The Long Hold Support Group

[[Ce...]]

Oh boy did I have and still am having a horrible day and night ! Neck and back ache, neck most of all. Shakes and trembles, no windows.

I just don't understand. I am still holding, but the past few days have been worse than any other day in my entire taper.things are getting worse, not better. One day I am better and the next three are awful. Seriously think there is something seriously wrong. Feel like I am dying.

 

Feel like I am not going to win this battle. Never felt discouraged like I do now! Sooooo miserable.

 

Heath :-[  :-[ :-\

 

Hi Heath,

 

Please don't be discouraged. You are having good days. It's not like they're all bad. You will win this battle! You're on the right path, you just have to keep moving and not let the bad days disqualify the good ones. Live for the good days knowing that sooner or later the good ones will outweigh the bad ones. That is just the way this works. Are you reading success stories? They're really encouraging and insightful. Give it a try? You're not dying... your healing!  ~CeCe 

[[be...]]

Hello All, I am hoping that things are going well for everyone and that each one of you have found a way to get through this maze of benzo Recovery, I know that many are struggling and I am sending you silent hugs and Prayers and support. And I know that many of us are doing well and just coasting along, some with sx and some with blips like me. I do not post much, but I read everyday and my thoughts are always with everyone here and I think of Our Leader Valley, who is going through his own taper and still here for all of us, V thank you for being steadfast and supporting us all, please know that if you need extra support we are here for you also. Don't ever forget that. I am doing well with my restart of my taper, and actually feel better since I started to taper again, and so far the only thing I have felt is a very mild chest pressure, but had this really bad in Fall, and it went away. I have 7 more days of taper and then I will hold again, but I am again fighting with should I do two months or one month, I will decide later. Only best regards to all and hope that the windows open for you. The Turtle.  :smitten:

[[Be...]]

I am with you. 2 and 1/2 weeks into my hold and morning anxiety has come back after a brief (relative) respite. I keep trying to tell myself that when I have had really bad weeks, I have needed at least 4 weeks to even begin to get stable. And, saying that, I really should have held more than 4 weeks on the last cut (but here I am). 

[[ne...]]

Hi all,

 

Just wanted to give a big, hearty salutation to all my fellow taper holders. I went down 50% in 3 months and my brain's been having a rough time, so I'm holding at .75 clonazepam until hopefully a bit of the derealization and anxiety ease up. On August 26th it'll be 2 months. I'm happy to find this thread because I thought I was a unique case holding for so long! My pdoc says the complete taper will take 6 months - 1 year with my withdrawal reaction, though I don't want to go through all this for another year. But what must be done, must be done. The pdoc also wants to switch me from Lexapro to Zoloft.. but at this point I've determined fewer meds, not more, in my brain will be the way to liberation.

[[ly...]]

 

During my 4 month hold that ended in late June, I had a major setback at week 5.  A new wd sxs came on and caused me some serious doubt as to my hold.  Why would something come out of the blue after 5 wks?  Well, I guess this is just how it goes with this process.  Waxing and waning as the brain rights itself.  Other sxs had greatly diminished or gone away.  I went back to my plog to refresh my memory and see the many, many sxs I was having at the time my hold started.  I "held tight" (no pun) and got better and better and when I restarted my taper I had pretty minimal wd sxs.  I've since made 2 cuts (10% and 12%) with only very manageable sxs.  Not that there was "no" wd, but most was more annoying than anything else.  I'll take annoying.

 

I started a thread about Hair Loss and ran across some others that have taken their own road and done a very personalized taper - throwing the "rules" out the window.  I am more and more convinced that I have found my path through this.  It doesn't have to be a nightmare.  I don't have a schedule or a calendar and no longer pressure myself to get off.  I'm giving my brain all the time it needs.

[[be...]]

This is a perfect quote Lynn, [glow=red,2,300]"I'm giving my brain all the time it needs".[/glow]Very Wise Words Indeed.

[[Va...]]

Oh boy did I have and still am having a horrible day and night ! Neck and back ache, neck most of all. Shakes and trembles, no windows.

I just don't understand. I am still holding, but the past few days have been worse than any other day in my entire taper.things are getting worse, not better. One day I am better and the next three are awful. Seriously think there is something seriously wrong. Feel like I am dying.

 

Feel like I am not going to win this battle. Never felt discouraged like I do now! Sooooo miserable.

 

Heath :-[  :-[ :-\

I'm so sorry Heathcliff. This is the pattern of stabilization that plays out. The really good news is that you are having more good days than bad meaning more windows than waves. The good days should start to get consistently longer until very minimal sxs are felt every day. You're doing well! Hang on.  --V

[[Va...]]

Hi all,

 

Just wanted to give a big, hearty salutation to all my fellow taper holders. I went down 50% in 3 months and my brain's been having a rough time, so I'm holding at .75 clonazepam until hopefully a bit of the derealization and anxiety ease up. On August 26th it'll be 2 months. I'm happy to find this thread because I thought I was a unique case holding for so long! My pdoc says the complete taper will take 6 months - 1 year with my withdrawal reaction, though I don't want to go through all this for another year. But what must be done, must be done. The pdoc also wants to switch me from Lexapro to Zoloft.. but at this point I've determined fewer meds, not more, in my brain will be the way to liberation.

[[Va...]]

Hello All, I am hoping that things are going well for everyone and that each one of you have found a way to get through this maze of benzo Recovery, I know that many are struggling and I am sending you silent hugs and Prayers and support. And I know that many of us are doing well and just coasting along, some with sx and some with blips like me. I do not post much, but I read everyday and my thoughts are always with everyone here and I think of Our Leader Valley, who is going through his own taper and still here for all of us, V thank you for being steadfast and supporting us all, please know that if you need extra support we are here for you also. Don't ever forget that. I am doing well with my restart of my taper, and actually feel better since I started to taper again, and so far the only thing I have felt is a very mild chest pressure, but had this really bad in Fall, and it went away. I have 7 more days of taper and then I will hold again, but I am again fighting with should I do two months or one month, I will decide later. Only best regards to all and hope that the windows open for you. The Turtle.  :smitten:

Thanks BG and everyone here! --V

[[ga...]]

Hello All, I am hoping that things are going well for everyone and that each one of you have found a way to get through this maze of benzo Recovery, I know that many are struggling and I am sending you silent hugs and Prayers and support. And I know that many of us are doing well and just coasting along, some with sx and some with blips like me. I do not post much, but I read everyday and my thoughts are always with everyone here and I think of Our Leader Valley, who is going through his own taper and still here for all of us, V thank you for being steadfast and supporting us all, please know that if you need extra support we are here for you also. Don't ever forget that. I am doing well with my restart of my taper, and actually feel better since I started to taper again, and so far the only thing I have felt is a very mild chest pressure, but had this really bad in Fall, and it went away. I have 7 more days of taper and then I will hold again, but I am again fighting with should I do two months or one month, I will decide later. Only best regards to all and hope that the windows open for you. The Turtle.  :smitten:

 

Hi Turtle! I am in chicken mode right now riding out a bad wave. Seeing some windows as of last night.

 

Gard

[[ly...]]

 

 

Hi Gard!  Great to see you!

[[Va...]]

 

 

Hi Gard!  Great to see you!

I second that lynn! --V

[[be...]]

Hello All, I am hoping that things are going well for everyone and that each one of you have found a way to get through this maze of benzo Recovery, I know that many are struggling and I am sending you silent hugs and Prayers and support. And I know that many of us are doing well and just coasting along, some with sx and some with blips like me. I do not post much, but I read everyday and my thoughts are always with everyone here and I think of Our Leader Valley, who is going through his own taper and still here for all of us, V thank you for being steadfast and supporting us all, please know that if you need extra support we are here for you also. Don't ever forget that. I am doing well with my restart of my taper, and actually feel better since I started to taper again, and so far the only thing I have felt is a very mild chest pressure, but had this really bad in Fall, and it went away. I have 7 more days of taper and then I will hold again, but I am again fighting with should I do two months or one month, I will decide later. Only best regards to all and hope that the windows open for you. The Turtle.  :smitten:

 

Hi Turtle! I am in chicken mode right now riding out a bad wave. Seeing some windows as of last night.

 

Gard

[glow=red,2,300]Hang in there "CHICKEN"[/glow] you will be seeing more improvement as you go along. "TURTLE HUGS."

[[He...]]

Thanks Cece and. V. I will try to be positive.

I hope you all don't think I am a flake. One day I post that things are good. Am I fooling myself? Is it my benzo brain that is saying ,oh you are beginning to feel better?

And then the very next day, I am in the dumps again.

 

I'm trying to analyze myself.

I think what is happening is that I think I am better because the shakes and trembles are a lot less, SOMETIMES. And then for about two weeks I had Windows. But then I get new and worse wd even though the shakes are getting better. So am I really better?

 

I used to say, if only these shakes would go away. But then I get new worse wd. So I think overall I really am not doing so well. But then I remember it's the non linear withdrawal that is making me crazy!

 

My Windows have just about DISAPPEARED as of yesterday.

I regret not holding longer than that two month hold before cutting .05 again. I think that is maybe why my windows disappeared.  But I can't do anything about it now.

 

I am presently holding for one month at 1.2 holding holding holding. Will continue to hold for as long as it takes. No calendar!

Perhaps if my husband would understand that this takes time, I'd be in a better place. He still thinks I should rush it ahead or go to detox. He used to be very supportive, but lately he's run out of patience.its been almost 7 months.

When I told him that some people take more than1 year to 18 months, he flipped his lid.

 

I will go and read some success stories now as Cece suggested, and hope that my neck and back pain go away soon. I'll trade the shakes for neck and back pain in a heart beat!

Maybe not. I should be great full the shakes are almost gone at times.

 

Heath

[[Ce...]]

Hi again Heath,

 

 

I don't think of you as a flake. I think of you as a fellow BB who is suffering through a really nasty ordeal and is fighting hard against this extremely hard to handle drug, and is in the fight of her life!

 

Just so you know, I actually had the idea that I might be bipolar or something, because of all the ups and downs during this whole poopy process. It's got me coming and going. Yesterday was great, today sux. I didn't sleep last night, so you know how that goes....

 

Tell your husband to hang in there, if you could make it happen faster, by all means you would! You hang in there too, sweetie. You're doing the best you possibly can.  ~CeCe   

[[He...]]

Cece you are so sweet and kind. I'm hanging on.

I decided to talk about this much less with my husband. It doesn't help and it makes me feel guilty for putting him through this along with me.  I guess I can't blame him. This is ruining our happiness.

Heath :smitten:

 

[[ly...]]

 

 

Heath, the windows will be back and open wider and wider.  Hang tight!  I rarely mention any of this to my husband.  He'll never understand and he will worry.  I'm sick to death of it myself!  Good thing we all have eachother to talk to!

[[Va...]]

Thanks Cece and. V. I will try to be positive.

I hope you all don't think I am a flake. One day I post that things are good. Am I fooling myself? Is it my benzo brain that is saying ,oh you are beginning to feel better?

And then the very next day, I am in the dumps again.

 

I'm trying to analyze myself.

I think what is happening is that I think I am better because the shakes and trembles are a lot less, SOMETIMES. And then for about two weeks I had Windows. But then I get new and worse wd even though the shakes are getting better. So am I really better?

 

I used to say, if only these shakes would go away. But then I get new worse wd. So I think overall I really am not doing so well. But then I remember it's the non linear withdrawal that is making me crazy!

 

My Windows have just about DISAPPEARED as of yesterday.

I regret not holding longer than that two month hold before cutting .05 again. I think that is maybe why my windows disappeared.  But I can't do anything about it now.

 

I am presently holding for one month at 1.2 holding holding holding. Will continue to hold for as long as it takes. No calendar!

Perhaps if my husband would understand that this takes time, I'd be in a better place. He still thinks I should rush it ahead or go to detox. He used to be very supportive, but lately he's run out of patience.its been almost 7 months.

When I told him that some people take more than1 year to 18 months, he flipped his lid.

 

I will go and read some success stories now as Cece suggested, and hope that my neck and back pain go away soon. I'll trade the shakes for neck and back pain in a heart beat!

Maybe not. I should be great full the shakes are almost gone at times.

 

Heath

Just tell yourself you've done amazingly well in 7 months!  Look how far you've come. The good days will come and you will start feeling yourself again. It just takes time and now you know how to listen to your body so it should be a smooth ride when you start again. I quit talking withdrawal with any and all as nobody understands unless they've been through it. You will get past this rough patch. I know you will!  --V

[[Be...]]

Not sure, there might be a rule against double posting, but I am in bad situation, so desperation took over. I'm so distraught. I was doing oh so well on this valium taper until about 2 months ago. Now I am a trembling mess of a person trying to work and support my kids. I took them to school today and I could barely stand being in the school. My cortisol morning anxiety on top of this newly acquired social phobia is tearing me apart. I am seriously considering going back on benzos because it might at least buy me some more time with my kids, maybe until retirement and then I can figure out things a bit better. I think I may have cut too much on top of a relatively hard cut period and really screwed myself. If I could just foresee holding at this level for some more weeks and a break in my symptoms coming, I think I could manage. I've had a constant headache/head pressure for two months and burning in my stomach (though that seems to be letting up some). Any help is appreciated. 

[[Va...]]

Not sure, there might be a rule against double posting, but I am in bad situation, so desperation took over. I'm so distraught. I was doing oh so well on this valium taper until about 2 months ago. Now I am a trembling mess of a person trying to work and support my kids. I took them to school today and I could barely stand being in the school. My cortisol morning anxiety on top of this newly acquired social phobia is tearing me apart. I am seriously considering going back on benzos because it might at least buy me some more time with my kids, maybe until retirement and then I can figure out things a bit better. I think I may have cut too much on top of a relatively hard cut period and really screwed myself. If I could just foresee holding at this level for some more weeks and a break in my symptoms coming, I think I could manage. I've had a constant headache/head pressure for two months and burning in my stomach (though that seems to be letting up some). Any help is appreciated. 

Hi Benzo3  it really sounds like withdrawal lag time hit you hard. I believe if you hold long enough you will feel much better. It took me 6 months. If you want to try to do it faster, you could try an updose and then hold there until you feel better. Just remember an updose is a personal choice and may cause an uptick in sxs for a few days before you feel better and doesn't work for everyone. Holding your dose and going through the ups and downs of stabilization will get you where you want to be IMO. You are doing great! It will be worth it to get off the drug now so you can really enjoy life. Hope e you feel better soon!  --V

[[Be...]]

Valley Um. Thank you for your support. Perhaps the weekend will bring relief.

[[He...]]

Benzo3,

I just read your post.

The following is only from my experience, and everyone is different, so take what you will from it. I hope it helps you in some way. I have gotten a lot of help on this support group.

I too had easy sailing at first to get off of Valium. I went from 7.5 mg to 1.5 mg with withdrawal effects that were manageable, although very uncomfortable, mostly trembles and muscle pain.

But once I hit 1.5 all that relatively smooth sailing caught up with me. All hell broke loose!

Started having really bad trembles, dizzy , headaches jelly legs, muscle pain, some blurry vision

 

With the guidance, support and the opinions of the buddies here on this support group, I realized what was happening.

 

All the smooth sailing I had had before had caught up with me. I had tapered much to fast and made cuts that were much too big. I hadn't  given my CNS brain time to heal and catch up with those cuts. Now these wfx were a sign to me that my CNS was asking for more time to heal!

So I held my dose for two months. It wasn't until about the six week point that I started to feel better. I began to get Windows. My withdrawal effects diminished, although they did not disappear. I prob would have seen even more improvement in my wfx if I had held longer! ( dumb me, gotta stop being in a hurry, not worth it!)

 

Now when I make a cut it is only when my body tells me it's time. No calendar, no schedule. Just listening to how my body feels. And my cuts are very tiny...  .05 is all I can handle right now. That may seem very tiny but the lower your dose, the smaller the cuts have to be in general. And if I have to hold for 2 months or longer, I will.

I prob should have waited more than 2 months on my last hold because I am getting pretty bad wfx with this last cut.

I should have waited longer because I cut .05 after the two month hold and got pretty bad wfx again.

I am now at 1.2mg.  Going very slowly and hoping my windows return and my new  wfx go away or diminish again, but I WILL wait and hold and not rush ahead.

 

Sorry to be so long winded but I just want you to know, IMO, what you are going through is typical of benzo withdrawal. It's very difficult, but you can do it. But holding and making small cuts does make the journey more  tolerable bec the wfx are less.

 

I have been extremely confused and discouraged many times. It seems like it is never ending. It is destroying my life. BUT...I know there is an end to it and my life is worth fighting for.

And if I go slowly enough, hopefully the wfx will not be so bad. I learned my lesson the hard way, by tapering too fast!

So, IMO, I agree with the other buddies' posts. Try to hang in there! I know how hard it is. But you can do it. IMO, do you think smaller cuts, longer holds,  and listening to how your body feels will help you? Maybe, hopefully it will help you to have an easier time with your taper. 

 

Please don't give up!    There is an end to this!  Dig in, You are worth the fight. And tomorrow you may have a much better day. Remember, benzo withdrawal is not linear.

It's a crazy, painful, up and down, and scary roller coaster. It's not an enjoyable ride, so dig in and hold on.

Windows will appear.  Please please don't give up! This support group is here for you. Just like they are here for me.

 

I too will have many more days just like you are having now. I know I'm not nearly out of the woods. Today, so far I'm doing ok, but who knows what tomorrow will be like?  So dont be surprised if you see me posting in a different mood someday soon. We all have our bad times. We all need support.

We are all here for each other!

 

Heathcliff

[[Be...]]

Thank you, Heath.

 

After talking with my psychiatrist, I have decided to upside to 10 mg of Valium. I am going to introduce citalopram. I took it at one time and, looking back, it might have helped. I was also on high levels of benzodiazepines at that time though. I know the jury is split on anti-depressants. If I can stabilize, I will carry forward my taper, but much slower. Thank you again for your compassion.

[[ly...]]

 

 

Good luck with the updose Benzo.  Be sure to let us know how it goes.  You can taper at a pace that lets you live your life and have manageable or even minimal sxs.  I am doing what Heath, V and many others are doing - going slow and holding when things are ramping up.  I have been fully functional after my long hold and am able to handle 10% cuts every 30 days at this point.  I will hold longer if things go sideways.

 

Best of luck!

[[Be...]]

Thanks so much. Fingers crossed.