May need to detox...any advice?

Today marks the 1 year anniversary of when I began to taper from benzos prescribed to me for 4 mos due to tinnitus.  I went into tolerance and began to experience side effects and adverse events almost immediately.  I was also abruptly discontinued from Celexa about the time I started benzos with no tapering by a nurse practitioner that was not educated on SSRI discontinuation.

 

Last summer about this time I began to experience severe muscle pain that Mayo Clinic eventually Dx'd as myofascial pain syndrome.  I believe this is linked to benzo withdrawal or was at least triggered by it.  The pain is 24/7 and gets so bad that I nearly black out from it.  I have tried hydrocodone, flexeril, tramodol, tinazadine, oxycodone and all the OTC meds.  None are effective.  Physical therapists and Myofascial pain experts are baffled at the severity of my pain and have never seen muscle stiffness and rigidity like I have.  Right now my sternoclidomastoid muscle in my neck is so tight that me head is turned, ear is in pain and my eye socket is being tugged so hard it is causing my left eye to close.  No Dr has even remotely considered this to be benzo related or accepted the fact I can't simply stop from such a low dose.  I am about to have a series of trigger point injections in a couple weeks.  I will likely need a neck brace soon.  18 mos ago I was running 5 miles a day, mountain biking, fly fishing and today I can barely walk and can't even recognize myself in a mirror.  The only muscles I have left are coiled up into tight bands and my skin looks like that of an 80 year old.  Drs have simply said I need to learn to live with pain and sent me to a deep breathing class.  That is all they have to offer.

 

I have to get off the Valium and simply can't..  I am at 1.9 mg and cannot endure another 4-5 mos of epic suffering in severe tolerance.  I don't think I can make another cut.  I can barely walk today and dress myself.  I can't see well enough to drive. This has gotten out of hand.  I have no quality of life.  I have read stories on here of people that have C/T from huge doses of these drugs and are not suffering this badly. While I admire the people on BB who are micro tapering and making it I guess I just wasn't born with that skill set. I can't work and my family has basically lost a husband and father who is unable to do anything or participate in life.

 

I can no longer live in pain on an 8/10+ scale and simply can't keep trying to taper for week after week and months on end with no relief from the neurotoxic poisoning.  I do not think I will ever heal from the damage.

 

Can someone suggest a hospital or detox center in the U.S.?  I am considering the Coleman Institues Flumazenil protocol.  Cost is not an option at this point.  I need to get off the drug as rapidly and safely as possible to get the healing started or find some relief.  Please let me know if there is a good caring facility I can go to. Something has to change as my current regimen is unsuccessful.  Can no longer taper.

 

 

 

 

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Needtoheal,

I completely understand where you are at, suffering many of the same symptoms you have listed and taper weary from 2012.

I will share with you that I have spoken with the directors of inpatient, detox (fully describing the case as iatrogenic) beginning at Mayo who referred me to John Hopkins then to Wisconsin, St Joseph's CD inpatient, the Los Vegas Recovery Centre (specifically for pain management) and was ultimately referred to the Menniger inpatient in Houston Texas.  To a person, non of these facilities were aware of such significant suffering with low dosage usage. All, but the director in Los Vegas, recommended continuing with a gradual, outpatient, slow taper. The director in Los Vegas, upon hearing the history, referred me to Menninger.

 

If you hear of other options, I would be interested in knowing.

 

Good luck,

Marija

 

Do you really think it's the Valium that is causing such muscle pain? I'm so sorry you feel this way. Truly. Valium is a muscle relaxer so I bet the pain will be even worse if you want to detox. But if you really think this is the answer, I earlier on called the Betty Ford Clinic and ask them which is the best detox facility in the country and they said, Sierra de Tucson, in Arizona. I went there and boy, they were right! It's better than the best resorts. Plus you spend a lot of time each day with a psych. They really care about you there. They should, from what they charge. But there aren't a lot of beds and it's for the very rich and celebs so you might have a tough time getting in. They refused me at first and then I demanded to speak with the head psych there and he finally agreed to admit me. If it weren't for the benzos, that would have been a trip to heaven. Make sure to bring your swim trucks and hiking gear. They'll even cut your hair for you and drive you to any doctor you want to see. Good luck in whatever you decide. If you decide you want to go then tell them your whole history. If not, they'll probably say, such a low dose? Do it outpatient. 1-877-941-7618. They will use a holistic approach if that is what you want.

Bets

Do you really think it's the Valium that is causing such muscle pain? I'm so sorry you feel this way. Truly. Valium is a muscle relaxer so I bet the pain will be even worse if you want to detox.

 

I don't know for sure.  When I crossed over to Valium from Klonopin my psych symptoms shot up during the transition but my pain went to near zero within a few days.  Everything just released.  I even started exercising again.  When I got down below 6 it started to came back.  At 4.0 I quit my job since I could not physically function.  The lower I go the worse it gets.  I am also not responding to dry needling or trigger point therapy which usually works well for this diagnosis.  Tizanadine and/or Flexril tend to work well also but I get no relief from either.  I get 24 hours of relief from PT and then everything just locks up again.  I even saw a top specialist in this who told me I have something "systemic" wrong with me.  Mayo said that about a year ago my CNS got reset and is dysregulated.  The neurologist that examined my EEG for neurofeedback said my results were the most down regulated brain wave map he has ever seen and was surprised I could walk at all.

 

Myofascial therapist is telling me that the "small muscles" in my pelvic, shoulder and neck regions are simply not activating...like they are weak and have gone to sleep forcing my major muscles to do all the work against gravity which they are not designed to do. 

 

All of these symptoms began during benzo tolerance and my Pdoc fought me every step of the way when I told him the meds wee causing it.  Dunno.

Is there any cure for it? Sounds more medical to me. Did anyone ever suggest that you might have Fibro? Yours sounds complicated to me. I don't quite understand the entire picture. I'm no doctor. Have you ever tried Soma or Gabapentin?

Bets

I have tried "Gabanothing" and was on 1800 mg.  Soma acts on GABA so avoided it.  I am now down to 600 as it wasn't doing anything.  Mayo discounted fibro.  I think the whole cluster of pain disorders are lazy Dr diagnoses from Drs who don't want to find the underlying cause beyond the usual blood work up.  They simply want to throw Cymbalta, Lyrica or a TCA at you and then head for the golf course.

 

My first symptom was muscle weakness when I started bumping into walls and shit.  When I told my Pdic I wanted off benzos he told me the pain was in my head and I needed to take more Xanax...and that I had an anxiety disorder that was very hard to treat.  That was a year ago.  I asked 4 times for a taper plan and was told no.  If my pain goes away after benzo healing he might need a lawyer.  Had he did what asked I would benzo free now.

 

In late Nov I found a benzo wise Dr who diagnosed severe tolerance, moved me to Valium and is trying her best to help.  She also advises no detox.  All Drs seen have indicated we will not if Valium withdrawal was causing the pain until I come off of it...so hurry up they say.

 

I'm so sorry, I don't have any advice for you.. I just feel deeply for what you're going through and hope that this journey starts to ease up.  you've been in pain long enough.. I'm glad found another doctor though.

 

Have you tried massage to ease the pain a bit?  Or acupuncture?

 

Dont' know if it'll work but it may be something to try. 

Wow. I don't have anything to add other that I'm sorry you're in a so much pain.  How frustrating to go through all those tests and doctors and so on. I hope you get yyour situation figured out soon and get some relief.

I need to get a different methodology for dealing with the muscle pain and tightness.  If it were not for that I would be tapering faster.  Some areas have improved.  My constipation is 75% improved since about 2.4mgs.  Around 2.25 the burning hands and feet outbreaks are basically gone with the exception of some minor issues in the AM that pass after getting up.  I have had a few spotty nights of better sleep too.  My depression is less chemical now and more because of weakness and pain...still very severe though.

 

I read somewhere that only 30% of long time benzo users have the willpower to withdraw successfully.  I can't recall where I saw that stat but it bothered me.  I wish I was a stronger person.

I am so sorry to hear You are not getting any better, as you know I am also in severe pain and it would give me alot of hope to keep goin if I see any of us geting better. I jumped from 5mg of V 28 days ago, yeah I know it's a crazy jump, almost a C/T. I just couldn't take any more cuts and wanted to start healing asap, I wish I could say I am better from pain, but I am not, I gave up on gabapentin aswell, wasnt working at all, I am on Cymbalta 30mg wich is not working either except for depression and I take tramadol/paracetamol twice a day for the pain, but I still feel severe pain and it's spreading. I think our cases are not the same, I don't feel any tightness, in fact my muscles are geting very weak, not responding to any stimulus, I can only go to the bathroom and back to bed, if I ever get out and walk for like 50m(go to doctor and stuff) I suffer an agony the next day that no drug can stop.

 

But like You, it all started or triggered when I started tapering, and it started with huge weakness that turned into pain. In two days my husband is gonna try to talk with my internist and try to talk her into LDN (low dose naltrexone) wich in some cases works miracles on people with chronic pain and it's very very low dose, therefore easier to tolerate, my husband have all his hopes on this.

I am no one to give you any advice, not while I am on so much pain, but even if it doesn't work on me, maybe it does on you, try it, it's a very low dose, some people have experienced huge relieve with this, at least google it.

 

Hugs from Spain Need2Heal, we look forward to your recovery.

Hi, I have been offered a trial of LDN by my physician and may try it.  It seems to have low side effect profile with no addiction potential or tapering required.

 

Good luck with LDN, I really, really wish it works for you, I hope my internist agrees and give me the prescription for it, I don't think we can get the appropiated dose here in Spain, but I think You will have no problem in US, the normal dose for naltrexona is 50mg, and LDN uses 4,5mg but usually starts with doses of 0,5mg. That 1% of a whole pill, it is gonna be crazy hard to get the correct ammount every day, not even sure how will I manage.

Hi, I have been offered a trial of LDN by my physician and may try it.  It seems to have low side effect profile with no addiction potential or tapering required.

 

I say go for it! You have nothing to lose. You have suffered so much and the doctors know s**t, as you found out. The worst thing that can happen is it doesn't work. I really hope there is an end to your pain. As if benzo w/d isn't bad enough. :'(

Needtoheal,

I hope this is successful for you and brings you much needed relief.

Good luck.

 

Marija

I may give it a shot.  Nothing to lose.  There are days when if my my pain was gone I would feel OK.  I'm holding now at 1.9mg and am really going to try and assess whether holding helps at all with pain. If not, then may as well continue the descent.

I need to get a different methodology for dealing with the muscle pain and tightness.  If it were not for that I would be tapering faster.  Some areas have improved.  My constipation is 75% improved since about 2.4mgs.  Around 2.25 the burning hands and feet outbreaks are basically gone with the exception of some minor issues in the AM that pass after getting up.  I have had a few spotty nights of better sleep too.  My depression is less chemical now and more because of weakness and pain...still very severe though.

 

I read somewhere that only 30% of long time benzo users have the willpower to withdraw successfully.  I can't recall where I saw that stat but it bothered me.  I wish I was a stronger person.

 

I replied to a thread of yours today- have you seen it?

Hi, I have been offered a trial of LDN by my physician and may try it.  It seems to have low side effect profile with no addiction potential or tapering required.

 

Did you start the LDN?

What is LDN ?

Low Dose Naltrexone.  My pain is to to myofascial syndrome and LDN is not likely to work for that.  I decided to hold off.