Recovery Blog 5 - May 2015 Onwards

28. Sep, 2015

 

You will know me and my beliefs in all this by now, "Me take a supplement or drug, never". The truth is never say never. There may come a time during the withdrawal process when a drug becomes necessary to combat an infection or like me, high blood pressure. Withdrawal puts our bodies into a highly compromised mode which may reduce our resistance or trigger something else within our systems. The main point is to act sensibly, talk to your doctor and choose the right drug and in the right dose for a highly sensitive body. Always thoroughly research a prescribed drug first.

This has all been brought on for me by an escalation in the intensity of my symptoms as the wave has careered onwards wreaking havoc within my body and nights of adrenaline surges that brought me back to memories of acute. It got so bad that I was driven to calling in my doctor. He found a shivering, quaking wreck fuelled by adrenaline and fear. There's no doubt that my Blood Pressure would be high when in this state.

He examined me and my heart was beating ok but my BP was up so that dreaded word 'stroke' was mentioned. More than anything I want to live and get through all this and certainly don't want anything to prevent my doing so. Life is too precious and however ill I've felt I've tried to always hang on to that shining light at the end of the long dark tunnel. A stroke could possible extinguish that light once and for all. I was willing to do something to prevent this happening.

I've always held a fear of having to be prescribed an antibiotic or any other drug while suffering like this. I am supersensitive to everything so the very mention of drugs can turn my stomach over. My doctor went away to research the best medicine for me. He needed something that didn't cross the blood/brain barrier and so hype up the central nervous system further. He prescribed something in a low dose which I've been taking a quarter of for the last four days. I'm ok, not perfect but I no longer have high BP and the adrenaline rushes have gone. I feel happier and more positive and am now able to sleep again. This is a tiny dose that is unlikely to have any effect on normal people. For me, as a highly sensitive person with everything in hyper drive, it not only reduced the BP but calmed me somewhat. I liken it to homeopathy where infinitesimal amounts of a substance aid healing.

I've learnt from this experience and now throw out the assumption that all drugs are bad. It's difficult not to assume this when it's a drug that has damaged us and altered our lives for so long. I have to be realistic and if something really is necessary I will research it to the full. Then, when I'm happy I'll take the tiniest dose possible and gradually increase this as necessary. That way I'll hopefully avoid any major reaction. Taking a drug will not set back withdrawal and if there is a bad reaction a drug can be changed as necessary. I'm carefully monitored by my prescribing physician for negative effects. 

Always remember we're all very different and react in different ways and this is my experience after being afraid of taking drugs and supplements due to negative reactions. I would love to hear the experiences of others on this subject.

 

I'm back on track and enjoying the very late UK summer which has finally arrived!

 

 

 

 

17. Sep, 2015

 

I've been a bit quiet recently, a combination of waves and tendonitis in my wrists limiting the amount of writing I can do.

My husband has just left for the conference in London tomorrow. The links for the live streaming of this event can be found on www.CEPuk.org It should prove interesting and links will continue to be available after the conference.

I'm feeling wistful. I'm a long way away from the drugs but symptoms have been quite intense over the last six weeks. I have had breaks occasionally but they quickly morph into anxiety, tension and insomnia. On a more positive note most physical problems have eased off. I'm not worried, this period will pass and can only be further readjustment of a nervous system shredded by benzodiazepines over many years. There's a lot of repairing going on and I must continue to be patient. I have a supportive husband who never gives up on me and I realise just how lucky I am to have him. I hear many stories from people whose families have lost hope. This is so sad when there's much supportive literature on the net to 'educate' those unable to appreciate the brain damage that happens over long term use of benzos (longer than the two to four weeks) and the time it may take for us to repair. Later I hope to include, on another page, Peter Hayes-Davies' excellent guide for carers which can be shared with families and friends.

I continue to seek answers for all this but the truth is that nobody knows. There's been little research and little acknowledgement of the crisis. I still find it hard that there can be so much suffering with no recognition and no support by the medical profession. I know there's nothing been found to help and we should always steer clear of supplements and other drugs but it goes against all that we've learned in our lifetime; the correct drug can cure whatever ails us. Now we find that a drug we took to help a problem can actually cause serious illness that lasts months or years after it's discontinued. How can we ever trust anything again? I hope I feel less negative about the medical ignorance once recovered. For the moment I need to get back on track and find that flickering light at the end of this long, dark tunnel. I will shine again eventually as we all will.

 

 

8. Sep, 2015

Over 33 months of suffering now and three weeks of my window blowing in the wind not sure whether to stay open or slam shut! It seems to have settled on open for the moment. 

 On television I see the crisis of the Syrian refugees and my heart goes out to them. How minuscule our problems seem in comparison to theirs. Yet there are similarities. They seek a life free from oppression and we seek a life free from prescription medication. Benzos have caused our oppression and trying to escape this is our crisis, two situations so diverse yet both caused by the actions of other human beings. 

 In our case the other human beings are unfortunately the doctors who should do no harm. With recovery I find my emotions and my determination to make this suffering count for something burns deeply inside me. I can sit back and do nothing or I can do my best to get my own crisis heard. I believe we have to start the attack at the grass roots where the problem is caused. 

I have a letter from my General Practitioner written in answer to my husband who complained of my treatment. I've replied to each of his observations with the truth of the situation. It shows the lengths the medical profession will go to prove we are anxiety filled individuals with a ‘mental illness’. They often try hard to cover their own inadequacies and who can blame them as Benzodiazepine side effects and withdrawal goes against everything they’ve learnt in medical school. The Medical dictionary of prescription drugs is their Bible and listening to the patient doesn’t have its place in their brief consultations. There is a drug for everything and a label for every illness which their patients can then be burdened with for the rest of their lives. Find a drug to ‘cure’ their label and close the door. I don't dislike my GP, he does his best and is only reflecting the usual beliefs that our doctors have ingrained in them but, ‘admit to their own mistakes and lack of knowledge, never’!

Briefly some points I picked up on. It may help in 'educating' your own doctors.

1. In the UK prescription medication should be reviewed every six months with the patient. The prescribing doctor should be fully aware of the side effects of the drug and of its interaction with other drugs and inform the patient of these at each review.

2. The doctor must listen to the patient and support them if side effects do occur. He can only do this by full knowledge of every drug he prescribes. He should never prescribe a further drug to overcome the side effects of the first drug without research and discussion with his patient.

3. He should maintain a clear and accurate record of a patient’s visits and the outcome of each visit. If the patient is seen by another doctor in the practice then that doctor must pass on a full record of the visit to the patient’s regular GP.
 
4. If a patient is referred then a full discussion regarding the observations and treatment advised by the outside specialist must take place afterwards by the GP with his patient.
 
5. Patients should not have to carry ‘labels’ around with them for the rest of their lives. These labels often refer back to a medical problem suffered decades ago. This leads to mistakes being made when further diagnoses are required. `Once branded with anxiety or depression then, according to many doctors, you never recover. Further complaints that can’t be clearly diagnosed are due to that label even though made when you were a teenager and now 70 years old!This is laughable if it wasn’t so sad and so damaging.
 
6. Doctors must use the term ‘mental illness’ with extreme caution. There are, in reality, only a small minority of people who may suffer from true mental problems. The fact is that the labels they seek to apply to many of us are just that labels to cover their own inability to discuss a real problem such as bereavement, preferring to say it’s depression and so dish out a pill. 
 
7. Again on ‘mental illness’ there is growing concern that the labels applied to various so-called ‘illnesses’ are just that labels with no foundation and no objective proof. There is no blood test for a Generalised Anxiety Disorder, it was just a name conjured out of thin air by a group of old men sitting around a table. Doctors must not label patients with these subjective descriptions.
 
8. Where benzodiazepines are concerned they must be prescribed for no longer than two weeks.  There is no situation where the patient should be given these drugs for longer than this unless it’s life-threatening. Patients can become dependent even in this short time so even two weeks use must be observed carefully.
 
9. Patients must never be given benzos on an ‘as needed’ basis. This is dangerous and leads to kindling and a severe withdrawal syndrome. It takes just two tablets a month to cause dependence. (I will look up dosages for those two tablets).
 
10. Patients must be supported in a long, slow taper from Benzodiazepine drugs and in fact from any drug prescribed for any length of time. 

 

I’m going to have to stop there as I could go on and on! The problem is huge, too huge for my foggy brain really. I will write further about all this on a main page when I can. For now it’s a start.

 

 

28. Aug, 2015

This is a quick update and a thank you to those that have emailed recenty. I continue in this last wave but I'm ok and I am able to cope with the symptoms as they wreak their usual havoc. It seems I'm unable to handle any outside stress at present and I've had several stressors recently which caused this present, difficult and lasting wave.

Once through I will be more positive again but always remember you are not me. Everyone's journey is very different and there are many permutations of recovery and many permutations of symptoms. Keep on your own path and know, that beyond doubt, it will all end eventually. Read positive messages and watch positive videos and please don't absorb the horror stories. Always look on a wave as healing as it nearly always brings us to a better place. Waves are the body and brain reorganising and finding a new homeostasis. Never forget 'Everyone Recovers from Benzodiazepine withdrawal'.

 

 

15. Aug, 2015

 Oh dear I've hit another wave. One week away from 33 months off. I had started living my life again slowly and carefully. It seems too many stresses have built up from minor things and now I'm back in bed with a room spinning around me and a brain clouded in thick fog. It's been building for a few days and the wave finally broke in the middle of last night sending me back into pacing mode and tossing and turning in an icy cold bed when I was able to lie down. It's August but I had to put my electric blanket back on my bed and turn it up to full. Summer has missed the UK this year.

Oh dear, I hate to moan and be negative but perhaps it's a warning not to count my chickens too soon. It will surely pass and may even bring me to a better place than before. I must slow down and have a rest from writing my book for awhile. I have been trying to concentrate on this but it's likely that the effort to focus my fragile brain has just resulted in it crashing again. Also using the computer a lot and staring at a screen doesn't help.

Another lesson learnt and another wave to add to the experience. This one is now in its seventh day so it's not giving in too easily. I'm aware it happens but I have tended to bury thoughts on just how bad everything can get and how to cope when it does. All my affirmations had to be reawakened alongside the deep breathing and positive thinking...'This too will pass'. It's so easy to forget when things have been better but who wants to remember their withdrawal waves anyway? These are best drowned in the mists of time although the lessons they teach us must never be forgotten and used to inform the rest of our lives.

Here I am for the moment, in bed, holding on and needing sleep and meditation to rest my racing brain. I remain positive that it's just a minor blip on my withdrawal journey.