The Long Hold Support Group

[[ly...]]

 

 

Thanks for the run-down CR.  I didn't have too much trouble from .3 to now (about .15).  I guess we'll just have to take it as it comes.   

[[Ch...]]

No problem! I wonder why some of us tend to feel worse the lower we go. We'll just have to push through. Xanax sure is a nasty drug.

[[ga...]]

No problem! I wonder why some of us tend to feel worse the lower we go. We'll just have to push through. Xanax sure is a nasty drug.

 

Amen to that!

[[be...]]

I was told that the lower we go the percentage of the cut is actually larger and that may be why some problems occur. . Where is "VALLEY" he will know if this is correct.

[[Va...]]

I was told that the lower we go the percentage of the cut is actually larger and that may be why some problems occur. . Where is "VALLEY" he will know if this is correct.

That is correct, however the conventional wisdom is that the lower you get, the better you should feel if you're tapering at the correct rate. I've seen builder, SG and others post this  I'm finding that I feel better the lower I get but I had to decrease the cut rate. I don't know of it will hold true as I get to the very low levels but we can all hope that's how it goes.  --V

[[be...]]

I was told that the lower we go the percentage of the cut is actually larger and that may be why some problems occur. . Where is "VALLEY" he will know if this is correct.

That is correct, however the conventional wisdom is that the lower you get, the better you should feel if you're tapering at the correct rate. I've seen builder, SG and others post this  I'm finding that I feel better the lower I get but I had to decrease the cut rate. I don't know of it will hold true as I get to the very low levels but we can all hope that's how it goes.  --V

Ask and I shall receive Valley appears. . Yes it is true I am feeling more like normal, just a bit, as it has been a long time, but the glimpses I get are totally awesome, it is called Hope for the Future.

[[an...]]

Hi Begood and Valley,

 

I mentioned that my first taper was successful.  I never cut more than 10% in a two week period.  This was even more important the lower I got in dosage.  Once I got to lower dosages, I was decreasing by drops.  My taper was smooth sailing all the way down.  But, when I was at about 0.08 mg/day, I experienced an uptick in symptoms.  This went on for a few days and they were just getting worse.  It turned out that I made a mistake in the calculation of  my dose for that particular week.  I should have been cutting about 3% each week, but I then realized that I was actually cutting closer to 10%.  Once I corrected my mistake, all symptoms disappeared and I was able to get down to almost nothing with no problems whatsoever.

 

I do believe a symptom based taper is the way to go.  But, I believe the cut no more than 5-10% a week rule is the way to go.  It is a good guideline to follow until you get low enough to where you can jump.  Some people can cut more than 5 - 10% over a two week period and others cannot.  It depends.  In my case, I will need to slow my taper down even more--probably cutting no more than 6% a month.

 

I hope everyone is doing well.

 

Anne 

[[be...]]

Hi Begood and Valley,

 

I mentioned that my first taper was successful.  I never cut more than 10% in a two week period.  This was even more important the lower I got in dosage.  Once I got to lower dosages, I was decreasing by drops.  My taper was smooth sailing all the way down.  But, when I was at about 0.08 mg/day, I experienced an uptick in symptoms.  This went on for a few days and they were just getting worse.  It turned out that I made a mistake in the calculation of  my dose for that particular week.  I should have been cutting about 3% each week, but I then realized that I was actually cutting closer to 10%.  Once I corrected my mistake, all symptoms disappeared and I was able to get down to almost nothing with no problems whatsoever.

 

I do believe a symptom based taper is the way to go.  But, I believe the cut no more than 5-10% a week rule is the way to go.  It is a good guideline to follow until you get low enough to where you can jump.  Some people can cut more than 5 - 10% over a two week period and others cannot.  It depends.  In my case, I will need to slow my taper down even more--probably cutting no more than 6% a month.

 

I hope everyone is doing well.

 

Anne 

Thanks Anne I was asking because a buddie here was wondering about the lower doses and why they are having problems, when I taper I do 6% or a bit more, in a 10 day or so time, and then I hold now for a month, it is just the way it works for me, I did do a 11% at first of month, just wanted to try, but I felt ok, but knew I could not keep going as I feel I will jinx myself if I change something that is working so well. Hang in there we will get there, just do not know when, all I know I want to "Walk Off" and have them put allergic to Benzo's on my Medical Chart.

[[an...]]

Hi Begood,

 

I am glad you are doing well.  I know at this rate, it will take me a long time to finish with this, but like you, I want to walk off.  I am also tempted to cut at 11% a month, but I get too symptomatic.  Funny thing is, during my first taper I cut 10% every two weeks all the way down.  I suppose the second time around is different.

 

Begood, if what you are doing is working, there is no reason to rush it.  I do believe that. We will be off this stuff soon (well one of these days) haha. 

 

Enjoy your evening!!

 

Anne 

[[Sh...]]

No problem! I wonder why some of us tend to feel worse the lower we go. We'll just have to push through. Xanax sure is a nasty drug.

 

I think for some it's like once we hit a certain point, the dose is too small to be therapeutic for our body so it's basically like we've jumped off the stuff already. Unless the dose you're taking is still a reasonable amount then I'm not sure....? All my cuts from 10mg down to 3mg weren't too bad and I was fine after 2-3 weeks. But after that it's been crazy hard.

[[He...]]

Hello everyone,

I am feeling really good. Better and better each day for a while now. A few little blips sometimes but nothing to speak of.  I have even felt quite normal on many days. This long hold has really done wonders for me.i think I am stable.

(except for my neck, but I'm leaving that out of the picture because I am not sure what the heck is going on with my neck for three months now, and refuse to let it get in the way of my taper)

 

I will reach my 4 month mark on November 26.

I am planning on a .02 cut in my dose, just once and then hold there for another 5 weeks to see what happens.

A .02 cut will bring me from 1.20 to 1.18.  That's a cut of less than 2%. 1.66% to be exact.

Way less than 5%. I'm hoping I won't feel it at all. But it is going to be like a test.

 

If all goes well I will start a .003 micro taper after Jan 1 of the New Year. The holidays will be over and I will have let my CNS have a vacation!

 

So the count down has begun. I feel like doing it now, but I am going to wait until after Thanksgiving.

 

I HOPE THIS WORKS!

 

HEATH :yippee:

[[He...]]

I love this little guy..... 

Glad I can use him.

 

Ihope everyone who is struggling will have a hold that will help them as much as mine has helped me.

 

Feel better everyone and don't ever think your good days will never come. THEY WILL. JUST DONT GIVE UP. You can do this. If I can get this far, anyone can, because I am the biggest wimp out there! Just go back to May or June and read my posts. I was a mess and in horrible despair back then. But with all the buddy encouragement I got here, I was able to hang on. I'm not out if the woods yet, but I am full if hope and do believe I will make it to the end and walk off this taper in good shape. It might take a year, but I'm in no hurry. It will happen when it  happens!

I have lots to be thankful for this USA Thanksgiving holiday.

 

All the best for better and better days, peace and healing, to all of you.

 

Heath

[[be...]]

Heath great news for you. [glow=red,2,300]"HOPE IS WONDERFUL"[/glow]  

[[so...]]

So glad you're feeling good, Heath!

[[so...]]

Hi again Heath,

 

A couple of questions if you don't mind. Were you having trouble with insomnia, and has that gotten better during your hold?

 

And are you taking any other meds, like Remeron, or any supplements?  Or are you on just the Valium?

 

Did you have cog fog, that heavy-headed, can't think feeling? And crappy toxic mornings? If so, have they gotten better?

 

Looking for encouragement. I'm still feeling weird, but only at Day 33, so not far into the long hold yet 

 

~SS

[[ga...]]

Great news, Heath. So happy for you!

 

Gard

[[Va...]]

No problem! I wonder why some of us tend to feel worse the lower we go. We'll just have to push through. Xanax sure is a nasty drug.

 

I think for some it's like once we hit a certain point, the dose is too small to be therapeutic for our body so it's basically like we've jumped off the stuff already. Unless the dose you're taking is still a reasonable amount then I'm not sure....? All my cuts from 10mg down to 3mg weren't too bad and I was fine after 2-3 weeks. But after that it's been crazy hard.

Hi Shamo. Hope you start feeling better real soon! I hope the 6 month mark is the key.  --V

[[Va...]]

So happy for you Heath! That's how is done. 

[[ly...]]

 

 

Just wonderful news Heath!  So happy for you! :smitten:

[[ba...]]

Hi again Heath,

 

A couple of questions if you don't mind. Were you having trouble with insomnia, and has that gotten better during your hold?

 

And are you taking any other meds, like Remeron, or any supplements?  Or are you on just the Valium?

 

Did you have cog fog, that heavy-headed, can't think feeling? And crappy toxic mornings? If so, have they gotten better?

 

Looking for encouragement. I'm still feeling weird, but only at Day 33, so not far into the long hold yet 

 

~SS

 

Heath, same questions. I am also doing a long hold like you, have had decent periods, but still, it's rough. I still have a lot of bad periods that last more than half the day, and some days that are just shot. Due to the holiday stress, plus  getting my physical, my mammogram, and a colonoscopy next week (ugh), and the fact that i never have gotten stable, I am planning to hold until things improve.

 

The only time I really get ok is when I can ride my bike for a few hours. The temps are getting too low, although I rode the last 2 days anyway. This whole week is going to be quite chilly. I live in a ski town in Colorado, and Winter is slow and late.

 

I also reduced my seroquel 3 weeks ago, not so foggy, but I am sure I am getting some withdraw from that.Was simply sick of the side effects of it.

 

I am just over 2 months into this hold, it is the longest I have done, will stay here until my body adapts, It has not yet.

I am not in never ending agony, but I am no ok either.

 

Very happy you finally found some stability. You and I have both been suffering, so I am following your lead on this, as we seem to have similar physiology.

 

http://i1088.photobucket.com/albums/i333/baddove9/issues/13122964_923884761057046_1972202744488514714_o.jpg

 

[[an...]]

Hi Heath!!

 

Great news.  I am so happy to hear you are doing better.  The long hold is working very well for you.

 

Enjoy the day!

Anne 

[[He...]]

Hi again Heath,

 

A couple of questions if you don't mind. Were you having trouble with insomnia, and has that gotten better during your hold?

 

And are you taking any other meds, like Remeron, or any supplements?  Or are you on just the Valium?

 

Did you have cog fog, that heavy-headed, can't think feeling? And crappy toxic mornings? If so, have they gotten better?

 

Looking for encouragement. I'm still feeling weird, but only at Day 33, so not far into the long hold yet 

 

~SS

 

Heath, same questions. I am also doing a long hold like you, have had decent periods, but still, it's rough. I still have a lot of bad periods that last more than half the day, and some days that are just shot. Due to the holiday stress, plus  getting my physical, my mammogram, and a colonoscopy next week (ugh), and the fact that i never have gotten stable, I am planning to hold until things improve.

 

The only time I really get ok is when I can ride my bike for a few hours. The temps are getting too low, although I rode the last 2 days anyway. This whole week is going to be quite chilly. I live in a ski town in Colorado, and Winter is slow and late.

 

I also reduced my seroquel 3 weeks ago, not so foggy, but I am sure I am getting some withdraw from that.Was simply sick of the side effects of it.

 

I am just over 2 months into this hold, it is the longest I have done, will stay here until my body adapts, It has not yet.

I am not in never ending agony, but I am no ok either.

 

Very happy you finally found some stability. You and I have both been suffering, so I am following your lead on this, as we seem to have similar physiology.

 

Hi Solitudeseeker and Bad Dove, and anyone else,

 

I hope you both are doing better today.

To answer your questions,  First let me say that although I am getting towards the end of 4 month hold, I did not start to get relief from bad wd sxs for the first 6 weeks. And even then after the first 6 weeks, it was a roller coaster of getting better a little at a time. I started getting windows here and there,but only in the evenings, for about two hours on some days. But may days were still pretty bad and I rarely did anything but lay around the house and have pity parties for myself. Pretty bad!

 

After that, the windows got longer. Then they disappeared and they started to come in the mornings. Things constantly changed and I never knew how I would feel the following day until the that day came and I was able to see how I was feeling when I woke up. And even when I woke up feeling good, I still often went south at about 3 or 4 o'clock.

 

After. 2 months, where I used to feel bad but with Windows, I was now feeling mostly good but with waves! Then I started to have longer periods of feeling good but always had  awful waves in the late afternoons consistently. And each wave of wd sxs was different each time. For about 8 weeks I was still getting wd sxs that I had never had before. (anxiety, intrusive thoughts, dizziness, jelly legs) Talk about craziness! 

Then one day, I'm not exactly sure, but it was after 2 months for sure, i realized  that I was having fewer and fewer side effects. My really BIG AHA MOMENT  was when realized that my inner shakes and trembles, (that were with me from the day I realized I was in tolerance, even before I started my taper, back in January) WERE ACTUALLY GONE! They had never been gone for a good 10 months! I could hardly believe it!

From there on it was just better and better with little set backs here and there. It was no walk in the park, but it was at that point that I think I was on my way towards starting stabilization. But I did not know it at the time. But looking back, I think that was the real beginning of some kind of major healing in my CNS. Of course, this is just conjecture.

 

Now I had held before, back in April, May sometime for 2 months. I thought I was ready to cut again back then.  WRONG!  I know now that I had improved a lot but I WAS NOT STABLE and I never should have cut back then.  That is why, this time at two months, although I was sure I was on my way to getting much better, I chose to be smart, wait until I am really stable, not just better, and not jump ahead to fast and mess things up! That's why I am holding until a good 4 months.

 

As far as insomnia goes.....  The reason I was on Valium in the first place was because of sleep problems. I got accidentally addicted because I took it every night. Then I felt shaky in the mornings. So I took it in the morning too. The rest is history!

 

So throughout my taper ,oh yes, my insomnia was pretty bad on and off. It got worse every time I made a cut in my taper. I was on Remeron for about ten days consistently at the beginning of my taper, but I heard some scary things on line about the difficulties of getting off of it once you take it too long. I got really scared and tapered off of it in about five days with some sxs. Not too bad, mostly trembles and shakes. But I was on a small dose of ABOUT 3.75 to 7.5 mg a night.

 

My insomnia wasn't so bad that I needed every night anyway. So my doctor said I could try taking it only when I thought I needed it.  To this day, I take 3.75 mg only once about every 7 - 9 days. I keep a record of how much I sleep and take it only when I haven't slept at least 5 hours for  2 or 3 nights in a row. A very small dose, about 3.75mg is all it take to give me a good night's sleep. The reason I don't take it consistently is I don't need to, but mostly because I am afraid of getting addicted to another drug. My doc thinks I am foolish, but he is going along with my decision.  And of course, if I need it , in 3or 4 days, I will take it.

I do find that during my hold, my insomnia has NOT gotten worse. It may be a little bit better. I think that's because I am not cutting during my hold and my brain is healing, so perhaps that is why I am sleeping slightly better. But I also know that even before I was taking Valium, my sleep was diminishing for the past couple of years. It seems the older people get, the harder it. is to get more than 5-6 hours of sleep a night. At least it has been like that for me.

 

I guess I am lucky in a way because I never took any other benzodiazapam  drug, never had to do a crossover or anything like that.

 

Throughout my taper, I have tried, 5-HTP, , L-theanine, and 3mg melatonin

L-Theanine did nothing so I stopped it.  5-HTP did help a little but I read some bad things about it so I stopped it, and my sleep has not suffered without it. I am not sure if melatonin is doing anything at all. I think it helps to get me to sleep faster but not keep me sleeping longer. I have been assured by two doctors that melatonin can not hurt me, so I continue to take it. I may try Stopping it one day.

 

I never had much cog fog during my taper. It was not one of the wd sxs I experienced. I did and still do have morning anxiety and feel crappy sometimes in the mornings. It's not too terrible and I think that may be with me until I am off the drug completely. If I distract myself, and don't just lay in bed, it goes away and I am fine again in about an hour, the reast of my day is just fine.

 

Solitude seeker,

IMO , still feeling wierd at day 33 is not unusual at all. Give it more time, you are only at one month hold.  Hang in there you will get there. I was definitely still "wierd" at day 33 and having crazy wd sxs.

 

 

Bad Dove,

You sound like you are experiencing the craziness I had at about that same time in my taper.

IMO holding longer will get you to a much better place. But don't cut when you think your body has adapted. Wait longer, until you feel you are really stable and feeling just about normal again.

 

I hope you both find healing relief very soon.  Your turning point may be right around the corner.    Be strong and don't give up. I am right with you, not out of the woods yet and maybe not for another year. But I won't give up. Maybe slow down if necessary, but never give up!

I know how hard it is to hold. I am going to make one tiny cut in a few days, and I am still not 100% sure if making a cut now, even a tiny one, is the right thing to do or if I should hold even longer. But i feel just about normal most of the time, so I am going to try it.

 

I am writing about my experience, but please remember that everyone is different. Hey, I may crash tomorrow! I don't think that will happen of course, not at all, but just remember that benzo healing is  a roller coaster  and we just have to ride the waves and enjoy the Windows, and never give up. Just slow down when the wd sxs ramp up, don't cut when you're feeling bad. And when you're feeling good, remember to STILL Go SLOW, have patience and don't try to rush things.  You can't hurry your CNS into healing faster than it wants to heal. IT WILL HEAL, BUT IT WILL HEAL IN ITS OWN TIME FRAME, NOT YOURS

 

Hoping and praying for better days for all who struggle and continued success and good days for those who are in the midst of good times. .  :hug:

 

Heath

 

Oh boy, did I ramble! Sorry!

 

[[so...]]

You didn't ramble at all. Very much appreciate the info and encouragement. Thanks! Will keep on holding. 

[[ba...]]

Baddove absolutely adores Heathcliff.

 

Thank you for your comprehensive and detailed diary of your long hold experience.

 

Honey, I am spot on where you were at 8-9 weeks. Every day, and even every dose is unpredictable. The late afternoon has become my worst time recently, not the morning. 4 hours ago I was absolutely dying, laying in bed crying, now I just exercised for an hour and am making dinner. It's a crazy roller coaster.

 

I also started fainting this week????? However, that has happened before, it's just been a long time. And, sometimes when I'm reading, the words look upside down, that's freaky and new. Taking these things in stride.  I do feel like my roller coaster days and nights mirror what you went through.

 

I have gotten better at mindfulness: telling myself it's my CNS, it is healing. Pushing through the pain to do as much as I can that is normal. however, when those sxs slam me so hard, I lay in the dark and say "calm, calm. calm." and wait it out. And cry.

 

When I do catch a break, I tell myself my CNS has figured out how to release and monitor gaba, glutamine and adrenaline, even if it's not a full window, and even if it doesn't last long. When it's bad, I tell myself my CNS is confused and trying, but it is working, just too much and out of balance.

 

Thank you for your post, it is very encouraging. I am so happy for you, finally, your getting some ease off from the non stop torment. Like you, I am parking my skinny butt on this hold until I see significant change, something I have never had the patience to do.  Your experience tells me I am absolutely on the right track.

[[He...]]

Thank you to all buddies for your encouragement.

 

Heath :smitten:  :smitten: :smitten: