What is happening in your brain? by Parker

Thank you for sharing. It is helpful for me to have a vague understanding of some of the events in my brain and what is causing them.

easier to destroy than to build

Amazing post. Thanks for affirming the process is a positive one.  Takes the scare out of scary.  One of the 'tricks' I use when things get rough is to tell myself that whatever creepy thing is happening, no matter how bad, is a healingresponse.  I welcome it (sometimes) because I believe they are a good sign, especially since tapered down by 90% now.  You are awesome.  And it gives me hope I will someday find my car keys, glasses and checkbook : )  Just kidding.  Only the checkbook is missing 

 

that's very empowering!

Supplemental GABA cannot cross the blood brain barrier. A lot of people say no to it but there are a lot of us who take CALM- and I am one of them. It seems to really help with muscular symptoms for me, as well as anxiety. If it helps you, it should be safe, although no one can recommend anything or give direct advice on BB. But a lot of us have taken it with great results.

 

Could you let me know what the manufacturers are? I looked on Amazon and there is too much to figure out. Thank you!

 

Lauren

Supplemental GABA cannot cross the blood brain barrier. A lot of people say no to it but there are a lot of us who take CALM- and I am one of them. It seems to really help with muscular symptoms for me, as well as anxiety. If it helps you, it should be safe, although no one can recommend anything or give direct advice on BB. But a lot of us have taken it with great results.

 

Could you let me know what the manufacturers are? I looked on Amazon and there is too much to figure out. Thank you!

 

Lauren

 

Lauren,

 

I know you are desperate but be careful about magic cures. If they existed we would all be on them. Speak to your doctor first please.

 

G

This is great info, thanks for posting it.

thank you Parker for the post and all the great info. I am new to BB and this info is exactly what I have been searching for. Really gives me hope and helps me understand what I am going through and to have a different perspective of it.  I make plans when I am having a window only to cancel those plans when a wave comes. Has been getting expensive with cancel fees, etc. but that's just the way it is right now.  After reading your post, I feel I am further in my recovery than I thought, so thank you!

thank you Parker for the post and all the great info. I am new to BB and this info is exactly what I have been searching for. Really gives me hope and helps me understand what I am going through and to have a different perspective of it.  I make plans when I am having a window only to cancel those plans when a wave comes. Has been getting expensive with cancel fees, etc. but that's just the way it is right now.  After reading your post, I feel I am further in my recovery than I thought, so thank you!

 

Have a read of ‘The Four Phases’ as well

Hello, I am about 5 months off of benzos and zopiclone. I went in the hospital with heart pains after a 10k training run and was given a beta blocker, then a benzo and Zopiclone when I developed sleeping issues, something I had never experienced before. Now 5 months off of everything I am worse than ever. I can't speak properly, my memory is very poor, though I had been very cognitively sharp prior to this. I have difficulty walking, need help going to the store, I need assistance using the automated checkout machines, etc. Like you mentioned, I often can't recall the name of the current president, or what I did moments earlier. Trying to form thoughts is very difficult. I thought by this time (5 months) I would have seen some progress. Everything is distorted and feels surreal. I would like to ask, were you this bad, and do you think this is permanent brain damage or recoverable?

 

Kind regards. TW

Hello, I am about 5 months off of benzos and zopiclone. I went in the hospital with heart pains after a 10k training run and was given a beta blocker, then a benzo and Zopiclone when I developed sleeping issues, something I had never experienced before. Now 5 months off of everything I am worse than ever. I can't speak properly, my memory is very poor, though I had been very cognitively sharp prior to this. I have difficulty walking, need help going to the store, I need assistance using the automated checkout machines, etc. Like you mentioned, I often can't recall the name of the current president, or what I did moments earlier. Trying to form thoughts is very difficult. I thought by this time (5 months) I would have seen some progress. Everything is distorted and feels surreal. I would like to ask, were you this bad, and do you think this is permanent brain damage or recoverable?

 

Kind regards. TW

 

Hi Tony,

 

I don't think Parker who wrote this is a member anymore, so won't reply. What you are describing is very common and will improve with time, unfortunately it takes much longer than any of us would like BUT it will get better and NOT permanent. We just have to ride it out the best we can.

 

Thanks for this, very interesting.

 

I'm going to buy supplement to help in recovery, can anyone recommend the best ones. I am willing to pay anything for an easier recovery that won't affect my business life.

Thanks for this, very interesting.

 

I'm going to buy supplement to help in recovery, can anyone recommend the best ones. I am willing to pay anything for an easier recovery that won't affect my business life.

 

Members have tried hundreds of supplements and spent thousands of dollars and there is no clear consensus about what helps, they hurt some, help others and many feel nothing.  Be wary, do your homework and only try one new thing at a time.  Alternative Therapies & Supplements

Thanks for this, very interesting.

 

I'm going to buy supplement to help in recovery, can anyone recommend the best ones. I am willing to pay anything for an easier recovery that won't affect my business life.

 

Members have tried hundreds of supplements and spent thousands of dollars and there is no clear consensus about what helps, they hurt some, help others and many feel nothing.  Be wary, do your homework and only try one new thing at a time.  Alternative Therapies & Supplements

 

Wise advice, thanks

Thank you so much for this. It is very helpful and encouraging.

Thank you for the information , i have been free of Benzos Xanax and so on now for about 5-6 months I am grateful to be here , the dizzy feeling and overall memory issues i do not enjoy , but hey at least now i am conscious of it and not subdued by the drug .. dizziness, hot flashes , with cold too , to memory issues are welcomed after what i have been thru . glad to be on the other side and reminded it is my new normal for now thankfully im sleeping good and smiling  .. your list and explanations clearly make sense . you know it is good to feel things and decide what to do , than not ..

 

thank you again , Shanie 

GODSGIRL,  Hope to find that your doing so much better?

Just read this post and strings after tapering off both Prozac 20 mg and clonazepam 1 mg (over 14 years of use for PTSD).  My taper of Prozac was first and difficult but without incident.  My taper off clonazepam was much longer and with many unpleasant side effects which appeared to subside until I had knee surgery 8/30/21.

 

Within a week of surgery I experienced allodynia (sensitivity to touch of skin in the leg of surgery).  This was not new to me as I experienced the same 4 years earlier when I initially broke the leg.

 

Within days of the allodynia the pain began to spread to my buttock, groin, left side of my trunk and stomach.  I was sent for stroke protocol just in case a blood clot had formed and stroke was ruled out.

 

My pain changed to what I explained as being tazed or electrocuted to my entire left side along with left leg weakness.  I repeated asked the surgeons and primary care doctor if this could be related to my discontinuation of Prozac & clonazepam after 14+ years and was completely dismissed.

 

I was placed on Lyrica (which I had expressed concerns over due to previous suicidal reaction to gabapentin), hydrocodone, muscle relaxers and .5 mg of clonazepam to control the pain, which at this point prevented me from sitting, standing or eating.      I have very little memory of a 3 month time frame when I was on this cocktail of medications and they did not relieve any pain.  Thankfully the neurosurgeon and pain management neurologist at Mayo Clinic informed us of this terrible 'recipe for disaster' after I apparently reached a suicidal stage and I weaned off all.

 

In the interim I visited Mayo Clinic in Jacksonville, FL for help.  This is where I was diagnosed with Central Sensitization Syndrome where your brain misfires signals to your nerves.  Once again I specifically asked if the discontinuation of both Prozac and clonazepam after so many years of maintenance for PTSD could contribute and was told they may never know what causes the syndrome.  MRIs of my entire spinal cord were preformed as well as CT scans of my abdomen and brain which ruled out any physical causes of pain other than moderate to severe spinal stenosis.

 

I was advised to try an intensive 3 week outpatient program at Mayo Clinic to retrain the nerves.  Unfortunately the initial intake appointment isn't for 3 months and it is unclear when I would actually enter the program.  Mayo is a 10 hour round trip for us so I will be staying in a hotel for this program.  I finally had a 3rd opinion with a local neurosurgeon which was the first doctor to support another doctor's opinion.  He advised me to stick with Mayo Clinic's care plan.

 

Unfortunately my pain and inability to get out of bed increased I began having full panic attacks resulting in blackouts.  After weighing my options I returned to clonazepam for relief and surprisingly within an hour my pain level was cut in half.  As my panic attack returned later that day to a black out stage I took another clonazepam and the nerve pain subsided.

 

To me this re-enforces the damage that long term clonazepam use creates.  I have since restarted Prozac at a minimal amount.  I look forward to the Mayo Clinic Central Sensitization Syndrome clinic to find out if there is a way to discontinue use of these medications, however I am open to the possibility that I may have to remain on them for maintenance.

 

In addition to my PTSD I also have the additional diagnoses:

GERD - Prevacid 30 mg x 2 per day

IBS - controlled by diet (uncontrolled during panic attacks)

Asthma - elected to not use medications due to side effects that increase panic attacks

PVCs - healthy heart with PVCs caused by panic attacks

Moderate to severe spinal stenosis - no medications as they interfere with IBS and GERD

Current other medications: .5 mg clonazepam 2 or 3 times per day plus 20 mg Prozac (started 1 day ago)

 

I was happily able to leave the house yesterday for a one mile walk and lunch out, however it was very overwhelming and something I believe I need to build back to.  My nerve pain returns on and off along with the panic attacks which I hope will become more controlled as Prozac begins to work.

 

I am sharing my experience for anyone else that could be having similar unexplained and uncommon symptoms.  This is a new area for professionals and by no means is definitely related to discontinuation of clonazepam.  My care team at Mayo Clinic also tried epidurals and nerve blocks for pain which resulted in extreme gastrointestinal intolerance and increased pain.  This was another tool that lead them to the diagnosis of Central Sensitization Syndrome (which encompasses multiple other central nerve pain syndromes).  In layman's terms they repeatedly tell me that I have a very angry nervous system which will take work and time to calm down.

 

As a very independent, professional woman I never imagined that this could happen to me.  It can happen to anyone and the side effects and results vary dramatically.

 

Thank you to all who have shared their experiences.  I greatly appreciate being able to read the variations.

 

Thank you for sharing, this explains what I am feeling but could not quite understand.  I like the description of withdrawal (drug leaving body) vs. recovery (everything after the drug is gone). 

Here's a link to Parker's 'What is happening in your brain?  What is happening in your brain

 

The following is a full copy of the text:

 

This will hopefully be an encouraging email to make you feel SAFE and ENCOURAGED.

 

As some of you may know, my degrees are in speech-language pathology (B.A and M.S.)

As part of my Masters study, a big portion of my classes were in neuroanatomy and physiology.

I learned firsthand how to look at a person who had just undergone a stroke or brain injury and read the symptoms, the radiology reports, the doctor's notes,  and based on those symptoms, to form an image in my mind of what was affected in the brain injury - as well as how to formulate a treatment plan to help that person rehabilitate. For a therapist in a hospital, it is much more than "speech and language". It is about reteaching how to swallow, eat,  rebuilding memory, rebuilding concentation and attention, rebuilding focus, rebuilding executive functioning skills (planning and acting on a plan) -pretty much ANYTHING that is involved in "thinking" that helps you get OUT of a coma, OUT of a hospital, and back to life, work, and school. 

 

I had NO idea I would ever personally undergo a brain injury.  But insomuch as I have now indeed endured one, I often laid there in waves and attempted to "analyze and decipher" what was happening in my brain as I healed. I thought you all might like to read this. It gives potential answers to all the "WHY?" questions we have about what is happening to us mentally.

 

First of all, a TRUTH to accept is that WE HEAL.  I have seen people emerge from comas who cannot remember who they are - HEAL.

They can't remember how to walk (we do).

They can't write their names (we can).

They cannot tell you the year or the president (I was SO bad I was unsure of this at times, but generally, I was oriented to this).

They often cannot remember family members (we can -our D/R can be hideous, but we remember them).

THEY have to work through many hours of therapy to heal. But most of them do - and from TRAUMATIC PHYSICAL brain trauma that can tear tissue and tear nerves.

We have none of that. We don't have to undergo therapy. We simply have to wait.

 

Most of us, me included, didn't expect the temporary "brain injury" we got when jumping off benzos.

But I am starting to realize through my own experience and my educational background, that there is a PURPOSE in every symptom we have.  I have had months and months to analyze what is likely going on in the brain at a gross level - and I want to attempt to explain certain symptoms in a way that we can visualize - so that they are less "scary" and more "telling" of the healing that is happening.

 

First off - let's start with GABA and Glutamate. Most of you may know how this works by this point. But for those that don't, we have a huge nervous system of millions of nerves (neurons).  They don't "touch" each other. They are separated by a tiny space in between. However, they communicate via chemicals. The 2 MAIN chemicals in the entire nervous system are the BIG GUNS.  They are GABA and Glutamate. They are BOTH at work at ALL times in the CNS.  It isn't like one is working and then the other is working. They are BOTH ALWAYS working in tandem to control every aspect of movement, sensation  - everything. They take the incoming information and appropriately pass it along - they "trim up" the information appropriately so that we can process it.  They are like the steel structure of a building.  The entire building needs a steel structure to stand. 

 

GABA is inihibitory.  If a nerve releases GABA - it is to Inhibit function - this could be to "slow it down" or it could be to "limit the sensory input" so that we can process it.  In the same way, GABA might be released to help "steady" your hand while doing something like painting a very detailed painting.  GABA "shores up" movements to make them more fluid.  That's just in a nutshell. Of COURSE it does a lot more than this, but the idea is that GABA is present in the ENTIRE CNS and ALWAYS working to balance every sensation, movement, etc.

 

Likewise, Glutamate is the balance to GABA. It is the "excitatory" transmitter. It fires to speed things up - to initiate action - to make things "go".  There's a lot more to it, but Glutamate is kinda the opposite of GABA. 

 

BOTH are required to work at all times.  Neurons are ALL ALWAYS firing off GABA and Glutamate on a endless cycle all throughout the nervous system. It's quite amazing really.

 

What does a benzo do?  If a person is anxious - they may be so stressed that they cannot overcome a very traumatic event or anxious situation.  If a doctor prescribes a benzo - the benzo comes in and sorta "holds the door open" for ALL the GABA in the system to FLOOD into the nerves - even when that is not what the nerves would actually want to occur. The immediate effect is that EVERYTHING ni the body SLOWS DOWN and is inhibited. This might be helpful during surgery, for anesthesia, for a seizure disorder.  Yes - the benzo - by definition - will act on GABA and "slow everything down".  And yes - the net effect of this is that a person may feel drowsy, calm, less anxious... everything is being inhibited.    And in general, taking a benzo for "one day"  is okay. When the benzo is gone, the body just reverts back to regular operation.

HOWEVER, if a person takes a benzo day after day,  while indeed the person feels less anxious, the body begins to realize that it cannot DO the things it needs to do in this very slowed-down neuron state. It cannot make hormones. It cannot create enzymes. It cannot digest correctly. It cannot keep a heart going efficiently. It cannot get enough oxygen- and on and on. The body NEEDS to run at "normal" speed - not this "inhibited speed" all slowed down. 

But what can the body do? It cannot "remove the benzo" from the system. The only choice the body has to maintain a regular speed is to do two things ..  It can TURN OFF it's own GABA receptors - thereby rendering those benzos unable to affect the GABA in the system. And it can grow MORE excitatory Glutamate receptors to counteract the slow-down.  And that's kinda exactly what happens....

 

Only - this isn't true balance either.  The body does the best it can - but over time, things begin to suffer.  The body cannot make enough serotonin in this state. Or dopamine. Some things get made in excess - and other things do not get made enough!  During this time, a person may not be aware this is all going on. He may not be able to perceive any difference. But ONE day - the person may wake up sad - or not sleeping well - or unable to remember things fully - or his vision doesn't look right....and it becomes apparent the person has "hit tolerance".  The body is taking the same amount of drug -but try as it might, it just cannot overcome what has occured. It can take weeks, months or years to hit tolerance. Some people do and some don't before trying to get off benzos.  (I did. - it took me 9 months to hit tolerance.  But it was fast.  Once I hit it, I could notsleep more than 6 hours on all that klonopin AND Ambien! I couldn't remember things last week. I was crying all the time... something was wrong.)

 

The process to reverse this takes a while.  GABA receptors have to UPregulate and effectively "reopen" or "grow back".  Glutamate receptors must DOWNregulate, or effectively "turn off" or "prune back".  And IN this mix, all the smaller monoamines (neurotransmitters like serotonin, dopamine, norepinephrine) must somehow find a way to synthesize in the mix.  Through weeks and months the body is rebuildling millions of neurons, and changing pathways, rebuilding GABA, downregulating Glutamate, rebuilding serotonin, rebuilding dopamine, rebuilding norepinephrine.  And ALL the enzymes and hormones that need to be made are attempting to be made while this is going on.  Basically- you have a building where the MAJOR streel structures are trying to be rebuilt at different times - ALL while people are coming and going in the building and attempting to work.

 

It would be like if the World Trade Center Towers hadn't completely fallen - but had crumbled inside in different places.. Imagine if you were trying to rebuild the tower - WHILE people were coming and going and trying to work in the building!  You'd have to set up a temporary elevator - but when you needed to fix part of that area, you'd have to tear down that elevator and set up a temporary elevator somewhere else. And so on. You'd have to build, work around, then tear down, then build again, then work around, then build... ALL while people are coming and going, ALL while the furniture is being replaced, ALL while the walls are getting repainted... ALL while life is going on INSIDE the building. No doubt it would be chaotic. That is EXACTLY what is happening with windows and waves.  The windows are where the body has "got it right" for a day or so - but then the building shifts and the brain works on something else - and it's chaos again while another temporary pathway is set up to reroute function until repairs are made. 

And just like the Twin Towers- it's possible - but the buiding is a major effort -and it takes a good year or more sometimes.

(Now look at the new Tower that stands at Ground Zero!  It's taller, stronger, and a symbol of freedom.  JUST like you will be!  )

 

So - okay - what is happening in that chaos?  What parts of the brain are responsible for these symptoms? 

 

Now, I don't "know" the following based on research, because not enough research has been done yet  - but based on my studies in neuroanatomy and my own withdrawal experiences, here is how I have analyzed what is "happening" during wave symptoms. Remember, I have had to look at radiology reports of brain damage and estimate what a patient might present with - so this is very similar. Instead of a radiology report showing me what has been damaged, I'm using my own brain symptoms to surmise what is going on....

 

Let me first list brain structures and their functions. This will help you understand where things happen in the brain and when symptoms occur, what may be happening.

 

BRAIN STRUCTURES

- amygdala  - This is the FEAR center in the brain. It's a tiny part in the middle of your brain. Fear is protective and it's GREAT if you need to assess something that is dangerous and to ACT  - like if a rabid dog were chasing you. - but it's hard in recoveyr when it's all you feel for months! But the FEAR is not truly in your MIND. It's in your BRAIN.  There is too much glutamate acting here in the amygdala and not enough GABA. So the nerves are firing off in the fear center when nothing scary is really there in your environment.  It is normal for that to happen given the circumstance physiologically. But it feels awful, doesn't it?  I know.  But it's just a brain structure. This can account for fear, agoraphobia, fear of water, fear of anything.  It's not that you're really "scared" of the moon - it's that you're in almost constant fear because this brain structure is healing. The glutamate is pruning back. The GABA receptors are opening back up.  It may or may not continue for awhile. It will abate. Then come back. But eventually, the brain will get it right. 

 

-Hippocampus - This is the "memory" center of the brain. It ties in old memories to emotions.  The same thing is happening here that is happening in the amygdala with GABA and Glutamate. So - voila. You get intrusive memories from ALL times in your life.  It's wild and wicked and wooly. But it can't hurt you. And if you can learn to visualize this as what is happening - then you can learn to be objective and realize it's normal.  And like the amygdala - it will come and go and frustrate you, but it will go away when the physiology is restored.

 

Hypothalamus This is the structure that is responsible for regulating body temperature. In early withdrawal, my body temperature would drop to 96 degrees in waves! Then 3 hours later, it would return to normal. I'd literally freeze in terror in bed for hours.  I am sure it is more complicated that JUST the hypothalamus, but I could picture this part of my brain retuning and restructuring, and it was less scary that way.

 

The following structures in the brain are part of the "gray matter" or the "cortex "and what we consider to be the "higher brain"- the thinking and processing parts.

 

Frontal Lobe This is the part of the brain behind the front of the skull. It is responsible for planning things. For making decisions. For inhibiting emotions appropriately.  It is the part of the brain you need if you want to make a sandwich and need to get out the ingredients and actually make the sandwich. I have seen people with brain injury be able to TELL you how to make a sandwich - but when they are standing there in front of all the ingredients, they cannot actually move to act to make it! They have frontal lobe damage. They can TELL someone how to make it. But they cannot themselves initiate doing it! As you can imagine, with therapy, and time to heal, this goes away. And we are a lot like this - but it goes away for us, too.  I could not organize my children't toys just 4 months ago.  Not a simple room of toys. I didn't know where to start and I literally could not mentally do it. I imagine this is partly why.  No frontal lobe GABA. And too much Glutamate.  But now, check out this post I"m typing.  Obviously that changed.

This calms down and these things come back.

 

Occipital Lobe This is the vision center. t's at the back of your skull.  In recovery, my nerves have been all wacked here. I see things as too bright - possible due to this lobe - and/or the actual visual nerves in the eyes.  But no doubt people "see things" that aren't there.  Vision is distorted. Things go blurry.  Colors are totally off.Brightness is off.  There are a hundred symptoms possible in vision alone!  But again - it's a matter of time.

 

Vestibular System This is the system of semi-circular canals in the inner ear that are responsible for making you feel balanced in space.  When this is "off" or damaged temporarily, you feel dizzy. Oh man, was I dizzy. Early off - I felt like I lived in a funhouse.  Over time, a combination of this vestibular system and my damaged visual system made things look like they were "leaning". To this day, one eye sees things "correctly" and the other eye sees things as SLIGHTLY leaning. And it's not that the eye itself is seeing them that way.  The healing vestibular system is working WITH the eye to "tell" the brain that that object looks like it is "moving left-wards" or "leaning". But it isn't.  In waves, this can happen bad - and then be GONE - poof - in a window. This is just the vestibular system healing. It's gotten WAY better.

 

Temporal Lobe  These lobes are on the side of your brain on each side near your ear. It makes up the whole left and ride side of your brain.  This is where auditory information is processed, including hearnig itself, but also the "Meaning" of what we are hearing, as well as part of speech and language, emotion, and buncha other stuff.  In early recovery, someone was talking to me and I couldn't tell you what they said past the first sentence.  My auditory processing was ALL messed up.  I couldn't picture what a person was saying to me in real time - and by the time I caught up to them, I was lost and they were talking about something else! Also - When I was laying there in bed, I could "hear" things that weren't there in the noise of my box fan. I'd hear the fan blowing -but I also "heard" like sickening circus music. I believe this is because there is noise coming into my ear - but my brain cannot adequately "prune" what it is hearing at differnet frequecies because there is not enough GABA to inhibit it to create something meaninful.  There was all this "noise" and my brain was just firing off glutamate.  So instead of actually "processing" the noise - it was firing off ideas about what it was hearing - and they were ALL wrong.  I would be hearing what sounded like circus music - and at the same time, my poor brain was looking through my hippocampus to find all the memories I ever had of being at the circus - and then I'm reliving those memories- and at the same time, my amygdala is getting fired upon - so I'm in fear. So I'm a quivering mess of a person laying in the bed hearing and seeing things and remembering times in my childhood and scared to pieces.  Seriously? Yes - I felt crazy. But not in my MIND.  It was my BRAIN.  It's the BRAIN.  And it's normal. The structures in the brain are "obligated" to work this way.

 

That brings me to my next point... WHY do all of us in benzo recovery have generally the same symptoms? Well - it may make you feel calmer to realize that our brain structures are NOT broken. They are doing EXACTLY what they are supposed to do under the circumstances.  And all of our perceptions of what we are seeing, feeling, hearing- are normal because the parts of our brains that are firing off are doing so because a) They still DO work. b) They work just as they were intended to. c) They are actually healing as all this firing is going on. 

 

Why the depression and anxiety? It's so complicated, but this WHOLE system is interdependent. At that SAME time as ALL this stuff is going on, the entire body is trying to heal in every place GABA and Glutamate naturally act (uh - and that would be - EVERYWHERE).

The intestines, stomach, eye balls, skin, toenails - seriously - where do we NOT have nerves? 

Anything we didn't have as a pre-existing condition is fair game for being affected by the recovery that takes place. 

This includes the body's own ability to make serotonin that is required to feel "balanced" and "happy". And you guessed it. This is not being made very efficiently in a building that is under major construction. So - you may get a day or so of feeling good - and then - boom - that's gone until you can make enough serotonin.

Oh - and by the way - serotonin HELPS TELL THE NERVES WHEN TO RELEASE GABA AND GLUTAMATE! Ha!

So on top of needing GABA to make serotonin, you need serotonin to regulate the release of GABA into the system! 

How much more interconnected can you get?  God - it's a wonder it knows how to heal at all!  But it does!  Amazing to me, really.

 

This is just some limited information to give an idea of what is going on in neurophysiology.  Obviously this is very cursory and not super detailed. But there is a bigger point here than "what parts of the brain are affected". 

The point REALLY is - IF  YOU KNOW that symptoms are tied to parts of a NORMAL brain under reconstruction, then you can begin to rest a little more easy in your mind that under the circumstances, the symptoms themselves are a GOOD sign. 

Without intrusive memories - as awful as they are - especially when mixed with fear - but without them, your memory itself would not heal.  It IS healing - and when you are having intrusives, try to think of it that way.  Tap your finger to your temple and say to yourself, "I know what this is. This is my hippocampus healing! Ha!" Because it IS.  And if it were NOT healing, you would not be having those symptoms.  ANY part of the brain or body that needs to heal is going to "experience" something in the form of symptoms - and you are going to notice that. But it is part of  process that is inevitably returning to the balance that it could not achieve while we were still putting those pills in our mouths.  (And if you're tapering, this is still happening - just likely with less trauma than with what happened to me when I cold-turkeyed.)

 

So - when you have symptoms - know that symptoms themselves are a way for you to know that healing is taking place.

 

And finally - realize that the DRUG is GONE.  This is withdrawal - yes - okay -we call it withdrawal -  but it's really "recovery".

The benzos are gone. The "evil drug" is no longer there.  The symptoms that are left are not the "enemy". That's our brains doing the EXACT right thing. What's happening to our brain at this point is not the "benzo beast" It's OUR BRAIN recovering.

Not to degrade anyone who calls it the benzo beast - I get that. But just so you know - you're not really fighting a beast.

You don't even need to fight it.  Just wait it out. All that reconstruction is happening on your building.

And soon - the frame will be back standing, stronger than before. The furniture will be inside. The elevators will go all the way up to the top again.  And the people can come and go and work like a well-oiled machine. 

Don't feel you need to fight the recontruction. It's just healing. And all that is happening to us is a sign of that.

 

Hope this helps somebody a little - or maybe a family member. 

 

And if you ARE a family member, please realize that those of us in recovery are no more in control of how we feel or what we experience than people who have undergone brain trauma in a car accident. Please be patient with us, because our brains are healing and we are in the process of reconstruction - and our function is temporarily enabled, then disabled, then enabled, then disabled again.  And that is totally normal and expected.  We can no more help that than a person can "want" to wake up out of a coma. It happens when the brain is able - and not out of sheer will.  But it does happen. So please stand by us and say loving things and reassure us every day. Notice our improvements and tell us what they are.  Encourage us when we feel good.  And when we don't, just hold us and hug us and tell us it will be okay.  Anything you would say or do for a family member that had had a car accident and a brain injury - please do that for us.  And be patient... we are getting there.

 

:)Parker

 

 

ADDENDUM

 

I got a great PM from a buddy asking "What about the physical symptoms of pain?" - and think it deserves some theoretical attention.

 

I want to take some time to add some theories about PAIN and physical symptoms such as burning, akathisia, and tingling, prickling, and things that happen during recovery of this nature.

 

I will also add this as an addendum to the original post on page 1.

 

First off, let it be said that I can only "theorize" as to this, - I am not a doctor.  But I DO think logical theories are helpful because they give us a story and mindful logic to cope with in the MEANTIME as we are going through this.

 

So these are multiple sources of information that I'm tying together - some are from nerve regeneration, and some are from what we know about "how the brain works".  And some or ALL of this is likely going on when it comes to pain and skin/muscle sensations:

 

First off - I think a good quote comes from a Plastic Surgery practice that has published things on "nerve regeneration after injury". 

 

The quote follows:

 

"The usual events associated with normal nerve regeneration can be painful. As the regenerating ends of the nerve, called sprouts, travel, they make contact with each other and with structural proteins. The neural impulses generated by this activity may be interpreted by your brain as pain. It should be expected that for the time period associated with nerve regeneration there may be pain sufficient to need therapy and/or pain medication. Just understanding that this is expected to occur, and is "good pain'; or pain for a good reason, is enough to help many people adjust to its presence.  This condition is not just one of pain, but is associated with over activity of the sympathetic nervous system, so that the area of pain is a different color, like pink or purple, and is usually a different temperature, like cooler, than the surrounding non-painful skin."  http://www.riversongplasticsurgery.com/pdfs/nerve_injury_nerve_reconstruction_recovery.pdf

 

Well- this article isn't talking about "benzo - related nerve damage. It's talking about nerve damage caused by physical trauma of crushing, cutting, or compressing nerves. But what can we glean from it nonetheless?

 

We can assume that if the sympathetic nervous system is involved in the presence of pain related to healing nerves - AND IT IS- that it is also NORMAL for us to have pain as we are undergoing healing.

 

When I was in earliest recovery, I would often get out of the shower and have pink spots all over my feet and my abdomen. At first they were bright pink for about 2 months - and then they faded out and I don't have them anymore.  I have no idea what they were - but they were NOT there 12 days prior to my rapid taper - and then they showed up.  The spots weren't symmetrical - they followed no pattern, but they were alway in the same place on my skin.  And only after getting out of the shower.  It is easy to see how the nervous system could be involved in skin redness, irritation, and weird feelings associated with recovery.

 

Likewise, throughout recovery, I've had and continue to have cooling, burning, prickling and occasional stabbing sensations. I've had it feel like my skin was "wet" when there was no water on it.  Again, though. This is all normal - and like the quote says above.."Just understanding that this is expected to occur, and is "good pain'; or pain for a good reason, is enough to help many people adjust to its presence."  It doesn't make the pain FEEL any better in the moment, but it does help us not to become anxious about it. It's normal.  And it's a sign of healing.

 

What about akathisia?

Well  - from the reading, the exact cause of akathisia is not 100% conclusive, but it seems to be related to dopaminergic and/or noradrenergic activity in the brain  (dopamine and norepinephrine or noradrenaline as it is also called). These are just neurotransmitters - and it doesn't look (to me) to be exactly conclusive WHY this happens - but akathisia can happen after the use of many psychoactive drugs- not just benzos - and likely because anything that alters brain chemistry can alter dopemine and norepinephrine. So - okay. That makes sense.  We all took "brain altering" drugs - and now some of us have akathisia.  Guess what?  It seems pretty normal!  It's not fun. But it's normal.  And it can come and go and then go away eventually.  For me, I didn't get akathisia at all until month 8. It was a surprise.  It was intense and awful. But it passed in a few weeks. Since then, I have had it off and on - but not to that degree.  And now - it's mostly just annoying.  Something as simple as a good hard cry in the bathtub can COMPLETELY remove it at times.  And other times, I just have to wait for a wave to pass. But all in all, from all this information - it's normal. And the fact that it's coming and going and I'm getting hit here and there - it's a sign that the wheels are turning up there in the noggin - and things are shifting and attempting to rebalance.  So if we can keep that quote in mind - it's normal - and while the sensation itself is very uncomfortable - if not painful - it can be regarded as a "good pain" if we are able to recognize that our feeling it means we have a brain and nerves that are regaining their abilities to function.

 

Likewise, as a scab heals over a wound, the new skin formin underneath can become "itchy". Why does this occur? Why does a scab itch?

 

"The itch of a healing wound is caused by the growth of new cells underneath the old scab. New skin cells would be growing underneath, and as they form a new layer of skin, then the scab becomes more tightly stretched over this zone of activity. This can make it feel itchy. The itch sensation for burn survivors may be a tingling feeling caused by nerves re-growing, or from dry skin caused by the lack of natural oil production since oil glands may have been damaged or destroyed by the burn. As the nerves grow and start to receive and send messages, they may create that itchy feeling. The skin in this area will be a lot less thick than everywhere else, so these new nerve cells will be under a lot more pressure. Itching is a sign of healing." (Mayo Clinic)

 

As we can surmise, the umpteen bajillion sensation we have going on are not 100% conclusive in their origins....HOWEVER...

There IS a trend.

 

From what it seems like from all the reading...

NERVE REGENERATION CAN CAUSE UNPLEASANT SENSATIONS. As counterintuitive as it is,  HEALING CAN FEEL LIKE HURT.

But it's NOT further hurt or damage. It's the REVERSAL of damage. 

 

Um  - yeah - okay. Great - but what do I DO about it.

 

Pretty much the things that I have discovered that help through this healing are to "CONFUSE" the nerves as much as possible, IF possible. 

What? Confuse the nerves?

 

You know how you get a cut or an insect bite and you immediately press on it to make it feel less painful? What you are doing when you press or squeeze the area is "desensitizing' the entire skin region of the cut by applying pressure to ALL the nerves in the area. That way, the ONE sensation of pain from the cut isn't the only thing your brain is feeling.  The pressure from pushing down on  ALL the nerves in the area helps to send multiple sensation to the brain to "counteract" the pain sensation.  And it works.

Similarly, other things can help "confuse" nerves:

-Heat

-Cold

-Deep Pressure

- Massage

-creams like "Icy Hot" with menthol

 

All of these things have helped me cope in recovery.

 

Let me take it one by one:

 

Heat: I took and STILL take hot baths almost every day. In the peak of akathisia, I lived in the tub.   As hot as I could stand it really helped me. All the heat was "overregistering" in my brain and I was unable to feel the akathisia as much when in the tub. It was confusing the nerve signal and it was temporary relief.  I hated those days. But I got through them.  Likewise, a heating pad for pain was my friend a lot of the time. 

 

-Cold -  I used a cold washcloth on burning skin - and on my face and hands - and kept dipping it in ice water and applying it.  This is an easy one, but it helped. I had a wave with 3 days of "fireface" last month and all I could do was apply the washcloth, lay there and think about how "this is healing" and keep going. But the wave passed.

 

Deep Pressure  I use a 15 pound weighted blanket to sleep. I have for YEARS. I ordered it online. It has many pockets with little plastic balls equally distributed to create a very heavy blanket that creates "deep pressure". This kind of pressure is calming for anyone's nervous system. Occupational Therapists use it for children with autism, but people with anxiety can benefit from sleeping with one. And in recovery, I was glad to have it.  I used it often together with a heating pad.  It took the edge off just long enough. 

 

Massage This one CAN be helpful - but sometimes not.  I used to ask my husband just to "press down" on my head or my legs.  Just press there. Don't rub.  My skin hurt too much to rub, but the deep pressure from pressing was helpful. Other times, the actual massage was a help for sore muscles.  I was too agoraphobic to schedule a REAL massage. LOL. But just this help from my family was nice to have.

 

Creams You're going to laugh, but there was a day that I put Vick's VapoRub on my face because my face was so HOT!  I figured if this is safe for my baby's skin, it's probably okay to try it on my face.  It worked! Oh man - my face felt SO good all day.  I used that for a few days until the wave passed.  I have also tried "Icy Hot" on my back when it was sore.  Things like this work on the same principal to "confuse the nerves".  If your nerves are too busy feeling the heat/cool of menthol, they cannot simultaneously feel "pain". So for a short time, the pain is not "felt" even though the "soreness" is technically still there.

 

All of these are ways I have coped.  I'm sure there are others you guys have used!!

 

The broad idea here is that

1) Healing is happening.

2) The sensations that feel like injury are NOT injury. They are the CORRECTION of nerve injury.  They just "fire off" as they heal.

3) We can use some things to cope.

4) It's going away in time.

 

I know this is not a "fix" to the feelings.  There is nothing anyone could say to me while I was IN pain that made the PAIN better.  All I could do was cope and cry and try to get through it.  But knowing it's normal and that I'm not getting worse; I'm getting better - is always something I benefit from knowing. 

 

I still get these symptoms - and I'll be SOOOOOO glad when they are gone.

 

Thanks to the Benzo Buddy that brought this up. 

 

:)Parker

[/quote

]And what about the stomach What happens? I have cramps 24/24 vomiting acid the acid goes up for my throat nose. Eating and drinking stops halfway. What could it be? For breath? I struggle to breathe I miss your breath even when I fall asleep and wake up. I don't breathe. Do you know why?

After years of wrangling with benzos, I'm finally fully free of them now. Started off with Nitrazepam, don't remember when. Then diazepam for a while, and then Xanax 2 mg for some years. Crossed over to Knonopin 4 mg. Tapered to 2 mg, 1.5, 1 mg, .5 mg, .25 mg and stopped. It IS rough on the mind and body but my doctor's given me 100 mg Zoloft daily to smoothen some of the symptoms. I can feel the changes happening inside, but I'd be doing myself a disservice if I again get these vile meds off of online pharmacies etc. I now know my personality is actually mild mannered and passive, benzos had turned me into a an angry wreck. Hope I get over and succeed in the taper...

This was so helpful for me. Thank you so much for sharing. I really needed this and it gives me hope for a better future.🙏😊

Hi,

That was the most informative and reassuring words I have read ever!!!!

Thank you for explaining and for sharing that valuable information.

 

Wishing you all the happiness and live your best life

I have a 39 year strong medical background. This was SOOOOOOOOOOOO well written. Thank you.

I wish my 3 months of dry mouth, and sometimes a little difficulty swallowing would go away. I've had several symptoms that have abated, so I'm going to be positive and think this is just another symptom that will go away in time.

Thank you. I will need to read this several times. I so grateful I found this group. My brain wants to heal.

well written, informative and encouraging. what about those poor people like myself that already had central sensitization? my pain is spreading and allodynia is horrendous. I can barely do anything.