I am a bundle of symptoms. Nothing more. Benzodiazepine associated brain injury and CNS damage.

All I am is a collection of symptoms. As I write this my teeth continue to cut and bore into my tongue and cheeks. A mouth full of blood is something I’ve grown used to. I feel tightness around my head like a cheesewire about to slice my brain into two like it were a piece of Edam. I’m coughing all the time. When I walk the ground feels like a trampoline, soft and flexible but also soft as though the trampoline were covered in sand. The room feels as though it were spinning. Noise is magnified by a thousand, so is movement, so is smell, so is light, so is touch. My chemical sensitivities are raging. My hall was painted two days ago. I thought, despite knowing paint fumes can make symptoms worse, that I could open a window and it would be ok. I was wrong. Each inhalation of air smarts with pain. My throat, nose and ears are all red raw. Burning like they are on fire. I stumble to go outside for air, holding on to furniture as I go for balance. But it’s cold outside and each freezing breath hurts.

I am puffy in the face. Apart from the swelling, I have gained four stone since I started tapering the benzodiazepines. The irony is that being fat is usually linked to a lack of self control. I’ve steadfastly avoided all the food and drinks known to make symptoms worse. Caffeine, MSG, gluten, sugar, the list goes on. If I make a mistake and ingest the wrong foods I’d pay for it in severe symptoms for days. Yet with eating being my only source of comfort during this horror show I’ve progressively got fatter and it’s still happening. My life is moving from bed to sofa and back to bed. I cannot go out. How could I in this state. With my senses being assaulted to this level, a small trip out no matter how small or brief would be, at best, an ordeal. I would not have believed these phenomena to be possible had I not experienced them myself. My body has become my own personal torture chamber.

I do not know how much longer I will have to live through this. There is no way of knowing. I’m told it will improve gradually but there is no way to know. I used to make plans just in case I got better. I was an optimist at the start but I have long since realised that life is to be led not just day by day, but minute by minute. A week seems like a blink of an eye such is the long monotony of my routine. So I log onto Facebook for my only social contact. As I press ‘like’ on pretty images of the dancing groups I used to belong to my limbs jolt, electric shock sensations occur in my head arms and legs. My skin burns like it’s on fire and crawls and itches at the same time. I have tried to keep up up appearances on Facebook that I’m still me. But the truth is there is no space for such a luxury as a personality when all life has become is coping with symptoms. That’s all I have become. A cluster of symptoms and odd phenomena that are so horrifyingly bizarre they defy description. The experience I’m gong though is difficult for others to relate to. What people tend not to understand they reject.

During this process which I started over eighteen months ago there has been no let up. I have tried to convey what is happening to others but I was dumped from my former dance group due to non attendance. They thought I could have attended even a few rehearsals if I’d “just tried”. A former friend got angry with me that I would not host a dinner party. I did explain I am not even cognitively functional enough to make a cup of tea without errors. This is something they could not relate to so did not believe possible. And another seemed irritated that I was “still ill”. The fact is the way other human beings have hurtled away from this illness, anyone would think I had a disease as highly contagious as Ebola.

I know that my other friends online going through the same illness are experiencing the same isolation to varying degrees. Our lives are lived on Facebook and we are thankful it exists. Whilst these symptoms rage on there is plenty of thinking time. Looking back at how or lives were blighted by the medication we were prescribed by our doctors. Unable to move forward with our lives due to the disability, caught in this helpless limbo of symptoms, there is plenty of time to see how our lives would have been different if we had not been injured by benzodiazepines.

There was a time, before I had started my taper, when the benzodiazepines were affecting my mood so profoundly that I thought of very little other than suicide. And yet back then, although suffering from symptoms of ‘tolerance’ I had my figure, I could walk, I was bubbly. I have far far more to be depressed about since that time. A cauliflower leads a life more interesting than me! As the amount of benzodiazepines in my system slowly decreased I saw symptoms I thought were intrinsically part of me disappear. The night terrors have stopped, the constant suicidality has gone, the depression lifted. I was getting clear windows of the real me…coming back again. And these results spurred me on during the taper. It felt worth it.

But now in this acute stage there is a cruel irony. Having seen the negative effects of the benzodiazepine medication diminish and even vanish my body and mind are now besieged with the symptoms of discontinuation. Brain injury and central nervous system damage have replaced the symptoms of tolerance to benzodiazepines. I try not to despair, I try to believe that things will get better as I’m told they slowly will, but this is an invisible ordeal. It is isolating, it in incommunicable, it is unspeakable, confounding, ever changing in intensity and seemingly never ending. It is like no other illness or disability commonly known. We struggle to believe it ourselves at times. How could our governments and doctors have allowed the pharmaceutical industry to do this to us? It defies belief that this could be happening but it is. We are an inconvenient truth, suffering to such a degree it seems difficult to understand how governments could have allowed the pharmaceutical industry to continue in this way. All some of us want now is stop this happening to others. That’s the only meaning some of us have left in our lives. So where help and support can be given even if just for our campaign, we’d appreciate it very much, if not for us but for future generations.

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21 thoughts on “I am a bundle of symptoms. Nothing more. Benzodiazepine associated brain injury and CNS damage.

  1. Claire. Superbly written. No one who has not experienced the horrors of this chemical invasion of mind and body, can truly appreciate the severity of the drug induced symptoms we suffer. We have been raped, body, mind and soul. God Bless You. Barry. x

    Liked by 1 person

  2. My girlfriend suffers from all the above verbatim! I on the outside just can’t understand what you all go through. Thank you for sharing your experiences and insights, it helps a laymen like myself understand a bit more. I wish there was something…. ANYTHING I could do to help her….
    My heart goes out to all of you who are afflicted with this, or care for someone who is!!

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  3. I too suffered as you are. I would lay in bed for days with a cool washcloth over my face. Every noise, motion, everything was amplified!! I just want to tell you, one day at a time. You will, as I did break through to the other side. Your brain will calm down as it heals. It’s an experience I wish on no one. Peace

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  4. Yes. Benzo withdraw syndrome. You are not alone by any means. If you can get through it, and it will last a long time, you will eventually experience the intensity of withdraw calming down, then, at some point, it will be gone. It is the long wait that does many of us in. Hang in there, friend. Went through benzo withdraw cold turkey 10 year ago. I did heal, but it took at least 2 years. Reinstated when my illness was overwhelming 3 years ago, now tapering off. What a fucking nightmare. Neither way is good, and I have experienced everything your going through. The first time, there was no internet, so I thought I was the only one. This time around, because of a few reputable sites, and people coming forward, I know it’s not just me.

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  5. This is SO WELL written. Some may read this and think “how can she be going through what she says she is when she can write like that?” Believe me – She IS! Let me tell you something – it is like we are trapped in our own little world, a world of suffering, a world of confusion, we may sound like we are ok, we may even appear that we are ok, but we are FAR from OK – we are suffering deeply on the inside.

    We are NOT over exaggerating or manufacturing symptoms – they are real. We may not express them in a way that suits others – and it hurts when others misinterpret because we lack expression.

    We only have a certain amount of energy and focus for each day which is a micro-fraction of what we used to have. We are not lazy or attempting to gain sympathy. This is just so misunderstood and totally unrecognized by the medical profession.

    We are stressed so very easily and I personally have a hell of a time keeping appointments as the symptoms / fatigue are just too severe some days and I was always the one who believed in being early for just about everything. No one understands that it is impossible to even be around people in this state of withdrawal and no one understand that it can last so Long. It hurts deeply when others don’t understand and they believe we are just being rude and anti-social. I feel for you and I do understand. I sincerely hope that others will awaken and at the very least attempt to understand — Hang in there Claire.

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  6. Claire i am so angry…i tht if i tapered really slowly….28 months it might be ok…..2 weeks ago the most horrific brain zaps and electrical tingling in all my extremities started..including the genitals…I ended up in A and E last Tuesday. BWS is staring them in the face but they would rather waste money testing you for electolude problems…they make you imagine MS…and when you say it is constant and there is no respite they look at you if you are Crazy….I actually have had 3 electric shocks seen by others…i feel as if i am a live wire….i Promise i will do my best to expose this ….You Fiona Pamela Barry all have kept me Sane this last year….I have my sons graduation Friday and am determined to be there….I want Justice not Pity……Refuse to be their VICTIM……

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  7. I have the symptom of emotional blunting. It’s so bad I can’t feel anything. This has destroyed my life. I have lost my husband, my house and I’m on long term disability. I now fear I will lose my job. I worked so hard for all of this and it has been ripped out from under me. I am now just a zombie because of these drugs. It is devasting and I’m scared I will never feel again. This all of course manifests itself in thoughts because I can’t feel anything. Someone please tell me this will heal.

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  8. Tara, I can only hope that it heals. I have the same emotional blunting. I’ve lost friends, family doesn’t get it, I’ve lost my job, home (living with my sister), and I’m one of the lucky ones that was approved for disability. WE WILL GET BETTER!

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  9. I am so sorry what you are going through. What we all have had to go through who have experienced the damaging effects of benzos and benzo withdrawal. I am in benzo withdrawal myself and many of the symptoms you said, I have experienced too. Most horrible symptoms for me are insomnia and fatigue that never seems to go away, because I can’t get enough sleep. When I can’t sleep, I go to overdrive, I feel like my body can’t handle the stress anymore this withdrawal and insomnia cause. And when the sleep deprivation gets worse,the symptom of head pressure, and constant suffering (like burning sensations) in my body get worse. Cognitive problems and emotional blunting are really scary. It is so difficult to accept what has happened to me.

    I have had to accept that I can’t function the way I did.

    I am lucky I have a husband who tries to understand. But I feel like I am alone with this never ending suffering. I am so tired seeing doctors who don’t understand.

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  10. My husband had to be reinstated on a slow schedule after a too fast withdrawal (3 weeks )in an NHS IPU. He finished the schedule 5 weeks ago and since then has had delusions eg about all the mattresses in the house heating up and feelings of overheating and icy coldness . All through this dependency (now 4 years ) the effect on us has been catastrophic with us being unable to attend family reunions or a dying brother and not being able to have our handicapped son home as we easily used to . We are very cut off and had to resort to local churches which we don`t attend for help. Phil`s symptoms are not understood by close relations -they think he has autonomy over his symptoms and advise exercise and can`t grasp the fact that although he realises that his ideas and delusions are absurd he can`t get round them and so for the last 5 weeks he has been sleeping on the floor . Like Claire he has sensitive teeth and eating generates toothache but unlike Claire he has lost a lot of weight and his muscles are flaccid . He is alarmed at his own appearance and thinks food is bad for his stomach. Visiting doctors have found nothing -he also thinks he has dementia and of course he hasn`t-his short term memory is excellent but he`s persuaded our poorly informed doctor to do a blood test. All the doctor was interested in at the last visit was to pressure Phil to have an anti-flu jab and he succeeded. What is needed in this acute phase and post withdrawal is regular monitoring and understanding help. Phil was also put on pregibilin by the demon doctor who caused this and this also poses a problem since Phil has symptoms like dry mouth and some others which can be attributed to pregabilinso he has to stay on this stuff for many more months before he can be weaned off.Margaret Phil`s wife of 52 years -we are both aged 74 and had looked forward to a good retirement -we no longer have our holiday cottage of over 30 years and a car . Phil has been housebound now for over 2 years

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  11. I know this is hell. But, trust me, it DOES get better. Over time, the damage DOES wear off. Just get as close as you can to TOTAL abstinence from this poison. In a few years, you might be able to really start living again, like I’ve done. Good luck, friend.

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  12. Excellent writing on a very difficult subject. As a fellow benzo user who has experienced many of these side effects (calling them symptoms tends to implicate the user and not the medication) I was wondering how many here have also taken fluoroquinolone antibiotics (Cipro, Levaquin, and other “floxins”) and felt its side-effects (CNS especially)?

    Some more info: https://floxiehope.com/2017/10/09/fluoroquinolone-toxicity-mimics-benzodiazepine-withdrawal-beware/

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    1. I was given a fluoroquinole antibiotic earlier this year after 2 bouts of less dangerous antibiotics did not correct a highly resistant infection I caught in a hospital. It is very dangerous, and I knew it, but the infection would of killed me. Fortunately, no serious long term effects. I was also given prednisone, that sent me into a cold turkey state, it nullifies any benzo one is on, creates massive anxiety, and inhibits sleep.

      I now have a steroid inhaler for asthma, it is not near is awful as the pills. Just a heads up.

      Every medication, vitamin, supplement and food has the potential to make us feel worse.

      We have to study and become our own experts.

      I am.sorry for your husband. He is in withdraw, all.the docs looking for some other cause are probably just wasting your time.

      The medical community is clueless about benzo withdraw syndrome and protracted withdraw.

      Benzo buddies has numerous forums on all these issues, from supplements, meds, and withdraw.

      They are a good resource for information.

      Also, I see a psychologist weekly for support, meditate daily using an ap I bought which is very good, exercise voraciously, and push myself to do things when I’m afraid.

      Best of luck to everyone here, myself included. This is for us, the worst experience of our lives.

      A few truths:
      1.Anxiety is a liar
      2. The CNS affects about 80% of your body, it’s going to strike where it will, and when it wants to. We have no power over this.
      3. Meditation, a supportive therapist, and tender self care will help one cope with withdraw. They won’t stop it, but learning to use our minds for something besides just experiencing agony is very doable.
      4. It does end. Not for a long time (I’m speaking as someone in withdraw myself) BUT, the brain will heal, slowly, painfully, and in its own way. We have to do whatever we have to do to get through it.

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  13. I’m 19 months into my hell. 19 long months of hoping the next day will bring some relief. In the first 6 weeks without Xanax the Dr said it was only a couple more weeks of suffering, then it turned into a couple more months. My journey actually started 18 months or so before that, what I know now was tolerance withdrawal, which puts me at about 3 years of suffering. Strange pains were popping up in my hips and arms, tingling and numbness, and sometimes walking into a wall. As soon as we started the taper there was no denying the Xanax was the culprit. The pain was immediately horrendous, loss of bowels and bladder, insomnia, anxiety, tremors, ringing in my ears… It was debilitating. They weaned me in 6 weeks and I’m learning now that is not the safest way. I’ve been to countless doctors before I found the Ashton manual and benzo buddies. What has this last 19 months has been like? Well…I had a root canal for zaps in my teeth that I have now learned was wd. I have had my bladder scoped for cancer, because random urgency and blood in my urine was odd. I was one treated for an infection with Cipro, and like others had to stop it for the horrendous leg pain. I live daily with leg and foot pain in varying degrees, and often feel like I’m walking on a marshmallow surface. I can go from happy, to completely unfeeling, to angry in minutes. My eyesight is awful in one eye, and I truly believe that’s related, since it comes and goes with waves. My body temperature is not regulated correctly, so I’m always uncomfortable. I have benzo belly where it bloats like I’ve swallowed a balloon and is painful. Nothing in my digestive system works correctly, so I’ve been treated for deficiencies, which compounds most symptoms. I have adrenaline like rushes in the night that wake me suddenly at 4am. My heart races continually, so that my Fitbit calculates crazy active points. I know I’m probably forgetting a few, but it’s overwhelming to last them. Thankfully I have a boyfriend that is very understanding, and always wants to help, he definitely brings me peace. I’m forever hopeful that I will recover, but I’m honestly losing hope…

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  14. I`ve already mentioned my husband Phil but what really is missing from all the stuff about coming off is what happens after ie post the withdrawal schedule . There is a great need for help here and it isn`t in Birmingham ! Phil has delusions ,gastric pains which are new ,painful teeth and pains in his legs when he stands (this stops him from exercising as he should) and loss of weightetc . There needs to be more publicity about this phase and what might help -certainly to meet or discuss with fellow sufferers and for GP`s etc to realise that in this phase support is needed to encourage and be positive and for there to be sympathetic understanding about this apparently `mad` phase where the ex dependent /victim is reassured about the symptoms and doesn`t think they are suffering from dementia. Here in Brum a tranquilliser support group as they have in Bristol and elsewhere would help . I have to be optimistic ,there is no alternative and I have to encourage Phil but this is difficult so you ones who have succeeded in getting back to a normal life ,please tell it how it was so that those like Phil can be encouraged to believe that they too can succeed.

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  15. Just another comment about Phil`s legs and an explanation that is plausible -benzos /tranquillisers relax the muscles thereby making it harder for them to move and this is the cause of the pain -although Phil has finished tapering the diazapam resides still in the fatty tissue . Margaret

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  16. From Margaret,we have to complain and hurt the people who caused the suffering ,the doctors and psychiatrists ,the biggest drug pusher in the UK . I COMPLAINED TO THE GMC AND THE PARLIAMENTARY OMBUDSMAN . THE GMC TOOK MY COMPLAINT TO INVESTIGATION LEVEL AND THIS MEANS IT WILL BE ON THE DOCTORS /PSYCHIATRISTS RECORDS FOR LIFE AND THE ombudsman upheld my complaint . Prof Lader thinks that litigation will affect change but victims do need to complain.

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