posted
Doc felt hubby was overmedicated. Didn't believe me when I said symptom meds were all that were holding hubby together.
His IV Ativan, IV Phenergan and IV Demerol were all stopped cold turkey in the hospital on Tuesday at 1:40 pm.
Pain doc and psych doc were both overruled regarding discontinuing meds cold turkey. I was also lied to by neuro. No way would I have agreed to admit hubby under those conditions.
Neuro symptoms continue to get worse and worse. Have we hit bottom yet? Any idea how long a withdrawal like this lasts?
Neuro plans to release hubby on this coming Monday. He doesn't know it yet, but there is no way that is going to happen -- will be filing medicare complaint or whatever it takes to keep hubby in the hospital until situation improves.
Hubby has had almost no sleep for 3 nights now. New symptoms of severe headaches and nerve pain. Muscle tremors, myoclonus and muscle rigors continue (close to the worst in the 6 years he has been ill) plus all sorts of new bizarre movement disorder problems.
Encephalopathy symptoms which were reason for admission are gone, but I think hubby and I would both trade those symptoms for the ones he is having now.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
That is so maddening! I am so sorry for your husband. If you can get him back on those meds, and then wean him off slowly if they want him to stop that is the best way, but if they stop cold turkey it took me about eight days to feel better in a similar situation. Eight days of sure hell!
Wow, my heart aches for you both. I have similar nerve and head pain. Before my peripheral nerve stimulators, I was on IV Dilaudid, IV Ativan, IV Benadryl - 75 mg every 4 hours actually REALLY helped with the head/nerve pain.
However, now Lyrica is really helping me with the nerve pain and it's not a narcotic or opiod. Boy, I really hope your doctors start to feel empathy and treat your husband with care and respect.
Why cold turkey?
I am praying for both of you.
In His Care, Jenn
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Bea,
I am so sory to hear that you are having these difficulties. I have never heard of cold turkeying drugs like ativan if they have been taken for a long time. Very bad withdrawl symptoms.
Is this the neurologist in NY that you were to see in December? DR. Y ? I sure hope not!
Oh my gosh, you and hubby are so in my thoughts and prayers.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
That is not right!!! That's a benzodiazepine and withdrawal from that should always be tapered!!! it has one of the worst withdrawals of all drugs- the longest- this is just wiki but is is pretty accurate-
Benzodiazepine withdrawal syndrome is the symptoms seen when a patient, who has taken the drug for a period of time, stops taking the drug. Benzodiazepine withdrawal is best managed by transferring the physically-dependent patient to an equivalent dose of diazepam because it has the longest half-life of all of the benzodiazepines and is available in low-potency, 2-mg tablets, which can be quartered for small dose reductions.[59][60] The speed of benzodiazepine reduction regimes varies from person to person, but is usually 10% every 2-4 weeks. A slow withdrawal, with the patient in control of dosage reductions coupled with reassurance that withdrawal symptoms are temporary, have been found to produce the highest success rates.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Bea,
I was inspired by Sarah's post to do some more research for you.
I found a site for people who have been "recreationally?" addicted to benzodiazepine. It's called www.benzobuddies.org , and perhaps they could lend some help. Here is a quote from their website:
"Cold turkey refers to the abrupt discontinuation of an addictive drug. - This can be an extremely dangerous move! If you have been taking a benzodiazepine at a high dose or for an extended period of time, you could be at risk of withdrawal seizures. The severity of symptoms produced by a `cold turkey' withdrawal off benzodiazepines often leads to resumption of the benzo and the fear of what a withdrawal taper will really be like. Anecdotal evidence suggests that a cold turkey withdrawal can increase the length of the time one might suffer from withdrawal symptoms."
Please let us know how it is going.
Warm regards,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Carol in PA
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Member # 5338
posted
Bea, I'm ready to cry after reading this. I can't believe they would torture your husband by stopping the meds cold turkey.
Listen up people, all of us are in for treatment like this from ignorant docs.
Saying a prayer for you, Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
That's insane. You can die from seizures c-tking off benzos. That is totally INSANE. That could be a malpractice suit.
Posts: 2276 | From united states | Registered: Jun 2004
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tailz
Unregistered
posted
I cold-turkeyed Klonopin on my own after 15 or 16 years when doctors kept requiring I beg to get it, see a counselor for my "psychosomatic tendencies" - one doctor even included "drug addict" as part of my medical record. I made excuses for him initially for personal reasons. I'm not sure how I feel anymore.
I'm guessing though that cold-turkeying a medication like that is not in your husband's best interests and most likely is being carried out to either protect someone or save someone money.
Fight it. Any stress is not good when you have these infections. By the time I stopped my Klonopin though, I don't even think I'd been absorbing the full amount due to chronic diarrhea. My symptoms only increased for maybe a week, as I already had reached my max anxiety threshhold (hell) and had been there for quite some time with the pain, so I couldn't peak much higher. It was hell though, and I wouldn't recommend it.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Real physical withdrawal from benzos lasts up to 18 MONTHS- not kidding, I htink I remember that right. I am a drug & alcohol counselor by profession and took all these classes on psychopharmacology so I should rememebr- PLUS I know from personal experience 17 years ago.
****Paranoia*****- tremors- delusional thinking- disordered thinking- there are effects that last a LONG LONG time- it is the longest withdrawal time of ANY addictive drug if I remember right- and that has to do with disordered thinking- There is an acute withdrawal period but there are effects that last along, long time iwth benzos-
With me, I was medically detoxed from benzodiazepines and alcohol with valium in a hospital setting 17+ years ago. They did it inpatient with valium because I had DTs but also because of the benzos. They monitored me very carefully-
I am very sorry to read of the quality of care you have been getting- it is not appropriate NOR NICE!!!
I always mention when I am getting shoddy medical care all the lawyers in my family. I strongly advise that. Yes, it is obnoxious but sometimes only threat of litigation will inspire people to do the right thing.
Wish they did it from love of others, but the world is a harsh, busy place, sometimes.
Bea, I think you have it the hardest of any of us sometimes. I wish we had a Green Santa for YOU and your husband. You guys deserve a break. Hugs- Pats on the head!!! Bestest wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
The most amazing thing in this whole situation is that today after I publically embarassed Dr Y at the NYU support meeting (mentioned that coming to NY to see him had been the biggest disappointment we had had to date but did not mention med issue) -- the doc asked me to explain the phrase "cold turkey". This is a Columbia Presbyterian educated neurologist also board certified in psychiatry.
Anyway, after the meeting the Doc found me asleep in a chair in hubby's hospital room and had a discussion with me after he read the letter I had written this morning and asked to have included in hubby's medical records. I did mention possible litigation and listed 7 issues I felt needed to be addressed.
Doc says letter will not be included in medical records and I cannot speak to any of the specialists who examined hubby -- only him and the psychiatrist. Will find out Monday just exactly what my rights are from the patient care advocate.
The result is that hubby is being transferred to Columbia Presbyterian as a psych patient on Monday. This was my choice as to a local psych hospital. The doc did resume oral Ativan at a low dose once again at the hospital psychiatrists suggestion and hubby is sleeping now for the first time in 4 days.
Dr C in Missouri is going to call Brian Fallon and try to make sure hubby is evaluated by a lyme literate psychiatrist at Columbia.
I am amazed at how well hubby is holding up to all the stress. I remembered some of the accupressure points we had discovered when he first got sick 6 years ago and spent many hours last night just massaging and using trigger point techniques to calm the tremors and shaking for brief periods of time.
The reason I went to Dr Y was not for IV IgG specifically -- was looking for a lyme literate neuro who could help find some med to control muscle rigors symptom so hubby could continue with treatment of what we believe are active Bartonella, Lyme etc infections.
Still in shock that a simple visit to a neuro could turn into such a fiasco. Hubby was confused (didn't know my name, his name, where he was etc) and doc has finally admitted at least that he had encephalopathy.
Hubby had wanted me to try to arrange a transfer to Columbia earlier this week, but the Lyme Disease Treatment Center there does not evaluate patients and Brian Fallon does not see patients personally except as part of the neuropsych testing. Anyway, maybe Dr C can pave the way somehow.
Will post an update on Monday or Tuesday at the latest.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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tailz
Unregistered
posted
What if you don't have any lawyers in your family, and the docs can pretty much tell by your last name? Just something I happened to notice dealing with doctors and lawyers.
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My heart goes out to your husband. The withdrawal gets better, though. It takes me a week to make an adjustment (.5 mg at a time), but I assume your husband hasn't b een on it for years and years.
Very Sorry to hear it.
Katy
-------------------- "There is more in heaven and earth, Horatio, than is drempt of in your philosophy" - Shakespeare. Posts: 13 | From Dallas, Texas | Registered: Dec 2007
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Hubby had been on the Ativan for 3 1/2 years. His previous hospitalization -- 10/25 - 11/25 the doc increased the Ativan from 4 mg daily to 8 mg daily. When that was of no benefit in controlling muscle rigors, tremors and myoclonus she decreased the Ativan back down to 3 mg daily over a period of 4 weeks.
Hubby ended up on the same dose of Demerol and Phenergan as when he went in the hospital. These 2 were newer meds -- only since July of this year. Many other things were tried -- this was a small hospital with very little experience in dealing with Lyme patients.
So we came to New York to a supposed LLMD neurologist.
Transfer to Columbia is just not going to happen. Patiently waited 48 hours while they were "working on it". Got fed up and made some calls. Found out that a bed would not be available in the psych ward for at least another 48.
Moved on to another option. Two choices doc had given me were to tranfer hubby to a psych facility or take a discharge without any help with meds. Found an LLMD willing to see hubby tomorrow on an emergency basis. This LLMD also has hospital privileges if that becomes necessary. So I signed hubby out against medical advice when the admitting doc never made rounds and would not answer pages or his cell phone.
Dr Y may be sorry they drug their feet so long -- I put my time to good use the last couple of days. Haven't filed a formal complaint with the hospital yet but did get the ball rolling.
Was organizing my records and realized I had the doc's office notes where he put in writing that the plan was to decrease meds slowly.
Plus I located some 1 - 800 numbers that I will most likely pursue. Can't go into any more details except to say that I might have let the matter drop if the doc had not outright lied to us multiple times.
BJG,
When I agreed to the transfer the admitting doc let the psych doc put hubby back on Ativan at a lower dose -- 2 mg oral instead of the 3 mg he was previously getting IV. Hubby was able to sleep the last 3 nights so he has stabilized somewhat. As long as he stays in bed and doesn't move around very much the tremors are tolerable. Tremors and myoclonus are very much activated by movement right now.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Bea,
As I read all that your husband is going through, all I can think is.....How can this happen in the U.S.? I remember the days as a child, your doctor really cared about you and hey, even made house calls.
To put ANYONE through this kind of torture and get away with it, makes my blood boil.
I glad you have hubby somewhere else for now and hope you can get Dr. Fallon in on all this, since I think it would definitely have you and your hubby back in a positive path.
I just can't believe this could be happening. I'm SOOOOO sorry.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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valymemom
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posted
Give him just what he deserves, Bea. He does not realize who he is up against.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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tailz
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posted
First gentleman, Bill? lol Why does that thought amuse me so darn much?
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Glad he was able to sleep-!!! My old angel LLMD always said, "Sleep is essential to healing."
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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