The Long Hold Support Group

[[Tr...]]

Thanks Shayna, wow I’m impressed with your old company and how they supported you. I wish all companies were like that. We are all human afterall. We women go through so much... Trina I like your plan A and B. And you are right that beautiful things can rise from the ashes. I work for corporate and it’s mostly men doing the boys club thing... they don’t care or get it and they can’t understand why I’m still sick. I’ve realised how transactional this environment is. When I was working crazy hours burning myself out they loved me. Now that I’m sick they have run out of patience for me. I’m tired of explaining myself and have to make a decision for myself. I had a meeting with our HR manager today and she is just as frustrated because she was busy with a work from home policy which has since been canned. I figure they will lose the few women Managers they have because we all now want to work flexibly and this rigid boys club old men environment is bad. On a positive note, I started my period today and I didn’t get any cramps! I was so worried I would have to take ibuprofen with being at work... normally I use a hot water bottle and lie in bed all day. I haven’t taken ibuprofen since withdrawal and I’m scared of it. So I gently spoke to my body and asked it to work with me today and... NO period cramps at the office and I’m now over the inflammation hump for this cycle! My body worked with me ladies... :-) Thank you for the support.

[[in...]]

I wanted to know if anyone could share how long it took you to feel asymptomatic (normal) when you decided to hold.  After 14 months of very symptomatic tapering I have decided to hold at 1.5mgs Valium per day.  I am encouraged by the fact I have started to have some periodic “windows” in the last couple of weeks when I feel totally normal.  I am willing to stop outlining when I will get off and just accept being patient. 

 

I am grateful for this thread which helps to dispel the idea of tolerance that makes us panic to push too fast to stop taking the benzo as another member kindly shared with me.  I am hoping to only resume tapering after I have had a break and feel more stable.  I would appreciate hearing how long it took for some of you to completely stabilize and really feel pretty normal during a hold.

 

Michael

[[...]]

I wanted to know if anyone could share how long it took you to feel asymptomatic (normal) when you decided to hold.  After 14 months of very symptomatic tapering I have decided to hold at 1.5mgs Valium per day.  I am encouraged by the fact I have started to have some periodic “windows” in the last couple of weeks when I feel totally normal.  I am willing to stop outlining when I will get off and just accept being patient. 

 

I am grateful for this thread which helps to dispel the idea of tolerance that makes us panic to push too fast to stop taking the benzo as another member kindly shared with me.  I am hoping to only resume tapering after I have had a break and feel more stable.  I would appreciate hearing how long it took for some of you to completely stabilize and really feel pretty normal during a hold.

 

Michael

 

Hi Michael, welcome aboard. I feel that this whole tolerance thing is a myth and has caused so many people to panic and make their situation worst by trying to "power" through their symptoms. Tolerance is the point where your gaba receptors have downregulated to the point where the benzo is no longer working and glutamate is unchecked. Once you start tapering you are going below that point so to say you can reach tolerance more than once doesn't make sense. That doesn't mean we can't be in tolerance while tapering but it's from the the first time we reached it not by holding for long periods of time. Withdrawal is when we are taking away what we've become physically and mentally dependent on. That is what you're experiencing when you start tapering. I held for 2 years at 1 mg to address health problems and all my symptoms went away in about a year. By holding you are allowing your brain to heal and your receptors to upregulate

[[Sh...]]

Woohoo Thanku universe for helping our sister out xxx u will make the right decision for u T2B x 

[[Ma...]]

I wanted to know if anyone could share how long it took you to feel asymptomatic (normal) when you decided to hold.  After 14 months of very symptomatic tapering I have decided to hold at 1.5mgs Valium per day.  I am encouraged by the fact I have started to have some periodic “windows” in the last couple of weeks when I feel totally normal.  I am willing to stop outlining when I will get off and just accept being patient. 

 

I am grateful for this thread which helps to dispel the idea of tolerance that makes us panic to push too fast to stop taking the benzo as another member kindly shared with me.  I am hoping to only resume tapering after I have had a break and feel more stable.  I would appreciate hearing how long it took for some of you to completely stabilize and really feel pretty normal during a hold.

 

Michael

 

That's great Michael!!  Enjoy those windows 

[[tr...]]

I'm going to start with the hormonal shift I have felt in the past 24 hrs   Started with the toxic sleep last night, and I woke with that benzo flu feeling. Other symptoms jacked up a bit. I also felt insanely hot but my temp was normal (whatever.....!!). Then I realized I hadn't counted out my days on the calendar yet and you guessed it - I'm a couple days away. So far I don't feel emotionally wacked out..

 

Old boys clubs  - ugh. And this is the year they have got to be wayyy more flexible.Aside from paying the bills it doesn't sound like this is the best enviro for you. 

[[Me...]]

Ladies, please help me.  I'm a day away from my period and I'm hoping that's the reason I was so anxious that I didn't sleep last night.  I'm 3 months in and felt like I was starting to turn a corner the past few days, but last night...  I truly thought I was back in acute for a lot of it.  I'm scared, y'all.  I don't want to go to bed tonight and be left alone with all this panic.  Everything I think about: taking care of my toddlers the next day, taking my daughter to school, not sleeping, sleeping, seriously anything brings on this intense surge of anxiety from my gut up through my chest and body.  I feel so helpless and I'm in such despair today.  I could do this if it weren't for the anxiety.  I could deal with the leftover symptoms.  So scared they're permanent or something is really wrong with me.  I don't know how to do this.  :'(

[[tr...]]

Melanie...I'm so sorry...those early months are def rough. And I think all of us can say our monthly has made us feel back in acute many times.

The rebound anxiety is a tough one. And then add parenting. You're not alone. At 3 months I didn't think I'd make it to 8 months yet here I am.

Day by day..sometimes moment by moment.

 

Do you have a partner/spouse, or any help?

[[Sh...]]

Sorry girls UTI, are there any safe antibiotics we can take? Sorry Melanie x just an emergency

[[be...]]

Oh no...a UTI!!  :'( Everyone reacts differently to every antibiotic. I did well with macrobid and amoxicillin for my UTI in July. I had a horrible reaction to Bactrim. No matter what, no quinolones (cipro or levaquin)!!

 

Feel better, Shayna!

[[Sh...]]

Thanks beauty! Ur the best! Xx

[[ki...]]

Shayna, avoid fluroquinolone antibiotics, they cause a CT-like reaction in those who are taking benzos. I’ve used Macrobid (nitrofurantoin) for the last two UTIs I’ve had and it worked perfectly.

[[Tr...]]

Shayna good luck with clearing the UTI, no Cipro I agree..Melanie, we go through what you have explained every time we are on our periods, it then slowly disappears and you will get relief and be back at your baseline again. It’s difficult but you can do this... I’m going through it myself, I was up since 3am, twitching in my brain till I cried, cortisol rushes. I also started thinking maybe it’s permanent so you really aren’t alone.... Trina, hold on tight... it’s gonna get bumpy but you know the drill... the day we all heal I’ll be so happy! Damn these meds.

[[Sh...]]

Thanks girls!!! Appreciate ur help x

[[Ma...]]

Trishy, just had blood work and voted.  Now waiting to hear about your appointment girlfriend, love and thinking about you!  Mary 🙋🏼🙋🏼🙏🙏😘😘😷😷😷😷😷.  ♥️

[[Tr...]]

Please advise what supplements you ladies are taking?

[[ki...]]

I don’t take anything. I’m too scared to cause a setback.

[[Sc...]]

Holly molly. Just a quick update. Had the dreaded appointment with doc & told all my symptoms & he said they sound like anxiety & therapy only thing could help, doesn't recommend tapering right now.😮Feeling grateful.

Thanks for all who've given feedback & kept me in your thoughts.

Hi to all of you lovely people. Sorry for all I've missed. Healing thoughts for all struggling.

I've decided to hold untill I get through multiple medical appointments marathon.

 

The way I crossed from all k to part x, & the changes I've been through, makes me wonder...

Am I kindled? Damaged?

Well wishes to all X ❤️🌈

 

[[ki...]]

Scaredie, I am so glad your doctor is on board with holding! That must be a huge relief. Therapy can be very helpful, a good therapist is worth their weight in gold. ❤️ I think you will start to feel better with the combination of a long hold and therapy. Please try not to worry about kindling or long term damage, this group in particular exists because long holds HELP. You are giving yourself time to heal and stabilize.

[[Tr...]]

Trishy, just had blood work and voted.  Now waiting to hear about your appointment girlfriend, love and thinking about you!  Mary 🙋🏼🙋🏼🙏🙏😘😘😷😷😷😷😷.  ♥️

Hey girlfriend! Yay, get that all important vote in! 🌊 My appt went very well. The ENT Dr was just adorable. She reminded me of my daughter. Actually if I had another son I would want him to meet her lol! So she scoped me 😳 it wasn't all that bad but she put the scope down my nose and into my throat. She said it all looked great and she showed me on a TV screen after she did it. She couldn't feel the swelling in my neck but I myself think it's gone way down since I first noticed it. She said the clicking sensation I'm feeling sounds like cartilage rubbing or something like that. She said I wasn't the first person to ever complain of this and she has sent people for MRI's and they always come back showing nothing. She also said she could order an ultra sound of my throat if it would make me feel better. I told her that I'll wait a couple more weeks and if it's driving me crazy I'll come back and she agreed that was a good plan. So she thinks I'm just fine nothing serious.

So I do feel better after having seen her. I really liked her and she was very easy to talk too and gave me all the time I needed. I will stick with her for an ENT Dr.

TT, 😷💞💞💞💞

[[Ma...]]

Trishy, just had blood work and voted.  Now waiting to hear about your appointment girlfriend, love and thinking about you!  Mary 🙋🏼🙋🏼🙏🙏😘😘😷😷😷😷😷.  ♥️

Hey girlfriend! Yay, get that all important vote in! 🌊 My appt went very well. The ENT Dr was just adorable. She reminded me of my daughter. Actually if I had another son I would want him to meet her lol! So she scoped me 😳 it wasn't all that bad but she put the scope down my nose and into my throat. She said it all looked great and she showed me on a TV screen after she did it. She couldn't feel the swelling in my neck but I myself think it's gone way down since I first noticed it. She said the clicking sensation I'm feeling sounds like cartilage rubbing or something like that. She said I wasn't the first person to ever complain of this and she has sent people for MRI's and they always come back showing nothing. She also said she could order an ultra sound of my throat if it would make me feel better. I told her that I'll wait a couple more weeks and if it's driving me crazy I'll come back and she agreed that was a good plan. So she thinks I'm just fine nothing serious.

So I do feel better after having seen her. I really liked her and she was very easy to talk too and gave me all the time I needed. I will stick with her for an ENT Dr.

TT, 😷💞💞💞💞

 

I am so glad Trishy, now maybe you can take a big breath.  You have had too many things to worry about.  Rest.  Ireland, I just heard on the news is locking down again, except for schools.  I know Stut hates it , but I don't know what would have happened here in San Antonio, if we hadn't locked down.

I drove by a couple schools today and to me, there were way too many cars in the parking lot, and that wasn't the middle age kids that go there.  .  At least Ireland has a plan, our states are exploding and our nation certainly has no plan.      Enough bitching, hey Lilgma is on Below 3 mgs, and all her grandkids are being tested.  I bet she would like having someone to commiserate with.  Love ya TT, Mary 🙋🏼🙋🏼🙋🏼😘😘😘🙏🙏😷😷😷😷😷

[[Me...]]

Trina - Your replies are always so comforting; thank you!  8 months, wow!  What an accomplishment!  I can't even imagine 8 months at this point.

 

As far as the kids, my husband is a big help when he's off work, but he works long hours, so it's tough on those days. My mom has been living with us since this setback started, so I do have her help.  Still, it's been so hard.  I don't feel like I've been a good mom to them because I can't be as attentive and loving as I want to be, and we don't go out to many places because I'm worried about reacting to cleaning products, getting covid or other illnesses, etc.  Some days I'm thankful for the distraction they create, but most of the time, it's utter chaos here and I'm just trying to hold on.  I used to do this by myself with no problem when hubs was working and I miss the strength I had then.  The kids have gotten way more unruly the past 3 months and I know it's because of the stress level of everything going on and inconsistencies in discipline.

 

Thanks for listening to me ramble...  I love that we have a place to talk about kids and Aunt Flo woes.

[[Me...]]

Shayna,

 

I don't know if it's safe in WD (maybe poll the group or do a search?), but my mom has had major success with D-Mannose powder, which is the active ingredient in cranberries that make them so beneficial for UTIs.  She uses a product called UT Vibrance that can be found on Amazon and occasionally in health food stores.  It's knocked out several active UTIs for her.   

[[Tr...]]

Trishy, just had blood work and voted.  Now waiting to hear about your appointment girlfriend, love and thinking about you!  Mary 🙋🏼🙋🏼🙏🙏😘😘😷😷😷😷😷.  ♥️

Hey girlfriend! Yay, get that all important vote in! 🌊 My appt went very well. The ENT Dr was just adorable. She reminded me of my daughter. Actually if I had another son I would want him to meet her lol! So she scoped me 😳 it wasn't all that bad but she put the scope down my nose and into my throat. She said it all looked great and she showed me on a TV screen after she did it. She couldn't feel the swelling in my neck but I myself think it's gone way down since I first noticed it. She said the clicking sensation I'm feeling sounds like cartilage rubbing or something like that. She said I wasn't the first person to ever complain of this and she has sent people for MRI's and they always come back showing nothing. She also said she could order an ultra sound of my throat if it would make me feel better. I told her that I'll wait a couple more weeks and if it's driving me crazy I'll come back and she agreed that was a good plan. So she thinks I'm just fine nothing serious.

So I do feel better after having seen her. I really liked her and she was very easy to talk too and gave me all the time I needed. I will stick with her for an ENT Dr.

TT, 😷💞💞💞💞

 

I am so glad Trishy, now maybe you can take a big breath.  You have had too many things to worry about.  Rest.  Ireland, I just heard on the news is locking down again, except for schools.  I know Stut hates it , but I don't know what would have happened here in San Antonio, if we hadn't locked down.

I drove by a couple schools today and to me, there were way too many cars in the parking lot, and that wasn't the middle age kids that go there.  .  At least Ireland has a plan, our states are exploding and our nation certainly has no plan.      Enough bitching, hey Lilgma is on Below 3 mgs, and all her grandkids are being tested.  I bet she would like having someone to commiserate with.  Love ya TT, Mary 🙋🏼🙋🏼🙋🏼😘😘😘🙏🙏😷😷😷😷😷

I must say I am relieved 😌

I heard about Ireland locking down. Stut mentioned it last time she posted here. I hope she's doing ok 🙏

And you're right our country is exploding with cases! Did you see that they said within a week we are going to accelerate in cases 😳😷 I'm terrified! I start babysitting Monday. The only thing I can do is wear a mask while I watch him and I will. I will disinfect everyday and open windows periodically throughout the day no matter what the temperature. I bought a Z shield to that I saw on tv. It looks like an upside down shield you wear around your neck. That way the baby won't get hurt on any rough edges as he might from a regular one. I will wear that most of the time so he can see my mouth move when I talk to him. It's so important for him to see that for language development. When I have to hold him up close I'll just wear a mask and no shield. It's going to be very challenging for sure.

The schools Mary I think will eventually close. If we are in for what they think we are i don't see how they can possibly stay open.. But we shall see.

Love ya girlfriend!

😘💞💞💞💞💞

[[Me...]]

Trying2B, no supplements here, either...  I'm afraid they'll cause symptoms spikes.  Trying to get everything I need through food at the moment.

 

Thank you so much for your post.  I hate that y'all are experiencing the return of so many symptoms, too, but if we must be in misery, I'm thankful we have each other to lean on.  Have you found that the intensity of symptoms before/during your period has lessened with time?