The Long Hold Support Group

[[Tr...]]

Good morning Trish glad to see you out and about enjoying yourself sweetheart.That is definitely more like you.Now it really is up to you if you go to the specialist however he has no idea how benzo withdrawal affects people so he will looking purely from the heart perspective so he may diagnose POTs which l would have to say is not correct.Just thinking out loud honey l just want to say that could happen doesn't mean it is indeed POTs.

  Good luck at the doctors today and enjoy the day with your grandkids GRANNY 😂. love you my lST X

Hey tiny Irish woman! How goes it in the emerald isle? Not feeling too good yet huh? I do hope you start feeling better soon twin    I'm glad your daughter will be around to give you a hand. Viruses, flu ugh! I really feel for you,  I went through hell last fall and winter with colds and viruses. I think we're just immune compromised bc of the tapering.

I'm re thinking the specialist. I'm still slightly symptomatic so I don't know if I should just go and hear what he had to say or not.. I'm on the fence about it

And yes tiny lady I am a granny but I sure ain't looking like one and that's why they call me MEME  :laugh:

Love you little woman 

LST :smitten:

[[De...]]

Do.you guys think.this new teva could csuse a set back. I get thesr tight cramps in.my thighs and really bad tops of thigh area snd left hip. My mucles felt ok.  Now this teva is going to destroy them. This is making me crazy. I know how bad you all are suffering too. I shouldn't even complain.  You get rid of some sx and then here comes another. I feel so damaged. That is cuteb8ntend youbwere talking to little pepper..lol. I alwsys talk to my cat. She seems to understand me too.

[[Tr...]]

Hey Mary, I went to the gyno this morning as you know and what a conversation we had. I hadn't seen him in a few years and he asked me what had been going on the last few years and we got to talking about everything! He's a doll I love this guy. We talked about my former Dr and how he practically kicked me off Xanax. So long story short he admitted to me that he himself was GUILTY! Guilty of putting patients on xanax! He said and I don't want to take them off as in " he didn't know how"!! I was shocked! He agreed that my then Dr should have worked with me and that he did agree it should be done very slowly. I told him how former Dr was almost cruel to me about it and I didn't understand why and that I had only don't as he advised for all those years and my gyno said my former Dr behaved that way toward me bc he felt GUILTY and knew he was wrong to have kept me on all those years and he was directing his guilt and anger that he felt for himself and putting it on me. You cannot imagine how good it felt to be validated in my feelings about what happened by another Dr! And to admit that he himself has patients on them and doesn't want to take them off!! Now my gyno is getting near retirement and he's probably one of the nicest Drs I've ever met. He's kind, soft spoken and easy to talk too but I was very surprised that he admitted to putting patients on xanax as well. I should add that he also said years ago this drug was thought of as a wonder drug for anxiety and that Drs just wanted to help that they didn't know H ad to tell you that!

I also had a great day with the kids. We all went to lunch and then took the kiddies to the farm. They had a blast it was a beautiful day 🙂

I'm not caught up here so I hope everyone is doing ok 🤞

TT, TOO MANY T'S TRISH ♥️😁

 

Hey Too Many T's.  Glad you had such a good day.  I think what your Dr said is very true for most Dr's, they didn't mean to hurt us, but how they handled it, once they did know, showed their morality and what type of person they really were.  I like my gynecologist too, but she is a lady, probably 10 years younger than me.  She delivers so many babies, I usually end up with her NP, but that's okay, I like her too.  I am so glad you are feeling well enough to get out and do stuff again, love ya, MM 💜💜💜

I agree MM it's how they are handling it that sucks and is just plain inhumane.. Criminal really.

It was great to be outside most of the day and on a beautiful farm with such a gorgeous view. The leaves are and have been turning for weeks now and the leaves are really starting to pop with color. I just love this time of year. Glad I'm not sick atm.. But I'm back in the trenches Nov 1 

Good luck with your upcoming appts girl.

Love ya mm,

TT, Too many T's Trish :smitten:

[[Ma...]]

Do.you guys think.this new teva could csuse a set back. I get thesr tight cramps in.my thighs and really bad tops of thigh area snd left hip. My mucles felt ok.  Now this teva is going to destroy them. This is making me crazy. I know how bad you all are suffering too. I shouldn't even complain.  You get rid of some sx and then here comes another. I feel so damaged. That is cuteb8ntend youbwere talking to little pepper..lol. I alwsys talk to my cat. She seems to understand me too.

 

It could be DD.  So many people are having all kinds of problems with all the generic Ks being switched.  I am so sorry your muscles are acting up again.  I feel your pain.  Can you stretch and exercise lightly or are you hurting too bad?

[[Tr...]]

Good night buddies hoping all here have a restful night :smitten:

Over and out,

TT

[[Ol...]]

Hello all lovelies in this group.  I joined a Facebook group and I think it’s ok but just from the week in this group I feel so safe.  I’ve been a little triggered on that  FB group cause there is ALOT of CT’s.  I did one a year ago and had two seizures.  I am in a long hold and not seeing much of that.  So I thought I love my new group here even though I don’t know you guys yet. 

Aside from the weird FB group And going to bed way too late last night and waking up feeling like shit, I’m in a window.  Body is feeling ok.  Enjoy it, right?  This too shall pass.  F it, I’m enjoying it. 

~meems

 

Hi Meems and welcome! I am on the Benzo Recovery fb group and I agree, it is weird! People seem a bit less informed and overall the group feels really dramatic, it can give me anxiety just looking at it! I have notifications turned off for that group otherwise it would invade my fb experience. I like benzo buddies so so much better. Better feed those kitties now or they'll meow your head off!

 

[[Me...]]

Hi Olive, yes I think I should turn off notifications for the group.  It’s kind of triggering.  Yes those kitties 🐱 had their dinner. 

Mary, I looked for Valiums Propoganda and couldn’t find it.  I went back to August.  Ahh well. 

[[De...]]

Hi mm,

I think i am going to do some light exercise and stretching tomorrow. Its ok. It will pass. Benzos 

[[In...]]

Good morning Intend l am sorry to hear about Dan's friend l am sure it has upset you both.l know you have so much responsibility and this taper is causing you a lot of problems.It is worrying and l understand that completely.l think a 3 month hold is not going to help much and l found l did and do get worse up until about 5 months.Sadly l do think you and l seem to be very similar in the way withdrawal affects us.l actually feel better when l cut then when l hold l feel like crap.Awe well we just have to try our best honey.

  I totally agree with you BB has changed and not for the better.l thought it was just my imagination however l do see a lot of people saying it.A lot of nitpicking and aggression raising it's head sometimes l would go as far as to say bullying.Not something l want to witness on a support forum.l actually thought when l saw all the newbies joining BB from the Lisa Ling program god help them coming here.l wouldn't be here other than the lovely people l have met here who l care so much about.Incase you don't know your one of them.😘.

I don't think l will go to the joker movie l am not a fan of that actor l loved the dark Knight one of my favourite movies.

  Thinking of you and love to you and Dan.X

 

Stut,

 

I’m posting quite late, but I’m sure you and everyone else will see this.

 

I had to call the county treasurer today, so I checked my voice on little Pepper, and by golly, she understood me very well. It’s a local call, so that helps. I’m still working on those insurance papers, but that could be much more difficult because they are long distance calls, and with Dans insurance, they speak English very clearly and are located in the United States, but mine is different because one could end up with someone in another country who does not speak English at all.

 

I do agree with you that these long holds do not help me much if at all as they don’t help you either. And then I have this complication of all these generic switches. But I’ve always had trouble with clonazepam. I can remember when I first crossed over to it, and the psychiatrist said at the time, “your voice sounds very different since I last saw you.” I told her that it was the clonazepam, and she just looked at me and shrugged.

 

So now I’m on day 85 of my 3 month hold, and my voice is not good, but since I was able to make that call today, I will most likely finish it. And then start tapering again. About 3 years ago (I think it was 3 years), I printed off all the side effects from the Mayo Clinic that clonazepam had, and it’s a long list. I have many of those side effects just from taking clonazepam with out tapering.

 

And I also printed off all the withdrawl effects of withdrawing from any benzo from Baylissa.com. So I’ve had all these side effects and withdrawals effects when I’ve tried to taper. This is no “fun” and it makes it hard to even tolerate clonazepam for me tapering or holding. I’ve known others like this. The benzo that they were prescribed just made them sick from almost the moment they took it, and then withdrawl was worse.

 

Every drug has side effects and pretty much withdrawl effects. Usually benzos are well tolerated, but benzos as a class of drugs, are not necessarily tolerated individually. So while I tolerated alprazolam w/o problems, clonazepam has been hard on me. I’m just hoping that as I taper down, more receptors will up regulate, and I will feel better. 

 

And glutamate itself has receptors that will “reach out” and pull back the glutamate in the brain (which causes our unpleasant sx), so that’s why we must go so slow. We must let those glutamate receptors pull back the glutamate as they can handle a small amount with small, slow cuts, but a too big cut will flood the brain with too much glutamate and cause a lot of distress. I think about this often, and since everyone is different, a small cut to someone may be too large for someone else and vice versa.

 

Yes, it does look like BB has changed. I’ve belonged to this forum for years, and I’ve never seen the way some act on Chewing the Fat and Benzos in the News. It’s a clique over there it seems with certain people posting all the time, and anyone who isn’t a member of that exclusive clique seems to be snubbed. That is my opinion only, but it does upset me when I think I’ve been a member for years.

 

I do like Joaquin Phoenix. He’s had a difficult life himself. From what I’ve read, his parents traveled quite a bit and raised their children in a sort of “hippie lifestyle” and joined a cult.  When he was a child he went by the name of Leaf Phoenix and was in that movie “Parenthood” with Steve Martin and Mary Steenburgen. His brother was River Phoenix, and he has another brother, Liberty, and sisters Rain and Summer. He was the only one of the 5 who was born in Puerto Rico and thus was named Joaquin. And his one and only girlfriend that I know of is Rooney Mara.

 

We both know that is an Irish name, a version of a last name we both know well.

 

I’m hoping all here are doing well today. 🌹

 

Hey you!  You know the oddest information of anyone I know.  I am really glad your voice was working well this morning.  I loved Rooney Mara in The Girl with the Dragon Tattoo with Daniel Craig.  Was hoping the next 2 would come out, but no luck.  I read all 3 books and loved them.  She played her character so well.  Good to see you posting, love you much!!  Mary 🌹🚂🐈🐾🐾

 

Hi there my friend. I read a lot to learn all this stuff. Blake came over last night, and said he was seeing the Joker himself as soon as he got the time.

 

Joaquin is a shy person and lonely. Always felt left out as a child. He and his siblings had to help to support the family so they all got together as children and put on plays that people watched as they walked by and then gave these kids change like quarters and dimes.

 

Rooney Mara sister is Kate Mara who also been in movies. I really liked her in Transsiberiun with Woody Harrelson and in The Shooter with Mark Walhberg.

 

I saw Rooney Mara also in The Girl with the Dragon Tattoo. I read all 3 books like you did. But I also saw the original Swedish versions with Naomi Rapace. They were all with subtitles, but those Swedish subtitles are readable so you can read along and still see all the action.

 

Whenever we’ve seen a French or Spanish movie, they talk fast and the subtitles are fast also.

 

Dan and I are off to the grocery store in a minute. Love you my friend. 🌹 🚂 🌶.  💜🧡💛

 

[[Ol...]]

Meems- Valley just posted the propaganda a few pages back... it's the reeeeeeealy long thread!

Triggering is the correct word for the fb group, I agree! Turning off the notifications made a huge difference for me, I can go there when I want to but it does not even show up in my feed.

 

Intend- I loved the Girl With the Dragon Tattoo books! Could not put them down. I never saw the movies tough I did hear that the Swedish version was the best. I will have to go back and watch them.

 

I hope everyone is having an ok night 

[[Ol...]]

Propaganda is on page 4033 - look for the chicken!

 

[[Va...]]

Hello all lovelies in this group.  I joined a Facebook group and I think it’s ok but just from the week in this group I feel so safe.  I’ve been a little triggered on that  FB group cause there is ALOT of CT’s.  I did one a year ago and had two seizures.  I am in a long hold and not seeing much of that.  So I thought I love my new group here even though I don’t know you guys yet. 

Aside from the weird FB group And going to bed way too late last night and waking up feeling like shit, I’m in a window.  Body is feeling ok.  Enjoy it, right?  This too shall pass.  F it, I’m enjoying it. 

~meems

 

Glad you like being here Meems.  I have heard good and bad about the FB Groups but never joined one.  I love bb and it's more what I expected a support group to be.  So, I'm with you, staying here.

Glad you had a good day, Mary

 

I was in several FB groups at one time and found the slow and steady mentality  was not well received overall although a few reached out and actually called me because the “get off as fast as possible” mentality was rampant and it wasn’t working for them. It was somewhat rampant on BB when this group started as well. The fact that it is one of the most active groups here is very telling.

 

Slow and steady wins the race.

 

Hang in there everyone! It does get bumpy at times, but if you take it slow and don’t let the anxiety get in the way, it’s a much easier journey IMO.  —V

 

P.S. It’s hard to keep up with this group at times 😆

 

 

 

[[Va...]]

For everyone struggling during your hold, this is a list I compiled of the sxs I experienced while holding. These cycled through in the windows and waves pattern with more waves than windows for quite a while, before becoming somewhat consistent.

 

List of sxs experienced during this 6 month hold:

Electric shocks in legs, feet and hands

Severe sweating

Muscle and nerve pain in shoulders, neck, feet, legs and back

Excessive DP/DR

Extreme fatigue

Terrible depression

Vertigo

Muscle fasciculations

Frequent urination

Anhedonia

Apathy

Activity intolerance

Insomnia

Tinnitus

Blurry vision with floaters

Hands shaking

Feeling like I live in a dream world

Impaired cognitive function

 

I think when sxs ramp up during a hold, the tendency is to panic when we are better served by understanding that our current condition is temporary and will pass as our bodies adjust and repair and we again reach a more calm state.

 

Hang in there!  —V

 

 

 

[[Gu...]]

I honestly think it’s time for me to hold awhile.  I was hoping to cut this week but either too much is going on or my CNS is screaming STOP!

 

My doctors say I’m on a therapeutic dose but I disagree. This is equal to almost 18mg Valium and I bet that’s not therapeutic.  Hard to argue with them.  They think they are so smart.

 

Ok I give in but This laboratory work sure gets old.

[[Ma...]]

I honestly think it’s time for me to hold awhile.  I was hoping to cut this week but either too much is going on or my CNS is screaming STOP!

 

My doctors say I’m on a therapeutic dose but I disagree. This is equal to almost 18mg Valium and I bet that’s not therapeutic.  Hard to argue with them.  They think they are so smart.

 

Ok I give in but This laboratory work sure gets old.

 

oh, GP, I am sorry you are having to hold, I am too.  Holding is hard, but very necessary sometimes.

I will be right here with you.  You are having so many followers on your blog, it is hilarious.  Maybe you will find a new talent to pursue  . Love you, Mary 💜

[[Gu...]]

Thanks Mary.  I’m still posting my blog to my plot.  I have to get that sorted.  Rough morning.  And now my oatmeal is too dry. 

[[Ma...]]

Thanks Mary.  I’m still posting my blog to my plot.  I have to get that sorted.  Rough morning.  And now my oatmeal is too dry. 

 

I make mine runny, it seems to be easier on my yummy

[[Ma...]]

For everyone struggling during your hold, this is a list I compiled of the sxs I experienced while holding. These cycled through in the windows and waves pattern with more waves than windows for quite a while, before becoming somewhat consistent.

 

List of sxs experienced during this 6 month hold:

Electric shocks in legs, feet and hands

Severe sweating

Muscle and nerve pain in shoulders, neck, feet, legs and back

Excessive DP/DR

Extreme fatigue

Terrible depression

Vertigo

Muscle fasciculations

Frequent urination

Anhedonia

Apathy

Activity intolerance

Insomnia

Tinnitus

Blurry vision with floaters

Hands shaking

Feeling like I live in a dream world

Impaired cognitive function

 

I think when sxs ramp up during a hold, the tendency is to panic when we are better served by understanding that our current condition is temporary and will pass as our bodies adjust and repair and we again reach a more calm state.

 

Hang in there!  —V

 

Thanks for the symptom list V,  I have 5 or 6 right now, pretty severe, but holding and hoping.  Just switched to Pharm Liquid Diazapam, really hoping it helps.  Hope you have a good day!  Yes, this thread can move fast, we all know each other , pets, and family pretty well.  So sometimes we talk to much 

[[Ma...]]

Valley, did you by any chance find anything that helped with your back, neck, and shoulder muscles?

Many of us on here right now are really struggling with our muscles  . Mary

[[Ma...]]

GP, I just found a thread that may help us, and then looked some information up on google.

 

It seems, from what I am reading, there could be a correlation with our muscles getting worse and the nsaids we are taking.  Of course, I am no expert , but the time frame for me certainly lines up.  I had been taking more lately because the pain was so bad.  How about you? 

 

The name of the thread is Aspirin, under Other Medications, if you want to read and research.

 

I know going without will leave me in agony but if I am making it worse?

 

DD could this be happening to you too?  Were you taking more? 

 

Love you guys, Mary 💜

[[Gu...]]

I stopped taking NSAIDs several weeks ago though thank you for the research.

 

Do you think maybe we’re just getting old?  I don’t remember my parents talking about this.

 

Darn doctors just keep pushing Gabapentin.  I wish they had to take all of these meds before they prescribed them.  I’m sticking with the Wahl back massager and hope my muscles wake up.

[[Ma...]]

I stopped taking NSAIDs several weeks ago though thank you for the research.

 

Do you think maybe we’re just getting old?  I don’t remember my parents talking about this.

 

Darn doctors just keep pushing Gabapentin.  I wish they had to take all of these meds before they prescribed them.  I’m sticking with the Wahl back massager and hope my muscles wake up.

 

I'm sticking to the heating pad, massage, exercise when I can.  There is also some information about nsaids and gaba receptors  .  Not truly understanding it all, I won't try to explain it 

[[Me...]]

Good morning - I have some of these too.  The worst I have is insomnia and broken sleep (bad dreams), morning nausea (cortisol surge) protracted anxiety, extreme mood swings, tinnitus, headaches. I noticed the last few weeks the muscle mass I have lost in my legs and calves.  I’ve been on a total of benzos for 18 months and holding for two months now.  I got to get blood work done this morning as my psych wants my glucose and lipid panel checked.  And it’s best to drink a lot water before a blood draw to get an easy vein.  I can’t tolerate drinking water right now. I want to get this blood drawn soon cause I’m fasting.  Haven’t gotten through the morning nausea and anxiety.  Drinking my ginger tea. 

This sucks.  Will this go away with a longer hold?  I dunno 🤷‍♀️. 

I hope your all hanging in today. 

[[Gu...]]

You were so smart to catch this at 18 months.  I think this muscle mass loss messes up so much.  It throws the body chemistry off kilter and then everything is kaput. Feel better soon Meems.  Are the fires contained?

[[Me...]]

I agree!  I’m not sure if the fires are contained.  I haven’t heard anything on the news. I sure hope so.  I think protein and protein shakes are good for muscle mass (and excersise) but I’m hesitant about any supplements. 

~meems