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Free to be me - recovering from 40 years on benzos + brain injury


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I never thought I would post a success story.  I have been a member of BenzoBuddies since 2014, I have received huge support here and although not around much nowadays, I spent a great deal of time here for a number of years.  I always hoped I would recover enough to have some sort of a future, but that was as much as I had expected.  I had been on benzos for nearly 40 years, had never been well during that time, and had a catastrophic reaction to coming off them.

 

I was first prescribed a benzodiazepine, Nitrazepam, in 1975 by a neurologist for jerking of my arms and legs (myoclonic jerks).  My health rapidly deteriorated within a matter of months.  I was a student, working away from home during the summer holidays.  Not long after I returned home I took an overdose with the full intention of killing myself, it had never entered my mind to do this before.  I was diagnosed as having had a “nervous breakdown”, referred to psychiatry and thereafter was seen as a psychiatric patient, diagnosed with depression and personality disorder.  I was to attempt suicide numerous times after that and am lucky to be alive.  Multiple antidepressants then came my way (tricyclics, MAOIs, SSRIs, SNRIs) and ECT was suggested at one point but I refused.  As a result of what happened to me in the 1970s & 1980s, I ended up dependent on Nitrazepam and an antidepressant (usually I was on one at a time) for nearly 40 years.  I didn’t know the risks of dependence in the 1970s, that information started to come out in the 1980s.  I did try to come off the Nitrazepam but no proper tapering advice was given and I quickly went back onto it again.  I have not functioned normally for a single day or felt well since that summer of 1975.  I always believed it was due to my “mental state” and not the drugs.  I was always chronically tired and cognitively impaired as well as emotionally blunted and somewhat disconnected.  I had always assumed that I had no choice to live like this because I had a “depressive illness” and a deficient personality!!  Despite this I did work full time and went to University and gained a degree.  I also studied for part of a Masters Degree and reached viva for a PhD but decided I could not face rewriting it.  I worked in academic research for the last 20 years of my working life.

 

In 2012, after retirement, I changed GP practice and was advised to come off the benzodiazepine.  I set about tapering from 5 mg Nitrazepam over 3 months (Jan-Mar 2013) and the taper wasn’t difficult.  I hadn’t realised that I was going too fast so just carried on.  I was using the Ashton manual as a guide, I had had a copy for many years.  Over the next 6 months I started to experience various symptoms but was still carrying on with life though it was getting more difficult.  In Sept 2013 I became extremely sick and bedridden.  Unable to tolerate light and sound, unable to stand for more than 5 minutes, just feeling terrible, I didn’t know what was wrong with me.  I spent the next 3 months in bed, in isolation, seeing no-one, in a chemical haze, sleeping a lot, very sick.  By January I decided I needed to see a doctor.  GP, psychiatrist, neurologist all proved unhelpful and I realised I was on my own.  By June 2014, I managed to join Benzobuddies and very quickly was drawn to the Protracted Board where other people were suffering as I was. 

 

The next few years were really intolerable.  I won’t go into all the details here, but I went to hell and back again and at my lowest even made inquiries about assisted dying.  I had intolerable nerve pain, severe depersonalisation/derealisation, my memory was terrible, I could not read or process speech without a huge struggle, I could not stand for any length of time or walk very far.  Emotions were terrible, mood swings, intense rage.  I also had intolerable pressure inside my head and squeezing sensations inside my brain.  In 2017 I tried to force myself to walk and this caused a reaction in my brain, and bleeding at the back of my left eye.  I had to call out ambulances because I could not breathe, but they could not help me either.  I consulted again with psychiatry and neurology, this time with different doctors and insisted on an acknowledgement that I was suffering due to a brain injury resulting from benzo withdrawal, I also obtained a statement that I show no signs of any mental illness whatsoever.

 

Since 2017 I have slowly and gradually improved.  Many symptoms have gone away completely - head pressure, brain squeezes, nerve pain, DP/DR and memory and cognition keep improving.  I still have difficulty reading but now have little problem following conversations unless I am really tired. I have gone from using a wheelchair to get round the supermarket, to using a walking frame on wheels, to walking independently again.  A chiropractor helped me to get back onto my feet, I also went swimming.  I can now walk 1-1.5 miles in a day but has to be broken up into a couple of walks.  I get very tired.  I am now 68 years old and given my long medical history I think this is as good an outcome as I could have expected.  Each year I manage to do a little more than the previous year.  I am back to using public transport instead of taxis and can manage short trips out of town by bus. 

 

However the most important aspect for me is not the ability to function physically but the fact that I finally feel like myself again, the person I was in 1975 before I was first prescribed benzodiazepines, I have never felt like myself in all those years.  This feeling of disconnection is gone.  The benzos had caused an emotional blunting and a disconnection which meant that I could never actually feel normal, it wasn’t a depressive illness at all.  It was quite subtle, I couldn't really work out what was wrong until I came off these drugs.  I also came off Effexor in 2014-15 but it seemed to be the benzo which was causing all my problems as they were there from the very start.

 

I wish everyone well and a much speedier recovery than me.  Even without a complete recovery, there can still be a reasonable quality of life at the end of the long journey.

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40 years of your life.... Thanks to doctors and pills....

 

I'm so so sorry this has happened to you. But I'm happy that you're finally feeling better 🙂

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40 years of your life.... Thanks to doctors and pills....

 

I'm so so sorry this has happened to you. But I'm happy that you're finally feeling better 🙂

 

Thank you very much, it is easy to become trapped, one prescription and no warnings given.  I wish you all the best.  :thumbsup:

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Congrats on your healing! I’m sorry you had togo through this. Are you able to experience joy and connection with people now?

 

Thank you. Here’s to your continued healing.

 

Jim

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"Even without a complete recovery, there can still be a reasonable quality of life at the end of the long journey."

 

Thank you for your story, lookingforward.

 

You have offered much support and compassion during your sojourn on BB.

 

All the best.

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"Even without a complete recovery, there can still be a reasonable quality of life at the end of the long journey."

 

Thank you for your story, lookingforward.

 

You have offered much support and compassion during your sojourn on BB.

 

All the best.

 

Thank you so much, Nova, I wish you well too.

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Congrats on your healing! I’m sorry you had togo through this. Are you able to experience joy and connection with people now?

 

Thank you. Here’s to your continued healing.

 

Jim

 

Thanks, Jim.  I am experiencing joy and connection now, some days better than others, depends how I am feeling.  All those years on drugs there was definitely something wrong, a disconnection from other people.  It is a real joy to be rid of that. 

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A huge congrats to you. You suffered tremendously and managed to get your life in order.

A true inspiration. May you continue to feel better. ❤️

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Thankyou, thankyou LookingForward -- what a hard life you've led.  Now the rewards should come from your dedication to recovering.  Kudos to you -- you made it.

WBB

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Wow, what a story and strength. To be honest, I have also made the same inquiries you mentioned making (after you described that you were in hell). I am also physically extremely disabled still and mostly bedbound/housebound.

 

It gives me little hope that I might be able to walk again at some point! Congratulations on persevering and seeing healing!! I hope it gets better and better for you.

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Wow, what a story and strength. To be honest, I have also made the same inquiries you mentioned making (after you described that you were in hell). I am also physically extremely disabled still and mostly bedbound/housebound.

 

It gives me little hope that I might be able to walk again at some point! Congratulations on persevering and seeing healing!! I hope it gets better and better for you.

 

Thank you so much and I am so sorry you were pushed to make those sort of inquiries, it really is a tragedy that these drugs can push us to such despair.  I was in bed mostly for maybe 3-4 years I was very worried I would lose the use of my legs.  I was at the point where even sitting up had become a struggle, and my age of course does not help.  It has been a long haul to get to being up all day and walking every day even if not terribly far.  My legs and back have been negatively impacted, not surprising with so much time in bed and not exercising.  Do try to move as much as you can.  I started off with dumbbells to exercise my arms, in my bed, and have kept that up for several years now, gradually increasing the weight.  Swimming helped me because I could hardly walk.  I wish you all the best.  If you were fit before this started you will be better placed to recover.

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Fantastic news, LF! What a great Success Story after your long, long struggle! I wish you all the very best. You deserve whatever good can come your way after all that you've been through. So courageous!

 

 

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Fantastic news, LF! What a great Success Story after your long, long struggle! I wish you all the very best. You deserve whatever good can come your way after all that you've been through. So courageous!

 

Thanks so much, Lapis, it has been a very long journey and a very odd life.  I hope you have seen some improvements since we were last in touch, you deserve that too.

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This is wonderful news, actually made me cry! because I know how tough its been for you.  Your story is going to bring hope to such a lot of people.  It has been a long journey for you girl, and despite what you were going through, you still managed to  support other members.  Its such a wonderful feeling, getting the real you back,  I remember that happening for me, great feeling. 

 

I wish you continued healing, and a great life, you deserve it!

 

Magrita :smitten: 

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This is wonderful news, actually made me cry! because I know how tough its been for you.  Your story is going to bring hope to such a lot of people.  It has been a long journey for you girl, and despite what you were going through, you still managed to  support other members.  Its such a wonderful feeling, getting the real you back,  I remember that happening for me, great feeling. 

 

I wish you continued healing, and a great life, you deserve it!

 

Magrita :smitten:

 

Thank you so much, Magrita, it sure has been a long and hard journey but if it offers some hope I will be very glad.  I wish you well and so glad you managed to get yourself back also.

 

:smitten: :smitten:

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Fantastic news, LF! What a great Success Story after your long, long struggle! I wish you all the very best. You deserve whatever good can come your way after all that you've been through. So courageous!

 

Thanks so much, Lapis, it has been a very long journey and a very odd life.  I hope you have seen some improvements since we were last in touch, you deserve that too.

 

Thank you, lookingforward. I've actually deteriorated quite a bit, but your example shows me that there could still be hope for me.

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Fantastic news, LF! What a great Success Story after your long, long struggle! I wish you all the very best. You deserve whatever good can come your way after all that you've been through. So courageous!

 

Thanks so much, Lapis, it has been a very long journey and a very odd life.  I hope you have seen some improvements since we were last in touch, you deserve that too.

 

Thank you, lookingforward. I've actually deteriorated quite a bit, but your example shows me that there could still be hope for me.

 

I am so sorry, I really hope that you will see some change for the better, I know how hard it is. 

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Thanks so much for posting your success story, LF! This gives me some reassurance. Wishing you continued healing and peace.  :thumbsup:  :smitten:
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Thanks so much for posting your success story, LF! This gives me some reassurance. Wishing you continued healing and peace.  :thumbsup:  :smitten:

 

Thank you, I hope you will make a good recovery.  :thumbsup:

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Looking forward,

 

I am so glad I came across your success story today.  I am so happy for you! Something told me to peek onto this forum today and I truly believe your story is why.

 

What determination. So glad you are back to feeling like yourself.  This is absolutely beautiful! Brought tears of joy to my eyes.

 

I have been on this forum for about 2 1/2 years and your story is the most amazing thing I have ever read.

 

Bless you. You deserve continued peace & an amazing life.

 

Thank you so much for sharing.

So happy for you!

-Fortitude

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Looking forward,

 

I am so glad I came across your success story today.  I am so happy for you! Something told me to peek onto this forum today and I truly believe your story is why.

 

What determination. So glad you are back to feeling like yourself.  This is absolutely beautiful! Brought tears of joy to my eyes.

 

I have been on this forum for about 2 1/2 years and your story is the most amazing thing I have ever read.

 

Bless you. You deserve continued peace & an amazing life.

 

Thank you so much for sharing.

So happy for you!

-Fortitude

 

Thank you so much, I am very touched by your response, I hope my story can help some not to give up hope.  The outcome may not be the miracle success but the whole journey is a story worth telling.  I wish you all the best.

 

Fiona

 

:smitten: :smitten:

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and here i am pissed off that 1 year of my life was stolen, and all in all i am doing reasonably well now i guess  :o

 

i hope you keep getting better and better and have a long life left of being YOU  :smitten:

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Congratulations to you! A job well done with endurance and strength. May you go on to live a happy new life. Thank you for sharing your story.

❤️😉

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