The Long Hold Support Group

[[He...]]

MIYU

 

MAY I SUGGEST THAT YOU NOT CHANGE MORE THAN ONE THING AT A TIME?

If you go up to 8 mg v and add 50 mg gabapentin, how will you know which one is helping you?

May I suggest , if you are going to updose, why not leave everything else the same as it is for a few weeks until you see if the updose is helping or not.

 

I don't know if my opinion holds water or not but just thought I'd give you that info. I always heard that you should make any change to any medication, one at a time.

 

Good luck whatever you decide. You certainly deserve a break!

I know you've been in a big wave for some time now and wish only the best. I sure hope the updose helps!

Heath

[[He...]]

I CANNOT TAKE CREDIT FOR THE FOLLOWING QUOTE. I DIDNT WRITE IT. BUT I DID REPOST IT FROM NOVA's post. I actually don't know whose quote it was.

 

"Thank you for verifying what I kind of suspected. There has been, and continues to be that window/wave pattern to this hold. I actually wasn't sure if this was something unique to me, but even then, I figured I just had to continue holding whether it is unique or not.

 

And now that the 6 month time has past, I'm going through another wave. So I'll definitely be continuing the hold. I didn't realize that this was typical of benzos at all, but its more knowledge that not only helps me "cope," but it's knowledge I think I need to be able to relay to others if the need arises. It almost feels like "Part 2" is happening now with this continuation as sx are changing, and yet they still are definitely sx of an unstable CNS.

 

I have to admit that the hold itself with these windows and waves is a stressor all by itself. When the windows occur, I'm consistently myself all day and evening, and this lasts for about a month to 6 weeks, but with that last two weeks I start slipping into a wave kind of gradually, and I don't always see it coming. And then, I'm fully in that wave, and I'm not me consistently throughout the day, and it's even hard to fully remember how good I felt during the window. And it feels kind of awful with some emotional, physical and cognitive sx.

 

I'm glad I'm here too! Thank you for saying that. I've learned a lot the hard way about benzos, and I'm glad to share what I do know."

 

NOVA

I just reposted the quote you posted because I couldn't post the whole conversation, for some reason,I don't know why.

 

Anyway I just wanted to thank you. That was a great post and it certainly makes sense and clears up why I feel the way I do at times. Makes me feel better! The ups and downs of this process is quite disgruntling! No wonder so many people have such a hard time getting off these benzos.

I know you have been suffering for quite a while. I hope you find relief real soon.

 

Heath 

[[Va...]]

Hi everyone .... Hope all are well or coping with waves if that's what's coming.....

I seem to never  really get out of one! I occasionally have a few better hours in a day, but what's bothering me most right now , is , after only cutting 1/4 mg in six months, I tried again to make a tiny cut .... 1/30th of 1/4 mg ..... Which is my test amount cut , and I'm In a horrible wave , I feel awful , anxiety , weakness , fatigue , shaky ..... It's been a week and today is worse . I'm feeling like I just can't taper and don't know what to do. I'm not stable, and I don't know if I'll ever get stable.

 

Do these tiny cuts upset everything and is it like starting over again with a hold? I just don't get how I could be this unstable. I'm frustrated with the amount of symptoms I have with such a small reduction ,it just doesn't seem possible , but it's what's happening .

I expect it will improve , but I'll never get off like this. This is just too much suffering for such a small cut.

venting , I'm fed up with it ,  there's no way I want to updose , some might disagree ..... So I guess my only option is holding . I just wonder if I can actually taper Valium , whether it might just not be the right med for me....

Of course even dr Madill has no real insight into this. And he's supposed to be a specialist. I honestly don't know anyone , except maybe Nova, who has had this much trouble reducing.....and for a relatively short term use of benzos altogether ....

 

Very frustrated ...... 

 

MiYu

Unfortunately with benzos, even the smallest cut can cause sxs. Have you ever been stable during your taper? --V

 

Hi Valley , no , I don't think I've ever been stable since I started tapering . I was stable ish before I started , I actually felt pretty good for a couple of weeks after I finished my cross from K to V , almost normal......I could walk quite far and felt really ok. As soon as I started cutting I went into WDs . And I started with DMT . I never did cut and hold.

So since the beginning of my taper I've never been stable , even with the six months of super slow.....

Hi MiYu. Sorry to hear about the difficulties you're having. Holding longer would probably help. At least that has been my experience. I saw the updosing question and it may be something to consider. Have you posted on the updosing support group? Hope you get to a stable place soon! --V

 

Thanks Valley 

Thanks to you and the great support here, and Nova's post , I'm going to go back to 8 mgs , stay there for a while and see how I do . I want to find out what stable feels like!

I'm also going to add back in 50 mgs gabapentin in the mornings and see if that helps .

I'm taking 2 mgs LDN , do you know if it's supposed to help depression? I think being depressed is not helping my process , the mind gets so negative about life .im thinking I should try upping my LDN to 3 mgs and see what happens ......so far it hasn't helped with pain relief, I think it helps with energy.

What time of day do you take yours? I've been taking mine around 5 pm , then it doesn't interfere with my sleep at all.

Thanks for everything Valley , so glad your taper is going well now..... There is hope!

Love, MiYu

Hi MiYu. I take 4.5mg of LDN at bedtime. My dose is high due to years of opiate use for back pain. It really does seem to help with the depression although I still can't shake it for a couple of hours first thing in the morning. I agree with Heath in that only one change at a time is recommended to know for sure which change is making the difference.  --V

[[Va...]]

Just new but I'd like in as I know I need to hold and stabilize for awhile after my doctor cut me from 2 K down to .25 in less than a month!  Thank God I had the sense to finally stop and come looking for you guys.

 

Wishing everyone well.

Glo

Welcome GG! Is there a possibility of adding back some K? That is a huge drop IMO.  --V

[[ly...]]

Just new but I'd like in as I know I need to hold and stabilize for awhile after my doctor cut me from 2 K down to .25 in less than a month!  Thank God I had the sense to finally stop and come looking for you guys.

 

Wishing everyone well.

Glo

Welcome GG! Is there a possibility of adding back some K? That is a huge drop IMO.  --V

 

Hi GG,

 

How are you doing?  I had a large first cut and it took me 3 months to get to a place where I could continue my taper.  I hope things are ok.

[[Al...]]

Open question to group.

 

Is it OK to use melatonin on a regular basis to help with sleep?

 

 

Thank you

 

ATU 🙏

[[be...]]

Just new but I'd like in as I know I need to hold and stabilize for awhile after my doctor cut me from 2 K down to .25 in less than a month!  Thank God I had the sense to finally stop and come looking for you guys.

 

Wishing everyone well.

Glo

Welcome GG! Is there a possibility of adding back some K? That is a huge drop IMO.  --V

 

Hi GG,

 

How are you doing?  I had a large first cut and it took me 3 months to get to a place where I could continue my taper.  I hope things are ok.

[glow=red,2,300]"Welcome"[/glow] GG, a great group here. Wish you well on your Journey to Wellness. :smitten:

[[Va...]]

Open question to group.

 

Is it OK to use melatonin on a regular basis to help with sleep?

 

 

Thank you

 

ATU 🙏

I use 1mg every night.  --V

[[be...]]

Open question to group.

 

Is it OK to use melatonin on a regular basis to help with sleep?

 

 

Thank you

 

ATU 🙏

I use 1mg every night.  --V

Hey ATU, a good question, never thought of taking anything for sleep, but I do not get much sleep, will follow and read posts here. Valley is it something that we have to wd from....? :smitten:

[[Va...]]

Open question to group.

 

Is it OK to use melatonin on a regular basis to help with sleep?

 

 

Thank you

 

ATU 🙏

I use 1mg every night.  --V

Hey ATU, a good question, never thought of taking anything for sleep, but I do not get much sleep, will follow and read posts here. Valley is it something that we have to wd from....? :smitten:

Hi BG. It is a natural hormone that is released with sunlight exposure. There is no need to withdraw from it.  --V

[[...]]

Open question to group.

 

Is it OK to use melatonin on a regular basis to help with sleep?

 

 

Thank you

 

ATU 🙏

ATU , I take 1/2 mg sustained release melatonin every night , works for me very well and I don't need much. You are pretty sensitive so you might only need a little. For a while I only took 1/4 mg and that was enough.

I have read that benzos deplete our natural melatonin . Personally I don't care if I had to stay on it for life .... It's worth it for the sleep

MiYu 

[[be...]]

Open question to group.

 

Is it OK to use melatonin on a regular basis to help with sleep?

 

 

Thank you

 

ATU 🙏

I use 1mg every night.  --V

Hey ATU, a good question, never thought of taking anything for sleep, but I do not get much sleep, will follow and read posts here. Valley is it something that we have to wd from....? :smitten:

Hi BG. It is a natural hormone that is released with sunlight exposure. There is no need to withdraw from it.  --V

Thanks V, I will do some research, and go from there, not sure I really need it, but maybe... :smitten:

[[Al...]]

Thanks for all the responses. I have been using it not every night but probably 4/7 nights and it he

Ps me sleep.

I just thought I would ask and look forward to more replies.

 

:thumbsup:

 

ATU 🙏

[[be...]]

Thanks for all the responses. I have been using it not every night but probably 4/7 nights and it he

Ps me sleep.

I just thought I would ask and look forward to more replies.

 

:thumbsup:

 

ATU 🙏

I was wondering does it help to keep you asleep, the thing I have is that I can sleep, but tend to get up way too early, maybe 4=5 hrs of deep sleep, I would like to sleep a bit later. But I can handle it as long as I sleep.

[[be...]]

Sending everyone love , thinking of you .... Happy for those doing well!  and lots of hugs for those having troubles ...... Hang In there,

MiYu  :hug:

Hang in there MiYu, nothing about benzo's is easy, with some time and no tapering you will become stable enough to restart. I am a believer that the time spent feeling better is a win win, I truly believe that is why I am doing well now. Trust me I know that any time things change, but I would hold again for as long as I could feel able to be functional. I guess being miserable is not an option for me, as I know what hell looks like times 2 and I have no urgent desire to ever go there again. Stay Strong, do not give in to benzo lies that will try to trip you up, you can and will do this your time will come and time goes by faster than you think. :smitten:

[[Al...]]

Thanks for all the responses. I have been using it not every night but probably 4/7 nights and it he

Ps me sleep.

I just thought I would ask and look forward to more replies.

 

:thumbsup:

 

ATU 🙏

I was wondering does it help to keep you asleep, the thing I have is that I can sleep, but tend to get up way too early, maybe 4=5 hrs of deep sleep, I would like to sleep a bit later. But I can handle it as long as I sleep.

 

Begood,

 

It helps me fall asleep. If I need help staying asleep then I use a sleep aid like Unisom or Benedryl.

 

 

ATU 🙏

[[Ca...]]

Hi GG... Good to see u... Hope you are one of the ones that can handle a drop like that, and some can, so dont stress too much just yet...

I/we Just wish you the very best, and look forward to your posts...

stay strong..

 

Heath thanks... I could tell this new Dr likes to talk about his interest/passion, Given the time, and a patient with a broader interest... (than just, I need more drugs...)

-Golly, anyone would think i spent too much time with Drs...!

 

Hey Miyu, if possible, try to hang in there... much info to gain from how fast you return to "base" if u dont updose, but if u need to, its no real biggie...

And like the others have said, if possible, one change at a time..  I have gone in circles from not doing so, and had to trial things again to see... -particularly with Gabapentin as its rather benzo like...

But look after you first...

 

Hi to Everyone, like Tntd, I got a bit behind, so sorry for anything missed...

Maybe its me, but BB seems a bit hectic of late...?

 

[[...]]

Sending everyone love , thinking of you .... Happy for those doing well!  and lots of hugs for those having troubles ...... Hang In there,

MiYu  :hug:

Hang in there MiYu, nothing about benzo's is easy, with some time and no tapering you will become stable enough to restart. I am a believer that the time spent feeling better is a win win, I truly believe that is why I am doing well now. Trust me I know that any time things change, but I would hold again for as long as I could feel able to be functional. I guess being miserable is not an option for me, as I know what hell looks like times 2 and I have no urgent desire to ever go there again. Stay Strong, do not give in to benzo lies that will try to trip you up, you can and will do this your time will come and time goes by faster than you think. :smitten:

 

Thanks Begood , I'm having a really anxious day..... It's not usually one of my main symptoms , but today has been waves upon waves of anxiety, really freaked me out..... I am just going to hold and pray for the best... I also can't go through even this level of hell. I thought going back up to the 8 mgs after my tiny reduction was a good idea, but now I'm wondering if I should just wait it out . It was such a small reduction and I probably should have waited at 8 mgs before reducing any more , I just thought I wouldn't notice a tiny cut like i did , but boy did my body go crazy with this one.....

 

Love, MiYu 

 

[[...]]

 

CT, I'm not sure what I'm doing .....! I just had so much anxiety today I was in a panic to find some relief. Perhaps I'll just relate to the extra GP I took today as a " rescue dose". I've been pretty steady for a while now on 390 mgs gabapentin , so I think I can stick with that. It's the V cuts that get me.

As I said to Begood , I probably should have waited at 8 mgs of V for a bit before trying another tiny cutback......but , tonight I added the 2/30ths of 1/4 mg back in , actually it's a bit less than that. Maybe I'll drop it out  tomorrow ..... As I said ,I've  been a crazy person in panic today and all over the place ! So hard to stay in place when you're in hell......for me anyway.

 

MiYu

 

" Hey Miyu, if possible, try to hang in there... much info to gain from how fast you return to "base" if u dont updose, but if u need to, its no real biggie...

And like the others have said, if possible, one change at a time..  I have gone in circles from not doing so, and had to trial things again to see... -particularly with Gabapentin as its rather benzo like...

But look after you first..."

[[bl...]]

Have you all tried L Theanine? It definitely calms me down. The Mag powder from any compounding pharmacy, mixed with apple cider vinegar, also helps. Worth a try maybe?

Blue

[[...]]

Have you all tried L Theanine? It definitely calms me down. The Mag powder from any compounding pharmacy, mixed with apple cider vinegar, also helps. Worth a try maybe?

Blue

Thanks Blue .... I've been using mag oil at night as I have restless legs , which is why I got on gabapentin some years back . The mag oil does help my legs , and I have also found a both 100 mgs potassium also helps,

MiYu

[[bl...]]

Miyu:

Do u get cramping in feet or have you been spared that hideous s/x? I mix Amish cramp formula, basically apple cider vinegar with lemon and garlic juice, yes--tastes as disgusting as it sounds, with the mag powder before bed and it helps a lot. But great if oil helps. And again, if u haven't tried L Theanine, I find it makes me feel calm and a bit drowsy--maybe something to think about for late night wake up calls.

[[Ca...]]

 

CT, I'm not sure what I'm doing .....! I just had so much anxiety today I was in a panic to find some relief. Perhaps I'll just relate to the extra GP I took today as a " rescue dose". I've been pretty steady for a while now on 390 mgs gabapentin , so I think I can stick with that. It's the V cuts that get me.

As I said to Begood , I probably should have waited at 8 mgs of V for a bit before trying another tiny cutback......but , tonight I added the 2/30ths of 1/4 mg back in , actually it's a bit less than that. Maybe I'll drop it out  tomorrow ..... As I said ,I've  been a crazy person in panic today and all over the place ! So hard to stay in place when you're in hell......for me anyway.

 

MiYu

 

" Hey Miyu, if possible, try to hang in there... much info to gain from how fast you return to "base" if u dont updose, but if u need to, its no real biggie...

And like the others have said, if possible, one change at a time..  I have gone in circles from not doing so, and had to trial things again to see... -particularly with Gabapentin as its rather benzo like...

But look after you first..."

Yes, at this point whatever it takes to get some stability and relief... Tapering isnt meant to be this hard... Its just not productive in the long run...

I wish there was a one rule fits all...

Stay positive, and know its the meds, not you... And time Does heal..

Im crap at maths... -but without stressing about an answer, was your cut about 1% of 8v ?

Dont worry if your not sure...

[[ga...]]

Just a quick hello while I have internet access. Tried to read and catch up and now am dizzy! Wishing everyone well. I think if you often.

 

Gard

[[Ca...]]

Just a quick hello while I have internet access. Tried to read and catch up and now am dizzy! Wishing everyone well. I think if you often.

 

Gard

lol Gard, -I do that... -catch up on reading, then too messed up to post or reply...

Take care, and Be well...