The science of Waves

I'd love to know from someone with knowledge about how the brain heals in waves, how it gradually happens. I just need to make sense of it all so I can have some sense of relief. It all feels permanent.

 

I have yet to experience a window, I'm constantly in waves, the waves flatuates in intensity. I Still force myself to drive and do things but it's extremely difficult, words can't describe how delibetating doing simple tasks like paying for groceries at the market, using the swiping machine, drive throughs, holding an inteligible conversation on the fone. This very text I'm typing. It's very hard and just foreign, even eating is strange, Iv Been eating my whole life, how can that feel foreign, withdrawal is indeed some form of brain injury or damage. Right now I'm in the thick of it and it feels sooooo permanent. I need encouragement guys. 😩

I'm really sorry for the situation you are living. Here is a link with some scientific explanation of waves

 

http://www.benzobuddies.org/forum/index.php?topic=191083.0

 

Healing happens. It's a matter of time. But it's enormously inluenced by many things that had not so much influence on us when we were healthy: some foods, or vitamins, or fatigue, stress, psycological factors, and so on. It's crucial to discover some of these things that can temporarily put personal healing on holds, and considering that anyway healing takes time even if you act on some of these factors.

 

Good luck!

Thanks

I asked my neurologist who is very benzo wise  about this waves /windows pattern and he said that it's just conjecture that waves are the healing process, his opinion is that we are healing all the time, by healing he means growing new gaba receptors and rebalancing other neurotransmitters. He says what causes waves is excess glutamate that trickles out of the cells or comes in a storm (dependent on where we are in wd)    due to the injury from  bwd. Glutamate release is the normal response to any brain injury and in people who have normal gaba receptors gaba is utilised to put the brakes on it. With bwd our receptors aren't able to utilise enough gaba to do this job, they just do their best but it's not enough. After a while they are able mop up some of the extra cellular glutamate and we get a "window" but because we're still brain injured glutamate keeps trickling out until there is enough to bring on the sxs (a wave).

 

He believes that we are injured twice, the first injury is when we take the benzo and the second is when we stop. He says the point of tapering slowly is to reduce the amount of glutamate released because it's this glutamate that causes further damage. I'm not sure I've explained this as well as he did !!

 

Please note this is just me repeating what my health professional told me. It is not to be taken as anything other than that. I have no scientific research to back it up, it was purely a conversation..

I asked my neurologist who is very benzo wise  about this waves /windows pattern and he said that it's just conjecture that waves are the healing process, his opinion is that we are healing all the time, by healing he means growing new gaba receptors and rebalancing other neurotransmitters. He says what causes waves is excess glutamate that trickles out of the cells or comes in a storm (dependent on where we are in wd)    due to the injury from  bwd. Glutamate release is the normal response to any brain injury and in people who have normal gaba receptors gaba is utilised to put the brakes on it. With bwd our receptors aren't able to utilise enough gaba to do this job, they just do their best but it's not enough. After a while they are able mop up some of the extra cellular glutamate and we get a "window" but because we're still brain injured glutamate keeps trickling out until there is enough to bring on the sxs (a wave).

 

He believes that we are injured twice, the first injury is when we take the benzo and the second is when we stop. He says the point of tapering slowly is to reduce the amount of glutamate released because it's this glutamate that causes further damage. I'm not sure I've explained this as well as he did !!

 

Please note this is just me repeating what my health professional told me. It is not to be taken as anything other than that. I have no scientific research to back it up, it was purely a conversation..

 

southern star  I'm sorry you suffered a stroke from this but thank goodness you at least found a doctor who understands whats going on with you. Thank you for sharing this wisdom.

 

 

Thanks, it makes perfect sense to me... I'm sorry about your stroke... God I fear that.

Thx Sunlit, i know you're suffering greatly too,  I've actually had 2 strokes from bwd and both times the neurologists have documented it as being due to bwd. I honestly think i must've had a guardian angel looking out for me because i was so blessed to be validated. The current doc seems to be willing to talk in terms of benzos causing injury so I'll try and get more info from him and hopefully some pointers towards research to back it up. Maybe he'll take me on as a case study /research project LOL!!!

 

Liberty i know you're suffering greatly as well through this, i think you've created an interesting thread here. I hope others chime in.

I asked my neurologist who is very benzo wise  about this waves /windows pattern and he said that it's just conjecture that waves are the healing process, his opinion is that we are healing all the time, by healing he means growing new gaba receptors and rebalancing other neurotransmitters. He says what causes waves is excess glutamate that trickles out of the cells or comes in a storm (dependent on where we are in wd)    due to the injury from  bwd. Glutamate release is the normal response to any brain injury and in people who have normal gaba receptors gaba is utilised to put the brakes on it. With bwd our receptors aren't able to utilise enough gaba to do this job, they just do their best but it's not enough. After a while they are able mop up some of the extra cellular glutamate and we get a "window" but because we're still brain injured glutamate keeps trickling out until there is enough to bring on the sxs (a wave).

 

He believes that we are injured twice, the first injury is when we take the benzo and the second is when we stop. He says the point of tapering slowly is to reduce the amount of glutamate released because it's this glutamate that causes further damage. I'm not sure I've explained this as well as he did !!

 

Please note this is just me repeating what my health professional told me. It is not to be taken as anything other than that. I have no scientific research to back it up, it was purely a conversation..

 

I think your neurologist is spot on and you did a great job explaining it, I agree this is most likely what’s happening. For me, “waves” are just an exaggerated, prolonged stress response. What would usually be small, insignificant, non issues in life turn into tsunamis of chemical messaging because your brain’s brakes have been cut. This is good news, because it means you can help it along with all the things science shows lower normal stress response. Yoga, cardio, meditation, good diet, etc. But, mostly time.

I agree with southern star, I think we are injured physically twice, with the initial taking of the drugs and the withdrawal. But my guess is many/most of us are also dealing with a very singular form of PTSD. Even the healed. I believe that thinking about what we go through as an event that triggers a form of PTSD is a way to understand why most healed people go on and try to never think about this again. There are plenty of horrific things that happen to people where they live through it and go on to march in the streets. We don't do that. It's why we have no political organization that lobbies on our behalf. It's my belief that this forgetting after healing is a  major reason why this has gone on so long.  "Forgetting" about the worst thing that happened to you is not necessarily a sign of healing. I know that sounds absurd, but forgetting is also a sign of trauma. In this case, it may be a blessing, but it also makes us politically impotent.

 

It's all so complicated, and no one really knows; though I appreciate the way it's been discussed here. And Parker's explanation (that was linked to) has helped a lot of people; whether or not its true, it's a powerful story and stories are often more useful than "truth" (not to say it's not true, I have no idea).

 

I know we are all rightfully obsessed with GABA, and people who know much more about science than I do are convinced that that is the key (along with glutamate). But we are pre-Enlightenment about this stuff. It just has to be more complex than that, given the range of symptoms and responses. There's probably some kind of cascade of horrors that happens and gaba is a significant part of it. Again, I don't know, and I think it's helpful to use that as a guide when going through healing. But during research, I want people to be as open minded as possible. We're in the preclinical rat-model phase of research, and as Lapis2 is fond of saying, people are not rats.

 

But I am wary of grand theories ever since I was sold as a young person on the serotonin theory of depression. They messed a lot of people up with that one.

 

 

Thank your neurologist for me me Southern.  Yours was a great 'plain English' explanation.  Makes perfect sense now.  So wish I had studied neuroscience.  Fascinating stuff.  So much more to discover.

 

Also liked your post Quietquiet in our becoming politically impotent out of the "forgetting".  Benzo's are capable of screwing us in all ways possible.

 

I would so love to see us hit the streets limping, our Warrior flag held high.  🏁

 

Dee

 

 

I asked my neurologist who is very benzo wise  about this waves /windows pattern and he said that it's just conjecture that waves are the healing process, his opinion is that we are healing all the time, by healing he means growing new gaba receptors and rebalancing other neurotransmitters. He says what causes waves is excess glutamate that trickles out of the cells or comes in a storm (dependent on where we are in wd)    due to the injury from  bwd. Glutamate release is the normal response to any brain injury and in people who have normal gaba receptors gaba is utilised to put the brakes on it. With bwd our receptors aren't able to utilise enough gaba to do this job, they just do their best but it's not enough. After a while they are able mop up some of the extra cellular glutamate and we get a "window" but because we're still brain injured glutamate keeps trickling out until there is enough to bring on the sxs (a wave).

 

He believes that we are injured twice, the first injury is when we take the benzo and the second is when we stop. He says the point of tapering slowly is to reduce the amount of glutamate released because it's this glutamate that causes further damage. I'm not sure I've explained this as well as he did !!

 

Please note this is just me repeating what my health professional told me. It is not to be taken as anything other than that. I have no scientific research to back it up, it was purely a conversation..

 

Really interesting discussion here. Thank you

I agree with southern star, I think we are injured physically twice, with the initial taking of the drugs and the withdrawal. But my guess is many/most of us are also dealing with a very singular form of PTSD. Even the healed. I believe that thinking about what we go through as an event that triggers a form of PTSD is a way to understand why most healed people go on and try to never think about this again. There are plenty of horrific things that happen to people where they live through it and go on to march in the streets. We don't do that. It's why we have no political organization that lobbies on our behalf. It's my belief that this forgetting after healing is a  major reason why this has gone on so long.  "Forgetting" about the worst thing that happened to you is not necessarily a sign of healing. I know that sounds absurd, but forgetting is also a sign of trauma. In this case, it may be a blessing, but it also makes us politically impotent.

 

It's all so complicated, and no one really knows; though I appreciate the way it's been discussed here. And Parker's explanation (that was linked to) has helped a lot of people; whether or not its true, it's a powerful story and stories are often more useful than "truth" (not to say it's not true, I have no idea).

 

I know we are all rightfully obsessed with GABA, and people who know much more about science than I do are convinced that that is the key (along with glutamate). But we are pre-Enlightenment about this stuff. It just has to be more complex than that, given the range of symptoms and responses. There's probably some kind of cascade of horrors that happens and gaba is a significant part of it. Again, I don't know, and I think it's helpful to use that as a guide when going through healing. But during research, I want people to be as open minded as possible. We're in the preclinical rat-model phase of research, and as Lapis2 is fond of saying, people are not rats.

 

But I am wary of grand theories ever since I was sold as a young person on the serotonin theory of depression. They messed a lot of people up with that one.

 

I like your thinking

Southern star - what your doc said seems to be what is repeated here on BB, at least the buddies I ran into when I first joined. SG57 used to be big on here and used to say the same thing... and Bart. I agree we must be healing all the time, not just in waves. And the waves are a very exaggerated prolonged response to any little stress. Doesn’t take much really. Sometimes even playing a computer game too fast would set me off for a week long wave. And I agree, the normal things that help stress help in this- it’s just that we have to do them constantly 24/7 to keep that stress response squashed ... and well, it’s nearly impossible to do it 24/7- hence the waves. 

 

Your docto(s) is incredibly knowledgeable. Hopefully you’ve added them to the benzo wise doc list.

Does your doc give any info about other medicines to avoid during w/d? 

Does this mean that waves are actually wiping out progress? Does glutamate actually injure the newly recovered receptors, or just cause use to feel terrible? I would be interested in the neurologists thoughts? I think we are all limited in how much we can control those waves. I hope we don’t have to worry about controlling more than is possible. Espy

So if excess glutamate is continuously being generated, how can someone recover, if the glutamate is continuously damaging gaba receptors and brain functioning?

I agree with southern star, I think we are injured physically twice, with the initial taking of the drugs and the withdrawal. But my guess is many/most of us are also dealing with a very singular form of PTSD. Even the healed. I believe that thinking about what we go through as an event that triggers a form of PTSD is a way to understand why most healed people go on and try to never think about this again. There are plenty of horrific things that happen to people where they live through it and go on to march in the streets. We don't do that. It's why we have no political organization that lobbies on our behalf. It's my belief that this forgetting after healing is a  major reason why this has gone on so long.  "Forgetting" about the worst thing that happened to you is not necessarily a sign of healing. I know that sounds absurd, but forgetting is also a sign of trauma. In this case, it may be a blessing, but it also makes us politically impotent.

 

It's all so complicated, and no one really knows; though I appreciate the way it's been discussed here. And Parker's explanation (that was linked to) has helped a lot of people; whether or not its true, it's a powerful story and stories are often more useful than "truth" (not to say it's not true, I have no idea).

 

I know we are all rightfully obsessed with GABA, and people who know much more about science than I do are convinced that that is the key (along with glutamate). But we are pre-Enlightenment about this stuff. It just has to be more complex than that, given the range of symptoms and responses. There's probably some kind of cascade of horrors that happens and gaba is a significant part of it. Again, I don't know, and I think it's helpful to use that as a guide when going through healing. But during research, I want people to be as open minded as possible. We're in the preclinical rat-model phase of research, and as Lapis2 is fond of saying, people are not rats.

 

But I am wary of grand theories ever since I was sold as a young person on the serotonin theory of depression. They messed a lot of people up with that one.

 

I like your thinking

Just wanted to chime in here and approve this message.

I agree, we are all suffering from PTSD, some worse than others perhaps, and that may play a huge part in wanting to move on and forget. The human brain also tends to block out traumatic experiences for survival, and that plays another part.

Also, for me, my memory has been seriously damaged by benzos and especially during the "withdrawal" that I cannot even remember what I had for breakfast. I want to stay on here post-recovery but I feel I won't have much to contribute except hope which is huge (but not detail-oriented!)

But sign me up for marching in the streets before I forget!

 

It’s not just GABA and glutamate.

 

Definitely a cascading effect that puts everything out including hormones which are neurotransmitters as well.

I have found bacopa (in small amounts so far) very helpful.  It’s the only thing I have found that upregulates GABA and helps with the glutamate storm

 

https://www.ncbi.nlm.nih.gov/m/pubmed/18086456/

From what i understood glutamate isn't pouring out all the time, it goes out of the cells in response to a brain injury. In the non benzo injured the gaba receptors utilise gaba to put the brakes on it to prevent further damage. In a CT situation the glutamate is uncontrolled hence the horrific sxs. Bwd is a long period of injury so the glutamate keeps going out of the cells (a wave) until the receptors can utilise enough gaba to put a brake on (a window) but because the receptors  are not fully healed they can't put the brake on for too long. As they heal more the brakes get applied more hence the windows get longer.

 

Problems recur if we reinjure the receptors along the way eg by taking meds that inhibit gaba receptors (some ABs, otc meds, etc,) because glutamate is released as a result of that injury. Also, taking a benzo intermittently during wd would have the same effect due to reinjury. Of course this is a simplified version for a non neuro trained person because other neurotransmitters and hormones come into play but in his opinion that all happens post glutamate release. My doc is a "glutamate guy" because he is a stroke doc and strokes are pretty hefty brain injuries that cause mammoth glutamate storms. I'm seeing him because I've had 2 strokes due to bwd, the last one only 3 months ago and being in bwd as well got him talking about glutamate. I feel like I'm back in acute since the stroke which sort of makes sense given what he's saying.

 

Whether it's "true" who knows, he's doing research into it as it pertains to stroke but maybe i can persuade him to take on bwd as well! As for meds to avoid, i didn't ask him but he validated that a penicillin had reinjured me as it's a gaba receptor downregulator. I guess it's reasonable to extrapolate that any med that acts on gaba receptors, adrenaline, dopamine and serotonin might not be a good idea but that's just my surmising, no facts there.

Can you ask your Neuro about Oxalocetate - I believe there is evidence that given this post stroke or TBI can reduce damage.

I have found bacopa (in small amounts so far) very helpful.  It’s the only thing I have found that upregulates GABA and helps with the glutamate storm

 

https://www.ncbi.nlm.nih.gov/m/pubmed/18086456/

 

 

Did you get any side effects from it?

Like with everything I try it causesxmore vibrating and head whooshing etc.

No but like with all supplements I only take a fraction of a regular dosage to stay ahead of any negative effects.  I’m still at only a fraction of the recommended dose but have been taking it for many months.  I seem to notice only positive benefits from it.

What dose do you take?  I'm so sensitive to everything I'm scared to try anything but i know i can't live like this much longer.

I asked my neurologist who is very benzo wise  about this waves /windows pattern and he said that it's just conjecture that waves are the healing process, his opinion is that we are healing all the time, by healing he means growing new gaba receptors and rebalancing other neurotransmitters. He says what causes waves is excess glutamate that trickles out of the cells or comes in a storm (dependent on where we are in wd)    due to the injury from  bwd. Glutamate release is the normal response to any brain injury and in people who have normal gaba receptors gaba is utilised to put the brakes on it. With bwd our receptors aren't able to utilise enough gaba to do this job, they just do their best but it's not enough. After a while they are able mop up some of the extra cellular glutamate and we get a "window" but because we're still brain injured glutamate keeps trickling out until there is enough to bring on the sxs (a wave).

 

He believes that we are injured twice, the first injury is when we take the benzo and the second is when we stop. He says the point of tapering slowly is to reduce the amount of glutamate released because it's this glutamate that causes further damage. I'm not sure I've explained this as well as he did !!

 

Please note this is just me repeating what my health professional told me. It is not to be taken as anything other than that. I have no scientific research to back it up, it was purely a conversation..

 

That's an excellent explanation SS, I am going to copy and put on several threads where I know people will appreciate it.  They may miss it here and that would be a shame,  love you, don't forget to tell me about Dr, Mary 💜💜💜💜

Oh wow Mary, i hope i explained it ok! It hopefully generate some interesting discussion at least! I'll PM you soon.