Tag Archives: Intracranial Hypertension

Learning Patience: Eighteen Months of Spinal CSF Leak Recovery

“What doesn’t destroy me makes me stronger.”

 – Martin Luther King, Jr.

This timeless quote has certainly been my experience over the past four years or so of having – and then recovering from – a long term spinal CSF leak. Although, to be honest, at times it did feel like I was being ‘destroyed’ through the process. My journey has taken me to immensely dark places of wrestling and torment on so many levels.

It often felt like so much of who I was – at the deepest level – was simply being destroyed.

However, as I slowly recover physically, mentally and spiritually from the trauma of the last four years, I can see more and more how even what felt like ‘destruction’ has actually ultimately made me a more rounded, secure, loving and compassionate person. I have found that some things, and attitudes in my life, needed to be ‘destroyed’ or at least ‘shaken’, so that I could become the person I am now.

I am stronger on so many levels – but the strength comes from a more authentic place.

The strength comes from a deeper acceptance and acknowledgement of my human frailty and weakness. I no longer feel the need to have to ‘muster up’ an outward – or even ‘inner’ – show of strength to look like I ‘have it all together’. Instead, I can rest in my weakness and rely on God’s strength to carry me through the ongoing challenges of life in a more REAL way.

And there are ongoing challenges…

Eighteen months since my fourth high volume (40ml) lumbar epidural blood patch sealed my leak, I am still not back to where I was before my accident in January 2015.

My head, spine and nervous system still do not operate as they once did.

And yet…

Month by month I see more of the new ‘old me’ being restored.

Slowly… gently… patiently… Becky Hill is returning to a ‘fuller and deeper strength’.

But did you notice that I said the ‘NEW ‘old me’?

I had to add in that extra ‘new’ …. because the ‘old me’ doesn’t actually exist anymore in many ways!! And in fact I wouldn’t want to return fully to who I was before my accident anyway. Because there is a ‘new me’ that has emerged from the ‘wilderness cocoon’ I was catapulted into for those years. It is the ‘new me’ that will walk into the future and face whatever comes my way.

It is the ‘new me’ that is better in many ways than the ‘old’

However, the reason I am writing this article is to get into the nitty gritty of my experience of spinal CSF leak recovery. I want to continue to tell my story in the hope that it connects with and helps you, or someone you know, on their own seemingly impossible journey. I want to tell you the REAL tale of what it’s like to walk along such a difficult and desolate road, whilst attempting to keep focusing on the beautiful horizon of hope and redemption.

A new horizon that thankfully, for me, is growing ever closer.

So let’s get back to basics.

What is my life currently like day-to-day, eighteen months into recovery from a nearly three-year spinal fluid leak?

Corrie ten Boom said:

‘Worry does not empty tomorrow of sorrow; but it empties today of strength.’

That has had to be my ongoing ‘mantra’ throughout my illness and recovery. At first, fears for the future and fears of relapse consumed and crippled me. Unsurprisingly, of course, because – until this last blood patch – that had been my very real experience. These fears have reduced so much through a combination of learning to stay focused and thankful on the present, whilst accepting what IS today’s reality, and also seeing the progress that I continued to make day by day. I had to ‘throw myself’ into God’s arms of grace to find the strength to keep moving forward and keep trusting that things would keep improving.

As they currently do!

If you try and fight the slow process of recovery to ‘speed things up’, I found it simply makes you worse! Your body can’t handle the stress of the striving to do more than it can do. You instead have to ‘fight’ from an inner place of strength, peace and acceptance of the way things currently are, whilst being gentle with your body and mind as you trust for better days in the future.

The reality is, my head, spine and nervous system still struggles with hypersensitive reactions to changes in ICP (Intracranial (head/ spinal fluid) pressure). I still seem to have some ‘higher pressure’ issues in my head and spine (as I talk comprehensively about in my year of recovery update). The same old movements and actions still bring a clear reaction. My head, neck and spine fills with pressure, my ears pop and crackle, my cognition (mental processing) gets a little more sluggish, everything feels harder, and I often have to just take some ‘quiet time’ alone to still my head.

This might mean being silent for a bit, sitting down quietly or going for a quiet walk.

But I have to say that this becomes more and more manageable and less and less of a major problem. The adjustments needed are not so dramatic anymore. They are still there, but more subtle. And they thankfully keep improving. Over time you realise you are less aware of symptoms – they are still there but less and less prominent. They seem to impact things that little bit less week by week, month by month.

That’s when you feel like you are recovering more of the ‘old healthier’ you.

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Here are some of my personal ongoing symptoms and the way that I approach managing them. They may not be the same for others, but I share this to help educate other sufferers, their family and friends, and any medical professionals that may be reading this blog. This way, we can all show more understanding and compassion to one another and ourselves.

  • My head can still get very overwhelmed with a lot of things happening at once. It’s the ‘layering’ of things, one on top of another, that causes the biggest issue. Noise especially. My family and I are all natural singers so we love to have music on, and their default can be to sing along (singing can still be more of a challenge for my head). But I really struggle with both the music and others singing simultaneously – especially if there are other noises around too. It becomes a ‘mental overload’ for me, as does trying to think, listen, talk and cook at the same time. I often just can’t ‘compute’ it all as well as I used to. But this is also all improving over time.
  • Multi-tasking is slowly getting a little easier but is still a lot harder than it was before the accident. It’s again a ‘layering’ issue.
  • I can’t rush about, which although frustrating has actually taught me to ‘flow’ through life more calmly, and to be even more organised. I have to keep moving around gently without rushing about. My head and spine can’t take the twists and turns that rushing often brings. Also, moving around and talking a lot at the same time is still very hard. I can focus better if I stay still whilst talking.
  • Speaking for a long time can be hard still, especially if my head is already feeling more hypersensitive, or if I’m walking or moving about at the same time. I can talk for noticeably longer than I used to be able to though, which helps me with relationships in general, as well as with the mentoring and pastoral visits and teaching groups I do with church. I do find once I have talked for a while I often need some ‘quiet time’. My family know to let me be quiet, and I often put my headphones in and go for a walk, or focus on being quiet to still my head.
  • I still spend quite a lot of time being quiet at home doing the housework I can do, looking after my family and cooking. We love having people around for food, or to stay, so we are really enjoying re-discovering this joy of ours. I just have to plan everything well in advance to avoid any last minute stresses. I also love to cook for others who are struggling for any number of reasons (as people did for us when I was at my worst) so I often take food with me on visits to suffering people. I have been able to increase my ‘pastoral visits’ and the church admin that I do from home. I also continue to teach and speak in smaller groups and do a lot of ‘one-to-one’ personal development work with people. I am so very thankful to be able to take on what I can, when I can through our church, and this it fits in with our home life and me keeping on top of that.
  • Bending, lifting and turning my spine and neck still makes my head worse. I usually get a burst of pressure into my head that can take a little while of being calm and quiet to clear. Generally, the straighter I keep my spine the better. However, it does mean that I remain very careful with movement and what I carry. We still have a cleaner (who we employed when I was leaking) who comes for a couple of hours every two weeks to do hoovering, mopping and bathrooms, since this would involve at a lot of bending or lifting for me, and I avoid it where possible.
  • I am still very careful to always go on my knees or crouch instead of bending my back to get things from low down. This action is better for my head and also protects my spine (although it’s not as good for my poor knees. However, the garden kneeler I bought does help a bit with that in the kitchen and outside!!). But I’ve found that it’s just not worth pushing my spine and head. It’s too uncomfortable (sends pressure into my head) AND too much risk for me to see how much I can ‘push’ things safely. There are too many unknowns to take the risk, too many memories of multiple relapses. And treatment and recovery takes such a long time, if I was to relapse again. So I keep movement and general rehabilitation gentle and safe. I want to give my spine the best chance of full and lasting healing.
  • I can carry much heavier things than I used to (with clear self-imposed limits) but I avoid lifting them from low down and I always – by default – tend to carry things against my chest with both arms i.e. one ‘heavier’ shopping bag at a time. This seems to put less strain on my spine and so is better for my head and I guess protects my spine more too.
  • Bending my head to look down (i.e. to read, write or use my phone) is still uncomfortable and can send more of a ‘pressure rush’ into my head. But again, this is improving, and I am aware of it less than I used to be.
  • Sitting down for a while in one position can leave my spine and head full and my body very stiff, possibly linked to my spinal nerves and the pressure changes throughout my spine. So I still have to regularly get up and have a walk about.
  • If I sit down I am still better sitting on a harder surface with a very straight spine. Sitting on the sofa is especially bad for my head. If I’m watching a film or something of length, after about 30-45 mins my head can often feel fuller and cause me to yawn. I can feel very sleepy and my ears start to pop. I often have to get up and move around slowly to ease it a little. I can’t relax back on the sofa or lie down on it either – it’s too uncomfortable for my spine and head.
  • Going to the loo can still affect my head, I have to be very careful not to strain in any way. Even normal slight straining (just going for a wee) can still affect my head, especially first thing in the morning or if I’m trying to clear my bladder last thing at night.
  • When the pressure increases in my head, the tension and pressure in my neck, spine (particularly the bottom of the spine) tangibly increases as well. I feel it as a full pressure-like pain which is uncomfortable, but not unbearable.
  • In the mornings (especially but not exclusively) the feeling of pressure increasing in relation to action or movement can still occasionally make me want to cough, sneeze or even gag. It’s a bit like the sensation of having a ‘head cold’. This is especially true if I end up talking too excitedly OR too frustratedly (normally with difficult children :-)). It can also happen when I am getting ready and using more exertion to put on clothes and things like socks (even though I rest my foot on the end of the bed to avoid bending to do it). But it will normally subside reasonably quickly with some quiet and still time. It has also improved a lot recently.
  • The weather being rainy and stormy can make the above a bit worse (probably due to atmospheric pressure changes), as can having my monthly period.
  • I still have some light and noise sensitivity. Particularly to flashing lights, fast moving images (both of which can still feel overwhelming and make me feel nauseous) and listening to heavier music with a lot of drums and beats.
  • The worst times for my head result from increased stress, rushing or a lot, or talking a lot whilst doing things. I had an occasion a couple of weeks ago when I had to get ready for a church group that meets at our house weekly. Matt was away with work and one of my daughters was being persistently ‘difficult’ and talking frustratedly at me a lot. It completely overwhelmed my head, which quickly filled with pressure, and everything just felt so difficult to do until I could hardly think straight, or concentrate on anything, and simply felt tearful. In these situations I just know that I have to be completely silent to get what I need to done, then try and be as still and silent as I can until people arrive. But sometimes convincing my kids that I cannot deal with talking to them any more when they are already frustrated is the challenge. It took a little while of being very quiet but, by the time people arrived, my head could handle a bit more and I could lead the meeting OK. (Thankfully we began by listening to a recorded group Bible meditation for 10 minutes, so I got to be quiet – which helped settle my ‘full’ head too).
  • Sometimes a lot of talking, stress or attempting to rush can build the pressure and leave me feeling a bit sick and nauseous – like the above occasion did at first.
  • My general biological ‘coping mechanisms’ are still not what they once were. My body and head still cannot physically – and subsequently mentally – cope with and manage stress very well. I was always pretty good at coping with stress and pressured environments before my leak, but now I have to very carefully manage stress and anxiety because of the natural impact it has on ICP. (As I talk more about in my year of recovery update post). As with everything else though, this is thankfully improving slowly but surely.
  • The acute headaches I got post-blood patch whilst lying in bed – especially when I woke (that I mentioned in my year update) have improved a lot in the past two to three months. So I can thankfully generally stay in bed, even if I wake in the middle of the night or early morning, rather than having to get up at crazy hours. But I still often feel uncomfortable and have a milder headache, or my head will especially feel strangely ‘full’ (sometimes it’s still a bit worse and I just have to get up). So I don’t really do ‘lie ins’ and I still NEVER lie down in the daytime. My sleep can fluctuate a bit too, although I tend to have really good times followed by more wakeful times. But that is normal for many people anyway.
  • I am now medication free! About 3 months ago I finished weaning myself fully off the last of my Nortriptyline prescribed for neurological pain. I believe taking it somewhat helped some of the higher pressure symptoms from a couple of months after the last blood patch in September 2017, but more recently I wasn’t sure it was doing much, and I was tired of the constant dry mouth. Coming off it slowly didn’t seem make any significant difference to my symptoms, apart from I no longer have to drink as much in the night or early morning, or chew gum constantly to deal with the dry mouth. Interestingly, though, when my head pressure increases, the dryness in my mouth can return too.
  • My heart finally seems to beat pretty normally again these days. This took a long while to settle from the constant mis-beats and irregularities that a previous ECG confirmed (but were considered annoying but not concerning medically) when I was leaking badly during the summer of 2017. My leak definitely seemed to affect my heart, and then the increasingly poor conditioning probably made the issues worse. Even after successful treatment, this took a long time to gradually get better. All the strange beating patterns made lying down and relaxing harder at first, as they were more prominent when lying down. And this all added to the anxious feelings at the time. So life is more restful not having this problem anymore.
  • I have had to learn to live and ‘flow’ from more of a place of ‘inner peace and rest’. I am learning a whole new, more peaceful and less chaotic and busy ‘way of life’. I have embraced the lessons learnt from this over the past years and vow to maintain a more restful balance in my life moving forward. I want to resist falling back into a more ‘busy or chaotic life’ in the future, even when I can cope with those pressures more. Living from a place of ‘spiritual peace and rest’ is the best way to live long term.
  • I still find long, gentle walking helps my body, head and mind – as well as my connection to God. So I still generally take two approx. 20-50mins walks a day, when I can. I appreciate the surrounding countryside so much more since my years of debilitation. My pace has also picked up a lot in the past year, but I still cannot rush.
  • Filling my mind with positive, calming, spiritual thoughts is so important to enable me to live from a place of increasing peace, rest and love.  I am enjoying using this new peaceful Christian meditation app to help with this (mainly whilst walking or quietly doing housework) www.soultime.com. It’s a great resource to bring more peace, rest, calmness, love and spiritual connection into my day. I also love more peaceful contemporary Christian worship music but generally have to avoid louder heavier music.

So that is a summary of some aspects of my day to day life and the ongoing challenges of recovering from such a life-changing injury.

People often ask me these days …

‘Do you think you will ever get back to feeling ‘normal’ like you did before all this?’

I have learnt to answer honestly…

‘I simply don’t know’.

Perhaps only time will tell!

But my hope and faith rests in God alone and in the fact that I do see so many ongoing improvements all the time. Yes, they are slow, often so very gradual, and sometimes frustratingly subtle in the short term. And yet, as we look back we can see the MASSIVE changes in the past year, and even in what I can do and cope with over the past six, or even the past three, months. That is the hope of continual improvement we hold onto.

When you can keep seeing change it does encourage you to never give up believing for better times ahead.

When I was obviously leaking, we would, at times, also see very slow, gradual improvements. But any improvement would ALWAYS seem to plateau in the end. I would always reach a kind of ‘lid’ that I couldn’t break through. And even if things remained a bit better for a while (especially after treatment) in the end they would always regress or I would fully relapse again weeks or months later due to clear or unclear triggers.

So, seemingly having no ‘lid’ to my ongoing improvement brings us so much encouragement for the future. 

So again I want to share my hope with you all.

It’s a clear hope for the future but mixed with realism about the journey. My journey has been made somewhat easier in that my family never relied on me bringing in an income of my own. Thankfully my husband’s salary covers our family’s living expenses. My ‘church work’ is voluntary – which has actually been beautifully freeing because I can balance it all with the general demands and pressures of family life.

Had I had to try and get back to a demanding career, or had we been reliant on me getting back to earning a wage, we know that it would have made my recovery and our family’s lives unbearably chaotic and perhaps impossible. The reality is, even now I know I couldn’t function working full or even part time in a busy and intense job or career. It’s important that people are aware of this as a potential longer term consequence of living with a spinal fluid leak followed by walking the slow and complex road to recovery.

It is not as simple as ‘being fixed’ then quickly ‘getting your life back’!!

Life may now look very different to what it did before – long term.

And yet, we are all different…

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Our stories and experiences will be different. Each of us has to learn to work it all through as best we can with the lives we currently live. Some people may find that they can give more time and energy to re-discovering a job or career, especially if they don’t have so much responsibility around the home and family, and if they have a very understanding employer that is aware of their limitations and their need for a quieter work environment. It’s a balancing act and will take much wisdom to find creative ways to embrace what you can do, whilst being very aware of the limitations and sometimes unknowable risks of what you can’t.

This all takes a certain level of acceptance in finding true peace about your ongoing limitations.

So my deepest prayer for all of us is this…

That we may all receive more of God’s grace and strength to find the way through the unique storms, and sometimes living nightmares, that this broken world throws at us. Your story might have some parallels with mine – or it might be completely different! However, despite the differences, ALL of our stories are powerful. So please consider who your own story might help – today, or tomorrow.

And please don’t suffer in silence!

Speak up, get the help and support you need, and then maybe you can BE help and support for someone else.

Because you never quite know what a difference your seemingly ‘boring’ tale of suffering and pain might have in the life of another desperate, struggling and often lonely soul. You never know what your REAL tale of living in and rising from the ruins of destruction might mean to someone else who currently feels so trapped and destroyed by their seemingly never-ending struggle.

As I was reminded recently in these profound words;

“Your story is the key that can unlock someone else’s prison.”


Please do comment or ask any questions below. Or alternatively you can email me at beckyhillblog@outlook.com

To read more about my story of living with and recovering from a chronic spinal CSF Leak click here.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a short or long term complication following epidural blood patching – as I seemingly experienced at least after my last three blood patches. 

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstandings and great distress on my already immensely long winded and very difficult medical journey.

Rising Again: My Year Of Spinal CSF Leak Recovery

“Time is not really spent. Instead, it is invested in a future we cannot see.” – Alicia Britt Chloe

When I read this quote recently in Alicia’s book ‘Anonymous’ it resonated with my perspective on life. Our time on this earth should not simply be ‘spent’ and should certainly not be ‘wasted’. Instead, all of our time is an investment for a future we cannot yet see – whether it’s intentional ‘learning or doing’, time invested in family and relationships, or facing a set of circumstances which force us to use our time in a new or unforeseen way.

If we can see like this, then we can know that nothing needs to be wasted. Everywhere our life takes us – both the good and bad – is an opportunity to learn, grow and invest into who we are becoming. It’s also an investment into who those we parent, lead and influence are becoming.

All life’s circumstances are opportunities to invest in the future – whether it’s ours, or others around us.

That’s how I’ve had to see the last four years of my life. Most of the first three were spent battling a debilitating spinal CSF leak, and the last has been all about investing in my recovery. Which has again required great patience, raw resilience and immense endurance.

The pathway of recovery, after a long term spinal fluid leak, is often a long, arduous and immensely slow process – even after successful treatment.

The wonderful news is that – a year on from my successful 4th blind lumbar (40ml) epidural blood patch (EBP) – I am doing comparatively well. I have been upright all day every day since mid December 2017 (some days recently that is from 4am – 11pm!! If I happen to wake up early and have to get up due to ‘lying down’ headaches).

I can walk for miles, happily drive locally, get a lot done at home and look after my children (now 11 & 13). I can cook & bake for our family and others, spend quality time with people, go on holiday, and invest increasing time in my life-calling of pastoring and helping hurting people, in and through our local church. This is currently mainly through a lot of one-to-one mentoring and personal development time with others, as well as teaching in small group settings. I also do bits of admin for our church. Thankfully this is all flexible and I can do what I can, when I can, without any added pressures.

I have so very much to be abundantly grateful for. Last year I was acutely unwell and utterly debilitated – initially by the spinal fluid leak, then subsequently by severe post-treatment rebound high pressure symptoms. For four months over the summer of 2017 I had to lie down flat nearly all day, every day, and could only manage an exhausting 10-30mins upright at a time. Then after my EBP I just had a pretty much constant debilitating non-positional headache – amidst many other symptoms (as I talk about in this post) – for months. It is hard to explain how extremely unwell you are with both those conditions, and how confusing it is to work out which is which after treatment.

They are both truly awful to endure!

The road to full healing, even after successful treatment, is not an easy one at all. After a while, you can see that you are making some progress – albeit slow – in moving up the mountainside from the darkness of the valley below. But even the mountain climb of recovery is utterly exhausting in so many ways. It continues to take so much endurance, patience and resilience to scale the never ending rocky slopes.

But I am getting there….

In the light of how ill I was for so long – I am doing exceedingly well! I haven’t been this well since my accident in January 2015. In the light of how healthy and busy I was before my accident – and the onset of the leak – I am still not fully well. But I’m increasingly heading in the right direction.

How ‘well’ I am now is all a matter of perspective. I have to keep focusing on the wonder of how far I have come and the fact that I can easily be upright all day, which is a small miracle to me. So I must embrace all I can do – which is comparatively a lot – and not resent or get frustrated with what I can’t!

The slowness of my recovery can certainly feel frustrating at times – to say the least. Who doesn’t want to get back to full health and be able to embrace more of the life they once knew? And yet I’ve begun to learn and see more of the wisdom that can be found in the slowness. It’s not just my body that needs to heal physically – I (and my whole family) have needed to heal holistically, in so many different areas.

Having lived with a chronic debilitating neurological illness for years, and then experiencing the slow process of holistic recovery, I believe in some ways the whole journey through illness, healing and recovery can be viewed in a similar way to grief. It’s a journey, a passage, we walk through. It’s not something we experience one day, then ‘get over’ it the next. It lives with us as we attempt to move forward with our life. We have to wholeheartedly face, embrace, and walk through what we discover on the journey of sickness and healing – whether traumatic, painful or beautiful. We must give it the time and attention needed to move ‘through’ it, as well as we can, and find more lasting healing in every way.

My mind, emotions, memories, and soul need healing just as much as my physical body. They have needed to find increasing restoration, fresh confidence and new freedom.

You can’t ‘rush’ holistic healing!

It’s a process of working through complex and traumatic memories, emotions and thoughts. Unless you’ve walked the spinal CSF leak road, or a similar long term debilitating illness, you may not understand the trauma involved at every stage. Simply the daily holistic trauma of living with the illness itself is enough. When ‘leaking’, simply being ‘upright’ is often utterly traumatic for our bodies, brains and minds. Then add in the trauma of trying to seek medical help and support for a condition that very few doctors really understand (IF you can get diagnosed and ‘believed’ – that is). And add to that the mental and emotional trauma of being so debilitated and unable to function, anything like normally, in the short and long term. With this combination you can see that there is a lot to work through – as I write about in one of my most widely read posts, Living With a Spinal CSF Leak.

Sometimes it’s not until you start getting well that you actually realise how exceedingly unwell you truly were for so long. This is traumatic in its own way. The fear of going back there again can be overwhelmingly crippling – especially in light of how long recovery takes. This isn’t helped when, like in my own case, multiple major relapses have been your very real past experience. Moving on from the fear of relapsing again is so very difficult. True freedom from this fear can only come slowly, as your confidence builds with the longer you go without getting worse again. These fears can also leave us completely confused and unsure of what we should allow our body to do or not do.

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On a purely physical level, I have also discovered that, after years of leaking spinal fluid from your spine, your whole nervous, and intracranial pressure, system seems to be completely messed up!! Over the months and years of leaking I have become hypersensitive to even the smallest pressure changes in my head and spine. These physical ailments added immensely to the struggle to cope with even small amounts of stress and anxiety whilst leaking and during recovery. This is due to stress and anxiety naturally affecting intracranial pressure anyway, meaning that the physical, mental and emotional become even more intrinsically linked. Even more so because any heightened emotion, especially crying and laughing (or raising your voice in excitement, passion or anger), are brutal on our already hypersensitive heads.

I found the only way to try and deal with all this was by learning to stay as calm, peaceful and quiet as possible. (I already experienced this from leaking – as can be read in this article). This means we have to avoid stressful and anxiety inducing situations when we can – whilst ‘leaking’ and especially in the early months of recovery – which is not easy when we are trying to holistically manage and recover from a debilitating illness, still have to deal with medical professionals and hospitals, and have a family and home to look after (at the very least). It would be even harder if I had had to try and go back to any of a massive spectrum of jobs and careers which do not allow an abundance of time for calm and quiet individual activity. I cannot ‘multi-task’ anything like I used to be able to. Such things are still often way too overwhelming for my current cognitive capacity – although still obviously improving. Even now I also still struggle to ‘rush about’, especially in ‘busy’ or ‘bustling’ environments (even more so if I have to talk to and interact with others as well) so I have to try and maintain more order and calm throughout my life than most people.

Initially, even simply doing more ‘normal’ things again – like going to shops or being in an environment with lots of people – can induce anxiety. As it would for anyone recovering from a long term, previously debilitating, medical (especially a neurological condition). However, this then perpetuates itself because we are already so hypersensitive and thus prone to such things. These environments are already ‘taxing’ on our ‘foggy’ heads because of all the overload of mental stimulation. But having to interact with people and talk a lot can also soon leave our heads even more full of pressure and thus struggling to concentrate and cognitively process what is happening and how we need to respond. So we have to be careful about how much we subject our heads to.

This unfortunately meant I often found myself ‘avoiding people’ at times – especially for the first few months of recovery. This was truly heartbreaking for me because I really do love people and like to talk to them about their lives. But talking, for even short periods of time, would simply make my head worse. Although this has very much improved overtime, my head getting worse from simply talking can still regularly be an issue.

The other key problem with our recovery is that to improve our physical conditioning we have to exercise. But exercise involves exertion, which is another trigger for the higher pressure hypersensitivity. So again it’s a vicious cycle. After the first awful couple of months post-treatment when I still couldn’t walk far at all, I subsequently found that gentle, and initially slow, walking often helped my head more than trying to rest lying down or reclined. Since early December ‘17, I decided to keep my body upright all day and quickly increased the amount I walked up to an average of 3-5 miles a day over 2-4 separate walks. The walks started off very slowly – but my pace slowly increased as my head and spine improved. Long walks – alone – also gave me, and still give me, the much needed space to calm and relax my body and mind, as well as improve any anxiety and my general conditioning. Walking is also very liberating after the many months over the past few years I couldn’t really leave the house.

I did discover that walking was much easier on my head if I walked quietly (or normally listening to something uplifting, inspiring and calming on my smartphone) on my own. Due to the increased breath use – walking and talking at the same time are more of a challenge. I can walk much further more easily on my own than with others. Similarly, I can also get more done at home when I am not required to talk at the same time. Moving about a lot and talking (especially more loudly) can be a bad combination for my head. Although this slowly gets better over time.

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Other ongoing physical symptoms include varying head pressure often felt mostly in the lower forehead and especially around and behind the eyes when worse. (When particularly bad it can feel like your eyes might burst out of your head). But I can also feel pressure in the occipital region (bottom of skull/ top of spine) and down the spine (especially in the lower lumbar spine). But it’s a slightly different sensation to ‘low pressure’ (leaking) occipital/ neck ‘pulling’ headache. Although harder to differentiate in the early days of recovery.

The main difference that slowly becomes clearer (after much initial confusion) with this ‘higher pressure’ type of pain is – rather than increasingly getting worse throughout the day (or even over a short period of time being upright) – like it did when obviously leaking, it tends to instead come and go at various points in the day according to what is setting off the ‘hypersensitivity’ at that time. Even now, it can still get worse until my head feels full, my ears crackle and pop and sometimes it makes me yawn a lot and feel rather sleepy – especially due to the pressure behind and around the eyes. It can also make me feel slightly shaky, rather detached from the real world, my vision can get slightly blurry, my cognitive processing gets a bit more sluggish, I can occasionally feel a bit nauseous (in the early weeks after my EBP it could often make me physically gag) and my heart can beat noticeably faster. Hence adding to an ‘anxious’ feeling. But this normally gets better again if I spend some time staying upright but being quiet, calm, keeping my spine straighter and move about more gently and slowly. If it gets too bad – often a quiet walk or sitting quietly for a bit helps.

The other main difference to ‘low pressure headaches’ is that it doesn’t get better lying down – although lying down may still rest your body somewhat – hence the confusion. I never lie down in the day anymore because it tends to make my head worse. However, all of these kind of reactions mentioned above are slowly getting less acute or intense and much more manageable as recovery improves.

Waking up in the mornings can also still be problematic at times because of the lying down. I still often (most days) have increasing headaches around and behind my eyes and in my lower forehead, and can sometimes feel slightly nauseous soon after I wake up (this is especially prominent if I try and stay in bed too long once awake). Unlike when ‘leaking’ – I subsequently find that I must get up once I have been awake a little while – whatever time it is. I am known to get up anytime from between 3:30am-8:30am depending on the day and when I happen to wake up (unless the 6:30am alarm on school days wakes me first). Once I do get up the main headache goes away quite quickly these days – although my head and spine can remain feeling strangely ‘full’ but without obvious pain. (In the initial weeks after my blood patch, the headache wouldn’t always ease much getting up – at least at first. I think the exertion of getting up and interacting/ talking with my family would complicate it and I could often feel very unwell and often feel sick and gag from trying to ‘do things’. So then I would then try and lie down again to be still and quiet – but would end up still feeling very ill and then simply continue to physically gag from the nausea and increasing pain from lying down (which simply adds to the exertion headache – perpetuating everything). It’s tormentingly confusing and very hard to get relief in any position in the early days of recovery. Medication (initally acatezolomide, then after 2 months a switch to nortriptyline, in my case) can help some of the underlying problem or pain. But not necessarily the hypersensitive reactions to changes in intracranial pressure. Which is why it is so utterly confusing and brutal on your mental health – which adds to the anxiety we are already prone to – as I write about here in my 6 month post patch update).

Bending my neck down to read, whilst walking or to look at things (like my smartphone), or bending my spine to do things – tends to also obviously increase the pressure in my head and make my ears feel full and pop. As does carrying moderately heavy things. So I am still super careful and gentle with movements involving my spine. I just can’t be sure that it’s OK to lift and bend much still, so I still self-impose many post-EBP style restrictions and tend to always kneel first to pick things up off the floor, unload the dishwasher or put washing in, or take it out, of the machine. Over time I have gently allowed my spine to bend and lift a bit more – but only very carefully and cautiously.

During my years of leaking and my experiences of rebound high pressure (post treatment) I always found sitting down would tend to increase the pressure in my head/ spine or increase my leak symptoms when leaking. So I used to stand a lot more when upright. This has improved so much and I can sit for longer and longer, but it is often still harder for me to sit (relaxed) for longer periods of time (the sofa can be the worst place due to the softness of the seat). I actually find I am better sitting with my back very straight and legs bent directly in front, with the soles of my feet touching the floor. Slouching, leaning back too far or putting my feet up is no good, at all, for my head or spine.

I know the sitting issues have also been aggravated too by the general ongoing tension up my spine. I personally hypothesise that much of this is probably down to the higher pressure/ higher volume of spinal fluid pushing against my nerve roots. But it’s obviously also linked to the years of pain and physical tension in my head and spine and also the lack of natural movement. It’s hard to know how to combat this much whilst still restricting movement. It improves little by little and lots of walking and the general rehabilitation of doing things around the house and going shopping (limiting how much is carried) etc helps it a lot, thankfully. But I have found that this can’t really be overcome by trying to ‘force it better’. Gentle movement and gentle lifting, whilst remaining very patient with regards to ongoing ‘pressure issues’ is so important. I just have to listen to my body and head. Trying to ‘push myself’ and rush this process of less pain and tension in my head and down my spine can just lead to relapse and in hindsight has probably contributed to my own before.

(In hindsight, I now think that I experienced rebound high pressure symptoms at least after my second (11 months post leak onset) and third blood patches (15 months in – when I was also treated with acetazolomide) but I always got worse again many weeks to months later. I do not know if I was also still leaking a bit too after any of my patches (apart from a bit after the first perhaps) or what exactly brought on the consistent obvious major relapses. (Apart from when I fell over again badly in May 2017). I always got much better after blind lumbar high volume EBP and could spend much more time upright – often all day – over the following weeks and months – but was never symptom free. But it’s all FAR too confusing to say for sure and the confusion only gets harder the longer you have been leaking. Medical professionals in the UK normally do not understand these medical conditions enough to support you well eitherWhich makes living through it immensely hard and another challenging battle to fight, whilst you are utterly exhausted and acutely hypersensitive to stress and anxiety anyway. This all contributed to a major crisis in my own mental health (see Breaking Through the Darkness), including acute suicidal ideation, 2 months after my second EBP. This almost reoccurred again 2 months after the 4th patch that sealed me, as I try to describe in my 6 month post patch update). 

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However, regardless of all the immense and overwhelming challenges of living with a ‘leak’ for so long and now enduring the slow recovery process…

There is still so much from the past few years to treasure!

So it’s that which I want to focus on to finish…

Beauty can become even more beautiful once you have tasted of deep pain and debilitation – a theme that I wrote about in ‘Suffering into a Deeper Spiritual Awakening’. I have certainly learnt more about what truly matters in life. I see and notice beauty even more clearly around me – throughout creation and in other people. My heart is so much more tender and compassionate. I truly FEEL others pain much more deeply than I used to. My understanding of other people’s struggles is so much more profound.

If I could go back and had the choice to have or not have the leak – of course in so many ways I wish we had never had to walk through such an awfully traumatic and exhausting season in life.

And yet…

I would never want give up the beautiful lessons learnt or the wonderful people met. I could not deny the privilege of experiencing the depth of the valley of darkness – whilst actually being able to rise and recover again, as I hopefully increasingly move up towards more heights of better health. It has changed and increased the capacity of my heart in ways that I cannot even begin to fully explain. It has stretched my limited perspective and expanded my horizons. It has changed how I see and relate to others and deepened my love – for God and all people.

So with hindsight would I choose to personally go through such a desolate season of pain and suffering – because of what can be learnt and gained?

If I could have known, in advance, what the never-ending, deeply dark, valley entailed, I could not have chosen that road for myself or my family. Nor would I choose for anyone else to go through it either. Which is why I continue to raise awareness about the realities of living with the condition. In the hope that others will not have to suffer as deeply and as long as I have.

But… I would choose the new heights of beauty discovered in and from the depths of pain. Because they have transformed me for the better. They have brought holistic growth and resilience in ways I could never have achieved without going through such a raw deep struggle. I have also been able to connect and help others going through the same hell that I had to.

I have honestly been utterly shattered and broken by the past few years – in so many different ways.

And yet…

To be ‘broken and shattered’ is not always a bad thing long term. It strips you back, shows you what is truly important and gives you a new perspective on life and love. We can then hopefully one day, perhaps one day, become even more stable, loving, humble, understanding and holistically healthy people in the end. Until we can truly see that the years of pain become an investment for a better future – all round – that we previously could not see.

So for all those still suffering immensely with these awful conditions. I honestly feel the depths of your never-ending pain with you – but please take heart! And do not give up hope! Last year I wasn’t sure I could or would ever be well. I wasn’t sure that I had the strength left to make it through another day of fighting on so many different levels. I had again reached the absolute end of myself. But my journey shows that we really do not know what tomorrow might bring. That is why I have wanted to tell you my own story. In the hope that we will keep holding on and hoping for a better future – we cannot yet see – together.

“Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain.” – Richard M. Nixon

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Our family on a beautiful and very blessed holiday (fully upright!!!) in Weymouth, UK, July 2018! (Which we had to cancel in 2017 due to a complete relapse of my chronic spinal CSF Leak). Our children Aimee and Beth were 7 & 10 when this nightmare began and our lives completely changed, they are now 11 & 13.


Please do comment or ask any questions below. Or alternatively you can email me at beckyhillblog@outlook.com

To read more about my story of living with and recovering from a chronic spinal CSF Leak click here.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a complication of epidural blood patching. 

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstandings and great distress on my already immensely long winded and difficult medical journey.