The Long Hold Support Group

[[Ma...]]

Lololol mary I see you found my post!! We are playing post tag here!  :laugh:

 

    You're it  :smitten:

[[Tr...]]

Hi Mary,

 

Hope you're doing better.

 

Thanks for posting about the vaccine shot going so well. I'm still unsure to take it or not. Mine isn't due for quite a while anyway,  so there’s time to think. I'll keep watching this space to find out how others are doing after their vaccinations.

 

Trochsetter

[[Tr...]]

Hello my people,

Hope everyone is hanging in there..I hope you all remember me seeing I'm not much on here these days.

Shout out to Vnm, Ginger, Gp, Olive, final, memes, DD, Jasmine, kit, jwl,torch.. and if I've forgotten to mention you here it's not bc I've "forgotten you" it just means my brain has misplaced your name in my head!  :laugh:

I miss all of you and I hope you're all doing well.

Lots of love,

Trishy❤️❤️

Ps Twinny you're always on my mind hope you're doing alright and healing quickly! Love you, LST ❤️

 

Mary I've pm'd you about my 💉 miss you as well but you already know that lol!! 😘

 

 

[[Th...]]

I was wondering if I could get some help. I had to reinstate after 19 months because I had 3 months of over 100 symptoms and hospitalized. I have never stabilized fully I am 45. My periods have been erratic or a year and the week to two weeks after my period are unreal. I have cramps all the time mostly all month they think menapause I think after 17 years my endometriosis is back too. I am extremely sensitive to everything. I’m a single mom and work a lot. My last period a month ago was clack snot like stuff and spotting and that’s it then a day after I got off ended up in ER so sick and have been very sick since like a month of really bad symptoms. On the months I skip a period like January I am great. Would menopause cause daily cramping and if my hormones are whacked what can I naturally use that won’t make me even sicker.

[[Tr...]]

Hi Trish,

 

Nice to hear from you again.

 

Hope you're doing OK.

 

Stay safe!

 

TS

[[Ol...]]

Hello my people,

Hope everyone is hanging in there..I hope you all remember me seeing I'm not much on here these days.

Shout out to Vnm, Ginger, Gp, Olive, final, memes, DD, Jasmine, kit, jwl,torch.. and if I've forgotten to mention you here it's not bc I've "forgotten you" it just means my brain has misplaced your name in my head!  :laugh:

I miss all of you and I hope you're all doing well.

Lots of love,

Trishy❤️❤️

Ps Twinny you're always on my mind hope you're doing alright and healing quickly! Love you, LST ❤️

 

Mary I've pm'd you about my 💉 miss you as well but you already know that lol!! 😘

 

Hi Trishy! Hi Mary! Thanks for the lovely hellos. I don't always post but I usually catch up during breakfast at least a few times a week.

 

Just got back from another dental visit. This this is dragging out!!! My next crown is not until May, so I can breathe easy for a couple of months now.

 

Hang in there everyone! We are getting through it.

[[4G...]]

Hello OliveKitty, I'm glad that your dental work went okay and that you don't need to go back to the dentist for a good while.

 

Hello Trishy! How did your vaccination go? Dave got his appointment for next week. I haven't got mine yet and I don't know what to do. The psychiatrist told my doctor to take me off Valium. Psych said to take me off it by 1mg per week! I talked to the doctor and she agreed to 1mg per month instead. Luckily they thought I was on 6mg when I was on 4mg, so she thinks I've come down from 6mg already and is pleased with me. The truth is that I've come down to 3.5mg from 4mg! Now I am just starting to come down to 3mg. So then I should be about right with the doctor. But I can't do it at that speed. Fortunately, I have a stock of about 260mg of Valium, so I can take it more slowly. However, I am very anxious and I don't know if I'm going to be able to go for my Covid jab. They are doing them in a gym near here. Dave says he will take me but I don't know what to do. He says that it shouldn't really matter because I don't see anyone anyway, so it is unlikely that I will catch it. But I would like to get it out of the way. I am in a bit of a mess to be honest.

 

*Mary, obviously you can also read that so you know what's going on.

 

Trishy, I'm so pleased that your dil is giving your son another chance. Let's hope he doesn't mess it up. I'm sure it's incredibly hard for him, but the ball is in his court now.

 

I'm glad you're looking after the baby, as long as it doesn't get too much for you. Look after yourself, Blackpool Betty. xxxx

 

Hi Mary, you will have read the piece up there and so know what's going on re the vaccination. I am a nervous wreck coming off the Valium. I keep staying in bed because Dave can be quite nasty about things. His parents have moved up here and now he has them it doesn't seem to matter that he is nice with me. He has been okay all the time we've been in lockdown. I have no family here and so I'm very much on my own.

I hope your vaccination went well and that you are feeling as well as possible. xxx

 

Stut, Keep on going if that's what you feel best doing! xxx

 

Love to anyone who knows me!

 

[[Ma...]]

Hello OliveKitty, I'm glad that your dental work went okay and that you don't need to go back to the dentist for a good while.

 

Hello Trishy! How did your vaccination go? Dave got his appointment for next week. I haven't got mine yet and I don't know what to do. The psychiatrist told my doctor to take me off Valium. Psych said to take me off it by 1mg per week! I talked to the doctor and she agreed to 1mg per month instead. Luckily they thought I was on 6mg when I was on 4mg, so she thinks I've come down from 6mg already and is pleased with me. The truth is that I've come down to 3.5mg from 4mg! Now I am just starting to come down to 3mg. So then I should be about right with the doctor. But I can't do it at that speed. Fortunately, I have a stock of about 260mg of Valium, so I can take it more slowly. However, I am very anxious and I don't know if I'm going to be able to go for my Covid jab. They are doing them in a gym near here. Dave says he will take me but I don't know what to do. He says that it shouldn't really matter because I don't see anyone anyway, so it is unlikely that I will catch it. But I would like to get it out of the way. I am in a bit of a mess to be honest.

 

*Mary, obviously you can also read that so you know what's going on.

 

Trishy, I'm so pleased that your dil is giving your son another chance. Let's hope he doesn't mess it up. I'm sure it's incredibly hard for him, but the ball is in his court now.

 

I'm glad you're looking after the baby, as long as it doesn't get too much for you. Look after yourself, Blackpool Betty. xxxx

 

Hi Mary, you will have read the piece up there and so know what's going on re the vaccination. I am a nervous wreck coming off the Valium. I keep staying in bed because Dave can be quite nasty about things. His parents have moved up here and now he has them it doesn't seem to matter that he is nice with me. He has been okay all the time we've been in lockdown. I have no family here and so I'm very much on my own.

I hope your vaccination went well and that you are feeling as well as possible. xxx

 

Stut, Keep on going if that's what you feel best doing! xxx

 

Love to anyone who knows me!

 

I was very anxious too English, so I kept following the vaccine threads under General Health.  I think you should go.  Believe me, you won't be the only nervous person there.  So go stick that arm out and get that shot.  I had a little bit of a sore arm, that was it.  Trishy just had hers, she had a couple hours of chills, which is perfectly common.  Tim nor Rich had any symptoms but a little sore arm.  Please go.  This virus is just too dangerous not to take it.  I wish Dave would treat you better 

Please pet that wonderful Tilly for me.  My governor is opening our whole state back up next Wednesday  :tickedoff:  We are one of the worse states in the US.  Biden called it Neanderthal thinking and he is a mini Trump, he sucks.  So I am grateful Tim and I at least have one shot, a lot of people don't  .  Oh to have a governor that cares about the people.  He was very involved in the winter storm disaster too.  >. Okay, enough venting, you go get your shot okay.

You will be so relieved when you do it.  Love ya girlfriend!    :smitten:    🐱💕❣️♥️💋

[[Ma...]]

Hello my people,

Hope everyone is hanging in there..I hope you all remember me seeing I'm not much on here these days.

Shout out to Vnm, Ginger, Gp, Olive, final, memes, DD, Jasmine, kit, jwl,torch.. and if I've forgotten to mention you here it's not bc I've "forgotten you" it just means my brain has misplaced your name in my head!  :laugh:

I miss all of you and I hope you're all doing well.

Lots of love,

Trishy❤️❤️

Ps Twinny you're always on my mind hope you're doing alright and healing quickly! Love you, LST ❤️

 

Mary I've pm'd you about my 💉 miss you as well but you already know that lol!! 😘

 

Hi Trishy! Hi Mary! Thanks for the lovely hellos. I don't always post but I usually catch up during breakfast at least a few times a week.

 

Just got back from another dental visit. This this is dragging out!!! My next crown is not until May, so I can breathe easy for a couple of months now.

 

Hang in there everyone! We are getting through it.

 

Hey OK, always good to see a post from you.  Glad you have a break in between dental visits, I need to go, and after I get my second shot, might try to find a dentist that's been vaccinated too.  I know I need a good cleaning  .  LY, take care of yourself!!    :smitten:

[[ho...]]

I’m wanting to start on birth control because I have been getting severely depressed and shaky before and during my period. I’m 3 1/2 years off. I got covid and that threw me for a horrible horrible loop. Before covid I could manage my wd symptoms. But now they are so severe, especially now. Would it be worth a shot to try the pill? I’m very very desperate for relief from this. My period was typically regular before this. Now I’ve been bleeding for 2 1/2 weeks, stop, then get my actual period a week later. It’s so horrific. Wondering if I could benefit from birth control. I suppose it’s trial and error for everyone??

[[Tr...]]

Hi Hopeful101, You mention you are 3.5 years off, is the shakiness something that’s recently started or have you always had it? If it’s something recently started I’d wait it out.... It may take a few months but it will settle. We have all had weird cycles and it eventually evens out.

 

The addictionfairy, so sorry to hear you are back in the throes of withdrawal again. When I used to work a lot it made my symptoms worse and I found reducing my work load and stress helped. I dont think there is a magic fix but hopefully some of the other ladies will chip in. Time and patience are your best friend.

[[Ol...]]

HI Gilly! Hi Mary! Hi Trishy! Hi Stut!

Gilly sorry about your doctor, that stinks! The one saving grace in all of my benzo disaster was that I found a Dr who totally got it, and was willing to keep prescribing and let me dictate my own taper. Angels on Earth, these Dr's are! Yes, listen to Mary, go get your Fauci Ouchie! You will probably feel so much more relieved in general. I can't wait to get mine!

Love to everyone 

[[Fr...]]

Hi All-

Has anyone lost their period in this? I have not had one for a full year. Menopause at 43 seems crazy. I have been tapering slowly over two years and have 3mg left. Will probably taper that over another year or more. I do enjoy not having the hormone fluctuations make symptoms worse but usually after my period I will feel decent for two weeks. Now I just feel yucky all the time.

 

 

[[4G...]]

Hey OliveKitty! I hope you can get your jab soon if that's what you want. The biggest problem with me really is that I have bad agoraphobia. My bf says he will take me to get it - he is having his soon but I haven't got an appointment yet. If I have it then it might give me a bit of a reason to use with my doctor for giving me the same amount of V for another month instead of cutting it. You know, if I happened to feel a bit dodgy after the jab, if you catch my drift....

 

Will write more if I get some news and will keep my eye out for you hearing about your jab.

 

Take good care of yourself!  Gxxx

[[ar...]]

Hello

I’m just desperately looking for hope that a severe case such as myself can attain stability by doing a very very long hold?

 

I’ve been in this nearly 4 years after I was cold stopped off my ssri escitalopram and pregabalin not knowing any better, and I have never recovered since. I’ve had chronic and severe akathisia since and so much more and completely housebound sick as.

 

Benzos came along as a result of those CTs and the severity of the akathisia.

 

I’m now 28 months holding on the same dose of Klonopin as o had to taper some of the paradoxical reinstated ssri for two years, this made me so much worse and I stopped that tapering 10.5 months ago.

 

By end of September I was finally starting to get what I call glimmers of the severity coming down. So I kept holding. Given my severity, things became generally more tolerable in the Autumn months up til mid-late January this year when I feel into the worst state I’ve been in since before Klonopin (after the cold turkeys). I’m absolutely terrified clinging onto my bed in severe akathisia, terror and mental symptoms all day everyday since the crash,

 

I need to know that continuing to hold can get me back to seeing some improvements again. I don’t know what went wrong or if this is normal for such a severe case and in a long hold.

 

I know the focus here is benzos but ssri wd cannot be underestimated. Do you think by continuing to hold it is possible to gain stability so that I can then taper in less life threatening akathisia?

 

I will hold as long as it takes if this can happen.

 

However, I absolutely hate the Klonopin and have often had adverse reactions on dosing right fronthe get go. But when my cns became less frantic end of last year, the benzo seemed to be more predictable too.

 

I am 99% non functional. I had got to maybe 15% functional late last year and had hopes my hold was going to bring more stability with longer holding.

 

Thanks, AP

[[tr...]]

Hi All-

Has anyone lost their period in this? I have not had one for a full year. Menopause at 43 seems crazy. I have been tapering slowly over two years and have 3mg left. Will probably taper that over another year or more. I do enjoy not having the hormone fluctuations make symptoms worse but usually after my period I will feel decent for two weeks. Now I just feel yucky all the time.

 

I have not lost my period in all this but I have read of many who did. And for many it returned. We all get affected differently with this in regards to cycles. Mine have stayed pretty regular, but the intensity of flow changed, or the duration(how many days) of my period has flip flopped. Its not levelled out yet - but I am 45 so we'll see I guess.

 

I'm just glad I only feel a bit low during it and feeling "psychotic" seems to have left. Although last period i did have one day near the end where a wave of depression hit for like 5 hrs and lifted - I mean, really?!!! No rhyme or reason to some of this I swear lol.

 

So update for my friends on here...I've been very lucky to book my work shifts around my menses, but this month I literally cannot. So here will be the true test of managing work while feeling crappy. I know I'll live...I may just work and come home to only drop on my couch lol.

"I can do this...I can do this...." 

[[Ol...]]

Hey OliveKitty! I hope you can get your jab soon if that's what you want. The biggest problem with me really is that I have bad agoraphobia. My bf says he will take me to get it - he is having his soon but I haven't got an appointment yet. If I have it then it might give me a bit of a reason to use with my doctor for giving me the same amount of V for another month instead of cutting it. You know, if I happened to feel a bit dodgy after the jab, if you catch my drift....

 

Will write more if I get some news and will keep my eye out for you hearing about your jab.

 

Take good care of yourself!  Gxxx

 

Hey Gilly,

I hear ya. For sure. There was a time when I could not walk around my own block, I can't even imagine feeling like that and having to go get a vaccine, which seems to involve waiting in line at convention centers or whatnot. I totally understand that fear. And then the fear of putting another foreign substance in your body, oh yes, I know. My doctor recently offered me a tetanus shot and I was like, NO WAY. But I will get the covid vaccine when my turn comes even though it seem scary for sure. (But I no longer have agoraphobia so I can completely understand why it is a conundrum for you) Keep us updated, and much love to you.

[[4G...]]

ArtistPrayer, I don't know what to say to you. Only think that holding for longer shouldn't do any harm. I am in a bad way myself and send you so much sympathy. xxx

[[Tr...]]

Jlavoght, I too haven’t lost my period, although I did skip a whole month recently. And just like Trina, the duration and intensity of the flow changed. It feels like my body is still working to stabilize my cycles... For many months, my withdrawal symptoms would increase in intensity during my period, it was horrible. The good news is that my last 2 cycles have not ramped up the symptoms, it’s been so good to just have normal emotions during that time...

 

Trina, yes you can do this... and if you feel like it’s too much, you can call in sick. But I think being at work will be distraction enough that you will flow through the symptoms... Think of that kid who panics that he is going to drown only to realise he is standing in shallow waters... :-)

[[ki...]]

Trina, you are such an inspiration to me and many others. You are out there living life while you’re healing. You’ve got this! ❤️❤️

 

Jlavo, I haven’t lost my period either, but there’s been a fair amount of variation in cycle length (25-35 days, usually falling somewhere in between) and symptoms ramping up around ovulation and the start of my period. It’s different for us all, but we all know intimately that benzos mess with our hormones.

[[tr...]]

... Think of that kid who panics that he is going to drown only to realise he is standing in shallow waters... :-)

 

Whoa..ok that was profound.

 

 

so i got through the work days fairly well. More bathroom breaks than I really want...

But this was my first period with no nightmares in my sleep!

Guys this is  life changing ....

[Guest [fl...]]

Amazing! This gives me hope! Trembling at the thought of mine and it’s over a week away!

[[Be...]]

Hey ladies,

 

So I just got my period. Ghastly wave before hand with horrid anxiety, impending doom, panic, waking up at 4am. Completely illogical fear. Felt like if lost my mind. Thus morning I got a couple of minutes of normalcy.  I’m 48 & so peri menopausal to boot.  I’m 14 months since jumping. Any reassurance & encouragement would be very welcome right now. 

 

Thanks so much

[Guest [fl...]]

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?

[Guest [fl...]]

I thought I should add a short explanation of thyroid hormone. Active thyroid hormone is essential for brain health. T3 is a gaba reputable inhibitor. Being female and over 35 means T3 is usually in the lower half of the normal range. Progesterone boosts T3. So to add insult to injury, low T3 means less progesterone, less progesterone means less T3, and falling progesterone means less T3 and less allopregnanolone. It’s a perfect storm of unhappiness. Add to that falling estrogen. Estrogen helps us make serotonin which also helps us make gaba!

 

The brain is sdeisgned to air adjustments with the cycle, but certain things make it harder, like low /low normal T3. This tendency can also be genetic / epigenetic.

 

Just food for thought.