The Long Hold Support Group

[[He...]]

Oh no! I am having a crazy things happen.

 

Somebody help!

 

My sfx keep changing and trading with each other.

The following has occurred in only one day!

 

Parathesia goes away but low  back pain appears and stays all day.

Window for two hours where parathesia is gone but neck ache comes back.

Now parathesia and neck pain  are gone but low back pain is intense.

Had a horrible day except for the two hour parathesia window, however neck pain and low back pain spoils everything.

What the heck  is going on? 

Is this normal?

I have never been in such physical pain like this before.

Is this withdrawal pains?

 

Lynne, BeGood, I'm glad you are doing good.

 

Anne and Lizagal, I hope tomorrow will be better for you. Seriously, I am feeling your pain!  :'( Hang in there!  I hope you both get some extended relief very very soon.

 

[[ly...]]

 

Hi Heathcliff,

 

So sorry about your problems/pain.  Waxing and waning of sxs is a def pattern.  I've read that cuts of V take 9 days to fully appear but I don't have experience with it.  I've had similar comings and goings with my xanax taper - even had something entirely new appear 5 wks into a hold and it's still hanging around on a low level.  I hope you get relief soon! 

[[fr...]]

  Heath, Lynn is so right. These pains come and go.  I have bad knees and spine and some days the pain in my knees is awful and then for a few days I hardly feel it.  The only s/x I seem to not be able to get any relief from is the burning neuropathy in my tongue, urinary area, feet.  That just will not go away.  Also have had tinnitus but been blessed that it is low level most of the time.  Nausea also comes and goes.  Anyway, have you tried tylenol or advil, this will help along with heat or ice.  Hopefully today will be better for all. 

[[be...]]

Heathcliff, welcome to another reality of benzo Recovery, our sx's will wax and wan, and just when you feel you have hold of the situation, lo and behold here comes another one. The way I look at it, since this medication basically put our Brain to sleep, it is now trying to wake up and in doing so, all these things that are connected to the Brain is fighting to get its rightful place back, and our poor Brain is doing the best it can. So hold on for the ride, I have had many varied blips also, but nothing like my first two tapers when I actually trashed my Brain by going too fast and doses too much. Like Free said taking some OTC pain relieve will help, and Lynn also suggests and I am a firm believer, Distract, find something that keeps your focus off of what is going on, sure it won't go away, but I can tell you from the "DISTRACTION QUEEN TURTLE, IT HELPS ALOT".We must find something to get into and take the focus away from how very horrible this Journey is, this does not happen overnight, but you will be mildly surprised as I was it helps a lot. Have the best day you can. And to all others also.  

[[an...]]

Hi Heath,

 

So sorry that you are in pain.  It does seem that when one symptom resolves, another one will take its place.    Lynn, Free, and Begood have given some good advice. Hang in there. With valium it takes longer to feel a cut so that is most likely what you are experiencing.  I am sure you will see some improvement soon.

 

Take care,

 

Anne 

[[Ho...]]

Oh no! I am having a crazy things happen.

 

Somebody help!

 

My sfx keep changing and trading with each other.

The following has occurred in only one day!

 

Parathesia goes away but low  back pain appears and stays all day.

Window for two hours where parathesia is gone but neck ache comes back.

Now parathesia and neck pain  are gone but low back pain is intense.

Had a horrible day except for the two hour parathesia window, however neck pain and low back pain spoils everything.

What the heck  is going on? 

Is this normal?

I have never been in such physical pain like this before.

Is this withdrawal pains?

 

Lynne, BeGood, I'm glad you are doing good.

 

Anne and Lizagal, I hope tomorrow will be better for you. Seriously, I am feeling your pain!  :'( Hang in there!  I hope you both get some extended relief very very soon.

 

Heathcliff,

 

Back and neck pain are pretty common. My muscles are always tight during my taper but the pain and spasm wax and wane during my cut and hold cycle. My spasms tend to get worse about 8-10 days after a cut. Then they start to slowly improve. Unfortunately it's just part of the deal, try a heating pad or some gentle stretching, or ibuprofen or Tylenol if it's really bad.by now I'm used to it and just chalk it up to withdrawal so I try to not focus on it, which makes it worse for me. I also tend to clench my jaw in my sleep so I got a night guard.

 

Hope

[[Ki...]]

Ditto- mine seemed to follow my cut rate to a T- muscle aches and headaches the day after my microcut, and the next day it resolved pretty well. So I had my advil liquigels and my magnesium rub plan every other day. Its only been 3 months for me since finishing my crossover but after holding a week and restarting at an every other day microturtletaper its pretty predictable to have pain every other day. I hope yours straightens out and lightens up soon.

[[Va...]]

Heathcliff, I get what feels like a kinked neck 4-5 days after a cut and it takes a few days to resolve. During the hold the pain did last longer because I had cut too fast and really disrupted my CNS. The neck pain persisted so long I even had an MRI to rule out a disc problem which it did and the pain eventually went away. Hope you feel better soon.  --V

[[ba...]]

I am on xanax. Had ativan years ago for 3 days, it did not agree with me, likewise valium also xanax xr was pretty bad.  Someone suggested gradually crossing over to klonopin to make the wd less intense. I have never had it. Thoughts? I would of course, consult with my doctor, but just wanted input about klonopin vs xanax.

[[Va...]]

I am on xanax. Had ativan years ago for 3 days, it did not agree with me, likewise valium also xanax xr was pretty bad.  Someone suggested gradually crossing over to klonopin to make the wd less intense. I have never had it. Thoughts? I would of course, consult with my doctor, but just wanted input about klonopin vs xanax.

Liza would be the one to answer your question. I don't believe she's had very good luck with K. --V

[[ly...]]

Badd, I'm not having an issue on xanax - other than the underlying nightmare!  But I didn't have a problem on XR either.  In fact I had a little trouble going from XR to regular.  I've never been on K or V.  Hopefully someone here will have switched and can offer some insight.  Hope you are feeling a little better.

[[li...]]

Baddove I'm in the situation I'm in I believe because I was crossed over to klonopin over a year ago and have never stabilized on it.  I was doing really well on the Ativan, but was told if I wanted to taper I needed to cross to K or V.  I had taken K in the past and thought I knew how it would be.  I've been holding for 5 months and am way worse the last ten days and have no idea what to do.  I truly believe this will be the death of me at this point.

 

I think this was an Ashton protocol years ago that doctors are still following for the longer acting drugs.  IMHO I would stick with what your brain knows.  In my case it was a huge mistake.  I even talked to Baylissa Johns last summer who wrote Benzo Wise and works closely with Ashton and she said they never would have recommended the crossover.  I was hysterical when she said that--THAT WAS ASHTON'S PROTOCOL!!

 

So look at Lynn and see how well she is doing because she was never crossed.  I don't know if I will recover from it.  Lainey I believe was crossed over too.  I know another woman on another forum who was crossed from A to K and she did stabilize rather quickley but took her a year to figure out that she can only cut .01 ml from 200 ml of milk every few days.  At that rate it will take her 8 years to get off, but she is functional. 

 

I pray for all of us for whom the long hold isn't working after 5 months.  I pray it's just a matter of time, but when it's getting worse, and people on other forums are telling me to updose to pull out of it, i don't know what to think.  My brain is mush now

 

[[Pl...]]

Baddove I'm in the situation I'm in I believe because I was crossed over to klonopin over a year ago and have never stabilized on it.  I was doing really well on the Ativan, but was told if I wanted to taper I needed to cross to K or V.  I had taken K in the past and thought I knew how it would be.  I've been holding for 5 months and am way worse the last ten days and have no idea what to do.  I truly believe this will be the death of me at this point.

 

I think this was an Ashton protocol years ago that doctors are still following for the longer acting drugs.  IMHO I would stick with what your brain knows.  In my case it was a huge mistake.  I even talked to Baylissa Johns last summer who wrote Benzo Wise and works closely with Ashton and she said they never would have recommended the crossover.  I was hysterical when she said that--THAT WAS ASHTON'S PROTOCOL!!

 

So look at Lynn and see how well she is doing because she was never crossed.  I don't know if I will recover from it.  Lainey I believe was crossed over too.  I know another woman on another forum who was crossed from A to K and she did stabilize rather quickley but took her a year to figure out that she can only cut .01 ml from 200 ml of milk every few days.  At that rate it will take her 8 years to get off, but she is functional. 

 

I pray for all of us for whom the long hold isn't working after 5 months.  I pray it's just a matter of time, but when it's getting worse, and people on other forums are telling me to updose to pull out of it, i don't know what to think.  My brain is mush now

 

Liza.... This terrifies me I'm in the same boat..... I don't know what to do..... How much was that other woman taking of k? Ill never be able to survive this especially after reading that.... My heart sank..... I thought that's what they do.... They put you on a longer lasting one.... I could not taper off ativan at all.... It was horrible...

 

There are other people who have crossed reinstated and have gotten better...so I don't understand....alot of those people and even others who didnt cross said they never stabilized really when they were tapering or even before they started.....

 

There are tons of people on here who cross over.....then that means they will never do well either if thats what baylissa says....I'm so scared as I've been so sick for so long....

 

Please any encouraging words from anyone..... Please..... I can't take this anymore...

[[li...]]

Please--don't let me terrify you.  I got off klonopin before and we both will this time too.  I believe we have just shocked our bodies and need to be slow and steady and give it time and not stress.  It's the klonopin that's making me so mad I could spit.  There are a million crossover success stories.  Read this for inspiration (BY THE WAY V--I CAN'T FIGURE OUT WHEN HE DID HIS 6 MONTH HOLD, BUT HE DEFINITELY DID A SMALL UPDOSE--READ THIS BECAUSE THE WAY I'M DISSOLVING MY TABLETS IN 60 ML, I WOULD HAVE TO INCREASE MY LIQUID TO 600 ML TO GO AS SLOW AS HE DID, WHICH IS FINE BUT I DON'T KNOW HOW MY BODY WILL RESPOND WHEN THE TIME COMES)

 

http://www.benzobuddies.org/forum/index.php?topic=155014.0

[[ba...]]

Baddove I'm in the situation I'm in I believe because I was crossed over to klonopin over a year ago and have never stabilized on it.  I was doing really well on the Ativan, but was told if I wanted to taper I needed to cross to K or V.  I had taken K in the past and thought I knew how it would be.  I've been holding for 5 months and am way worse the last ten days and have no idea what to do.  I truly believe this will be the death of me at this point.

 

I think this was an Ashton protocol years ago that doctors are still following for the longer acting drugs.  IMHO I would stick with what your brain knows.  In my case it was a huge mistake.  I even talked to Baylissa Johns last summer who wrote Benzo Wise and works closely with Ashton and she said they never would have recommended the crossover.  I was hysterical when she said that--THAT WAS ASHTON'S PROTOCOL!!

 

 

 

So look at Lynn and see how well she is doing because she was never crossed.  I don't know if I will recover from it.  Lainey I believe was crossed over too.  I know another woman on another forum who was crossed from A to K and she did stabilize rather quickley but took her a year to figure out that she can only cut .01 ml from 200 ml of milk every few days.  At that rate it will take her 8 years to get off, but she is functional. 

 

I pray for all of us for whom the long hold isn't working after 5 months.  I pray it's just a matter of time, but when it's getting worse, and people on other forums are telling me to updose to pull out of it, i don't know what to think.  My brain is mush now

 

I am dropping the idea. My doctor, who knows my physiology so well, has never thought crossing over or adding meds would work for me. I am hyper sensitive to medication, and have some physiological conditions that have to be considered. Thank you for your input. Forward with the xanax until the end. I just wanted to run the idea by, as I have never used klonopin.

[[St...]]

I am in the process of crossing over to valium from Ativan....I could not taper the Ativan at all, I was up to dosing six times a day and four hours apart and every time my body would adapt and start having interdose an hour before dosing time...no way I could keep doing that I would have to wake up every few hours all night long.  Some of us have no choice in this....the crossover is difficult, no getting around it, I am in my last two doses now and still lots of sxs.  But I think we all have to do what we have to do, and I have read that Baylissa has said the same thing, there are different circumstances for everyone, she might not have recommended the crossover for you Liza, but she might for other people.  Ashton herself said to not crossover unless you are unable to taper from your current benzo.  I am not criticizing you at all, I feel for you so much in your situation, it is so hard to be so debiliatated everyday, I know, I am in rough shape too...I am merely trying to assure people that there are sometimes a crossover is needed.  Much love and hugs to all, I hope better days are ahead for all of us....

[[Va...]]

Please--don't let me terrify you.  I got off klonopin before and we both will this time too.  I believe we have just shocked our bodies and need to be slow and steady and give it time and not stress.  It's the klonopin that's making me so mad I could spit.  There are a million crossover success stories.  Read this for inspiration (BY THE WAY V--I CAN'T FIGURE OUT WHEN HE DID HIS 6 MONTH HOLD, BUT HE DEFINITELY DID A SMALL UPDOSE--READ THIS BECAUSE THE WAY I'M DISSOLVING MY TABLETS IN 60 ML, I WOULD HAVE TO INCREASE MY LIQUID TO 600 ML TO GO AS SLOW AS HE DID, WHICH IS FINE BUT I DON'T KNOW HOW MY BODY WILL RESPOND WHEN THE TIME COMES)

 

http://www.benzobuddies.org/forum/index.php?topic=155014.0

In one of his posts he stated he had held for 6 months twice. I know one of his holds was just prior to coming to BB in a "suicidal" state where he learned to micro taper and was fine after that.  --V

[[an...]]

I just read the Crash's story.  Very interesting.  It seems that once he started his micro taper, he was fine all the way down. Two months off, and he had no symptoms.

[[li...]]

Anne--that didn't happen for me in my microtaper--it was hell just getting down 5% so I'm praying this hold will set me up like him. Right down it feels like 💩🔥😖

[[ly...]]

 

I think Crash updosed a few times and had some 6 month holds to get stable.  Liza, did your updose on A get you stable?  Have you tried another updose?  I think Crash did well because he was in a good place when he started the micro(?).

 

This must be very, very difficult for you, lainey and free and the rest who are having such trouble.  There has to be something that can be done.  Are any of you thinking of updosing or crossing?  I have no idea what I would do.  I'm sure that I would be out of my mind.

 

I've read of some that crossed and had to cross back.  When I was first on BB I was all set to cross to V (protocol) and then decided to just stick with what I am used to unless I crashed and burned.  Dumb luck.  I'm even afraid to go to liquid or change anything at all.

[[an...]]

Liza,

 

Lynn is correct.  Crash said he stabilized before tapering.  I did not consider crossing over because I knew my doctor would not go along with it.  My preference is to stay with the drug I know.

 

Anne xoxox

[[He...]]

 

Hi Heathcliff,

 

So sorry about your problems/pain.  Waxing and waning of sxs is a def pattern.  I've read that cuts of V take 9 days to fully appear but I don't have experience with it.  I've had similar comings and goings with my xanax taper - even had something entirely new appear 5 wks into a hold and it's still hanging around on a low level.  I hope you get relief soon! 

 

Wow Lynn, for someone who says they don't have much experience with Valium cuts you sure are right on Target!

Today is day  9 of my .05 cut. I guess I can be a study in the norm??

Ok so maybe yesterday and today are the worst and I'll feel some what better tomorrow. If not, well atleast I know what I am experiencing is par for the course. Thsnks so much for your support and that info. It helps me to hang in.

 

Heathcliff

[[He...]]

I just read the Crash's story.  Very interesting.  It seems that once he started his micro taper, he was fine all the way down. Two months off, and he had no symptoms.

 

 

I started a micro taper a short while ago just after holding for two months and I am certainly not having it go easy.  I thought it would, but no such luck I also cut only .05. But waiting to see if side fx ease up or get worse. 

 

Heath

[[He...]]

Well I would quote all of your wonderfulresponses to my side effect pain and all your well experienced insight, but then I would have to take up an entire page here!

So I'll just say THANK YOU! FREEME, BEGOOD, ANNE, LYNN, HOPE,  VALLEYUM, KITTYBEANBAG, LIZAGAL,

 

I will try the Tylenol.and I am using the heating pad. Sorry to hear that some of you are experiencing the same horrible neck pain I am having, but at least I know it is a common side effect.

Distraction is right.

Today my hubby said, " you are staying at home yourself too much" and he literally dragged  me out of the house! And It did help.

If I am going to feel horrible, it won't make me feel any less  horrible to stay in the house, and it certainly won't make it any worse to get out if the house ......and it did distract me. So I am going to try to get out of the house more.

Seems like BeGood has been telling me to distract myself for a long time now. I sure do try!

 

Heathcliff

 

[[He...]]

Pleasebethere, Lizagal

I AM BY NO MEANS IN ANY PLACE TO GIVE YOU ANY ADVICE on what you should do as far as switching the drugs you are on presently to assist you in a taper.

I was originally on Valium so I did not have to switch drugs to taper. I have no knowledge of my own about switching drugs in order to taper.

 

But I read your posts and felt so badly for you. So I decided to look at the Ashton manual and all of the schedules she lists to get off of various benzodiazapams.

 

From looking at her schedules, I see that prof Ashton shows different ways to cross over to a long acting drug to make tapering easier. But every one of her cross overs are to VALIUM.

 

Have you looked at the Ashton manual. It is on line.

 

I hope you can find a very knowledgeable doc who can help you with deciding what to do. I have had some pretty rough days myself but not for as long as yours.

 

Good luck! I feel for you!  I Hope you find relief very soon no matter what you decide.

 

Heathcliff