In this new blog post I want to introduce you to two of my videos, made in the past year, that attempt to describe some of my stranger or more ‘bizarre’ symptoms and how I manage them. The videos mention 12 symptoms each. So I have titled this blog post ’24 bizarre symptoms’ although there is certainly some overlap in some of the ones mentioned. This is by no means a definitive list – simply an attempt to list around 12 at a time to try and connect with others suffering and raise more awareness of these conditions.
Some of the symptoms are also more ‘bizarre’ than others.
Although they are all my normality.
I have been diagnosed with arachnoiditis (mildly adhesive) and a spinal CSF leak. I continue under the care of two UK NHS neurologists at two midlands NHS hospitals. They work together to oversee my care and my ongoing treatment with oral and IV steroids as talked about in previous articles.
People with spinal CSF leaks, arachnoiditis, AA (adhesive arachnoiditis), tarlov cysts and other similar conditions regularly comment on my videos on YouTube or via my social media posts on the videos. When people have watched these two symptom videos, they often express that they experience all these symptoms, or many of them, and appreciate me trying to explain what they often find so hard to put into words.
That is the privilege of being something of a public communicator and having the ability and capacity to both write and make videos. I have thus found an opportunity to be a public voice for people who often feel like they have no, or a very little, voice.
It actually also encourages me when people comment or reply because we can then share those ‘me too’ moments. There is always a deeper community discovered in the mutual understanding and experience.
We feel less alone when we meet others like us.
I am also well aware that I am in the very privileged position of currently not being so severe as others symptomatically. I regularly hear from people who are mainly stuck in bed or who can hardly walk at all – due to a leak or AA. I never take for granted how functional I currently am – when not in a flare/ relapse. However, I have also certainly known debilitation that has left me bedridden for months at a time. I have also known excruciating 24/7 pain – not only when upright – but all day and all night due to the arachnoiditis flaring on top of a leak and ongoing CSF pressure and flow issues.
So although my case may currently seem comparatively mild compared to others who can only dream of being upright most of the day or walk 10k steps each day. I have certainly tasted of much worse than this, and still occasionally end up back there when I do flare/ relapse. And who knows where things will progress in the future…
… and in that regard I have to train my mind not to dwell on the fears of the unseen and the unknowns of the future. There is always hope – and we never know what medical breakthroughs might one day arise.
“Today is mine. Tomorrow is none of my business. If I peer anxiously into the fog of the future, I will strain my spiritual eyes so that I will not see clearly what is required of me now.”– Elisabeth Elliott
I do remain exceedingly grateful that we have found a way to manage and treat the arachnoiditis, in particular, that has improved my quality of life so much and also is hopefully stopping a much quicker progression into more severe AA.
So I again write this article with compassion, empathy, love and gratitude. For where I am at – and the privileged position I am in – yet also mindful of the even worse acute pain some of you are living with each and every day. I do understand and relate in so many ways. Even when our stories might be quite different.
These symptom lists should show – although I am comparatively functional – I am still immensely restricted. Nearly every part of my life is impacted by the need to manage this condition – to stop the pain, immense challenges and restrictions overwhelming me.
There is a sense in which this ‘symptom profile’ is just my daily normality. You really do just get used to it to a certain extent! However, sometimes voicing and listing them can also be liberating, in allowing my mind to recognise the immense difficulties in living this way.
Even typing this at the moment on the laptop is an endurance test…
My lumber pain is building to intolerable levels, as is my neck pain. The metaphoric clamp in my neck and sacrum is being tightened, my spine feels so ridiculously tense and pulled. My legs are getting increasingly tingly and feel weird. I am becoming more and more aware of the discomfort of my feet touching the ground (as it is still slightly easier to use the laptop standing). My head is getting increasingly full, and the tension from my neck is extending to a band like tension behind my eyes. My eyes hurt, my concentration is beginning to fail as my head feels fuller – and reality becomes more cloudy, hazy and distant. My body is also feeling increasingly overwhelmingly hot as I try and push through another sentence or two.
And I have only been standing here typing for about 20- 30 mins max.
That’s how restrictive this is. Gone are the days of working on a computer all day or sitting down for extended times to work.
That is no longer possible for me.
So for now I will have to step back from this for a time, to move around, go for a walk… anything but endure the pain, distress and nausea I am subjecting my body to in pushing through to write for 20- 30mins.
So bye in this moment… I will be back again soon.
So 40 mins on since I wrote the above – I have moved around more again and went out for a 20-30min walk. As I left the house my head was so full and things felt more distant and intense. As I walked I felt really sleepy and was constantly yawning for about the first 10 mins and my ears, crackled and popped as my pressure attempted to equalise more. It never fully does – my head is always full of pressure to a certain extent – but after about 10-15mins I found I was yawning less and focused on walking more.
To be honest – many of my long daily walks are like taking medicine or doing physio. They are a need rather than always enjoyable. Something that needs to happen – even when much of my body would probably prefer to lie down in bed or lie on the sofa and watch TV. But I have learnt that walking is better for my body, mind and symptom management. The reality is that I could probably relax at first lying down … but the longer I do so, the more likely I will get an awful headache lying down too. Especially if I try and do anything like write on my phone, read or edit videos.
It’s the vicious circle. The constant need to change position. To move about as much as I can.
So for me – earlier in the day – the more walking the better. Because later on – I will probably just not have the energy any more. And walking when it’s dark (especially in the winter) is never so good.
It’s a challenging life. But one which I try and make the best of.
Some days I do love to walk. I am so grateful to still have that ability and for the nature, trees, sky, beauty and for those moments alone to think, pray or listen or to talk with a friend or loved one.
Other days I only do so because I know I must.
Like taking a horrible medicine or exercising when you would rather be in bed.
Because I do know it helps me – a lot. And one of my greatest desires is to help myself manage all this as much as I can.
But it IS exhausting living like this.
But so much better than the alternative – the days of being housebound and stuck in bed.
So I must remember to stay grateful for each and every step and the freedom they bring.
So there again is a written glimpse into some of the challenges I face each and every day. However, for now the time has come to move from written – to spoken words. To share my two videos on some of the multitudes of symptoms I experience daily.
What is caused directly by the arachnoiditis/ AA, what is a small leak still there, CSF flow issues or CSF pressure issues. I cannot always say for sure.
We ‘chronically ill’ spend much time deliberating, analysing and wondering what causes each and every symptom. Sometimes, over time, the picture becomes clearer – albeit still somewhat muddled.
This is my own unique experience and interpretation of the strange sensations in my broken body.
But I must add a disclaimer…
‘Who really knows’ what is what or why and which is from what?
Does it always truly matter anyway?
I have come to see and learn that this is a big part of medicine itself – hypothesis, analysis, deliberation & discovery. Sometimes the evidence does provide an explanation. Sometimes we are left with only theory and wonderings. Especially in conditions that are poorly understood, recognised or researched – like mine are.
VIDEO 1: APRIL 2022 -12 BIZARRE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS – Including my Covid and holiday flight experiences
In this video I discuss twelve of my most prominent – but bizarre – daily symptoms. I also seem to suffer with some high intracranial pressure issues these days as well as possible low pressure – but it’s confusing as to which is which and after 8 years of suffering since my accident (a ladder fall). So all I am really clear on – is that my whole intracranial pressure system is completely dysfunctional and unbalanced in many ways.
I also update on my case including: Having Covid in March 2022 and flying to Mallorca (2 1/2 hr flight) for a family holiday in April 2022.
Video content Summary:
- 1:40 – Having Covid March 2022
- 4:23 – Family holiday to Mallorca Spain including flight
- 7:50 – 1.I have felt drunk for seven years
- 9:19 – 2.I usually feel weird: pressure & pain
- 10:48 – 3.Stiffness, stuckness & pulling sensation in my spine (11:48 Tarlov Cysts)
- 12:09 – 4.Sitting down aggravates all my symptoms & legs go numb
- 14:17 – 5.When I sit I am better leaning forward on hard chairs or with a wedge cushion
- 16:50 – 6.Standing in one position too long makes me feel really ill
- 18:25 – 7.I constantly feel compelled to move around
- 20:35 – 8.I get headaches & feel groggy in the nights & in the morning
- 22:09 – 9.My skin often has crawling pins & needles sensation
- 24:00 – 10.Going for a wee makes my head worse
- 25:54 – 11.My head is very hypersensitive to any ICP (Intracranial Pressure) changes
- 27:52 -12.My eyes & brain are supersensitive to lights & moving images
VIDEO 2: FEBRUARY 2023 – 12 MORE BIZARRE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS: Including a case update
In this video I discuss twelve more of my most prominent – but bizarre – daily symptoms.
Video content Summary (sorry some of the numbers got mixed up):
- 2:58 – Case Update
- 5:12 – Current Meds
- 6:14 – Walking still helps
- 7:56 – 12 More Bizarre Symptoms intro
- 8:32 – 1. Hypersensitivity to stress & intense emotion
- 11:10 – 2.Feeling like I have a clamped steel rod in my spine
- 12:16 – 3.Stiffness & pulling in my neck
- 13:46 – 5.Crouching really flares my symptoms
- 16:49 – 6 Speed bumps make me feel really ill
- 18:32 – (4)Moving images makes me feel really sick
- 19:20 – 7.Hypersensitivity to noise
- 20:33 – 8.My ears regularly crackle & pop
- 21:52 – 9.Bladder urgency & retention
- 23:20 – 11.Have to carry bags into me
- 25:14 -12.Lie on my side with pillows
- 26:00 – (10)Log roll in and out of bed to protect spine
So there is another 24 of my strange – often bizarre – symptoms. Most of which have always been there the whole 8 years. Others which have developed or at least worsened over those years. It is by no means an exhaustive list. So maybe sometime I will add some more…
For instance I could mention how the sensation / neuropathy issues in my feet have gotten somewhat worse. How I can no longer tolerate walking bare foot or with just socks on around the house. How the sensation is both impaired yet also gives me differing levels of pain & discomfort. Or I could tell you about having to choose what I wear carefully. How certain clothes, fabrics or styles are hard to tolerate on my hypersensitive skin these days. Or finally I could lament the fact that my body is often hypersensitive to pain and touch. This gets acute in a flare – but to a certain extent it’s constantly there.
But for now 24 is more than enough to welcome you into my daily world.
And I will finish by asking – what about you?
Some of you have already responded and commented and I appreciate that so very much. I am always very willing to listen and learn from your own experiences too. Can you relate to my descriptions – even if your case is worse – or even milder than mine? Please do comment or reply so that we can all continue to learn together.
For together always has more strength than standing and speaking alone.
Even the weak become strong when they are united.– Friedrich von Schiller
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
‘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
The Arachnoiditis Syndrome – Dr Sarah Smith UK https://arachnoiditis.co.uk/index.php/information/medical-papers-2/124-the-arachnoiditis-syndrome-dr-sarah-smith
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
2 thoughts on “24 BIZZARE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS”
I’m not able to walk around my neighborhood anymore. I can go about 1-2 houses up and back but no further because I get so exhausted and I’m very weak lately. Also my muscles (arms and legs) feel so tight like rocks when I do move around. But I have every single symptom you have described. It’s strange to read it cause it feels like you took the symptoms right out of my mouth. You are just so much better at explaining how it feels. I have a very hard time explaining what I mean and am feeling. My right arm is numb tingly with my thumb, index and middle fingers as well. The right side of my body is more numb tingly excruciating pain/pain and the left side isn’t as numb as the right side but the pain hurts more probably because it’s not so much numbing electricity excruciating pain. My mother and husband call me a shark obviously cause I’m in constant motion, staying still drives me nuts. My ligaments feel like they’re being pulled out of my heals every single night I lay down for bed. I sleep with literally ten pillows all around me and I try my best to lay as flat as I can with 3-4 underneath my legs stacked up and by the time I wake up (which I’m lucky to have slept 4 hours straight) I have 1-2 underneath my legs if I didn’t roll from one side to the other. My eye sight has gotten a little bit worse. I have more headaches lately too. I have lost over 100lbs and I feel as if it has made my pain much worse. I twitch alot more also. Almost like when you’re about to fall asleep and it feels like ya fell off a cliff or that feeling ya get when ya get off of an elevator that jump feeling inside your body type twitching. Thank you so much for your posts and videos. I really feel like you completely understand me.
I am so sorry to hear about how much you are suffering. It must be extremely hard to live with those levels of pain and restriction. I can totally relate to that ‘twitching’ you talk about. I mainly get that in a flare/ relapse but can relate to your description. Also when in a relapse I can get a similar feeling when my body constantly wakes when trying to fall asleep in a similar way.
It really is so hard when you can’t walk or get comfortable at night. But pillows do help a lot a night – although they can do often shift whilst asleep.
Thank you for your comment. It helps me and will help others too. There is much we gain in feeling more understood in shared experience.
Take care & much love!