The Long Hold Support Group

[[Ca...]]

Hi Ladies,

 

Here is my story... I went too fast in my taper cut 50% of my dose in 5 weeks and hit a wall 4 weeks ago, I am holding my dose since 5 weeks , I was slowly improving and was physically feeling better , with still some anxiety and a lot of intrusive thoughts and fears about the withdrawal but was moving in the right direction, and today boom I’m worst than EVER had some akathisia and lot of HUGE waves of chemical anxiety , literally in agony .

 

My periods are in about 7 days , I have boob pain so I guess all this is amplified by PMS :'(

 

I was almost thinking to go to psychiatric emergencies to tell you how bad it was .

 

Im losing hope I won’t stabilize after this big cut . I can’t stay like this for months ...

 

Thank you xxx

 

[[Wi...]]

Hey all.

 

I suffered very much from this pmdd the last couple of months but last month I took NAC the 2 weeks before my period and it was such a difference!! No depression at all. It was like day and night. And when I had my period I stopped taking the NAC. And now two weeks my period again I started to take it again and no symptoms so far. Amazing.  And I googled nac + pmdd and they have done studies and it says that NAC is as effective as ssri to treat this condition.

[[Ca...]]

Winchesterpang , what is NAC ? Does it help with anxiety ?

 

Thank you

[[Be...]]

Aw, Bess55, I’m so sorry! I’ll give you my two cents after pondering this a while. I’m trying a few things and mine is due in a week, so I’ll let you know. At five months out with one missed cycle, it’s still hard to tell what works as my acute lasted almost four months of that.

 

I’m 48 also, so I feel the perimenopausal pain.

 

A few considerations. Test your hormones on day 21. I like ZRT but you can use any lab. Progesterone, estrogen, testosterone, DHEA, cortisol in the am. Also test you thyroid with a complete panel - tsh, free and total T3 and t4. if anything is low or even low normal, this is a red flag.

 

Interventions range from mild to aggressive. There’s no one answer of course and both doing nothing and doing something carry risk (maddening.)

 

Vitex is an herb that can regulate cycles and helps some. It’s a pretty benign option. Bio identical oral progesterone in small doses can help as well since this is basically progesterone withdrawal. I do tiny doses with improvement. If T3 is in the bottom half of the range, a small amount of replacement can be life changing. There are even some natural supplements, but they vary. Most prefer not intervention and I understand this too.

 

Perimenopause is tricky. Hormones can really get in the way of recovery. Allopregnanolone is a key neurosteroid for calming the brain. It is produced by progesterone and the highs and lows made it harder for our brains as there’s that withdrawal at the end of the month.

 

Hopefully you aren’t on birth control pills.

 

I’m so sorry you had a rough time of it - I hope it gets better soon! Do you feel better once your period starts and up until week 3 usually?

 

Hi, thanks so much, I really appreciate your help. I’ve woken up I’m absolute panic. My anxiety & impending doom is massive today. Worse than it’s been in a long time, like I’m back in acute,  I’m so frightened.

 

Usually I feel better up to about week 3 ish & then it varies - sometimes it’s up until when my period is over, sometimes it’s when I’m on day 2 of my period & sometimes it’s when my period starts. I don’t know what to do - I’m paralysed by fear. Sometimes my periods are super heavy & sometimes super light. I just want to be healed so so much. Thank you for your help.

 

 

[[Ca...]]

Hi Bess,

 

I feel you so much 

 

Did you take benzo for anxiety ?

 

You know there is a lot of stories saying that sometimes after the worst wave it’s over, they are cured.

 

I know how horrible it is, but you ride the wave in the past you can do it again it is only stress hormones running through your body...that’s what I try to tell myself . That’s the best way to deal with anxiety

 

In the past I used to take borage oil for pms and anxiety and it used to be very efficient , and many report that on an anxiety forum. Just thought about that I don’t know if some of you have an opinion ?

[[Tr...]]

Hi Ladies, I want to reassure everyone going through a hard time that it does get better with time. I know it doesn’t feel like it now and you think this is your life now and it’s going to be like this forever but it isn’t. It will get better I assure you. And the weirdest thing is that it can get better quickly after being horrible for many months. Also weird is that once it’s better the brain forgets the symptom. Yes forgets!! I’m still trying to wrap my head around how that works but your brain will indeed forget a lot of the details of what you are feeling now. You will never forget this horrendous experience but it will not be as vivid as you are experiencing it now. I just finished another period and had no ramping up of symptoms. Trina I’m glad to hear you are on the same trajectory and that your vivid dreams are easing up, that is fantastic and a good sign. Bess, hang in there, I remember how scared I was of sleeping, the brain zaps, the cortisol rushes, the traumatic dreams, just so much unexplainable unimaginable pain I see you experiencing now. Know it does get better as your body heals and you too will be writing something similar to what I’m writing one day. Carla, the same with you.... Many of us stopped these meds different from each other but at the end we all stabilize and start to heal. Even those that fast tapered such as yourself. I assure you, it will start to get better. I used to hate hearing this when I was very sick, I thought people didn’t understand or didn’t feel the same pain I felt. How could they keep saying we all heal, how could I ever recover from such damage... but you know what... your body will slowly, painfully start to rebuild and one day after many days and months, you will start to feel the healing slowly happen...

 

On a personal note, I shared that I quit my job a while ago on this thread. I felt like I’d lost so much through this process, years of hard work establishing myself. Now I realise what a blessing that was. Looking back I realise  my work environment was very toxic and harming me. I needed to go and withdrawal forced me to leave. I’m happy to say I’m now gaining something as I’ve just landed a new role, I believe this will be better suited for me. Thank you to all the ladies who encouraged me to prioritize myself and supported me when I was really down because of this. Your kind words really helped me a lot. It’s amazing how you’ve added to my life yet we have never met. Thank you... and yes we are still planning a baby later in the year :-)

[[Ca...]]

Thank you for cheering us up!

 

You went through a lot not even taking meds very long...! This is so unfair

 

Im suffering since 4 weeks and it feels like 6 months... and I will still have half of my dose to taper after that, hopefully quite a low dose.

 

So I still have benzo in my system and makes me wonder if i can heal , stabilize and go on. It scares me and depress me a lot...

 

Thank you for bringing such a positive vibe.

 

I’m 33 and my life is on hold too. I leave in Paris , I’m a fashion designer lost my job because of covid and now have to wait to recover to work again one day....

[[Ca...]]

Hi there ,

 

Need some support, holding since 4 weeks since I went way too fast with my taper and crashed.

 

I have improved bit by bit , but now back to square one because of my premenstrual syndrome HUGE chemical anxiety .

 

It’s horrible , I despair , I don’t know if holding will help? Some say that we never stabilize....

 

Need some positive stories

 

Thank you

[[Be...]]

Hi Bess,

 

I feel you so much 

 

Did you take benzo for anxiety ?

 

You know there is a lot of stories saying that sometimes after the worst wave it’s over, they are cured.

 

I know how horrible it is, but you ride the wave in the past you can do it again it is only stress hormones running through your body...that’s what I try to tell myself . That’s the best way to deal with anxiety

 

In the past I used to take borage oil for pms and anxiety and it used to be very efficient , and many report that on an anxiety forum. Just thought about that I don’t know if some of you have an opinion ?

 

Thanks so much.  I really appreciate your kind words & encouragement.  I took Valium for 5 months for  knee injuries (both knees) stupid I know.  I had anxiety & PTSD before benzo use though - although nothing like the anxiety I now know I’m withdrawal.  It’s shocking.  I’m on the wurst wave yet I think.  I’m getting barrelled with symptom after symptom. God I hope this is the last wave & after this I’m healed. I’m trying my hardest to stay positive. 

 

How are you going? I hope you are doing ok.

[[Be...]]

Hi Ladies, I want to reassure everyone going through a hard time that it does get better with time. I know it doesn’t feel like it now and you think this is your life now and it’s going to be like this forever but it isn’t. It will get better I assure you. And the weirdest thing is that it can get better quickly after being horrible for many months. Also weird is that once it’s better the brain forgets the symptom. Yes forgets!! I’m still trying to wrap my head around how that works but your brain will indeed forget a lot of the details of what you are feeling now. You will never forget this horrendous experience but it will not be as vivid as you are experiencing it now. I just finished another period and had no ramping up of symptoms. Trina I’m glad to hear you are on the same trajectory and that your vivid dreams are easing up, that is fantastic and a good sign. Bess, hang in there, I remember how scared I was of sleeping, the brain zaps, the cortisol rushes, the traumatic dreams, just so much unexplainable unimaginable pain I see you experiencing now. Know it does get better as your body heals and you too will be writing something similar to what I’m writing one day. Carla, the same with you.... Many of us stopped these meds different from each other but at the end we all stabilize and start to heal. Even those that fast tapered such as yourself. I assure you, it will start to get better. I used to hate hearing this when I was very sick, I thought people didn’t understand or didn’t feel the same pain I felt. How could they keep saying we all heal, how could I ever recover from such damage... but you know what... your body will slowly, painfully start to rebuild and one day after many days and months, you will start to feel the healing slowly happen...

 

On a personal note, I shared that I quit my job a while ago on this thread. I felt like I’d lost so much through this process, years of hard work establishing myself. Now I realise what a blessing that was. Looking back I realise  my work environment was very toxic and harming me. I needed to go and withdrawal forced me to leave. I’m happy to say I’m now gaining something as I’ve just landed a new role, I believe this will be better suited for me. Thank you to all the ladies who encouraged me to prioritize myself and supported me when I was really down because of this. Your kind words really helped me a lot. It’s amazing how you’ve added to my life yet we have never met. Thank you... and yes we are still planning a baby later in the year :-)

 

Thank you so so much for this. I really appreciate your kind words & encouragement. I’m

So grateful fir your post thank you. Did you find you got much better after a really bad wave or was it more gradual. God I’m clinging on fir dear life right now.  Trying to stay positive.  Trying my best.  I hood you are well & having a good day.

[[Be...]]

Hi everyone,

 

I hope you’re all doing ok. I’m on day 3 of my oriod & I literally feel like I’m losing my mind. I can usually get myself out of the awful places my head wanders too in a wave but right now I’m struggling - I feel like I’ve gone crazy.  Help

[[Tr...]]

Hi Bess, remember you are 14 months post taking the meds. The meds do not have any more power over you than to just inflict withdrawal on you. Like my family says... what you are feeling are the last kicks of a dying horse... This withdrawal cannot harm you any more than it already has. The feelings during our periods can get overwhelming but you can  ride it out. It will settle once the period is over. I know it feels like what you are feeling will last forever but it won’t. Remember all the times you felt relief... it will happen again. You are not crazy, you are healing. I found my baseline improved after having increased symptoms so hang onto that hope...

 

Carla, perhaps not working at the moment will help reduce the stress so you can focus on the rest of your tapering. You are 33 years and will get through this and one day you will look back and appreciate how strong you are. You and your boyfriend will have a happy life and you will do everything you have ever wanted. Just put your fighting gloves on and fight to get through this. You will thank yourself in the future.

[[su...]]

Welcome Carla.  You’ve found a swell group of gals here. 

 

Bess, I am feeling you right now.  Month 6 is almost at an end for me but I’m in a bad place right now again. It’s ovulation time, give or take, as my period was late this last month for the first time during this process, but really I’m not sure if it’s ovulation making the wave worse or not.  Other stressors happening in background (my MIL passed away from covid last month and we are now quarantined while hubby is in isolation here at house with a mild case—thank goodness—from when he was exposed at work last week), but I feel like I’m handling the stressors well.  Maybe not. Sxs are ramped up right now.  This is so hard and I don’t feel so much crazy as I do broken. 

 

Trying, I needed those words on this thread today.  Thank you so much. 

[[Gi...]]

CarlaCarla,

From my personal experience I have found holding does help.  It can take a long time though.  Four weeks is not a long hold.  It generally took months for me, six or seven typically.  And along the way there were setbacks at times.

 

I can't speak to the premenstrual syndrome, I was past that.  I'm sorry you are having a hard time.  Be patient.  Anxiety is awful but it isn't fatal. Just don't give up.

 

This group has been quiet but others will respond I'm sure.  Ginger

 

 

[Guest [fl...]]

Hi Sunshine and Bess and others struggling, I feel you.

 

I have been trying to figure out how to balance my hormones, understand receptors and minimize symptoms but it is so hard. I am 5.5 months out and 6 days from my period. The rollercoaster is unbelievable. I had an amazing day 8 days before, a horrid day yesterday, and a generally off day today.

 

I want to be healed so badly, and every great day gives me hope until the next crash.

 

I know that once progesterone peaks, the receptors in the brain down-regulate to this high dose. Then, when progesterone falls, the receptors have to recover again. I have looked at all kinds of studies, trying to figure out if there's a way to reduce the pain. I do take progesterone for the fall on days 25-27, but I can't figure out how to address the rise and receptor desensitization. It's like I'm left with too few receptors all at once, and I fall into a wave. Thyroid replacement has helped a lot, but it's not the same as having a working brain!

 

I guess the answer is time and healing, but man, I just want to feel better now. Like you guys, I was on benzos for a short period, not daily, not high dose, and thought maybe I'd be one of those lucky people who healed before a year. I am still hoping, but also in a bit of depair. Sometimes I just don't know how to go on like this. Hugs to everyone.

[[Ca...]]

Fluffernutter Im sorry....that’s crazy you have been on it for such a short period...

 

Can I ask you why did you start benzo?

[Guest [fl...]]

I started the benzo for sleep and took it only twice a week :-( once interdose withdrawal caused panic attacks, I took more and more then realized after a few months what was happening. Didn’t realize I should quit CT. Have thought of reinstating and doing a taper but I’m better enough now I think it wouldn’t help. In the gray zone of miserable but probably better than a taper.

[[Tr...]]

Fluffer, looking at how some of us have done, you are over halfway to being okay, not necessarily healed but okay. Hang in there... reinstating at this point would be regressing. I also thought no way would I be sick so long... I also took the meds for sleep. Short term. Finding acceptance and the light through this experience is key. We are the lucky ones for we know what is wrong with us. There are so many out there suffering not knowing what’s causing it... I know it sounds wishy washy and unscientific but you must trust your brain and your body to undo the damage... They are working 24/7 to repair and you will start to realise this as you heal if you haven’t started realizing it already... It won’t be like this for ever. I have been where you are and I am better! I know we all think our pain is different, worse, far worse than others but do know that as someone who has gone through my own withdrawal, the pain goes away. You start stabilizing and the anxiety and panic goes away. I was unbelievably unstable, the whole 2020 I cried a river, the worst year of my life! So it’s surprising how stable I am now. It will happen for you too, I assure you.

[[Ca...]]

Trying2behopeful, Im suffering since one month because of my too fast cuts and so many day it feels like I can’t stay like that long, my only symptom is Huge anxiety and back into the cycle of fear of fear this is horrible.

 

Anxiety is 11 on 10 , Im exhausted.

 

I don’t know how people stay strong so many months.

 

Today I feel I need help or maybe going back to my dose or other meds or i will break mentally.

 

:'(

 

 

[Guest [fl...]]

thank you teying2bhopeful. When did your mental symptoms go down? Mine are improving but still some spikes at 5.5 months.

[[gi...]]

Hi there ,

 

Need some support, holding since 4 weeks since I went way too fast with my taper and crashed.

 

I have improved bit by bit , but now back to square one because of my premenstrual syndrome HUGE chemical anxiety .

 

It’s horrible , I despair , I don’t know if holding will help? Some say that we never stabilize....

 

Need some positive stories

 

Thank you

Hi CarlaCarla,

Yes, I’d continue to hold - my last cut was small and I’m still holding after 10 weeks. In my experience I make cuts and hold until I’m somewhat stable/back to normal and then decide when to cut again. That way it feels like I am healing my CNS a bit and am able to deal with the new set of w/d that comes with each cut.

I get horrible PMS but try to find different and totally separate ways to deal with it rather than benzos - have you tried anything else? I know it can be awful but I’ve found that breathing exercises and physical movement helped me tremendously along with changes to my diet. I throw the kitchen sink at my anxiety these days 

 

I’m not familiar with what you take (aside from a quick google search) but it seems like you’re cutting very fast? Is this from your dr’s instructions or a personal decision?

[[Tr...]]

Fluffer at 5.5 months I hadn’t even started recording symptoms that had healed because I was still dealing with so many. I couldn’t function, I was in pain 24/7 crying every single day. I wanted to die. I mean this and am not just saying it, i know you understand... Anxiety was still massive, tinnitus overwhelming and during my period I’d just sit in panic with everything ramping up. I cried every and I mean every single day during this time. I honestly thought my life was over. I hated night time. I couldn’t sleep and was afraid of the dark. I started feeling bouts of relief at month 6, month 9 saw more improvements which felt significant and during this time I stopped thinking about death. Month 12 I saw very good improvement, I didn’t cry for a whole month and I haven’t cried because of pain since... and it’s been getting more stable with no more waves, just slowly getting better hereon forward. I’m now careful not to set myself back with meds, foods, alcohol, stress etc. I did cry today though because of joy listening to Vivaldi and realizing how clearly I could feel my emotions and also realizing how I almost lost my life. I may not be 100% healed yet but I made it!! And Carla you will also make it too. I had never taken these meds before so it was very clear to me they were the problem so going back on them was never an option. I knew I needed to hang on and ride the nightmare out, I had no choice, I couldn’t escape myself. And now I am so proud of myself. You can do this...! It’s hard I know, but you can do this.

[[ki...]]

Trying, crying for joy. That is just beautiful. I miss being able to feel my emotions. I know both benzos and Effexor have taken that away, I can’t wait to feel real emotion again. 

[[Tr...]]

Hi LHSG-ers,

 

Hope you're all doing better today.

 

Just here to tell you I'm down to 1,2 mgs of Valium tonight. Never thought I'd make it this low...But have to add it's getting harder to do atm. Lots of muscle pain. And really sore soles of both feet. Probably a short hold would be in order. But want to get off this stuff asap. The dilemma we all know too well...

 

Wishing you all ( old and new BB- folks) a pleasant day!

 

Trochsetter

[[Gi...]]

Hi LHSG-ers,

 

Hope you're all doing better today.

 

Just here to tell you I'm down to 1,2 mgs of Valium tonight. Never thought I'd make it this low...But have to add it's getting harder to do atm. Lots of muscle pain. And really sore soles of both feet. Probably a short hold would be in order. But want to get off this stuff asap. The dilemma we all know too well...

 

Wishing you all ( old and new BB- folks) a pleasant day!

 

Trochsetter

 

Great job Trochsetter.  You'll get there.  So many times I never thought I would make it, but I did and so will you.  Ginger