# This is really a long shot ref. benzodiazepines



## maggielou (Mar 25, 2008)

As heading, this is a really long shot but just wondered if anyone on here has had any experience of benzodiazepines or their withdrawal.

I realise this subject can be very personal so please fel free to PM if you wish.

Thanks


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## Sonesta (May 10, 2005)

Hi Maggielou,

Take a look at this website and see if this helps? www.benzo.org.uk/manual/index.htm Maybe a visit to a GP might be adviseable for the person in question as withdrawing from any long term medication or addictive drug can be a very difficult process and the person's GP is the best person to advise them.

All the best.

Sue


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## Pusser (May 9, 2005)

I used to take valium in my late 20's. I had a private doctor in those days and she would subscribe anything I wanted. And that's what I wanted. I only took them in lumps, sometimes many days or weeks between and then I would hit them when I had an anxiety attack. I now know of course that I have a genetic problem re flight and fight responses and being aware of the issues, I just don't need drugs anymore as I am not frightened knowing what it is.

Many people have withdrawal symptoms but those that take it regularly are suffering from a relatively untroubled world and reverting into the real world and that is their issue more than the drug itself. And in many ways, alchoholism is similar albeit I have spelt it in an odd way.  

All these drugs really do is stop your mind dwelling on any subject for long and these include of course problems and so issues do not seem so great because they do not build up.

So in my view, if you come off these pills and your problems have previously been resolved then it should not be too difficult to slowly cut down the dose. If you have the same problems as when you started then of course these problems will be bigger and of course, almost impossible to come off pills.

Please note this is personal experience and personal views and certainly not what medical people say whom rarely have taken it themselves of course.


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## 107088 (Sep 18, 2007)

Whatever else you.....actually I'll rephrase that....


whatever the patient does, theres 2 things that are absolutely vitally important.

(i) DO NOT STOP THE MEDICATION IF PRESCRIBED BY A MEDICAL PRACITIONER> and I make no apology for shouting.

(ii) Go to see the G.P. Explain the reasons why the patient wishes to stop taking the medication and then take advice on ; how to stop, the timescale, the associated withdrawl symptoms and if theres other pharmaceuticals that can help with them, and is the underlying condition still present and if theres alternative medication for the problem.


NOBODY whos not have appropriate medical qualification whould offer any other advice than this. Stopping medical treatment improperly can be hazardous to life. and I mean life.

Adrian

SRP, EMCP, Bsc ( cardiology.) this is to prove I have some expertiise to entitle me to suggest as above. However, once more, nobody should cease medical treatment prescribed by a Doctor unless it is advised be another one.


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## maggielou (Mar 25, 2008)

Thank you all for your contribution. The situation is a little different than you think.

My sister had been on 2mg of clonazepam for 20 years plus. She is 69 years old. Last June she was ill (anixety & depression)and visited her GP who advised her to double up on the clonazepam. (4mg per day) She took his advise.

In september she became very ill and was admitted to hospital. During her stay the doctor decided to take her of clonazepam. In her inexperience the doctor took her off too quickly. She reduced the clonazepam from 4mg per day to zero within 7 weeks. Although she was very symptomatic the reductions continued, the last being on 29.10. and she was discharged on 5/11. On 7/11 she suffered seizures and was re-admitted to hospital. Immediately following the seizures the doctor concerned transferred her to another hospital.
The symptoms got worse and several times my sister tried to commit suicide. Unfortunately neither my sister nor I knew what was happening to her. She had never been informed that she might suffer from extreme withdrawal symptoms nor was she told that the withdrawal had been too fast. She was diagnosed with personality disorder and gereralised anxiety. Withdrawal symptoms were never mentioned or discussed. She received no treatment or medication. The symptoms continued.
Eventually in Feb. 2008 I discovered benzo. .org and Professor Ashton.
When we submitted this information to the doctor Iris was discharged the same day. I then with much time effort and many phone calls eventually got her re-admitted on 10/3 and given 30mg diazepam per day.
However the symptoms do not appear to be getting any better and I just wondered if anyone would know if the overfast withdrawal could have caused permanent damage to her central nervous system.

Also wondered if anyone had gone through withdrawal and experienced severe symptoms like this. and still made a good recovery.
Its been 10 months now.

Again thank you all for your contributuons.


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## Sonesta (May 10, 2005)

Maggielou how absolutely terrible for both you and your poor sister it must be a living nightmare for her and my heart goes out to you both. 

I am not qualified in any way whatsoever to advise you and my only experience of being close to someone withdrawing from any kind of addiction is another matter entirely and not at all connected with your experiences but I do know it was a very anxious, frightening and difficult process and medication was needed to help the person get through it. However, this person is absolutely fine now and has made a full recovery and I am thrilled to report they are leading a happy and drug free life! So there is light at the end of the tunnel - it was a long journey but most people get there in the end! 

Like Bandaid has advised you, your sister will require a qualified and sympathetic doctor's help and proper medical guidance through this as it would appear from what Bandaid says, that it can be very dangerous to suddenly stop and therefore you must insist that someone medically qualified sits up and takes notice.

It sounds like your sister has not recieved the proper support through this and that is absolutely appalling and there is no way she should have been abadoned to cope with all of this alone. Thank goodness she has you by her side and I really hope you get some answers and some professional help soon.

All the best.

Sue


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## maggielou (Mar 25, 2008)

Hi Sue,

Thanks so very much for your reply. At least you have some understanding of whats its like. Don't really know why they took my sister off clonazepam completely. After 20 years+ and at 69 yeras old was it really necessary??

The biggest problem has been that the doctors have all just dismissed her when she has tried to explain how she feels. 
Even now they will not admit she is suffering from withdrawal symptoms.
We asked for second opinions etc. but they just laughted at us.

Eventually I wrote a letter of complaint. The complaint was upheld but nothing in my sister's treatment has changed.

Still if your friend can get through serious withdrawal symptoms and go on to live a normal life, perhaps with a little more time my sister will too.

Thanks so much for your support.


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## cronkle (May 1, 2005)

Hello there,

It's good to see that you have been given a lot of sound advice by the other posters. It just shows that it is worth asking this community anything!!

I would like to offer you encouragement as well as I know a number of people who have been in the same position as your sister and they have gone on to make full recoveries. It did take time but the perseverance was certainly worth it.

Good luck


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## maggielou (Mar 25, 2008)

Thank you Cronkel,

Thats the best news I have heard in a long time.

brilliant. much happier now.

Thanks


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## 107088 (Sep 18, 2007)

maggie, 

The problem with pharmaceuticals that are given out is that they are basically an alien chemical. What I mean is even if the chemical mimicks a substance already natural within the body, like...er...dopamine, adranalin, ( epinephrin if you speak in new money) or even the endorphins, despite the tests and trials that they go thru, ( having said that, looking at the latest information about Prozac, f'instance, ), they are different to the naturally produced stuff.

I had a chat with a pharmacist, who declined, reasonably, to make official comment, as t'wer, and the consensus is that in reality, like many patients, it was of little ppoint to have removed your sister from the drug in the first place. I make no official on the record comment regarding this either, I should point out. The general rule is, that the length of time an addiction is present, the longer the recovery period will be. Which isnt going to cheer you up any. The drug your sister is /was on, is very seldom prescribed nowadys, for the same reason as librium/valium isnt used alot nowadays. 

I would suggest, once more, that if your sisters G.P. was happy to continue your sisters prescription, it may be of value to visit him with your sister and, explaining the results of the withdrawl from the drug, request it to be represcribed..Without wishing to be rude, your sister is 70 -ish, and theres no point in her coming off it.

However, once more, I cant, honestly offer better, or more precise suggestions than these. Your sister is an individual, and therefore, any further treatment will and must, be sorted for her in particular.

this is offered as anecdotal, conversational suggestion, not as advice which is professionally given.


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## adbe (May 1, 2005)

I agree with Bandaid, I am a community nurse and we have a number of patients who remain on them because in their 70's an 80's it is a safer/least harmful thing to do. They are certainly not as expensive as many modern alternatives


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## Invicta (Feb 9, 2006)

Joining an appropriate support group may help. I ran one for PMS sufferers for many years together with answering a national helpline for sufferers, their partners and families. Just talking to people who have had the condition themselves or have been professionally involved with sufferers, can be of enormous benefit. 

Only last week a friend who had been undertaking occupational health checks for employees of a local authority had a lady who had hugh problems in her employment come to her. On questioning her my friend found that the lady had suffered depression and a feeling of worthlessness for over 14 years. My friend suggested to the lady that she should speak with me as there was a possibility that there could be a case of discrimination against her by her managers. This lady quite foolishly in my opinion did not belong to any union. (Before my accident I was a steward for a large union hence my friend suggesting that she should talk with me). 

This lady did ring and for an hour poured her heart out to me over the phone. At the end she told me that the conversation she had had with both my friend and I was the first time she had ever spoken about her situation and doing so had certainly made her feel better. She had 'bottled up' her feelings all those years. My friend did suggest that the lady went to see her GP to discuss the possibility that a course of anti-depressants might be helpful in the situation. 

The problem with taking anti-depressants and tranquillisers in my experience, is the lack in many cases of monitoring the effects of the medication. Doctors are all too ready to prescribe but then do not follow up the effects of the treatment. I have known people left on anti- depressants and tranquillizers for years instead of them being used for a short period to help over an acute mental illness. One is not left on antibiotics for years and years when used for a physical illness so why treat mental illnesses any differently?

One thing that everyone can do and I advised this lady to do exactly this is to eat regularly to prevent hypoglycaemia (I suggest looking up the effects of this on a search engine). Exercise too is very beneficial as this can release endorphines (the feel good factor). Exercise is something that people can actually get hooked on because of the feel good factor produced by the endorphines. (Just waiting for a comment from Pusser on this one!) 

My Paramedic son-in-law suffers from migraines. These are far worse when he has been on duty for hours without the opportunity to eat regular meals. Headaches are one of the symptoms of hypoglycaemia that can result from irregular eating.

It never surprised me when I spoke with PMS sufferers who told me that they felt particularly off colour in the mornings to find that they had eaten no breakfast. Breakfast is the most important meal of the day for anyone, it is doing what its name implies BREAKING FAST. This lady who rang told me that she felt far worse in the mornings. On questioning her I found that she never ate breakfast. 

I know myself how I felt after 12 hours on night duty as a midwife, sometimes not even getting a cup of tea till 4 am, due babies making their appearances at night. The cause of so many nightime appearances I am convinced is the fact that most babies would have been conceived in the wee small hours!


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## maggielou (Mar 25, 2008)

Hi Invicta, Sue, Bandaid and all who took the time to reply and offer advice. Sorry for the delay in responding. Sometimes I just need a break from it. Wrote another two letters to the hospital this week.

Invicta, Yes councilling/talking therapy would be very helpful, hence trying to get in touch with anyone who has been through it. Its important to note that since none of the doctors will admit that my sister is suffering from withdrawal symptoms, not only will they not discuss them with her, but they actively discourage her from mentioning them.

Professor Ashton (www.benzodiazepam.org) is willing to put her vast experience freely at their disposal but they won't even consider liasing with her. Apparently its not ethical for another doctor to comment on a patient whom they have not examined regardless of their experience.

During one of the worst periods from November till the end of Feb. her consulant's attitude was disparaging and dismissive in her determination to avoid discussing my sister's true condition. At this time just an understanding and listening ear would have been of great benefit.

Bandaid. you would not believe the way my sister has been treated.
In her medical records the words, symptoms, seizures, and Benzodiazepam do not appear. Apparently she does not have symptoms, just "low moods" Anyway last week my sister's consulant, on learning that my complaints had been upheld, said she would arrange for her to see another consulant who was experienced in drug/alcohol abuse/withdrawal.
This gave my sister some hope. Today she has been informed that the new consultant will not even consider putting her back on clonazepam and is likely to increase the current withdrawal protocol. My sister is devastated and suicidal. How can this consultant make up his mind before even seeing the patient.

Bandaid. I have written to the medical director and the Chief. exc. Could you tell me please who would be above these in the hospital hierarchy.

Thanks.


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## Invicta (Feb 9, 2006)

To make a complaint about treatment in the NHS, the first line of approach is to contact PALS (Patient Advice and Liason Service). All NHS Trusts have one and to make contact either phone the hospital in question's switchboard and ask for PALS or find the number in the local telephone directory. 

I have recently contacted my local PALS as there had been a problem with a date I understood I had for hand surgery. I had chosen to wait for 6 months until my daughter was on her long school holiday and able to help me only to find that my name had only been on a 'holding' list as opposed to a waiting list, whatever the difference is. 

I contacted PALS with the result that I have now been given a date in August to have the op. This is to take place in the private unit of one of my local hospitals, paid for by the NHS. The fact that the hospital Trust is applying for Foundation status and I have waited longer than the 18 week target may be behind this I feel! (I do have private medical insurance but with this could not have the the local surgeon I wanted hence my having the op on the NHS). This government has chosen to put great emphasis on 'Patient Choice', it is up to patients to use it! 

Returning to Maggielou's situation, can I suggest that her sister tries to make contact with a CPN (Community Psychiactric Nurse)if she has not already got one or failing that, with a social worker working in a local mental health team. People in the situation in which Maggielou's sister finds herself very often need to have another professional to 'intervene' between patient and doctor. I did this as a health visitor and as a person running a support group. The practice nurse at her GP's surgery may be another person to turn to for help and support. 

Failing these approaches, can her sister go to stay with someone out of her local area to enable her to see another doctor as a 'temporary resident'?


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## maggielou (Mar 25, 2008)

Invicta

Thanks for your suggestions. Pals have been brilliant in their help and support. CPN not good. have a glass of hot milk was his best suggestion.

But this is an excellent idea:

Failing these approaches, can her sister go to stay with someone out of her local area to enable her to see another doctor as a 'temporary resident'I will investigate.

Thanks again to all


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## marionandrob (May 14, 2005)

Maggielou
do you know why your sister was prescribed Clonazepam origonally?
Years ago when I first qualified (Pharmacist) it was used for the treatment of epilepsy as an alternative to either phenytoin or carbamazepine.
If you visit your local library you should find a copy of the British National Formulary (BNF) in the reference section.
Look up Benzodiazepine withdrawal in the index, you will find that the entry lists the symptoms and also gives a recommended withdrawal protocol with an alternative for patients that experience difficulties.
As The BNF is published jointly by the British Medical Association and the Royal Pharmaceutical Society you may find being able to quote from it helpful in dealing with Doctors/Consultants!

All my other ideas seem to have been covered by previous postings but you may be able to get some help under the new Mental Capacity act.
As I understand it , if your sister suffers from fluctuating or reduced capability to understand her treatment as a result of her symptoms 
( especially if her doctors are trying to suggest she has a personality disorder) she may be entitled to the services of an independant mental capacity advocate.
Hope your sister is feeling a little better and that some of the above may prove useful


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## 107088 (Sep 18, 2007)

Excellent post. More beneficial than my ramblings.


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## maggielou (Mar 25, 2008)

Thank you both. All help and advice still gratefully received, but as I think it is possibly innappropriate to continue in the open forums perhaps you could send a PM.

Marion I have responed to your post by PM however I will say in response to your question. Why prescribed originally.

In the mid 70's/early 80's people were prescribed barbituates for anxiety/stress and mild/medium mental illness.

These were addictive and fatal in overdose. Then along came valium (diazepam) the wonder drug. Non addictive (or so they thought) non fatal in overdose, and worked much better than barbituates.

In the USA they were reffered to as the "bored housewife's" dream and prescribed like sweeties.

Valium led to the development of the "z" drugs = benzpdiazepams. which doctors at that time prescribed freely over long periods of time.

My sister was going through an acrimonous divorce in 1977. She has always had problems sleeping and over the next 7 years was prescribed various "z" drugs at various intervals in her life.

by 1985 she was taking cloazepam pretty well daily and continued to do so till 2005.

By the early 90's investigation was starting into the effects and addictive qualities of these drugs. They don't just affect the mind they actually alter brain function.

various recommendations and attempts to discourage GP's from prescribing were implemented and largly ignored. Around 2001 the discontinuation of these drugs started to become a real issue and some doctors began to refuse to prescribe them, or issue repeat prescriptions.

Unfortunately most doctors had no real concept of withdrawal methods or the agonising and protracted symptoms experienced for months or years after stopping "z" drugs.

Off my soapbox now.

Marion as you can see from the above she sort of moved into it gradually with little or no consideration and as she never had trouble getting them prescribed she just continued. Doctors with no experience of benzo withdrawl just look at the directives discouraging them from prescribing

*Every *post has made a positive contribution, so thank you all.


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