Valium/Diazepam Support Group

[[Ma...]]

Mary5588,  did the sedation eventually go away?

 

LH, it was months for my body to adjust to Valium.  Runningbook is exactly right.  Everyone has their own experience.  Since your morning dose is so unpleasant, that would probably be the dose I started with.  Once you have moved all 4, it will be pretty easy to adjust to 3 because Valium has such a long half life.  I did 3 for a long time, then cut to 2.  At 6 mgs now and wondering when to go to 1.  Probably be awhile.  You lead your crossover if possible.  The 8 weeks maybe enough, only you can tell, and don't be afraid to speak up if you need more time.  You are saying you feel pretty bad right now, so going slow and listening to your body, may save you a rough crossover.  Once you have crossed, hold a few weeks before starting to taper.  Your body will still be reacting to the loss off the Ativan.  Give your brain and central nervous system a chance to calm down.  Then begin your taper.

Valium is different than most benzo's.  It has 3 different metabolites, all with different half lives and what they are for.  1 is for muscles, 2 is for sleep, and 3 is for anxiety.  So many people do great on it and a lot struggle.  Learn all you can, research in search engine, ask questions and we will all be here to help. 

[[Ni...]]

I'm having a hard time tapering off just 1 mg of valium per 2 weeks, is this because of my cold turkey for 4 days? I get severe physical anxiety everyday. Walks help.

 

[[Be...]]

Well, after finding I was underdosd, and having to updose, I am feeling much better. It's been almost 2 months since I had to updose. Other than sleep issues, I'm feeling pretty good, and I do think I'm stable enough to start cutting once I see the nurse practitioner next week. So many bumps in the road, tapered too fast the 1st time, reinstated to try again, waited 2 months to stabilize, made  a .5 mg cut that proved disastrous, learned from some wise sages on BB I was crossed over to the wrong dose, updosed, but not to the full amount, because my provider and I agreed I'd already  detoxed some. So instead of the Ashton recommended 20 mg, or the 16 mg the calculaters stated, we went with 15.

 

I fretted about lost and wasted time. My provider never tapered anyone off a benzo before. But she is eager to learn, and assist me. She has a copy of the Ashton Manual I sent by PDF using the patient portal. Last appt she told me she was still reading it. If we had crossed me over to 20 mg, I would have been possibly down to maybe 13 mg now. So I realize 15 mg isn't that much more, and it isn't as dour as it had seemed when I updosed. I've still been on benzos for a total of less than two years, 15 months of that on Klonopin. I admire those of you who've been taking this stuff 10 or 20 or more years. Tapering for 5 or more years of rediculously high doses.

 

I realize I don't have it as bad as many others, and I'm determined to do this. I fought hard to get the Investigational New Drug, Netazepide, from the kind folks at the small research facility in London, UK, so I could finally get off my long-term Proton Pump Inhibitor use and end the hypomagnesemia nightmare. As sick as I was, I was contacting my congressman, working with the FDA for approval, in regular contact with the faciility in the UK (who agreed to help me), their MHRA (Medicine and Health Regulatory Agency), for the span of 8 months, when that precious medicine finally arrived in the US.

 

I still don't even know how I accomplished all that, with frequents hospital visits for infusions, being constantly sick, struggling to function day to day. I qualified for a Direct Care Worker and a Support Peer, which I still have. Insurance covers it, and my social worker and caseworker agree I still need these services while dealing with the Benzos, though the hypomagnesemia is now resolved. I live alone and have no other support but the workers. Most of my family lives too far away. The workers help clean the house, take me shopping, provide socialization and companionship.

 

I know I can do this. I'm going to do this. I got off of opiates after 20 years of use for chronic intractable pain, and I did ail alone, on my own, and am 100% free. Not even methadone or suboxone. I went through a year of PAWS after my last dose.

 

As it says below my avatar, "Onward and upward!".

[[Be...]]

I'm having a hard time tapering off just 1 mg of valium per 2 weeks, is this because of my cold turkey for 4 days? I get severe physical anxiety everyday. Walks help.

 

I'd suggest you hold and not make any more cuts until you stabilize. You clearly are not stable. It may take you longer to stabilize due to going C/T for 4 days.  Next, when you are stable (and your body will tell you), try a smaller cut like .5 mg instead of 1 mg. You may find a smaller cut easier to adjust to. If you find you can handle the .5 mg, you can reconsider going back up to 1 mg. Many have advised me that this is a marathon, not a race. Go slow and listen to your body. The fact you are having daily physical anxiety is your body saying "Stop!" "Hold" "Stabilize" The idea is to taper at a rate that minimizes your symptoms.

[[Ni...]]

I'm having a hard time tapering off just 1 mg of valium per 2 weeks, is this because of my cold turkey for 4 days? I get severe physical anxiety everyday. Walks help.

 

I'd suggest you hold and not make any more cuts until you stabilize. You clearly are not stable. It may take you longer to stabilize due to going C/T for 4 days.  Next, when you are stable (and your body will tell you), try a smaller cut like .5 mg instead of 1 mg. You may find a smaller cut easier to adjust to. If you find you can handle the .5 mg, you can reconsider going back up to 1 mg. Many have advised me that this is a marathon, not a race. Go slow and listen to your body. The fact you are having daily physical anxiety is your body saying "Stop!" "Hold" "Stabilize" The idea is to taper at a rate that minimizes your symptoms.

The thing is I went cold turkey for 4 days and then reinstated maybe 9 months ago. So is that still affecting me?

And would holding for a month be enough?

[[Ma...]]

BL!!  It is so good to hear from you my friend.  You sound so much better.  It is great hearing how you have progressed.  I am so glad you came back and we can travel this road together.  It wonderful you have that extra help at home to give you support  ..  please keep us posted on how you are doing.

Mary 🙋🏼🙋🏼🙋🏼😘😘🙏😘🙏😷😷😷

[[Be...]]

The thing is I went cold turkey for 4 days and then reinstated maybe 9 months ago. So is that still affecting me?

And would holding for a month be enough?

 

That's pretty far back, so no, I don't think it's still affecting you. As for how long to hold, I think most would agree with me that there is no rule as to how long. Tapering is symptom based. And we each respond differently. Maybe you just can't handle the 1 mg cuts every two weeks. You might need to reduce your cut to .5 mg, or you may need to hold longer after cuts. There is a Long Hold Support group on this forum, the members of this group are ones who find they need to hold longer until they stabilized. Some have held for several months. As long as you are having the strong physical anxiety, you clearly aren't stable. So you need to hold until you are stable and your symptoms are manageable. It might be a month, it might be longer. Only you know, because it's based on how you feel.

[[Be...]]

BL!!  It is so good to hear from you my friend.  You sound so much better.  It is great hearing how you have progressed.  I am so glad you came back and we can travel this road together.  It wonderful you have that extra help at home to give you support  ..  please keep us posted on how you are doing.

Mary 🙋🏼🙋🏼🙋🏼😘😘🙏😘🙏😷😷😷

 

 

I'll keep in touch. Hoping all goes well with my appt next week with the Nurse Practitioner. I know I've been kinda quiet, not really needing this thread since I'm not even tapering. Hard waiting two months for that Valium to build up.

[[Ru...]]

I just converted from 1mg of Xanax to 10mg of Valium and feel fine.  I had one morning of a bit of anxiety and then it was gone.

 

I take 2mg of Valium at 8am, noon and 4pm and then 4mg at 9pm before bed.  What’s the best way to taper from here?  What has worked for a smooth landing off Valium?

 

Looking to hear some success stories and advice.

 

[[Mo...]]

Benzolottie,

Glad to hear you have stabilized.  It's good to hear you talk about your struggles with PPIs.  I also dealt with them.  I know they have helped some but a friend and I like to joke that benzo's are the devil and PPIs are demons.  I was only on for about 10 days of Prilosec for gastritis (it caused me horrible depression and insomnia) and when I went off, I got horrible heartburn and esophagus pain that led me down a very painful and dark time (reinstating on Protonix, 2 endoscopes and numerous acid reflux tests), all while also dealing with benzo related issues.  I got down to 102 pounds and really thought I was going to die.  Even went to Mayo because of all of it and when I went off, I went into severe benzo w/d (I'm pretty sure that it was interacting).  Anyhow, I looked into that medicine you were able to take and am amazed you were able to get it.  It sounds like you are on your way to better health!   

 

RunningBook,

Glad to hear you are doing well with the Valium.  I started off with just pills but then when I started micro tapering, I used mostly pills and a small amount of liquid Valium prescription (1mg/1ML).  Then, as I got lower, I started replacing more of my pill dose with the liquid medicine until at about 3 mg, I was completely on the liquid.  For me, it now takes me 120 days to reduce 1mg (reducing .01 per day and holding 2 days).  I have slowed down a few times as I have went along. 

[[Ni...]]

The thing is I went cold turkey for 4 days and then reinstated maybe 9 months ago. So is that still affecting me?

And would holding for a month be enough?

 

That's pretty far back, so no, I don't think it's still affecting you. As for how long to hold, I think most would agree with me that there is no rule as to how long. Tapering is symptom based. And we each respond differently. Maybe you just can't handle the 1 mg cuts every two weeks. You might need to reduce your cut to .5 mg, or you may need to hold longer after cuts. There is a Long Hold Support group on this forum, the members of this group are ones who find they need to hold longer until they stabilized. Some have held for several months. As long as you are having the strong physical anxiety, you clearly aren't stable. So you need to hold until you are stable and your symptoms are manageable. It might be a month, it might be longer. Only you know, because it's based on how you feel.

Thank you, I posted in the long hold group.

 

I got another question, is being on even doses important to keep symptoms at bay?

 

And to taper off 1 mg of valium a week is too fast right?

[[Be...]]

Benzolottie,

Glad to hear you have stabilized.  It's good to hear you talk about your struggles with PPIs.  I also dealt with them.  I know they have helped some but a friend and I like to joke that benzo's are the devil and PPIs are demons.  I was only on for about 10 days of Prilosec for gastritis (it caused me horrible depression and insomnia) and when I went off, I got horrible heartburn and esophagus pain that led me down a very painful and dark time (reinstating on Protonix, 2 endoscopes and numerous acid reflux tests), all while also dealing with benzo related issues.  I got down to 102 pounds and really thought I was going to die.  Even went to Mayo because of all of it and when I went off, I went into severe benzo w/d (I'm pretty sure that it was interacting).  Anyhow, I looked into that medicine you were able to take and am amazed you were able to get it.  It sounds like you are on your way to better health!   

 

 

"PPIs are demons' sounds about right. How long were you on Protonix, and how did you get off? I'd forgotten how many attempts I made to get off Protonix, I'd get RAHS (Rebound Acid Hypersecretion) every time. So much acid it felt like fire burning my insides, nose, throat, ears and sinuses. Sad thing is I never needed them for acid problems, the company lied and told my doctor that they would protect her patients taking NSAIDS from ulcers. I had a full GI workup and there was nothing wrong with me. The FDA sued the manufacturer and got a cool 5 million for promoting unauthorised off-label use. I've been told I have a tort case and should sue them. Hypomagnesemia is listed in the black box warnings for these drugs, along with a few other things, about 7 years ago.  It was a lot of work to get the Netazepide, but regulating agencies and medical professionals were all in agreement that I must get it.

[[Mo...]]

I was on for a total of 7 months. I felt burning while I was on it, in large part because it dried me out like crazy.  I have an attorney friend who wanted to consider a lawsuit against the manufacturer but I was only ever on the generic and to my knowledge, you can't sue.

[[Lu...]]

I’ve been on a ppi for over 10 years.  I have a sliding hietal hernia causing gerd.  I’m on 30mg prevacid.  How do I get off without causing gastro issues?

[[Be...]]

I was on for a total of 7 months. I felt burning while I was on it, in large part because it dried me out like crazy.  I have an attorney friend who wanted to consider a lawsuit against the manufacturer but I was only ever on the generic and to my knowledge, you can't sue.

 

You were seriously dependent on it it after 7 months. You can become tolerant after taking it a while. You likely were having RAHS due to tolerance. I was on it for over a decade, and it was the name brand Protonix. Guess i'm lawyer searching. I'm amazed you managed to get off after 7 months.

[[Mo...]]

I had rebound reflux after only 10 days on the Prilosec and I also never had reflux or heartburn before I was on it. Somehow, I ended up with Grade C esophagitis.  I was EXTREMELY concerned about being able to get off the Protonix but I knew I had to. I did all kinds of tests at MAYO while on it and they said it wasn't even working very well. In other words, the refux episodes I had during testing were still acidic. Nonetheless, it was not an easy ride to get off and it was interacting with the Klonopin and I went into severe withdrawals when I started tapering the Protonix.

 

Lunkhead, I would worry about that after your benzo taper. But keep in mind that PPIs can cause anxiety and depression in some and perhaps this is part of your cause.... Consider getting off after, if you are able. I know my neighbor has no choice. He has a hiatal hernia, had the fundo surgery and still has terrible reflux.  He's not overweight and eats well.

[[Be...]]

I’ve been on a ppi for over 10 years.  I have a sliding hietal hernia causing gerd.  I’m on 30mg prevacid.  How do I get off without causing gastro issues?

 

 

You can't. It's nearly impossible because you can't split pills. I've know of people getting off using the capsules, by opening the capsule, removing one sphere, and after 2 to 4 weeks, removing two (most waited 4 weeks). And continuing to remove spheres increasing by 1 every 2 to 4 weeks. One guy did this with his generic omeprazole, and it took him well over a year to get down to taking only one lousy sphere, before he stopped. He had RAHS, but it wasn't as bad as mine. If you haven't already, the prescribing doctor should be running regular tests for kidney function, a CBC, Basic Metabolic Profile and magnesium and other nutrient levels such as B12.

 

Netazepide would be the solution, but getting it is very difficult, unless you have a PPI use related health condition. Since my hypomagnesemia was caused by the PPI use, and I was critically ill, the FDA permitted me to get it. It was supposed to be in Phase 3 trials, but COVID has delayed that. The goal was to have it available by prescription within 3 years. As of now, it has only completed Phase 2 trials.

 

I would not try tapering your PPI until after you are benzo free. If Prevacid is a casule full of tiny spheres, you could do what the guy I mentioned above did, once you are benzo free. If you Have abnormal lab results showing PPI-related issues, you could go through a grueling long process of obtaining Netazepide. But the place I got it from is currently shut down, their staff are helping with the Oxford vaccine for COVID. There isn't anybody there right now.

 

I wish I could give you better information.

 

And we've gotten off-topic, so back to the Valium/Diazepam discussion. 

[[Be...]]

I had rebound reflux after only 10 days on the Prilosec and I also never had reflux or heartburn before I was on it.  Nonetheless, it was not an easy ride to get off and it was interacting with the Klonopin and I went into severe withdrawals when I started tapering the Protonix.

 

 

I can't imagine dealing with Klonopin and a PPI at the same time. But you are off the PPI, a difficult as it was.

[[Ho...]]

Hi Guys,

 

My name is Hoops, and I wanted to introduce myself after being linked to your thread.

 

My Benzo history consists of 1mg K > 20mg Diazepam in October 2019. Currently taking 15mg Valium doing dry taper.

I've had a lot of difficulty during my Benzo Taper, mostly the side affects of not sleeping, missing a constant routine and not being able to go as fast as i would like to.

 

I have a question here. Are many of you able to work (earning or learning) during your taper journey ?

 

[[Mo...]]

Hi Hoops,

Welcome.  I'm not able to work.  I had to quit in the summer of 2019 as I was having severe w/d symptoms at that time.  I since c/o to Valium and I'm better but not enough for working.  I know many do and can, however, even if it's super hard for them. 

[[Be...]]

 

Thank you, I posted in the long hold group.

 

I got another question, is being on even doses important to keep symptoms at bay?

 

And to taper off 1 mg of valium a week is too fast right?

 

Sorry, git caught up in the PPI discussion and overlooked this.

 

Not with Valium, Valium has an extremely long half-life. 

 

As to your second question, Ashton manual suggests 10 to 14 days, 1 week is too fast. 2 weeks is the best. I made the mistake of tapering too fast, and failed. And I had practically no symptoms during the fast taper, didn't really hit me until I was off. And then it hit me bad. I had to reinstate and start all over again. With your symptoms, you should be tapering a lot slower, minimum 14 days, or longer, until you stabilize. Going too fast will just set you back, and you'll end up updosing, slowing the taper down, and starting all over again, which will set you back months. Slowwwwww downnnnn.

[[Ji...]]

Hi Guys,

 

My name is Hoops, and I wanted to introduce myself after being linked to your thread.

 

My Benzo history consists of 1mg K > 20mg Diazepam in October 2019. Currently taking 15mg Valium doing dry taper.

I've had a lot of difficulty during my Benzo Taper, mostly the side affects of not sleeping, missing a constant routine and not being able to go as fast as i would like to.

 

I have a question here. Are many of you able to work (earning or learning) during your taper journey ?

 

I have had to work and hence the slow taper.

 

Ironically now that I am finished, and Bitcoin is doing so well, I can take it a bit easier. All the best.

[[Lu...]]

If you can’t work, what do you do for income?  Can you file for long term disability?

[[Be...]]

 

 

I have a question here. Are many of you able to work (earning or learning) during your taper journey ?

 

 

I have been on Social Securiity Disability Insurance since 1993 (TY Drunk Driver!), so thankfully I haven't had to deal with that isue. But to be honest, I don't think I could during taper. I admire those who do, sadly some have no choice. Slowing down the taper has enabled them to continue working. Slower taper, less W/D effects, I think.

[[Be...]]

If you can’t work, what do you do for income?  Can you file for long term disability?

 

Some BB members have, from what I've read. A few even went on SSDI for several years.