The Long Hold Support Group

[[St...]]

Hi Esperanza l know stress can sometimes cause hair loss however it really isn't known to cause a lot of hair loss.l think you are perhaps reading too much on the internet.There are a lot of scare stories so please don't panic.

    Your doctor sadly will probably not accept your suffering withdrawal symptoms.That is very frustrating for you.l don't really know what to say about that unless perhaps you can go to another doctor.

    Love Stut X

[[ga...]]

esperanza, I agree with stut. I haven't lost any hair. I've never even heard of it as a withdrawal symptom so I doubt it's common. There is a lot of misinformation out there. Be very careful about believing everything you read, even on Benzo Buddies. Benzo Buddies has moderators but they do not read every post. They step in when someone reports a problem to them. So take what you read with a grain of salt. Actually, a shaker of salt! I suggest you get the basic knowledge you need, then choose a thread or two that seem sensible and safe, and don't read anywhere else.

 

As for doctors, I think most of us have the same kind of doctor you do. They do not understand withdrawal. They give out wrong information. They upset us. I spent years looking for affirmation from doctors and counselors but only got more and more distressed. Then I decided to un-patient myself. I do not look at myself as someone's patient any more. I am in charge of myself. My doctor is my "medical contractor." I get services from him. He is not my advocate. He is not my emotional support. He is my medical contractor.

 

In fact, I have to go see my medical contractor today. I will tell him only what he absolutely needs to know, get my script, and leave. Then I will go do something positive to re-set my thinking.

 

That's how I cope with all this. I hope some of those thoughts are helpful.

 

Gard

[[es...]]

Thank you both so much.  I feel better. I was thinking after my appointment yesterday, that my doctor is no different than a “dealer”. So sad. I actually think he is trying to deny the damage he has done to me by not educating himself. It is out there. I have told him enough over the past decade that should have led him to the answer of why I was going from dysthymia to debilitating depression, why my tendency to over-worry had become crippling anxiety over nothing. If he had asks the right questions, I could have told him 10 other side effects -all tolerance withdrawal. Now he doesn’t want to hear it. I made the diagnosis. Now I am implementing the treatment. This forum is so important because it is easy for doctors to gaslight us. Glad we have each other. Esperanza

[[Tr...]]

Hi Esperanza!

I've been thinking about you! I was gong to PM you to see how you were doing. I'm sorry to hear you're not much better then when we last spoke. I wish I could help you but I'm not in the K boat, I'm in the X boat (  The ladies Stut, Gard gave you great advice) . just know you're in my thoughts and if ever you want to vent I always have an ear to listen.

Trish

[[...]]

Hi Everyone..

 

Just doing a bit of reflecting.. -bear with me...

 

When I joined BB I was pretty lost, -Over a year off insane high dose opiates and protracted, reducing Valium way too quick, and couldnt get answers from my Drs, -or info on BB that suited/fitted my situation..

I wouldnt say I was medically naive, I have a little background in natural medicine, But this was well beyond that...

 

I too, was given a little heads up about this group , and people here that had some pretty complex histories...

What I found was that the ones that were doing well had let go of the "noise", -all the thoughts that bring chaos and instibility... They were accepting of the simplicity of time and patience... Trusting in our bodys ability to heal...

 

I kept looking for easier or faster solutions, and made mistakes... I read up on the "science" stuff and appreciate the complexity of it all, but for most people I think its all "noise", and the take home message is simplicity, Quiet, Calm... -let our bodys guide us gently through...

 

Everything in our bodies seem to be affected, not just gabba n glutimate, our whole endocrine system, and some... Everything we try to "fix" is potentially throwing more disruption and chaos into the healing process... Obviously there are exceptions and some people do need medicine support, but to judge or diagnose this while in WD is kinda pointless, -beyond being safe (not everything is WD)... And if a Dr doesnt believe in Benzo Discontinuation Syndrome, they will find a diagnosis and medicine for Every symptom possible...

 

There seem to be two main schooos of thought on tapering.. Imho...

 

1, To safely taper to "0" and THEN start healing med free, The Ashton taper fits here... -and many will walk off fine with that...

 

2, A SLOW symptom based taper, allowing our bodys to heal as we try to maintain a level of symptoms that are mild enough to promote a relitivly stress free healing environment for our CNS as we taper.. No short cuts that might bite us at "X" number of months (or years) post taper...

 

Each to their own, A long Hold is a good tool for both...

But it is hard to maintain a Slow SX taper, when the priority is medication removal, rather than healing...

 

These are just MY quick thoughts, and I invite any comments...

 

A big thanks To Begood, Valleyum, and Lynn33 for showing me MY way...

Also thanks to Free, Miyu, Heath, Gard, NJ, SS, RST, Tntd, and so many more for walking beside me here before I was away for a while, and I welcome the newer faces and hope you all find the way that suits you best... (oh I hate doing names, -there are so many more...!!)

Thanks Stut for being the "glue" that helps holds this place together...

THank you Cant for this , it's a great post , I appreciate you here in this group very much too. I seek answers almost every day , anything that might relieve the suffering, but in the end , it's acceptance that seems to make the most difference in the process ,  I guess I haven't really found "my way' yet altogether , a way that I can find acceptance with on a daily basis.

I've  been a  bit down this weekend ... with the 'nature of this beast'. So I don't have much to say tonight ..

 

I will try and catch up soon  with what's happening with  everyone ,

 

in the meantime, I am so grateful for you all , for the support that I can't imagine going through this without.

much love,

MiYu

Hi MiYu,

I am sorry this is so hard on you, its been a long road... And I certainly didnt mean people should give up on looking for answers, as I believe they are there...

But I more meant the mind frame and position from which we do it...  One thing to be methodically advancing our knowledge and understanding of our bodies and chemistry and applying that to best use...

But its another to be frantically trying this that and everything else, because one "heard" it might have helped someone else, or a Dr uneducated in BWS thinks its worth a try (without valid reason)...

 

By the time people are considering a Hold, they are also considering the mindset that will serve them well.. -Quiet, calm... -Hang on a minute..

 

MiYu, I think you found a good level of the Quiet some time ago, or maybe better put, rational productive thought.. Pls dont let the doubt creep in, and I know it does, but let it pass and stay true to your goals.. I wish you every strength.. Feel better soon...

 

Sorry if my post didnt realy fit... I wrote it after being on the main boards for a bit, and everyone seemed to be flying every which way... -as have I in the past... As will others in the future...

 

 

Oh no Cant- your post fit perfectly .. .It probably came across like it didn't sit with me because I was feeling depressed,

With you all the way ....  ( messaging can sometimes come across wrongly )

I get what you are saying, and thanks for your support . I do feel like I 've reached a level of acceptance now  for sure with this process... An yes , I know for me , I have to keep looking for answers that might help me through this , make it easier , and that in the midst of acceptance- not mutually exclusive, and you said it well

 

Hope you a re doing ok ?  I haven't caught up yet , but your post came up in my inbox email!

 

miyu

[[...]]

Does anyone know anything about prescription discount cards like Rx assist, Good rx et? Are they scams? Thanks, SC

 

Hi SC 

They are not scams , I have used them often and they work well! you can even just send them to your phone and take that into the pharmacy with you . I also got a card from GoodRX that works for any meds. you can order it on their site.

 

love, mIYu

PS , I haven;t made my switch yet on K as I still have a month of Tevas left... will keep you posted when I do , I think i'm going to look for activas. Sandoz was Horrible!!

[[...]]

It is getting so hard. Not just the horrible anxiety and depression, but my doctor thinking my symptoms could not be from withdrawal. Won’t even listen.  Now, I am reading about losing my hair.  Is it to be expected that I will lose 50% of my hair or is that something that doesn’t always happen?  I know that is a small thing, but I feel like it will be a terrible blow to me. I have already faced losing both breasts as a result of overdiagnosis and medical mistakes.  Can anyone offer hope? Thank you, Esperanza

 

Esperanza, I'm so sorry for your troubles. Life can really throw us some things that seem so unfair. I too was misdiagnosed and that's what got me in this mess ( addisons disease- nothing like what you have been through though it sounds like)

 

I have lost probably 1/2 my hair, I don't know why , stress maybe of this process. I think it will grow back , and the loss seems to have slowed down some what too.

If you can find acceptance, even if not every day , it sometimes is the only"power" we have left . how we relate to what has happened to us in our lives is the choice that we DO have .

 

And yes , there is hope, the prognosis is good even with all the horrors of benzo withdrawal , it seems that everyone heals .

HAng in there , sending love and hugs

MiYu

 

[[...]]

HI dear buddies , I hope  everyone is hanging in there , or having a good day

 

We'll ALL get there in the end .... and I am hopeful there will be real gifts when we do that we couldn't have forseen. I already feel some gifts - like I know I am much more compassionate than i used to be,  I actually FEEL love and gratitude in a  way I never did before, though it's like all the feelings , both positive and negative are magnified!!

 

quick update - my depression seems to have lifted. I'm just bone crushed tired the last few days, heavy legs  too.

I had to go to the dentist yesterday , it was hard ,  ( I had to take an extra 100mgs gabapentin to get through it) but I have my bridge back and he was really quick and did a great job so I'm happy that is handled.

 

tapering at 1% rate the last 10 days... so far I've managed. I'm hopeful that my 'wdnormal" will improve as long as I don't overdo it....

 

thinking of you all .

love MiYu :smitten:

[[Sc...]]

Does anyone know anything about prescription discount cards like Rx assist, Good rx et? Are they scams? Thanks, SC

 

Hi SC 

They are not scams , I have used them often and they work well! you can even just send them to your phone and take that into the pharmacy with you . I also got a card from GoodRX that works for any meds. you can order it on their site.

 

love, mIYu

PS , I haven;t made my switch yet on K as I still have a month of Tevas left... will keep you posted when I do , I think i'm going to look for activas. Sandoz was Horrible!!

Thanks MiYu,

What others besides good rx have you used? Hoe do you send them to your phone? Good rx doesn’t combine with insurance, only without it. Do you know any that combine?

 

Sorry the Sandoz was horrible. I think I’m done obsessing over generics & brand that I can’t afford for now & will try to find & try actavis too. Wishing you luck. Glad your feeling taper ok

Love SC

[[In...]]

No Sc,

 

They’re not scams. I have several myself which I’ve never used. I did just go their websites, and they seem to be all about getting generic meds. I just posted the 3 I have on the KKKlub also.

 

I’m thinkinking I just really need to call my pharmacy. I just dread hearing what I heard last month: no Actavis, Teva and Accord in stock, and Sandoz was still available then. But it’s a month later now. Things could have changed.

 

Who in the world would have thought this stuff would happen? Not me.

[[Sc...]]

No Sc,

 

They’re not scams. I have several myself which I’ve never used. I did just go their websites, and they seem to be all about getting generic meds. I just posted the 3 I have on the KKKlub also.

 

I’m thinkinking I just really need to call my pharmacy. I just dread hearing what I heard last month: no Actavis, Teva and Accord in stock, and Sandoz was still available then. But it’s a month later now. Things could have changed.

 

Who in the world would have thought this stuff would happen? Not me.

Thanks dear. I get it. I’ll no doubt have to call around & ask if someone will order actavis to try. Then they won’t promise to keep in stock though.

Yes I saw your post, thanks. I don’t think they combine with insurance coverage though, either one or the other & for generics yes.

[[Sc...]]

What Esperanza talks about as tolerance withdrawal sxs sounds like some things I have had. Can someone explain this to me sometime? Thanks

[[Tr...]]

What Esperanza talks about as tolerance withdrawal sxs sounds like some things I have had. Can someone explain this to me sometime? Thanks

 

SC,

I don't get the whole tolerance thing.. It's confusing to me as well. If I maintained 3 mgs of Xanax for yrs. And then eventually 2 mgs of Xanax for a couple yrs without any problems, then what is tolerance withdrawal?? Not saying it isn't real just don't understand it. So we'll have to wait for someone who knows to answer.

Trish

[[Sc...]]

Thanks trishy! Be well

[[Tr...]]

You too SC!!

Trish

[[Sc...]]

Hi all.

Re clonazapam.

Ok I called all pharmacies & it’s solco, accord, & North Star. No one can promise anything will stay in stock & no one can order actavis for me. I lied I’m not done obsessing about what generic I can get ugh...anyone tried North Star?

Thanks dears, SC

[[St...]]

Hi Trish and SC tolerance withdrawal occurs when on a stable dose sometimes when you hit tolerance after a period of time you can get withdrawal symptoms without tapering however in my experience the withdrawal symptoms are nowhere near as bad as when you are tapering.

    That's all it is some people get it others don't after years of benzo use.

    Love Stut X

[[Tr...]]

Hi Trish and SC tolerance withdrawal occurs when on a stable dose sometimes when you hit tolerance after a period of time you can get withdrawal symptoms without tapering however in my experience the withdrawal symptoms are nowhere near as bad as when you are tapering.

    That's all it is some people get it others don't after years of benzo use.

    Love Stut X

 

Thanks Stut!

If I had  withdrawl symptoms while maintaining all those years they were subtle or non existent. I definitely would have noticed in comparison to what I feel now..uhgg!!

Thanks for clearing that up!

Trish

[[Tr...]]

Hey Stut,

I'm thinking back when I was on stable dose and taking my Xanax after a number of years was like taking a vitamin, I felt nothing from them or very little affect. My thinking was that if I didn't take them my anxiety/ panic would return so I  was religious about taking them. I must have been tolerant to them.. So that brings me to my next question... Why do some people who are tapering updose to feel better, were they not tolerant?? Forgive my ignorance but I really want to understand all this.

 

Trish

[[ke...]]

blue,

 

Appreciate that. I’m on @1.5 K so maybe cross would be ok. Just had such awful cross to K because of that same doctor. I’ve never felt very well on K since. Been switched between 4 generic brands K after cross. Somewhat of a mess.

 

Tapering Sandoz K right now. Have had to slow way down because my poor cns is traumatitized. Not kidding about that.

 

Just not sure my poor brain could handle another cross. I have to go slow. Also never started over with all these switches. Just kept dose where it was as I adjusted to switch. I can definitely figure out how to taper one while I cross. But doing slow liquid taper on K. Kind of see myself with fridge and a bunch of jars full of 2 liquidized benzos. I do have a bunch of Sandoz though. And with all this consolidations of companies, it may become necessary.

 

Nice!!! Major progress on the taper. Halfway down. I'm happy for you!!!

[[In...]]

Thanks keagan. I appreciate your response.

[[St...]]

Hi Trish you are not being ignorant at all.Xanax was doing nothing therapeutic for you however the brain had adapted to the drug.Now simply put the brain registers every cut scrambling like mad to adapt.The bigger the cut the more it scrambles.Sometimes it just needs a small updose to allow the brain to adjust quicker and to lessen the withdrawal symptoms.

    It all sounds weird and if anyone has a better explanation shout out.

    Love Stut X

[[St...]]

Hi intend l am sorry you are having so much stress over all these changes.l hope you and other k users find some relief and stability in the near future.

    Love Stut X

[[St...]]

Begood,Cant, Bluepill,SS(nice to see you back),Heath, Miyu,SC, Mary,Gard,TMB, Olive, and everyone else l have failed to mention l am hoping you all have a peaceful and healing day.My thoughts are with you all.

    Love Stut X

[[be...]]

Begood,Cant, Bluepill,SS(nice to see you back),Heath, Miyu,SC, Mary,Gard,TMB, Olive, and everyone else l have failed to mention l am hoping you all have a peaceful and healing day.My thoughts are with you all.

    Love Stut X

Morning Stut, thanks always for the warm welcome My Friend, makes my day to read your message. Thanks for supporting Cona during this time, she is a lovely Lady and has such a big heart and I know she will find comfort in our posts to her. I felt like I knew her Precious Mother and the Love she had to give to Cona and others. Those of us that have lost our Parents know the pain that comes with it, no matter how well we are prepared. Again thank you for reaching out to another in Pain. I hope you are doing OK and continue to walk forward one step at a time. 💖 Peace and Healing Hugs.