The Long Hold Support Group

[[Ma...]]

Meems and seasalt, we have all tried so hard and been through so much.  This has truly been the hardest thing ,  thank goodness for bb and all our friends we have gathered a long the way.  :smitten: 

[[Me...]]

Meems- I am so very sorry for you and your sister/family.  I couldn’t imagine…I’m sitting here with tears down my face.  I have a sister and just couldn’t imagine.  Big ((( hugs))).  You are very strong!  Tapering and taking care of your mother too.  I was my mother’s care giver, and my grandparents too.  It’s a tough job.  I think holding is the right thing at the right time for you too.

 

I have heard lots of people that aren’t tapering get hit hard with the 2nd vaccine, while others don’t.  So hopefully it will pass very soon and you will be feeling better any day 

 

Marie

 

thank you Marie.  Yes, its all hard.  The caregiver job is very tough too. 

 

ya I know people who aren't tapering get hit with the 2nd vaccine and some don't.  my thing was that i was good for about 30 hours and then 48 hours after was when I got hit hard.  And then i went into how I think when I go into a wave, it was like, "oh this is going to last forever" blah blah blah.  And its two totally separate things.  but I starting to feel better from the side effects.  I am going to go back to bed after I finish this post.

 

thank you. 

Love,

Meems

[[Ma...]]

Meems,

I agree with Mary.  Tapering is difficult enough when our lives are stable and going well.  You have so much going on, a hold is best under the circumstances.  You are so very close to 4 mg now, that I feel sure you will reach it.  After a long hold I was able to taper faster for a time.

 

We have to work with what life is, not what we wish it would be.  I'm very sorry to hear about your sister.  Take care of yourself during this time.  Ginger

 

GM, I keep meaning to let you know how good it is to see you posting.  You are so supportive and we have missed you.  I hope you feel better each day.    :smitten: ♥️🙋🏼

[[Ca...]]

Hi Dear friends.

 

Coming here to vent a bit...it is a bit tough for me my situation . I feel like a failure.

 

I was making progress trying stabilizing , but my issue is that I starting to fear more and more not sleeping at night because when I don’t sleep or only a couple of hours , the next day I feel in such an agony , I can’t even describe , i don’t care the lack of sleep it just this feeling of impending doom , and suffering mentally and inside my body. Don’t know if it is inner akathisia ? I see nobody with such bad symptoms.

 

When I sleep I was doing ok.

 

I had more and more bad nights starting to exhaust myself after all those weeks of fight. Losing weight.

 

I was so tired and scared of my state I ask my psychiatrist some help and just ended to a clinic ( inpatient I think you call here but more like a fancy one). First night here it is 11pm

 

So weird to end up here at 33 , because of a stupid benzo. I’m so sad because I don’t see a lot of people as bad as me to look for help. I’m worried I’m not strong enough

 

Also I started a cross over to a long life benzo prazepam 2 weeks ago so maybe it is not helping . I decided to go back to my starting dose equivalence. I’m sad all this suffering for nothing

 

Im not going to take lot of meds here , they gave me melatonin to sleep tonight .

 

And I will try an AD to help me with my anxiety ( I had prior to WD)and trauma about the withdrawal... I hope it won’t make me worst .

 

Because as if it is not enough , today I learned on the French forum that a woman killed herself after struggling and being so much in pain for 3 years .

She tried a lot of ADs and crossovers and it made her worst or she was really sensitive I don’t know...

 

It triggers me so much because I feel that I’m weaker than all of you here or more damaged to be inpatient. Also scared to try an AD that could make me worst of help...

 

I don’t want to end up like this woman but hard to not think so when we are in this WD ordeal.

 

What are your thoughts about all that ...

 

 

 

I want to add I regret to have follow the advises to not go back to my previous dose when I crashed and first came to BB and explain my case , saying I will stabilize at one point ( a 50% cut in 5 weeks )

Well I won’t have suffer and messed up with my recovery I think if I would have updose after one week.

 

 

<3

 

 

 

[[Ma...]]

Hi Dear friends.

 

Coming here to vent a bit...it is a bit tough for me my situation . I feel like a failure.

 

I was making progress trying stabilizing , but my issue is that I starting to fear more and more not sleeping at night because when I don’t sleep or only a couple of hours , the next day I feel in such an agony , I can’t even describe , i don’t care the lack of sleep it just this feeling of impending doom , and suffering mentally and inside my body. Don’t know if it is inner akathisia ? I see nobody with such bad symptoms.

 

When I sleep I was doing ok.

 

I had more and more bad nights starting to exhaust myself after all those weeks of fight. Losing weight.

 

I was so tired and scared of my state I ask my psychiatrist some help and just ended to a clinic ( inpatient I think you call here but more like a fancy one). First night here it is 11pm

 

So weird to end up here at 33 , because of a stupid benzo. I’m so sad because I don’t see a lot of people as bad as me to look for help. I’m worried I’m not strong enough

 

Also I started a cross over to a long life benzo prazepam 2 weeks ago so maybe it is not helping . I decided to go back to my starting dose equivalence. I’m sad all this suffering for nothing

 

Im not going to take lot of meds here , they gave me melatonin to sleep tonight .

 

And I will try an AD to help me with my anxiety ( I had prior to WD)and trauma about the withdrawal... I hope it won’t make me worst .

 

Because as if it is not enough , today I learned on the French forum that a woman killed herself after struggling and being so much in pain for 3 years .

She tried a lot of ADs and crossovers and it made her worst or she was really sensitive I don’t know...

 

It triggers me so much because I feel that I’m weaker than all of you here or more damaged to be inpatient. Also scared to try an AD that could make me worst of help...

 

I don’t want to end up like this woman but hard to not think so when we are in this WD ordeal.

 

What are your thoughts about all that ...

 

 

 

I want to add I regret to have follow the advises to not go back to my previous dose when I crashed and first came to BB and explain my case , saying I will stabilize at one point ( a 50% cut in 5 weeks )

Well I won’t have suffer and messed up with my recovery I think if I would have updose after one week.

 

 

<3

 

Carla, I am so sorry.  No judgement here, really.  You are as strong as we are.  We have all done things that set us back, had to hold, or updose.  Truly, you will get through this.  I know several people that started ads and it helped them taper.  Don't let them take total control if what you feel they are doing is a bad choice.  Come here, talk to us and we will do everything we can to support you.  You will not end up like the lady in France, that's the benzo talking.  I have been doing this over 4 years and I have had some really bad times, you take it an hour, a day at a time.  We will pull you through.  Hang tight Carla and keep us posted.  Mary 

[[Ca...]]

Thank you Mary for your support as always .

 

It means a lot to me.

 

I don’t know why I haven’t been able to handle the suffering a bit more... maybe my anxious mind made it worst...

 

Hugs

[[Au...]]

Carla,

Sometimes you just have to do what feels right and safe at the time. If you are an involuntary patient then you have the right to say no to everything! If you’re going to try an AD ask them if you can try at a lower dose. They may roll their eyes but in the end it’s your body and brain and not theirs. Maybe discuss it with the psychiatrist and say you want to trial a low dose first because the nurses don’t have a say and when it’s time to take your meds they will just give you what’s written on your chart.

 

And just remember... you can leave whenever you want to.

 

Believe me, you are not alone.

I hope you manage to get some sleep tonight.

 

Sofia

 

[[Ca...]]

Thank you Sofia,

 

Yes i will try the lowest dose but i dis i could try even lower...I’m scared to be worst but I have to try something for my mental anxiety ...

 

I saw you tried a lot of stuffs to feel better and it made you feel worst ?

 

 

Did this situation happened to you or anyone else here ?

 

Carla

[[Au...]]

My experience will be very different to yours. You mentioned you did well on AD before the benzo? I really hope it works for you. Unlike you I’ve never had success with AD. I have tried AD’s, natural supplements and attempted to cross over to Valium. You need to think of yourself and what’s best for you. It’s hard to know how we react to new meds but you can always start on a low dose and you have the right to stop the tablet if it’s not working for you.

My advice would be try one thing at a time so you know what is working and not working. You are still in control of your life, your decisions. I don’t know about the clinic you’re at but my experience is that they can supply a psychologist and provide group daily CBT sessions on managing anxiety, depression.

Utilise these resources and eat all the food you can to get strong, snack and ask for supplement drinks if you feel you’ve lost too much weight and you’re not allergic. If you have food sensitivities, let them know, they should cater to your needs.

 

Make sure you let people visit you and if allowed advocate for you. If you can schedule your psychiatrist appointments so that you can bring someone with you. It helped me having a friend knowing what the plan was...

 

Stay strong Carla. Please keep in touch.

 

[[Tr...]]

Hey LHSG!

It's been awhile since I posted here. Life really has a way of getting in the WAY! I've been so busy with my little grandson. I babysit him everyday 5 days a week 10/11 hrs a day! I'm exhausted by the time he goes home. Weekends are for catching up on housework and going to the other grandchildren's sports events. I'm 58 yrs old and feel 98 these days🥱🥱🥱

 

I am making another cut tomorrow! I will be at .75 of my xanax when I do! I will be at this for a couple more years or so. Wish me luck my people!! 🙏🤞

 

Anyway, I want to encourage people here who think that their hold isn't working by sharing a little of my own experience. So when I first started tapering I was in very bad shape! My former Dr who decided he would just rip me off of 2 mgs of xanax in a matter of weeks almost damn near killed me! He wanted me to reduce by .5 every two weeks until finished!! You probably can't name a sx I didn't have. I was never so sick in all my life. So with the help of my dil who worked for a Dr she was able to get that Dr to take me on and let me lead my own taper. It was blessing from above! However, I remained very ill for about 3 or so months while I just held my then dose. My new Dr allowed me to just sit on my current dose until I felt well enough to taper again which I did after a 6 month hold. He actually would have just maintained me if that's what I wanted. So here's a list of some sxs I had for those 3 or so months on a hold.

Loss of appetite to almost looking anorexic from not eating.

Inner vibrations that were absolute HELL!

insomnia for weeks on end.

Heart palpitations galore and I had to wear a heart monitor for two weeks and would wear one a few more times during my taper.

Muscle twitches/jerks. Involuntary limb movements.

Chills and tingling sensations up and down my body.

Hot/cold sweating.

I developed dysautonomia aka POTS for POSTURAL ORTHOSTATIC TACHYCARDIA for which there is no cure. Let me note here that there are many who develop this during a taper and it goes away after you finish the taper and heal. So I'm hopeful. I also could have developed it from a virus or severe stress in which case it will be with me for life.

Mental sxs were numerous too! I'll list what I can remember.

Crushing depression of which I had never known before.

Mood swings.

Crying all the time.

Feeling like I wasn't attached to my body.

Feeling like I didn't belong on the planet!! Like I was a stranger to it! Feeling displaced. So weird and scary all that was!! I even spent half of a night in the psyche ward.

Guys I'm sure there are many, many more but the point is that if I didn't hold my dose,and believe me I wasn't sure at that time it was going to help, I don't know what would have happened to me. As I held my dose I got much worse and thought it was all for nothing and thought I would die but that's not what happened thank God! As I held through the weeks I guess at some point my body adjusted itself to the new dose and I started to gradually see subtle improvements. My hold was working even when I thought it wasn't! I honestly think the main key to a hold is PATIENCE! We all want to be better yesterday but unfortunately that's not how it goes with benzos. You have to go low and slow or you end up in a world of shit in plain English. I started this journey at age 55 I'm now 58 so this summer marks 3 yrs on benzo buddies for me. BB was so vital to my healing and the wonderful people I have met who were so willing to help me. Everyone needs support through this and people who understand how hellish this can be so stay connected here on BB it's a life saver. You can draw hope and strength here, I know I did. I love my people here and they know who they are. People I will always have a place in my for heart or as long as I live. So if you've gotten through this very long post of mine my message is to please, please, please don't give up on your hold! Be patient and persevere! Hang in on those tough days bc there will be many but you'll also see good days too! The clouds will part and the sun will come just hang in there people!! It's hard, it's brutal but holding is an amazing tool! I'm proof!!

 

Love to all and the best of luck!

Trishy♥️

 

 

 

 

[[Tr...]]

Hey Stut!! My favorite one and only twin!! I miss you and think of your often!! Love you woman!! Hope to catch up with you soon. So glad that you're going back to work part-time if that's what you want to do. I'm cheering for you my dear twin! Love you, LST!! Dont you dare forget me!! 😉😘♥️♥️

 

Hey Mary!! Miss you, thinking of you girl! I pray all is well with you. 🙏🙏🙏

Love and miss you!!

Trishy, ♥️

 

A shout-out to all my other peeps here!! Ginger, olive, Meems, final, gp, NJ, English, jwl, Troch, vnm, oh my gosh and so, so many more! Don't get mad if I didn't get your name here the brain ain't what it used to be

Love you all!! Be well my people!

Trishy♥️🙏

[[Ma...]]

Trishy, it's good to see you post girlfriend!!  I am sorry I haven't pm'd.  Pain has pretty much taking up my days.  I am trying all these different stretches, exercises, massages and then Tim does a message at night.  It's been rough, but I am working on it.  I miss you.    Will your daughter be off for summer, so you get a baby break 👶❣️?  How is the rest of the family?  Did you read Stut's post?

Her wrist is still giving her trouble  .  We got 9.5 inches of rain from last Thursday to this past Monday.  My yard was a mud pit    But we really needed it, all of TX was in some form of drought.    You enjoy you great hubby, are you getting the pool ready?  I love ya Trishy, miss you too.

I have slowed walked my way to 5.7 mgs.  We will walk off very close together I hope , Mary

🙋🏼🙋🏼🙋🏼😘😘😘😘🙏🙏🙏🙏♥️♥️♥️.    Happy Mothers Day, beautiful woman  :smitten:    💐💐💐🌹🌷🌸🌸🌷

[[Ho...]]

Looks like I've been booted back to long hold.  February 27, 2021, I got down to .6 mg of Valium and all hell broke loose.  BP has been spiking out of control every day since then.  Multiple visits to ER, Atenolol (beta blocker) not helping and so strong 75mg a day, symptoms are worse than Valium.  I feel like I'm dying. 

 

  I updosed to 2 mg from .6 and didn't help.  Holding ever since but BP is STILL SPIKING daily.  Just now, 178/103.  Pulse 73.  Cardiologist told me to updose again.

That nearly killed me to hear that. 

 

      Question:  Has anyone updosed in here and still able to stabilize and get off this medication?

[[Ma...]]

Looks like I've been booted back to long hold.  February 27, 2021, I got down to .6 mg of Valium and all hell broke loose.  BP has been spiking out of control every day since then.  Multiple visits to ER, Atenolol (beta blocker) not helping and so strong 75mg a day, symptoms are worse than Valium.  I feel like I'm dying. 

 

  I updosed to 2 mg from .6 and didn't help.  Holding ever since but BP is STILL SPIKING daily.  Just now, 178/103.  Pulse 73.  Cardiologist told me to updose again.

That nearly killed me to hear that. 

 

      Question:  Has anyone updosed in here and still able to stabilize and get off this medication?

 

Yes HFR, lots of people have updosed and many more than once during their taper off these damn benzo's and still walked off.  Just try not to think of a time table, I know it is so hard, but think about being more comfortable or functional, let those be your guide.  After you updose, hold until you are feeling more stable before you start tapering again.  And then go slow, small cuts and maybe longer in between.  It really matters how you are feeling when it's time to walk off.  If you aren't in decent shape then, you may feel rough for a time afterwards but if you are feeling tolerable then, there's a good chance you will have an easier time of it.  Good luck HFR, we are here for you.   

[[Ho...]]

Thank you Mary.  My psychiatrist is retiring next month.  I'm having a hard time finding another doctor who will prescribe the medication.

[[Ma...]]

Thank you Mary.  My psychiatrist is retiring next month.  I'm having a hard time finding another doctor who will prescribe the medication.

 

I'm so sorry Hope  .  Did you ask your Dr now if they know another Dr?  I found several Dr's by going to google and putting in benzo wise Dr in San Antonio.  I really wasn't expecting to find any that way, but several came up.  I decided to keep my Dr, she knows little about benzo wd but she lets me guide and has told me many times as long as I am coming down some or holding, she is fine.  So in that regard she is fabulous.  I hope you find a new Dr soon, do you have any stash to help you get through for awhile?

[[Ho...]]

Only for a couple of months.  I am at 2 mg but I need to updose because the symptoms are so awful.  It's been over two months, but the symptoms only get worse not better.  So if I have to updose, then I only have a stash for a few months.

 

  Sure hope to God I can find someone to help me.  Thing is I was almost off this stuff before My BP started going insane and hasn't stopped.

[[Ma...]]

Only for a couple of months.  I am at 2 mg but I need to updose because the symptoms are so awful.  It's been over two months, but the symptoms only get worse not better.  So if I have to updose, then I only have a stash for a few months.

 

  Sure hope to God I can find someone to help me.  Thing is I was almost off this stuff before My BP started going insane and hasn't stopped.

 

Where you going too fast?  Valium is one of the benzo's that can sneak up on you because of the half life. It's happened to me several times.  :(. I can't wait to see all of us start walking off one day.

This is just so hard.  Let me know how you are andif you found a Dr.    LY. 🙋🏼😘🙏♥️

[[Ho...]]

Thank you.  Helped me to hear what you said, I feel so Stupid and Upset at the fact I should have held. 

[[Ma...]]

Thank you.  Helped me to hear what you said, I feel so Stupid and Upset at the fact I should have held. 

 

No, don't feel stupid at all.  You are part of a huge group of us that should have held way before we did, and again more than once.    I bet 75% of us have gone too fast.  And we all feel stupid, but we aren't, we just desperately want off.  💐💐💐.  🙋🏼🙋🏼

[[Ho...]]

So true.

[[Be...]]

Looks like I've been booted back to long hold.  February 27, 2021, I got down to .6 mg of Valium and all hell broke loose.  BP has been spiking out of control every day since then.  Multiple visits to ER, Atenolol (beta blocker) not helping and so strong 75mg a day, symptoms are worse than Valium.  I feel like I'm dying. 

 

  I updosed to 2 mg from .6 and didn't help.  Holding ever since but BP is STILL SPIKING daily.  Just now, 178/103.  Pulse 73.  Cardiologist told me to updose again.

That nearly killed me to hear that. 

 

      Question:  Has anyone updosed in here and still able to stabilize and get off this medication?

 

Hi Hope, I was just thinking about you recently, and haven't see you posting, and was wondering how you were doing. Yes, I updosed (because my provider made an error in my crossover amount and I was on too little) from 12 mg to 15 mg. It took me two months to stabilize only because I should have originally been on 20 mg and had been very sick W/D off of the huge difference. I used to post in this group, but haven't needed it since I'm now stable and tapering again, without too many problems. I've actually been feeling pretty good most of the time, except mornings. But mornings seem to be bad for most of us. My provider had never tapered anyone of benzos before, but she was quite open to learning and she made an error, and when several BB members pointed it out to me, she agreed and we decided on 15 mg because I'd likely already W/D quite a bit at 12 mg. 15 mg worked, I stabilized, and now am tapering.

 

So yes, you can updose and stabilize. I remember you were so close to jumping when the blood pressure and heart problems started. I imagine it's frustrating to be so close, and then find yourself updosing not once, but twice. Then having to taper down again. I remember you mentioning losing your doctor, and I read your other posts that you still don't have another. Can't your current one recommend another to you? Or would your cardiologist be willing to prescribe the V for you? It wouldn't hurt to ask, since it is the cardiologist suggesting you updose even more. 

 

This is a helpful board, and I may find I need to come back in the future, and know the help is here. I'm just happy that so far I've been mostly functioning between cuts, most I wait is 3 weeks. Make yourself at home, lots of good folk here, like Mary to help and guide you. 

[[Me...]]

Hi all,

 

my sister left this world at 1:40 am ET.  I am numb.  I don't know what to do with myself.  I am just going hold for as long as it takes. 

 

she has no more cancer.  Her radiant smile is back and her long beautiful hair.  one day we will dance again and laugh.  I know my dad met her at the light. 

 

It sucks to be in w/d and go through this. 

 

love you all,

Meems

 

 

[[Di...]]

Meems I am so sorry.

[[Be...]]

Hi Meems, I'm so sorry for your loss.