The Long Hold Support Group

[[...]]

HI all, I'm glad most of you are doing well and sounds like the holidays were for the most part good!

I had an ok day on the 25th , by my standards anyway , but nothing like what I'd like. Still so fragile and hypersensitive and burning .

 

I'm feeling a bit sorry for myself after reading all your posts, you're all doing so well, moving along with your tapers and I'm stuck , and aLthough I have some better days , again by my standards , I am still housebound for the most part and feeling depressed with my lack of progress . I don't suppose I would care too much if I felt better .

 

I must confess I tried a little micro taper just to see what would happen , couldn't help myself 

I didn't get very far, about 1/16th mg , and no go. Ugh....

Feeling hopeless as I just want to feel better and even a ' good' day for me is so very limited. I think what's so disheartening is that I started at 10 mg in June and by August was a mess..... 7 months and only 1-3/4 mg + down.

 

Trying to accept but not having any kind of a life is pretty miserable .

Sorry for the downer post 

MiYu

 

[[Va...]]

HI all, I'm glad most of you are doing well and sounds like the holidays were for the most part good!

I had an ok day on the 25th , by my standards anyway , but nothing like what I'd like. Still so fragile and hypersensitive and burning .

 

I'm feeling a bit sorry for myself after reading all your posts, you're all doing so well, moving along with your tapers and I'm stuck , and aLthough I have some better days , again by my standards , I am still housebound for the most part and feeling depressed with my lack of progress . I don't suppose I would care too much if I felt better .

 

I must confess I tried a little micro taper just to see what would happen , couldn't help myself 

I didn't get very far, about 1/16th mg , and no go. Ugh....

Feeling hopeless as I just want to feel better and even a ' good' day for me is so very limited. I think what's so disheartening is that I started at 10 mg in June and by August was a mess..... 7 months and only 1-3/4 mg + down.

 

Trying to accept but not having any kind of a life is pretty miserable .

Sorry for the downer post 

MiYu

Hi MiYu. Sorry you're having it rough. I understand the mindset of not making progress but you you have to make a mental shift and tell yourself that the hold "is" making progress. It's allowing your body to adjust and heal so that you will feel better and be able to taper from a solid foundation. I remember the depression I had throughout my long hold but once I stabilized and began to taper at a slow rate, I started to feel better as I reduced. Give it some time and you'll get where you want to be. Time passes quickly. It was over a year ago I started to taper and I realise the time passes whether I'm reducing or holding but it's being able to function and live life that's important.  --V

[[He...]]

Hi MIYU,

V is right. Even if you are holding and not cutting at this time, you are still making progress because you are giving your CNS the time it needs to heal and catch up. And that is exactly what it is doing. I guess you will see that, once your sxs begin to diminish. I felt the same way the first time I did a hold. But eventually, when my windows began to come, I realized that the hold was working.

I am sorry thst you are housebound. Can you rent movies or download some games on an iPad or computer? That helps me pass the time when I'm not feeling well and need to be at home.

I Hope the burning will subside soon and you will find some peace. You haven't been on the forum for a while. Maybe posting and letting us know what's going on a bit more often will help you pass the time too.

I'm Thinking about you a lot and hoping for a turn around day for you real soon .

 

Heath

[[be...]]

HI all, I'm glad most of you are doing well and sounds like the holidays were for the most part good!

I had an ok day on the 25th , by my standards anyway , but nothing like what I'd like. Still so fragile and hypersensitive and burning .

 

I'm feeling a bit sorry for myself after reading all your posts, you're all doing so well, moving along with your tapers and I'm stuck , and aLthough I have some better days , again by my standards , I am still housebound for the most part and feeling depressed with my lack of progress . I don't suppose I would care too much if I felt better .

 

I must confess I tried a little micro taper just to see what would happen , couldn't help myself 

I didn't get very far, about 1/16th mg , and no go. Ugh....

Feeling hopeless as I just want to feel better and even a ' good' day for me is so very limited. I think what's so disheartening is that I started at 10 mg in June and by August was a mess..... 7 months and only 1-3/4 mg + down.

 

Trying to accept but not having any kind of a life is pretty miserable .

Sorry for the downer post 

MiYu

Sorry MiYu, that you are having a bad time, try to distract with funny Movies, anything to take away the feelings of depression, seems to me that depression slows down everything in our Brain, because of the chemical changes that occur with depression, this is not a for sure fact, but if exercise and doing fun things make our Brains happy and we feel good, I am just thinking it can affect your mood more, we are here for you. . Getting off of Benzo's in a way that we can remain functional takes "Time", anyway it has for me.

[[ly...]]

 

 

Hi MiYu,

 

I'll just chime in to say that I agree with the rest.  It takes time.  Sometimes alot of time is needed for our brains to heal.  This is not wasted time.  I held 8 months last year.  After a while I forgot about the taper.  I just put the whole thing on hold (no pun!).  I stopped thinking about it or pressuring myself.  I was not in a place where I could taper further so I took a break, an extended break.  I just thought of it as something I needed to do as a part of this process.  It took a long while before things started to get better. 

[[Ex...]]

My symptoms flare up during every period, but this month has been the worst. Did anyone else notice horrible flare ups around your period during your 5th or 6th month?

[[...]]

You are all so sweet and supportive, thank you for being here for me.

I guess because I haven't felt like I was making progress I haven't wanted to keep posting the same old same old.... Which it is at the moment , like Groundhog Day ....

I do have a routine where I watch movies most afternoons , I try to take  a little walk but sometimes it revs up my symptoms.

I am depressed for sure, I have a few tools I'm trying. , a ' blue lamp' that's for seasonal depressive disorder, and I try to distract as much as I can.

I'm in that ' it'll never end' mindset for sure....... Feel damned if I do and damned if I don't kind of thing.

Posting here does help me feel better, your support really helps thank you. So if it's ok with you all that my posts are likely going to be of the same nature , perhaps for a while, then I will keep posting .

I need to feel connected to others that have been / are going through this.

 

Love, MiYu 

[[ba...]]

Want to chime in, as I am also doing a long hold. Have felt micro progress, it is frustrating. At 3.5 months I still don't get windows, and have a lot of sxs. However, my family and therapist have both told me I am much more stable emotionally, better at dealing with the waves, and overall, calmer. they see an improvement, so that's good to hear.

 

This Winter has been one of the most stressful I have ever had. My husband totaled both our cars in a 4 day period. That put us out over $3000 dollars at the beginning of December. I am the one that deals with all the "stuff," so have been handling that. Our back porch fell off, and cold air seeped under the house and froze the pipes. (I live high in the Mountains of Colorado, 10 degrees is our normal daily high) I had to have minor surgery 2 days ago. It just never ends. There has been more, but that's what my life has been for a few months, one disaster after another.  Plus, our world stage upsets me greatly, Aleppo, so many environmental disasters, our own national situation with violence and hatred.

 

These events prompted extreme stress "episodes" that lasted a couple of days each. Not a time to be tapering.

 

On a positive note, I did start tapering the seroquel, my other med besides xanax a week ago, and it's going fine, no huge amp. It's not as addictive, but I hate the side effects and want to get off of it.

 

Another positive, I recently discovered about 2 times a week I am able to skip a dose. I guess that is tapering, but it feels more like I don't need it, and I don't want it. I don't get much of a wave from doing it.

 

I hate how long this takes, and I get so discouraged that I still feel like I am in constant wd to some extent or another. However, if I cut (besides the days I skip) I know I would be plunged into much harder wd, and be a crazed tormented woman like I was at the beginning of this hold.

 

I will hold until I start getting windows: that is what I am waiting for. To feel normal some of the time, to not always feel like I have to distract myself to cope.

 

It is what it is, and it takes what it takes.

 

Hope 2017 is a good year for us, both personally and on the world stage. 2016 has been horrible.

[[fr...]]

  MiYu,  Just wanted to lend a shoulder as I am in the same boat.  I have been holding again and it is getting worse for me.  I don't post much either here because I can offer no hope to others that it is getting better so I don't want to bring anyone down or scare them.  I am so happy it is working for most so maybe there is still some hope for you and me.  All we can do is try.  Hoping you feel better soon.

[[Va...]]

Hope all of you holding and still struggling will start feeling relief. Sometimes it's hard to notice when you've felt miserable for a long time but the improvements are very subtle and other people notice as baddove stated. We'll all be able to celebrate some day when we can walk off and be completely healed.  --V

[[ga...]]

Yes, Groundhog Day! It is like that all over the forum. Waves and windows. Waves and waves. Tiny hopes pop up and are dashed. But, finally after 6 months, I saw that I was really getting more windows and symptoms I could cope with. Not all days, but more days than not. Then I threw in a partial taper of my Seroquel and got knocked right over again. Up-dosed a bit. Now I'm stable again (able to take care of myself most days and gaining some function back, too, that I thought was gone for good). When I get discouraged, I remind myself of where I was at the beginning of 2016. When I get impatient, I remind myself of where I was at the beginning of 2016! I am determined I will never be there again no matter how long this takes.

 

Even my primary doctor who is benzo-clueless told me to hold and take exactly the same dose of each med at exactly the same time until I felt better rather than try to rush off. She said, "The brain likes stability." She was right. In my case, the 6 months of stability for my brain gave it the ability to adjust and made a huge difference in my functioning. (That and incorporating mindfulness into my life to counter-act the new fears I learned in w/d.)

 

I also like to read the success stories, but haven't done that in awhile. I've lost track of some of my favorites, unfortunately. I should have bookmarked them. If anyone knows some good ones, please share!

 

Wishing us all hope for many window-ful days in the new year.

 

Gard

[[be...]]

To those who are struggling, hang on and time goes faster than you think, know that you are not alone, and please do not stay away from this thread, no one here ever gets tired of anything that is said, hey we are all in this for the long haul, your time will come, and you will be giving words of comfort and support to others. Just don't ever give up, Hope is something even us Vets hold on to, a New Year is starting and each one of us will have something we will go through, but please know you do not have to do it alone. I am so pleased that some that have been holding have seen a bit of a change, and it is good that others have noticed that baddove is better.

[[Al...]]

Begood,

 

Well said, we need each other going through this. Even those of us who are not particularely suffering now can quickly exibit sxs tomorrow. We help each other stsy calm and to understand what why these things ate happening.

 

Happy New Year to all 

 

ATU

[[be...]]

Begood,

 

Well said, we need each other going through this. Even those of us who are not particularely suffering now can quickly exibit sxs tomorrow. We help each other stsy calm and to understand what why these things ate happening.

 

Happy New Year to all 

 

ATU

Thanks, Happy New Year to you also.

[[pe...]]

Hi Everyone,

 

I want to thank everyone here for the wonderful support.  My husband is now recovering at home.  I am thankful for that. 

 

I hope everyone is doing well.

 

Love and Hugs,

 

Anne 

So good to hear Anne! How are you are holding up?

 

Best wishes to your husband for a quick recovery!

 

Hi Valley,

 

Thanks.  I am doing okay.  I have constant symptoms, but I suppose that is normal when going through a stressful event.

 

I hope you are doing well.  I remember you saying you were experiencing some anxiety.  I hope that is now better.

Thank you for the get well wishes.

 

Anne 

 

How you tapering anne?

[[ga...]]

Hi Everyone,

 

I want to thank everyone here for the wonderful support.  My husband is now recovering at home.  I am thankful for that. 

 

I hope everyone is doing well.

 

Love and Hugs,

 

Anne 

So good to hear Anne! How are you are holding up?

 

Best wishes to your husband for a quick recovery!

 

Hi Valley,

 

Thanks.  I am doing okay.  I have constant symptoms, but I suppose that is normal when going through a stressful event.

 

I hope you are doing well.  I remember you saying you were experiencing some anxiety.  I hope that is now better.

Thank you for the get well wishes.

 

Anne 

 

How you tapering anne?

 

Pete, Anne is still busy taking care of her husband. She hasn't been on in awhile. She messaged me very briefly recently and promised to message again when she had a chance.

 

Gard

[[He...]]

To Freeme, Miyu, and all who are struggling.

Please don't hesitate to post,even if you are feeling awful. You are not going to scare us. We have all been in your shoes at one time or another and chances  are, we may be there again. Who knows with these benzos! . Please know that we are here for you and we want to help you as much as we possibly can. We don't care if you post that you are still suffering, although we wish you weren't suffering!  But keep posting so we can give you whatever support we are able to. That's what we are here for.

 

This forum is here to celebrate the good times AND to commiserate and give support during the bad times.

I hope you will have some good Windows really soon!

 

Heath

[[no...]]

Aloha everyone  since my updose from 3.34 to 5mg Diazepam due to suffering from physically and mentally  crippling symptoms that got unbearable over two years,  and down right a matter of surviving or not in the end.  It will be week six of my hold tomorrow , some times are better than others symptom wise. Most days I'm able to do what I need, and not so much what  want but 6 weeks is early days when you holding for severe symptoms. So I'm continuing to hold for how ever long it takes until I'm able to get a break enjoy it for a bit then resume tapering from a more positive stance, I wish healing and stability for all who are suffering and waiting for the change to come. 

 

 

 

Love Nova xxx  :smitten:

[[be...]]

Aloha everyone  since my updose from 3.34 to 5mg Diazepam due to suffering from physically and mentally  crippling symptoms that got unbearable over two years,  and down right a matter of surviving or not in the end.  It will be week six of my hold tomorrow , some times are better than others symptom wise. Most days I'm able to do what I need, and not so much what  want but 6 weeks is early days when you holding for severe symptoms. So I'm continuing to hold for how ever long it takes until I'm able to get a break enjoy it for a bit then resume tapering from a more positive stance, I wish healing and stability for all who are suffering and waiting for the change to come. 

 

 

 

Love Nova xxx  :smitten:

"Sista" that is a good plan, and I have no doubt that your holding will allow you to have relief and stability. :smitten:

[[fr...]]

  Thank you all so much for the support, it means the world to me.  Bless you all. 

[[be...]]

Valley, I decided that I will just make my solution every two days, as I have 2 jars, one to hold solution, and one to drink from, so I am using the 2mg and 4cc of Vodka with 200cc for now, until I start my taper again. It is pretty clear but it looks like there is something on the bottom, and if I shake they swirl around, so do I just pull out dose from top and not worry about it, as you can see I am worried a bit, since this is my first day doing this, but I was losing too much of the pill trying to cut in half. Thanks for your time and support here.

[[Be...]]

Yes. And was diagnosed with endometreosis. Mad perfect sense to me given my history. But flares seem common enough with periods and muscle pain about five months out.

[[Va...]]

Valley, I decided that I will just make my solution every two days, as I have 2 jars, one to hold solution, and one to drink from, so I am using the 2mg and 4cc of Vodka with 200cc for now, until I start my taper again. It is pretty clear but it looks like there is something on the bottom, and if I shake they swirl around, so do I just pull out dose from top and not worry about it, as you can see I am worried a bit, since this is my first day doing this, but I was losing too much of the pill trying to cut in half. Thanks for your time and support here.

Hi BG. Whatever is easiest for you is fine. I also have a bunch of particles that stay at the botttom of the jar. Those are just the fillers and binders which don't dissolve. The drug will dissolve into a solution so try not to worry to much over it. I usually gently stir mine before dosing just for my own piece of mind even though I know it's not necessary.  --V

[[ga...]]

Valley, I decided that I will just make my solution every two days, as I have 2 jars, one to hold solution, and one to drink from, so I am using the 2mg and 4cc of Vodka with 200cc for now, until I start my taper again. It is pretty clear but it looks like there is something on the bottom, and if I shake they swirl around, so do I just pull out dose from top and not worry about it, as you can see I am worried a bit, since this is my first day doing this, but I was losing too much of the pill trying to cut in half. Thanks for your time and support here.

Hi BG. Whatever is easiest for you is fine. I also have a bunch of particles that stay at the botttom of the jar. Those are just the fillers and binders which don't dissolve. The drug will dissolve into a solution so try not to worry to much over it. I usually gently stir mine before dosing just for my own piece of mind even though I know it's not necessary.  --V

 

:thumbsup:

[[be...]]

Valley, I decided that I will just make my solution every two days, as I have 2 jars, one to hold solution, and one to drink from, so I am using the 2mg and 4cc of Vodka with 200cc for now, until I start my taper again. It is pretty clear but it looks like there is something on the bottom, and if I shake they swirl around, so do I just pull out dose from top and not worry about it, as you can see I am worried a bit, since this is my first day doing this, but I was losing too much of the pill trying to cut in half. Thanks for your time and support here.

Hi BG. Whatever is easiest for you is fine. I also have a bunch of particles that stay at the botttom of the jar. Those are just the fillers and binders which don't dissolve. The drug will dissolve into a solution so try not to worry to much over it. I usually gently stir mine before dosing just for my own piece of mind even though I know it's not necessary.  --V

OK, it went well, I will start looking for a larger glass jar, the only thing is the taste, can I drink after the dose something good tasting?, I am not worried just a bit OCD , just want to do it right, and the container is clearer than my other one, so this is a step up for me.