The Long Hold Support Group

[[fr...]]

  So sorry Please, I am in the same situation as you and MiYu.  Couchbound and no life and so so sick and I am on Valium.  I was stable and started taper but it all crashed at 15 mg.  I also am on other meds so don't know how much is from what med.  I cant advise you because I don't know what to do for myself but I just wanted you to know I am with you in spirit.  This is no way to live.  I think all benzos are awful, so it isn't just the K you are on. I wish you the best of luck and I think I would updose if I were you if the Drs. are urging you to do it.  Mine did also but now they are against it.  So grab the chance while they are still open to it.  Hope we all find some relief soon.  Aren't the people on this thread just the best kindest people.  What would we do without them for support?  Love them all. 

[[be...]]

Okay begood and Lynn.... I just read your answers after I did my last post.... Ill have to ponder this ...I've only held a month....thank you for your replies.... They seem to be filled with so much confidence

Please I believe you can have a better life, I am sure of it.

[[Pl...]]

  So sorry Please, I am in the same situation as you and MiYu.  Couchbound and no life and so so sick and I am on Valium.  I was stable and started taper but it all crashed at 15 mg.  I also am on other meds so don't know how much is from what med.  I cant advise you because I don't know what to do for myself but I just wanted you to know I am with you in spirit.  This is no way to live.  I think all benzos are awful, so it isn't just the K you are on. I wish you the best of luck and I think I would updose if I were you if the Drs. are urging you to do it.  Mine did also but now they are against it.  So grab the chance while they are still open to it.  Hope we all find some relief soon.  Aren't the people on this thread just the best kindest people.  What would we do without them for support?  Love them all. 

 

Yes... They are free... Very kind people...Thank you for your kind words...with you in spirit too..actually its a UK based organization that suggested it...

Why are the doctors not for you updosing now? Do they feel holding is a better option?

[[fr...]]

  I don't really know.  Maybe because of all the famous people ODIng on these drugs.  I am in Pain Management and they are so regulated by the gov't so it might be because of them.  I have been questioned about my meds at the pharmacy and I have to pay for an office visit every month to get the pain med.  My primary is the one who scripts me the valium and soma, he seems to be ok with all this but its the PM Dr. that is getting antsy.  The gov't is invading the whole medical industry.  Where were they when they pushed these drugs so hard?  One drug I'm on wasn't even a scheduled med when I started on it, Dr. said it wasn't addictive blah blah so I don't trust any of them.  They push all the new meds at me, which don't work or I refuse.  Just look at the commercials for all the new drugs for depression etc.  shameful.  Anyway, I did updose 1 mg. but I don't think it was enough.  Now I'm like you, scared to updose anymore.  That is why I am saying to try it before they change their minds and try to rush you off.  Best of luck to you.

[[Pl...]]

Thanks free... Are you scared to updose because you think it won't work or because the meds might be ripped away from you?

[[fr...]]

  A little of both. 

[[Pl...]]

  A little of both.

 

I completely understand.... I wish I could be of more comfort to you .... In spirit I am with you...

[[Va...]]

Hi Please. I am so sorry that you continue to suffer.  I can't really add anything to what has been said.  I do know that BAT is the go to for anything benzo related.  I would definitely follow exactly what they say.  They have helped many people get off benzos safely and with sanity intact. 

 

I think sometimes it takes a good while to recover from when we have gotten into a bad place.  I was never stable when I started my taper.  I had all kinds of sxs and had figured out that my problems were benzo related.  I had spent thousands of dollars over the last 2 years I was on them chasing symptoms and never getting any answers. 

 

Once I started to taper, some of the symptoms I was having disappeared.  My mistake was tapering much too quickly and then getting whacked hard when it caught up with me.  If I could go back in time, I would definitely updose and ride it out.  Every time I tried to updose, I would only give it 3 days as my sxs would ramp up especially the insomnia so I always dropped back down in my dose. 

 

When I reflect on last February, when I got hit so hard with terrible sxs, I realize the very slow and subtle improvements that happened. After 6 months, I felt ok, but not great in that thinking was a chore and made me tired when I had to focus and concentrate.  It really hasn't been until the last few weeks that I have felt absolutely fantastic. Looking back, I think it took a year for me to fully recover from the rough start.  I have been tapering, but it has been very slow and the difference is I feel better and better as I reduce whereas before, I felt worse and worse and still kept cutting my dose.

 

I know this is an individual journey for each of us and I truly hope that you can get to the point where you feel really good and are totally functional.  Thoughts and prayers are with you and all who are struggling right now.  --V

[[Va...]]

  I don't really know.  Maybe because of all the famous people ODIng on these drugs.  I am in Pain Management and they are so regulated by the gov't so it might be because of them.  I have been questioned about my meds at the pharmacy and I have to pay for an office visit every month to get the pain med.  My primary is the one who scripts me the valium and soma, he seems to be ok with all this but its the PM Dr. that is getting antsy.  The gov't is invading the whole medical industry.  Where were they when they pushed these drugs so hard?  One drug I'm on wasn't even a scheduled med when I started on it, Dr. said it wasn't addictive blah blah so I don't trust any of them.  They push all the new meds at me, which don't work or I refuse.  Just look at the commercials for all the new drugs for depression etc.  shameful.  Anyway, I did updose 1 mg. but I don't think it was enough.  Now I'm like you, scared to updose anymore.  That is why I am saying to try it before they change their minds and try to rush you off.  Best of luck to you.

Free, I can really identify with your struggles.  I too am a chronic pain patient.  I would guess you are experiencing side effects from more than just the valium but would never suggest that you change anything that is helping you manage your pain.  I only know in my case, the pain medications seemed to increase the tolerance effects of valium. 

 

I would definitely give the updose a shot.  It can take quite a while to feel better.  Did you feel stable when you started your taper?  I can't seem to recall. 

 

Hoping the best for you!  --V

[[jr...]]

well, I have the flu. anybody have any experience with Tamiflu?

[[ly...]]

well, I have the flu. anybody have any experience with Tamiflu?

 

I took tamiflu a year ago without issue.  I was knee-deep in a period of too fast tapering and very symptomatic.  I'm glad I took it as I only ended up with a mild flu.

[[fr...]]

  Yes V I was stable when I crossed over from the ATivan to V and tapered from 20 mg. to 15.  It was then that all heck broke loose.  The pain med used to help with the burning but now it doesn't touch it.  I also take Soma which acts on gaba.  It might be that one also.  So  so sad that the Dr. put me on the two meds so long ago and then added the ativan 6 yrs ago.  I always refused to switch to longer acting and stronger meds so I am fortunate in that respect.  Anyway, I'm so happy you are doing so well now.  You and the others give us hope who struggle.  Thanks for all you do. 

[[jr...]]

well, I have the flu. anybody have any experience with Tamiflu?

 

I took tamiflu a year ago without issue.  I was knee-deep in a period of too fast tapering and very symptomatic.  I'm glad I took it as I only ended up with a mild flu.

 

 

Thanks Lynn. I just took one. I am achy, coughing and the mutha of all headaches!

[[...]]

Miyu,

 

I read an article by I dont remeber who but the writer said that when these sxs arise you have to fool them back. For example when I went through a period of burning skin mainly on my arms, I used an ointment from the dollar store calked Icecold. Its a blue semi translucent gel. I would spread it all over my arms and it felt very cool. Before long the burning stopped.

 

Now I dont know if it was because I fooled my skin into thinking it wa back to normal or if it was just then finished running its course but it worked.

 

If you haven't tried it already, give it a go! It may at least help ease the pain. Fool our senses!

 

Hugs

 

ATU 🙏

 

Good idea thanks ATU .... There is something about fooling our brains , and our presumed ' problems' that can really help healing , I do believe this 

[[...]]

Hi everyone ...... 

 

First I want to say I agree with ATU that this is the best group of people... So kind and wonderful in their support, and amazing too in their wisdom and experience. I am very grateful to have found you all here, thank you!  :smitten:

 

FRee and Please...... I'm so sorry you are suffering so badly. I want to give you a glimmer of hope. I am in my 5 th month of holding ,( apart from a small attempt in November to microtaper a bit, was not ready!)  I don't think I was ever stable after my cross from K to V. I should have held after the cross before tapering in retrospect,  I have suffered mightily as have most of us here from being destabilized.

BUT! Today , I had an ok day......! It wasn't fantastic or 100% or anything like that , but so much better. 

I drove 12 miles to visit a friend , it's been 2 years since I was able to do that!

In general although I haven't been able to go out much at all for a long time , I am feeling more stable than I was.... I believe I still have a ways to go before I can taper again, and Valium does not feel good when I take it , I can't pretend it does or ever did really, but I can feel my nervous system settling down more, and that's something that , as everyone here who has done long holds will confirm , will make it possible for me to taper again eventually.

I went through a period of being terrified every time I had to put a pill in my mouth ..... It didn't help me. With the help of a couple of friends, ( and this wonderful group)they got me to accept that , I can't come off this Valium right now in the way I have been trying to do out of fear , so why not try and accept it...... Let go of the fear of the pill itself as it was only adding to my stress . For the most part I have , it still comes up, but , knowing that I really couldnt suffer the taper anymore , I had really no alternative but to accept that I had to take the pills. For now that is.

Twice in the last week I have battled the , ' gotta get off this drug' mind that is so strong for anyone who has suffered so terribly on them. I have even made microcuts and then changed my mind within the hour , knowing in my gut that I am just not ready. I'm not ready yet, that's the truth for me right now.

I pray that you can find the way that works for you, with my limited experience I just want to offer a little encouragement .

MiYu 

 

[[be...]]

MiYu, what a good post, so happy for you, things do and will get better, and then you can taper again and by that time, you will be in "Charge" of your taper. Three things I had to learn after my first two failed tapers, for me to even think of succeeding. I had to let go of Fear, as it was taking me to places that I did not want to go, to Accept the process of healing and know that I had to take all the time I needed, and to Believe that I could do this, doubt of self is something that really will make things worse.

[[ly...]]

 

MiYu!  Driving!  Out and about!  Just wonderful news!

[[Al...]]

Miyu,

 

Way to go!

I just want to say here that thoughts are powerful powerful things. They always preceed feelings even if we cant remeber the thought that came first.

When in taper or withdrawal even holding of course we can have many negative thoughts because this process throws at us so many mystifying sensations. Those thoughts generate negative feelings which generate more bad thoughts and so on and so on.

So instead of thinking oh I suffered so much today or other such thoughts, which by the way can be overstated often, we should think, hey I lived through another day and I experienced what ever I experienced and I am grateful for it.

 

I know this may sound somewhat absurd on the surface but this kind of thinking will keep away negative thoughts which will keep away bad sensations created by those thoughts.

Yes! Thoughts are extremely powerful things and we have the ability to control our thoughts. It takes practice it wont happen over night but with practice at spotting our negative thoughts and restating them into positive thoughts we can eventually keep the fear and dread at bay. We will live more happily and we will get through this with less sxs and will come out of it with a great skill set ensuring our future happiness.

 

Just a thought!

 

Peace & Healing 🙏

 

ATU

[[ly...]]

Miyu,

 

Way to go!

I just want to say here that thoughts are powerful powerful things. They always preceed feelings even if we cant remeber the thought that came first.

When in taper or withdrawal even holding of course we can have many negative thoughts because this process throws at us so many mystifying sensations. Those thoughts generate negative feelings which generate more bad thoughts and so on and so on.

So instead of thinking oh I suffered so much today or other such thoughts, which by the way can be overstated often, we should think, hey I lived through another day and I experienced what ever I experienced and I am grateful for it.

 

I know this may sound somewhat absurd on the surface but this kind of thinking will keep away negative thoughts which will keep away bad sensations created by those thoughts.

Yes! Thoughts are extremely powerful things and we have the ability to control our thoughts. It takes practice it wont happen over night but with practice at spotting our negative thoughts and restating them into positive thoughts we can eventually keep the fear and dread at bay. We will live more happily and we will get through this with less sxs and will come out of it with a great skill set ensuring our future happiness.

 

Just a thought!

 

Peace & Healing 🙏

 

ATU

 

:thumbsup:   Agree 1000%.  I have been doing/working on this for a while now.  When I catch myself going into the wrong places in my mind, I stop it.  I know how unproductive and, even, destructive thoughts can be.  We really can change patterns that hold us back and hurt our health - physical and mental.  We just have to be alert and nip it in the bud.  It takes practice and eventually becomes rote. 

[[He...]]

MIYU,

I am so happy for you! Driving is a big thing when you've not been confident enough or feeling well enough to drive while being in withdrawal. So since you are driving, WOW!  I just feel it in my bones that this is only the beginning of good good days! You did it! You resisted the temptation to rush ahead, and now things will get better and better! Way to go !

 

Heath  :smitten:

[[Va...]]

Way to go MiYu! My go to therapy is driving. 

[[He...]]

So it's Friday night and I am still in pain.wondering if it's not wdsx,  but maybe arthritis in my spine or a disc? I have a history of spine problems.

 

But isn't it  strange how  one thing comes and another goes away? And things keep chsnging all the time? Now that makes me think it is withdrawal.  Oh I just don't  know! I give up. Just wish this back pain would go away !!

 

Heath

[[Da...]]

This month has been truly awful for me. I had all these issues before Benzos which is the scary thing, it was the main catalyst.

 

In a nutshell:

 

Started on Thursday. Thursday night was absolute agony, various different types of pain in my abdomen all at once, flow was so heavy I was pretty much hemorrhaging (TMI I know sorry lol), easily level 10 on pain scale and the 'vibrating insides' thing I get when my inner vibrations move into my lower abdomen at period time, was extreme, felt like my innards were boiling in a huge vat of oil. Pain was so bad I felt delirious and considered going to the hospital at one point, but what will they do? 'drug addicts' aren't supposed to complain about pain. It'd just have resulted in me being reported to the addiction agency for 'drug seeking'. Pain went down to about an 8 around 4am and I managed to go to sleep for a bit. Woke up in agony again, felt like I had full blown flu, too weak to move, white as a ghost and felt very faint. All in all, one absolutely horrible day and night.

 

Friday, felt very, very weak, very ill, still in severe pain. I was in bed all day yesterday and couldn't even make it into another room. Still very white, innards still boiling, flow very heavy.

 

Today, still feeling very drained and weak, flow still very heavy. I am wondering what impact WD is actually having, since this is all part of a massive, mysterious, pre existing issue. I doubt WD is helping, and the monthly episodes of 'boiling insides' are certainly from WD, but I do think a lot of my pre existing issues are coming back. Nobody believes me though, and it's a huge concern, especially as I'm only 30 and facing a good few more years of this.

[[Va...]]

So it's Friday night and I am still in pain.wondering if it's not wdsx,  but maybe arthritis in my spine or a disc? I have a history of spine problems.

 

But isn't it  strange how  one thing comes and another goes away? And things keep chsnging all the time? Now that makes me think it is withdrawal.  Oh I just don't  know! I give up. Just wish this back pain would go away !!

 

Heath

I'm with you on the back pain Heath. I think it may be a little of both. In my case, I have a spinal condition which is worsened by withdrawal. I believe withdrawal makes any other health conditions we have worse. Hope you feel better soon! --V

[[Me...]]

I would like to join please. Due to the long length of time doctors have had me on benzos, I feel a slow taper with holds would be best for me as I tend to get many intense symptoms and don't want to have to dose up. I feel I could use the support of others here. I am new at finding my way through this benzo craze maze. Thank you.