The Long Hold Support Group

[[...]]

Hi guys,

 

I didn't have to read quite as much to catch up today. I think everyone is on here when I'm not, lol.

 

Such wonderful information for Healing. Gard I learned what you are talking about with fighting suffering only increasing suffering in a DBT group. Acceptance too, or radical acceptance. Acceptance is a hard concept and I know I have to recommit to it pretty much everyday. I think what you wrote should be a sticky too. Such wonderful information

 

Healing and Heath we can stink together I have a fear of getting in the shower too. It started with my CT from my AD and has only gotten better when I have been in a window. When I'm at my baseline I do find that I can shower in the evening. Most of my sxs receed in the evening except when I've done too big of a cut then they just go on forever.

 

Speaking of which, I just realized that this really bad wave I've been going through might well be due to the fact that I changed generics. I did taper over to the new generic because I knew it could have a slight difference in dose. The w/d sxs work in perfectly with my taper over and the severity is the same as if I had done a cut. I haven't had sxs this bad since I started getting windows back in June. I thought maybe the generic change, but no, I did a taper over so I should be fine. Then a friend of mine told me that her doctor said that the difference in bioavailability can be 10% so if you happen to go from one that is 10% above norm to one that is 10% below norm it would be a 20% difference. Needless to say this sent me searching the internet for more information and what I found just made me angry.

 

found that a 20% variation is acceptable which is pretty much the same thing my friend said. https://sciencebasedmedicine.org/generic-drugs-are-they-equivalent/

 

However according to another web site an average 3.5% difference was found between brand name and generics. That's the average so it could easily fall in the 10% total bioavailability difference. https://www.fda.gov/drugs/resourcesforyou/consumers/buyingusingmedicinesafely/understandinggenericdrugs/ucm167991.htm

 

I had thought it was less than this and my wave has been worse than previous waves since I started getting windows. It has been more like what has happened previously when I have tapered. If my dose was reduced, via the change of generics, by the average of 3.5% over the course of the month that I changed over it could very well be the cause of this "wave". Even a smaller reduction has caused problems for me in the past. Since I was unaware of this level of difference in generics I believe that the change in the generic has been the cause of my current wave. I know there is no way that I can know that for sure but it does seem quite likely given the reaction I had to the change of my meds and the timing of the wave with the timing of the change of the meds along with how long and strong this wave has been. I think I will discuss this issue with my doctor and see if I can keep the same generic even if the pharmacy chages their supplier again.

 

This is awful, and it actually made me really mad, but I'm glad I know about it now. I hope this information will be helpful for others.

 

So now I feel like I need to start my hold all over again! So very frustrating. At least it explains why my symptoms got so bad and I didn't even get my evening relief which only happens with a cut.

 

Kittybean-- thanks for the encouragement. I have been wondering if a long hold might make tapering easier and I might be able to go faster. The most important thing is to be functional so if I can stay functional, which includes being able to leave the house (and shower first!!) then I don't really care how long it takes to get off these meds. Holding for now so I can reach that place.

 

BP-- I get headaches too. Interestingly enough they are often brough on by changes in weather patterns. Pain meds don't seem to help so I just try to distract.

 

Valley -- thanks for the support and helpful information on when to taper. I'm sorry to hear that you are having to taper your daughter off an AD. That can be just as bad as tapering a benzo. Have you gone to the Surviving Antideprresants forum? They have a lot of great information. Not that you need it since most of it is the same as what we get here It's amazing how these drugs cause the same types of symptoms when you go off of them. I hope your daughter is one that is having an easier time of it. 

 

BeGood -- I love the breathing exercise. I will definitly save it. Thanks.

 

You guys are all so wonderful with the help and the laughter. You make all of this easier to bear. :smitten:  :hug:

 

T

 

 

 

[[Ki...]]

I didnt notice mine was switched from Teva to Mylan until 2 refills later so Im hoping to either save those till the end with an updose or hopfully by then have a new doc to write me a new script cause I have read the same thing too many times. Its very reasonable to think that change was the cause of your problems.

[[be...]]

Hey, has anyone heard from Nova...??

 

Nova, -if quietly reading... Best wishes, Get Well...

and the opposite for HIM upstairs...

 

Stay strong...

Cant Nova was on early this morning 8/07, she has not posted since July 29, sure when she feels better she will post. Also I have looked for the posts on tolerance and wd and I can not seem to find them here on our really long thread, you think it was a couple of weeks ago? I am sure Valley will know.  

[[ly...]]

Hey, has anyone heard from Nova...??

 

Nova, -if quietly reading... Best wishes, Get Well...

and the opposite for HIM upstairs...

 

Stay strong...

Cant Nova was on early this morning 8/07, she has not posted since July 29, sure when she feels better she will post. Also I have looked for the posts on tolerance and wd and I can not seem to find them here on our really long thread, you think it was a couple of weeks ago? I am sure Valley will know.

 

I hope we hear from Nova soon.

 

Colin has a sticky explaining tolerance withdrawal - I believe he calls it "relative withdrawal".  It's a good explanation.

[[Va...]]

Hey, has anyone heard from Nova...??

 

Nova, -if quietly reading... Best wishes, Get Well...

and the opposite for HIM upstairs...

 

Stay strong...

Cant Nova was on early this morning 8/07, she has not posted since July 29, sure when she feels better she will post. Also I have looked for the posts on tolerance and wd and I can not seem to find them here on our really long thread, you think it was a couple of weeks ago? I am sure Valley will know.

 

I hope we hear from Nova soon.

 

Colin has a sticky explaining tolerance withdrawal - I believe he calls it "relative withdrawal".  It's a good explanation.

Hi all! I believe the tolerance discussion began here:

 

http://www.benzobuddies.org/forum/index.php?topic=153201.10520

 

[[ga...]]

Hey, has anyone heard from Nova...??

 

Nova, -if quietly reading... Best wishes, Get Well...

and the opposite for HIM upstairs...

 

Stay strong...

Cant Nova was on early this morning 8/07, she has not posted since July 29, sure when she feels better she will post. Also I have looked for the posts on tolerance and wd and I can not seem to find them here on our really long thread, you think it was a couple of weeks ago? I am sure Valley will know.

 

I hope we hear from Nova soon.

 

Colin has a sticky explaining tolerance withdrawal - I believe he calls it "relative withdrawal".  It's a good explanation.

Hi all! I believe the tolerance discussion began here:

 

http://www.benzobuddies.org/forum/index.php?topic=153201.10520

 

How does Valley keep pulling these rabbits out of hats?

[[Va...]]

Hey, has anyone heard from Nova...??

 

Nova, -if quietly reading... Best wishes, Get Well...

and the opposite for HIM upstairs...

 

Stay strong...

Cant Nova was on early this morning 8/07, she has not posted since July 29, sure when she feels better she will post. Also I have looked for the posts on tolerance and wd and I can not seem to find them here on our really long thread, you think it was a couple of weeks ago? I am sure Valley will know.

 

I hope we hear from Nova soon.

 

Colin has a sticky explaining tolerance withdrawal - I believe he calls it "relative withdrawal".  It's a good explanation.

Hi all! I believe the tolerance discussion began here:

 

http://www.benzobuddies.org/forum/index.php?topic=153201.10520

 

How does Valley keep pulling these rabbits out of hats?

I'm not sure lol.

 

[[...]]

Kittybean,

 

I'm so glad you didn't have any problems when they changed yours. I have heard it depends on the brand, sounds like yours went the right way. The VA covers the brand of the generic with it own instruction label so I don't know what I'm getting. I've tried to peel the label back but it always seems to tear the original label too. I think I'll try again so I know exactly what to tell my pdoc.

 

Valley I love the meme. It made me laugh. You are awesome

 

Hugs,

T

[[bl...]]

tntd: yes, distraction is best. sometime so hard to do when in pain but focusing on it certainly doesn't help. today i exercised despite every better instinct and it helped. that was AFTER i bought a bathing suit...at Target. Kind of a new low.

[[He...]]

Thank you Gard

I am guilty as charged of needing lots and lots of reassurance..... especially when the anxiety is so high and relentless.....and the days are so long.....and my family and friends are stretched beyond their ability to cope with me.  I should just snap out if it.

 

You are experiencing what we all are or have experienced. Family and friends get stretched. Some are not able to cope. We go through periods of needing constant reassurance, but they don't understand because they've never experienced anything like it. W/D is an experience you have to experience to understand. That's why we understand and your doctor and family can't. Just know this is normal. You're not going to snap out of it, so don't scold yourself about that. I know that feeling well. I battled with my symptoms and with myself. I found no relief until I accepted my symptoms. And it was not the kind of relief one would expect. It was just an ability to let the symptoms be there.

 

I heard it explained this way:

 

Primary suffering is the direct experience of painful w/d symptoms that cannot be avoided. Only time will heal our nervous systems.

 

Secondary suffering is what happens when we battle against our pain. It is perfectly natural for our brains to battle against pain and seek to escape it. Our brains our programmed to do that. But in this case, when there is nothing we can actually do but wait, the battle adds to our suffering. The more we focus on the pain, the more our brains alert and alarm, and the more our symptoms are ramped up.

 

The two tools that most people seem to find useful to alleviate secondary suffering are acceptance (stop battling it, just let it be there) and distraction (turning your brain to something else). I believe there's a sticky on this at the top of the withdrawal support board. It's hard. It takes practice. Eventually it becomes easier.

 

That said, we are human and need human contact and encouragement. Isolation causes stress for anybody in any situation. So don't isolate. Come here and ask for encouragement as much as you need to. We're all in this together.

 

Gard 

 

 

Gard's post here is gold. Especially the "Secondary suffering" part. This post should be a sticky.  Seriously.

 

Well done Gard!

 

Great post Gard! :thumbsup:

[[Le...]]

Kittybean,

 

I'm so glad you didn't have any problems when they changed yours. I have heard it depends on the brand, sounds like yours went the right way. The VA covers the brand of the generic with it own instruction label so I don't know what I'm getting. I've tried to peel the label back but it always seems to tear the original label too. I think I'll try again so I know exactly what to tell my pdoc.

 

Valley I love the meme. It made me laugh. You are awesome

 

Hugs,

T

T, you should be able to identify your generic using this site.

 

https://www.drugs.com/imprints.php

 

[[bo...]]

Thank you Gard

I am guilty as charged of needing lots and lots of reassurance..... especially when the anxiety is so high and relentless.....and the days are so long.....and my family and friends are stretched beyond their ability to cope with me.  I should just snap out if it.

 

You are experiencing what we all are or have experienced. Family and friends get stretched. Some are not able to cope. We go through periods of needing constant reassurance, but they don't understand because they've never experienced anything like it. W/D is an experience you have to experience to understand. That's why we understand and your doctor and family can't. Just know this is normal. You're not going to snap out of it, so don't scold yourself about that. I know that feeling well. I battled with my symptoms and with myself. I found no relief until I accepted my symptoms. And it was not the kind of relief one would expect. It was just an ability to let the symptoms be there.

 

I heard it explained this way:

 

Primary suffering is the direct experience of painful w/d symptoms that cannot be avoided. Only time will heal our nervous systems.

 

Secondary suffering is what happens when we battle against our pain. It is perfectly natural for our brains to battle against pain and seek to escape it. Our brains our programmed to do that. But in this case, when there is nothing we can actually do but wait, the battle adds to our suffering. The more we focus on the pain, the more our brains alert and alarm, and the more our symptoms are ramped up.

 

The two tools that most people seem to find useful to alleviate secondary suffering are acceptance (stop battling it, just let it be there) and distraction (turning your brain to something else). I believe there's a sticky on this at the top of the withdrawal support board. It's hard. It takes practice. Eventually it becomes easier.

 

That said, we are human and need human contact and encouragement. Isolation causes stress for anybody in any situation. So don't isolate. Come here and ask for encouragement as much as you need to. We're all in this together.

 

Gard 

 

 

 

 

 

Gard .. that's an amazing post .. so reassuring for Healing. I think we all talk about acceptance to her , but I know that's easier said than done. We come to it in our own time. That primary an secondary suffering is so very very true. It was taught to me called first and second arrows .. it's so true as well ..

Hope your day/night has improved ... BB

[[Ca...]]

Hey, has anyone heard from Nova...??

 

Nova, -if quietly reading... Best wishes, Get Well...

and the opposite for HIM upstairs...

 

Stay strong...

Cant Nova was on early this morning 8/07, she has not posted since July 29, sure when she feels better she will post. Also I have looked for the posts on tolerance and wd and I can not seem to find them here on our really long thread, you think it was a couple of weeks ago? I am sure Valley will know.

 

I hope we hear from Nova soon.

 

Colin has a sticky explaining tolerance withdrawal - I believe he calls it "relative withdrawal".  It's a good explanation.

Hi all! I believe the tolerance discussion began here:

 

http://www.benzobuddies.org/forum/index.php?topic=153201.10520

 

How does Valley keep pulling these rabbits out of hats?

sorry..  put that rabbit back in de hat...

It was PAGE 1008 +a few...

I just thought the wording was priceless, and not a hint of an argument... (as expected for this thread)

Healing... enjoy...

 

http://www.benzobuddies.org/forum/index.php?topic=153201.msg2437635#msg2437635

 

Did I get the link right??

 

[[Ca...]]

Tntd,

For your records... I have also had trouble changing brands...

 

I also think stable tapering to be much faster and easier... Holds being a good investment in time...

-obviously my experience was with another med... But the theory holds true...

 

My best...

[[Ca...]]

Hey, has anyone heard from Nova...??

 

Nova, -if quietly reading... Best wishes, Get Well...

and the opposite for HIM upstairs...

 

Stay strong...

Cant Nova was on early this morning 8/07, she has not posted since July 29, sure when she feels better she will post. Also I have looked for the posts on tolerance and wd and I can not seem to find them here on our really long thread, you think it was a couple of weeks ago? I am sure Valley will know.

Thanks BG... Always the mermaid (angel)...  sorry, my times were out a bit... How time flies...

 

[[Ca...]]

Hey, has anyone heard from Nova...??

 

Nova, -if quietly reading... Best wishes, Get Well...

and the opposite for HIM upstairs...

 

Stay strong...

Cant Nova was on early this morning 8/07, she has not posted since July 29, sure when she feels better she will post. Also I have looked for the posts on tolerance and wd and I can not seem to find them here on our really long thread, you think it was a couple of weeks ago? I am sure Valley will know.

 

I hope we hear from Nova soon.

 

Colin has a sticky explaining tolerance withdrawal - I believe he calls it "relative withdrawal".  It's a good explanation.

Correct, but its not quite as entertaining..  -It doesnt have Valleys Revised Tapering Tolerance...

-or the baby screaming for candy theory..!!

 

I remember thinking I should memorise the page (1008)...

 

Thanks...

[[be...]]

Hey, has anyone heard from Nova...??

 

Nova, -if quietly reading... Best wishes, Get Well...

and the opposite for HIM upstairs...

 

Stay strong...

Cant Nova was on early this morning 8/07, she has not posted since July 29, sure when she feels better she will post. Also I have looked for the posts on tolerance and wd and I can not seem to find them here on our really long thread, you think it was a couple of weeks ago? I am sure Valley will know.

Thanks BG... Always the mermaid (angel)...  sorry, my times were out a bit... How time flies...

You are welcome "Captain" 

[[be...]]

Slowly, missed you yesterday, love reading your Posts, hope all is well with you. I am not sure when you said you would start your Vacation, but I do remember you said you would not be posting much then. Thinking of you.

[[sl...]]

hi begood

I fly to Scotland tomorrow but have been finishing some work plus trying to pack 

Freezing Scotland, they are having evening frost already  plus my sis in law says to take my hiking boots ...eeek!

Must have something planned for the day after the wedding.

To London next, where although weather isn't great it's much warmer and we are promised warmth for early Sept so I'm  :crazy: wondering what to take.

 

Anyway ...hope everyone is well and hope Healing feels better.

I feel so sorry that she is having a bad time but Gard's advice is great.

 

[[ly...]]

 

 

Hey slowly!  Have the best time!

[[sl...]]

Tntd,

For your records... I have also had trouble changing brands...

 

I also think stable tapering to be much faster and easier... Holds being a good investment in time...

-obviously my experience was with another med... But the theory holds true...

 

My best...

I have as well, Cant.

I had to insist that my pharmacy stopped sending cheaper brands but luckily so did other patients, it applies to meds for other conditions too.

Now that I have no more scripts it's easier cos I have to get them from an overseas source where they ask me which brand I want.

They are varying in strength  Tntd, don't let anyone tell you differently, or at least some don't seem to work as well as others and  can cause problems if you are tapering.

I've heard our pharmacist grumbling behind the screen that I'm just neurotic [ok fair point ]  because they are all the same, but presumably she hasn't sampled them.

Hope you are well Cant 

[[sl...]]

 

 

Hey slowly!  Have the best time!

Thank you Lynn 

Are you still feelng good?

[[ly...]]

 

 

Hey slowly!  Have the best time!

Thank you Lynn 

Are you still feelng good?

 

I had some slight ramping late yesterday but I am under a tremendous amount of stress with a family situation and I somewhat ascribe it to that.  I think it most likely the simple coming and going of this process.  I am happy to report that things were relatively mild and have vanished this morning.  I think it important for all of us to accept the comings and goings and not let our minds cause any escalation.

[[sl...]]

The shower thing is because of dizziness, boatyness and getting over a bout of vertigo recently.

 

The thing is everyone seems so cheerful and together on this site.  People talked about how scary the withdrawal board was.....when I post on the withdrawal board I don't get answers to my questions....I came here and it felt like home.  I guess I'm afraid to have the welcome mat taken away with my misery......because right now I'm neither cheerful or together.  Just afraid of doing the wrong thing.

 

Mostly because I'm not use to the long hold theory....and I understand the idea behind it.

BUT if I wasn't getting the therapeutic dose on 4.5 mg of Ativan before my taper ( tolerance) and now I'm at 3 mg of Ativan.....how will my body feel better holding....I wrestle with this....my therapist tells me that my anxiety increases when I'm at a cross roads .  I guess I just need more reassurance

Thank you all .....you are very very kind to me.  Just mixed up

 

I really believe that if you do an extended hold, you will slowly notice yourself getting better. As you get better, you will gain confidence. With confidence, you will find yourself able to accept the pain because you will at some point realize that in the end, you will completely normalize. It is just matter of time. And yes, it does seem like a long time, especially when you are getting blasted with sxs all the time.

 

Hang in there!

 

:clap:

Seems to be working for me.

Nobody can deny that it's difficult and it sometimes feels like it's going to last for ever but I think confidence is the key.

Can't say I feel confident all the time but I'm working on it...and I'm very keen on  distraction, it makes me feel much better.

[[sl...]]

 

 

Hey slowly!  Have the best time!

Thank you Lynn 

Are you still feelng good?

 

I had some slight ramping late yesterday but I am under a tremendous amount of stress with a family situation and I somewhat ascribe it to that.  I think it most likely the simple coming and going of this process.  I am happy to report that things were relatively mild and have vanished this morning.  I think it important for all of us to accept the comings and goings and not let our minds cause any escalation.

 

Yes I agree.

Take care while I'm away.

Good luck