withdrawing from klonopin, norco, AND Z Drugs...(sorry, I didn't know...)

[[gi...]]

Hi Leena,

 

Yes that's who I lost.  I believe pets are instrumental to our recovery.  I'm glad you have many to cuddle!

 

You have headaches, too?  Mine started Nov 24 - day 1 of my first cut - and finally stopped in mid-September. I still get them occasionally but at least it's not 24/7 anymore.

 

Hang in there, girl.  You're on a rough road but we're here ahead of you, holding out our hands to you!

 

g

[[ad...]]

Hi Leena,

 

I have a lot of the same crap Ginger talks about -- sans the headache (hi Ginger!).  I was just updating my blog and realizing, again, there just are no words to describe some of these symptoms.  At best times, my muscles might feel an intense vibration that, if it kicks into high gear, it feels like intense aching.  And is painful!  After I get a herpes outbreak, my legs hurt really bad for a few days.  And it gets worse at night, for whatever reasons.  I'm ok if I'm distracted, but as soon as I get into bed, OMG.  It's just me and my legs!!!    A little like "me and my shadow"....hahaha.  Last night I broke down and took TWO benedryl and tylenol.  I slept longer, and that was a good thing, but the hangover the next day is not pleasant and it revs up tinnitus and heartrate (which are just two normal side effects from benedryl anyway).  So I avoid "breaking down" except only when  absolutely necessary. 

 

BTW, I always had tinnitus on opioids, so getting off Klon just made it worse.  It's much better now though.  As are many of my other symptoms.  But hopefully, you'll be tapering off SLOW enough that you wont' have as many symptoms at the end.  That's what I'm praying for you, anyway. 

 

Can't wait to hear about the nutritionist's findings.....

 

adelia

[[...]]

Dear Leena:

 

You are so right about the difficulty of describing these weird sensations to anybody.  I remember someone saying that it felt like her blood was electric.  If you said that to a doc he/she would tell you to quit using LSD. 

 

ntw

[[le...]]

Hello buddies,

 

Well, after my visit to the nutritionist I have a whole new thing to "ponder".  It would be impossible for me to describe the experience of visiting with this man.  We actually talked very little about the benzo withdrawal (which in hindsight I regret), though he did acknowledge the difficulties.  He looked at the very brief history which I had given and saw how long I have been struggling...he described my pain perfectly without me even trying to describe it to him...and then he put my personal history together with the fact that I have a son who is a juvenile diabetic, a brother who is schizophrenic...and then asked me about my heritage (mostly German, I think).  He then went into a website (I think it was National Institutes of Health), and started typing in "Gluten and myalgia, gluten and migraines, gluten and diabetes, gluten and schizophrenia...and more that I can't remember (he actually emailed all of this to me right then and there)...And then ALL these scholarly articles popped up that we went through that showed a very strong link to gluten intolerance and these other things.  I had actually tried to go "gluten free" for a few days a year or so ago, and even got the blood test, which came back negative.  I have no intestinal issues, and I didn't really feel that different after a few days on the diet.  He said that my manifestions are that my immune system has turned on my connective tissues and neurological system.  He wants me to do the swab on the inside of my cheek to see if I have the gluten gene (s).  It all made a lot of sense at the time, and still does (I think) except now I am trying to figure out (once again) what is what.   Adelia suggested in a PM that I might start a separate thread about gluten intolerance to see what we learn.  I have been "gluten free" for 2 days, and have not stopped my taper.  I am down to .20mg and still tapering .01 mg a day.

 

I can't type any further without the print disappearing.  I have a little more to say, so will continue in another post.  ~Leena

[[Pa...]]

I can't type any further without the print disappearing.  I have a little more to say, so will continue in another post.  ~Leena

 

Still using Internet Explorer 8, huh? 

[[le...]]

It's Leena here for part 2...I had a terrible night last night.  I think Norco (even just the little bit) may be coming back to "bite" me.  I'm not sure but it seems like I get more headaches when I take opiates.  Plus, they make me itch.  I have had trouble for years with songs staying in my head constantly, but last night it seemed more noticeable than ever and I hated the song that was "playing". (Do any of you ever have this trouble with songs?  Does it go with withdrawal?)  I am so thankful I had church today so that maybe some of THOSE songs are the ones that will get "stuck" on my "record player".  SO..it seems that if I take a Norco to help with my leg pain, it may cause a headache.  Thus, I think I am going to quit the Norco.  The nutritionist is having me take about 7 different supplements (which I may list in my gluten-intolerance post, just to see if any of you have any thoughts.)  I am a little nervous about trying a new diet and taking all of these supplements while trying to get off the klonopin.

Do any of you have any thoughts about stabilizing when I am on this small of a dose?  I am really hesitant to slow down, when I am only taking off such a little bit each day.  But I am willing if you all think it would help the process.  Today is one of those days when I realize how important you all have become to me, again knowing how hard it is to explain any of this stuff to anyone else.  Thank you so much for the time you take in helping me and all the others.

 

:smitten:Leena

[[le...]]

Hi Pam...yes, I asked my husband if we could change that but he is reluctant.  We just bought a new (cheap) computer, and he has spent hours trying to get it all set up and he does not relish the thought of messing with something like that (when neither of us are techhies).  Do you feel pretty sure that is what is wrong?  Is it easy to change?

 

~Leena

[[Pa...]]

Hi Pam...yes, I asked my husband if we could change that but he is reluctant.  We just bought a new (cheap) computer, and he has spent hours trying to get it all set up and he does not relish the thought of messing with something like that (when neither of us are techhies).  Do you feel pretty sure that is what is wrong?  Is it easy to change?

 

~Leena

 

It caused me the same problem....does it really jump on you so you can't see what you're typing?  Here is a link to uninstall it.  I just unistalled mine and everything went back to normal with IE 7.  http://www.microsoft.com/windows/internet-explorer/support/faq.aspx

[[...]]

Hi Leena:

 

Pretty interesting about the potential gluten intolerance problem.  I can understand why you would be concerned about adding the supplements right now.  I take one and it did indeed rev up my symptoms at first.  Can you try just the diet first and see if that makes a difference?

 

ntw

[[ad...]]

Hi Leena,

 

Well it must be obvious by  now how important you've also become to us!!!!    Thanks for sharing all your experiences.  I know I'm learning from them. 

 

Just a thought...if you want to start a new topic on gluten intolerance, you could just copy and paste what you wrote in your previous posts, and save yourself the trouble of re-writing it all?  Since you wrote some pretty good stuff. 

 

Interesting about all the gluten stuff leena.  I had a colonscopy last year (had lost 25 pounds, but turned out to be from the Klon I think) which showed I had no "celiac disease" (gluten intolerance).  They can actually see that your cilia is not messed up. 

 

It'll be interesting to see what your cheek test turns out.  I've also noticed that many practitioners have their "specialty" thing...whether it's liver detox, candida, gluten, etc.  From what I've discovered in my past years of intense health research and experimentation (on self!) is that people like me who have some chronic health issues probably have a cornucopia of things going on.  There's kind of a list of things that need to be checked off......from balancing hormones to gut problems to heavy metals toxicity to nutritional deficiencies....and on and on. 

 

That's why last year I decided I HAD to get off all the drugs first.  Then I could really dive into all the other crap.  Now that I'm off the meds, it doesn't feel so overwhelming.  Although the protracted benzo symptoms has kind of thrown a wrench into my little "program".....  That's putting it mildly.  I'm having to be more patient, more plodding, and more tolerant of what is happening.  And....much more determined to get my health back. 

 

Anyways, just wanted to say again...glad you're here. 

 

adelia

[[le...]]

Hi...it is Leena checking in after being away for awhile.  I just wanted to give an update on my taper from klonopin.  I have been SO wishy washy about how I wanted to proceed forward, whether to slow down or speed up.  Because I have also been on this gluten free diet, it has been very difficult to tell where any symptoms I may be having come from. (In hindsight, I should have waited until I was finished tapering before I did anything else different...)

 

Bottom line, since I have finally sort of gotten used to feeling so bad I just decided that I am going to speed up my taper.  Today I took .10 mg in divided doses, tomorrow I will take .08 mg, then .06, then .04, then .02...and then on Sunday I will take ZERO.  It has not been unbearable to speed up, though I can definitely tell a difference in how much my muscles ache.  This has continued to be my main symptom, along with respiratory discomfort. Yesterday and today, I had to resort to taking some neurontin, and I still use the norco before bed if necessary.  But I feel so relieved just to have finally decided how to finish!  The wishy-washyness was just really messing with my brain!

 

A continued THANKS to all of you who have been helping me and all the other buddies go through the process!

 

~Leena

[[...]]

Hi Leena:

 

It feels good to have the decision made.  At least the agonizing about what to do is over.  We will be starting your Celebration Thread before long.

 

ntw

[[Pa...]]

Hi Leena,

 

I was wondering where you've been, I'm so glad you checked in.  I agree with ntw, indecision is exhausting, good for you for figuring out what you needed to do.  How is the gluten diet going, have you had any satisfying results?  Yeah, making changes while in withdrawals can be tricky but we do it all the time.  We're constantly trying to find a way to feel better, can't blame us for trying.

 

It won't be long now, I'm hoping once you're off of the drug and healed you can be free from the aches. 

 

Thanks for coming back, we missed you. 

[[le...]]

Hi NTW and Pam,

 

Thank you for the encouragement, as always!  Yes, I am glad the decision is made.  Of course, this morning when I woke up...and felt like I could hardly move, I began to question!  But I started down that road and plan to stick to the plan.

 

About the gluten free diet, I have to say I did not notice anything at all after 3 weeks, except that I was hungry all the time and ate more and gained weight (which was a real bummer).  I was supposed to send off for the genetic testing kit...and had actually ordered it, but I must have done something wrong in ordering because it never went through.  I am left trying to figure out whether or not to go to that expense.  The most intriguing part of what the nutritionist had to say about the possibility of my being gluten intolerant was how it might "fit" with other illnesses within my family...ie, my son's type 1 diabetes and my brother's schizophrenia. With Type 1 diabetes, in particular, there has been found a very strong link with the gluten intolerance gene.  And though there is a little less prevalence of the link with schizophrenia, it is definitely there.

 

The frustrating part about these symptoms (withdrawal symptoms) is that they are symptoms of so many other things...fibromyalgia, gluten intolerance, flu, lupus, and on and on. I look back at ALL the doctors I have been to who looked at me through their specialties...and then would treat me accordingly...to no avail.  SO, it does tend to leave me thinking it IS the klonopin, after all!  (which many of you have been saying...I don't know why it is so hard for me to just accept that!)

 

OK...splitting headache today (but the first one in awhile...hooray!)  So I will run!

Thank you again for your encouragement.  And thank you for mentioning the celebration thread!  I hadn't even thought of that!  It is amazing to think I am almost there!

 

~Leena

[[...]]

Hi Leena:

 

You are really looking at the sunnyside if you can celebrate the fact that your headache is the first in a while.  Sounds like you are really finding your way out from under the pile.

 

So the gluten free thing is kind of doubtful, huh?

 

ntw

[[le...]]

Hi NTW...It is hard to say if it is doubtful because I started the diet while going through klonopin withdrawals.  IF the diet were to work, I would not know because of the pain of the withdrawal symptoms.  I should have waited until I was done with the klonopin, but because I did not know how long the withdrawal symptoms would last...AND because I was so hopeful that maybe it was pain from both gluten intolerance and withdrawals, I went ahead and began the diet thinking maybe it could "half" the pain.  It didn't.  I gave the diet about 3 weeks, I think. 

 

I think it is too premature for me to assume that the gluten thing isn't a possibility and I am going to revisit it, even though I REALLY don't want to (I could live on bread...and cakes...and cookies...and pies, etc  ) 

 

The other thing that is hard about trying to go gluten-free...is when you start thinking about all the things that you may put ON your body (not just in) that contain wheat products.  I just can't be that knit-picky while I am dealing with withdrawals!

 

Thanks again for your words of encouragement!

 

~Leena

[[Pa...]]

I'm relieved to hear you might be giving credence to the POWER of the BENZO!  It might not all be benzo withdrawals, but the best thing about that is, you'll find out when you heal.  The best possible result will be it is and all of the other fears you've had or things you've been diagnosed with will be gone!  Plus if you accept this for now and stop searching for answers it kind of takes the pressure off.  Just sit back, relax (yeah right) and wait for the miracle to happen.  Hey, I've seen it so it's real!!

[[ad...]]

Hi NTW and Pam,

 

Thank you for the encouragement, as always!  Yes, I am glad the decision is made.  Of course, this morning when I woke up...and felt like I could hardly move, I began to question!  But I started down that road and plan to stick to the plan.

 

About the gluten free diet, I have to say I did not notice anything at all after 3 weeks, except that I was hungry all the time and ate more and gained weight (which was a real bummer).  I was supposed to send off for the genetic testing kit...and had actually ordered it, but I must have done something wrong in ordering because it never went through.  I am left trying to figure out whether or not to go to that expense.  The most intriguing part of what the nutritionist had to say about the possibility of my being gluten intolerant was how it might "fit" with other illnesses within my family...ie, my son's type 1 diabetes and my brother's schizophrenia. With Type 1 diabetes, in particular, there has been found a very strong link with the gluten intolerance gene.  And though there is a little less prevalence of the link with schizophrenia, it is definitely there.

 

The frustrating part about these symptoms (withdrawal symptoms) is that they are symptoms of so many other things...fibromyalgia, gluten intolerance, flu, lupus, and on and on. I look back at ALL the doctors I have been to who looked at me through their specialties...and then would treat me accordingly...to no avail.  SO, it does tend to leave me thinking it IS the klonopin, after all!  (which many of you have been saying...I don't know why it is so hard for me to just accept that!)

 

OK...splitting headache today (but the first one in awhile...hooray!)  So I will run!

Thank you again for your encouragement.  And thank you for mentioning the celebration thread!  I hadn't even thought of that!  It is amazing to think I am almost there!

 

~Leena

 

Hi Leena,

 

If there's one thing I could give you, from my year of being sick in 2008, and going to so many different doctors to see what could be causing the leg aching and muscle pains, it would be this:

 

When one is on even ONE DRUG, (and especially multiple drugs) -- those have to be eliminated before any kind of diagnosis of anything else can be made.  Especially related to muscle pain.  The drug sheet for Klon even says right on it. That one of the (many)  possible side effects is muscle weakness and muscle pain.   This is my opinion. 

 

Anyway, I like what Pam and ntw had to say about just accepting things as they are, and let your body get through it.  Something to that effect. 

 

You remind me so much of myself!  How just making a "decision" makes you feel better.  Geez, that's exactly how I tapered off Klon so quickly.  Well, it seemed quick at the time.  I try not to second-guess myself now, about whether I did it right or wrong.  The important thing was I got free of Klon finally.  I do worry about you going too fast though Leena, I'll be honest.  I just know from experience that things CAN get worse.  After off.  I know you can't know this now, but the symptoms you have now may not be the worst.  And I only say this because of your complicated situation and the muscle pain -- which was and still is sometimes my worst debilitating symptom. 

 

There are folks here at BB who say that being at such a low level of Klon wouldn't/shouldn't cause too many symptoms so why not jump off.  However, I can attest to the fact that I jumped off at around .06 mg Klon. and felt every bit of it.  It wasn't precise because I was dry-cutting.  But it was close to that.  And I felt an immediate difference  -- not only the next day, but also 3-4 days later (after the 50-hour half life had ended). 

 

Sorry about the wordiness here.  Hope you've got some reading time...hehe.  Leena, I hope you can just focus on the tapering process for a bit here.  Just focus on getting off the Klon, and then whichever med comes next (if any do).  Figuring out all the other stuff will be there when you're ready, it will come along.  Just so you don't get too overwhelmed, you know? 

 

adelia

 

 

[[le...]]

Hi Adelia,  I always appreciate hearing from you and never think anyone says "too much" to me.  I am all ears! Tomorrow I will be at the point where you "jumped off"...I am prepared, if I need to, to hold steady at a particular dose if I am having a really hard time.  I really do think, though, that there will be such an emotional relief for me having this done.  I think when I added the diet into the mix, it just made everything more of a "tangle".  I have already added the grains back into my diet and now I have myself second guessing on THAT.  I am sorry I never got that gluten thread started, but maybe I will do that when I am finished with the klonopin and try the gluten free diet again.

 

The muscle thing is such a mystery to me.  I would love if you could try to describe to me what your LEGS in particular feel like.  Though I still have that feeling, usually in the middle of the night, that someone is performing Indian rope burns (do you know what those are ? on my legs...the thing that is most bothersome is around my knees.  I can't say it is my knees or my joints.  It feels like it is the muscles surrounding and behind my knees.  At times I can hardly bend them, both because of tightness and pain.  Today I had to try to run to go break up a cat fight outside, and running is about impossible (which is really scary to me).  Those days when I was walking like crazy (in the beginning of my taper) are long gone. 

 

I guess I wonder...why is the same thing not happening in my arms?  Why does it seem so specific to my legs?  The pain in my neck and shoulders is still there, of course, but it is a different kind of pain.  I have gotten these strange little red spots on one leg, and find myself wondering if I could be getting shingles again???

Since I only had two lesions on my left leg when I had shingles the first time, and since I started on an antiviral immediately, I never really got to see what the lesions grow into because they started disappearing pretty quickly.  TOO many things for my mind to play with, you see?  That is why I feel like I need to manipulate the one variable that I can into oblivion (the klonopin!).

 

Oh I am so thankful for this website!  I keep trying to get my husband to read some of what goes on here so that he can see there are so many people who are struggling with this.  I know that he believes I am having difficulty, but somehow I need to feel "validated".  I am just so grateful for all of you who are willing to spend so many hours volunteering to help us! 

 

Love,

Leena

[[so...]]

near the jump off point.  That is good news. I'm guessing you are having some anxiety and second guessing yourself at this point.  I know I was.

You have worked hard to get this far , so when your ready just step off.

st

[[...]]

Dear Leena:

 

The leg muscle thing is weird.  I don't have the indian rope burn issue but I feel like the muscles of my legs are shortened.  It is way better than it was.  A year ago I staggered most of the time.  So it does get better, just takes time.

 

ntw

[[le...]]

Thank you, NTW, for sharing with me about staggering.  My legs (which even just a few weeks ago could easily walk 4 miles) feel like they are getting "crippled".  It is hard going up and down the stairs, hard getting up and down from a chair, and even hard turning in bed at night.  It helps me to hear the word "stagger" because I don't feel so far off from that.  And I guess (sorry Pam!) I still need some reassurance that klonopin withdrawal can be this bad! 

 

I am glad to hear that you are so much better!

 

~Leena

[[Pa...]]

Hi dear 

 

Never worry about asking for reassurance, this is what we're here for.  We're here to tell you it can be this bad, all of it.  There isn't a single part of your body that isn't affected by this.  Think about it, you brain controls everything in your body and what has the lovely Klonopin been messing with all this time?  Your brain.  Now lets add your central nervous system, what was Klonopin designed to calm, your central nervous system.  So now you have your brain which has been taking time off from it's regular duties because the Klonopin has been calling the shots.  (and not doing a very good job either)  Now you start to remove the drug and your brain has to step up and do its thing, there seems to be a learning curve here because your CNS is getting some really funky signals that are making you feel like crap.  I can understand this when I think of it in these terms.  This is one rotten ride, don't you agree? 

[[le...]]

Yes, Pam...that is a very helpful way to describe it.  Thank you for taking the time to do so.  I wish I had the time to sit in front of the computer and go back through all the different threads and read about everyone's experiences and learn more.  I don't seem to be able to understand the scientific explanations very well.  So I appreciate that you put it in "layman's terms".

 

And yes, this is one awful ride...but made bearable by the camaraderie of all of you!  Thank you!

 

~Leena

[[...]]

Yes Leena, Klon withdrawal can be this bad.  As I sit here typing my nose feels like it is trying to tie itself in a knot.  Who would have thought a person had that many muscles in their nose.

 

ntw