The Long Hold Support Group

[[be...]]

Love you Anne and everyone else here even though I don't post much. I intend to be a rock star after holding long enough like Valley but right now things are still rough and I don't want to be too negative. As y'all know, this ain't my first rodeo and even microtapering had me psychotic so I'm fine holding a while longer.

Blessings

Liza G

[glow=red,2,300]Liza, post whenever you want, that is why we are here, your thoughts are important, and we know that everyone has bad times, and always remember you are a "ROCK STAR" already Sista'. [/glow] 

[[be...]]

Moya, so happy to hear that your up dose helped you get to a better place, I had to do it during this taper, and even just a small one, it did help. What I have found is that sometimes things do get a little worse, but will get better, If I stop and think about what do I want, well we know I am not wanting to jump anytime soon for sure, but I do not ever want to go backwards, and the up dose did not waylay my taper only a couple of weeks. Best to you always My Dear Friend.

[[Va...]]

Folks, lets all love on each other, ok? No more to say about that.

 

AND I CANT PUT PICTURES IN HERE, it's so frustrating.

 

I am in day 3 of a wave, and of course, my inclination is to cut or change how I dose.  So I read Ashton again. I fit the criteria for being in hard wd.

 

I actually have been tapering for longer than my signature suggests, but was experimenting, so didn't count a start date until I went to a method that was not so terrible. I started tapering because the medication quit working (In December of 2015) and my doc kept bumping me up to compensate, and it did not help. I was back and forth until June 6, then started to taper. Have adjusted many times. Finally determined a dry taper worked best.

 

Anyway, during the waves, I get no relief from my symptoms with each dose. Sometimes I get  a break later in the day, not always. Essentially, intense wd effects all day, rendering me bed bound, or houseboud, and in agony . I was experiencing this long before the taper, hence I would start cutting or updosing. Trying to figure out how I was medicating wrong. Its a bad habit, and I'm still trying to stop it and be consistent. Only during the waves do I want to change how I dose. I'm afraid that the intensity of wd is due to over/under.  Working on that fear. Going over my diary, I seem to have 4 bad , then 2 better days, then 4 and so on. I also keep tinkering around with my doses, something you all have addressed, am still struggling with a dose plan, when it's not giving me any relief.  I will do better, it's just very hard  to dose when you know the med is not going to help you.

 

The only constant I have never altered is the wait time between doses.

 

Question: During the waves, the doses do not give me relief. As they near the end, my sxs kick up hard. Is this the correct definition of a wave?

 

On the better days, I get some relief from the doses, I still have numerous sxs, but I can actually function and do some of my normal life. And, on really good days, at the end of the dose, I get a "break." Not symptom free, not a window,  but it feels better than when I was on the med. I don't even think about changing how I am dosing on those days.

 

Is this typical? And, is my not getting relief and coming down so hard after a dose the true definition of a wave?

 

I actually have been tapering for longer than my signature suggests, but was experimenting, so didn't count a start date until I went to a method that was not so terrible. I started tapering because the medication quit working (In December of 2015) and my doc kept bumping me up to compensate, and it did not help. I was back and forth until June 6, then started to taper. Have adjusted many times. Finally determined a dry taper worked best.

 

I have company coming from out of state in a week, and a dental procedure that will be intense in a week and a half. I want to be stable enough to get through those events. Is staying on the current taper the best way to achieve that? I suspect it is.

However, it doesn't feel good, so yada, yada, yada.

 

 

 

As my therapist has said:

 

“Discomfort avoidance is the common thread that binds all anxiety disorders.”

I know it’s hard to step back and analyze this, but there is important truth here. 

First, it means that anxiety is based on anticipation.  Watching.  Monitoring.  Checking. 

It is about the future, bad things happening outside, bad things happening inside, unwanted things, unpleasant things. 

 

When you lose that, you are vigilant about anticipation: Will it come today?  This hour?  Will this Xanax dose work, or suck?  Will I take too much, or too little?  Can I get outside to exercise?  How will sitting here affect it?  It’s like a constant duality or contest between you and “it.”  Discomfort avoidance.

 

Mindfulness is about being in the moment (no anticipation, no monitoring or watching). 

Just observing what is happening, and accepting it without any judgment or evaluation whatsoever.  It just is.  Now.

This moment.  Unfortunately, this is hard for you because your mind wants to quell unpleasantness

(discomfort avoidance) and seek pleasantness or relief.  Can’t blame you, but it isn’t working.

Quit trying to titrate your medication, shaving off bits and pieces and seeking the “right” formula.

Quit (if you possibly can) trying to stop or start things within you.  It just is.

 

This is not giving up or giving in.  It is the way.  Right now, as you read this, can you quiet your mind’s evaluative part and just be? 

 

That would mean you’d probably close your eyes and clear your head and let sensory data just flow in and through you. 

(physical sensations) all devoid of any analysis, conclusions, if-this-then-that thinking. 

These things just “are;” you are in the moment.  They mean nothing

Hi BD. It's a good sign that you do get some "functional" days. It is annoying when the days are bad though. All I can really offer is to hold steady with dosing and keep everything consistent. Sxs should start to fade if everything is held constant for a while. Windows should also start opening. Based on your description, I wonder if inter dose withdrawal is an issue?  Anyway, try not to overthink the process. It plays out regardless of whether we worry about it or not. Do what you can on good days and go easy on yourself on the bad days. You should notice very gradual improvements. The improvements are not linear as you have already found out. Some days are better than others and it will be that way for a while. Hang in there!  --V

[[Va...]]

Hi all. My daughter's tonsillectomy must have been successful. She was snap chatting the minute she woke up and ran off with her friend as soon as she got home lol.

 

I'm a little annoyed that I can't get my Valium scrip because the office computer system is down and "there's no way they can write a scrip without looking at the records on the computer". I guess tomorrow morning's dose will not happen lol. It's always something with these stupid benzos. I'll be so glad when I'm off and don't have to worry about this kind of issue any more. Am I the only one who seems to be jinxed when it comes to refills?  --V

[[be...]]

No Valley I think we all have tales of woe when it comes to our scripts, but I solved that problem, I have a stock pile of Valium just in case the factories stop making them or the FDA takes it off the Market, and still when the 5 month mark comes to have My Doctors Office renew my script, I start worrying, even with a stash. I hate Benzo madness. :tickedoff:

[[Va...]]

No Valley I think we all have tales of woe when it comes to our scripts, but I solved that problem, I have a stock pile of Valium just in case the factories stop making them or the FDA takes it off the Market, and still when the 5 month mark comes to have My Doctors Office renew my script, I start worrying, even with a stash. I hate Benzo madness. :tickedoff:

Lol. Me too BG. I just need to start cutting again so I have leftovers when this happens again which it will with my doctor's office. Just feel bad for those who really need their meds today. Thank heavens for the long half life of V. I've missed a dose in the past by accident and it wasn't too bad. 

[[ly...]]

 

My latest RX came with 3 refills and it's for twice my dose.  So...I won't be seeing my pdoc for a very loooong time.

[[an...]]

Anne, thank you for your continued support and your wise words, and yes Free said it very well, Our Free is a real blessing and she is someone that will walk with you and hold your hand, while being in agony. I will have to say, it was very disconcerting, since we are all here no matter what stage of tapering to give support and yes even I need support at times and I know where to come to ask for it. Thanks again. Happy that your hold is working for you, I will restart my taper Aug 13th after a 2 month hold and have had tiny blips, but I can function and that is the way I choose to do my dance off of the benzo madness

 

Hi Begood!!

 

I want to thank you for your support as well.  Yes, I agree with you about Free.  She is always so supportive.  My hold is working very well.  I up dosed a bit over a month ago, but symptoms were unbearable at the time.  It is so much better now. I will probably restart my taper at about the same time as you, maybe more toward the end of August.  I have a feeling it will be much easier to taper down.  I will taper slowly though.  I was decreasing by about 7 to 10% every couple of weeks with holds in between. I plan on cutting about 5 to 7% each month.    I have no problem holding if things get bad again.  The funny thing is, I am not sure why I got hit back in May.  I had only cut about 4% in 6 weeks.  I think the cuts just caught up with me.  I will not let that happen again.  Like you, I will go as slow as I need to.  This last little bit will take me over a year, but that is okay.  I am happy that you are doing well.  Little blips here and there are okay.  It is the big ones that we want to avoid!!

 

Take care Begood!! 

[[an...]]

Love you Anne and everyone else here even though I don't post much. I intend to be a rock star after holding long enough like Valley but right now things are still rough and I don't want to be too negative. As y'all know, this ain't my first rodeo and even microtapering had me psychotic so I'm fine holding a while longer.

Blessings

Liza G

 

Hi Liza,

 

You keep on posting!!  It helps when you are feeling bad. You are not negative, just telling it like it is.  We are all here to support you just like you are here for us.  You will get there sooner than you think.  Just hold as long as you need to, and post away!!

 

Anne 

[[an...]]

Hi all. My daughter's tonsillectomy must have been successful. She was snap chatting the minute she woke up and ran off with her friend as soon as she got home lol.

 

I'm a little annoyed that I can't get my Valium scrip because the office computer system is down and "there's no way they can write a scrip without looking at the records on the computer". I guess tomorrow morning's dose will not happen lol. It's always something with these stupid benzos. I'll be so glad when I'm off and don't have to worry about this kind of issue any more. Am I the only one who seems to be jinxed when it comes to refills?  --V

 

Hi V,

 

I am glad to hear your daughter is doing well after having her tonsils out.  Kids recuperate so quickly!!  Certainly ice-cream and jello help.  I hope you get the prescription issue sorted out soon.  I have a nice stash of pills, but I still worry when it comes time to refill them.  Like you, I will be glad when I do not have to worry about it anymore. 

 

Enjoy your evening.

Anne 

[[az...]]

Joining...

 

Thanks,

a.

[[Va...]]

Hi all. My daughter's tonsillectomy must have been successful. She was snap chatting the minute she woke up and ran off with her friend as soon as she got home lol.

 

I'm a little annoyed that I can't get my Valium scrip because the office computer system is down and "there's no way they can write a scrip without looking at the records on the computer". I guess tomorrow morning's dose will not happen lol. It's always something with these stupid benzos. I'll be so glad when I'm off and don't have to worry about this kind of issue any more. Am I the only one who seems to be jinxed when it comes to refills?  --V

 

Hi V,

 

I am glad to hear your daughter is doing well after having her tonsils out.  Kids recuperate so quickly!!  Certainly ice-cream and jello help.  I hope you get the prescription issue sorted out soon.  I have a nice stash of pills, but I still worry when it comes time to refill them.  Like you, I will be glad when I do not have to worry about it anymore. 

 

Enjoy your evening.

Anne 

Thanks Anne!  --V

[[li...]]

Trying not to be, but I'm really scared and discouraged today. I'm hoping it's the weather (that I sm not out in) but I feel so physically sick and the mental stuff has gotten much worse the last few days--DP/DR, brain fog, confusion, frantic, blurry vision, adrenaline surges. I know it's windows and waves in a hold but it's discouraging to be at 5 months and wonder if all of this is just side effects--though it also feels like major withdrawal. I'm starting to think I'm not going to get back to those few days of stability I had last fall after I updosed from 1 mg of K to 1.25 mg. I was actually having a "light at the end of the tunnel" week last week. I wish I knew for sure that this hold was going to pay off--that's what is the worst--the not knowing if the battle is going to be over in a few months and I will reach stability. I can't seem to win no matter what I do. Microtapering made me worse than I am now but this is just such a merciless process.

Sorry. Can't cry to anyone here about it. Thanks for listening. Love you all

[[be...]]

Trying not to be, but I'm really scared and discouraged today. I'm hoping it's the weather (that I sm not out in) but I feel so physically sick and the mental stuff has gotten much worse the last few days--DP/DR, brain fog, confusion, frantic, blurry vision, adrenaline surges. I know it's windows and waves in a hold but it's discouraging to be at 5 months and wonder if all of this is just side effects--though it also feels like major withdrawal. I'm starting to think I'm not going to get back to those few days of stability I had last fall after I updosed from 1 mg of K to 1.25 mg. I was actually having a "light at the end of the tunnel" week last week. I wish I knew for sure that this hold was going to pay off--that's what is the worst--the not knowing if the battle is going to be over in a few months and I will reach stability. I can't seem to win no matter what I do. Microtapering made me worse than I am now but this is just such a merciless process.

Sorry. Can't cry to anyone here about it. Thanks for listening. Love you all

:'( :'( :'( :'( :'( :'( :'( :'( I am so sorry you are having to suffer so, maybe Valley can think of something that will help you. My Prayers are with you.

[[li...]]

Things ramped up over the weekend after several days of high humidity outside which is brutal for people in withdrawal. Just read if you don't have a dehumidifier in your home then the inside humidity can be the same even with the AC on. Anyone know if that's true.

[[Va...]]

Things ramped up over the weekend after several days of high humidity outside which is brutal for people in withdrawal. Just read if you don't have a dehumidifier in your home then the inside humidity can be the same even with the AC on. Anyone know if that's true.

That is true. Many portable ACs come with a dehumidifier.  --V

[[li...]]

Thanks V--hope that's the reason because the humidity is supposed to be lower in the next week--I hope to God that's the reason for the wave and I can get some hope back.

[[Va...]]

Trying not to be, but I'm really scared and discouraged today. I'm hoping it's the weather (that I sm not out in) but I feel so physically sick and the mental stuff has gotten much worse the last few days--DP/DR, brain fog, confusion, frantic, blurry vision, adrenaline surges. I know it's windows and waves in a hold but it's discouraging to be at 5 months and wonder if all of this is just side effects--though it also feels like major withdrawal. I'm starting to think I'm not going to get back to those few days of stability I had last fall after I updosed from 1 mg of K to 1.25 mg. I was actually having a "light at the end of the tunnel" week last week. I wish I knew for sure that this hold was going to pay off--that's what is the worst--the not knowing if the battle is going to be over in a few months and I will reach stability. I can't seem to win no matter what I do. Microtapering made me worse than I am now but this is just such a merciless process.

Sorry. Can't cry to anyone here about it. Thanks for listening. Love you all

If you had a good week last week, it is still promising. Hang on a little longer and see where you're at when you hit the 6 month mark. I still think the fact that you felt good when you up dosed last fall and felt stable means you will get there again.  I still think you'll get there!  --V

[[li...]]

Am I stupid not going back up to 1.25 mg?  I only got to 1.2 when I was tapering. I just thought the hold would do it and am terrified the updose will backfire because nothing seems to happen for me like it does for others--don't mean that to sound like a pity party

[[fr...]]

  Don't feel bad Liza, I'm having a bad time also.  Hoping it gets better for both of us.  There are no black or white answers.  Just time. 

[[Va...]]

Am I stupid not going back up to 1.25 mg?  I only got to 1.2 when I was tapering. I just thought the hold would do it and am terrified the updose will backfire because nothing seems to happen for me like it does for others--don't mean that to sound like a pity party

Not telling you to up dose but it worked before so it did work once.

 

You don't sound like a pity party, just someone in withdrawal. We're here to offer you support through the good, the bad and the ugly. Holding is helping IMO even if it doesn't feel like it sometimes.  --V

[[li...]]

Thanks Free and V--I want tO believe that it is working even when it doesn't feel like it. So hoping I can get to six months in five more weeks and feel closer to stabilizing without needing to updose. Thanks for listening. So many different perspectives. I appreciate them all.

[[la...]]

Hi all,

1st I want to say that barometric pressure and humidity definitely effects me negatively.

 

I had hubby take me to ER on Saturday morning...my neck and the brain fog was so bad I had myself convinced I had a brain infection.

 

After MRI and blood work heart monitor etc...my blood work came back great (from ER) but MRI showed degenerative Disc disease and "significant" herniated discs in neck along with "sinus disease" whatever that means (sinusitis still?)

 

So Dr there said nothing was "emergent" (yeah right, come take a a second inside my head)  to follow up with ENT surgeon in 2 weeks and also make apt with neuro surgeon for neck.

 

guess lymph nodes are not even a problem!!! 

 

this Saturday is 5 weeks and I am NO better at all....I do not know what to do. I thought well I may as well start to taper on Saturday because holding has not given me any relief.

 

then I get scared to taper while I am waiting to see these specialists.

 

my head is so fogged and whacked I have a hard time driving or doing anything now.

Have not been to prayer meeting on Wed nights for 4 weeks now. Going to church is a challenge.

 

went to stores today but honestly I have no idea how I did it...was in and out of each place so fast  because my head feels like I am going to pass out!!!

 

I know none of you have any answers...I just feel like along with Liz and Free, we are not going to experience what you have Valley.  Makes me so scared and sad

 

Back to the question about the weather....I have read and was told by neurologist that Vestibular migraines will absolutely be effected by the weather changes.

 

its been blasting hot...then raining....then hot..when the barometric is above 30 is when I feel my best which still is complete CRAPOLA..but better then how its been lately because its been below 30 for over a week now

[[He...]]

I was at the end of a two month hold. So I started a micro taper.

Ok so I am in day 4 of what I expected to be 5 days of a micro cut of .01 each day.

I am now at 1.21, down from 1.25.

Last night I was light headed, but the parathesia that had left did not return.

Today I am not dizzy or light headed but parathesia is back, but not terrible at all. I'm just sad because I thought it was gone for good...lol.  Still getting Windows.

 

I am not sure if these are or are not normal withdrawal sfx that I should expect since I am cutting.

Or is this a sign that I need to stop cutting?

Maybe my two month hold was not long enough?

I had intended to stop after five days any way and hold for three weeks to see what happens.

 

soooo.... help and advice buddies....

 

Do I go for that last .01 mg cut to round out my dose to 1.20 ?

Is it too soon to tell, and should I go for that last .01 mg cut tonight?

 

Does it make sense to stop the cutting now, and wait to see what happens before I cut that last .01?and just consider myself lucky, if I was able to get at least this far?

It's just that that last .01 is such an infinitesimal amount that it seems that it wouldn't hurt?

Sometimes I think my questions are stupid. As I write my posts I almost can answer my own questions. I want to get off this stuff so badly that many times I make the wrong decisions.

 

Your input is so valuable to me.  Sorry for posting so much I told myself I wouldn't do that. But here I am again.

 

I am going to the psych dr today. I know he's gong to push me to taper fast. But I know that will put me in hell.  Please help me to be strong!

 

 

[[He...]]

Hi all,

1st I want to say that barometric pressure and humidity definitely effects me negatively.

 

I had hubby take me to ER on Saturday morning...my neck and the brain fog was so bad I had myself convinced I had a brain infection.

 

After MRI and blood work heart monitor etc...my blood work came back great (from ER) but MRI showed degenerative Disc disease and "significant" herniated discs in neck along with "sinus disease" whatever that means (sinusitis still?)

 

So Dr there said nothing was "emergent" (yeah right, come take a a second inside my head)  to follow up with ENT surgeon in 2 weeks and also make apt with neuro surgeon for neck.

 

guess lymph nodes are not even a problem!!! 

 

this Saturday is 5 weeks and I am NO better at all....I do not know what to do. I thought well I may as well start to taper on Saturday because holding has not given me any relief.

 

then I get scared to taper while I am waiting to see these specialists.

 

my head is so fogged and whacked I have a hard time driving or doing anything now.

Have not been to prayer meeting on Wed nights for 4 weeks now. Going to church is a challenge.

 

went to stores today but honestly I have no idea how I did it...was in and out of each place so fast  because my head feels like I am going to pass out!!!

 

I know none of you have any answers...I just feel like along with Liz and Free, we are not going to experience what you have Valley.  Makes me so scared and sad

 

Back to the question about the weather....I have read and was told by neurologist that Vestibular migraines will absolutely be effected by the weather changes.

 

its been blasting hot...then raining....then hot..when the barometric is above 30 is when I feel my best which still is complete CRAPOLA..but better then how its been lately because its been below 30 for over a week now

 

Hi Lainey,

I have  degenerative disc disease too. My neck gets stiff and hurts a lot sometimes. But I do find that since I've been in my taper, my neck pain has gotten a lot worse. If I read a book, it hurts. If I stay in one position too long, it hurts.

I've been to many surgeons and gotten many dif opinions as far as having surgery or not.

Please don't be afraid to see at least three surgeons and get different opinions. Be sure to ask WHY they have their opinions.  It's best to get all the info you need so you will know just how serious or not serious it is.

Many people have degenerative disc disease. The older people get, the more common it is.

Your neck pain could be caused by benzo withdrawal. Just because you have gotten an MRI or whatever test you had, just recently, doesn't mean it wasn't there for years and not causing you any problem until you started to taper.

I know that my neck pain goes away when I am active and moving around. I also have discovered that putting pressure on the "knots" on either side of my neck , just below my head helps a lot. A Chiropractor showed me that. He said my muscles were very tight and that adds to neck and head pain. Heat around your neck and shouldershelps too. Sometimes it's the muscles that get weak that are causing the pain.

So I am not telling you to ignore any medical advice. Please do follow up. Get yourself informed. But don't be afraid of what MIGHT BE.  Because it MIGHT NOT BE.

Good luck

Heathcliff