The Long Hold Support Group

[Guest [...]]

Well I had a 5 hour window Friday and got it slammed shut Saturday and today has been hell on wheels.

After 2 years of this hell it's getting unsustainable. I'm utterly worn down from depression and anxiety for the last 2 years.

I see my shrink and psychotherapist for a case review on Wednesday and Una from BAT is coming with me. She thinks I need to updose to get some stability and that's what I'm going to request but my shrink is insistent in treating the symptoms and not the cause (the benzo) and is offering ECT or Lamotrigine.

I don't want to updose but feel things could get out of control without some stability soon.

Sorry for moaning but I had to vent somewhere.

Steve

 

An updose and six month hold helped me last year. Good luck with your dr. visit. The problem is these doctors really don't get any of this at all. Stability is important!

 

Thanks NJ. That's the result I wany from Wednesday and have a good ally in Una with me. I'm just hoping and praying my shrink changes his attitude. My GP has written to him requesting a second opinion on my case as well so that will have consequences with his attitude for a guess.

Staz

[[He...]]

OH VALLEY, VALLEY, VALLEY, HOW ARE YOU? .....HOPE YOU ARE OK!                                We are missing you!

 

Heath

Valley was on April 27th, but he did not post anywhere, I so wish he would come back and let us know he is OK, he stepped in here when OP left this group high and dry. He is in My Prayers always.  Peace.

 

BEGOOD,

OP? I was not on BB when there was an OP so I don’t know who that is. Is that Oscar?

Well I guess that doesn’t matter now.

All I know is that it was YOU and VALLEY and ANNE and LYNN who together saved me. And of course there are other wonderful people here too.

I do hope VALLEY IS DOING OK. I believe he jumped at .5  I hope that was not too hard on him.

Thanks for letting us know he was onBB just a short while ago. It’s good to know he is still well enough to visit with us even if he is not posting.

 

Hey Valley, if you are there, remember we are here for you and think the world of you! Hoping you feel good!

[[ga...]]

My fellow LHSG BBs, so here is my report, the one I threatened with some posts back. 

 

I made it up to page 200 of the LHSG thread , reviewed my notes, analyzed some symptoms and their timeline, skimmed a book (thanks Gingermint for mentioning Dr. Breggin!), nixed the idea of cutting, considered updosing, felt conflicted yet again, and now think the "best" option is to hold steady. 

 

In case what I've gathered could be of any use to anyone, I enclose the below: 

 

Dosages while/at holding, gleaned from LHSG posts:

 

Found nothing that says holding at higher benzo doses don't work, though data/anecdotes on actual benefits of holding at higher doses is definitely more sparse than data/anecdotes from holding at lower doses, maybe just as an artifact of fewer people being on higher doses, don't know.  If I got any of the details wrong below, please feel free to correct any errors. 

• oscar - 7.25mg Librium, equivalent to 2.9mg Valium (held 15 months)
  
• freeme - 13.5mg Valium (held 5 months)
  
• laineyk - 7mg Valium (held 4.5 months)
  
• builder - 9mg Valium (held 2 years)
  
• Valley Um - 11.5mg Valium (held 6 months)
  
• lynn33 - 1mg Xanax (held 8 months)
  
• Julz - 2mg Klonopin (held 4 months)
  
• InnerSanctuary - 18.6mg Valium (held 8 months)
  
• Mr Anderson - 1.0625mg Xanax (held 3 months)
  
• FluterByee - 1.4mg Xanax (held 3 months)
  
• Julianna2014 - 4mg Valium (held 2 years)
  
• gardener99 - somewhere below 1.26mg Xanax after crossover to Librium (held almost 1 year)
  
• Heathcliff - 1.2mg Valium (holds of various lengths up to 3 months)
  
• begood - around 2.5mg Valium from what I could figure out
  
• Stut 55 - 2mg Valium (holding currently?)
  
• GreenCup - 2mg Klonopin (held 1 year)
  

Some relevant nuggets that I came across in various LHSG posts:

 

"Holding is a powerful tapering tool, is part of tapering and gives the brain and body a chance to catch up from accumulated cuts."

 

"Technically if you hold long enough, you should get to a point of stability regardless of the dose.  Most people don't hold long enough and continue to get hit with lag time of cuts."

 

"Holding at any level should bring stability except in very rare cases where the drug is toxic."

 

"That's the hard part of holding.  You don't feel better for what seems like quite a while and then start getting windows after a time, but it's anything but linear and there are times when you might subjectively feel worse."

 

"There are rare exceptions to not being able to stabilize through holding, but it's very uncommon as the body will work to create homeostasis given everything is a constant and no changes are made."

 

"The data for holding is overwhelming. It's the anxiety that usually causes people to cut while unstable as they cycle through sxs or don't improve right away. It takes time for the brain to adjust and we just have to give it that time.  I'd give it a good 6 months and see how you feel."

 

From Dr. Peter Breggin's book Medication Madness:

 

"There is no scientific reason to believe that the physical symptoms and pain suffered during withdrawal will cause further damage.  Instead, they are signs of preexisting dysfunction or damage [caused by the drug] that hopefully will clear up with time when the offending agent is stopped."

 

"It is as if we have so much brain power in reserve that a determined spirit can overcome a great deal of drug-induced residual malfunction … to live satisfying, productive, and happy lives."

 

"In an ideal world, your psychiatrist [or any prescribing doctor] would be eager to help you learn to live without toxic substances in your brain, but in the real world most psychiatrists [and other doctors] try to keep their patients on medications indefinitely."

 

This is impressive Delta! I'm not online as much as I used to be, but I popped in today and landed right at your post. I have just recently been trying to remember what my highest Librium dose was after my cross-over. I came up with around 70mg. I tapered down a bit right away to about 60 mg because L was so depressing I couldn't tolerate it. And then held. It was such a long hold, I should probably say this is my second attempt at tapering.

 

I guess it's time for an update on my current taper. And I see I also need to update my signature.

 

I'm tapering again with some short holds. Slowed my taper to take a class this past semester. That's over, thanks heavens. Decided to try a 10% reduction in April cutting 3 times/week. Was expecting to completely crash and was surprised when I didn't.

 

I'm now below 15mg. Librium comes in 5mg capsules, so I've kind of got a thing of wanting to get to 10mg to be at 2 capsules. I'm not sure why, but it's just been on my brain. When I hit 10mg I will do a short hold because I really need it. Then I'll probably slow down my rate and keep going. It will be at least another year to get rid of the last 2 capsules.

 

Pre-hold symptoms:

Sleep shot. Waking over and over and over and never falling fully asleep.

Moderate to intese neuropathy nearly daily.

Extreme agoraphobia.

Extreme monophobia.

In a daily panic trying to solve my problems, real and imagined.

In a daily panic because I couldn't solve my problems.

Derealization and depersonalization.

Extreme mood swings.

Crushing depression and everything that goes with it.

Unable to read, listen to music, watch most TV because of over stimulation.

Could only barely tolerate going to the grocery store. Had to wear earplugs and get in and out quickly.

Could not drive outside of my neighborhood. Sometimes could not drive at all.

 

Current symptoms:

Extreme fatigue that is getting worse each day. I see a short hold on the horizon.

Hypersensitivity to stress.

Bouts of sadness.

Mild to moderate neuropathy that comes and goes.

Sleep is shot (but was shot before the benzo; was told it was a safe sleeping pill )

Clumsy and a bit off balance sometimes. A few days of really bad vertigo that went away as mysteriously as they came.

Little spikes of agoraphobia and monophobia but they don't last.

Still don't like to drive but can drive across town on familiar streets to go shopping.

Sensitive to sound but no more need for earplugs. 

Still can't drive on the freeway, too much motion all around me.

 

Improvements as I've gotten Lower:

Able to take a really short nap in the afternoon when I'm tired (never could before, anxiety kept me awake).

Thinking more clearly.

Memory better.

Put weight back on. (Actually, a little over-improved there. )

Able to socialize a bit again. Joined a book club. Volunteer at the library.

Doing a bit of gardening again.

 

This trip down memory lane has been a good exercise for me. I tend to get discouraged by how long this is taking. I think I took the Xanax as prescribed for about 6 months before I got the bad news about benzos and started the long road to getting off. It's good to see that I've made significant progress while on this road.

 

Gard

[[ga...]]

Reached a milestone today.....I’m at .5 mg Valium. Took me 10 months to drop half a mg but I did it. phew!

Now I’ll go really even slower than before.  First I will hold for about 5 days. Then start up again.not sure. Maybe hold longer. ....... One day at a time!

 

HEATH :smitten: :smitten:

 

Even speed-reading this thread, I spotted this. YIPPEE!!!!! :yippee:

 

 

(Actually, I spotted a lot more but it's all jumbled in my brain. And this is my "improved memory." )

[[Gr...]]

Has anyone heard from Nova?  I haven't seen her post in a while. Not since she said she had to switch to that new doctor that was going to make her taper faster. 

[[ga...]]

Has anyone heard from Nova?  I haven't seen her post in a while. Not since she said she had to switch to that new doctor that was going to make her taper faster. 

 

I didn't see her during my speed-read, so I did a search and found her post on "joke of the day" today. ( )

[[Su...]]

Well I had a 5 hour window Friday and got it slammed shut Saturday and today has been hell on wheels.

After 2 years of this hell it's getting unsustainable. I'm utterly worn down from depression and anxiety for the last 2 years.

I see my shrink and psychotherapist for a case review on Wednesday and Una from BAT is coming with me. She thinks I need to updose to get some stability and that's what I'm going to request but my shrink is insistent in treating the symptoms and not the cause (the benzo) and is offering ECT or Lamotrigine.

I don't want to updose but feel things could get out of control without some stability soon.

Sorry for moaning but I had to vent somewhere.

Steve

And this is the place for that kind of talk.... If we can't be honest about how tough this is here, then where can we? 

I do so hope that things ease up for you soon and that Una can help with whatever the right next step is for you.

Please be well...

SS

[[Su...]]

Hi Gard!

Good to see that some many of your sxs are easing up atm...

Always get to have you check in with us here!

SS

[[He...]]

Hi Gardner!

Thanks for the Yippee

Good to see you here.

One of my most favorite improvements as I got lower and slower was and is the ability to take a lįttle nap 😴 in the afternoon. Also the feeling of actually being SLEEPY is another plus.

So glad your sleep has improved. Getting better sleep makes everything that much easier to handle.

I REMEMBER HOW HORRIBLE IT WAS TO GET SO LITTLE SLEEP.

Hope your improved sleep continues and that your taper gets easier and easier.

 

Heath :smitten:

[[He...]]

NOVA....WHERE ARE YOU? HOW ARE YOU? You are missed! Hope you are ok! Please pop in and tell us how you ar doing.

 

Heath

[[St...]]

Hi folks.Gardiner great to see your hold appears to definitely have helped.That really does give everyone holding hope.

    Nova l hope your not on because of the better weather we are having at the minute.Hopefully your GP has backed off.

    I would write a long moan but to be honest with you l am sure you have all heard it a million times before.l will just say l have a lot of life stress going on and it will continue over the summer so nothing is easy.

    Love to all Stut X

[[be...]]

NOVA....WHERE ARE YOU? HOW ARE YOU? You are missed! Hope you are ok! Please pop in and tell us how you ar doing.

 

Heath

This 🐢 I feels the same way. 💖 Peace and Hugs.

[[NJ...]]

Hi folks.Gardiner great to see your hold appears to definitely have helped.That really does give everyone holding hope.

    Nova l hope your not on because of the better weather we are having at the minute.Hopefully your GP has backed off.

    I would write a long moan but to be honest with you l am sure you have all heard it a million times before.l will just say l have a lot of life stress going on and it will continue over the summer so nothing is easy.

    Love to all Stut X

 

Stut,

 

Hope you get some relief once the life stress calms down. Now that I am more settled in my job, my tummy is much better. And I am sleeping mostly well; getting up earlier in the morning seems to have helped the insomnia.

[[St...]]

Good news NJ l am so glad the nausea has eased off.

    My anxiety is through the roof so struggling and stress is unbearable but l hope everything works out over the next number of months.Thank you.

  Love Stut X

[[Gr...]]

Argh, my window has ended with nausea and upset stomach.  I am really starting to think I am sensitive to eggs and chicken.  It always happens after that, but that just seems so strange.  Luckily that seems to be the only thing bothering me right now and it's not too bad. 

 

I guess I am holding now.  I am so afraid to cut again, at this point.  My husband and I are buying a house, in the next two months, and then moving. 

 

I feel like I just, only just, like a week and a half ago, got to this place, where I am not angry all the time.  I finally feel like I can look past the anger and see what is really bothering me.  I really don't want to go back to how it was before, where I was just angry all the time and my husband and I were fighting all the time.  I'm not sure how long I am going to hold, but for now, I am holding and have been since March 25th. 

[[Ol...]]

Sorry to hear that GreenCup. Maybe it is just a wave and it will pass quickly. Now that you are aware of the anger being related to the w/d maybe it will help you to not spiral. We bought a house and moved during my benzo w/d so just letting you know it can be done, it's hard but doable, especially if you have some help. Hang in there!

I recently read an article talking about sniffing isopropyl alcohol for nausea. I'm not sure what affects that would have on your lungs and I am certainly not suggesting it as a long term solution, but I will say that I tried it the other day and it really helped!! Here is the article:

https://www.nytimes.com/2018/03/13/well/live/a-cure-for-nausea-try-sniffing-alcohol.html

[[...]]

Staz..... I'm sorry you are having such a hard time  ( And anyone else who is struggling at the moment).

I wanted to say , I have noticed that some people take lamotrigine and it is a potent glutamate blocker, which is a lot of what we suffer.

I am by no means recommending another drug, but I wanted tosay that in case it's worth putting into your consideration as to how you can move forwards,

 

I have also hit a wall for some time now , I have managed a few VERY small reductions, and am not in great shape at all. Over all I've cut less than 1/2 mg of valium equivelant in a year! And I've been quite sick the whole time.

I believe at some point we will get our break, we all get there in the end.

 

GArd- nice to see you and  thanks for the breakdown of your process. you have come  a long way

Stut- sorry you are having stresses 

Hi Heath and Begood,  NJ, Greencup, Cant , Free, SS , Delta, Bob , Olive, and anyone else I've missed

VAlley , we miss you

Ajusta (Hope you feel better soon and things improve for you)

 

My Mum is now in a rehabilation place ,which is much better than the hospital.  It's closer for my Dad to visit and a couple of the staff she knows from Church, so I'm not worried anymore , it's a relief to have that stress gone. THank you all for your well wishes

 

I am ok, bit of a rough day today, tooks some extra gabapentin which I haven't done in a while, it's amazing how much a bit of extra gaba helps, me anyway. I've decided to just do that when I have a really bad day, and I seem to have managed ok to keep my basic dose at 300 mgs, hopsing that will continue.

 

Ive been having nightmares, I;ve never had this symptom before , It was always nice to go to sleep! LAst night I dreamt I fell out of a window where I was at a party , and was holding on to a root of some kind, and there was a woman telling me to let go and I'd be ok ! But I was too scared as it was a loooong way down . I've had a dream like this before, where I'm falling from a great height .

the last one I had driven my car with all my posessions over a cliff   only in this dream I knew it was ok to jump out of the car, which I did, and I just floated, it was really nice....  clearly letting go dreams!

last night I had to climb my way out of the situation though and no one was helping, even though there were people around...

Might be time to do some dream work?

 

love to everyone 

MiYu

 

My latest thoughts on Valley- he's such a trouper and always positive and helping people here , I'm thinking he might not want to come back and post if he's having a hard time....

Valley ,we are here if you need support- you've always given so much , you deserve to receive whatever we can give , if you need it, love, MiYu

 

 

 

 

[[...]]

Good evening MiYu,

 

I am so sorry you are struggling at the moment.  It is such a bummer.

 

It will pass.  Hang on.  There are times when I wondered if a wave was permanent but then I get a window.  You will too.

 

I started taking some magnesium recently and for what it is worth, I feel better.

 

Bob

[[Ca...]]

Hi Guys...

Just a quick catch up...

 

Miyu, so glad ur mum is "safe"... -well that was what I called it when I made it to a good or friendly place within the hospital and recovery system... It sure does help healing times...

Sorry things are rough for you atm, -you will find your way through...

 

Stut, wishing you strength... I hope the stress and anxiety dont get too much, Im not sure how I would go if anxiety was a main SX for me...

 

My best to Everyone... And thanks for being here for each other...

 

[[...]]

Good evening MiYu,

 

I am so sorry you are struggling at the moment.  It is such a bummer.

 

It will pass.  Hang on.  There are times when I wondered if a wave was permanent but then I get a window.  You will too.

 

I started taking some magnesium recently and for what it is worth, I feel better.

 

Bob

[/quote

 

thank you Bob , I just pulle d out my bottle of mag malate, maybe I'll try some tomorrow, I feel like my nervous system really needs some help.

 

MiYu

[[Ol...]]

I use Mag Glycinate and I think of my w/d as 'before Magnesium' and 'after Magnesium'. It has helped me so much!

[[Es...]]

I use Mag Glycinate and I think of my w/d as 'before Magnesium' and 'after Magnesium'. It has helped me so much!

 

I use Mag Citrate 200 mg at bedtime and it works great. Have some Mag Glycinate from Pure Encapsulations. Will soon give it a try. Cost a fortune. I hope it works.

 

 

[[Aj...]]

Magnesium seems to make me worse. It’s annoying because it helps with my serious constipation since withdrawal.

 

 

I don’t know what to do.

 

I’m holding but symptoms are getting worse. The DR/DP and cognitive deficits are getting worse the longer I hold.

 

Also when I take my dose it feels horrendous - creepy and trippy. When it wears off I feel like I’m being squashed all over.

 

I know there is nothing anyone can say or do but how the hell am I going to ever taper down again.

 

Last time I didn’t get any bad symptoms until I was almost off and then everything went mental.

 

I can’t bear the thought of going back to that place. I was constantly spasming all over, couldn’t feel body at all, could only eat rubbish because everything else was disgusting, the whole world terrified me, I couldn’t touch anything, even paper was too loud, everything was totally unreal and frightening and I was crying constantly.  I can’t go back to that place.

 

 

For the sake of our membership, all references to self harm and/or harming others have been removed from this thread. Please click on the following link if you are thinking about suicide, self-harm, or harming others: Self Harm and Ideation - Revised Policy

[[ca...]]

Hello grp,

 

      My first time reading this thread. Hoping to inspire someone,perhaps even acquire a couple more buddies.Though, I no longer take ativan,I will probably never forget the experience.

 

 

                Cakemaker

[[Ca...]]

Hi Cake...

A great little group here.. imho..

Glad you are free, some of us are getting close...

Others finding their way...

Good to have you along for the ride....