“Life can only be understood backwards; but it must be lived forwards.” – Søren Kierkegaard
It’s now over seven years since I got ill.
Seven years… it’s such a long time right?
I never imagined seven years ago the way our lives would be so altered in one day.
In hindsight I don’t see the accident as the only culprit for these life altering diagnosis. Yes, the fall seemed to be the trigger. However, the more I have understood the conditions and my potential biological predispositions. The more I realise that it may well have been an injury waiting to happen. And if not THAT day and that fall…
It would perhaps have been another day, another trigger, that created a similar ‘explosion’ of symptoms, a leak, of an arachnoid inflammatory response.
I do have multiple thoracic micro bone spurs in my spine pressing into my dura (that holds my spinal fluid). As seen on a thoracic CT. So it was probably always going to be a risk that one day one might penetrate the dura. Or if not the bone spurs… maybe a spinal cyst (of which I have many) or some other dural weakness.
So as the quote above says … we DO often understand better backwards. Hindsight is often a great revealer – we often see things with more clarity the further on we go! And that can really help – so long as we don’t get stuck in that past, in the memories we can’t change, in the moments now passed. Instead we must choose to accept what has happened, attempt to reframe it and find the best way forward we can…
Despite it! Despite it all.
So that’s what I – what we – have chosen to do.
And embrace the life we have!
I have been meaning to write this blog update for a while. Well at least since I made these last two videos for my YouTube channel. The firstone I published in January is with my husband Matt and was a reflection on seven years since my original accident (a ladder fall) and trigger for the spinal CSF leak & arachnoiditis. The second video was a slightly longer video documenting how I manage my daily arachnoiditis & CSF flow/ intracranial pressure issues.
To make the videos easier to navigate I have included a breakdown summary in the video info section on YouTube. I will add a record of the video summary’s here. To to be able to skip to different parts you will need to view the video on YouTube directly by clicking on the YouTube link and take a look at the info section below the videos.
SEVEN YEARS SINCE MY ACCIDENT – A Reflection With My Husband
A reflective discussion with my husband Matt Hill about the challenges and positives of the past seven years since my ladder fall and development of a spinal CSF leak and arachnoiditis.
Summary of my accident and diagnosis. 1:00 min
1. What’s been one of the hardest parts of the last seven years? 2:18
2. What has been one of the positives of such a difficult journey? 7:00
3. What advice would you give to other spouses/ partners/ family members in this kind of situation? 9:30
MANAGING MY ARACHNOIDITIS – How I Manage My Daily Symptoms
This video is an update on my arachnoiditis/ mild adhesive arachnoiditis (AA) and how I manage to ongoing daily symptoms. I have not had a major flare in over a year but I do have many ongoing daily symptoms I have to micro-manage throughout the day to get the most out of my time.
Here is a breakdown of content you can skip to in video info on YouTube. The numbers signify number of minutes into the video:
0:28 Seven years of arachnoiditis/ mild AA
1:16 Current medication
1:57 Vitamins/ supplements/ diet
2:08 Walking physio
2:32 When people ask: How are you doing?
4:09 What does it feel like to have arachnoiditis/AA/ Spinal CSF Leak (active or in recovery)?
5:18 How did my fall cause arachnoiditis?
6:49 What does the arachnoiditis pain feel like?
9:49 CSF/ Spinal fluid flow issues
11:24 Standing is normally a better position for me
12:46 Higher Intracranial pressure (ICP) issues/ symptoms – common to those with arachnoiditis/ tarlov cysts and post spinal CSF leak
15:02 Problems with focus & concentration
18:33 How about driving a car?
19:07 Do I ever feel normal?
21:09 Do I have fears for the future?
I hope that the videos are helpful to others out there with both spinal CSF leaks / arachnoiditis or any other physical or mental health condition. It really is not at all easy navigating such conditions which is one of the reasons I choose to share my story. As you will see and have read previously, I am very blessed and privileged to have a very supportive husband, family and wider support network in our church and other supportive friends – both around me and online.
I really do believe we need others to make it through the immense challenges of these conditions.
So if you do feel alone today I would really recommend trying to find others to connect to – both around you or online through support groups. There are many groups available via Facebook groups, Twitter and other forums. Please don’t stay isolated if you do need support.
…And please don’t stay silent either.
Talking or writing really can help. Whether you show others or not. I am in a privileged position to be able to share my story publicly – others are not. But I hope that even when you can’t ‘find the words’ that my words might connect with you. So that you know you really are not alone. There are others – some better off and others worse off than you. Across the world many others are trying to find their way through dealing with and managing these conditions and their devastation on our lives.
I am thankful that in 2022 we have the internet to help us find one another so that our collective experience and voice might become even more powerful and increasingly louder – until more people are reached, understood and helped – both medically and holistically. So please do share my story with anyone who might listen – if you think it will help you and the cause in general.
Compassion and advocacy starts with you, and I, telling our stories and hoping that through them others might well be saved some of the additional pain we have had to face. We will then realise more and more that we face these awful illnesses TOGETHERand together we are surely so much stronger than trying to fight alone.
“Sit with hurting people. Offer them your presence. Show them you’re connecting to their pain. Listen to what they need. Weep with them. It won’t make them feel worse; it will make them feel welcomed into communion with you.” – Katherine & Jay Wolf
“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” -Psalms 73:26 NLT
A few weeks ago I decided to do a new video update on my case to mark my progress a year after I was first diagnosed with arachnoiditis, and six months since my last flare, IV steroid treatment and the start of my making videos about my case. It’s taken me a few weeks to then add to this video with this additional expanded update in writing.
Sometimes I feel like it takes ‘an essay’ to give a more substantial picture of how things are. Videos help that as I can add quite detailed explanations. However, writing can also provide a different avenue which allows further explanation and summary of how things really are.
So to start off with I wanted to share my seven minute video update, then I will expand on what I have said in that with a few more details and explanations. https://youtu.be/Qa2RwmwYTDo
As you will see – it’s very good news for me on so many levels.
Compared to how things were last year and especially around the time of the admission that prompted the diagnosis… things are substantially better in so many ways. My symptoms ‘across the board – in my head, spine & legs’ are substantially better and more controlled. I can do between 9-12 hours upright in one go and then more again after that if I lie down for 1-2 hours to rest. I walk around 7-12km a day over 2-3 long walks. My head is clearer, I do not suffer with as much fatigue or so many debilitating headaches. I have been able to travel for holiday and to visit family in the UK (although this in reality remains very hard). I can do and achieve more ‘normal life activities’ than I probably have been able to do since my accident.
When you are chronically ill there are often no simple answers to explain your current experience of life. Yes I usually ‘look well’ at the moment to most outsiders. But ‘looking well’ masks a hidden reality of constantly managing what I do and can’t do. What position/ posture I can stay in, to try and get the ‘best outcome’ of symptom stability.
My daily living is dictated by constant micro & macro self-management decisions & deliberate plans to help my body utilise its abilities rather than constantly be restricted by its disabilities.
I gave up on ‘normal’ a long time ago.
Since my accident (a ladder fall) in January 2015 I have not had one day I have felt ‘normal’ … like I used to before that day I fell. A time without any neurological issues in my head & spine. I cannot even remember what ‘normal’ feels like to be honest. I watch people sitting down comfortably or relaxing on a recliner chair with their head up and think ‘how do you do that?’ It’s just so uncomfortable for me to sit or recline (unless fully flat on my side). So it’s just not relaxing! I have become used to standing, moving around, walking, being quiet, lying down. I have got somewhat used to the unnerving constant pressure and subsequent ‘dreamy/ foggy’ feeling in my head. The constant stiffness, pain, tension and pulling in my spine.
This is my ‘normal’ which is far from normal… And yet I live A LOT closer to ‘normal’ than I probably ever have done in the past six years. I have found ways and means to bring balance, symptom management & utilise my broken body to the best of its capacity.
…And that has been LIBERATING!!
I am doing well for me!
A New Way Of Living
I have found ways of living that generally work with and around my limitations, frustrations and restrictions. It’s often a quieter way of life … a long way from the busy, outgoing, energetic, packed full life I used to live… but full of many things I love and value all the same.
Through accepting my limitations – and not trying to constantly ‘push against them’ I can often find a ‘way to make it work’ … as long as I am realistic about what my body and brain can do.
Understanding and treating the arachnoiditis more has been revolutionary to more physical and mental stability in my life. My body & its many issues are much less of an enigma to me … we have more answers and I have learnt to ‘flow with’ the illness more rather than do things that make things worse.
The Problem With Staying in One Position
For instance… today I am typing this in my iPhone notes… and because I am standing, mainly in one position, with my neck slightly bent & arms raised to hold my phone… the pressure is building in my head, upper neck & lower spine, the pain is increasing behind my eyes, neck & lumbar spine until I start to feel like my head wants to burst, my ears need to pop and sometimes a wave of nausea begins to come. The pins and needles & numbness are also increasing in my legs … so I am feeling that normal ‘arachnoiditis agitation & restlessness’ increasing.
But these days I know the answer to help alleviate these increasing symptoms … it is to walk, to move around. To allow my spinal fluid/ circulation or whatever is hindered to flow again more freely.
Then I can come back to this task later.
I have learnt to accept that my concentration can only remain consistent in one position for so long. But if I learn to do things in shorter bursts – 20mins here – 30 mins there… with breaks to move around and maybe do some simple housework in between…
…then I will get more done.
It works for me because I mix any church admin, preparation or other work or admin in with general housework, standing gardening, cooking, shopping or sorting things to help my body through moving about again at regular intervals.
To some people it might look like anxious or restless behaviour… and I think I could be ‘seen’ like that by others before. But in reality the constant moving about is mainly a biological manifestation to stop the aggravation of increased physical symptoms and pain from staying in one position too long.
Other Symptom Aggravators
I have to manage bending, straining, raising my voice, singing, what I carry, how fast I walk, how long I sit, using the loo, how far I drive or travel as a passenger, fast moving images (even scrolling on my phone or on the computer can make me feel nauseous), loud noise and bright lights etc… all things that exacerbate my symptoms. So need careful management.
Walking is really helpful for my lumbar spine, legs and general fitness but it can at times also flare my head pressure – especially if I walk too fast, try talk a lot when I walk or have to look down because of uneven ground. They can all cause a pressure surge in my head and neck & make the dreamy/ strange equilibrium feelings even more noticeable. However; the benefits of lots of walking greatly outweigh the drawbacks and it has been liberating to be able to do so much more that I could a year a go.
I also have to carefully manage stressful situations or hurrying about. It takes extremely fine balancing to keep myself calm in difficult circumstances. This is because stress, anxiety, a lot of pressure on me or the need to rush are extremely detrimental to my symptom stability. I believe that this is probably a lot to do with the strain it puts on my intracranial pressure system. My normal biological reactions are very hypersensitive compared with your average person.
Things That Improve My Symptoms
Include: Moving around as much as possible, walking a lot – long distances every day – being quiet when needed, resting lying down in the evening, eating healthily at regular intervals, taking medication, planning my day to include all these things in good balance. Symptom management is all about good planning to provide correct breaks from sitting or staying in one position for too long. And good rest lying down later in the evening.
Often by the evening my lower lumbar/ upper sacral spine pain is pretty awful – especially if I have done a lot of standing, sitting or bending. It feels a bit like someone has ‘grated’ or deeply ‘grazed’ the inside of my spine. Like when your flesh is raw – but deep inside me. Although this does always improve after an hour or so lying down in bed or on the sofa.
Spinal CSF Leak Update
At the moment we do not know for sure whether my spinal CSF leak is there permanently, has fully sealed, comes and goes or possibly remains and acts as a stabiliser to my messed up intracranial pressure system. I say this because I do appear to struggle with higher intracranial pressure issues as well as low ones. Which is again typical of people with arachnoiditis & sacral Tarlov Cysts. So I have sometimes wondered whether – IF the leak is still there – whether it could possibly act like a ‘natural shunt’ that helps maintain my pressure surges. Equally, it could be that the leak isn’t permanent and it heals but can return. It really is hard to know. It was last seen on my September 2019 MRIs and I haven’t had a new full spinal MRIs at my CSF leak specialist hospital since then. However, it is clear that when my arachnoiditis symptoms do flare – when I relapse – that my ‘low pressure syndrome’ symptoms get a lot worse again.
We can only theorise as to why this is. I personally think that my CSF flow becomes impeded by the inflammation and nerve clumping because it improves so radically when I have the IV steroids… and, as my neurologist said, IV steroids will not seal a leak. So we know there has to be something else going on. It could also be that the inflammation causes an increase in intracranial pressure which causes me to leak more. But there are many unknowns. A spinal CSF leak has certainly been a big part of my story and probably the initial catalyst for my ongoing issues … but there is perhaps more to the way the whole CSF system is impeded by the arachnoiditis than we yet fully understand.
In my case, I have decided with my neurologist that it’s too risky to pursue any more investigations regarding the spinal CSF leak. Because these would include CT myelograms, epidural blood/ glue patches or surgeries which have the potential to make the arachnoiditis much worse and move it very quickly into much worse adhesive arachnoiditis. So in my case seeing that my typical low ICP symptoms have improved so radically through the use of IV steroids and my ongoing drugs protocol…. in my NHS neurologist’s words … it makes the issue as to whether I currently actually still have a CSF leak or not somewhat ‘academic’. In the end, when I had a CTM in September 2017 – I badly seizured & then after the subsequent high volume lumbar BEBP a week later I was seriously unwell for weeks to months after it. I wouldn’t want to risk that again without a critical reason.
So it is no longer a risk we are willing to take. In my own case it seems that the arachnoiditis is my bigger current problem. And thankfully when we treat the arachnoiditis EVERYTHING else improves.
My update video gives a summary of my current medication but here it is written down:
5mg prednisolone every other day (after 20mg Omeprazole to protect my stomach)
4.5ml LDN (Low dose Naltrexone via private prescription from Dickinson’s Chemist Glasgow) but with the awareness of my GPs and two NHS neurology teams
Iron tablets (Ferrous Sulfate) due to low ferritin levels found after blood tests following hair loss)
Medication sometimes used for symptom flares or for long car journeys/ travelling (as discussed in my video).
2/ 2.5mg diazepam
Turmeric/ Curcumin, B-12 & B complex, Calcium, Magnesium & Vit D, Omega 3. (Disclaimer – I do not really know which help and which don’t. I simply chose them according to my own research and in relation to the meds I take). It’s my whole medication, supplement and walking protocol that helps. I also try and eat a low carb/ low sugar and high protein (inc some meat), dairy, vegetable & fruit diet.)
Halted medication & supplements due to possibly contribution to hair loss as discussed on my video.My hair loss has much improved since coming off these and taking iron tablets.
Pregnenalone (non- prescription supplement)
Arachnoiditis: A relapsing / Remitting illness
As it is very clear if you have followed my story long-term, my illness has always followed a clear relapsing / remitting pattern. This means is that usually around every 4 to 12 months I have an acute relapse of symptoms. This is shown in my case summary video. However, I can then go through months of doing significantly better. This is a normal pattern for people with arachnoiditis and adhesive arachnoiditis.
Since we have learnt to treat these relapses with IV steroids I have found I have recovered from the relapses in comparatively super quick time. In previous years it would take many many very long weeks and months for me to ‘somewhat recover’ from them. My last one (before last summer) was in April 2019 and I never got back to pre-relapse levels until after the diagnosis and treatment in July 2020. Since then I have also been recovering to a much much better level of symptoms stability and a much higher peak in what I can do and achieve than I have probably at any time over the past six years since my accident.
However, this does not mean when the illness is in a season of more remission that I am not unwell.
I am always unwell in one way or another. As I said above … I never feel normal.
I have obvious permanent damage to my lumbar spine (nerve clumping) and to the way my nervous & intercranial pressure systems function. However, what I wanted to demonstrate through these videos is how much better I have been since my diagnosis last summer and new treatment plan.
So for that I remain extremely grateful for all the support I’ve had from both of my NHS neurology teams, other local consultants & my local GP practice. It’s not been easy for them to navigate my illnesses when there is not a lot of up-to-date information on them and they are very unusual (and under diagnosed).
It helps patients immensely when they find doctors who are willing to listen, learn, be open minded and consider new diagnoses regarding their case. Especially when there has been so many unknowns about their constant symptoms over the years.
It is very easy for doctors to start thinking that you have a mainly psychological problem rather than a predominantly physical one when your case is full of unknowns. So to be listened to and believed by doctors AND those around you is one the most healing things to a suffering persons holistic health. One of my greatest underlying fears throughout my journey was to ‘be abandoned by medical professionals’ whilst in my greatest time of distress, pain, symptom severity and need. Mainly due to a lack of knowledge and understanding about my conditions. So to know I am under two great NHS neurology teams is very helpful to me.
I know in some ways I am still at the start of such a very long journey. Despite being 6 1/2 years into it. But over the past year I have felt that new empowerment to face both the past, present and whatever the future may bring in a more holistically healthy & supported way.
None of us knows what tomorrow will bring. But it sure does help when you have an arsenal of ‘medical and holistic weapons’ at your disposal & and a great team of supporters around you – to help you face & navigate the battles the future will inevitably bring.
“… there was no need to be ashamed of tears, for tears bore witness that a man had the greatest of courage, the courage to suffer. Only very few realised that.”
– Viktor Frankl
I pray that I … and you… may continue to have the courage to suffer well & suffer strong. Whatever that may look like long term. The past 6 years have at times been a nightmare to navigate and at my darkest times I was ready to just ‘give up’ on life itself. BUT… I do not feel like that now. So I have said it before and will say again… please never give up… because things can change and they really can get better again! And new answers to long term questions can come in very unexpected ways!!
“Try to understand others. If you understand each other you will be kind to each other.”
Trying to understand others is a big motivating force in my life. I have learnt from experience over the years that the more we can TRY to understand others – and they TRY to understand us – the kinder we will be to one another. Ignorance about others’ lives and what they have had to deal with in the past, or what they currently face now, is often one of the reasons we misunderstand and judge others behaviour and words. Listening and more understanding, on the other hand, is often the key to treating people with more love, grace & compassion in every way.
This is one of the reasons I have tried to tell my own story over the past five years as honestly as I can. To help me to understand and process my own journey. To also help others to understand me. But probably most importantly to try and help others suffering to not feel so alone and misunderstood.
I want to use my writing abilities to be a public voice and advocate for the suffering and oppressed – to help them express and understand the inexpressible within themselves and to help those around them to also understand. Whilst also providing a window to those in the medical profession to help them understand spinal CSF leak patients better.
“Speak up for those who cannot speak for themselves; ensure justice for those being crushed.”
Many doctors have no idea how much damage they can physically and mentally do to their spinal CSF leak patients due to their own misunderstandings and ignorance of the condition. As I wrote about in Dear Doctor, A Letter from your Naked Patient.
My Background Story
In January 2015 I fell off a small step ladder whilst painting and hit my head and spine hard. Although a little dazed and bruised at the time, I generally felt OK. But over the next 48 hours I started to feel more and more unwell until I was left predominately stuck in bed in a dark room (to read more about that see my original Living with a Spinal CSF Leak post or Surviving the Storm post). At first I was diagnosed with a concussion, then post-concussion syndrome. But finally after admission to hospital 8 weeks later with things not improving and in some ways worse (on my third trip to the ED) – I was diagnosed with a spinal CSF leak.
Although my cranial and spinal MRIs were deemed normal at the time, I was diagnosed after 2 weeks of observation on a NHS city hospital neurology ward where it was obvious I only ever felt well lying completely flat. I also had a diagnostic lumbar puncture which was low (7).(Although I would never recommend using LPs to diagnose because of the high risk of a new leak and the fact that about 60% of leak patients will not show low pressure anyway*). I also then had 5 much better months directly following a blind lumbar 30ml epidural blood patch before fully relapsing again that September.
I have now had 4 blind epidural blood patches – all gave me obvious consistent relief for weeks to months. Although never fully and always transient. I have also had countless MRIs, a cisternogram and a CT Myelogram. Although it is only recently that my UK CSF leak team have flagged seeing a suspected leak on my spinal MRIs.
High & Low Pressure Fluctuations
Over the past 5 years I have experienced months of being almost constantly flat in bed and months of being upright all day (following epidural blood patches). But never symptom free and always struggling with hypersensitive reactions to normal pressure changes in my skull. At times after blood patches my symptoms have also typically seemed to shift into a more high pressure pattern of getting worse lying down and better upright. Although those times were also very confusing – as they often are for many spinal CSF leak patients who experience hypersensitive pressure fluctuations. Which can be even more heightened after treatment/ healing.
I have discussed this with a number of people over the years. There is an online support group for patients experiencing symptoms consistent with Rebound High Pressure symptoms and treated for such symptoms.
We were actually recently discussing over Twitter how spinal CSF leak patients both before and after treatment/ healing become experts in ‘micro-managing their ICP (skull pressure) equilibrium’. Bending, carrying, lifting, stretching, straining, going to the loo, shouting, singing, twisting, exertion, opening stiff jars, lifting a full kettle, travelling on bumpy roads, stress & anxiety etc etc all tend to send pressure bursts/ waves into our head. Which when we are leaking, just seem to also make us leak more until it builds and we can no longer maintain a manageable pressure equilibrium in our skulls.
So to manage the condition, I have to ‘micro-manage’ my ICP.For me this means avoiding many of the things I mention above as much as possible or plan them before I lie down to rest. I also ask my family to lift/ carry/ bend for me as much as possible. I use a ‘litter picker’ stick to pick things up off the ground. I often try to delay using the loo until before I know I can lie down where possible. I also stand up most of the time I am upright because sitting makes me worse far quicker for some reason. (Perhaps due to the location of the leak and the stretching of the dura from sitting down.) Keeping my spine completely straight is my key to more upright time. And reducing the ‘pressure busts/ waves’ in my skull which build up to make me progressively worse until I cannot tolerate the symptoms any more.
How it Feels To Have a Spinal CSF leak.
Please note these symptoms are there every day without fail. This pattern is consistent each and every day.
The best way to explain it, is like an ever-increasing overwhelming dull pressure/ intensity in the head. As it gets worse (over minutes to hours depending on how acute the leak is), you feel more and more detached from the world around you. That feels a bit like being drunk/ or using ‘gas and air’ – but accompanied by a heavy, pressure pain. The pressure is in the whole head but I feel it particularly in the occipital area, in my neck and behind my eyes.At its worst it is accompanied by a ‘pulling sensation’ which leaves you feeling like your head is being pulled into your neck. Or that your neck isn’t strong enough to hold your head up. Also many of the nerves around that area hurt more and more.
It just builds and builds until your brain starts shutting down. You can no longer think straight, process well, everything feels impossible, you become disoriented and confused and you can feel very very nauseous and I sometimes even want to gag. Although never actually vomit like some people do.
I also get pain in the bottom of my spine which gets increasingly worse. So I have described to others that it often feels like I have a metal rod going through my spine with a clamp at the bottom of my skull/ top of my neck. And one at the bottom of my spine. The sensation is then like someone is tightening the clamps either end so that my spine is being tightened, shortened and my skull is being pulled into my neck.
I imagine that it’s simply the sensation of your brain ‘sinking/ slumping’ into your skull because of the intracranial hypotension. Caused by the lack of spinal fluid to keep your brain in its cushioned, buoyant place. I think then this causes me to feel tension throughout my spine hence the clamp feeling.
The overriding feeling is…
‘I CANNOT COPE.’
I cannot cope…. with this intensity in my head.
I cannot cope …. with this level of pain & trauma.
I cannot cope …. with thinking and making decisions.
I cannot cope… with attempting to formulate words to explain what is happening.
I cannot cope …. with attempting to function whilst my body and brain feels like it is shutting down.
I cannot cope …. with this impossible illness.
My husband says I become vacant, distant and increasingly slow to respond as it becomes obvious that I am in a bad way.
Those feelings just increase until you feel like…
I CANNOT COPE WITH ANYTHING!!! I MUST LIE DOWN & REST!!!!
You then think about the best quiet place that you can lie down flat in that moment….
Like a drug addict needing their fix….
…. Or a person in perpetual excruciating pain needing a morphine injection.
My ‘morphine’ or ‘drug of choice’ is to lie down.
Morphine itself doesn’t work nor do any other pain killers. ONLY lying down/ resting works. Hence the debilitation.
The Impact of Lying down To Rest
As I lie down flat I feel a wave of relief as, almost instantly, things get easier. It can take anything from seconds to minutes to begin to feel the easing of symptoms. Although if things have got too bad because I have pushed myself too long, gone out for a longer walk or if I have just been on a longer car journey, it can take up to an hour-plus for my symptoms to fully calm to more manageable levels – where I feel more fully relaxed again from the extreme tension and trauma in my brain and body.
But as it does ease, it’s like your head slowly begins to clear. The intensity gradually eases. The ‘clamps’ loosen. The pain begins to dissipate. The brain fog and confusion gets better.
I can finally think and talk more clearly again.
I feel more normal again … although never fully normal. Never how my head used to feel before the accident.
At my worst times – when I was probably leaking most acutely – after being upright too long (sometimes a matter of minutes) I would not even be able to walk or talk properly. My speech would become slurred and incomprehensible. My legs would turn to jelly and I would struggle to walk without holding onto things to pull myself back to bed. And everything would feel like a dream.
My brain would just begin to completely shut down.
Until I would HAVE to lie down, as if being saved from drowning in pain, trauma & confusion… and after 5-10 minutes of lying flat I could think and talk more normally again.
Countless doctors and nurses in hospital over my various stays observed this which helped confirm the diagnosis at that time.
Those were more my classic spinal CSF leak symptoms. My problems with doctors came when those times were extended to hours or even most of the day of being upright. Especially after epidural blood patches. That is when many spinal CSF leak patients fall through the ‘text book diagnosis’ cracks. Into the ‘chronic migraines’ or ‘NDPH’ (New daily persistent headache) or chronic fatigue boxes.
And yet I know hundreds of patients in the UK/ world wide who can be upright most, or even all of the day, with spinal CSF leaks still evidenced on their scans or found in exploratory surgery – proving that it is possible, and actually more common than once thought (as any up-to-date research on the subject will tell you). Some patients with all the symptoms but no scan evidence turn out in exploratory surgery to have a thin membrane covering the leak which stops them fully healing but provides enough covering to not show on scans and give them more upright time. Some of these patients started off leaking through a simple lumbar puncture, but were previously told by doctors that they definitely could not be leaking still, and suggestions made that they ‘spend too much time on Google’ or it is simply ‘all in their head.’ Which regularly pushes very unwell patients into deep despair.
This is part of what makes this condition very difficult to endure.
The fact is that lying down not only helps much of the intense, traumatic pain. But it also helps my focus and ability to concentrate so much. This means that I often opt to lie down to write messages or emails to people, or talk on the phone for extended periods – simply because I can ‘think straight’ lying down – much better than I can upright. Especially if I have been upright for a while.
I normally write most of these blog posts lying down too.
I currently find I have about 1-4 hours upright AT A TIME. Generally more first thing in the morning and if I am well rested. Before things get too unmanageable and I have to lie down again for 1-2 hours to recover. I am then up for a while then down again throughout the day. I have also learnt to generally try and pre-empt when I really need to ‘get flat again’ so it doesn’t get too bad. Otherwise I can’t cope and it takes me longer to recover. Some days – like today – I am more up and down like a yo-yo for shorter time’s to try and avoid longer periods flat and do more writing or things on my phone lying down.
This has actually all been much easier for me in COVID-19 ‘lockdown’ because being at home all day means I can plan my lying down breaks much more easily. It’s extended periods upright outside of the house which are hardest for me.
However, as much as lying down is my ‘painkiller’ of choice. I must tell you that it doesn’t always ‘make all the pain go away’.
We Do Get Pain Lying Down Too
I live with a constant underlying dull head pressure and pain to varying degrees. Since my accident I have never had a fully clear head without any pressure, fogginess or pain at all.
Not one day, not even for one hour.
I imagine that everything is so messed up, inflamed and damaged in my head and spine these days and with my ICP equilibrium. That the pain and feelings of pressure (to differing levels) never really fully leaves. And often if I ‘over do it’ either upright or trying to do too much lying down. (A lot of typing, reading or talking). I can get a different type of headache on top of my normal one. A very painful more frontal headache, combined with a feeling of pressure and nausea. That can really stop me in my tracks for a bit. I actually feel it a bit now as I write this on my iphone whilst lying flat. I imagine it’s partly the exertion of holding my phone, and typing a lot on it. Whilst also concentrating to write. Sometimes normal painkillers can help this additional headache a bit but not always.
That kind of headache makes me feel very sleepy and I yawn a lot to try and release the pressure. If I then get up I often feel my ears popping as if my pressure is trying to equalise again. I still obviously have a lot of problems regulating my skull pressure.
I must also add here that I can also get those ‘pressure bursts’ I mention about being upright – lying down too. If I stretch, move or turn over too quickly, speak too loudly or even ‘pass wind’ (funnily enough – that’s how sensitive my head is!!!) I get a tangible wave of dull pressure and pain into my head. That can also make me feel rather light headed for a few minutes. But it normally eases again lying down if I am still and quiet for a bit – but not always.
The Vicious Cycle of Stress and ICP Regulation
Stress is also a MAJOR problem for spinal CSF leak patients. Due to the natural increases in ICP stress and anxiety brings – it is one of our worst enemies. Which is a major problem when our symptoms and the resulting debilitation are SO stressful, and at times traumatic, to deal with. I fully believe that the 2-3 major mental health crisis’ I have experienced were in seasons of major stress caused by the trauma and exhaustion of dealing with the illness and trying to get medical help long term. As well as experiencing relapses and pressure swings post treatment.
That is when I go from manageable head pain (if I have consistent lying flat breaks). To unmanageable, perpetual, excruciating, persistent head pain.
At that point I had relapsed again and was desperately unwell physically AND mentally. I saw my neurologist in May 2019 and we were rather confused as to whether my symptoms could be high or low pressure related. Due to some features that looked more like high pressure linked to terrible symptoms on a recent flight to Italy on holiday and previously head pressure and pain lying down and in the night/ early morning. Although after an ‘acetazolomide trial’ (a drug used to reduce ICP) made my symptoms doubly worse until I could hardly move, walk or talk upright at all. It became clearer that it was probably another low pressure relapse. And after a few weeks following the full relapse my symptoms fell into a clearer low pressure pattern anyway of symptoms being greatly reduced lying down. (Especially once my sleep was restored & extra Neuro pain helped by medication from the GP – Mirtazapine, Zopiclone & Nortriptiline which was approved my my neurologist.)
These confusions about pressure are very very common as there are so many symptom overlaps between high and low pressure and their differences are often not clear cut. ** They can also have paradoxical symptoms which can confuse many. I know people with low pressure sounding symptoms that turned out to have IIH. It is also possible to have high ICP/ OP readings from intracranial monitoring or LP AND a spinal CSF leak. (I know of many people who have had normal or high pressure readings (one with an OP of 45 and I have heard with someone with over 50) WITH an evidenced spinal CSF leak. So it’s never a simple process to know what is going on.)
Also Rebound Intracranial Hypertension symptoms following treatment – although increasingly documented are often sneered at or laughed at by most neurologists. I was onced asked by a neurology consultant secretary after none of the neurologists in the office had heard of it… “did you see it on google Mrs Hill?” in a sarcastic tone. It’s this kind of experience that just leaves you feeling stupid about the complexity and debilitation of your symptoms. I replied, “Yes you can find it on google – can I send all the links so someone can actually consider it.”
Holistic Calmness to Manage Symptoms
So, regarding all this, and as I have previously written about – holistic calmness is often the key to managing a chronic spinal CSF leak. But calmness is not easy to come by when you deal with the stress of everything I have described above. Calmness for me has to go so much deeper than for the average person to try to maintain enough balance to keep my symptoms under control.
I tried to explain this once to a friend of mine who is also a doctor. My ‘normal ups and downs’ are so exaggerated by this condition that I imagine what to ‘normal people’s’ body and mind might feel like small changes in equilibrium – to me is felt so much more acutely. Hence some doctors will perhaps purely attach such issues to a patients lack of mental and emotional stability, rather than recognising the underlying physical medical problem creating these ‘mental and emotional’ swings and issues.
Mental Health & CSF Leaks
As I have explained again and again to both patients and doctors – You cannot separate the physical and psychological in any medical condition… But especially in this condition. I like to call the combination of the physical and mental in spinal CSF leak patients and during recovery as ‘a big ball of mess!!’ Where it is impossible to know where the physical ends and psychological begins.
You just cannot separate them.
Especially due to the way this condition effects our ICP (head/ skull pressure) and how that then both responds to stress & triggers stress.
When I say: ‘I CAN’T COPE!’ It’s not normally because I cannot cope in my mental health – per se. It’s mainly that I cannot function physically in that moment so then cannot cope any more mentally with the physical trauma of those symptoms either.
Once I lie down for a bit “I CAN COPE” much more.
But anyone will tell you when you are in a lot of pain or feel really really ill physically – you also struggle to cope mentally too. So the more I try and push my body to do what it struggles to do physically, the more pressure that puts on me mentally and emotionally. Causing this vicious circle where the physical and mental simply feed off one another and you can end up in dangerous places psychologically too. This is why many spinal CSF leak patients can have both underlying depression & anxiety AND be prone to major mental heath crisis’ when their body and mind pack in after trying to ‘push through’ for too long. I believe we are massively more at risk of complete physical and mental breakdowns than the normal population.
I never had any mental health issues at all before my accident. All my problems have always been directly linked to my medical condition – as confirmed by both psychiatrists and the counsellor I have seen since.
Why I Share My Story Publicly
So there is more of my current story of battling a spinal fluid leak (and at times more recovery) for 5 1/2 years. This condition is still so often so unrecognised, under-diagnosed and so misunderstood that it causes many patients untold amounts of extra pain and distress.
This is seen again and again and again when you hear the hundreds of stories in the private Facebook UK and International Spinal CSF leaks and recovery support groups. Most patients have a MAJOR battle to be heard and it causes them untold trauma physically & mentally that can effect them well into the future. Even if they can and do more fully recover in the end.
That is one of the reasons I continue to share my story. To be a voice for others struggling – as much as for myself. To try to reach some who are suffering so deeply and feeling so alone and misunderstood. And to help their family, friends and maybe even their doctors understand this condition better.
In my own case – I am still working with my UK NHS specialist neurologist and his intracranial pressure team to try and find a way forward to help me. At the moment this includes considering Digital Subtraction or Dynamic CT Myelograms to try and locate the actual leak site (which is often very complex and hindered by the fact that my last CTM caused me to seizure) or trying a fifth blind epidural blood patch as these have helped a lot in the past.
Although the current pandemic had delayed all that somewhat. And our NHS – although wonderfully free at point of access – is also often very very slow. Particularly for patients needing multiple scans and procedures to help them with long term conditions such and this.
So mostly I have had to learn how to live with this awful condition and find the best life I can within all of the pain and restrictions. And this is where I am immensely thankful that with the help of my amazing husband, family, church family, many friends and the spiritual support from my faith. As well as some wonderfully supportive doctors I have discovered on my journey. I have found a way to live and enjoy life – amidst all of its pain. With God’s help I have found purpose, meaning and hope even amidst so much personal destruction.
So I want to encourage all those reading this today. That even if your life will never return to what it once was. There is still more beauty, joy and meaning to be discovered here and now. It will take a lot of grieving, support and wrestling through the journey. But to find more meaning within it perhaps you could reach out to support someone else, help educate others about CSF leaks, volunteer for one of the CSF Leak charities or find new creative ways to use your skills & expertise to make a difference in our world.
Your Life May Never Look Like How You Once Imagined It
This post is a continuation of my Living With a Spinal CSF Leak post that I wrote 3 years ago. To read more about my spinal csf leak journey then please see the Spinal CSF leak tab in the top menu.
*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 over 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.
**Please also see this other in depth 2018 medical paper about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate diagnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.
Writing to explore what life is about. Amidst its captivating beauty and deepest pain. In the hope that we can learn, grow and be inspired together.