What is happening in your brain?

[[pa...]]

Hi Lisa,

 

First off - I'm sorry this has all happend to you.

 

I feel the best approach is the honest one.  -And the honest approach here is "I dont' know."

 

I personally haven't had this level of food sensitivity.  I have mostly eaten healthy throughout this, however, I am not drastically affected by sugar - while other buddies and friends of mine cannot eat a piece of fruit or have juice without it affecting them.  I'm aware that this is common, but it hasn't happened to me. 

 

The exception was caffeine.  It definitely affected me earlier on, however, I tolerate it now - and sometimes it actually really helps me.  I drink about 1/2 cup coffee most mornings.  Never more caffeine than that... just that coffee.  But there were times I couldn't have even ONE sip.  And on wave days, this is also true.

 

However, I AM more prone to some of the GI issues of constipation. Early in recovery, it was all adrenaline and loose stools.  Then I got to a point in recovery where it seemed like it was more constipation.  So about a month ago, I started taking a probiotic -and that has greatly "cured" the constipation.  I did a little research and it seemed that the probiotics that help constipation and bloating are the ones that include both lactobacillis and bifidum strains. (some studies say Lactobacillus Acidophilus and Bifidobacterium Bifidum ) - same thing. From the reading, these types of probiotics change the ph in the gut to be more acid - and apparently that improves the movement of peristalsis in the intestines.  I have found almost miraculously that the probiotic I take is working exactly like this for me. 

 

With that in mind, you can google "best probiotics for ____" and learn a lot.  I take one from the Vitamin Shoppe brand that is working great for me for constipation and bloating - so that I dont' have benzo belly.  Not that you're asking, but since I'm mentioning all this - this is the brand that I use.. http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=VS-2164 I chose it for the types of bacteria after reading -and also becuase of the reviews.

 

I know that wasn't your original question... the question was in regards to food sensitivity.  I am guessing that your system is just senstive.  Why mine isn't as sensitive is beyond me.  But at a year out, I still have d/r. Why?  LOL.  I dont' know. 

I just go forward planning to heal from this.

 

Probiotics are my attempt to strengthen my gut and immune system.

There isn't much I've found I can do in this except eat right, water, rest, light activity/exercise, sunlight, prayer, therapeutic crying, talking to friends, supporting others,  and feeding my mind positive messages.  Those are the things I'm trying to practice just passing the time and attemtping to give my body the best environment and nutrients and energy for healing.

 

Oh -just like you - the meat and vegetables really makes me feel good. I find I actually crave these things a lot of the time- which for me is unusual. Maybe these are some of hte most important nutrients for rebuilding - that would make sense...

 

:)Parker

[[Ma...]]

Hi Parker,

 

This is really perhaps the best thread I've read on this site.  Thank you so much for sharing your knowledge with us.  You're gonna be famous now on BB   I think the multi-media presentation is a fantastic idea and I hope you do it and somehow we all get to see it.

 

My withdrawal started with being put on Lamactil, which caused intense anxiety.  I believe it really ramps up your glutamate.  Your explanation made the whole glutamate issue a lot more clear to me.

 

I have a question about this sentence:

 

"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.)"

 

Can you elaborate on that?  When you taper, does any function get better as you put less drug in your system?  Are you helping your body, does your body start the process of returning to normal while tapering?  This is confusing to me.

 

This is really a fantastic thread, lots of comforting words in this, and I think that was your intention, you achieved that.

 

Mairin

 

 

[[pa...]]

Hi Parker,

 

This is really perhaps the best thread I've read on this site.  Thank you so much for sharing your knowledge with us.  You're gonna be famous now on BB   I think the multi-media presentation is a fantastic idea and I hope you do it and somehow we all get to see it.

 

My withdrawal started with being put on Lamactil, which caused intense anxiety.  I believe it really ramps up your glutamate.  Your explanation made the whole glutamate issue a lot more clear to me.

 

I have a question about this sentence:

 

"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.)"

 

Can you elaborate on that?  When you taper, does any function get better as you put less drug in your system?  Are you helping your body, does your body start the process of returning to normal while tapering?  This is confusing to me.

 

This is really a fantastic thread, lots of comforting words in this, and I think that was your intention, you achieved that.

 

Mairin

 

Hi Mairin,

 

Thank you.

 

The sentence you are referecing about "healing while you taper" is based on the premise that if you are able to slowly cut the use of benzodiazepines down at a rate that allows your brain to "heal GABA" while you are taking the time to reduce the dose, you are likely going to have an easier adjustment along the way.  I DID taper like this, but I had an awful time after my last benzo.  I may have gone too fast, or it may have been inevitable for me to have this experience.  We are all different. 

 

Oscar is a buddy on here who is MICROtapering benzos. Where I cut a whole .5mg of valium at a time, he is cutting minute amounts and holding in between for longer periods...thereby giving his body more time to adjust. I didn't do this, so I can't speak to it, but in general, it is regarded to be safer to taper down off benzos than to "rapid taper" or "cold-turkey".  I CAN speak to my cold-turkey. It was the most awful thign I have even experienced in my entire life, and I truly cannot imagine anything worse. However, both people who taper and c/t  heal given time.  There doesn't seem to be any rhyme or reason as to how soon someone heals based on the benzo they were on, the amount, the dose, or the tapering.  Everyone is so unique.  But people on high doses have healed. People on high doses for long times have healed.  Given time, we heal.

 

How people experience symptoms in a taper is all unique, too. Some people "feel better" as they taper until a lower dose. Some people "feel bad" throughout the taper. Some people feel bad, then hold at a dose, then continue, then hold, etc.  There IS likely healing going on throughout a taper - but the extent to which people can PERCEIVE that healing differs per person - so while one person may remain fairly functioning, it seems as if others are not. Some people can work. Others cannot.  It is just so individual. But yes-the general consensus in research seems to show that tapering is a successful way to reduce benzo dose over time with the least stress to the body (given the alternative of cold-turkey). 

 

I dont' know if you've ever seen this article on benzo withdrawal syndrome from wikipedia. But it is a pretty great accumulation from 121 different studies (all listed at the very bottom of this document). It gives a pretty detailed description of what happens in recovery based on research.  Still - keep in mind, we are all different - and nobody here seems to fit a mold.   AND nobody here gets every single symptom (but I was close!)

Don't let anything you read "scare you" needlessly. Things scared me a lot in early recovery - but I was scared of anything anyhow. 

The cool thing is, we DO heal.  The end result is a good one. 

Hope this helps. 

 

http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome

 

:)Parker

 

[[Be...]]

Parker,

 

i think that this an amazing thread - it has helped me a great deal - in your response to Vertigo - I found the information that I was looking for about taste and smell.

 

i think that some posters that have not lost their sense of smell, taste and pain perception - would have a difficult time relating to this thread - try living without this for while along with so many other sxs and a person will soon find out how disorienting this is.  just as i having lost my sense of smell, taste and pain perception have a very difficult time relating to someone that is mirco-tapering w/ few sxs or someone that did an Asthon style taper w/ few sxs - ie increased anxiety or perhaps insomnia as their only sxs.

 

if anxiety and insomnia are the only two sxs - it would be very easy to establish a "baseline" - ie - did i sleep more hours, did i sleep deeper

 

i don't have a established baseline - just too many sxs. i think that my mind/brain and body are headed that way though.

 

your thought on sxs and  no stimuli  - answered my question on baseline - i now get why i am having difficulty relating to posts where people talk about increased stimuli and sxs reving up - my sxs are just so bad all the time with very little stimuli to my environment. it was why i was looking at ways to further reduce what little stimili that i have in my environment - a chance at reducing my sxs.

 

i am sure that you understand what it is that i am talking about - though a poster that doesn't have much in sxs would only relate to increasd stimili - you have to be able to "put yourself" in another's shoes to understand and some people just do not have that ability and that is ok.. we are all different.

 

i hope that  i have expressed my thoughts better today than yesterday as it was a very difficult day.

 

i hope and pray to regain my sense of smell - i am learning to "accept" and not be upset about the simple fact that it is gone.. and worry about what is happening to make it be gone. though, of all things i would like back - it is pain perception.

 

your posts - have reduced my worry and fear - thank you.

 

(as you probably guessed - i am trying to figure out "baseline" and lol everyone is helping me along - this is progress!!!!)

 

if the brain cog would just pass for a bit.. i would be so happy.

[[aD...]]

Parker, I don't normally post on here but this thread is so exceptional that it deserves an exception.

 

Your post describes the neurobiology of benzo withdrawal in such an easy to read yet comprehensive manner. Truly a rarity to have such a detailed yet accessible explanation.

 

Thank you so much. The effort you dedicated to this really shows. 

[[zo...]]

Hi Parker!

 

Thank you for some useful posts in this thread and in others. Although you have been posting for a while, I haven't come across your posts. (I'm still working my way through a backlog of threads and my brain fog makes me much slower than I used to be at absorbing ideas.)

 

Over in the "Chewing The Fat" forum, we're puzzling in one thread exactly where healing from benzos is coming from.  Perhaps you'd like to look thru that thread and post any observations?  I suspect you may have some useful observations. This is the thread:

 

"How come GABA does not return to homeostasis even with slow taper? "

http://www.benzobuddies.org/forum/index.php?topic=66069.msg883269#msg883269

 

-Zoner

 

Thank you for the invite, Zoner! This gives me something to read tomorrow and delve into.

 

:)Parker

 

 

Parker, it would be interesting to read any observations you have to make about that thread I mentioned.

 

I like it that you approach benzo withrawal from a more distinctly neurological point of view ("brain damage") than a psychiatric one ("mood disorder". "extreme anxiety" etc).  IYSWIM.  I'm waiting for someone to champion psychometric testing as a way of quantifying the deficits in cognitive function due to benzos. I has such tests and they were outstanding at highlighting my neurological problems.

 

-Zoner

[[ve...]]

c

[[pa...]]

Hi Parker!

 

Thank you for some useful posts in this thread and in others. Although you have been posting for a while, I haven't come across your posts. (I'm still working my way through a backlog of threads and my brain fog makes me much slower than I used to be at absorbing ideas.)

 

Over in the "Chewing The Fat" forum, we're puzzling in one thread exactly where healing from benzos is coming from.  Perhaps you'd like to look thru that thread and post any observations?  I suspect you may have some useful observations. This is the thread:

 

"How come GABA does not return to homeostasis even with slow taper? "

http://www.benzobuddies.org/forum/index.php?topic=66069.msg883269#msg883269

 

-Zoner

 

Thank you for the invite, Zoner! This gives me something to read tomorrow and delve into.

 

:)Parker

 

 

Parker, it would be interesting to read any observations you have to make about that thread I mentioned.

 

I like it that you approach benzo withrawal from a more distinctly neurological point of view ("brain damage") than a psychiatric one ("mood disorder". "extreme anxiety" etc).  IYSWIM.  I'm waiting for someone to champion psychometric testing as a way of quantifying the deficits in cognitive function due to benzos. I has such tests and they were outstanding at highlighting my neurological problems.

 

-Zoner

 

Thanks, Zoner. I went and visited and read the first few pages.  To be honest- I am really not sure why things don't work out in a long taper for some folks and not others. But like another buddy on that thread mentioned, some folks can jump off relatively c/t and do okay.  And in a world where one person can do a long, slow taper and still have PAWS - whereas another can do a c/t and have no withdrawal or PAWS whatsoever - there exists an entire continuum of mystery.  WHY this occurs is such a huge question with so many factors (benzo type, length of use, dose, dose frequency, rate and length of taper --- and on and on). But my best guess as to the cause behind this is simply the genetic differences between people.  That's so vague, I know, but my guess is that even if you ran an experimental test group with 100 patients taking 10mg of valium everyday for a year, and then put half through an identical controlled taper, and the other half through a cold-turkey, you'd find close to the same radical spectrum we see on benzo-buddies.  Of course, that study will never happen because of the potential harm involved, but my guess is that this continuum would exist based on th fact that invidividuals just have very different neurobiology.

 

What I think WOULD be very interesting and helpful is if studies could actually take a look at the process of microtapering and "holding" when symptoms occur - as some of the buddies are doing on this site - to see if a slow, patient-centered (not calendar-driven) taper taking into account the patient's intuitive "readiness" to cut a dose further had an overall greater success in terms of symptom severity and length of PAWS.  If that kind of thing could be studied through the collection of taper data and patient-rated feedback, while it would not answer the question "why" it could at least help identify more conclusively the most successful ways to withdraw with the least amount of symptoms.  To me - that research would be practically helpful.

Still - how do you account for knowing if the person who is successful in a microtaper would have simply been successful with a cold-turkey?  It has GOT to be personal genetics - and genetics definitely has the potential to uncover this - but it seems unlikely to happen soon - if not for scientific barriers, for financial ones. Who's gonna pay for it?   Still - I think it's got to be the differences between our brains that make our individual reactions such a mystery.  At any level more granular that that, I just dont' have the scientific background to make a more specific hypothesis. 

 

 

:)Parker

[[...]]

Parker, sometimes I can feel love towards my husband for example but it only lasts a few minutes. Then the positive emotion goes away or is replaced by a negative emotion like anger or fear for no reason. Do you know why this happens? Is my brain running out of the necessary neurotransmitters like serotonin, dopamine, etc. to make the emotion stay? What I cannot understand is why it changes to a negative emotion all of a sudden

 

The same thing happens to me, Mmir. Makes me feel like a crazyperson. I don't know exactly why. Yours is a plausible explanation for sure. Also - I look at it like I'm getting little "seizures" in differnet parts of my brain... like anger, irritation, bad feelings out of nowhere.  Could be lack of serotonin, or could be those parts of the brain being electrically "hit"...or both and more.  When this happens, I am beginning to recognize it's not logical, but physical. I often retreat to a place by myself, take my ipod, play some music or a youtube video that makes me sentimental -then I cry - and between the release of endorphins and the clearing of the chemical "waste" in my brain, I am able to re-establish the decent mood. But this ability is very recent for me.  Other times, if I haven't slept well or gotten enough sleep, I am just stuck in that mood until I am better rested. 

 

:)Parker

parker, thanks for your response. Makes sense...to me it's possibly a combination of both factors: lack of neurotransmitters or proper communication between neurons to create the good emotions and at the same time misfiring from primitive areas of the brain (fear/anger centers).

 

So sorry you're going through the same. I too try to tell myself that this is physical, not logical feeling, but OMG does it take some effort to convince myself of that.

[[er...]]

Parker

GREAT  POST  , this will help many , many people

THANK YOU 

Erika :smitten:

[[pa...]]

Parker, sometimes I can feel love towards my husband for example but it only lasts a few minutes. Then the positive emotion goes away or is replaced by a negative emotion like anger or fear for no reason. Do you know why this happens? Is my brain running out of the necessary neurotransmitters like serotonin, dopamine, etc. to make the emotion stay? What I cannot understand is why it changes to a negative emotion all of a sudden

 

The same thing happens to me, Mmir. Makes me feel like a crazyperson. I don't know exactly why. Yours is a plausible explanation for sure. Also - I look at it like I'm getting little "seizures" in differnet parts of my brain... like anger, irritation, bad feelings out of nowhere.  Could be lack of serotonin, or could be those parts of the brain being electrically "hit"...or both and more.  When this happens, I am beginning to recognize it's not logical, but physical. I often retreat to a place by myself, take my ipod, play some music or a youtube video that makes me sentimental -then I cry - and between the release of endorphins and the clearing of the chemical "waste" in my brain, I am able to re-establish the decent mood. But this ability is very recent for me.  Other times, if I haven't slept well or gotten enough sleep, I am just stuck in that mood until I am better rested. 

 

:)Parker

parker, thanks for your response. Makes sense...to me it's possibly a combination of both factors: lack of neurotransmitters or proper communication between neurons to create the good emotions and at the same time misfiring from primitive areas of the brain (fear/anger centers).

 

So sorry you're going through the same. I too try to tell myself that this is physical, not logical feeling, but OMG does it take some effort to convince myself of that.

 

Yes - it's hard to do sometimes.  As I got to the point where my waves seemed to be shorter and a little less frequent, it became easier to "talk myself through them" because I intuitively knew I was going to get a break soon - and that the wave wasn't going to last long. But before this,  - -- well - I wasn't able to think or type all this before this.   So yes - it's hard, but it seems to get easier as we get some relief. Other buddies ahead of me have told me it gets even easier as you really do have a return of function. I'm somewhere in between right now and hanging on to those sweet words... 

 

:)Parker

[[pa...]]

It's NOT all in your head!

 

I have been some research on PubMed.org which is a digital archive of all the medical science journals and their publications and articles (Instead of going to a university library to xerox a journal article, you can just go here and search just about anything). You dont' get the "whole article" for free - you only get the "abstract" - or the summary of it.  (You can get the whole thing, but you have to pay for it.

 

Anyhow - I'm starting to build my research for potentially making a huge multi-media presentation of everything WE KNOW here that is happening to us and how REAL it is.

 

Here is just one abstract I really liked....

Are we just anxious?  Nope.  We have something different due to the science...

 

Well....

 

DUH!

 

 

LOL!

 

Acta Psychiatr Scand. 1990 Aug;82(2):165-8.

 

The prolonged benzodiazepine withdrawal syndrome: anxiety or hysteria?

 

Higgitt A, Fonagy P, Toone B, Shine P.

 

 

Source

 

St Charles Hospital, London, United Kingdom.

 

 

Abstract

 

In an attempt to establish whether prolonged withdrawal symptoms after stopping intake of benzodiazepines is caused by return of anxiety, hysteria, abnormal illness behaviour or the dependence process itself producing perhaps a prolonged neurotransmitter imbalance, a group of such patients suffering prolonged withdrawal symptoms (PWS) was compared on a range of psychophysiological measures with matched groups of anxious and conversion hysteria patients and normal controls. It was found that the psychophysiological markers of anxiety were not marked in the PWS group; nor were the averaged evoked response abnormalities found to be associated with cases of hysterical conversion in evidence. The PWS group were hard to distinguish from normal controls on the basis of psychophysiological measures and thus it was felt to be unlikely to be an affective disturbance. It was concluded that PWS is likely to be a genuine iatrogenic condition, a complication of long-term benzodiazepine treatment.

 

[[ih...]]

Great find, Parker, if only more mds were conscious of this, mine is fantastic, though.

 

Based on a sample size of one, with major confounding variables, I conclude that some sort of taper, (didn't microtaper so can't say), is the way to go. After CT, it took the best part of a year to recover, whereas after taper, I am well on the way after only weeks.

 

Completely agree that a meaningful study on taper would be useful but veryi difficult to design for the reasons you raised. Maybe now this is increased interest in getting people off bzs, due to the dementia risk, there will be more research interest as a flood of withdrawers hit their mds offices.

[[sa...]]

Thank you so much Parker for such thought provoking discussion and information.  I've stayed away from bbs for a long time in order to focus on other things, but I now that I've been missing out!  Logic is certainly reassuring at times like this. 

 

Earlier some had mentioned the possibility that the MTHFR gene mutation could be the reason why some of us have a much harder time withdrawing from benzos.  I think that is definitely a possibility.  My ND feels that I may have this gene mutation, probably double marker, although I haven't been tested.  But I wanted to mention that the treatment for this mutation is not necessarily entirely benign, especially for extremely sensitive individuals.  Methyl Folate in large doses (and in my case small ones) can increase the risk for seizures, and can apparently also increase the risk of colon cancer.  Some doctors feel that giving the methyl folate concurrently with methyl B12 decreases the risks associated with it's use. 

 

But that was not the case in my situation.  After several weeks of taking both methyl folate and methyl B12, I began to have what I believe were mild "drop seizures".  They were very frightening, and left me extremely amped up and anxious afterward.  At the time, I had no idea what was going on, but I knew it must have something to do with the pills, so I stopped them, and immediately began to feel better.  My nervous system was, however, left in a terrible state.  I eventually ended up so hysterically miserable that I spent 8 days on the psych floor at the hospital.  That's how, despite already having healed from a Xanax CT years earlier, I ended up on the benzo I'm tapering now. 

 

I know this is slightly off-topic, but since MTHFR was mentioned earlier, and I saw that some were interested in getting tested, I wanted to relate my experience.  I feel that if a person is still experiencing significant symptoms after benzo withdrawal, treating the gene mutation could actually make things much worse.  A lot of people report feeling much better on the treatment, but it seems that just as many if not more report feeling much worse.  I believe it's partly a consequence of a rapid detox which begins once the methylated forms of the B vitamins are introduced.  Detox is obviously necessary, but if this treatment is undertaken, it needs to be done very slowly and cautiously. 

 

If this gene mutation is suspected by anyone going through withdrawal and is still highly anxious, I would suggest waiting for more healing to occur, and to meanwhile eat a very clean, nutritious diet.  I myself have benefited greatly by eating a sugar, gluten and casein free diet.  I also eat naturally fermented sourkraut for the enzymes and probiotics, drink lemon, eat lots of vegetables, especially carrots and celery, and take magnesium and vitamin C.  I know this regimen would not be tolerated by everyone.  We are all so different.  But there are ways to lighten the load on our detox pathways that are gentle enough even for the most sensitive of us. 

[[Ma...]]

Great great posts everyone.

 

I can almost guarantee as much as all this is kind of disregarded and not looked at with seriousness like other diseases; in ten years it will. Think about Alzheimer's disease. it was not talked or funded until Reagen. I bet in the next 10-15 years when something like Benzo WD hits a real famous person or politician, then I bet some serious funding and research will go into it. Probably more dtiff regulation on prescribing them as well.

[[Tu...]]

Excellent stuff!

[[li...]]

Hi Parker and thank you for your reply.  Along my search to help my GI, I did try many probiotics.  My first step was to cut out all processed food, which was easy because I became intolerant to most of them.  I dabbled with enzymes and colon cleanses to try to help move things along, as my GI seems to shut down.  Then I used natural anti-fungals to help kill any bad bacteria in my gut.  Then I tried to repopulate the good bacterial with probiotics.  However, I was intolerant to most of them.  Finally I found a great one and took that for many months, but just like foods, my body turned on it and treated the probiotics like a foreign invader and I was no longer able to tolerate any of them.

 

The same happens with food, supplements or prescriptions.  I know right away if I can't tolerate them, because withdrawal symptoms flare everywhere, but the few things I can take, after a while, my body rejects them and I have to cross them off the list.

 

As complex the brain, the connection between the brain and the GI is also very intricate.  I have seen so many changes in my GI, kind of like you described what goes on in your brain.  I am very curious to see how this will all play out and if my GI can fully return to the normal function it was.  I never any restrictions prior to withdrawal, except for caffeine, so it will be interesting to see what I am left with.

 

Thanks again for this very interesting post!

[[ve...]]

Interesting post about the brain, Parker.  You alluded in some posts to the broader nervous system which I think is an important aspect of healing as well.  In other words, the CNS (Central Nervous System) is comprised of the brain and spinal cord. The spinal cord is largely responsible for transmitting nerve impulses from the peripheral nervous system back to the brain for processing. I think a large part of healing in the second year off the benzo involves the overall nervous system, of which the brain is a part.  For example, some have reported ongoing tingling, burning or other nerve sensations or fatigue into the second year despite having noticed improvements in cognitive functioning. other symptoms and/or perhaps some improvements in mood.  In my case, for example, I felt 85% healed by a year off but the last 10-15% of healing seemed more stubborn, more subtle and almost broader based.  Some have posted feeling like their nervous system was more "vulnerable" to stress.  Perhaps the nerves or transmission of them remain sensitive despite the brain being mostly healed?  Any thoughts? 

 

Vertigo

 

Hey Verti,

 

I have a few ideas about all of this.... in no certain order...

 

I feel like - at least in my case - the healing that is going on truly "IS" linear - but the perception of it is not.  For example - it's not as if the skin nerve endings just are "broken" and then finally begin to register pain at some point a year off because that is when they finally begin to heal. My guess is that they are healing all along - and that for whatever reason -  we are finally able to perceive the sensation of that healing further down the line....

 

Example: -- I've seen people who have horrid mental symptoms (I was one of them) in the first year - and as a part of that, I believe I was literally unable to process many sensation cortically.  I couldn't smell, taste very well, feel temperature accurately on my skin.  It is likely that I also just couldn't process the pain that "may have" been present, but which I was unable to "feel" with the cortical glutamate storm going on.  It's almost like I sense things coming back - smell, taste, feeling - and THEN I began to feel the pain.  In my particular case, I just dont' think I was registering much of anything- and then I began to register everything.  So - it may be that there is a grey matter processing issue in the beginning.

 

I know that in the PNS, healing can take a good year - but those are cases where a nerve axon is cut or damaged and has to grown back distally, etc. etc.  (I remember SOME of this from school, but not to great detail.)  But in our case, there isn't that type of physical trauma - so I can't really guesstimate why the PNS seems to take so long to register symptoms from a typical PNS-healing model.  That's why I tend to lean towards the idea that "we dont' feel pain until we are truly able to process it again".  This may be why folks with few mental symptoms out of the chute have physical symptoms right away - and why those of us with major mental symptoms have a latent physical response - due to lack of initial processing of physical sensation.  BUT - this is just SUCH a rough theory - and it's only based on my own experience and a bunch of guessing.

 

I also dont' quite know what to make of the ongoing overly sensitive nervous system.  But some of this, in my experience, seems to be due to the speed at which I can release and absorb GABA.  A buncha stuff is "better" up there.  But I notice things like this:

When I go outside on a sunny day and come back inside, my eyes take QUITE A BIT longer to adjust to the inside light than they ever used to prior to this experience.  They DO adjust - but what might have been a 20 second process currently takes about 60 seconds. IN the meantime, colors look washed out for a good minute after I come inside.  I surmise that what is happening is that GABA is required to "dampen" the nerve impulses that are signaling "sunlight sunlight sunlight" to the brain.  And the dampening DOES happen, but it takes longer than it used to. (I'm not healed yet.) This is just a visual thing, but if that is happening all across the brain, it may be that a small amount of stress - which used to be able to be "counteracted" in "real time" by GABA - cannot YET be handled as quickly - and so instead of an immediate GABA response that curbs stress -you get a small delay - which is just enough to allow the parasympathetic nervous system to allow too much adrenaline into the system - and voila - a little stress equals a disproportionate physical response to the size of the trigger. But again  - just an idea running around in my mind.  I imagine that as time goes on and helaing continues, the brain heals and gets closer and closer to handling stressful stimuli in a real-time manner that we are accustomed to pre-benzos.  If GABA can come in and dampen a stress response prior to the unnecessary release of a big adrenaline, then what you would get is a little stress - yes - but a little stress that doesn't cause the major upheaval that still occurs while the healing is still happening. 

 

Another way to look at this would be that during latter stages of recovery, the nervous system is mostly healed perceptively in the everyday nature of things, but truly- at a deeper level - is NOT healed - and is still requiring more time to come to a point of full healing. Still - I bet this feels a whole lot better than to be sitting on the couch early on and reacting even in the presence of  NO stress.    I'm still in that boat. My nervous system is still reacting willy nilly without any stimulus whatsoever... but at least the reaction is less than it used to be.

 

The hierarchy I've experienced has been the following:

 

acute withdrawal: major nervous system reaction 24/7 in the presence of no stressful stimuli

early recovery: 3-6 months - same

6-8 months: nervous system begins to calm down - reacting 80% of the time in the presence of no stimuli, but beginning to exhibit calm the other 20% of the time

8-10 months - reacting  to nothing 70% of the time (but the reaction is much less intense), calm 30% of the time

10-12 -

12 months - reacting 50% of time (but of mild intensity), other 50% of time, establishing equilibrium stress-wise

 

I think I am not quite to the point in healing that you were at by one year, Verti.  It's taking me longer. I think this is the case for many buddies. But I think we all probably follow the same pattern, if even in a completely unique timeline.  We all go through a phase where our bodies are just flipping out just sitting on the couch. Then over time, the calm begins to settle on us, but we are still flipping out.  Then eventually we are calm most of the time but sensitve to ANY stimuli, and finally, able to handle "real life" in "real time" again, including stress, coffee, and a little wine. (I hope!)

 

Just some of my ideas.  What do you think?

 

:)Parker

 

Thanks for the lengthy response Parker.  Yes, I agree that in the period of about 10-18 months, at least for me, the nervous system was healed to a point where it was not reacting so much without a clear stressful stimulus.  However, smaller amounts of stress would elicit a stronger reaction than had been prior to the benzo.  I guess that might be what some refer to as a vulnerabity to stress in the second year off.  Also, some have reported having a certain degree of apathy or lack of motivation at times in the period of 12-18 months (still considered non protracted).  I can relate to some degree with this, as I had more fatigue come on in the second year.  In fairness though, I had some fatigue issues prior to benzos, yet this process can really wear you out and some have reported it being or feeling like a "trauma".  Did you work with any PTSD patients or what are your views on this process in terms of trauma?

 

  Interestingly, I did not have issues with taste or smell, but you, BenzoJax and others have reported this as a symptom.  In terms of the issue with sunlight, I have read that certain a/ds have a potential of sensitivity to sun.  The one I recall reading about was the herbal St. John's Wort, but it may be true of others.  I don't know if that would possibly be a side effect of remeron, effexor or other SSRI or SNRI medications.  Ok, did a quick search and it looks like tricyclic antidepressants do have sun sensitivity as a listed possible side effect as well as paroxetine (paxil).  Not sure about remeron.  Below is one study that was done that mentions a case of sun sensitivty with paxil.  If you look up tricyclic antidepressants though, suns sensitivity is listed. In any event, there may be some relationship to serotonin deficiency or other neurotransmitter activity with the sunlight issue.

 

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2230.2009.03484.x/abstract

 

My experience was less linear than you described your situation.  I found that there were several months of progress and then setbacks, particularly as I became more active and in some cases after I went back to some old habits in terms of diet and exercise (for example- eating less healthy, adding alcohol back in moderation, exercising more or arguably too much...).  When stressful circumstances appeared, my response was more intense than I expected it would be at 18 months off, leading me to believe that my CNS was still ultra sensitive to heavier than normal stress, whereas I might have otherwise thought of myself as just about healed.  This continued to approximately 2 years.  That being said, I was functional and in many regards better than before the benzo in terms of many measures such as sleep, cognition, mood, anxiety... just more adrenalin rushes to heavier than usual stress in the second year.

 

Vertigo

 

[[pa...]]

 

Thanks for the lengthy response Parker.  Yes, I agree that in the period of about 10-18 months, at least for me, the nervous system was healed to a point where it was not reacting so much without a clear stressful stimulus.  However, smaller amounts of stress would elicit a stronger reaction than had been prior to the benzo.  I guess that might be what some refer to as a vulnerabity to stress in the second year off.  Also, some have reported having a certain degree of apathy or lack of motivation at times in the period of 12-18 months (still considered non protracted).  I can relate to some degree with this, as I had more fatigue come on in the second year.  In fairness though, I had some fatigue issues prior to benzos, yet this process can really wear you out and some have reported it being or feeling like a "trauma".  Did you work with any PTSD patients or what are your views on this process in terms of trauma?

 

  Interestingly, I did not have issues with taste or smell, but you, BenzoJax and others have reported this as a symptom.  In terms of the issue with sunlight, I have read that certain a/ds have a potential of sensitivity to sun.  The one I recall reading about was the herbal St. John's Wort, but it may be true of others.  I don't know if that would possibly be a side effect of remeron, effexor or other SSRI or SNRI medications.  Ok, did a quick search and it looks like tricyclic antidepressants do have sun sensitivity as a listed possible side effect as well as paroxetine (paxil).  Not sure about remeron.  Below is one study that was done that mentions a case of sun sensitivty with paxil.  If you look up tricyclic antidepressants though, suns sensitivity is listed. In any event, there may be some relationship to serotonin deficiency or other neurotransmitter activity with the sunlight issue.

 

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2230.2009.03484.x/abstract

 

My experience was less linear than you described your situation.  I found that there were several months of progress and then setbacks, particularly as I became more active and in some cases after I went back to some old habits in terms of diet and exercise (for example- eating less healthy, adding alcohol back in moderation, exercising more or arguably too much...).  When stressful circumstances appeared, my response was more intense than I expected it would be at 18 months off, leading me to believe that my CNS was still ultra sensitive to heavier than normal stress, whereas I might have otherwise thought of myself as just about healed.  This continued to approximately 2 years.  That being said, I was functional and in many regards better than before the benzo in terms of many measures such as sleep, cognition, mood, anxiety... just more adrenalin rushes to heavier than usual stress in the second year.

 

Vertigo

 

Hey Verti,

 

No -  I never have worked with PTSD patients. I have never heard anyone describe this as trauma, but I can certainly understand that.

You probably have articulated with many more people at this point than I have. I am just a year off -and I am still not healed, and I'm just starting to emerge cognitively in ways that remind me of my old self. It's a process- but I can feel it slowly ending.

 

I DO have days where I feel TOTAL and utter fatigue and yes- I feel really sick on those days - unmotivated, anhedonia, tired, all of it. 

In the last week along, on Wednesday I felt wonderful, lifted weights, and did cardio. And yesterday, just 2 days later, I was totally exhausted, headache, and barely had the energy to drive 2 miles to pick up my kids from school. Slept 10 hours last night and I'm back to where I could lift weights today. So I marvel at the variability of this in healing. Still - even on the tired days, I feel like I got the "411" on this recovery now.  I know what's going on - and it ain't gonna get me.

 

I am starting to wonder if the variability of some of my mood and fatique symptoms in this point in recovery isn't caused at least to some degree by the quality of sleep I'm getting.  (The quality of sleep is dependent on the greater scope of recovery, but in general, getting enough good sleep seems to help me feel a lot better than on nights I just don't.)

 

As far the sun sensitivity - are you referring to the skin sensitivity that can occur with a/d's and the sun?  I CAN say that due to norepinephrine, lights can also look "too bright" when taking anything that increases this neurochemical, and understandably.

But the lighting issue I was referring to in my original post regarding coming in from the outside and it taking several minutes for my eyes to adjust is purely benzo and I believe, GABA-related. For one, I'm not on an a/d anymore and haven' been for about 2 months. And two - this is just "different".  It truly is as if my GABA affinity is a) not yet strong enough and b) not yet fast enough to help my eyes adjust from a very bright outdoor environment to a very dim indoor environment.  Colors look too yellow/green once I come in from the outside - and about a minute later, the color all begins to come back and look rich and warm like it's supposed to. Like I said, this happens to ANYONE after UV light exposure - but the adjustment back to normal vision is SO quick you may not notice it. In benzo healing, the adjustment takes a good minute - and so I notice it indeed. And it's a sign to me that many, many brain and body functions can be involved in this.

 

I am so excited to be overall improving. I'm not there, but I'm getting to that hope stage. I really am thinking another year - but at this point, I feel a little more able to cope - and that is a gift itself.

 

This is long.  It's a big damn deal.   I'll be glad when it's done. 

 

:)Parker

[[tu...]]

Parker:  This explanation means more to me than you can know.  Thanks for taking the time to break this down.  What a fantastic piece of validation!!!  This will help so many people.

[[Pe...]]

Parker,

 

This is one of the most informative write ups I have ever read, could you tell me how many of these chemicals can be detected in a blood sample? Not sure but are some chemicals unable to be detected in blood?

 

Your write up delivered hard to understand material in a manner that even I could comprehend it!

 

Thanks

[[pa...]]

Parker,

 

This is one of the most informative write ups I have ever read, could you tell me how many of these chemicals can be detected in a blood sample? Not sure but are some chemicals unable to be detected in blood?

 

Your write up delivered hard to understand material in a manner that even I could comprehend it!

 

Thanks

 

Hi Petula,

 

I don't know. I understand some things about neurophysiology but I by no means a neuroscientist. All I know are things I have learned, and compared to someone who works with blood and labs and neurology, my knowledge is fledgling.

 

I hope I am not somehow giving the impression that I am any sort of expert. I'm just another buddy trying to offer help and hope. I have theories and ideas just like all of you guys. At the end of the day, I am always learning and enjoy learning. But I am nowhere close to having all the answers. And many of you are probably healed more than I am So I find it fun to share ideas and theories, but I am not a benzo expert.

 

We are all in what I feel is a burgeoning time in history of benzo use...where JUST enough has been written and published, where videos are on YouTube..and the story is starting to get out there. There is still so much we don't know. But that's because of one simple fact- this is a man made substance that does not belong in our body everyday. And it's not easy to figure out WHY it does what it does. We have a hard time in science understanding the NATURAL physiology and NATURAL genetics occuring, much less the addition of a substance like benzos into that mix. But at some point, in the future, it's my guess that they won't spend hard earned research dollars figuring out WHY.... But that they'll just giving these pills out beyond what is necessary for epuleosy and anesthesia.

 

We don't have to know WHY not to drink terpentine. It's just not good for us.

Once we learned that thalidomide was causing birth defects, we just quit making it.

Some vaccines have been discontinued because they caused damage to human beings.

 

There will come a time where enough awareness will cause a change in the way people use benzodiazepines.  They are a good drug for a few specific causes. They can be honored for those uses. They are not good to take regularly as many of us have learned.

 

It's not fair we have had to endure this.

It's not fair that children had to be born without limbs whose mothers took prescribed thalidomide in pregnancy. But we are those people who can make a difference and we will.

 

Heal first. Focus on recovering. So many questions are so good. They will drive the machine that stops this mess eventually. Today, let us heal and pull together and love one another and give that our very best focus.  We are ALL getting up and out of this. If you can't feel it yet, don't be scared its not happening. I could barely feel any change unless I looked months and months behind me. At a year, I can finally tell. 

 

Sometimes I just did better not to think about all this and get off the forum and watch tv.

I watched too much tv and played word games all year. Sometimes the best we can do is mindless enjoyment and let our brains rest. If there is anything I can pass on, it's that I don't know the answers anymore than you guys do.

First we just gotta take care of one another and get better through this mess.

 

Love you all.

:)Parker

[[ve...]]

Hi Parker. Tried to respond to your PM but your inbox is full.

[Guest [Jo...]]

Excellent post and thread, Parker!!  Certainly validates the "healing in progress" views we've gotten from both Heather Ashton and Bliss Johns.

 

I'm curious if you have tinnitus, as many of us do, and wonder what your "take" on it is.  This and the accompanying hyperacusis and "head noise" are my principal obstacle at 13 months off.  It was diminishing until I had a violent reaction to a single .1mg dose of clonidine 7 weeks ago which revved it up big time again.  I'm finally emerging from that setback; the tinnitus, etc. has calmed down a bit.  I am confident it will subside, but I also know it can take an extremely long time.  Not sure what to make of the "head noise" other than, again, a symptom of healing.

 

To echo many other responses, thanks for taking the time to write your initial post.  A tremendous contribution to both this forum and it's members!

 

 

Joe

[[he...]]

http://www.mthfrsupport.com/1/post/2012/10/why-mthfr-is-only-a-part-of-methylation.html