The science of Waves

[[Ma...]]

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

 

It already has 

[Guest [so...]]

It's only one neurologists musings but it sure beat being told bwd doesn't exist beyond 4 weeks!

[[Ma...]]

It's only one neurologists musings but it sure beat being told bwd doesn't exist beyond 4 weeks!

 

One of my friends is taking copy to her Dr, who is totally not benzo wise to help him understand.  Others have posted saying they have read it twice.  It will get a lot of attention over next couple of days.  Most of us have Dr's that know so little.  I am really happy you have a good one 

[Guest [so...]]

Just a complete lucky strike with him, i was ready to be defensive as usual but not needed. Perhaps the fact that he is doing research makes him more open to discussion, i hope he sticks around! Now if only i could convince the new cardiologist...... He thinks there's no such thing as bwd after 3 months, despite the documentation from the hospital Dr. I must get my magic wand powered up more, i want to be transported to a place where no docs exist bcuz they're not needed!

 

I keep daydreaming about working as his research assistant and finding the answer to this horror story but i don't think my previous career as a classical singer would fit his requirements!! So I'll just keep on rowing in the boat we're all in. One day we'll reach the shore. Love to everybody struggling x

[[Ma...]]

Just a complete lucky strike with him, i was ready to be defensive as usual but not needed. Perhaps the fact that he is doing research makes him more open to discussion, i hope he sticks around! Now if only i could convince the new cardiologist...... He thinks there's no such thing as bwd after 3 months, despite the documentation from the hospital Dr. I must get my magic wand powered up more, i want to be transported to a place where no docs exist bcuz they're not needed!

 

I keep daydreaming about working as his research assistant and finding the answer to this horror story but i don't think my previous career as a classical singer would fit his requirements!! So I'll just keep on rowing in the boat we're all in. One day we'll reach the shore. Love to everybody struggling x

 

You have the motivation to learn though, maybe not the background.  :smitten:  it will be one of us though, probably a younger one of us, that has the time ahead of them.

[Guest [so...]]

My husband just made me laugh, he said we already have the answer to this horror story, "just stop these effing Dr's from prescribing these effing poisons ", I've missed the boat with that one but it's good to have him on my team at last!

Now I've got that Monkees song "I'm a Believer " looping in my head!

[[Ma...]]

My husband just made me laugh, he said we already have the answer to this horror story, "just stop these effing Dr's from prescribing these effing poisons ", I've missed the boat with that one but it's good to have him on my team at last!

Now I've got that Monkees song "I'm a Believer " looping in my head!

 

I loved the Monkees 

[Guest [Ho...]]

Are the windows as good as it gets? Or is it even better once you heal?

[Guest [so...]]

Going by this theory i think that the more the brain heals the more the healed receptors can mop up the glutamate and as the brain injury heals less is able to leak into the extracellular spaces, so windows Will get longer and longer and normality comes back.

[[va...]]

Following

[[Ti...]]

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..

 

 

This is good, and from a neurologist too, not a clueless psychiatrist. Thanks for sharing. It must be very reassuring, but doesn’t make this go away. I don’t get windows, but get more intense waves.  I know many who don’t get windows too, it’s disheartening when others talk of them, but I’ve been told by various sources that healing is still going on and can happen quite rapidly in these cases 🙏🙏. It would be much easier if we all followed a pattern and timeline. 

[[va...]]

Time heals, I hope you're right because I get very few windows and very short ones too. What has improved with my updose and long hold is the severity of my symptoms and the intensity of the waves. But they're still pretty intense and there are very few moments I could really call a window. Are you sure we're still healing. The only advantage of this is that the stresssors in life don't throw me off the cliff as much as they used to, because I'm living in a permanent "about to go off the cliff state" so external stresssors don't make such a difference as they used to, if that makes sense.

[[...]]

Southern star- sorry to inundate you with your questions. But sounds like you have one of the most knowledgeable docs of buddies on here. Would live any other info he knows. Like is there anything besides time that can help us? Or whatever else he knows. I guess we are all thirsty for knowledge and answers and anything that can provide any relief. Thank you again for sharing.

[[Pt...]]

 

 

i can relate and could have written your post word for word, excpet i am not as functional as you and cannot drive/work/do anything for survival. i have never had a window. it seriosly feels like permanent brain damage. my brain cannot handle doing the smallest things, including picking out a piece of clothing to wear. it's too much. i cannot do it. i cannot walk outside. it's been 7 months. i also need encouragement from others.

[[es...]]

I can tell you that you aren’t alone. I tapered and am exactly where you are at beginning of fifth month out. Seems par for the course. But, it sucks. Espy

[Guest [so...]]

Libr I don't see my neurologist for a few weeks but I'll go with a shopping list! Seriously though he is treating me because I've had 2 strokes, both caused by bwd  and that's how we got talking about it. I can't imagine he'll give me the silver bullet, LOL.! He seems to think that not reinjuring the receptors is the absolute  key to healing and that very slow tapers are the way to go  because he believes glutamate storms cause more damage. He's not in favour of adjunct meds that hit the gaba receptors because that's reinjuring them. I mean at the end of the day i think he obviously knows more from a Neuroscience perspective but he doesn't know how to "cure" our plight any more than we do. He did say that benzos should only be given as a treatment for grand mal seizures in the ER but that doesn't help us either. I'll keep phishing and report back!

[[va...]]

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

 

Of course I'm no doctor, but there are many people here who've finally healed even after horrendous cold turkeys, so maybe the waves aren't helping but most people seem to heal in spite of it. I want to believe it for my own sake too.

[Guest [so...]]

Espy, his theory, which is based on the  excessive glutamate release after brain injury, is that the wave is a constant undercurrent, it's gabas job to mediate the glutamate so when the receptors are healed enough to utilise gaba they mop up the glutamate best they can at the time and that's what produces the window, but the glutamate is still trickling or storming due to the original injury (bwd) and dependent on the degree of healing of the gaba receptors  so the window closes until they are healed enough to keep glutamate under control . His theory just pertains to this aspect of bwd, of course there is a lot more going on but he says that in any brain injury glutamate is the damaging force and the driver for the cascade of other neurotransmitter involvement. But this is only one neurologists theory, there's lots of others. I've never believed the "waves are evidence of healing" stuff as there is absolutely no science to back it up. At least his theory is based on evidence from other brain injury, but at the end of the day we all still battle on the best we can. He did make it very clear that damage from bwd does heal significantly given time (based on the model of neurogenesis that occurs in strokes as long as the receptors don't get reinjured, so I'm going to be hopeful that I'll heal eventually.

[[Ag...]]

 

 

i can relate and could have written your post word for word, excpet i am not as functional as you and cannot drive/work/do anything for survival. i have never had a window. it seriosly feels like permanent brain damage. my brain cannot handle doing the smallest things, including picking out a piece of clothing to wear. it's too much. i cannot do it. i cannot walk outside. it's been 7 months. i also need encouragement from others.

 

I can relate to your need for encouragement from others, and I would just like to say that when I read what you have written and what you are having to deal with (which I relate to), it appears to me that you are, in the most difficult of circumstances, exhibiting a kind of courage and tenacity that some of y/our symptoms belie.  Your courage encourages me.  I encourage you in return.

[[Ma...]]

 

 

i can relate and could have written your post word for word, excpet i am not as functional as you and cannot drive/work/do anything for survival. i have never had a window. it seriosly feels like permanent brain damage. my brain cannot handle doing the smallest things, including picking out a piece of clothing to wear. it's too much. i cannot do it. i cannot walk outside. it's been 7 months. i also need encouragement from others.

 

I can relate to your need for encouragement from others, and I would just like to say that when I read what you have written and what you are having to deal with (which I relate to), it appears to me that you are, in the most difficult of circumstances, exhibiting a kind of courage and tenacity that some of y/our symptoms belie.  Your courage encourages me.  I encourage you in return.

 

She is an amazing woman Agentic, she inspires us all.  .  Mary

[[Pt...]]

thank u for the kind words agentic. it means so much to me.

[[...]]

Thanks SS- and for the added reassurance that time heals us. Can’t hear that enough.

I’m sure he doesn’t have a magic bullet but any info and reassurance is helpful. Even if we’ve heard it before. Thanks.

[[bo...]]

What if you don't really get windows at all? I might get one a month for like an hour or two before bed.

[[va...]]

Southern Star, I've translated your explanations to Spanish and have printed them. I'll take them to my psychiatrist on Tuesday (he follows up with me once a month). I hope he doesn't drop me for this ofens of bringing up another doctor's theory, but I guess I'll take the risk. I'll produce the paper very humbly, telling that I feel better understanding how things work.

 

 

[Guest [so...]]

Remember it's just a theory, it's not proven with any scientific research, but hopefully your psychiatrist will be open to discussion. Are you in Spain?  I'm in Australia but my neurologist is Spanish! I have no answer to the no windows question Boom, perhaps it means that the receptors aren't healed enough yet, idk. When i told him I'd had severe dp/dr and horrible intrusive thoughts and scary stuff he said it was caused by excess glutamate that was released when the stroke happened. That's how we got talking about it all. He also said there is research linking glutamate with anxiety. I know that NAC is supposed to help with glutamate but I'm too scared to take it.