The Long Hold Support Group

[[fr...]]

  Heath,  I had tapered down to 13 mg. from 20 mg after crossing over from Ativan.  It went well at first.  I had to have surgery in January and it was after that the burning really started in and has spread.  I don't know if all the drugs they give you for surgery did something or if the other two drugs I am on interact but I do notice a lot of Valium users have this burning neuropathy.  The Dr. suggested to updose to 15 mg. but I only went to 14 and I think it got worse.  I am holding again.  I had held for 5 months but maybe it wasn't enough who knows.  Now I have been holding about 4 months and no joy yet.  It is truly awful.  If it was just pins and needles I think I could take it better but it is full out burning and also shooting pain into my toes at times.  Anyway, I pray it goes away quickly for you.  YOu are so low in dose and also not on other meds so you will probably be fine.  I just hate to write such bad news on the thread all the time.  Its too scary to most people.  I know if it wasn't me having this it would scare me to read about it.  YOu hang in there and hold for now and it will probably lift for you. 

[[He...]]

Hi again Freeme,

It's true I am low in dose, and I'm going real slow in my cutting. But when I cut .02 that was less than 5%. And it was after about five weeks hold. What the heck..to get such a side effect from a less than 5% cut??? I guess I'll be back to two month holds at least! AGAIN. AND I BETTER START THE MICRO TAPER I WAS PLANNING BUT DIDNT DO (dumb)

 

Another thing has me wondering. You and Miyu have described a burning pain .

I don't have a burning pain. I only have severe pins and needles that are really bad and cause pain, but mine I wouldn't describe as burning.

 

I looked up things on the Internet  and I'm beginning to think that , because I have had issues with my cervical spine before, that maybe this is not neuropathy. Maybe I have a pinched nerve in my neck. I know many people have gone to doctors with wd sxs  only to find that they were sxs and nothing more.  And I was just at the neurosurgeon  three weeks ago and he ruled that out. But that was before I had these pins and needles in my arms.

So I'm going to hang in as long as I can and see what happens -

So before I make any changes. I'll go to the neurosurgeon. AGAIN.  He already thinks I'm an alarmist so one more visit can't hurt.

I don't know which would be a worse diagnosis, a pinched nerve or a wd sxs!

Just  thinking out loud. Sorry.

 

You hang in there too! Don't worry about scaring people. You have to be honest to get support. Sure, everyone on this forum has read posts that can be worrisome, but we all know that everyone is different.  Not everyone will experience the same wd sxs as anyone else nor the severity.  Maybe zone one will pop in with some good advice that you haven't heard of before.

By the way , with a little bit of searching you can find websites that advise of interactions with different prescription drugs and/or natural herbs etc. If you type in drug interactions in your search engine, it should give you many options to go to. I think one of them is drugs.com

 

Heath

[[...]]

Dear Heath,  Freeme, Nova , I'm so sorry you are having such difficult symptoms.

Nova, I have the burning constantly too , it's mostly in my stomach , chest and spine, mines actually better when I'm sitting or standing, lying down its worse. My stomach often hurts and feels sore too.

 

Heath, I have experienced something that feels like someone is sticking pins all over me.... I don't get that too often , the burning is bad enough! But I know what it feels like and mine comes and goes , so I am sure it is a WD symptom . I have a feeling that your symptoms will ease up more quickly this time if you hold where you are.

 

I have a little good news, after two hellish days last week, where I felt I am never going to get through this , and yesterday had lead legs like crazy where I couldn't even feel my legs to move them , today , I felt better! Not great , still lots of physical symptoms , but I had some energy, I visited a friend and chatted for a while, and  all in all felt a little hope and something like normality, even with the physical symptoms that are constant..... Praying it will last a bit , I ve been needing it! 

What a crazy roller coaster, and so weird how one can feel so horrible one day and the next feel ok....enough to bring anyone to their knees...

 

Grateful for this window though, a little light coming in.

I so hope you all feel better , and that  you can find some relief very soon , We all need that....

 

Hugs to everyone ,

MiYu  :hug:

 

[[be...]]

[glow=red,2,300]"Great News MiYu."[/glow] 

 

[[ly...]]

 

 

Wonderful MiYu!

[[He...]]

So happy for you Miyu! I hope it continues to get better each day and your Windows get wider and wider!

 

Heath

[[...]]

thank you ! You're all so sweet 

[[so...]]

Hi guys, really need some hugs. I don't understand why, but I feel dreadful. I've been spiraling down, despite my hold of about 76 days now at 3.0 mg V. The nausea has come roaring back, dizzy head spaciness terrible. I am at work and can't think. Trying not vomit at my desk.

 

I was no longer so interested in getting off the benzo, but just holding and feeling stable so I could enjoy some time. This is because of my cancer diagnosis. I figure I don't have the time required to taper all the way and spend a year healing, so I just decided to hit pause and enjoy what's left of my remission.

 

I don't know what to do. I can barely function. Should I updose and try to find a better level? Stay put on 3 mg and see what happens fi I continue to hold? Or see if cutting helps?

 

The tapering was getting worse, which is why I decided to hold.

 

I'm feeling such despair. All I want are a few good months.  :'(

[[ga...]]

(((solitude))) From what I have read on this thread, it takes most people longer than 3 or 4 months to feel consistently better. You will probably still have nasty waves and windows at 76 days. Sorry, I don't know about up-dosing. Some people it helps. Some it doesn't. I hope V can come give you better advice. I have health and serious life problems, too, and they can really make my w/d symptoms nasty. Wish I could be more help. Not in a good place. I'm sure others will come and give advice.

 

Gard

[[be...]]

Solitude, I did not know you had been going through so much with your health, you say you want to spend your time not tapering but feeling better, I can understand that perfectly, You want your time to be without tapering. I would say to you, if that is your goal, to have some quality time, an up dose, right now would probably help you, but are you certain it is the Hold and not from the illness, that is my concern, because everything is not always the taper or hold. Valley has been known to do an up dose to get over a bad patch, but I do not know how much he does, and I am sure he will be on sometime soon, I think he is back to teaching. I do not know if you have access to some ginger tea, may help the nausea. I wish I could offer more help, but please know that I am indeed sending you silent hugs, and it will not just be for right now, but I will be sure I send them daily. Hope by the time you read this you are feeling better. {{{{Hugs}}}}

[[ly...]]

 

 

SS,

 

I am sad to hear this.  How long have you been feeling so bad?  I agree with begood as to updosing but I'm no expert in that regard.  I would do whatever was necessary for you to feel well and happy.

[[Kg...]]

SS: So sorry to hear about how you are doing.  I truly believe this is something you need to discuss with your oncologist.  As others have said sometimes it is not the benzos.  If your doctor says it is then given what you are going through my advice is -why bother - just do whatever it is that makes you feel better. If that is taking a larger amt of the Valium or even a different benzo then do it. If cutting makes you feel better, as it did to me then cut - otherwise just stop your taper and take as much benzos or anything else that you need to make all your s/x go away.

 

I pray for your healing.

 

 

[[so...]]

Thanks everyone. Yeah, I'm caught in a bind. I had stage IIIC ovarian cancer, diagnosed in June 2015. Chance of recurrence is high. The long-term survival stats are not good overall.

 

During chemo they put me on Ativan. I was given no warning at all, just a chirpy nurse saying "a lot of our ladies like Ativan!". Once chemo was over I tried to stop the Ativan, and to my bewilderment began to feel worse and worse. It took me a while to figure out what was going on. Crossed over to V in March and began tapering. It's been slow and quite torturous, and as I got lower I felt worse, as many of us do.

 

I took a hard look at my situation two months ago. That was my one-year anniversary of remission. And every day of it has been miserable due to the benzos. The disappointment of this has been catastrophic. I feel the clock ticking. I'm sure I don't have to tell you guys how precious remission is to someone like me. I had plans to live my life as fully as possible and fit in some travel and fun, and special times with my daughter. All of it ruined by this contemptible and preventable benzo illness.

 

The other hard look I had to take is the fact that I have an inherited genetic condition - Lynch Syndrome. It's the reason for my cancer. Increases the probability that I will get cancer again, in some form.

 

So I began to wonder why I was flogging myself to get off the V in what could very well be my final months/years. If I had all the time I needed to taper and recover, I'd go for it. But in all likelihood I don't, so I thought that I'd just hold and stabilize so that I could enjoy what remains of my remission. Even my addiction doc went with me on this. He said that his job is to get people off benzos, but he agreed that my situation was different, and perhaps focusing on stabilizing and feeling better would be best for me. So he granted me a hold, and promised to continue to prescribe.

 

This dreadful drug seems to have other things in mind. This hold has been crappy, though maybe I do just need to give it more time. Sigh... I am thinking of updosing and seeing if that helps. I just wish we all had a crystal ball to see if we are making the right moves as we negotiate this treacherous path.

 

I do see my oncologist next week. I will tell him of my worsening headaches, dizziness and nausea. I have no doubt that he will send me for a CT scan to make sure the cancer isn't acting up. But I'm guessing it's the benzos. I think I would have more pelvic symptoms if the cancer was starting to bebop around in there again. But who knows.

 

My oncologist is a sweet guy and a very good oncologist, but he's totally benzo ignorant. He's very surprised at how sick this has made me. He gives Ativan to most of his patients and hasn't seen this sort of trouble before. I guess I'm special. But, to give him some credit, he has changed his prescribing protocol for benzos since I had a meltdown in his office, and made sure his staff now gives full information about the potential problems.

 

I'll also be calling my addiction guy to discuss whether updosing would be reasonable. Again, I know some people feel better when they updose and some do not, or even feel worse. The unpredictability of this just sucks. Meh...

 

Thanks again. I love you guys and appreciate your concern and encouragement. 

 

~SS

[[fr...]]

  SS, Just wanted to add my sincere good wishes that you can get some good advice from your Drs.  Its just awful what these drugs do to us and no one warned us.  I pray you can stabilize from either and updose or a change in meds.  I am contemplating going back to Ativan after almost 2 yrs. of Valium as it has also made me deathly ill and gave me too many symptoms.  You sound like a strong woman and I wish you the best. 

[[...]]

Heath, free and MiYu nerve pain is probably my worst  symptom. It is a very difficult thing to deal with but there are times when it's not as bad. I understand how frustrating it is because it sometimes keeps me from being able to exercise and be as active as much as I would like. Nerve and muscle pain are so common and I think nova got it right when she stated the best thing to do is hold until the pain is gone. I hope you all get past this minor roadblock!  --V

 

Thanks V, I'm sorry you suffer this too 

 

[[Va...]]

SS. I had no idea you were struggling so bad. If it were me I'd definitely updose and continue holding. Updosing was always a difficult thing for me as it ramped up sxs until I figured out that if I updose like a taper I actually have good luck. So I go up in small amounts like.25 and hold a week and then do it again.

 

I can tell you I had nausea clear up until 4 1/2 months and still get bouts of it now which is why I went to a ketogenic diet although I wouldn't recommend it for everyone, it really helps my nausea and HIS sxs. I held for 180 days before feeling decent so don't give up just yet!.

 

Will keep you in my thoughts and prayers and try to brainstorm some additional ideas to help.

 

I would recommend a cross back except you would have to endure the cross back and go through valium withdrawal which may take more time in the long run than just waiting it out. If others have crossed back I hope they chime in.  Hang in there! --V

[[...]]

Dear SS, I'm so sorry for what you are suffering..... What a difficult situation for you . I do hope and pray that your doctor can help you figure out what's best for you to give you some relief.

I was reading about a dna test that can tell if someone has a negative response to a particular drug. I was thinking of getting it myself for the V as my taper has been so hard thus far.

 

I believe you can survive this , and your cancer . But I just pray that you can find some relief from suffering in your life as soon as possible so whatever the outcome you can find some happiness.

 

Sending you love and hugs m

MiYu

[[He...]]

SS: So sorry to hear about how you are doing.  I truly believe this is something you need to discuss with your oncologist.  As others have said sometimes it is not the benzos.  If your doctor says it is then given what you are going through my advice is -why bother - just do whatever it is that makes you feel better. If that is taking a larger amt of the Valium or even a different benzo then do it. If cutting makes you feel better, as it did to me then cut - otherwise just stop your taper and take as much benzos or anything else that you need to make all your s/x go away.

 

I pray for your healing.

 

 

SS  I have come to this conversation late  but want to send you all my prayers, hope and hugs. I have quoted Kgirl's reply because I agree with her wholeheartedly and the replies of the other buddies too  and thought it silly to repeat it all over again.

 

I know that you are going through an unimaginably difficult time. i hope you will continue to be strong and do whatever you need to do to find relief. If it means giving up your taper, up dosing, or anything else your oncologist suggests, I think you should just go for it so you can have quality of life. And don't give up on your struggle with the cancer. There are many people who win the fight and many new discoveries happening every day. If it means giving up the fight with benzos so you have the strength to fight the cancer, I think that is priority right now.

I am thinking about you and hoping you find relief and healing very soon, and I am sending many many hugs that I know you need everyday.

 

With love and hope from my heart to yours, 

 

Heath  (((hugs))) X 1,000,000

[[He...]]

Thanks for the encouragement Everyone,

 

So my pins and needles have subsided a bit so that is good. But today I am lightheaded and dizzy. I made a tiny cut 8 days ago, so I am thinking these sxs that are coming on now is a result of that cut because Valium does have a lag time of up to about ten days with sxs appearing. And there ususally are some sxs with every cut, right?

Hopefully, these will be short lived as my  CNS gets used to the new cut. Hopefully they will clear up in a week or two  But no matter what, it will now be at least a 4-5 week hold. I don't want to go back where I used to be.

My husband is already a bit upset with me for making the last cut. If he  had it his way he'd have me give up my taper completely.

He liked it when I was on the last long hold. I was so normal then and he liked it.  Hopefully I will be "normal" again in about a week.  We shall see.

 

I'm  feeling a bit better and not so scared as I was for the past three days. I'm beginning to understand that cuts bring on sxs and it's nothing to worry about. They will pass as long as I continue to go slow. HOPEFULLY!

 

Heath

[[be...]]

Yes Heath sounds like the last cut is rearing its head. These benzo's "Just Keep On Giving".

[[He...]]

BG

You are sooo right!

[[ly...]]

 

 

I have symptoms with every cut.  It's just a matter of degree.

[[He...]]

I just wish I knew for sure if the pins be needles were a wdsx or something going on in my cervical spine. I guess I won't know till I'm off of this stuff.

[[no...]]

I just wish I knew for sure if the pins be needles were a wdsx or something going on in my cervical spine. I guess I won't know till I'm off of this stuff.

Heath  Mine was so bad at one time I thought it was rheumatoid arthritis  developing as I have a full hip replacement due to osteo arthritis, and  for many  months I had to wear splints on my arms at bed time and quite often during the day, and I'd sometimes get numbness in my hand and arms as well. I was also diagnosed as having reynards disease as I had classic symptoms, it was that bad my arms and legs went from navy blue to black, I got pictures I took of it, and the pain was awful but it was ALL withdrawal.

 

It went away eventually but certain symptoms come an go for no obvious reason they just do because its withdrwal/healing going on, my symptoms mimic lots of different illnesses so do most people but its all withdrwal.  The last few days I feel like I have practically every physical and some mental illnesses known to man, and the physical stuff is agony, my Doctor diagnosed it as Fibromyagia and the hospital said it was M.E but its ALL definitely withdrwal.  I've  got or had a myriad of other symptoms as well, and some really bizzare stuff  all due to Benzos and withdrawal. 

 

 

 

Love Nova xxx  :smitten:  

[[be...]]

Hey "Sista", sorry to hear you are not doing well right now, but I have faith, that the tide will turn for you again, how could any of us know what Benzo's could do to us, I believe that the Doctors did not tell us for fear, we would refuse to take the  pills. Please know I have you in my thoughts and yes Prayers too. :smitten: