So it’s officially 2026, but for some reason I’m still battling the same symptoms from before 2016. The only difference being that I’ve put up with them for that long I’ve actually unlocked every possible bonus symptom to accompany the OG ones!
If you’re new here, hey! I’m Lucy. A 28-year-old who has been something of a medical mystery for over 12 years now. For some reason, my body seems to be collecting chronic conditions like they’re Pokemon, and whilst I can think of greater things to be achieving in your 20s, if some good can come from me yapping about my experiences then I’d say that’s a pretty great achievement!
10+ years of symptoms …
You’d think in 10+ years someone somewhere would have at least an inkling of an idea for how to easing my ever-growing collection of symptoms. As I say, you’d think, but if the past 10+ years have taught me anything, it’s never think …
No, I suppose that’s marginally unfair on the NHS who have been kind enough to bless me with a diagnosis for a plethora of long-term conditions. The only problem is these conditions also happen to be dreadfully under-researched, under-funded, and generally misunderstood.
Looking at just the previous 10 years, I’ve collecting records in the following departments:
- Respiratory
- Cardiology
- Ear, nose and throat (ENT)
- General surgery
- Dermatology
- Rheumatology
- Gastroenterology
- Ophthalmology
- Orthopaedics
- Maxillofacial
- Gynaecology
- Neurology
- Neurosurgery
As a competitive person, I want to see this as an achievement, but something tells me this is not a goal teenage me set her sights on! To say my experiences from department to department varied drastically would be an understatement. Despite having medical records thicker than the entire Harry Potter book set, nothing baffled (and continues to baffle) doctors more than my positional headache.
A sick note for 4 weeks …
That’s right, I start 2026 celebrating 2 years of my positional headache. 2 years! I remember very vividly sitting in that outpatient consultation room and being told these words: I’ll give you a sick note for 4 weeks, you may need a bit longer, but we will fix you …
I roll my eyes hard whenever that sentence resurfaces from my long term memory because I never once associated a bit longer with 2 years and still going! Like I’ve said so many times, I’m a medical overachiever!
Joking aside, I am hoping for nothing more than 2026 being the year someone somewhere manages to gain control over the symptoms that are ruining my life. After 2 years of suffering, I’ve almost made peace with the idea of nobody being able to permanently fix my symptoms now in spite of the original promise. Having said that, I certainly have not made peace with the idea of the rest of my life looking like it does now.
Telling someone that these mystery symptoms have lingered for 2 years can trigger one of two responses. Either they will begin to doubt the reality of them, or they’ll question why I’m still going on about them. Every now and then both thoughts cross my own mind, but only momentarily, before I remember the truth. They are real, and I’m still going on about them because they weren’t there before.
So what exactly will be different this year? …
I started 2026 on a mission …
No matter the specialty of the medical professional I’ve seen up to this point, the first question has remained the same, So when can I run again? Probably not the most important question in the grand scheme of my problems, but on a personal level, it is the most important of all. Being able to run again is the single hobby I want to reclaim, and 2026 is the year I am going to do exactly that. It doesn’t have to be far, and it doesn’t have to be fast, but it does have to be a run. I am not asking for a medal, just a pavement and a body that cooperates.
We started the year strong with a blood test to rule out Lyme disease. Don’t ask at what point that condition entered the chat, because frankly, I’m not sure anyone knows, but start as I mean to go on, I suppose?! Since starting this post, the results came back negative, but it was a fun little side quest!
Other than that, the only planned medical appointment for January is my routine three-monthly head jabbing at the headache clinic. As grateful as I am for how successful the injections have been in managing my OG headache disorder, it really bugs me that they don’t work the same miracle on this pesky positional headache. Apparently even modern medicine has its limits, who knew.
The real pivotal moment will be my appointment at the start of February with he who is currently known as the phantom neurologist. If this is the first time you’re reading one of my posts, allow me to explain. Said neurologist, who shall remain unnamed for now, has been almost as difficult to pinpoint as the leak in my spine, which feels less like coincidence and more like a theme. Now, maybe I’ve been corrupted by previous experiences, but despite the frankly unbelievable number of hoops jumped through to secure this appointment, my expectations are pretty, very low. Experience has taught me that hope is expensive and rarely refundable.
In short, this neurologist will single-handedly determine whether there will be any further investigation to try to locate the cause of my low-pressure headache. One could say he’s holding the key to life itself, but then again, let’s not get carried away. It’s just my quality of life, nothing major.
An MCAS side quest …
On the topic of holding the key to life itself, I cannot shake the fact that since being on the cocktail of antihistamines, some of the co-existing symptoms of my positional headache have subsided. It just cannot be a coincidence. Just like it cannot be a coincidence that this is the first winter season ever where I have not ended up in A&E being nebulised for my asthma, or even dosed up to my eyeballs on steroids. Again, the only change to my medication regime is the addition of the antihistamine. Although, this could just have determined what no respiratory consultant seemed to be able to … my asthma is an allergic asthma!
Back to the low pressure headache that has dictated my life for the past 2 years. It’s no secret that the spinal dura is connective tissue, so within it are lots of mast cells. Which raises the question: did the CSF leak trigger a mast cell activation, or has the mast cell activation interacted with the cerebrospinal fluid?
In short, and for anyone who is new to the journey, there was definitely a spontaneous spinal CSF leak. We know this because the first epidural blood patch provided complete relief from the pain. However, the relief it provided was temporary which was why I underwent a second epidural blood patch 3 months after the first. The only difference was this second blood patch did nothing but leave me with debilitating spinal pain. Since this point, nobody has been able to agree on whether I still have a spinal leak or not.
This brings me back to the MCAS symptoms and raises the question of whether the original spinal leak activated or worsened the MCAS which may have been an underlying condition misdiagnosed over the years. If this is the case, appropriately medicating the MCAS could in theory trigger a reduction or remission of the positional headache in the absence of being able to find the leak.
Again, this is all theory and speculation that I have to muster up the courage in order to pitch it to a doctor who will never have met me before.
It’s strange, because now I know about MCAS, it’s so glaringly obvious I have been displaying symptoms since I was 11 years old. That’s 17 years of dismissal and gaslighting. Almost 2 decades. I think after that long I’ve earned the right to some answers and an improvement in my quality of life. The more I think about it, I’d also like to hand deliver a diagnosis letter to every single person who doubted, dismissed or actively gaslit me.
Stay tuned …
So there we have it, a little new year, same symptoms update! Because the thing about chronic illness is that there are no shortcuts and no fast-track answers. Just waiting rooms, crossed fingers, and time that refuse to hurry up, no matter how inconsiderate I deem its refusal to do so is. Progress, when it comes, is rarely linear and almost never on my schedule (again, pretty inconsiderate in my opinion). It’s not a lifestyle built for the impatient, which is unfortunate, because impatience is very much a core pillar of my personality.
And yet, here I am, reluctantly recruited, like a district tribute from the hunger games. Because long-term illness doesn’t care who it picks, how motivated I am (was), or how many good habits I’ve collected along the way. It doesn’t respond to logic, effort, or optimism, and it certainly doesn’t reward persistence in any predictable way …
May your symptoms be believed and your specialists be competent.
Your favourite headache x
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