The Long Hold Support Group

[[Ca...]]

Thanks Mary for all your answers ! It means a lot to me.

 

I guess I can trust you about studying you wrote more than 20k messages ! 

 

You’re  my BB bible lol

 

Do you think we can still have a life while tapering? I understand everybody comes here when they are not feeling well... but can i expect to function and not being in hell all the time? Working ?

 

 

Xx hugs

[[Ma...]]

Thanks Mary for all your answers ! It means a lot to me.

 

I guess I can trust you about studying you wrote more than 20k messages ! 

 

You’re  my BB bible lol

 

Do you think we can still have a life while tapering? I understand everybody comes here when they are not feeling well... but can i expect to function and not being in hell all the time? Working ?

 

 

Xx hugs

 

Carla, that's a tough question.  Some people get to work, a lot don't.  Getting your taper balanced is hard, most functional people have gone slow and definitely taken their time in tapering.  Letting their symptoms be their guide.  So it is definitely possible to be functional but it takes practice and doing all those things that can help.   

[[Ca...]]

I wish this could be different

 

Maybe I will lost all I have and never have children because 1year and a half use of those stupid drug, I met my boyfriend 1 year ago he’s the best person I have ever met , he s helping every minutes since I’m feeling bad since 6 weeks ago. But I don’t know if he will stay with a sick 33 years old girl if it last...I don’t know how long it can last :'( sorry to share all this here but I have nobody else to share with...

 

I can’t believe millions of people on those drugs are feeling that bad and stopping their life while tapering... are we the unlucky ones ?  Where are all the other ones not writing on forums...?

 

My thoughts before going to bed..

[[Ma...]]

I wish this could be different

 

Maybe I will lost all I have and never have children because 1year and a half use of those stupid drug, I met my boyfriend 1 year ago he’s the best person I have ever met , he s helping every minutes since I’m feeling bad since 6 weeks ago. But I don’t know if he will stay with a sick 33 years old girl if it last...I don’t know how long it can last :'( sorry to share all this here but I have nobody else to share with...

 

I can’t believe millions of people on those drugs are feeling that bad and stopping their life while tapering... are we the unlucky ones ?  Where are all the other ones not writing on forums...?

 

My thoughts before going to bed..

 

I am so so sorry CC.  Yes, we are unlucky.  My husband has been wonderful through this and I am going to hope your bf treats you really well and stays by your side.  My best advice, is no matter how badly you feel, never forget to show your appreciation for all he does.  It's hard on men, they are fixers and he can't fix this, so if you can, don't always tell him everything,come here and tell us to give him a break.  You will make it, and have a husband and baby,every thing you want.  You just have to be patient and keep telling yourself, you will heal.  And we will be here.  😘😘😘🙏🙋🏼😷♥️♥️

[[Ca...]]

You are so kind Mary and with so many good advises.

 

I do cry in his arms everyday...

 

My only hope is that I can stabilize and maybe have a mild symptoms taper... I pray for that everyday

 

Hope I didn’t fuck up my CNS with going to fast at the beginning.

 

Sending love from Paris

[[Au...]]

TRIGGER WARNING - seeking advice. Contents describes symptoms. Please do not read if you think it may be distressing for you.

 

Can I join this group please?

I feel like this is where I should be right now. I’ve read the support and advice and would like to hear what your thoughts are on my situation.

I’m on Ativan and was having a lot of symptoms whilst on them and worse symptoms each cut 1/4 tablet and hold lasting approx 3 weeks then semi stablise... just function.

Nov last year I thought I’d do what seemed sensible and do a slow c/o to a longer acting benzo Valium. I felt weird right from the beginning and didn’t get any relief from the Valium. I was more anxious and I didn’t cut my Ativan just added 2.5mg Valium. I thought it was an adjusted phase and my dr increased to 5mg within days to help with my symptoms. I was having more symptoms but decided to stupidly cut my Ativan at Christmas. After 1 month after the cut  I continued to get worse so my Dr & I decided I should get Valium out of the picture, maybe a paradoxical reaction?. Thinking the Ativan would help me through, I did a quick taper of 5mg over 6 weeks. If it was causing a reaction I just wanted it gone. I was already non-functioning....

I’m now housebound, severe agro, panic, no appetite, anxiety and adrenaline feeling 24/7, 3 hours sleep, akathesia, crying everyday, depressed, tremors, full body movements (had before starting Valium but now extreme). Unable to read, craft or distract, sometimes I can’t walk. I can hardly eat just small things every couple of hours.. carrots, rice, lentils, sometimes veggies, quinoa porridge.

I plan to hold and hope that with time I will stablise. I’ve heard of people holding for months... after this experience I’m more than happy to do so.

I’m desperate for some relief but know that I react to lots of meds. It’s been 2 weeks since ceasing the Valium. Still on Ativan 1.5mg am, 0.5mg 1.30pm, 0.5mg 9.30pm. Was on twice a day dosing but also changed to 3 times a day in January.

 

Any support, experience would be most welcomed.

 

[[se...]]

Auusiegalrecovery,

 

Welcome!  You will absolutely find support here.  I am so sorry you are having such a rough go.  I think holding until you stabilize is the best option for you at the moment.  Your body will let you know when it is time to begin the taper again.

 

I think as days pass you will begin to feel better.  Do what you can to distract yourself as much as possible.  Try to rest whenever possible.

 

Best of luck..

[[Bo...]]

Has anyone had any success with birth control pills? I’m about 6 months out and really struggling with mostly physical issues. Sore, tight neck, headaches, muscle fasciculations, feels like one calf muscle is vibrating, and weak, shaky legs. My dr. Claims this is not from the klonopin but I’ve been to a neurologist and had multiple MRI’s and he can’t find anything. I really struggle between ovulation and period and I’m pretty stressed about my symptoms almost constantly. I’d really appreciate any advice regarding whether or not the pill might help. Thanks!

[[ho...]]

Hi Carla - I do believe you will stabilize, and it’s just a matter of time.  And the daily micro taper I am doing and going slow and symptom based is a game changer.  WOW!!  I won’t be off the medication when I thought I was going to be off, but I won’t be on the couch with the benzo flu feeling like I can’t go on either....so I am learning it’s “ok”.

 

Mary - Is very right about using us more as a venting support system than our great partner’s, as they can be “fixers” and it can become very hard on them.  I have to be carful myself.  My mom use to say, “never let them see you sweat”.....that is a little to extreme, because most  men want to see vulnerability in their women, a softness and humaneness about them.  However, we don’t want to overwhelm them with something they can’t fix....and they can’t fix this, that’s for sure.  You are not alone we are here for you 

 

Marie

[[ho...]]

TRIGGER WARNING - seeking advice. Contents describes symptoms. Please do not read if you think it may be distressing for you.

 

Can I join this group please?

I feel like this is where I should be right now. I’ve read the support and advice and would like to hear what your thoughts are on my situation.

I’m on Ativan and was having a lot of symptoms whilst on them and worse symptoms each cut 1/4 tablet and hold lasting approx 3 weeks then semi stablise... just function.

Nov last year I thought I’d do what seemed sensible and do a slow c/o to a longer acting benzo Valium. I felt weird right from the beginning and didn’t get any relief from the Valium. I was more anxious and I didn’t cut my Ativan just added 2.5mg Valium. I thought it was an adjusted phase and my dr increased to 5mg within days to help with my symptoms. I was having more symptoms but decided to stupidly cut my Ativan at Christmas. After 1 month after the cut  I continued to get worse so my Dr & I decided I should get Valium out of the picture, maybe a paradoxical reaction?. Thinking the Ativan would help me through, I did a quick taper of 5mg over 6 weeks. If it was causing a reaction I just wanted it gone. I was already non-functioning....

I’m now housebound, severe agro, panic, no appetite, anxiety and adrenaline feeling 24/7, 3 hours sleep, akathesia, crying everyday, depressed, tremors, full body movements (had before starting Valium but now extreme). Unable to read, craft or distract, sometimes I can’t walk. I can hardly eat just small things every couple of hours.. carrots, rice, lentils, sometimes veggies, quinoa porridge.

I plan to hold and hope that with time I will stablise. I’ve heard of people holding for months... after this experience I’m more than happy to do so.

I’m desperate for some relief but know that I react to lots of meds. It’s been 2 weeks since ceasing the Valium. Still on Ativan 1.5mg am, 0.5mg 1.30pm, 0.5mg 9.30pm. Was on twice a day dosing but also changed to 3 times a day in January.

 

Any support, experience would be most welcomed.

 

Welcome.  Sounds like a hold is the right thing to do.  You will know when you stabilize and then may I suggest going forward with a daily micro taper.  This is much more gentle and you have more control and you can also incorporate a “symptom based” taper.

 

Marie

[[Ma...]]

Hi Carla - I do believe you will stabilize, and it’s just a matter of time.  And the daily micro taper I am doing and going slow and symptom based is a game changer.  WOW!!  I won’t be off the medication when I thought I was going to be off, but I won’t be on the couch with the benzo flu feeling like I can’t go on either....so I am learning it’s “ok”.

 

Mary - Is very right about using us more as a venting support system than our great partner’s, as they can be “fixers” and it can become very hard on them.  I have to be carful myself.  My mom use to say, “never let them see you sweat”.....that is a little to extreme, because most  men want to see vulnerability in their women, a softness and humaneness about them.  However, we don’t want to overwhelm them with something they can’t fix....and they can’t fix this, that’s for sure.  You are not alone we are here for you 

 

Marie

 

Totally agree Marie  ;)

[[ho...]]

Mary....I was just piggy backing off you 

 

Marie

[[Ca...]]

Girls... thank you for your support everyday , I know I can  be a pain with my questions and my worries...needing reassurance

 

I did a Valium comparaison maybe you will understand better my case , so appparently I went from about 6,6V to 3,3V in 5 weeks when I started my taper, I crashed of course and tried to hold at 3,3Vfor 6 weeks but too difficult so back up to 4,4V this week.

 

The more I learn about you taper the more I think I have been crazy but doesn’t seem crazy to doctors...

 

Improving since I updosed , now  my symptoms are depressed and anxious about this benzo mess and a weird burning needle feeling on my tight ( and looping thoughts what if I don’t go back to normal , what if I’m the worst cases I read...)

 

All that sh*t  triggered my anxiety disorder on top of that  ...

 

Also my mom just had a vertebrate surgery this morning... I’m still waiting for News we are not in the same city, and I love her. Then she will have 4 months of recovery at least and I hope I could be well to go visit her , she is really worried with my state too...

 

Needed to vent this here <3

 

[[Ma...]]

Mary....I was just piggy backing off you 

 

Marie

 

.  I do it all the time 

[[ki...]]

Bookworm, personally I would stay away from birth control. Benzos screw with our hormones something fierce, I would let my body heal naturally and not add more hormones to the mix.

[[Au...]]

Thank you for the warm welcome and advice Marie & Seasalt.

 

When I do finally stabalise the plan is to DMT off the Ativan, symptom based. I have the scales & file ready to go. I was thinking reducing initially .001mg every 3 days and just go from there.

 

Now just waiting to stabalise. So intense. Especially when no sleep is added to the mix, essentially no break but we all know how that feels.

 

Thanks again for saying hi. I hope your both doing ok. Marie, great news about the DMT, how much and how often are you reducing? So glad this method is giving you some relief.

 

 

 

 

[Guest [fl...]]

Shayna, I just had the most horrendous 12 day wave from day 21 to the next cycle day 4! It was almost worse than acute! It HAS to get better from here! Finally getting some relief on day 5, so I guess hormones are coming back online...So, I feel your pain!

 

Bookworm, I have been looking into this too and just can't do it. The synthetic progestins can have a tremendously terrible impact on the brain. Tianpetine as been used for neuropathic pain (I just found out), which is fascinating. It has also been studied for PMDD. It can be started and stopped safely and has far fewer side effects than SSRIs. I just started in 3 days ago and so far, I like it as I am finally out of my 12 day wave, but it's quite early to tell for sure. It is only approved in Europe and Japan, so you have to have a level of comfort with treating yourself. You can get it in supplement form, but this is not regulated. That said, my husband bought that one for me and requested that I take it because he was so upset by what had happened to me. It has worked out great (I had to buy a super sensitive scale since it's a powder and dosing needs to be pretty precise). I trust it far more than I'd ever trust a birth control pill.

 

I was so terrified of the PMDD that I developed last two cycles, and the last cycle in particular. It was like a dementor was living in my brain, telling me that there is just no joy in the world or point of going on. I have never experienced anything like this in my life.

 

I have been researching every possible option to stop my cycles, because I am so scared of my next cycle. However, birth control pills could slow healing do to their many detrimental effects on the brain chemistry, including but not limited to a lowering of allopregnanolone, which is needed for a healthy brain. The next best option is Prozac, which is approved for PMDD and works well in many, at the low dose of 2mg. That said, every time I try even a low dose of any SSRI I get a ton of anxiety surges. Next, tianpetine has been studied in one small trial for PMDD with good results (may be other trials but this is all I could find in English), which is what I have settled on. The other options are less reliable and include oral micronized progesterone from day 14 - 28 and pregnenolone. These both raise allopregnanolone (just like the Prozac), and should work in theory. That said, they are not proven in the medical literature to work. So...here's hoping tianeptine keeps the dementors away!

 

Here's a layman's article covering tianeptine from a pretty conservative prospective: [nobbe]https://selfhacked.com/blog/tianeptine/[/nobbc]

It doesn't really do service to the many positive articles written on this drug that has been around for around 50 years, but it's interesting nonetheless.

 

 

 

Wishing healing to all!

 

_{edit: deactivate commercial link}

 

 

 

 

[[Bo...]]

Thanks to both of you for your responses. I’ll check out the article. Unfortunately, I can’t take Prozac. I took it for years but when I tried again a few years ago it caused me tons of anxiety.

[[Di...]]

I talked with my doc today and told her that I wanted to try a long hold.  She was very agreeable to that idea she told me that she blames herself for the mess I'm in and I didn't disagree.  She also wanted me to think about seeing a psychiatrist that does genetic testing to see how a person's metabolism responds to certain medications.  Has anyone dealt with anything like this?  I don't want to be practiced on with other meds or should I just continue to try a long hold.  Any input appreciated.

[[Ma...]]

I talked with my doc today and told her that I wanted to try a long hold.  She was very agreeable to that idea she told me that she blames herself for the mess I'm in and I didn't disagree.  She also wanted me to think about seeing a psychiatrist that does genetic testing to see how a person's metabolism responds to certain medications.  Has anyone dealt with anything like this?  I don't want to be practiced on with other meds or should I just continue to try a long hold.  Any input appreciated.

 

Wow, that was great of her to say that and to have the courage.  I have never had one, but lots of people on bb do.  One, it can tell you if you are metabolizing your benzo quickly, which is always good information to have.  Good luck!!  🍀

 

 

 

 

[[Tr...]]

Holy moley! Last month my cycle was okay - I had been doing a daily (every 4 days) micro taper for 2 weeks and things seemed ok. This month (exactly one month into micro taper) ovulation is kicking my ass. Akathesia, obsessive looping thoughts, panic (it’s been a while on that one), heavy heavy feeling uterus. I woke up and had a panic attack the other night - after having a weak cup of chamomile tea.

One cup, could that really set me off?

 

I just had a 3 week semi-window (only had balance issues and confusion from 12-5 daily- otherwise pretty okay). Maybe this is just another wave. I’m down to 0.208mg total K. Down 4% slowly over last month.

Hoping I pull out before PMS week.

Rough.

😬

[[Ta...]]

I will be getting my period during the full moon. Wish me luck !   

[[Di...]]

Mary thank you.  I'm just so uncertain I really don't know what good the testing would do.  😕

[[ho...]]

Girls... thank you for your support everyday , I know I can  be a pain with my questions and my worries...needing reassurance

 

I did a Valium comparaison maybe you will understand better my case , so appparently I went from about 6,6V to 3,3V in 5 weeks when I started my taper, I crashed of course and tried to hold at 3,3Vfor 6 weeks but too difficult so back up to 4,4V this week.

 

The more I learn about you taper the more I think I have been crazy but doesn’t seem crazy to doctors...

 

Improving since I updosed , now  my symptoms are depressed and anxious about this benzo mess and a weird burning needle feeling on my tight ( and looping thoughts what if I don’t go back to normal , what if I’m the worst cases I read...)

 

All that sh*t  triggered my anxiety disorder on top of that  ...

 

Also my mom just had a vertebrate surgery this morning... I’m still waiting for News we are not in the same city, and I love her. Then she will have 4 months of recovery at least and I hope I could be well to go visit her , she is really worried with my state too...

 

Needed to vent this here <3

 

Hi -

You’re welcome, that's why we are all here!  We are here to encourage and support each other

 

Your taper was FAST!!  No wonder you crashed.  I know there is the whole “ up-dosing” thing of both sides, and honestly I don’t know those answers.  However, you definitely need to stabilize and if that gets you there, then that’s a win, and it sounds like you are feeling better.

 

Try not to give the “benzo mess” too much power.  There isn’t much you can’t do at this point, but move forward. You can’t change the past.  Now is about stabilizing and focusing on “ healing” and eventually moving forward with your taper.

 

Sorry to hear about your mom.  I hope she recover’s quickly and you will feel well enough to go visit her very soon 

 

Vent away 

 

Marie

[[ho...]]

Thank you for the warm welcome and advice Marie & Seasalt.

 

When I do finally stabalise the plan is to DMT off the Ativan, symptom based. I have the scales & file ready to go. I was thinking reducing initially .001mg every 3 days and just go from there.

 

Now just waiting to stabalise. So intense. Especially when no sleep is added to the mix, essentially no break but we all know how that feels.

 

Thanks again for saying hi. I hope your both doing ok. Marie, great news about the DMT, how much and how often are you reducing? So glad this method is giving you some relief.

 

You’re welcome, and so glad you’re here 

 

I am glad you are going to hold and get stabilized and then do your DMT.  The SX are the worst, but you will get better with time 

 

I am doing a DLMT with liquid V, that is compounded at a local pharmacy.  So right now the compound is 2ml = 10 mgV.  I started out at 10mg of the liquid when I c/o for the DLMT and then started at 1.99 first night, 1.98 2nd nigh, 1.97 3rd night, 1.96 4th night, 1.95 5th night (.5mg down) 6th day I was feeling it and so I held at 1.95 for like 3 days...then I continued to 1.94 but I still was really feeling the symptoms so I stayed at 1.94 for like 4 or 5 nights ( one night I accidentally updosed to 1.96, I was tired...I’m not worried about it) and that helped, and last night I did 1.93 and tonight I am doing 1.92.....I am planning on doing 1.91 on Saturday and 1.90 on Sunday, but this could change.  I am doing the Micro/symptom based/hold taper.  So right now, as this is new, I don’t know the formula yet.  I bought a new journal specifically for this and it came today.  So I will journal everything, to figure out a plan moving forward.

 

I can say this is already so much better