What to do? Updose slightly after a long journey?SXS keep worsening!

I've been at this for well over 2 years.  Well, longer if you take into account the year or two that I reduced on my own.  I'm spent!  I've lived every day with hope and the desire to push forward and conquer. But now? I'm getting slammed with so many additional sxs that seemed to have grabbed me at the 1.25 mark and have been relentless!

 

To name only a few, I've been slammed with Crazy muscle pain, insanely tight abdominal muscles that make it difficult to breath (this one is scary!), pulse in my stomach that is driving me crazy!  I also have Leg, back, hip pain... all of this on top of the symptoms I had gotten used to... dizziness, GI issues, agoraphobia, insomnia, etc.  It just wont end! The feeling as though I can't expand my stomach and breath is insidious!  You know, because breathing is a flipping necessity!!! Waking is a chore, and I can't find a position to sleep, watch TV, or do anything because of stiff neck and back.

 

The thought of updosing feels like such a defeat because I've come so far.  I just don't understand why I'm having such a horrible time! Trust me, I have a pretty high pain threshold! But this is debilitating.

 

But here are my concerns:

 

1.)  What if updosing only relieves the problems for a few days, a week or two, and I'm back to having the same symptoms but also back to tapering from a higher dose!

 

2.)  Holding didn't work.  I held at 1.0 mgs for a little over a month with no change or improvement whatsoever!

 

3.)  Does anyone have experience that these side effects get any better after decreasing more?

 

I am truly at a loss.  I had all these hopes of getting down to 1.0 mg (haven't been this low in 20 years), and it's just been misery.  Every muscle aches and hurts.  I have lost so much weight, look 10 years older, and my body feels like it's 90!  Oh, and forget exercise!  even just mundane tasks like powerwashing a tiny portion of a deck, lifting flower pots, walking for longer than 10 minutes, cause EXTREME muscle fatigue and MORE pain!  I ner thought I'd say this.... EVER.... but I'm at the end of my rope with this. 

 

Thanks for listening to my rant.  Trust me, I could go on but don't want to bore you all out of your minds!  I'm just feeling a bit hopeless right now and I'm not accustomed to feeling this way!

 

Thoughts?  Suggestions?  Advice?  ALL and ANYTHING are welcome!

 

Fondly,

Lori

 

 

Okay... I know that was long winded   I guess I'm desperate 

Well.... going to updose to 1.25 (possibly 1.5) for a few days and pray for the best! I can't live not being able to breath!

Hey Lori..

 

Not long winded at all.. I hear you.. Im worn out too...

Looks like you know the drill with what may or may not happen with various choices...  I was lucky in that it was ok for me to fluctuate my doses a bit, or dose correct if I had gone too fast or big.. 

 

Not a bad Sig btw..!! Lookn good..  No comment on speed though, thats the one we all have to work out with our bodies.. Im a slow one, lol.. hell, at the end I had to wait months between cuts, and that was tiny Valium cuts..!!

 

Anyways, If you do dose correct, -I hope it goes great for you, and you get a break from the worst of it..

 

All the best

 

 

 

Hi Lori,

I am sorry you are still having such a hard time.  I know the thought of up dosing is not what you want but your body may need that.  I would go back to the last dose that I was stable at and once you are stable again, I would start tapering again slowly.  Maybe the DLMT.  It will mean such small cuts that maybe your body and brain will adjust and it will help your body and mind heal.

 

Please do not lose hope.  You have been at this a while but remember you  have come a long way from where you were and also you were on this drug for 20 years and your body  is so used to it that it may take longer than you wanted to get off it.

 

Slow but sure ......

 

Take care of yourself. 

 

Julia

Hi Lori...I know when you are in the throes of misery everything seems hopeless and fruitless....but looking at your history....wow! you have come a LONG way. It's taken me 2 years just to go down by 1/2 of .33 clonezapam...so try to be super proud of that-you are winning this war for sure!!! Maybe the cuts caught up? Sometimes cuts would not catch up to me for a couple months and then BAM, had a horrible couple weeks/ months before leveling out. I have always been loathe to lose precious ground I have made by updosing...but you might try just a smidge and see if it helps after a couple days. No shame in doing what you need to do to function. I am much better at not beating myself up or sticking to a rigid taper schedule. My body is my best friend-it knows how to heal itself-sometimes we just need to love it and get out of the way. Big hugs!

Lori,

 

You are doing great!  A little bit more to stabilize is going to be fine.  Especially having your son at home you need this.  Don't let it get it you down.  I've had to do it and it wasn't my favorite but my body was happier and I feel like I can continue on my taper now.

 

Best of luck to you!

PP

Thank you all so much! I truly appreciate all of your kind words!

 

After looking at my own signature, I really did keep cutting even when I was feeling crappy. I only held for 4 days to stabilize in April and cut again anyway. I was on a mission to get to 1 milligram which was so foolish!

 

I upped my dose yesterday and could not believe the difference I felt in one day! I don't want to jinx it! I'm going to stay here at 1.35 for two weeks and then start DLMT. In fact, I'm going to start it while holding here. Probably will start tomorrow. And from this point forward will be going much slower.

 

Again, thanks so much to each of you who took the time to read my post and respond!

 

With gratitude,

Lori

 

So glad you are feeling better!!!!  You sound like you have a good solid plan.  :)

Well, updosing doesn't seem to be working. Sure the dizziness is pretty much gone. However, the horrible neck and shoulder pain is relentless! It wakes me all throughout the night which is a real joke since insomnia has been gone for over a month. Additionally, the tightness in my abdomen is relentless.

 

At this point I wonder if these side effects will remain for the duration of my taper. So frustrating! I'll give it a few more days at 1.35 but if this doesn't let up I don't know what to do.

 

Do I quickly go back down to .95 (where I was last week) and just deal with this?

Updose to 1.5 and try that?

Taper from the 1.35?

 

Again, I simply didn't see this coming. I'm worried about my physical health! To add insult to injury, acid reflux and dry cough have been relentless. Oh, and my Cologuard test just came back positive. Right about now I'm convinced that I have both lung and colon cancer.

 

Lori

 

I am so sorry...it is hard to know what to do-but hopefully you will hear from some of the more experienced on this site (and those that are off the benzo's). I am kind of in the same boat. I had to switch brands and it has been a wretched 4 months....very bad dizziness and a host of other WD I haven't even had before. Just saw my Dr. last night and she told me to updose (I have already a small amount which didn't seem to do anything-but maybe it just wasn't enough). I HATE the idea of doing it because I had to crawl and scratch my way down to .16....but like you....this has been relentless and I can barely make it through my days (and I run a business). let me know how it goes if you go up more....

Lori

 

I know it sucks. The muscle pain. All of it. I’m so sorry. I’m here for you. Do what you need to do to feel better. You can do this. It just takes trial and error.

 

Do you have access to hot water. A weighted blanket?  Also. I am here for you to text or call. I’m here. Thinking of you

Kristin

Thanks everyone! The updose to 1.25 helped immensely! The tightness in abdomen has been gone for 3 days now as well as all dizziness. Neck and shoulders are still sore but that's to be expected.

 

Going to stay at this dose for another week. Will the resume my taper using DLMT and at a slower pace. Looking back I started making cuts based on a time frame versus symptom based and it really caught up with me.

 

I'm currently at my sisters beach house and actually enjoying it! What a concept!!

 

Hope all are doing well!

 

Lori

So glad to hear you are doing better! On the neck and shoulder pain...I also had unrelenting pain so I have been going to a massage therapist once a week. I can only afford 1/2 session, but wow-in just 2 weeks it is sooooo much better!! Might try that...

So glad to hear you are doing better! On the neck and shoulder pain...I also had unrelenting pain so I have been going to a massage therapist once a week. I can only afford 1/2 session, but wow-in just 2 weeks it is sooooo much better!! Might try that...

 

I'm going to look into the massages. However, right now the tightness in my abdomen is the worst! It makes it hard to breath! Made even worse by eating. It's a crazy symptom! Is this what they call Benzo belly? In 3 weeks I look 5 months pregnant and I only weigh 100 lbs! This is a horrible new side effect for me! If I didn't just have a abdominal CT scan on May 1st, I'd think I had a tumor the size of a bowling ball in there! Crazy noticeable at my height and weight!!

 

My greatest fear is.... am I going to have THIS for the duration of my taper? Seriously? Enough is enough already!  Ugh! So frustrated!!!!!!! 

 

Lori

Just to update you:

 

 

Hello all!

 

I have refrained from posting because I didn't want to be negative. Oh, how I'm so tired of complaining! In a nutshell, the updose really only helped for about 3 days. My stomach is back to being so incredibly tight! But here's an odd one, yesterday, after over three weeks of crazy pain, my shoulders and neck just completely relaxed. Of course I probably just jinxed myself!

 

I simply can't make heads or tails of all of this. My taper was symptomatic from day one but I had been experiencing interdose w/d for years and I honestly was prepared to continue to feel like crap especially tapering such a short acting Benzo. But this past month has just been horrible. Honestly, it's been my worst since I sarted this well over a year ago. I'm truly perplexed. Again, I never expected a walk in the park, but these physical sxs are rough!

 

I had my 3 month check up with my doctor on Thursday. He wants me to put my taper on hold and for me to "try to enjoy" my summer! What the heck? I just ignored him. Does he really think that uts THAT easy? As if just holding at a dose that I'll never be "stable" at is going to help me have a great summer? These doctors have no clue! .... And he's one of the "good ones" who has allowed me to 100% control my taper rate. Don't get me started. I guess he means well. Maybe after 3 years (that's how long we been either discussing it/working it out/or tapering) he's worn out too!

 

So my dilemma.... I went up to 1.3-4 but granted, I wasn't consistent. However it was always higher than the .95?i had gotten down to. I'm just not sure where to go from here. Today I'm st 1.25 and will probably do this tomorrow as well. I wasn't sure if I could just go back down to 1.0 or .95 and keep plugging along since I had held at 1.0 for a month. Or once you updose for any amount of time, does your body readjust to a higher dose that quickly and you have to go from there? Who knows?

 

I hope you're all hanging in there! Hopefully my next post will be more positive. I'm just exhausted and running out of patience!!!!  I thought I'd be finished in about 2 months. Not a chance!! Dammit!

 

Fondly,

Lori

Hi Lori,

How is it going? What did you decide to do? I was reading your posts and your taper and can't believe how well you've done, tapering down from xanax. Have you thought about crossing over to valium? That's what I did and it allowed for much smaller, and easier, cuts. You're doing great!!

Hi, Lori.

Yes, I also am worse lower, but am on valium and also clon, since i crossed over... crossed half back.  Nuts, I know.

But have been symptomatic for 2.5 years now=-  but it was an AD that screwed me up ;(

Kind of tempted to take like 1/4 of a .5 clon and see if it works.  Like you, I fear it would help like a day or two and then not.

 

I think xanax is a hard one to get off.  Then again they all seem to be.

 

New symptom here: hypersalivation.  Yup.  Weird.

 

I find the worst symptoms are the mental ones that are debilitating. 

Vibrating/ tremor/double vision/ tinnatus  all pale compared to the mental ones for me.

 

Wow, what a photo

The one month hold at 1.0 mgs was brutal. The updose gave me a few really good days here and there but they did not last. Muscle issues came back with a vengeance! The only thing I can think of is that after having been on this for decades... most of which were at 4.0 mgs, that my body is pretty much screaming to just continue to taper no matter how bad I feel. There's no going back now.

 

I guess I was looking for a small window of being functional as this taper has literally consumed the last 2+ years of my life.  My body and mind are exhausted! But the reality is that I'm most likely never going to feel much better until I'm off of this completely. I simply wanted a small reprieve to regroup and recharge.

 

I was hoping to have just a little bit of quality time with my son while he's home from college. I'm so tired of feeling so crappy and being such a shred of my former self! This is NOT how I like my son to see me!  This may very well be the last summer that he lives with us. I also didn't want him to be put out by having to listen to me. Uts not fair to him. But at the end of the day, I have to concentrate on moving forward with this horrible journey and pray that by this time next year, I'll be out there among the LIVING again!

 

Time to return to combat!

 

Hope all are doing well!

 

Lori

Hi Lori,

How is it going? What did you decide to do? I was reading your posts and your taper and can't believe how well you've done, tapering down from xanax. Have you thought about crossing over to valium? That's what I did and it allowed for much smaller, and easier, cuts. You're doing great!!

 

Thanks for the encouragement! Valium is not an option. Paradoxical reaction. Tried it over 2 years ago when I was going to start this journey. One pill and I didn't sleep for 4 days! It was crazy. Long story. But at that time I had no idea that a direct taper was even an option. I thought Ashton was the Bible and I had lost the battle before even starting. I waited a year to regroup (but cut out 1 mg on my own during that time).  So here I am, tapering Xanax alone. It figures that I had to be on the shortest acting Benzo out there!

 

Nevertheless, thanks for your kind words.

 

Best,

Lori

I wish there was an option for you to cross over to a longer acting benzo. Xanax is tough, as you well know. Go slow and make sure you feel stable between cuts.....you're going to get there. I hope you keep posting with how you're doing.

How are you doing, Lori?

 

I've never been stable, either.  Barely functional.  But most people who updose seem to say does not work, altho someone I know did updose and it took a few weeks then they felt way better.  They updosed again and are hanging there.

 

For some of us nothing much seems to work, I think.  I also have been on 4 decades about.... hard to know if my body really doeson't want the med or really DOES want it.

 

I stupidly cut at a time when hugely unstable and that is how it has been past 2.5 years.

 

i just updosed, it will take more than a few days.  please take care.

 

Wanted to give an update.

 

After the updose last month I was able to go back down to 1.0 very easily. The updose simply di d not offer much relief.  However, I'm doing better than anticipated. Im sure I will always have a few symptoms throughout this taper and I'm okay with that. At least they aren't as bad as they were last month.  I'm still hanging in at 1.0 mg and actually doing okay. I'm starting to notice than I really need to watch my diet and stress level. When I do, my symptoms are better. I've actually had a few days where I have felt pretty much symptom free which has been nice! 

 

I'm at the point where I feel as though my body is telling me to keep pushing myself and get OFF this poison!  Im planning to make more reductions this week. I'm convinced that the only real healing will happen once I'm off. I'll continue to go slow and hope for the best. It's been a long journey and there's no turning back now.

 

Hang in there everyone! This CAN be done!!

 

Fondly,

Lori

Hi All,

 

Hi Lori,

So glad you posted.  Have been thinking about you alot.  I am glad things are better for you.  I am hanging in there.  Planning to make a cut on Wednesday down to 2.0 mg.  I hope it goes well.  I have been having symptons for a while and I can not keep waiting for them to stop, as they are actually increasing in different ways.  I wonder if this hold has been too long... just do not know.  I want to be off this med so bad but know I have to do this in a safe way.  If I could I would just stop taking them but I know that is NOT an option as that is what put me in the mess I am to start with.

 

Everyone take care.