Benzo victim with no GP. De-registrations are common for those suffering benzo side effects.

What getting a new GP involves.

Standing up from bed. I am physically very weak. My body has been through an ordeal for many years now. When I try and walk my strength comes and goes. When I try and walk the floor feels as though it’s falling away from me. The room feels as though it’s spinning.

I get exhausted trying to get dressed. There was a time when I was so cognitively confused by benzos that even having the mental energy to select the right clothes was impossible. That’s no longer a problem but the physical strain of the movements involved to get dressed is large. I stand up with help and walk to the car.

I no longer drive. My GP surgery is a moments walk but I cannot get there by foot. Someone drives me there. As we drive I experience sensory overload from moving in a car. Sounds are in any case a thousand times louder for me (noise sensitivity) and movements are too. So driving at 30 miles an hour feels like 3000 miles per hour. It’s harrowing. An inexplicable ordeal. I feel sick. I already have stomach problems. The weight of the seat belt feels like it’s boring into me. I get out of the car and walk with help into the surgery. I look totally normal but feel anything but. I have gained four stone. I do not look kempt.

Receptionist doesn’t know of course. How could they. Told to wait.

I look around the room. I have an extremely weak immune system. I cannot afford to come down with yet another infection. I know this. I’ve read up about gaba receptor down regulation. I’m educated. My doctor is not. I see people around me coughing and spluttering. I cannot get another infection. It’s more than I could take. One person is eating a sandwich. It’s a long time since I had one of those. I am now allergic to gluten. My former friends think it’s a fad.

The cheeswire sensation around my head tightens. I am in huge amounts of pain. But I look fine. I am not. There are no tests for benzo related gaba receptor downregulation. There is no option of pain relief. My body will not respond to pain medication. Even some antibiotics would kill me (flouroquinilones). Between seventy percent and one hundred percent of the gaba receptors in my brain and central nervous system are malfunctioning due to coming off the benzos. I know this. I understand this. My doctor does not.

I hobble to the bathroom and throw up. My heart is racing. This is not anxiety. The noise of the buzzer to tell me the GP is ready actually hurts me.

I sit in front of the GP. I explain my situation. I am shaking due to the symptoms. The GP doesn’t believe i’m in pain. She thinks I’m “anxious”. The GP doesn’t believe benzos can do this. She offers to refer me for CMHT “support”. The GP cites a “history of depression”. I state more tablets or antidepressants is not suitable. I do not metabolise these medications as I should. All the CMHT will do is dispense medications. They aren’t taught about benzo syndrome any more than GPs. I know this. I understand. I’ve lived it. That’s why I’m ill now.

I’ve understood the science of what’s happening to me a long time ago. My doctor will not even look at the documents I have with me. Not even the email from the benzodiazepine helpline in Bradford. I explain about benzo withdrawal syndrome. Now the GP thinks I’ve got an addictive personality. That this is my fault. She wants to refer me to an addiction centre. I know this is appalling advice. I’ve dealt with the case histories of those rendered brain damaged by detoxes and over rapid tapers, spoken to the press about it, seen the documentaries, been involved in those media articles. The GP becomes defensive. She says all I’m saying is absurd and that she has “lots of people on benzodiazepines”. She seems both proud and defiant about this fact.

I ask her to check out the work of the APPG in Parliament. This situation is real. The penny drops in her head that I’m telling the truth. She becomes aggressive, in the passive way only GPs can, asking if I intend to sue. I am shaking. I am ill. She won’t listen. I am in pain. I need to avoid stress. Stress ramps up the symptoms. She looks at my notes. All reams and reams of misdiagnosis based on not understanding I’d been in toxicity to benzos since 2002. That a family member had been impacted by toxicity aswell. Almost every single thing written about me is incorrect. She barks at me “well, so what…? You’ve had a bit of a bad time coming off benzos?!”

She seems very annoyed that I am informing her of an iatrogenic illness. She doesn’t understand the word iatrogenic. I have to explain it.

She tells me to weigh. She’s looking for any alternative explanation rather than benzodiazepine damage. She states I’m overweight and that this is causing the pain my knees and all my other symptoms. She thinks I’m depressed and anxious. I am not depressed. I’m withdrawing from a drug fifty times stronger than heroin by myself with no support. I have been living with this every single day for years.  I am strong. I am winning.

The latter happened to me when I was in withdrawal. In the end I had to sell my house and move to a flat because my mobility deteriorated. I sold my house for a reduced price because the situation was urgent since my carer couldn’t cope. I was sent a letter from that very GP surgery deregistering me from the practice because I have moved out of the area.

My second to last GP had increased my dose of diazepam to 100 mg a day just after the previous GP to that had deregistered and thus CT’d me.

Back then in June 2013 I was deregistered from the family practice I’d always known for being too “time consuming” and “complex” for the practice. I was given no warning. It very nearly resulted in a cold turkey which would have killed me. It is true to say my behaviour back then had changed. I was disinhibited due to the benzos. I was chronically suicidal.

I was always in very severe and very real need but they deemed me too “needy” and “dependent on others”. The notes written about me still adversely affect my healthcare to this day. I had been suffering benzo syndrome caused by the very pills they were prescribing. So had a member of my family. We did not know. We trusted our doctors. We never imagined prescribed medicine could do so much harm. There are resources online explaining that benzo toxicity causes a “total inability to function in any way. A person affected by benzo toxicity cannot manage even the simplest tasks by themselves”. I wish I had seen those resources back then.

I am off the benzos now. I am no longer suicidal, disinhibited or emotionally labile. I barely even have PTSD anymore, let alone a complex form of it. It was the benzos causing all that and I’ve beaten them.

But I am very disabled. I am in the acute phase. It’s the worst it’s ever been. And I am not believed.

I am at home. I wonder if my thyroid has gone down during the withdrawal process (this happens to many) or if I’m anaemic. I paid £199 for a self test kit I can do from home. I’m online to thousands of people in the same predicament as me. All without appropriate healthcare for a situation not of their own making. Many have also been deregistered. They are desperate.

I have now been without a GP since July 2016. It is safer this way. It really shouldn’t be…

Postscript.

If I lived in the Oldham (Lancashire) or Camden (London) I’d have had the support of benzodiazepine specialist centres who not only would have supported me but liaised with my GP so I would have been believed. This is a postcode lottery that few can win.

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One thought on “Benzo victim with no GP. De-registrations are common for those suffering benzo side effects.

  1. Claire. You are one of the bravest and compassionate people that I have ever met and certainly do not deserve to be going through this harrowing ordeal without adequate medical and nursing support. Your suffering and the many others that I have witnessed over the last 30+ years, drives me to bring awareness and dedicated withdrawal centres for prescribed drug dependency throughout the UK. Yes, we are fortunate here in Oldham with just one of a mere handful of dedicated services but this should be the norm and not the exception. Your own personal bravery is an example to all of us in the benzo community and Sue and myself, send you our love and best wishes for the future. Barry and Sue. xx

    Liked by 1 person

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