18 - 30 Month Plus Group

nevercantell......thanks for your message.....I, too have pain....my arms,  shoulders and hands  are probably the worst.  But the adrenaline/cortisol is my main core sx and it is debilitating.  I agree that any bit of stress can make things that much worse.....but how do you avoid stress....we are in the middle of it.  We just have to keep moving forward, I guess....as difficult as it is...there is no other choice.

 

Hoping for complete healing for us all real soon..........

 

 

I have the same pain too, even in hands. Anyone with it in ankles and feet. It's hard to imagine this will go away. I agree about stress. The thing is EVERYTHING IS STRESS. Just had a brief conversation with a neigbour, trying to act normal and now my heart is racing, cortisol crap. At least we have the same stuff.

 

Burning mouth and throat today...... hate this.

Sorry, marj that you are going thru the pain also.....what does your pain in your hands feel like....

 

Have you had the cortisol/adrenaline sxs all the time....not feeling like yourself....overwhelmed, irritable.....causing the anxiety to sky rocket...

 

I don't have the burning mouth but do get a hoarse throat......hate all of this, too.

Hey bcalm, nice to have you hear. Sorry,  I never said that before, I didn't realise you're a new poster here 

 

The pain is like the joints are stiff and hurt and nerve like stuff and yes I have all the other stuff you mention. It's horrible. I had crushing fatigue earlier and now it's turned to anxiety. Been doing some wedding to try to distract, but not helping, don't know if I make things worse by pushing. Had a day off work, thank God,  as I don't think I could have gone today. Praying this ends soon for us 🙏 Enough suffering.

Hey guys. Thought I'd just give a brief up date on my situation. I'm making steady progress. March was better than February. My skin burning is gone and has been gone for a few weeks  I'm still feeling a slight anxiety through most of the day, but it's pretty workable. I'm only checking my pulse three or four times during the day - so that's progress! My dizziness and paresthesia is getting better too, though I still have better and worse days. I'm working diligently on getting mild exercise and relaxation practice in every day, eating well and staying away from caffeine, supplements and alcohol (of course). It's been 8 weeks since my last dose of Remeron and so I'm pretty confident there isn't going to be any blow back from that. I'm starting to feel cautiously optimistic that this might be the last year of withdrawal for me. Though I've been optimistic before and that didn't turn out so well 

 

We'll see... regardless it's been good to have some relative calm after being in a s*** storm for so long.

 

Sorry to see all the suffering here. It's hard to see when we're in the thick of things, but we are getting better. The majority of us posting here will be healed or mostly healed within the next couple of years so we just have to keep on doing our best and taking this one day at a time.

 

Hope to have even better news the next time I update 

 

jj

Thanks for the welcome, marj.....

 

My hands and fingers get stiff....feels like the tendons have all stiffened up .....had tests done in July and was diagnosed with carpel tunnel....never had any issues with my hands or wrists ever before these drugs....but at the time of testing....some fingers were numb and I had a lot of pain...now fingers are not numb and pain only sometimes...but still have stiffness.  So they seem to be a bit better than when the testing was done.  At least now I can form a fist but before I couldn't.  It is unbelievable how these drugs can damage the whole body and mind.

 

Wish someone would find that magic pill to make us all better.

 

 

Hey guys. Thought I'd just give a brief up date on my situation. I'm making steady progress. March was better than February. My skin burning is gone and has been gone for a few weeks  I'm still feeling a slight anxiety through most of the day, but it's pretty workable. I'm only checking my pulse three or four times during the day - so that's progress! My dizziness and paresthesia is getting better too, though I still have better and worse days. I'm working diligently on getting mild exercise and relaxation practice in every day, eating well and staying away from caffeine, supplements and alcohol (of course). It's been 8 weeks since my last dose of Remeron and so I'm pretty confident there isn't going to be any blow back from that. I'm starting to feel cautiously optimistic that this might be the last year of withdrawal for me. Though I've been optimistic before and that didn't turn out so well 

 

We'll see... regardless it's been good to have some relative calm after being in a s*** storm for so long.

 

Sorry to see all the suffering here. It's hard to see when we're in the thick of things, but we are getting better. The majority of us posting here will be healed or mostly healed within the next couple of years so we just have to keep on doing our best and taking this one day at a time.

 

Hope to have even better news the next time I update 

 

jj

 

Glad you got a break jj! Hope it keeps up for you. I had a better day today too. I was able to get 8 hours of sleep last night luckily, which helps a lot. I only got two hours the night before. My wife says I fell asleep almost immediately. I woke up at 4:37am, but luckily fell back asleep. Hopefully tonight goes as well.

 

Bcalm I have problems with stiff hands too. I'm of Scandinavian decent and think withdrawal brought on something called Viking Hand. It's common in Northern Europeans, especially Scandinavians. Not saying that's what you have. Just thought I'd mention it.

Sorry, Siggy....that you also have the stiff hands.....but have never heard of the Viking hand.

 

Good that you are finally getting some sleep.....something we all can use more of.....

Had to post this haha. Good for a laugh

 

Does anyone else have anxiety and fatigue at the same time? Also does having a conversation with someone (like a normal person) ramp you up causing anxiety and DR?

Does anyone else have anxiety and fatigue at the same time? Also does having a conversation with someone (like a normal person) ramp you up causing anxiety and DR?

 

Yes, I call,that being tired and wired.  Being anxious is exhausting.  Yes, I feel anxious talking to people - hell I feel anxious just being awake and thinking.  The only time I don't feel nervous is when I'm sleeping for a few hours at night.  As soon as I wake up, I'm overwhelmed.  Surprised I sleep at all.

How are you doing today, Marg?  Are you at work?

 

Sorry, I meant Marj.  My twin sister is Marg.

Hi Flicka, yeah I'm at work, thankfully not busy. I've just been for my daily walk. I could face plant, can hardly breathe, having to remind myself to breathe, but it feels like there's no room. Neck feels broken too, it's like all the flesh is being pulled from the bones, if that makes sense. 

 

 

Does anyone else relate to this? I know I'm asking a lot of questions but I'm sort of freaking out 

 

Siggy, so glad you got some sleep 

What kind of work do you do, Marj?  Do you walk on your lunch break?

What kind of work do you do, Marj?  Do you walk on your lunch break?

 

 

I work for a NHS mental health trust (which freaks me out as I keep thinking I'm going to end up a patient), plus it's the same trust that told me I could keep taking valium and would get off fine because I did before. I see people walking round looking so drugged up and it triggers me. I work on performance related figures. It's quite easy really, but not to me right now. Yes I walk on my lunch break.

Well doing terrible again today. Got super sleepy around 11 and went to bed. Somewhat hard to fall asleep. Which I don't really understand if I'm nodding off minutes before. Woke wide awake just before 2am with massive splitting headache. Took some Advil and tried to go back to sleep, but wasn't happening. Took another Hydroxyzine, although I thought I shouldn’t. It maybe only gave me about 1 hours of crappy sleep. Ugh I'm so tired of this insomnia. If I could just sleep 6+ hours every night, I would feel a lot better.

 

Does anyone else have anxiety and fatigue at the same time? Also does having a conversation with someone (like a normal person) ramp you up causing anxiety and DR?

 

Yes and Yes.  Tired and wired as Flicka says.  As far as DR, I feel like everything is a dream about half the time.  The more relaxed the more it's not there.  I get DR every time I talk too much to one person and have to maintain eye contact.  It's just too much for me for some reason.  It even happens when I talk to family and friends if I get too emotionally invested in the topic.  In a word.  Overstimulated.

Siggy,

You seem to be in a pattern of not sleeping much one night and then making up for it the next night.  I find if I sleep more than 6 hours, the next night I probably will only sleep 4.  It seems to average out to about 5 hours and has been like this for years.  Not sure if it has anything to do with benzo withdrawal or just my normal anxiety which seems to cycle quite a bit.  I always used to sleep more in the winter and be depressed and less in the summer and be more hyper but now, who knows?  I guess being in Florida for the winter is confusing my brain which is used to being in the frozen, dark winter.  All I know is my sleep isn't great and I often feel worse when I sleep more.  I slept much better when I was your age.  I'm sure your sleep will settle down.  I've always been a super sensitive person and a very light sleeper.  Had to sleep alone ever since I had kids because I got even more alert to noise.  Always wished I could just pass out on the couch with the tv blaring like my hubby does.  I used to do that years ago when I was working and would try to watch tv in the evenings.  I would doze off and couldn't seem to stay awake to watch the show but the minute I went to bed, I would be wide awake.

I'm sure you will sleep well again tonight and you will eventually get back into your regular sleeping every night cycle.

Siggy,

You seem to be in a pattern of not sleeping much one night and then making up for it the next night.  I find if I sleep more than 6 hours, the next night I probably will only sleep 4.  It seems to average out to about 5 hours and has been like this for years.  Not sure if it has anything to do with benzo withdrawal or just my normal anxiety which seems to cycle quite a bit.  I always used to sleep more in the winter and be depressed and less in the summer and be more hyper but now, who knows?  I guess being in Florida for the winter is confusing my brain which is used to being in the frozen, dark winter.  All I know is my sleep isn't great and I often feel worse when I sleep more.  I slept much better when I was your age.  I'm sure your sleep will settle down.  I've always been a super sensitive person and a very light sleeper.  Had to sleep alone ever since I had kids because I got even more alert to noise.  Always wished I could just pass out on the couch with the tv blaring like my hubby does.  I used to do that years ago when I was working and would try to watch tv in the evenings.  I would doze off and couldn't seem to stay awake to watch the show but the minute I went to bed, I would be wide awake.

I'm sure you will sleep well again tonight and you will eventually get back into your regular sleeping every night cycle.

 

Thanks Flicka, I definitely had a pattern before of sleeping ok one night and bad the next. This time it seems so much more erratic. I was sleeping great last year before my alcohol setback. I'd head to bed around 12:15 to 12:30 and would be asleep within 15 - 20 minutes. Then I would mostly sleep through the night for 6-1/2 to 7-1/2 hours. I just can't believe one night of beers did this to me. I really hope it turns around soon. Going into 3-1/2 months since I screwed up.

Does anyone else have anxiety and fatigue at the same time? Also does having a conversation with someone (like a normal person) ramp you up causing anxiety and DR?

 

Yes and Yes.  Tired and wired as Flicka says.  As far as DR, I feel like everything is a dream about half the time.  The more relaxed the more it's not there.  I get DR every time I talk too much to one person and have to maintain eye contact.  It's just too much for me for some reason.  It even happens when I talk to family and friends if I get too emotionally invested in the topic.  In a word.  Overstimulated.

 

well described Mike

Does anyone else have anxiety and fatigue at the same time? Also does having a conversation with someone (like a normal person) ramp you up causing anxiety and DR?

 

Yes and Yes.  Tired and wired as Flicka says.  As far as DR, I feel like everything is a dream about half the time.  The more relaxed the more it's not there.  I get DR every time I talk too much to one person and have to maintain eye contact.  It's just too much for me for some reason.  It even happens when I talk to family and friends if I get too emotionally invested in the topic.  In a word.  Overstimulated.

 

well described Mike

 

 

Yes, thanks Mike, so relatable sadly. The over stimulation is ridiculous.

It's not just the conversation but noise of any kind that stresses me out.  More than one person talking at the same time or the tv and someone talking.  My brain just can't compute and I get immediately overwhelmed.  Can't stand crowds or restaurants or anywhere there are people talking or music.  It's ridiculous.  My life is so limited.

Our lives are the size of a dime these days.  When I have to interact with anyone, it feels like the whole conversation is scripted and someone else is talking, not me.

 

Sofa

Our lives are the size of a dime these days.  When I have to interact with anyone, it feels like the whole conversation is scripted and someone else is talking, not me.

 

Sofa

 

Yes. And it's such an odd sensation. I worry that I'm coming across as either brain damaged or totally mentally ill and end up feeling embarrassed. Fortunately, I've found that for the most part, when I think I'm doing terribly the feedback I'm getting is I seem normal on the outside. This may be far more our inner perception than our outer reality. I'm ready for a new perception machine though!

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

 

 

 

 

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.