Low dose long term benzo use has own syndrome doctor says

[[sa...]]

I spoke to a Dr. who helps benzo users. He said that the doctor who started the Haight Ashbury Free Clinic way back when studied long term low dose benzo use. He discovered it is HARDER to come off low dose/long term than higher doses. The doc I spoke to didn't know why exactly, but he said his patients who have been on low doses have more irritability, anxiety, depression, fatigue and weakness than those coming off of higher doses.

His protocol is a super slow taper with pheno. He claims success, but it takes time as we all know.

 

I am going in to see him to talk about his protoctol and learn more. I'll try to find the research paper he referred to.

 

Not sure I want the pheno route, but I want to hear what he has to say about his experiences with low dose long term users.

At least he did say they went on to heal, even though it took longer usually than people at higher doses.

 

I don't know if I posted this in the right place. Please move if need be.

 

 

[[Ho...]]

Thank Sammy for posting this - please let us know what he has to say.....I wonder how long is a long time?  How did you find him and whereis he located?

[[Li...]]

I will also be interested in the info on this!

[[sa...]]

I called Sequoia Center in Redwood City. They gave me the name of three doctors who work with benzo tapers.

 

He was the first who called back.

I was curious to find someone who could maybe move me over to librium as I don't tolerate valium.

He told me about the research paper. I'll try to find it.

 

At least now it makes sense why I was SO sick and bedridden before I upped my dose a wee bit.

 

I'll keep everyone posted as to what he and the other docs have to say.

[[va...]]

Make sure you find out what his definition of "super slow" actually is. Very important as many use the pheno for rapid tapers over a few weeks calling that a long taper as it is longer than a few days. In their mind a rapid is slow. Just FYI. And best of luck with this. It will be interesting to see what they have to say.

[[Pa...]]

Hi Guys,

 

I moved this to Chewing the Fat because it seemed more informational rather than a request for support, but it's interesting reading for sure.

 

Pam

[[sa...]]

Thanks Pam for putting this in its proper place.

 

One of the other docs called and I am going to work with her.

She was AMAZING!! I hope and PRAY she doesn't disappoint.

 

She asked me questions no other doc has asked, and this was just a first sniff each other butts phone call!!

She asked why I was put on the drug, why I had never (or had I?) tried to come off, why now, what will my life look like not on the drug, what are my plans if the original disorder comes back, and what is going on in my life now that will help or hurt me coming off. She underscored the need for my emotional safety working with her as I went through this journey. She GETS it!! Or so it seems.

 

She has been helping people for 35 years get off pysch meds. She has various protocols but said every person is different she and the patient work together to create a plan. There is no one cookie cutter approach she said, which was a relief to hear.

 

I am elated to have *hopefully* found a doc who understands how hard this beast is to tame. I know that I still have challenges ahead, but how wonderful to have a doc on board who understands this will be as she put it, a spiritual and psychological journey.

I told her I am trying to get off one psych drug and dont want to end up on a cocktail of them to do so.

 

I'll keep you all posted. Hopefully she has some wisdom to help reduce the suffering, if at all possible.

 

 

 

 

[[li...]]

Incredibly interesting!!  Would love to hear more as you find out more!  I do wonder what they determine as "long term" and what the research paper is that they refer to.  I'd love to print it up to bring to my docs and show my family and close friends so they understand more of what we are going through.  I did think that getting off of 1mg would be easier than a higher does, but it's TOUGH!!!

 

My best to all of you out there in BB!

 

Lisa

[[Ho...]]

Sammy - what is the Sequoia Center?  I need to find a similar place like it, here in PA.

[[Ho...]]

Sammy - never mind - I googled it and found it....good luck with your treatment.  I don't think they would consider someone like me who is almost 9 months benzo-free but still suffering....

[[va...]]

Well, I googled the clinic too. I am always curious when I hear of clinics that say they understand benzodiazipines. I do understand your hopefulness after talking to a doctor that says they get it. That said, I have never heard of the theory low doses being harder to come off than high doses. I don't see that pattern on the boards either. And their program is modeled after "addiction programs." You should ask specifically how they do their taper for benzos.

 

There are many clinics that charge a fortune for benzo detox. (Florida Detox 30K)They have success rates with opiates, heroin, that kind of thing but know nothing about benzodiazipines.

 

Many bring the family in much like this one to discuss the particular family members addictive personality and how their addiction impacts the family. Their understanding for benzo reinstatement is based on "relapse" because of an addictive personality. We all know most benzodiazipine people reinstate to combat withdrawal symptoms, nothing to do with having an addictive personality. But they don't understand benzowithdrawal.

 

Therefore they don't understand withdrawal anxiety or the length of withdrawal anxiety for some, and they then say withdrawal anxiety is a patients underlying condition resurfacing. (That is if you were put on for anxiety.)

 

Please make sure you ask the right questions as what I've listed above is unfortunately the pattern with detox centers SPECIFICALLY in regards to benzodiazipines. Expensive and no benzo knowledge. I'd be wary.

[[sa...]]

It never hurts to call. I can send you the phone number.

[[sa...]]

The doctor I am working with is not at the clinic. The nurse at the clinic said they work with all types of benzo users and was educated that some people abuse them for the thrill (Steve Tyler for example) and others like us are addicted because we were put on them by our doctors. I know we are all Leary of docs and clinics but there must a few that understand. The nurse at the clinic said detox would not be good for me and suggested the three docs and an at home slow taper.

[[...]]

Thanks Pam for putting this in its proper place.

 

One of the other docs called and I am going to work with her.

She was AMAZING!! I hope and PRAY she doesn't disappoint.

 

She asked me questions no other doc has asked, and this was just a first sniff each other butts phone call!!

She asked why I was put on the drug, why I had never (or had I?) tried to come off, why now, what will my life look like not on the drug, what are my plans if the original disorder comes back, and what is going on in my life now that will help or hurt me coming off. She underscored the need for my emotional safety working with her as I went through this journey. She GETS it!! Or so it seems.

 

She has been helping people for 35 years get off pysch meds. She has various protocols but said every person is different she and the patient work together to create a plan. There is no one cookie cutter approach she said, which was a relief to hear.

 

I am elated to have *hopefully* found a doc who understands how hard this beast is to tame. I know that I still have challenges ahead, but how wonderful to have a doc on board who understands this will be as she put it, a spiritual and psychological journey.

I told her I am trying to get off one psych drug and dont want to end up on a cocktail of them to do so.

 

I'll keep you all posted. Hopefully she has some wisdom to help reduce the suffering, if at all possible.

 

 

 

 

[[va...]]

Hi Sammycat, that sounds hopeful that they would recommend a slow at home taper, and that they understand people that are addicted by doctors as well. I actually did call with some questions but it's busy. I sent an email with questions. I'll try calling again. It would be a great thing if some are understanding this process.

[[sa...]]

At Sequoia Center in Redwood city, 650 364 5504  I spoke to a nurse named Leslie.

 

The detox protocol there is to use depakote to keep seizures down.  You stay on it awhile then taper. It helps supposedly with anxiety etc.  I don't like that drug and wouldn't touch it.

But Leslie understood that we are not all "addicts" and gave me the name of three docs who help detox at home.

 

I spoke to two. One stood out head and shoulders above the rest. She seems to understand the long and painful process of benzo wd and sounds like she wants to make sure that once off the drug there are things in place (cbt for example) to help cope with life sans benzos. For me, that sounds amazing as i was crippled by my anxiety 18 years ago and the fear is it will return. Wont do me much good to be benzo free if I cant leave the house or cope with life.

 

Understand most detox places just get you off the drug. But that is what detox is supposed to do. Get the drug out of your system. So it is up to the consumer to know that benzo detox is more complicated that simply ridding the brain/body of the drug.

 

I am not doing the detox at the center. I don't believe I need it. I think I can taper, with the help and support of a good doctor. I know I most likely would benefit from therapy as I go through a taper again. I was fairly traumatized  by the time I got down to .3  Like to avoid that.

 

One thing to think about. We focus SO much on being drug free that we may be missing thinking about how we will cope once the drug is gone, or even how to best cope tapering. I know so many of us push push push as we want off the drug so badly but then we end up being sicker than we have to be.

 

I'm looking for a more healthy approach to my taper this time. I want to succeed and go on to live a happy fulfilled life with as little anxiety as possible.

[[va...]]

It's great that they will place support along the way for you and it's not just about the drug removal. Yes, I am a big advocate of slow tapering. I have a friend who's mantra is "not center my life around tapering but rather live my life as I taper." It can't always be like that, but perhaps it can be close for some if started out the right way and not push push push as you said.

 

Good luck!

[[...]]

Sammycat,

 

Please take advice from someone who has been dealing with benzo withdrawal for almost two years, who has spent in excess of $100,000 on treatment looking for relief, and who has spoken to literally dozens of "experts" on the subject who claim they know the "right way" to do this.

 

1) saying that a low dose is harder to withdraw from than a larger dose makes no sense at all and simply does not fit with the reality of what you can observe on this board and elsewhere, nor with the many years of practical research and wisdom that has been devoted to the subject.

 

2) tapering with phenobarbital is like using percocet to kick a heroin addiction.  I tapered with pheno and it messed me up bad when I came off it.  The only thing this does for you is provides some psychological boost to know you are "off" benzos, but you have really just switched to another cross tolerant drug.

 

3) if you need depakote to protect from seizure, then there is something majorly flawed with the protocol.  People who do slow, direct tapers from benzodiazepines do not have seizures.

 

4) there is NO WAY possible to avoid withdrawal, but you can lessen the intensity by doing things the correct, proven way - that is, tapering off slowly over many months.  Any other method is going to magnify and prolong the symptoms and leave you with less money in your bank account.

[[sa...]]

Thanks Ryan,

appreciate the reply. I agree that depakote is not the way to go. I would never consider it.

I am hoping to do a very slow taper and just have my docs support. I was really doing my first taper on my own, as my doc told me to slam off 1 mg of klon in four to 6 weeks. I made it down to .5 and was SICK  the rest of the taper was a nightmare.. bedridden etc.

 

I need a doc who KNOWS and understands who sick one can get from this and who will help me stay the course. I told her I don't want to end up on a handful of psych meds trying to get off one. I take NO OTHER Meds of any kind other than klon.

 

She may want to try to move me over to Valium or Librium. I am ok with that. She may want to add an SSRI.. if the depression I had when I was down to .3 would be helped by that, then so be it. I was almost suicidal. But hopefully a super slow ride down,  I mean maybe a year and a half.. to gte off of .8 which is where I am now I think... 7.5..will help me. Ive been on this stuff for 18 years. I cant expect to jump off in two months as my first doc wanted.

 

Also, I personally need some therapy to adjust to life without benzos something this new doc will address. I KNOW i have psychological dependency on them.  after 18 years it is scary to think i wont have a safety net should I get panicky. I stopped drinking too... so I have NOthING to iron out the rough spots. I have to learn to cope with life without swallowing a pill. Thats part of her help.

 

thanks for sharing your experience. Appreciate it.

 

 

[[Gr...]]

Hi Sammy,

 

My neighbor to the north. I was drawn to "Chewing the Fat" earlier for the sake of checking out another aspect of the forum, and found your post and was drawn to it because of you.

 

Good to hear that you have found a doctor who is supportive and is focused on helping you to learn about coping with life without benzos. I appreciated what you said about:

 

One thing to think about. We focus SO much on being drug free that we may be missing thinking about how we will cope once the drug is gone, or even how to best cope tapering. I know so many of us push push push as we want off the drug so badly but then we end up being sicker than we have to be.

 

I'm looking for a more healthy approach to my taper this time. I want to succeed and go on to live a happy fulfilled life with as little anxiety as possible.

 

I am working on doing this during my taper and am grateful for BB and having found Ashton and the support here toward taper, as well as having a tool box of coping tools that I have been developing for myself over the years including yoga and such. I took the easy way out to deal with insomnia; no doctor forced it on me, so it was my call. And, I am a recovering addict, but managed not to abuse the Ambien, Valium or temazepam I alternated over the past several years, but nonetheless became dependent.

 

I wish that you could change the title of this thread to something other than what it is; something to do with coping with withdrawal in general, with emphasis on the word "coping", since it's not so much about that one particular fact that you were told from the one doctor you talked to (about "low-dose long-term use being harder to come off of..."), which I understand is a curious and interesting thing for him to have said, but it seems to me to be away from your point and misleading, or confusing, or something. Or, it could just be me.

 

Anyway... thank you for being here and for sharing. I will check out the Sequoia Inst. web site, and see what they post, and may call them for add'l. info. re: coping.

 

I am fortunate to have a therapist who is m.counselor to hubs and me, who sees us together and individually and who is giving us great support in our taper and toward being benzo free, and so is the pdoc who I see who I do hypnotherapy with. I have support from 12-step friends as well, and do many healthful things overall... all things considered.

 

I wish you all the best in your complete tapering and in finding the support you need to help you in coping with life during your taper and toward being benzo free, Sammy.

 

Peace and blessings,

 

Grace Seeker~

[[Le...]]

Dear Sammycat,

 

I am glad to have this confirmed (once again) since I am experiencing this myself. My original dose was 3 mg Lexotan (equals 5.4 mg diazepam) for 16 years. I thought it was 14 years but I was wrong - 16 it was.

 

(During this time I have been suffering from tolerance withdrawal symptoms)

 

Now, after more than 3 months of tapering (and one severe bump in the road, when I thought this was just a piece of cake and lowered the dose to fast and got arrhythmia with an ambulance and the works ) I have been taking 2.25 mg for 3 weeks and since I experienced sth close to tolerance yesterday, I am now going to reduce my daily dose to down to 1.90 or 2.0 mg starting tomorrow. And now I know what to expect, so I trust it will not be as scary as before.

 

I read here at the forum that potassium deficiency could be the cause of palpitations and since I had no bananas at the house, bananas are high in potassium and were recommended, I just googled potassium rich food and found a list over such food.

I had some of the food listed and chose to try 100 g of raisins - and half an hour my pulse rate was back to normal.

 

I am an encyclopedia of intolerance and I have found it very helpful to start each day with a bowl of porridge (water based) salted with sea salt and sweetened with algave syrup (and grated coconut when I crave for sth sweet) and I also have a small helping of this every night before I go to sleep. This really helps and stabilizes the blood sugar and prevents the unpleasant adrenalin and histamine flushes/surges, that have been my main problem.

I eat mainly organic food, but I can not imagine that people used to eating "ordinary" food need to change from that.  What is a little pestercide to a system that is used to benzos???!!!  

 

And lay off the milk, you who have not figured out that milk is not for grown-ups and can add severly to the nasty digestive symptoms most of us taperers know so well (google histamin releasing food).

I was originally given Lexotan to lessen symptoms that turned out to be nothing more than lactose intolerance! And 2 mg polaramine (a mild dose of a total histamin blocker) help with those. ...and amazingly enough it also helps with the surges and flushes of histamin and adrenalin experienced by many during tapering and withdrawal.

 

Best of luck to you all!  

 

Lexotania