12 years out and ongoing neurological issues

[[Ba...]]

Hello everyone. I’ve been off this site for many years but I’ve come back to see if anyone can help. 12 years ago I took the wrong dose of sleeping pills for two weeks which caused neurological issues when I am on the verge of sleep. (Random movement, itching, pulsations etc). I ended up doing a three year Valium taper. I’ve had periods where I feel fine although I am very sensitive to supplements. In the last 6 months my symptoms have flared again. Since I’ve been on this website (got off about 8 years ago) has anything been found that helps with long term healing of the gaba receptor sites? I am unaware of anything. I recently saw a sleep neurologist who gave me a standard insomnia protocol so I don’t think that the medical community will offer me much. Thanks for any help you may offer. 

[[je...]]

Hi @[Ba...]

Good to have you here again, but I'm sorry it's under these circumstances. I'm really sorry you're going through a flare up of symptoms. I hope our lovely long hauler community will be able to assist you.

[[Co...]]

Hello @[Ba...]. Welcome (and sorry to see you) back again.

7 hours ago, [[B...] said:

Since I’ve been on this website (got off about 8 years ago) has anything been found that helps with long term healing of the gaba receptor sites?

No major changes. Though, there is more research.

What was the medication (from 12 years ago) which caused you the sleep problems?

And, has there been any recent changes in your circumstances, medication, or lifestyle which might account for the uptick in symptoms?

[[Ba...]]

10 hours ago, [[j...] said:

Hi @[Ba...]

Good to have you here again, but I'm sorry it's under these circumstances. I'm really sorry you're going through a flare up of symptoms. I hope our lovely long hauler community will be able to assist you.

Thank you for your good wishes. 

[[Ba...]]

5 hours ago, [[C...] said:

Hello @[Ba...]. Welcome (and sorry to see you) back again.

No major changes. Though, there is more research.

What was the medication (from 12 years ago) which caused you the sleep problems?

And, has there been any recent changes in your circumstances, medication, or lifestyle which might account for the uptick in symptoms?

@[Co...] Thanks for your reply. I took the wrong dose of ambien and Lunesta for no more than two weeks but that was enough to do it. 

There really have been no major changes in my life. I’m thinking that it is due to aging (I’m almost 63) and that whatever ability the brain had to compensate for the damage may be waning.  I think there was two or three years in this period where as long as I didn’t take supplements I was fine. Unfortunately not any more. 
 

Can you point me to any research that might be helpful? I’m sorry to hear that there’s been no progress on actual healing treatments. 

[[Co...]]

27 minutes ago, [[B...] said:

@[Co...] Thanks for your reply. I took the wrong dose of ambien and Lunesta for no more than two weeks but that was enough to do it.

There really have been no major changes in my life. I’m thinking that it is due to aging (I’m almost 63) and that whatever ability the brain had to compensate for the damage may be waning.  I think there was two or three years in this period where as long as I didn’t take supplements I was fine. Unfortunately not any more.

Well, maybe other members can help you work it out

27 minutes ago, [[B...] said:

Can you point me to any research that might be helpful? I’m sorry to hear that there’s been no progress on actual healing treatments. 

Nothing I can really point you too. But there is research being carried out. @[Li...] might be able to point you to something.

[[Ba...]]

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

Well, maybe other members can help you work it out

Nothing I can really point you too. But there is research being carried out. @[Li...] might be able to point you to something.

@[Co...] OK. Thanks very much for your help. 

[[Co...]]

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

Well, maybe other members can help you work it out

I'm not sure how the above reads to you, but I just mean that nothing immediately springs to mind for me. Sometimes, there is an uptick in problems and with no discernible cause. But other members might have some ideas.

7 minutes ago, [[B...] said:

@[Co...] OK. Thanks very much for your help. 

You are welcome.

[[Ba...]]

13 hours ago, [[j...] said:

Hi @[Ba...]

Good to have you here again, but I'm sorry it's under these circumstances. I'm really sorry you're going through a flare up of symptoms. I hope our lovely long hauler community will be able to assist you.

@[je...]thank you for your good wishes. 

[[Li...]]

Hello @[Ba...].

Although I would be delighted to learn otherwise, my current understanding is that “the science is still out”  as to why symptoms can persist for so long after a benzodiazepine is discontinued in some individuals.

One hypothesis is that benzodiazepines change GABA receptors in some way - perhaps reducing them in number, perhaps altering or damaging them.  We don’t really know.

What we do know is that psychiatric drugs, including benzodiazepines, are non-specific.  Although they are designed to have certain binding preferences, they affect more receptors and neurotransmitters than just the primary targets (e.g. GABA receptors and GABA in the case of benzodiazepines).  Consequently, when a psychiatric drug is removed, this entire system of receptors and neurotransmitters must return to its original (pre-drug) homeostatic set point.   This may explain in part why it can take such a long time to reverse whatever it is that benzodiazepines do.

The research I’m tracking is focused on interventions to help individuals reduce or stop benzodiazepines safely.  So I’ll defer to others (looking to you @[Na...]) about the current state of research related specifically to GABA receptors. 

[[Ba...]]

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

I'm not sure how the above reads to you, but I just mean that nothing immediately springs to mind for me. Sometimes, there is an uptick in problems and with no discernible cause. But other members might have some ideas.

You are welcome.

@[Co...]yes I understood where you were coming from. Thanks for reaching out to others who might have some ideas. I appreciate it. 

[[Ba...]]

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

Hello @[Ba...].

Although I would be delighted to learn otherwise, my current understanding is that “the science is still out”  as to why symptoms can persist for so long after a benzodiazepine is discontinued in some individuals.

One hypothesis is that benzodiazepines change GABA receptors in some way - perhaps reducing them in number, perhaps altering or damaging them.  We don’t really know.

What we do know is that psychiatric drugs, including benzodiazepines, are non-specific.  Although they are designed to have certain binding preferences, they affect more receptors and neurotransmitters than just the primary targets (e.g. GABA receptors and GABA in the case of benzodiazepines).  Consequently, when a psychiatric drug is removed, this entire system of receptors and neurotransmitters must return to its original (pre-drug) homeostatic set point.   This may explain in part why it can take such a long time to reverse whatever it is that benzodiazepines do.

The research I’m tracking is focused on interventions to help individuals reduce or stop benzodiazepines safely.  So I’ll defer to others (here’s looking at you @[Na...]) about the current state of research related specifically to GABA receptors. 

@[Li...]Thank you very much for this information. I wasn’t aware of the non-specific nature of the drugs. While it doesn’t change my situation it does help to understand why the healing is taking so long and why I may not ever fully heal. Hopefully this will be figured out in my lifetime….

[[mo...]]

I just feel like my GABA receptors are just asleep since I used benzos (as prescribed) to constantly shut them up for decades. I'm in big trouble...

[[De...]]

You have consequences from the whole thing done to the conformation of this receptors, like auto-immunity and neuroinflammation 

 

 

You can check the role of meloxicam in auto-immune reactions in the brain, you could also check about intransal insulin and 9mebc being an inverse agonist of this receptors

 

Also there is vorinostrat as an HDAC that affect this receptors

 

And there is a role of some proteín kinases to translate the receptor subunits trough Cell membranes, you can Learn about this studying about apremilast modulating the phosphorylation of gabaergic receptors 

Searching each Topic on google you will find information 

 

 

Edited January 29 by [De...]

[[Ba...]]

Thanks to everyone who replied here. I figured out what was triggering the symptoms and I’ve now had two nights of sleep with no problems. I have been on progesterone for many years with no problems so when my nurse practitioner told me to take another 100mg every few nights it didn’t occur to be that this could be problematic. I now think that the varying levels were causing a “withdrawal” type reaction as progesterone acts on the gaba receptor. I stopped taking the extra 100 mg and after a few days the severe symptoms stopped. The last piece was this week after I took a multi-vitamin that I was taking every other day. After I took it I realized that it had both vitamin d and b6 which are also potentially problematic. Well that was the last night that I had symptoms. I put all this together after finding this list online. From now on I will refer to this list before taking anything and I asked my GP to put it in my chart. It’s so hard to be my own medical detective! I’m thankful to the group that put this list together! All the best to everyone! 
https://www.benzoinfo.com/medications-and-supplements/#supplements

[[Co...]]

It is good to hear that you tracked down the likely culprit, @[Ba...].

[[Sc...]]

You took valium for only 2 weeks and tapered for 3 years?. Why would you prolong the time to taper a 2 week dose for 3 years?, this will cause more harm. It could have been done in a few months. There is nothing that i know that speeds healing only looking after ones health and time.

[[Ba...]]

30 minutes ago, [[S...] said:

You took valium for only 2 weeks and tapered for 3 years?. Why would you prolong the time to taper a 2 week dose for 3 years?, this will cause more harm. It could have been done in a few months. There is nothing that i know that speeds healing only looking after ones health and time.

@[Sc...]no I took the wrong dose of ambien and Lunesta for 2 weeks and had to cross to 5mg Valium. It took 3 years to taper. I had severe withdrawal symptoms with every cut. Believe me I had no desire to drag it out. 

[[Ba...]]

5 hours ago, [[C...] said:

It is good to hear that you tracked down the likely culprit, @[Ba...].

Thanks so much and thanks for your help. 

[[Pa...]]

Anyone dealing with depression and anxiety issues that were never there before benzos?

[[Ne...]]

3 hours ago, [[P...] said:

Anyone dealing with depression and anxiety issues that were never there before benzos?

I never had any anxiety prior to Benzos.  And never had this severe depression where I can't feel joy and pleasure and have to force feed.  Being short term on benzos less than six months including tapering is just so unreal.  The torture both mental and physical I have endured the last 9 years is inhumane.  My windows are always short lived compared to the months of torture.

[[Pa...]]

3 hours ago, [[N...] said:

I never had any anxiety prior to Benzos.  And never had this severe depression where I can't feel joy and pleasure and have to force feed.  Being short term on benzos less than six months including tapering is just so unreal.  The torture both mental and physical I have endured the last 9 years is inhumane.  My windows are always short lived compared to the months of torture.

Thanks for your response, it sounds so famaliar, do you have pain or aches like arthritis?  Sometimes I feel so forgetful do you have that also?

[[Ne...]]

I would say the normal aches and pain for a 70 year old.  I'm young at heart and use to hike 5 miles a day after work prior to benzos and I, also, eat very pure.  I'm not really forgetful.  But I do write notes to remind me of errands.  I have forced myself to go to work all these years even during tapering.  I think that helped my cognitive where I didn't suffer very much.  The mental torture is my worst symptom.

[[Pa...]]

On 08/02/2024 at 18:05, [[N...] said:

I would say the normal aches and pain for a 70 year old.  I'm young at heart and use to hike 5 miles a day after work prior to benzos and I, also, eat very pure.  I'm not really forgetful.  But I do write notes to remind me of errands.  I have forced myself to go to work all these years even during tapering.  I think that helped my cognitive where I didn't suffer very much.  The mental torture is my worst symptom.

Its chicken or egg, the mental causes the physical or vice versa