The Long Hold Support Group

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I'm just wondering..if there are benzo gods..what do they accept as a sacrifice?  JK.

Using humor to cope...

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Hello everyone. I have a question. I’ve been on diazepam for since September 2020. I stabilized at 10mgs after hell with lorazepam. Then I started tapering. I got to 7.5mgs with the 5mgs tablets. That was 11/13/20. I was going through hell for about 5 weeks, then started having windows. Then my psychiatrist switched me to the 2mgs tablets. Since then, I’ve stayed at 7.5mgs but have gone downhill. The pills are Teva, just like the 5mgs tablets. Could the 2mgs be less potent or am I just crazy? Sleep is horrible and I have many sxs. I’m staying at this dose hoping to stabilize. Has this happened to anyone else? After I eat something my heart pounds for hours. I thought that I was stabilizing. But just crashed since Christmas. Thanks for any feedback.

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That's funny Trina,  I'm currently microtapering from Diazapam.  I've redone my schedule to hold during my period.  So I won't be making any cuts during my period this month and I'm going to see if that makes a difference.  I was watching the most recent interview on Benzo Brains (youtube).  A survivor/advocate talks a lot about the menstrual cycle and benzos. She said many women have had hysterectomies (which makes things worse). 

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I have switched from the 5 to the 2 mg.  I didn't have problems.  It might be that you are in a wave.  Some people hold a really long time and it totally helps.  I only hold about 2 1/2 weeks and then I notice I start to go downhill.  (I should not even be in the long-hold support group but I always like to read about different perspectives). 

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I have switched from the 5 to the 2 mg.  I didn't have problems.  It might be that you are in a wave.  Some people hold a really long time and it totally helps.  I only hold about 2 1/2 weeks and then I notice I start to go downhill.  (I should not even be in the long-hold support group but I always like to read about different perspectives). 

Thank you. I’m just looking forward for some stability. My body lied to me! I really had started feeling better. Now of course it’s all the worries of paradoxical, interdose withdrawals, never going to make it. I’ve only been taking it once nightly. I went to Oakland December 23rd and when I got back on the 24th I felt off. Christmas was a nightmare. But I will hold to see what happens next. You never know though with these poison pills.

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Also, I have been starving myself because every time I eat I get hit hard. Anything I eat!

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Also, I have been starving myself because every time I eat I get hit hard. Anything I eat!

 

Scorpio,

I also had a pounding heart after I ate.  Still do sometimes.  I believe it is severe acid reflux caused by benzos.  It helped to eat small amounts and lay off foods that exacerbate reflux.

Sorry you're struggling, take time to let things calm down.  I held 8 months a couple years ago and it helped. Ginger

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Also, I have been starving myself because every time I eat I get hit hard. Anything I eat!

 

Scorpio,

I also had a pounding heart after I ate.  Still do sometimes.  I believe it is severe acid reflux caused by benzos.  It helped to eat small amounts and lay off foods that exacerbate reflux.

Sorry you're struggling, take time to let things calm down.  I held 8 months a couple years ago and it helped. Ginger

Thank you. On the 13th of this month it’ll be 2 months that I’ve held. I’m just hoping for some improvement. I was feeling and enjoying my windows then just got hit all over again. I know I’m due for another iron infusion soon. Maybe that will help. My iron deficiency is what got me in all of this mess! Thank you again.

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I also must say that for me and several of my friends, the gastric bypass is not worth getting. To many health complications. I wish I could reverse it.

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Hi ladies. I hope you are doing better for those who have been in waves. Does anyone else find themselves feeling guilty for being in a window when everyone else seems to be in a wave? I felt guilty reading most recent updates from you, I really hope it settles soon for everyone. Update: I went to the gynie and she believed me about the benzos. She doesn’t understand benzo withdrawal in-depth but she believed what I said and was cringing as I was telling her what happened. It was so good to not have to defend this condition..... She said my missed period could have been due to withdrawal, my age or stress or all three. She advised that I should either freeze my eggs or make plans to fall pregnant as soon as possibly possible.. She is in her mid 30’s and said she froze her eggs as well. She said her heart breaks every time she has to tell a woman that her eggs have depleted or has to deal with a couple struggling with fertility... and encouraged me by saying she believes I’m strong enough to carry a pregnancy and it’ll be tough but I can do it and will thank myself for it in a few years. She ran an AMH blood test so we can see my egg levels, from the scan the results should be okay. So my husband and I have decided to not freeze the eggs but rather start trying for a baby later in this year. At the end there is never a perfect time to start a family so I won’t delay it because of this withdrawal.

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Hi ladies. I hope you are doing better for those who have been in waves. Does anyone else find themselves feeling guilty for being in a window when everyone else seems to be in a wave? I felt guilty reading most recent updates from you, I really hope it settles soon for everyone. Update: I went to the gynie and she believed me about the benzos. She doesn’t understand benzo withdrawal in-depth but she believed what I said and was cringing as I was telling her what happened. It was so good to not have to defend this condition..... She said my missed period could have been due to withdrawal, my age or stress or all three. She advised that I should either freeze my eggs or make plans to fall pregnant as soon as possibly possible.. She is in her mid 30’s and said she froze her eggs as well. She said her heart breaks every time she has to tell a woman that her eggs have depleted or has to deal with a couple struggling with fertility... and encouraged me by saying she believes I’m strong enough to carry a pregnancy and it’ll be tough but I can do it and will thank myself for it in a few years. She ran an AMH blood test so we can see my egg levels, from the scan the results should be okay. So my husband and I have decided to not freeze the eggs but rather start trying for a baby later in this year. At the end there is never a perfect time to start a family so I won’t delay it because of this withdrawal.

 

OMG...happy for you! Glad you're in a window...glad your gynie was so on board and validating....glad you will start trying to grow your family this year - create joy after all of this! In my head I will throw you a baby shower..

 

But seriously don't feel guilty for a window - if anything we need to hear about it so it gives others hope bc they/we are watching your journey too!

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Trying, please don’t feel guilty! I am so happy you are in a window. I agree with Trina, it helps me feel better when others post about how well they are feeling.

 

How exciting that you will start trying for a baby. I hope you’ll post when you get pregnant, I know that news will give me a lot of hope (and others too)!  :smitten:

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Olive Kitty thank your for the advice and encouragement. And for explaining how your hold and sxs went during the long hold. A  year and a half, right? Alright, I think I'll just hold indefinitely. If my sxs subside, then I'll resume taper. If they don't I'll just stay on this dose. My psych doctor wants me to do that anyway (I think he's scared I'll jump off a cliff with my car because that's how I was when he first met me in summer 2019, and he doesn't want that on his conscience). It took me five doctors to find this one. The rest were complete idiots.This one doesn't get it 100% because nobody who hasn't been through this gets it, and as nice as he is, usually they trust their books and pharmaceutical company papers more than what patients tell them. In any case, I'm lucky to have found him.

 

Mary thank you dear, I'll send Sheyna your regards  I'm glad you and Tim have each other, it's so important.

 

Trishy thanks for believing I'll succeed. I have my doubts but I'm working on accepting what is. If I can't taper I'm trying to accept that too. I hope you find the  inner peace to accept the things that will always be there scaring us in life. Deep down you're a very strong woman, you got through your childhood and here you are, so you'll get through anything that life throws at you.

 

NJ I'm so glad your son is feeling better at last.

 

Trotschetter I'm very scared of the vaccine but I guess I'll take it when the time comes.

 

Stutt, sending you love and a big hug.

 

Hi everyone else. Wishing you all plenty of windows and healing.

 

Happy Epiphany.

 

 

Hi Vali! Yes maybe it was a year and a half.. I already forget because it's ALL in my rearview mirror now! And hopefully it will be for you as well someday. I am glad to hear that you are going to hold until you feel better. It was the best thing I could have done at the time. And mind you, I didn't hold until I felt GREAT.. I held until I knew I was ready and that was very clear to me. Just a slight change in everything, a sparkle to the air had returned. Snuggle that kitty for me!

 

NJ it was so good to hear from you. I'm happy to hear that you are holding this year, and I'm glad you are doing well. Thinking of your son, it's great that he is seeing someone for the anxiety. So much of it going around these days!

 

Hi Stut! Trishy, Mary, Suzy, Final, EVERYONE, sending love.

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Thank you Olive Kitty 🙏🙏🙏🌹

 

Did anyone ever have magnetotherapy? I had it today for my shoulder and my sxs are ten times worse. I wonder if it was the culprit.

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Trying- great news ! On appt and the window. You’re healing is soooo encouraging for us, don’t feel guilty !

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Olive Kitty thank your for the advice and encouragement. And for explaining how your hold and sxs went during the long hold. A  year and a half, right? Alright, I think I'll just hold indefinitely. If my sxs subside, then I'll resume taper. If they don't I'll just stay on this dose. My psych doctor wants me to do that anyway (I think he's scared I'll jump off a cliff with my car because that's how I was when he first met me in summer 2019, and he doesn't want that on his conscience). It took me five doctors to find this one. The rest were complete idiots.This one doesn't get it 100% because nobody who hasn't been through this gets it, and as nice as he is, usually they trust their books and pharmaceutical company papers more than what patients tell them. In any case, I'm lucky to have found him.

 

Mary thank you dear, I'll send Sheyna your regards  I'm glad you and Tim have each other, it's so important.

 

Trishy thanks for believing I'll succeed. I have my doubts but I'm working on accepting what is. If I can't taper I'm trying to accept that too. I hope you find the  inner peace to accept the things that will always be there scaring us in life. Deep down you're a very strong woman, you got through your childhood and here you are, so you'll get through anything that life throws at you.

 

NJ I'm so glad your son is feeling better at last.

 

Trotschetter I'm very scared of the vaccine but I guess I'll take it when the time comes.

 

Stutt, sending you love and a big hug.

 

Hi everyone else. Wishing you all plenty of windows and healing.

 

Happy Epiphany.

 

Beautiful post Vali! Love the end 🙏✝️.. I do believe in you. ❤️ Trishy ❤️

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That’s wonderful, Trying.  The validation, the support, and the promise of the future!  Thank you for sharing that experience.  Waves suck but positivity makes hope possible. 

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I hope everyone is hanging in there. I am at the end of week 13. Last week all my palps disappeared, but anxiety is up and down. Great windows, nasty waves...I was wondering if it was PMS but it really is like every other day, so I don't even know anymore! I could start my period any day now (21-24 day cycles). Boo!!!! and...yay!!!

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So happy to hear you’re having big windows, fluffer! Time really is our friend, isn’t it. I’ve got those big windows and nasty waves too. Keep on keeping on...you’re 13 weeks closer to healed. 🙌🏻

 

Beauty

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I hope everyone is hanging in there. I am at the end of week 13. Last week all my palps disappeared, but anxiety is up and down. Great windows, nasty waves...I was wondering if it was PMS but it really is like every other day, so I don't even know anymore! I could start my period any day now (21-24 day cycles). Boo!!!! and...yay!!!

 

It will happen like that even when you're not near the PMS time for awhile - sorry.  Your body is working hard to restore itself:)

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Yay! I’ll let it keep working! Stay strong everyone!

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From Stut she is working 14 hour shifts and didn't have time to post.  I copied what she said.

She loves you all. 

 

"Morning Lady Mary would you leave a message for me on the LHSG l haven't time to post there.Tell them l am thinking of them and will post when l can.Give my twiny a big love you from her favourite sis."    She is totally overwhelmed at the hospital  :(.    Please send her your thoughts.  I love you all too!! 

Mary 🙋🏼🙋🏼🙏🙏🙏🙏🙏🙏😘😘😘😘😷😷😷😷😷.      ♥️💕❣️♥️💕❣️♥️

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Thanks Mary!

 

Love you Stut! Sending so much love from over here.

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Well, the wave from h*** seems to have finally subsided. I ovulated yesterday or today, and with that change came a cessation of tremor, my sleep returned last night, my mouth burn is back in the background, and I had energy to clean up the house this morning. The tight correlation with my cycle has me wondering what I can do to ease the buzz of hormonal changes, but everything I’ve learned says time is the only healer.

 

Thank you all for hanging in these trenches with me. This was my darkest wave, and I clung to your stories and encouragements throughout.

 

Beauty

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Beauty - so sorry. We're def with you in this!

 

Ok I'm having a tiny freak out in my head...I started back to work this week PT. After today I get 2 days off - but then back on fri/sat.

Guess what comes fri/sat - yup lucky me! I'm more concerned about heavy flo than symptoms right now. Who am I kidding - both are a concern.

Anyhoo..this would be a good month for things to hopefully settle down a bit:)

fingers crossed!