The Long Hold Support Group

[[ki...]]

Trina, fingers crossed that Aunt Martha isn’t too rough with you this cycle! 

[[Ma...]]

Hey everyone, if I understood correctly, the Federal Government just changed their vaccine rollout to 1a and 1b, across the US.    1a is 65 or above.

1b is 64 or below with a morbidity, so if you fit into any of those and want the vaccine, just check your local sites and see if it has changed yet.  It may take a few days who knows to get in place.  Just want everyone vaccinated that wants one.      :smitten:

[[Be...]]

I posted this on the Valium support group, and am reposting it here, It is a response that Mary5588 made regarding the definition of stabilization. And she said this is a great place to hang out.

 

 

You want to stabilize and it's going to take time, stabilize doesn't mean those symptoms will go away, it means they will become more tolerable.

 

 

"I got to that point after my reinstatement, the symptoms were tolerable, so my Provider and I decided to start with a small cut of half a 1 mg Diazepam. We thought I should start slow. Symptoms have been brutal at times, the headaches the worst. But also pressure or fullness in my ears (often worse in the left), and alternating between feeling cold (usually at night and in the am), then too warm (afternoons and evening. I guess this is part of the process, I only just started the cut (less than a week). My provider and I agree this is going to be a long process, and she's letting me control my taper. The headaches are the worst though, I ice my head, take Tylenol, ice gives temporary relief. So your comment helped me understand stabilization, which I clearly am not right now, and may not be for a couple weeks or longer (And I guess that's why there's the Long Hold Support Group)."

 

 

I feel so frustrated, nothing relieves the headaches. Why am I having them? I almost want to give up. I just wish I knew when they would go away. They are destroying my resolve, before I made the small cut, I felt relatively stable, but now I'm a mess.  :'( :'( :'(

[[Ma...]]

BenzoLottie,  I take an nsaid/Tylenol mixture.  It's a Goody Powder, I know nsaids shouldn't be taken often, but when I take 1, they help a lot more than Tylenol alone.  I was watching the news one evening, awhile ago now, and a Dr came on and was talking about pain meds.  She said a study showed a combination of nsaid and acetaminophen do almost as well as some opioids.  I can't take opioids, they make me really sick, but I bought the Goody powder and they definitely helped more.

Just incase you want to give them a try 

 

 

[[Be...]]

Hey everyone, if I understood correctly, the Federal Government just changed their vaccine rollout to 1a and 1b, across the US.    1a is 65 or above.

1b is 64 or below with a morbidity, so if you fit into any of those and want the vaccine, just check your local sites and see if it has changed yet.  It may take a few days who knows to get in place.  Just want everyone vaccinated that wants one.      :smitten:

 

Thanks for the info, checking the state's website.

[[Be...]]

BenzoLottie,  I take an nsaid/Tylenol mixture.  It's a Goody Powder, I know nsaids shouldn't be taken often, but when I take 1, they help a lot more than Tylenol alone.  I was watching the news one evening, awhile ago now, and a Dr came on and was talking about pain meds.  She said a study showed a combination of nsaid and acetaminophen do almost as well as some opioids.  I can't take opioids, they make me really sick, but I bought the Goody powder and they definitely helped more.

Just incase you want to give them a try 

 

 

I took an NSAID instead of Tylenol today, I guess I'll take Tylenol now too.  Thank you!

[[Ma...]]

BenzoLottie,  I take an nsaid/Tylenol mixture.  It's a Goody Powder, I know nsaids shouldn't be taken often, but when I take 1, they help a lot more than Tylenol alone.  I was watching the news one evening, awhile ago now, and a Dr came on and was talking about pain meds.  She said a study showed a combination of nsaid and acetaminophen do almost as well as some opioids.  I can't take opioids, they make me really sick, but I bought the Goody powder and they definitely helped more.

Just incase you want to give them a try 

 

 

I took an NSAID instead of Tylenol today, I guess I'll take Tylenol now too.  Thank you!

Hope it helps.  Migraines/headaches are miserable 

[[Ol...]]

I often take a mixture as well. It works!

[[Be...]]

BenzoLottie,  I take an nsaid/Tylenol mixture.  It's a Goody Powder, I know nsaids shouldn't be taken often, but when I take 1, they help a lot more than Tylenol alone.  I was watching the news one evening, awhile ago now, and a Dr came on and was talking about pain meds.  She said a study showed a combination of nsaid and acetaminophen do almost as well as some opioids.  I can't take opioids, they make me really sick, but I bought the Goody powder and they definitely helped more.

Just incase you want to give them a try 

 

 

I took an NSAID instead of Tylenol today, I guess I'll take Tylenol now too.  Thank you!

Hope it helps.  Migraines/headaches are miserable 

 

I took the Tylenol too, headache still there, not as bad as yesterday, but still there. I'm getting the impression this isn't common, because I even made a post yesterdaay and got little response. I'm looking at whether a supplement I'm taking might have something to do with it, and found my mult-vit is loaded with B Vitamins, which many say causes them issues, revs up their symptoms. Stopped the multi-vit, see if that makes a difference. It's One-A-Day 50 Plus, and I usually take half a pill, but it has like 600% or more B vitamins in a whole pill, so that's like 300% or more in a half, still way to much. Hoping maybe that was it, we'll see.

[[Gi...]]

BenzoLottie,

 

I also had bad headaches.  I found that two tylenol and one ibuprofen provided the best relief.  If ice doesn't help, try heat.  Also peppermint sometimes helps my headaches too, lozenges, peppermint essential oil in a diffuser or both.  Ginger

[[Be...]]

I was reading this thread, http://www.benzobuddies.org/forum/index.php?topic=9522.20 And found this reply,

 

Holly...

I have read over all of your posts in great detail. I think what you need right now is a LONG HOLD. You've c/t'ed, reinstated, tried to rapid taper...you just need to HOLD at the 10mg. I have been in touch w/ BATAID (see www.bataid.org) and they recommend a LONG hold when one is looking for stability before starting a taper plan after a c/t or an over-rapid taper.

 

Here is an e-mail I received from BATAID in regards to getting stable...(Also, keep in mind that b/c your receptors have already been messed with due to the c/t and over-rapid taper you did), you most likely aren't going to feel "normal" or "symptom free", but you should feel better and symptoms should be more tolerable.

 

Anyhow, the e-mail: "It does take a while to stabilize.  The answer to your question about stabilizing or not, the answer is that usually it does.  However in rare cases it doesn’t seem to, although this may be because the person hasn’t waited long enough."

 

So, you may need to just do a LONG hold for 3 weeks to 2 months, just sitting on the 10mg dose of V in hopes that you'll get some stability. Valium can be tricky like that and take a LONG time to get you some stability back. This is what I would do if I were in your situation.

 

 

I held for the full two months, after reinstating froim 10 days off Valium. But apparently I am not as stable as I thought I was, I regret trying the .5 reduction in my dose. I'm clearly not ready. So I guess I am stuck having to hold even longer, or go back up to the fulll 12 mg from the 11.5 mg I'm on now. I'm sure the recommendation is to not updose, but to ride it out, though I am so miserable I can barely function. No OTC meds are helping the headaches, just constant rotation of gel ice packs. And here I thought I was stable enough, apparently not.

 

I was originally on Klonopin .5 or .25 depending on how I felt (due the Hypomagnesemia from long-term PPI use, see link in my sig), and my then provider had me stop the afternoon dose, then the morning, and I briefly took Gabapentin (which didn't really work). I went back on the Klonopin at the lower dose after a week off. I seemed to stabilize quickly. Switched providers who switched me over to Valium 12 mg (so I'd have a little leeway, plus my body adjusted to the lower .25 mg Klonopin dose, so we didn't do the 20 mg Ashton recommmends. We felt it best to go with the lowest dose I felt good on.) I felt great on the Valium, quickly adjusted, from the crossover from the Klonopin, which led to my rapid taper. I felt allright during that taper, but 10 days after I stopped the W/D's hit big time. I reinstated at the advice of several, because I still had Valium in my system.

 

I so wish I didn't do the rapid taper, I would've been further along on my taper now. How long have people held, how do I figure out how long do I hold? Obviously, I was not ready for that .5 mg cut. Didn't think such a tiny cut would make me such a wreck. I'm autistic too, so I have been stimming a lot, something I had stopped doing as I grew into adulthood. I'm so lost right now, and suffering as though I C/T'd just from a small cut of less than 10%.  :'( 

 

I need some words of wisdon and encouragement right now. I honestly don't know how anyone survives a C/T when I can't manage a .5 mg reduction of Valium.

 

So two months after reinstatement, my new provider and I decided to try a small 1/2 mg cut to see how I'd do. I thought I was stable enough, apparently I was wrong. 

[[se...]]

So sorry you are struggling.  I too started with a big reduction (based on the amount I am using).  It took me one month to stabilize and then I began reductions of 2.5% per month and eventually started doing it per week. 

 

You will stabilize, your bod will let you know when it is time.  Best of luck to you...

[Guest [fl...]]

Hi Ladies! I hope you all are doing well. I was just curious what kinds of symptoms tend to linger past the third month, sixth month and so on. I know this varies a lot, but I’ve heard that physical symptoms tend to persist longer than mental ones.

 

I usually have a 22-24 day cycle but...say 25 and nothing. Huge swings the last two weeks with windows and waves. Today I had huge windows and waves by the hour! That’s never happened. I’ll feel normal, then suddenly agitated, go for a walk, totally better, and on and on until now, my nighttime window. Jeesh. I was thinking PMS, but I’ve been thinking that for a while with no cycle. At about 100 days off, I didn’t expect to lose my cycle now...

[[Be...]]

So sorry you are struggling. 

You will stabilize, your bod will let you know when it is time.  Best of luck to you...

 

Thank you. I just posted on the withdrawal board that I fell and had to call 911 to help me get up because I'm disabled. Been feeling dizzy all day, somehow lost my balance. I'm using my walker to get around, put reach stick by door, and will need to carry phone with me I guess. I hope all this eases up soon. I'm scared for my future.

[Guest [...]]

Hi Everyone:

 

I've been gone for a week, as I've had the worst pain !!!

I've been transitioning to liquid Ativan and it isn't going well!

 

My entire body hurts, literally everything!

 

It is way worse around ovulation, have akathisia.

 

But by far the worst symptom now is the tailbone pain!!!

Is this normal, how the hell can anyone live through this pain - I can't sit down.

All my back muscles have seized up and I can hardly walk sometimes.

I cry and sometimes scream for hours, it hurts so much!

 

Please tell me how this gets better.

I'm feeling quite hopeless right now!

Mentally, I'm also quite unstable, I can't do anything with my family at all!

Every time they try and talk to me I jump like a scared cat or something, my arms flail up and the pain in my head is crazy!

 

I just don't know how to go on......

 

Winnie  :'(

[Guest [fl...]]

Aw, WinnieDog I’m so sorry. Have you reduced your dose or is it just a change to liquid? If you are reducing it sounds like normal hellish benzo withdrawal. I can’t do much during the day either due to the agitation, so I understand. Hugs.

[[tr...]]

Winnie: OMG I can relate...the tailbone pain was the worst for me I think in like month 9? Pain and burning at the same time. The past couple months have been muscle pain/cramping/stiffness. Comes and goes but when it comes its rough. I found heat helps and massage if you can stand it. I literally went to physical therapy for a bit and he did these isolated massages for me.

I found gentle stretching multiple times a day can be beneficial as well as long hot showers.

I hate that sometimes I get random shooting pains and I cry out a bit bc it comes out of nowhere and it's sharp!

 

Fluffer: In my personal experience the physical is more prominent than the emotional/psychological now (but it still pops up..). Everyone's months can differ so its hard to answer your question. But just when you think you've figured out a pattern for your symptoms - it will change 

But this is month 11 for me, and I was able to go back to work this week part time. So far ok, except today on my day off I'm hit with benzo flu (its bc period is coming). 

 

One thing I have and have read others having is 'one sided' symptoms...like my muscle cramping/burning is worse on my one side. Or tinnitus for the longest time was one sided. My one hip feels like someone kicked it. So bizarre.

 

 

 

[[Ma...]]

BenzoLottie, I am so sorry you fell.  I know that was scary.  That just makes me feel you need to hold even more.  We are here for you.  I hope you aren't too sore.  Mary 🙋🏼🙋🏼🙏🙏😘😘😷😷

[[ki...]]

You ladies have described it so well, the tailbone pain and I also get it in my thighs. It feels like it’s running right along my femurs. I have it a bit today, but otherwise ovulation has been relatively uneventful this month. I’m grateful for the much needed break.

 

Sending you all love and light. ❤️

[Guest [...]]

Thanks so much!!

 

Another question?

Does anyone else get engorged breasts?

 

This is so new for me!

I had lost so much weight that my boobs were really droopy!

I even had a mammogram in late Sept and they were literally pancakes.

Now that they are all full again, although I haven't regained a lot of weight.

They are also really hot underneath too!

 

Basically my entire body feels like it is falling apart.....

 

winnie  :'(

[[tr...]]

Thanks so much!!

 

Another question?

Does anyone else get engorged breasts?

 

This is so new for me!

I had lost so much weight that my boobs were really droopy!

I even had a mammogram in late Sept and they were literally pancakes.

Now that they are all full again, although I haven't regained a lot of weight.

They are also really hot underneath too!

 

Basically my entire body feels like it is falling apart.....

 

winnie  :'(

 

Totally forgot I had the "hot underneath" thing happening at one time as well!! That was about 4 months ago. Good news is its gone now - yours will too eventually.

I still get tenderness randomly.

 

FYI guys, I  had such bad benzo flu yesterday. But today was basically a window. Tomorrow I'm supposed to be menstruating. Truly nothing is predictable anymore..

[[gi...]]

BenzoLottie,  I take an nsaid/Tylenol mixture.  It's a Goody Powder, I know nsaids shouldn't be taken often, but when I take 1, they help a lot more than Tylenol alone.  I was watching the news one evening, awhile ago now, and a Dr came on and was talking about pain meds.  She said a study showed a combination of nsaid and acetaminophen do almost as well as some opioids.  I can't take opioids, they make me really sick, but I bought the Goody powder and they definitely helped more.

Just incase you want to give them a try 

 

I took an NSAID instead of Tylenol today, I guess I'll take Tylenol now too.  Thank you!

Hope it helps.  Migraines/headaches are miserable 

 

I took the Tylenol too, headache still there, not as bad as yesterday, but still there. I'm getting the impression this isn't common, because I even made a post yesterdaay and got little response. I'm looking at whether a supplement I'm taking might have something to do with it, and found my mult-vit is loaded with B Vitamins, which many say causes them issues, revs up their symptoms. Stopped the multi-vit, see if that makes a difference. It's One-A-Day 50 Plus, and I usually take half a pill, but it has like 600% or more B vitamins in a whole pill, so that's like 300% or more in a half, still way to much. Hoping maybe that was it, we'll see.

 

BenzoLottie, I did not know that about the B vitamins! And I feel like I’ve been trying to (slowly) wean down for years now; you really do learn something new everyday. Thank you! I hope you are feeling even a little better. It sounds like a scary day/time. We can try to focus on the positive but absolutely good luck to you. 🙏🏼

[[Be...]]

BenzoLottie, I am so sorry you fell.  I know that was scary.  That just makes me feel you need to hold even more.  We are here for you.  I hope you aren't too sore.  Mary 🙋🏼🙋🏼🙏🙏😘😘😷😷

 

Amazingly not sore, maybe because I landed on the area rug. Thanks for caring. I am carrying my phone with me, and am getting a lockbox installed so rescuers can retrieve a key to open the door. That way if this happens again (I hope it doesn't), I can give the 911 operater the lockbox code so rescuers can retrieve a key and let themselves in.

[[Be...]]

 

BenzoLottie, I did not know that about the B vitamins! And I feel like I’ve been trying to (slowly) wean down for years now; you really do learn something new everyday. Thank you! I hope you are feeling even a little better. It sounds like a scary day/time. We can try to focus on the positive but absolutely good luck to you. 🙏🏼

 

A number of BB users have said B vitamins rev them up or make their symptoms worse. Apparently I found that to be true in my case. I am feeling beter headache-wise, but other symptoms have taken over. It's like when one monster leaves, another shows up.

[[Ma...]]

BenzoLottie, I am so sorry you fell.  I know that was scary.  That just makes me feel you need to hold even more.  We are here for you.  I hope you aren't too sore.  Mary 🙋🏼🙋🏼🙏🙏😘😘😷😷

 

Amazingly not sore, maybe because I landed on the area rug. Thanks for caring. I am carrying my phone with me, and am getting a lockbox installed so rescuers can retrieve a key to open the door. That way if this happens again (I hope it doesn't), I can give the 911 operater the lockbox code so rescuers can retrieve a key and let themselves in.

 

I'm glad you aren't sore and are taking a few more precautions.