot use them often. 

2 hours ago, [[w...] said:

Bad reactions for me too with GABA and every kind of magnesium.

I used to take gabapentin also but after tapering it and going through bad withdrawal, I’m hesitant to take it again for lots of reasons.

Very interesting. I've been on gabapentin before a few times. out of treatment-centers. They love to put you on it in there and send you out on it. In cali I specifically remember they had me at like 2400mg a day. I clearly remember having to taper that as well to get off it, but it wasn't a hard taper for me, though I do remember it being a very 'shaky' taper as in literally shaking, no seizure though. I spent my time slapped up on energy drinks and the beach to get through it. Some of us are very very sensitive to different things for sure. 

Edited January 12 by [VI...]
mispelling.

[[ve...]]

15 hours ago, [[d...] said:

I had a very strong, negative reaction to GABA supplements.  However, I could take Gabapentin, which is a GABA analogue, just fine.  Go figure.  
 

Always a roll of the dice with supplements.  Magnesium made me feel terrible too. 

I had a negative reaction to GABA supplements too in the form of tingling in my legs.  We have lots of GABA receptors in our body, but the ones that matter for benzos are the GABA-a receptors in the brain, and these supplements don't cross the blood-brain barrier at all.  So these supplements are a waste of money at best, and I don't think how it can be useful as placebo, but everyone's different.

Magnesium is another story.  Magnesium is vital to our mind and body and it's easy to be deficient if we're not careful with what we eat.  The flouride in water prevents absorption of magnesium.  The fluoride in toothpaste is ok but I avoid fluoridized salt. 

The real problem with magnesium is that the excess is felt in the gut... With supplements we shouldn't take the whole pill at once, but split it into 2 and skip doses when eating magnesium rich foods.  It shouldn't be taken on an empty stomach.  Also, not all magnesium salts were created equal.  Some are better absorbed but they're not always available at the pharmacy.

 

[[PE...]]

15 hours ago, [[d...] said:

I had a very strong, negative reaction to GABA supplements.  However, I could take Gabapentin, which is a GABA analogue, just fine.  Go figure.  
 

Always a roll of the dice with supplements.  Magnesium made me feel terrible too. 

Yeah you're right. It's just making me kind of angry when ppl try making money on stuff that don't have an effect. 

Magnesium can be good but it's once again relly personal.

[[PE...]]

21 hours ago, [[d...] said:

I had a very strong, negative reaction to GABA supplements.  However, I could take Gabapentin, which is a GABA analogue, just fine.  Go figure.  
 

Always a roll of the dice with supplements.  Magnesium made me feel terrible too. 

Did you got problem breathing? I was when taking 5g of the stuff.

Very nasty