“Perseverance is rooted in hope. We persevere when we believe that what awaits us is worth the fight.” – Sarah Walton

Sadly, following just over a year with much more ‘stable baseline’ arachnoiditis/ CSF leak symptoms…

I finally succumbed to a new flare.

Another relapse.

And it was again … BAD.

Bad enough that a 10 day course of 40mg prednisolone (oral steroid) hardly touched it….Took the edge off maybe… But certainly couldn’t stop it!

That is the power of my arachnoiditis flares. Once established – they seem untouchable to halt.

… Until we use the IV Methylprednisolone 1g a day x3.

Until we hit the inflammation HARD & FAST.

That’s the only thing that seems to stop it in its tracks and subsequently reverse the relapse process… back into recovery.

I have again documented this flare with a new YouTube video (see below) made post IV treatment. But it includes some footage from the flare itself.

I make these videos to raise awareness, to educate, to continue to tell my story, inform others of my progress and also to process my own trauma.

Because it’s always traumatic.

To feel that abhorrently unwell. To feel so vulnerable and out of control. To be brutally reminded of the nightmare of dozens of previous relapses … and especially the trauma of the memories of the ones from before…

… from before we knew about the central nervous system inflammation. About the Arachnoiditis that seems to have been there from the start.

Hiding in plain sight for many years.

Before we understood – about the arachnoiditis inflammation and the way these flares always seems to take me right back into my acute low pressure/ spinal CSF leak symptoms.

Before we understood ALL that … I just had to endure, hold on and attempt not to deeply despair at the horrendous symptoms in my whole brain, spine, nervous system and whole body. That take me over and force me back to bed. Pretty much all day every day. And back then we didn’t really know how best to treat it. So I would often be like that for months.

It is easier now.

You see I have a ‘plan’.

The support of two great neurologists at two NHS trusts who work together to ensure I get access to the best treatment as fast as we can.

Also the oral prednisolone 40mg DID help! They stopped terrible symptoms getting totally and utterly unbearable with ‘relapse lightening speed’. But it couldn’t stop it. And the day I did stop it to have the IV later on. My symptoms crashed in super quick time.

RELAPSE TRIGGERS

The relapse started after a mix of long car journeys to see family across the U.K. Then on top of that walking into a door frame, bashing my knee HARD and jolting my spine. Thankfully I happened to have a follow up telephone appointment with my CSF leak specialist neurologist the day things really took a turn for the worse – so that really was helpful and another undeniable moment of divine providence I am so grateful for. So he recommended we ask my local Neurologist to arrange the IV. As is the arrangement. As is my medical protocol already established over the past 3 years.

This is my 4th IV in 3 years since I was diagnosed with arachnoiditis. Although in reality it’s always been there since my fall from a ladder in January 2015. That’s what my MRI’s show from March 2015 and that’s the story my symptoms tell me.

It’s always been the same story. From day 1 until now. The same pattern of the initial illness to every relapse ever since. Although my lumbar/ sacral/ leg/ feet/ bladder symptoms have got worse over the years too.

I had the IVs Methylprednisolone 1g Thursday 24th – Saturday 26th August 2023 on GPAU (General Practice Assessment Unit) at my local hospital.

And I am thankful to report that I am now doing a lot better.

It normally takes a couple of weeks to truly get back to ‘my normal baseline’ symptoms. And today as I am writing this we are two weeks post start of the IV. Nearly 4 weeks since this all started. I have just finished the prednisolone taper from 30mg down to 5mg and have just returned to 5mg every other day. Today is my first steroid free day in about 3 1/2 weeks. Although I have taken 75mg diclofenac today to cover me as I try and phase out the steroids back to my normal 5mg every other day. I have also recently returned to my normal 4.5ml of LDN. (Low Dose Naltrexone). (Just to note I also have had to use Zopiclone (sleeping tablet) 7.5mg at night when on higher dose steroids. Although my sleep is now improving again too).

I am finally beginning to feel like ‘my normal’ is pretty much back – give or take a slightly more spacey head at times. But that is also improving each day.

I am back to walking over 10k steps a day and doing lots around the house to keep me moving about. I am also slowly introducing more going out a bit further and will start driving short distances again soon.

So it’s good news.

It came.

It took me down.

We fought back.

We conquered.

I am recovering.

“Endurance is not just the ability to bear a hard thing, but to turn it into glory” – Philip Yancey

For all this I am extremely thankful. To have diagnosis’. (Arachnoiditis & a Spinal CSF leak). To have neurology support at two hospitals. To have a treatment plan that works. To have GP’s who understand.

It all helps so much. The major battles are already fought and won. I have my treatment plan and supportive doctors in my corner. But in reality there are always many small battles along the way. Making lots of calls, sending lots of emails, following up and explaining things again and again. Reminding medical staff I have to lie down as it can’t sit comfortably and can’t be upright at all early on in a flare. Lying down in the car to get to hospital as I cannot tolerate sitting up. Lying down in waiting rooms – hoping for enough chairs together that are free. Otherwise we carry a yoga mat for me to lie on the floor without getting completely dirty. Then there is the chaos at home of me not being able to do things … although even that is easier now my girls are 16 & 18 and can help so much more.

For all the easier things about my story I know I am blessed. I am one of the fortunate ones. Because this level of openminded medical support can be unheard of in the lives of people with suspected or actual arachnoiditis or AA (adhesive arachnoiditis). Still my doctors are all learning with me. But as we learn together the support gets more solid, more understanding. Which really does help counteract the trauma of many years of ‘doctors not understanding’ (as I wrote about so vividly here after counselling.)

So that is why I continue to share my story. I don’t take my privilege for granted: I try to raise awareness. To educate doctors, patients and family and friends. To connect with you in your immense struggle, confusion & despair. To show you ways and treatments that ‘might’ help you too – if you can find the right doctors to help you. To implore you to just keep ‘holding on’ … for years if that’s what it takes (like in my case)… because things can still get better in the end. There is always hope.

Everything I discuss in my videos is based on personal experience, years of symptom observations, plus my own research and listening to others stories. My experiences are unique and thus uniquely managed by my two neurology teams and two different Midlands UK NHS hospitals. So I cannot comment or offer any medical explanations, advice or diagnosis to others. I only share my own story in the hope it may help others on their unique journeys to more answers. I can only answer your questions according to my own limited experiences and the research I have done.

But from what some of you do tell me – sharing my story can help right? Just to know that somebody – somewhere – sometimes across vast oceans ‘gets it’. That they understand your deepest struggle, your most excruciating pain. The daily overwhelming choice to try and keep on finding ways to live despite the constant trauma, questions, confusion, misunderstandings and the deepest of pains.

So today I write to remind you that I really do understand. But these days – more than ever – 8 1/2 years on. I am learning to find a way through it – dare I say – to even THRIVE.

For these reasons my videos and articles are all fully public and can be shared with anyone, by anyone, on any platform. I also write to make translation easier because I know many non-English speakers are keen to follow my story too which is harder with the videos.

So here it is – here is my new video, I have included a content summary below so that people can more easily skip through and find the parts they are interested in.

WHY DO MY LOW PRESSURE / SPINAL CSF LEAK SYMPTOMS GET SO MUCH WORSE DURING MY ARACHNOIDITIS FLARES?

The video documents my recent arachnoiditis flare in August 2023. During this video I also consider the question as to why my low pressure headache/ spinal csf leak symptoms get equally acute during the flare. How does the increase in the inflammation and the physiological mechanisms at play cause me to revert to such distinct Spinal csf leak symptoms? As has always been the case in my medical history over the past 8 1/2 years since a ladder fall in January 2015.

In it I present some theories of my own as to why this happens so radically including:

• I leak more due to higher pressure from inflammation
• I seep more from the adhesive area or via my compromised Dura in that area.
• The inflammation blocks my spinal fluid flow causing radical changes in ICP.
• Or the one I discuss most in this video: that the inflammation pulls at my spinal cord – especially if the more adhesive area is trying to adhere further. Subsequently, bringing an increased ‘tethering sensation’ to my spine. Pulling my brain stem to create that ‘brain sag’ affect – the feeling of ‘my skull being pulled into my neck’. But then also ‘my sacrum being pulled into my lumbar spine’. Could it be that this process then blocks flow too? Causing very real sensation of my spine being tightened and clamped at my neck and sacrum which further supports this theory. Also interestingly I had some people who had previously had surgery for ‘tethered cord syndrome’ comment on one of my ‘bizzare symptoms’ videos telling me that my symptoms sounded like I had a tethered spinal cord. To which I replied – that would make sense if I have AA. Which everything points to me having – at least mildly.

But they are all just ‘theory’ because not enough research has been done. Not enough patients have been studied to really know. Although the more years that go on … the more I realise there is a lot of ‘medicine’ that is about hypotheses and theory. Although then there is the force of science that wants that evidence and proof to back it up.

But I guess that there is a sense in which – I am the evidence. My medical history, scans, test data and response to treatment are all part of ‘the science of my story’. Even if I may be a bit of an anomaly.

Please do comment, reply & let me know if you have any similar experiences – especially if you have both arachnoiditis / AA as well as a spinal CSF leak. Do you find your low pressure / spinal CSF leak symptoms get increasingly more acute when your arachnoiditis is flaring? Do steroids or anti-inflammatories help you too with all your symptoms?

The more we talk and discuss – the stronger our theories can become. So it helps me to hear your stories – as much as your hearing mind hopefully helps you.

• Content Summary so video can be skimmed through.
• 0:12 Relapse Intro
• 1:06 Post flare recap
• 1:52 WHY DO MY SPINAL CSF LEAK/ LOW PRESSURE SYMPTOMS
• GET SO MUCH WORSE DURING MY ARACHNOIDITIS RELAPSES?
• 2:00 Low pressure/ spinal CSF leak symptoms
• 3:48 Explaining my acute low pressure symptoms during relapse
• 5:50 Taking 40mg oral prednisolone (steroid)
• 6:03 My legs are not working properly
• 6:50 Relapse cause/ triggers: car travel then jolting spine
• 11:38 Follow up call with Neurologist
• 13:40 IV Methylprednisolone 1g IV x3 days on GPAU
• 14:40 Do high dose steroids increase ICP?
• 16:40 2 week prednisolone taper from 30mg to 5mg every other day normal dose
• 18:42 Can you relate? Do you get similar symptoms? Please do comment or reply.

Please remember that all videos and articles can be shared with anyone, by anyone, on any platform. As they are all in public realm.

So this is where I say ‘goodbye for now’. I am sorry I don’t update my blogs and videos as much as I used to. But to be honest I often just don’t have the time or energy. I like to do this. I like my story having a wider purpose. But it is also a challenge to achieve amidst even my mildest daily symptoms. So forgive me when I don’t write or make videos for a while. It’s normally because I am just ‘trying to find ways to embrace the life I have.’ And thrive as much as I can within all the restrictions, pain, limitations and debilitation.

But I do want to end by saying…

THANK YOU!

Thank you for listening. Thank you for taking the time to enter into my world for a moment. Thank you for your grace and kindness in bearing with my ponderings, wrestling’s and many questions.

You are appreciated. You are valued. And you are loved.

“When we know we are loved we find it easy to love other people” John Sentamu

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Please do make comments or ask questions on YouTube, here, my social media pages or on Facebook group pages and I will try to reply when I can

For the full summary of my medical history including ladder fall in January 2015, spinal CSF leak diagnosis and footage of my January 2021 arachnoiditis flare see this 5 min video:

ARACHNOIDITIS RESOURCES

‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video https://youtu.be/VGuS1iTuhLo and ‘Arachnoiditis No Longer A Rare Disease’ https://www.practicalpainmanagement.com/pain/spine/adhesive-arachnoiditis-no-longer-rare-disease

Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.com/suspecting-diagnosing-arachnoiditis

IV STEROID TREATMENT PAPERS: Dr J. Antonio Aldrete also co-authored a comprehensive medical book called ‘ARACHNOIDITIS THE EVIDENCE REVEALED’ with a whole chapter (51) dedicated to the study of using IV Methylprednisolone in the acute stages of Arachnoiditis/ Adhesive Arachnoiditis to prevent further progression and damage. Another medical paper supporting the use of steroids in treating early stage arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review https://www.sciencedirect.com/science/article/pii/S2405650221000423?fbclid=IwAR0lAuYagMPknv0pATPQ1dvOt_b0VlIEn6yxJx-DJ9o22EDb45LHJYuH9mg And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania https://www.karger.com/Article/FullText/518379?fbclid=IwAR32EN7tPQD3iKOO9I8bI05ylXvuy-yjLsDyVlmESVJsW63y_j1IqAuFxDo

SPINAL CSF LEAK INFO: 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. Please see this 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.