Post Benzo Protracted Withdrawal Support Group

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Thank you Still Alive for the GI info., greatly appreciated.  I am so sorry that you are still struggling.  At first when you resonded to people I thought you were almost healed, and giving us your experiences.  I see now that your GI is better, but you are still symptomatic in other areas.  If there is anything I can help you with, please let me know.  I have experienced more symptoms than I could list.

 

Besides the stomach issues, I've had weird leg sensation over the past months.  I've had inner vibrations the wholed duration of my withdrawal, but they have settled in most areas.  I notice now that the vibrations hit the weakest points of my body now, which is actually a good indication of where withdrawal is being focused currently.  However along with vibrations on both legs between m knees and ankles in the muscles on both sides of my chins, I also have tenderness and they hurt when I rub them.  I assume it's the muscles because and I flex my feet back and forth I can feel the muscles pulling and they hurt.  This is new for me.

 

Also, I posted above that I was 21 months out.  Vancouvergirl reminded me that I made a mistake on that.  I usually calculate in years.  I am currently 2 years and 10 month off completely, 4 years since I first c/t, but I went back on and tapered for 18 months.  So in months, I am 34 months off klonopin.  However I am 22 months off of Flexeril that I only took for 2 months when I developed bad head spasms.  It was the addition of the Flexerill years after benzo withdrawal started that triggered mental sympotms I never had before and all my GI issues starting with sugar intolerance.

 

So, even though it's been 34 months since I stopped Klonopin, it is the 22 months off of Flexerill that I've been suffereing with digestive issues. 

 

Stilll Alive - you mentioned that you continued with GI issues for about 2 years after you were off, which would keep me in that time line as I am about to approach 2 years from the onset of the GI stuff.  I am suppose to get a endoscope and colonoscopy this week, but I am going to postpone it again, I believe.  I just can't bring myself to go through with it and get the anestesia, as it seems everything I take makes me sicker.  I only pray that I am not overlooking somehting worse.

 

Thank you all for your encouragement.

[[St...]]

Hi VCG..........

 

this is a continuation from my previous post.  I hope this isn't too confusing to read but it's the best I could do via utilizing dif. coloured text.

 

 

 

You wrote: I have napped just a few times this month. Finally. But then I can't sleep all over again. I like what I am seeing in your perhaps sleep cycle changing though. Mine was trying this month, 4 longer sleeps but still choppy with 5 wake ups and light. But like you said, signs it will be restored. (Exhausting though for all of us isn't it?)

 

Oh yes, the sleep issue can be all over the place, shifting back and forth.  Just when one thinks one is making progress, all gets lost again.

 

Yes, indeed it is exhausting although, as you begin to sleep DEEPER, 4 or 5 hour night sleep will feel so much more restful than 4 or 5 hour sleeps you had months earlier.

Also, napping during the day may become more frequent but I go with it since, rest and sleep is critical to recovery.  Although one cannot plan anything since, one never knows what time one will have to go for a nap.

 

I have situational depression. Long time to be altered and everyday is the same still.

In my situation is a combo of WD induced and real life circumstances. 

I was alone till 14 1/2 months and it was hard.

 

Oh my gosh………I’m so sorry.  Believe me, I know how painful it is go through such mostly alone.  It’s traumatizing if one does not have anyone to rely upon or to assist with daily chores etc, never mind emotional support.

 

But then when I relocated to recover, it seems it was easier in that I didn't feel self conscious around strangers. My mother's finacee. Catch22. Crying jags I'm familiar with. What's with that? Man, this drug is hard on the brain. It's so a side effect. I can feel it. I told Whoopsie, I don't want to cry, but my brain does. Keeping engaged in positive has been challenging for me. But you're right in that it does help doesn't it? Some similarities Still.

I can relate to what you have written. 

 

Yes, the crying jags have a life of their own.  I used to wake up each morning sobbing my head off before I even had any time to think of anything sad.  It was a involuntary morning ritual for the longest time.  I just accepted that I was going to be an emotional basket case each morning for several hours straight.+++++++++++++++++++++++++++++++++++++++

 

As soon as I cease such engagement, I plummet into very bad states.  Distracting via household tasks do not help me one bit.  In fact, I feel more alone, more depressed, more frustrated.  Consequently, I spend a lot of time on-line researching anything that fills my mind with positive distraction.

 

Yip, there you go, if you cease the engagement it plummets. It's challenging for you too then. Yes, I research a lot of things to while in this shape. A mind vacation isn't it?

 

Yes, indeed re: mind vacation.  I find that I must keep my mind actively engaged in certain mental endeavors in order to navigate through the day.  Watching TV just doesn’t engage my mind in the manner that is required to reduce the depression. It’s as if I have to engage actively since, passive distraction does not have the capability to intercept the intense depression.

 

I actually teared up at a wicket at a govt office talking to a lady last week. Couldn't pull the right words and brain stopped. So embarrassing. I completely relate to this. Completely Still. Wow. Yes to all of it.

 

 

Yep, I can sadly relate to what you have experienced VCG.  Isn’t it horrible to feel so mentally and emotionally vulnerable?  Things are going to get better though.  I remember during my C/T xanax.............as I recovered I started to develop nerves of steel (LOL) and emotional integrity where I could handle just about anything. (lol)__________________________________________________________________

 

I'm glad it's laughable to what is was. Benzo anxiety is unreal. I don't want to leave the house as too overstimulating physically. Perhaps not agoraphobia but same effect?

 

I was the same in regard to overstimulation factor when I went out to run short errands.  Definitely that is an overactive F&F response.  The lights, noise, moment of other humans or traffic etc. are just too stimulating for our CNS.  I can tolerate far more now than what I could even 6 months ago, never mind a year or two ago.

 

Agoraphobia is more of a fear response but is also anxiety driven for sure.  But I had fear of being seen, fear of interacting with others, fear of wide open spaces (even my back yard felt too open ………not cocooned enough for my liking).  I would even get extreme fear at the prospect of opening the door and walking outside but I made myself do it anyway.____________________________________________________________________

 

Ruminations, obsessive thoughts:  still deal with this but again, so much less so.  Used to be plagued at insane levels. 

 

That's a constant for me still with the rapid thought process. THIS is where doctors need to find their information. We guneau pigs can talk but no one listens. All the clinical trials are right here.

 

You’re going to come to discover that these symptoms, as well as all other symptoms, will greatly start to ease up in intensity a few months from now.  BTW, this hasn’t been just my experience, but something I have witnessed with so many other people who have suffered from prolonged protracted WD.  You’ve come so far and been through so much and soon, you will begin to reap the rewards of your commitment to recovery.

 

Oh yes, you are so right re: doctors, clinical trials and us being guinea pigs.  More and more info. is becoming public and eventually, doctors will be unable to deny the reality of what we have been through._____________________________________________________________________

 

Emotional liability:  Still quite emotionally sensitive although not to the tsunamic proportions that it used to be.  Still do feel very bereaved about many things (which anyone would be considering many of the losses that I have incurred) although, I seem to be able to handle the bereavement a bit better although the last several months were very intense.  Things seem to be easy up a bit this past week.

 

I completely relate Still!! Me too, much much loss. Wow, one whole week of a bit easier........not a lot of time for that you. I don't think that aspect will go for me until I'm healed more and in life. You have a way with words.

 

VCG, I think, despite life circumstances, that you will find that your emotional liability will lessen without even trying to influence it.  My life circumstances are pretty bad from so many angles and yet, when the WD induced depression lifts, I feel as if I can handle the multiple life challenges more easily (even though they are overwhelming).

 

I’m so sorry for all the losses you have incurred and are still dealing with.  Believe me, I deeply sympathize.  It makes this WD journey so much more intense when life circumstances and/or relationships have become so unstable.  Somehow we will rebuild over the course of time, as we recover._______________________________________________________________________

 

 

 

The things that are most troubling are the fatigue (at times), low mental and physical stamina, cognitive impairments, sleep problems and depression.  These are the main symptoms that restrict my ability to engage in life but I have every confidence that these, along with so many other symptoms, will greatly remit over the next 5 to 6 months.  The reason I believe this is because I consider how much progress has been made over the last 6 months and use this to gauge how much more progress will be made over the next 6 months.

 

Okay, so that's where your at. It's still quite a bit Still. I'm glad you noticed so much change in the last 5 to6 months though. I really really hope for you that you have major changes in the next 6 months to get  most of this out of the way or at least remarkable progress in lessening. I really do. We all need to get back into life. Big time. This is no way to just survive. It's challenging at the very least.

 

Thank you so much VCG!  Honestly, I don’t doubt that I will be far more functional 6 months from now and so too will you!  Yes, it really is challenging to live with our suffering for so long.  But this is all temporary._______________________________________________________________

 

I know this isn’t very well written but TBH, I have trouble talking about my symptoms since, it traumatizes me due to being through SO MANY past psyche drug WD experiences.  I’m sure I won’t feel as traumatized 6 months from now.

 

Gosh I'm sorry. I shouldn't have asked. It's strange, I know people who get traumatized talking about it and others benefit. Strange how we are all so different tackling this on some levels. Mind you, you have been through the mill. For real. I'm so glad you are getting progress at least to show you that you will be able to put this behind you. It needs to come to an end for you.

 

Once again, I sincerely thank you VCG.  Yes, you’re right re: some people do cope better with the trauma by talking about their experience.  For others, talking about it activates the CNS not to mention the psyche but that then means that one is trapped within one’s trauma (which is not good either). _______________________________________________________________________

 

 

 

I remember when I couldn't even gently sweep the floor without it making me violently sick.  I couldn't even walk up a few stairs without feeling completely wiped out, with laboured breathing, intense leg muscle pain etc. etc.  I can now easily lightly jog up and down the stairs most days without hardly missing a beat.  This is major improvement!

 

Gosh Still, the first year for me was brutal too. Like your describing. Lot's of bed time. Can you believe this does this to us and jogging down stair as a big deal? I used to run 5 miles a day 5 days a weak. Piece of cake back then. Wow.

 

So sorry you were bed bound during the first year.  I can so relate.  Wow!  You used to run 5 miles per day?  Amazing how “in shape” one can be and how quickly incapacitated one can become due to WD.

 

You know…………..you WILL get back to running 5 miles again.  Just these past couple of months I went from not being able to walk down the street…………to now being able to walk for a good 20 minutes to 30 min. straight.  That’s a huge difference in physical stamina within a short period of time.  So, please know, that you most certainly will get back into the groove of physical activity.

BTW, despite still dealing with some fatigue etc. I now have STRENGTH in my leg muscles despite being out of shape and this was before I recently started walking.  It was because I felt some increase in leg strength that provoked me to start walking for exercise.  I will gradually work up my walking time as well as the pace over the next few months._________________________________________________________________________

 

 

I'm certain that I'm leaving out many other details since, there was so much that I suffered from.  BTW, please forgive any repeats within this message.  If I take too much time to try to edit I will land up not posting due to feeling mentally overwhelmed (lol).

 

I hear you and I'll quit asking you so many questions lol. I really appreciate you post thought. I really do.

 

Oh, no………please don’t feel the least bit bad.  I don’t mind answering any questions.  I respond to questions on the days when my psyche and brain can handle such.  I truly know just how important it is to hear about other people’s recovery progress reports and this is why I wanted to share my experiences with you and others.

 

I thank you for appreciating my efforts VCG and I’m happy to respond to any questions you may have.

____________________________________________________________________

BTW, I just came out of a bad wave at the 30 month mark where many old symptoms reappeared but they have mostly remitted now.  It did feel extremely discouraging at the time however, I'm doing better now.  I just have to hang in there for a few more months.  By springtime, I should be doing even better.

 

Jeepers, at 30. And I read your post to another saying bad waves far out aren't always weak either. I'm so glad they have mostly remitted. Easy to get discourage that far out thought isn't it?

 

 

Yes, it can be very discouraging to be hit this far out however, I do know that the worst is behind me now.  IT’s not possible to remain in same state forever.  I know of some people who are now doing so much better at the 33 and 34 month mark.  So, although the journey can be long for many of us, it does not last forever.  At some point, symptoms do start to decline in number and in intensity and greater functionality comes to the forefront with milder and shorter temporary set-backs.  The 3 year mark is a common turning point for many of the protracted folks.

 

BTW, please don’t feel the least bit pressured to respond to anything in this post.  I was just offering further elaborations but do feel free to ask any questions if you wish.

We’re all going to be okay.  We just have to hang on for a bit longer.

Peace and Healing to You and Everyone!

 

Still Alive

[[St...]]

lislis........

 

I just quickly read your last post and I will respond more fully in a day or two but I wanted to quickly mention that I think you're making the right decision re: the postpone the colonoscopy and endoscopy.

 

My story is a long one but to give you a very quick scoop........during several of my previous C/T WD experiences years ago (which I did not know was WD induced) I have such violent digestive problems and I went for 2 endoscopies, 2 colonoscopies, barium swollow tests, and motility testing and every single test came back NORMAL.

 

There were no organic problems per se but rather were all AD and benzo WD induced WD symptoms.

 

Even this last WD the digestive symptoms were even far more profound (violent) than previous WD experiences and I refused to go for any testing.  I thought I'd ride out at least 30 months of WD before subjecting myself to any invasive tests not to mention, I KNOW that if I subject my CNS to any type of sedating drugs that I will set back my recovery in a big way.

 

I've come too far and have improved so much in way of my digestive system and so, I'm not going to allow ignorant medical professionals tinker with my body in way of invasive procedures and/or any toxic medications.

 

I think you're wise to postpone such testing UNLESS of course you are experiencing some type of bleeding from the digestive track.  It's not wise to ignore symptoms that could be possible signs of disease although as we all know, WD symptoms do mimick many diseases and so it's really hard to know when to hold off from testing versus when to proceed.

 

I don't wish to advise people to never go for testing but, at the same time, I don't wish to advise invasive procedures or medications that can set-back recovery.

 

BTW, they years ago they never used to sedate patients for colonoscopies.  Now a days they sedate patients for everything. 

 

I better post this now.  I will respond more fully hopefully tomorrow.

 

You take good care of yourself in the meantime.  You're going to be okay.  You just have to ride out a few more months.  I know it isn't easy but you've come this far and soon, you will begin to experiencing relief.

 

Still Alive

[[va...]]

Hi VCG......

 

Thank you so much for ALL of your feedback, understanding, sympathies and sharing in your previous post to me.  It really felt good to read your responses although, at the same time, it very much saddens me to hear of all  have been through and continue to go through.

 

I wrote: Bone pain and tooth pain:  Still incur this although not as severe and not as often.

 

Your response: Okay. Where do you have bone pain. It comes and goes in my face. I have no tooth pain but metal teeth feel top left. I'm glad it's not as severe or often for you.

 

Thank you for your concerned feedback and being glad that I have found some relief in this symptoms.

 

In response to your question: I had bone pain in many areas of my body as well as my face.  Face pain was in my cheek bones, jaw bones and in the bridge of my nose.  The pain felt like it was deep within the bones themselves rather than surface pain.

 

So glad you do not have the tooth pain to contend with.  Such pain can become very bad and it's difficult to know if one actually needs to see a dentist.  For example the other day I had a bad flareup in one tooth where I swear to God it felt like an abscess type of pain but it went away the next day.  I feel blessed that it was that short lived since, I've gone through hell just with the tooth pain alone.

 

Your mention of "metal teeth" do you mean that you have a metallic taste in your mouth?

 

BTW, I forgot to mention another type of head symptom.  I used to have this constant pain in the right side of my head for the longest time.  Eventually,  it did  ease up but would tend to reappear for spells.  At this point of WD is does reappear but only briefly (couple days in a row or for a few hours at a time) and the pain is much less intense.  It's more like a dull pain rather than intense at this stage of the game.

 

I also used to get ice-pick jabs in my head that were very painful although they would only last seconds at a time.  Severe headaches were another issue as well but those have mostly disappeared at this stage of WD (31 months off the drug).  Intense burning sensations within my brain.  This was not scalp burning (had that too BTW) but rather, the brain itself felt like it was on fire.

 

Just editing to add another "bone-head" symptom (LOL).  The whole top of my skull bone was painful (in the bone itself) not just scalp pain.  And if I pressed on my skull it would pain even more.  Gosh, this post is having me recall so many head symptoms that have disappeared.

 

 

I'm so sorry you deal with varying head symptoms VCG.  They are horrible (as you know), especially the head pressure/helium head.  It really restricts one's movements and activities in a huge way!

 

I'm also sorry to hear that you are suffering from depression as well.  Again, this symptom can really restrict one's ability to engage and function.

 

ALL of your symptoms WILL eventually ease in intensity and finally remit.  It's my sincerest wish for you to be rid of these horrid symptoms in the very near future so you can begin to live more fully.

 

You WILL recover from all of this!  It's a PROMISE!!

 

 

Still Alive

Bone pain. I get what you're saying. I have very little now around my left orbital eye bone. Very very little. I got it in my orbital eye bones, on and around my eyes, forehead and cheekbones. Like you, and right in the bone. Bad. That left about 3 months ago out of acute at 23 months or so. (Still in left eyeball and orbital bone but less.)

 

Now I know what you mean in "not a surface" pain. Same.

 

So you still get that but not as much. Okay. Man, this pill hits some of us the same way. It's hard to believe it's from a pill. I'm sure glad you don't get it as often or severe anymore. You had it all over your face holy smokes. Yeah that was a primary of mine, didn't cover as much area as yours, thankgoodness not anymore for you either.

 

And a constant acute pain on the right side of your head huh? Just a few hours a couple days in a row at times now? Good. Man. And it's less in intensity so trying to leave. That's good.

 

Icepicking jabs in your head and headaches. I'm so lucky I missed that. Good grief. I'm so glad for you it's mostly disappeared for you. Finally. And, we have another similarity. Burning brain, inside. I did get the scalp and inside like youl. That was also a primary for a long time. I still get a strip across the left side of my brain sometimes. (Not inside now.) I can't believe you had it inside too. I talked to a brain injury doc and he said it's the blood vessel nerves in and around the mass of the brain that we are feeling. Everyone says you don't feel pain in the brain and he said of course you can. It's the mass that doesn't have pain receptors. But there are nerves in the blood vessels throughout the mass. I'm so glad that's gone for you, and me.

 

On your skull when you'd touch it too? So you had a lot of exterior and interior then. You were in bad shape for a long time. Sorry you. It's hard to believe and a good thing to be past that isn't it?

 

That's so weird with your tooth pain. I had severe burning gums on bottom right and I'd cry from all of this crap. But that particular area for burning, was only off and on in month 8. I can't believe you got tooth absess feelings on top of everything else. Man...................

 

You've really been through it like too many here. I am relieved for you that you are moving forward with things dropping off. It sure takes a long time for some of us doesn't it?

 

You know, as far as being down or depression. It's not a bw symptom  preventing me from engaging or functioning. I may be down in some senses cleaning up the mess in this but I'd be active and doing what I need to do in life. I really wouldn't have it if I didn't have my 3 head symptoms of helium, pressure and electric. Without those 3 in strength and longevity holding me back, the other stuff I could easily get around and be daily functional. (And hinders sleep of course.)

 

Thanks for being specific. Some hate it, I don't feel like a leper because of it lol. We have sure have come a long way. At the end of the day, I always say, for me I know I'll heal. It's just the complete mess it made from the longevity. I can't wait until you feel almost out of it Still Alive. I can't wait for that for all of us you know? xo   -you have a way with words and thankyou so much for the encouragement.

[Guest [ru...]]

Just wanted to note 1 week after totally removing the Fish Oil (thinking it may be revving up an oversensitive CNS) my balance/walking has improved REMARKABLY!!!!!!!  (The downside is that I have more deep stabbing random brain pains now as Fish Oil is an anti-inflammatory) however I dunno I'd prob rather have better walking & balance...so to all those considering whether SOME supps might be revving up your symptoms - in this case, for me, I think its safe to say it was.  Wisdom and clear guidance and heaps of progress to you all! Hugs, Ruth xoxoxo

[[Ma...]]

Just wanted to note 1 week after totally removing the Fish Oil (thinking it may be revving up an oversensitive CNS) my balance/walking has improved REMARKABLY!!!!!!!

 

Interesting that you posted this.  About 2 months ago, I also stopped taking fish oil.  It seemed like it revved up my symptoms as well.  I'd love to get back on it, because it totally improved my lipid and cardiac risk profile.  (For example, my C-reactive protein high-sensitivity was 0.27, and my Lipoprotein(a) was 5.  Both considered VERY good figures.

[[va...]]

Yes, it can be very discouraging to be hit this far out however, I do know that the worst is behind me now.  IT’s not possible to remain in same state forever.  I know of some people who are now doing so much better at the 33 and 34 month mark.  So, although the journey can be long for many of us, it does not last forever.  At some point, symptoms do start to decline in number and in intensity and greater functionality comes to the forefront with milder and shorter temporary set-backs.  The 3 year mark is a common turning point for many of the protracted folks.

 

BTW, please don’t feel the least bit pressured to respond to anything in this post.  I was just offering further elaborations but do feel free to ask any questions if you wish.

We’re all going to be okay.  We just have to hang on for a bit longer.

Peace and Healing to You and Everyone!

 

Still Alive

I'm really glad you came around. You know, I read my post before about being down, and I unintentionally contradicted myself. I guess what I meant was, even if being down is an element of withdrawal, it doesn't stop me from functioning, nor wouldn't. It has no impact on my not getting around. My head symptoms do, they are actually what stops me dead in my tracks, even from jogging, I can feel my brain shake. Gets to strong. When those go everything will change for me. Make sense? With that said, it's been really nice talking to you. You've hit so so many nails on the head. Thanks for taking the time to be so specific.

 

I honestly, don't know how others make it without the internet you know? I really don't.

 

I like what you said here, I know of some people who are now doing so much better at the 33 and 34 month mark.  So, although the journey can be long for many of us, it does not last forever.  At some point, symptoms do start to decline in number and in intensity and greater functionality comes to the forefront with milder and shorter temporary set-backs.  The 3 year mark is a common turning point for many of the protracted folks.

 

I guess our turn will come. I really hope you had a good Xmas. More than managed through it ya know? And everyone else here. xoxo

[[va...]]

Ruthie Allison, fish oil brings back mild, but brings back nonetheless face nerve burning. I found that out a bit back. Strange how it would do that? You never know right?

 

I'm taking a bit more of that "clear guidance" you're throwing our way lol! xox

[[Ja...]]

Indeed benzo withdrawal is a strange phenomenon...the last few nights I've been getting a lot of nervous itching...wonder if this is cortisol related or just another "phase of healing"...maybe I should check my bed for bugs? XD

[[Ma...]]

Indeed benzo withdrawal is a strange phenomenon...the last few nights I've been getting a lot of nervous itching...wonder if this is cortisol related or just another "phase of healing"...maybe I should check my bed for bugs? XD

 

That's so funny that you wrote this....  My leg has been itching at night, but I know the bed is clean...  And I've had some thoughts that some of my broken sleep and "rushes" I get during the day might be cortisol dumps....  I've only read about them, but I need to learn more about what they are....

[[cu...]]

Ruthie Allison, fish oil brings back mild, but brings back nonetheless face nerve burning. I found that out a bit back. Strange how it would do that? You never know right?

 

I'm taking a bit more of that "clear guidance" you're throwing our way lol! xox

 

even the tiniest bit of fish oil makes me severely depressed, maybe if i hung on it would pass and i would benefit, but i just can't do it right now.

[[li...]]

I experienced headaches from fish oil. 

[[St...]]

Thank you Still Alive for the GI info., greatly appreciated. 

 

You're most welcome!  Thank you for appreciating my efforts.

 

I am so sorry that you are still struggling.  At first when you resonded to people I thought you were almost healed, and giving us your experiences. 

 

Thank you for your sympathies lislis.  I have healed from C/T (tolerance WD) from my xanax experience.  It took me 2 years to recover from that and BTW, I did not take an AD to deal with xanax WD.  Rather, I was on the AD for many years and then was prescribed xanax (which I did not take everyday but developed tolerance and interdose WD).  Anyway, I did completely recover from xanax C/T experience and once I did, I then started a fairly rapid taper from my AD.  I tapered too fast the first time and when I jumped off the last dose all hell broke loose and I panicked, reinstated and that's when things became even more nightmarish due to kindling etc.  I had to taper a second time and it was violently brutal.  I've been drug-free for 31 1/2 months as of yesterday.

 

I see now that your GI is better, but you are still symptomatic in other areas. 

 

Yes, the GI issues are so much better as well as the head symptoms.  While I am still very symptomatic in other areas, I have still made many improvements in these areas.  The symptoms I still deal with are milder in intensity than what they used to be.  I still don't have a life but there definitely has been major progress but no doubt, more healing is needed.

 

If there is anything I can help you with, please let me know.  I have experienced more symptoms than I could list.

 

Oh my gosh, thank you so much Lislis.  That is very kind of you to offer and I sincerely appreciate it!  I'm so sorry you have had to deal with such a long list of symptoms.  Some of us seem to get just about every symptom possible.   As you know, it's like being tortured from every conceivable angle.

 

Besides the stomach issues, I've had weird leg sensation over the past months.  I've had inner vibrations the wholed duration of my withdrawal, but they have settled in most areas.  I notice now that the vibrations hit the weakest points of my body now, which is actually a good indication of where withdrawal is being focused currently.  However along with vibrations on both legs between m knees and ankles in the muscles on both sides of my chins, I also have tenderness and they hurt when I rub them.  I assume it's the muscles because and I flex my feet back and forth I can feel the muscles pulling and they hurt.  This is new for me.

 

Oh yes, the vibrations and muscle spasms and muscle tension and pain.  I'm so sorry you are now dealing with these symptoms.  Interestingly, I too did not develop these symptoms until much later on.  I also developed numbness and pins and needles, especially in my right lower half of leg.

 

During my xanax WD, I had severe numbness and pins and needles in early WD and it was very severe but as I recovered it slowly remitted.  With this AD WD, this symptom developed much later.  So strange how things can emerge and the intensity in which they can emerge.

 

Also, I posted above that I was 21 months out.  Vancouvergirl reminded me that I made a mistake on that.  I usually calculate in years.  I am currently 2 years and 10 month off

completely, 4 years since I first c/t, but I went back on and tapered for 18 months.  So in months, I am 34 months off klonopin.  However I am 22 months off of Flexeril that I only took for 2 months when I developed bad head spasms.  It was the addition of the Flexerill years after benzo withdrawal started that triggered mental sympotms I never had before and all my GI issues starting with sugar intolerance.

 

So, even though it's been 34 months since I stopped Klonopin, it is the 22 months off of Flexerill that I've been suffereing with digestive issues. 

 

Oh okay.  I'm not sure if you are aware and if so, then please forgive me for sharing this but Flexerill does have WD and/or negative rebound effects.  I'm finding out through much research that it's not just psyche drugs that have WD effects.  So many other medications do as well.

 

One WD symptom of Flexeril is nausea and no doubt this drug can also cause rebound/WD effects that create muscle tension, pain, spasms etc.  A good rule of thumb that follows basic biology is: whatever a drug tends to help will produce the opposite effect when one discontinues the drug.  The negative rebound effect many times is worse than the original condition that was being medicated.  So, many of your current problems could be caused by Flexeril WD coupled with lingering benzo WD symptoms.

 

BTW, if you google Flexeril..........type in WD effects from Flexeril or "Rebound" or "Discontinuation Effects".  Please keep in mind that just about all medical reports of drug effects barely scratch the surface of the vast array of potential WD effects that any drug can produce.  These drug fact sheets never include all possible side-effects and/or WD effects.

 

I have no doubt lislis that if you remain drug free, you will completely recover from ALL of your current symptoms.

 

Stilll Alive - you mentioned that you continued with GI issues for about 2 years after you were off, which would keep me in that time line as I am about to approach 2 years from the onset of the GI stuff. 

 

Actually my GI issues lasted longer than 2 years but they have greatly improved since that time.

 

I am suppose to get a endoscope and colonoscopy this week, but I am going to postpone it again, I believe.  I just can't bring myself to go through with it and get the anestesia, as it seems everything I take makes me sicker.  I only pray that I am not overlooking somehting worse.

 

I responded to this section in a separate post so I won't repeat but wish to add that I hope all of your symptoms are WD induced and not something else. 

 

You can go for a colonoscopy without any sedation and from what I remember, I only experienced some cramping but it was not what I would consider painful at all.  In fact, the post procedure discomfort was far worse than the procedure itself since, they pump your tract with air.  Due to not receiving any anesthetic, I was able to drive myself to the hospital and back.  Keep in mind that they have to be gentle and careful during the procedure as to not cause any damage so it's not a painful experience.

 

Even with careful and skillful manipulation of instruments there are still risks involved with any invasive procedure and your doctor via informed consent, should have alerted you to possible risks involved. If she/he did not then you need to request "full disclosure".  Most times doctors will only provide "partial disclosure" (provide the patient with the most likely possible risks involved).  If memory serves me well, they are not obligated to provide full disclosure unless of course the patient requests such.

 

Thank you all for your encouragement.

 

You're most welcome lislis.  I just know that you are going to be fine.  I know how distressing it is to naviagate through these very difficult times and I feel for you because I truly understand what it's like.  Honestly, I never dreamed I'd be free from severe GI distress and here I am now living with one less horrid symptom.  The debilitating GI nightmare is OVER and it will be over for you as well, given more time.

 

As we all know, stress directly effects the digestive tract and so, it's very important to avoid stress and/or minimize exposure to such as well as engage in as many relaxation techniques as possible.  We also need to keep worry and fears to a minimum since, feeding such creates stress which will directly affect the CNS (consequently intensifying WD symptoms).

 

Take good care and keep the faith.  You're going to fully recover!

 

Still Alive

[[St...]]

Hey VCG.........

 

another response to your response (lol)

 

Bone pain. I get what you're saying. I have very little now around my left orbital eye bone. Very very little. I got it in my orbital eye bones, on and around my eyes, forehead and cheekbones. Like you, and right in the bone. Bad. That left about 3 months ago out of acute at 23 months or so. (Still in left eyeball and orbital bone but less.)

 

Now I know what you mean in "not a surface" pain. Same.

 

 

So you still get that but not as much. Okay. Man, this pill hits some of us the same way. It's hard to believe it's from a pill. I'm sure glad you don't get it as often or severe anymore. You had it all over your face holy smokes. Yeah that was a primary of mine, didn't cover as much area as yours, thankgoodness not anymore for you either.

 

Geez…………..so sorry you had to deal with such pain VCG.  I’m so happy for you that you have noticed substantial improvements with this particular symptom.  One less constant assault to have to deal with.

 

 

And a constant acute pain on the right side of your head huh? Just a few hours a couple days in a row at times now? Good. Man. And it's less in intensity so trying to leave. That's good.

 

Icepicking jabs in your head and headaches. I'm so lucky I missed that. Good grief. I'm so glad for you it's mostly disappeared for you.

 

Thank you for all of your understanding, validation and support!  It actually feels like a gift TBH and I feel deeply appreciative.  I'm glad you didn't have to deal with the ice-pick pain although I'm sure you had to deal with other symptoms that I have been spared.

 

Finally. And, we have another similarity. Burning brain, inside. I did get the scalp and inside like youl. That was also a primary for a long time. I still get a strip across the left side of my brain sometimes. (Not inside now.) I can't believe you had it inside too.

 

I’ve read of other people reporting both of these symptoms as well, although it doesn’t appear to be common but certainly not unheard of in the psyche drug WD circles.  I’m so sorry you have incurred this torture.  I really feel for you since, I know how horrible it feels to have a brain that feels like it’s on fire.

 

Sorry you still have to deal with partial flare-ups but thank God, you are past the most severe stages of the burning brain assaults.

 

I talked to a brain injury doc and he said it's the blood vessel nerves in and around the mass of the brain that we are feeling. Everyone says you don't feel pain in the brain and he said of course you can. It's the mass that doesn't have pain receptors. But there are nerves in the blood vessels throughout the mass. I'm so glad that's gone for you, and me.

 

OMG………….you don’t know how much it has meant to me to read this!  Thank you so much for sharing.  I too was told, by many, that it’s not possible for the burning to be felt in the brain but I KNOW what I felt and I KNOW what I went through (as do you) so no one could convince me that my brain was not burning.  There is no denying the intensity of it, nor the location of the burning.

 

What you have shared makes sense.  I’m going to have to keep a copy of this section so I can refer to it, if need be, in the future.  This was most validating to read!

 

On your skull when you'd touch it too? So you had a lot of exterior and interior then. You were in bad shape for a long time. Sorry you. It's hard to believe and a good thing to be past that isn't it?

 

Thank you VCG for the support and also for utilizing more effective terminology than I re: “exterior and interior”.  That’s a better description of things.  Re: your second sentence………it’s miraculous to see how shockingly severe symptoms can eventually lessen and remit.  Recovery does occur!

 

That's so weird with your tooth pain. I had severe burning gums on bottom right and I'd cry from all of this crap. But that particular area for burning, was only off and on in month 8. I can't believe you got tooth absess feelings on top of everything else. Man...................

 

Oh my gosh re: the burning gums.  That must have been painful!  So sorry you had to contend with such.  It must have felt unbelievably painful to eat or drink anything with that degree of gum sensitivity. 

 

I did have some gum flare-ups but nothing like what you experienced.  Tooth pain …..yes, very severe.  At it’s worse I was in unrelenting pain (ALL of my teeth) for about 2 ½ months straight.  I was to violently ill to go to the dentist and eventually the intense pain became more selective (few teeth at a time) but this pain would migrate to other teeth and all of my teeth felt sensitive.  Even teeth that I had been previously root-canalled were in pain.  BTW, I have read of others who have experienced the same so I don’t wish to come across as some unique case.  I’m not and I certainly never wish to come across as such.  I've always believed if this has happened to me .......it has to have happened to others.

 

I have a research paper that talks about serotonin expressed in enameled organs and so, it’s not surprising that many of us incur tooth sensitivity and/or pain.  These damn psyche drugs have the potential to affect just about every organ and system in the human body and for a long time after ceasing the drugs.  I still deal with tooth pain and sensitivity although it's not as extreme but I can stil incur bad flare-ups and almost every day I have some degree of discomfort that can last an hour or so or for the whole day.

 

It’s shocking that these drugs are even prescribed.  They are so toxic and damaging.

 

You've really been through it like too many here. I am relieved for you that you are moving forward with things dropping off. It sure takes a long time for some of us doesn't it?

 

Yes, I’m only one of countless cases.  It’s the length of time (as you know) that becomes hard to deal with.  The longer this goes on the more devastating it becomes in many ways.  I mean, if we suffered for a few months, we could psychologically rebound from the experience moreasily.  However, the longer this goes on the more psychological impact occurs and the more losses that are experienced.

 

It’s unbelievable what we’ve all been through and continue to navigate through.  Everyone reading this thread knows only too well, just how much strength, resilience and determination it takes to get through this lengthy experience.

 

Once again, I do thank you for being supportively engaged and please know that I too am relieved that you have incurred some good signs of recovery although it does pain me to know that you are still incapacitated by some stubborn symptoms.  Eventually, these will remit and I really hope they do so very soon!

 

You know, as far as being down or depression. It's not a bw symptom  preventing me from engaging or functioning. I may be down in some senses cleaning up the mess in this but I'd be active and doing what I need to do in life. I really wouldn't have it if I didn't have my 3 head symptoms of helium, pressure and electric. Without those 3 in strength and longevity holding me back, the other stuff I could easily get around and be daily functional. (And hinders sleep of course.)

 

Okay, I understand the root of your depressive symptoms.  They are more exogenous than endogenous.  No doubt your current symptoms are debilitating and consequently, preventing you from engaging more in life.  Who wouldn't be depressed about that?

 

Oh geez. Your head symptoms hinder your sleep as well?  That’s horrible.  I’m so sorry VCG.  Man, I really hope these symptoms ease up for you soon.  One thing is for certain, they will NOT last forever.

 

Thanks for being specific.

 

Actually, I thank you right back since, specifics are very helpful IMHO.

 

Some hate it, I don't feel like a leper because of it lol.

 

Lol!  Some may hate it but others may love it.  Well, at least we won’t infect each other since, we both seem to have the “disease of specificity”. (lol)

 

We have sure have come a long way. At the end of the day, I always say, for me I know I'll heal. It's just the complete mess it made from the longevity. I can't wait until you feel almost out of it Still Alive. I can't wait for that for all of us you know? xo   

 

Indeed we have come a long way and I sincerely wish you a more linear and speedy recovery from this point forward.  It will be exciting and a feeling of celebration to witness your recovery and the recovery of many others although very sad to see so many other new victims who must struggle through such a horrific experience.

 

-you have a way with words and thankyou so much for the encouragement.

 

Thank you VCG but you know, you also have a way with words. TBH, it has felt very healing to share these exchanges and I’ve learned new things from you as well as received so much validation, support and encouragement.  I really am moved and grateful!  Thank You!  I really mean that!

 

Still Alive

[[St...]]

My head symptoms do, they are actually what stops me dead in my tracks, even from jogging, I can feel my brain shake. Gets to strong. When those go everything will change for me. Make sense? With that said, it's been really nice talking to you. You've hit so so many nails on the head. Thanks for taking the time to be so specific.

 

I honestly, don't know how others make it without the internet you know? I really don't.

 

I can completely understand how jogging can stop you in your tracks.  I know how incapacitating the head pressure alone can be.  Oh my gosh re: feelings of our brain shaking?  That must feel unbelievably horrible!  I can only imagine since, I did not incur that particular symptom.  Man, I feel for you big time.  I have read of others talking about brain shakes, brain shivers.  I really hope this symptom disappears soon for you very soon VCG.  I don’t doubt that you will see some substantial improvements in a few more months.

 

Really nice talking to you too BTW.  I’ve relayed further thoughts regarding our exchanges in my previous email so I won’t repeat.

 

I was one of those people unfortunately, who went through psyche drug WD many years ago when there was no internet nor support groups.  Consequently, I had no idea why I was continually so violently sick.  That’s a whole other story……………..a long a traumatizing one that I usually don’t discuss too often but I will tell my full story someday once, I’m recovered enough.  Right now I have to keep as positive as possible so I can ride out the next 6 months or so.

 

 

I guess our turn will come. I really hope you had a good Xmas. More than managed through it ya know? And everyone else here. Xoxo

 

Yes, indeed.  Our turn will come.  Thank you re: the well wishes for xmas but like you and others, I managed my way through it.  TBH, I was glad when it was over. The good news is:  it was far easier this year than it was last.  However, I wasn’t into xmas for many reasons, WD being only one.  (lol)  I won’t even touch that subject. (lol).

 

Still Alive

[Guest [ru...]]

Just wanted to note 1 week after totally removing the Fish Oil (thinking it may be revving up an oversensitive CNS) my balance/walking has improved REMARKABLY!!!!!!!

 

Interesting that you posted this.  About 2 months ago, I also stopped taking fish oil.  It seemed like it revved up my symptoms as well.  I'd love to get back on it, because it totally improved my lipid and cardiac risk profile.  (For example, my C-reactive protein high-sensitivity was 0.27, and my Lipoprotein(a) was 5.  Both considered VERY good figures.

 

Well thats GREAT that you also found/noticed Fish Oil revved things up for you Matthew! I'm really happy for you! It's great when you can CLEARLY find the culprit...when you've identified the problem, thats half the problem solved.  (I diarize what I take, doses & symptoms daily so I can go back & analyze/compare (when my brain is semi-clear) as its impossible to remember everything when its happening to YOUR brain!).  I'm not a scientifically minded person at all, so I dont understand the rest of what you were saying, but great to know you've had some improvement or less revving in your symptoms!  More clear guidance and healing to you!!!

 

Just as a side note I also tried lowering my Magnesium.  I was careful to only lower 1 supp at a time, so I could clearly identify what was doing what.  After only 1 day off the Magnesium I noticed I was getting more "heart-attack level" frights that I just couldnt cope with, so I've quickly gone back on it.  I still feel wound up tighter than a piano string emotionally (the DP seems to clench my emotions extremely badly still, then I have times of it going all messy), but have found for me, the Magnesium CERTAINLY helps to calm me/my hyper-sensitive CNS.  If I werent on it, I may not be able to drive short distances now.

 

Also too when I have those times of cog fog increasing, then losing it completely comprehension wise...I call them "brain meltdowns"...all symptoms increase in intensity (including the throat muscles pulling on my vocal chords-speech).  This still happens daily, & Only Vit C brings me out of that within an hour or so...lord how traumatic...

 

Those brain meltdowns also seem to happen at almost the same time everyday too (before dinnertime) so I am wondering whether its a dip in blood sugar that brings on the meltdowns/increased cog fog??? Or maybe still the protracted w/d???  I've been eating HEAPS lately...not even hungry & eating so much-just like I'm craving extra food nowdays.  So I'm going to try/test SNACKING (on protein) at perhaps 4pm to see whether it stops those brain meltdowns & increased cog fog ETC.

 

Anyone else notice lower blood sugar increases/revs up symptoms? Or eating extra HELPS stave off extra cog fog/other symptoms???

 

I still have my balance/walking back almost SOLID still wihoooooooooooooooooo!!!!!!!!

 

Anyway, hope that helps somebody and love and healing to you all!!!!

 

xoxoxo

[[li...]]

Thanks Still Alive for the info on Flexeril.  Ya know, something inside of me told me not to take it, but my head spasms were so bad and the Flexeril seemed to keep them away.  However, what I didn't know is that I was setting myself up for a more horrid withdrawal than I could have imagined.  Flexeril triggered all my GI symptoms and all new mental symptoms that I never had the first 2 years in withdrawal.  I also know know that the two, mental/GI symptoms were related.  It was only then that I researched Flexeril and found that it act like a tryciclic anti-depressant and then many of the pieces of my puzzle fell into place.  When I stopped the Flerxil, all the head spasms came back and I had to just ride them out, which I should have done in the first place.

 

I have been drinking a lot of smart water that has electrolytes in it in hopes to settle my inner vibrations, and it seemed to work, but like I overdo everything, I think I drank too much, because I noticed an increase of pain in both my lower legs along with spasms.  I thought it was just muscle constriction from withdrawal, but after a hair analysis showing my calcium, magnesium and potassium are off the chart, I stopped drinking it and the leg pain disappeared.  Last night I ate a lot of spinach and woke up last night with the same leg pain.  I saw that spinach is full of magnesium and possibly this is another clue. 

 

I so wish someone could wave a magic wand over my body and tell me what things I am deficient in and what things I need to supplement or just plain jolt my body back into balance. 

[[pa...]]

ruthiealison - How much magnesium do you take and are/were your blood levels low?  I found early on that magnesium helped a lot with muscle spasms but I don't have those anymore and stopped taking extra.  I've thought I might go back on it because it is supposed to calm you down. 

 

Paresthesia

[Guest [ru...]]

ruthiealison - How much magnesium do you take and are/were your blood levels low?  I found early on that magnesium helped a lot with muscle spasms but I don't have those anymore and stopped taking extra.  I've thought I might go back on it because it is supposed to calm you down. 

 

Paresthesia

 

Hi Paresthesia,

 

I've gone back to 2 tablets a day of the Magnesium.  One in the morning and 1 in the evening.  NutraLife "Magnesium Complete" equivalent to 300mgs of Mag per tablet, so 600mgs per day.  (I find it wise to "space out" supplements during the day, rather than all in one dose for BALANCE).

 

I have no idea whether my blood levels were low as my Doc didnt test for this.  It was just something I researched and decided to try out myself.  (As a side note my sister also swears by Magnesium, even though she hasnt been thru Benzo W/D...).  It certainly seems to be a SAFE supplement for me...thank God!!!

 

I think when I was researching I remember hearing the dosage recommended as per body weight.  I cant remember who that Doc was, but she was someone who was advocating Magnesium...that certainly seemed to make sense to me, as we're all different...

[[Co...]]

Hi everyone, wanted to ask Tropical Soul or Kid or anyone else with burning, nerve sx...was wondering if you guys experienced nerve sx such as knives, biting, pulling, pinching in the same areas you now have the burning...I have burning, stinging in the same areas that I have the more intense nerve stuff, wondering and hoping for your sake that things have improved. Im sorry if this doesnt make sense. Hoping you all are not doing too badly tonight. Im seeing a doc tomorrow...very scared...but hoping for a bit of relief. Love, Colleen

[[dj...]]

Hey everyone, I'm just over 2 years out.  For the last 3 months or so I've been taking fish oil, a multivitamin and glutamine.  Any advice on this?  I don't know if I've noticed a worsening, but it hasn't sped up recovery that's for sure.  It's so hard to tell if the supplements have led to waves or not. 

[[Ma...]]

Hey everyone, I'm just over 2 years out.  For the last 3 months or so I've been taking fish oil, a multivitamin and glutamine.  Any advice on this?  I don't know if I've noticed a worsening, but it hasn't sped up recovery that's for sure.  It's so hard to tell if the supplements have led to waves or not.

 

Throughout my ordeal, at least for the past year, I've read that most supplements do not aid in recovery.  Even Dr. Ashton in "The Ashton Manual" indicates that supplements are unnecessary and probably worthless for most people eating a proper diet.

 

For me, at one year out, I noticed that fish oil and multivitamins revved up my issues.  So I've stopped both, which I had been taking for almost 4 years as advice from my doctor.

 

Why are you using glutamine? Rich sources of it are in most meats, so getting it naturally is advisable.  I've also learned, whether accurate or not, that taking oral amino acids can disrupt the balance of amino acid processes in the body.  I've read that amino acid supplements aren't meant for long-term use and carry some warnings which are varied and seem inconsistent depending on who is writing the review.

 

Now, if you don't seem bothered by at least the fish oil, then I'd continue to take that.  There are many well-founded studies that demonstrate that fish oil has health benefits.

 

But, you'll want to fully discuss this with your doctor or qualified health care provider.

[[Dp...]]

Hey everyone,

 

    Sorry I'm rambling a lot here.

 

  I'm almost 19 months out from a fast taper of 4Mg's K. I am currently in the worst have i have had probably 8-9 months i was doing fairly well for months, but now i feel like i have gone completely back to square one. I normally would not be concerned about this, because i have been up and down throughout this whole ordeal, but this flare is just so extreme compared to any other i have experienced. I do not believe i have done anything differently.. This started around the first of December, and is still going strong.. My question is have any of you experienced this kind of wave this far out, or heard of anyone getting slammed with a symptoms again after feeling pretty well for such a long time? I would appreciate any feedback.

 

Some of the symptoms i am having at the moment.

Extreme anxiety - this has been gone sense around 8 months off, but is back with vengeance.

Tension headaches

low grade vibrating all over body - also gone sense around month 8, i think it goes along with the anxiety issue

GI issues

tinnitus - very loud ringing in my ears

 

There are more such as cognitive issues, and pains but the symptoms above are the most troubling for me at this point.

 

 

I know there is not much i can do other then just keep moving forwards, but i guess i just need to vent..

 

Thanks everyone,

Dane

[[dj...]]

Hey everyone, I'm just over 2 years out.  For the last 3 months or so I've been taking fish oil, a multivitamin and glutamine.  Any advice on this?  I don't know if I've noticed a worsening, but it hasn't sped up recovery that's for sure.  It's so hard to tell if the supplements have led to waves or not.

 

Throughout my ordeal, at least for the past year, I've read that most supplements do not aid in recovery.  Even Dr. Ashton in "The Ashton Manual" indicates that supplements are unnecessary and probably worthless for most people eating a proper diet.

 

For me, at one year out, I noticed that fish oil and multivitamins revved up my issues.  So I've stopped both, which I had been taking for almost 4 years as advice from my doctor.

 

Why are you using glutamine? Rich sources of it are in most meats, so getting it naturally is advisable.  I've also learned, whether accurate or not, that taking oral amino acids can disrupt the balance of amino acid processes in the body.  I've read that amino acid supplements aren't meant for long-term use and carry some warnings which are varied and seem inconsistent depending on who is writing the review.

 

Now, if you don't seem bothered by at least the fish oil, then I'd continue to take that.  There are many well-founded studies that demonstrate that fish oil has health benefits.

 

But, you'll want to fully discuss this with your doctor or qualified health care provider.

 

I just looked at when I bought the supplements and it was at the end of Oct., so I've only been taking them for 2 full months.  I think I'm going to stop for a few weeks and see what happens.  I don't know that they really caused any worsening.  The glutamine, I don't know, I read that it was the most available amino acid in the body but that under times of stress the body may need more than it can get/make.  My diet is probably well enough to get the nutrients it needs.  I feel i'm doing everything right.  IT's just so slow and uncertain.  I'm going to take a break from the multi, fish oil, and glutamine and see what happens. 

[[Ma...]]

I just looked at when I bought the supplements and it was at the end of Oct., so I've only been taking them for 2 full months.  I think I'm going to stop for a few weeks and see what happens.  I don't know that they really caused any worsening.  The glutamine, I don't know, I read that it was the most available amino acid in the body but that under times of stress the body may need more than it can get/make.  My diet is probably well enough to get the nutrients it needs.  I feel i'm doing everything right.  IT's just so slow and uncertain.  I'm going to take a break from the multi, fish oil, and glutamine and see what happens.

 

Yeah, I agree.  I'm doing "everything right" as well, but it *is* just so slow and so uncertain.  I've learned that very well....  And look, stopping supplements might not do anything, or it might bring some relief.  One can almost never know.