I’d go back to December, turn around and change my own mind …

Hey! Hey!

Welcome back, loyal readers, to the latest installment of Not just a headache, honey. You’re joining me just one calendar month away from today. The 16th June 2025, to be exact, but before we dive into that thrilling climax, let me rewind the tape for you …

Flashback to 16th May …

Still basking in the deafening silence from London’s so-called CSF leak specialist (quotation marks doing some very heavy lifting), I finally received an email. Not from the consultant himself, of course, don’t be absurd, but from a secretary. She bluntly informed me that they had absolutely no referral, no records, and wait for it, no idea who I even was. Which, I must say, is quite the twist for someone who definitely had at least one referral sent (receipts included).

Now, as someone with a solid 12 years experience in the neurologist trenches, this alone was enough for me to mentally cross him off the list. To be honest, I wasn’t exactly jumping at the chance to meet him, and judging by the radio silence, the feeling was mutual.

Desperate times and all that, I then did what any sensible person would do in 2025: I took to google, copy-pasted my medical memoir into an email and sent it to every single specialist listed on the UK CSF Leak Association website.

All 11 of them. Yes, eleven.

What did I include? Oh, just the basics:

• My symptoms (a novella in itself)
• Timeline of onset
• Current neurologist
• Hospital admissions
• All scans/procedures
• Blood patch chronicles
• Treatment outcomes (or lack thereof)
• And of course, a casual mention that my head feels like it’s trying to leave my body and I’d very much like some help. Please.

With the emails fired off, I resumed my daily hobby: lying flat and twiddling my thumbs. Imagine my surprise when, less than an hour later, I received a reply. The reply in question however was definitely a generic response telling me the consultant will triage her cases individually and be back in contact if she feels she can help, so naturally, I assumed it was a polite rejection in disguise. But then… plot twist: about two hours later, an actual appointment offer dropped into my inbox. For 16th June. Yes, an actual confirmed consultation, with a real neurologist, within four weeks. Cue cautious optimism and a suspicious glance toward the headache gods.

Back to 16th June …

Despite my best efforts to keep expectations lower than my blood pressure when I stand up, I couldn’t help but wonder: Could this one be different? To entertain myself (and protect my sanity), I created a bingo card of inevitable appointment moments:

• Cried twice ✅
• Consultant suggested something we’ve already tried ✅
• I complained about my head at least 10 times ✅
• “Migraines” was mentioned ✅
• Symptoms dismissed ❌ (shockingly, not this time!)
• Dad got confused by London transport ✅
• Regretted my outfit ✅
• Public transport delay ✅
• Made an unnecessary purchase ✅
• MDT buzzword dropped ✅
• Got told my case is “complex” ✅
• Dad reiterated his hatred for London ✅
• Ended up in the wrong part of the hospital ✅

Despite ticking off half the card, we made it to the Royal Free Hospital with time to spare. Good thing too, because this place is basically a vertical city. After spending roughly the GDP of a small nation on one hospital shop beverage (London and hospital pricing … what a combo!), we headed to the 12th floor, where the NHS ends and the marble-floored private sector begins. The vibes? Immaculate.

Now, anybody who knows me will know that my gut opinion of someone is VERY rarely WRONG. So, when I say that the minute we met this consultant I felt comfortable, I am not exaggerating!

A change in luck?! …

Despite having been under neurology for 12 years, I had never met a female neurologist, so she was the first. I re-explained my situation and she listened SO attentively. She stopped me frequently to ask further questions and clarify anything I might have missed out. She was interested in everything I had to say and understanding the whole picture. We discussed my OG headache disorder which is treated with Botox and as per my team at Stoke, she displayed an equally enthusiastic reaction to the treatment of this headache disorder due to the rarity of it!

Moving back to the headache in question, she gathered a full understanding of all the admissions, scans, procedures and dead ends we had reached. My favourite thing was the level of empathy that she showed me, the absolute belief she had in everything I was saying, and the understanding of just how difficult this was. She continually reminded me throughout this consultation that I was so courageous and brave for dealing with this condition, let alone dealing with this condition and trying to maintain some sort of functional life.

We went through the usual neurological examination that I have come to memorise perfectly, followed by a very clear demonstration of my extensive hypermobility! Having passed the neurological examination with greater levels of pleased than the hypermobility one, we discussed the extensive impacts being hyper-mobile can have on other organs and she was keen to know if I had received heart scans to check for mitral valve problems (something nobody had ever discussed with me before).

It just kept getting better …

My other favourite thing about this consultation was that she never once made any grand promises, unlike the neurosurgeon had done back in December. Instead, she was completely realistic with me. She asked for 2 months to collate all of my scans that had been done, contact my neurologist at Stoke and the neurosurgeon who had made all the empty promises, and then she would get back to me with a plan. She was insistent that she did not want to put me through any more painful spinal procedures unless it was absolutely necessary because there was an absolute appreciation of how many I had already been subjected to and the trauma that comes with each of them. Instead, she opted to try a medication, which is most frequently prescribed for migraines, in the hope that there may be an outside chance of an improvement of the nausea I was experiencing. She was very clear that it was a long shot, but worth trying in the interim as another option ticked off when it comes to future MDT discussions about my case.

Despite the consultation being supposedly 45 minutes, we were there well over 60 minutes. There was no rush, not sense that she wanted to get rid of me, just as much time as we needed. She finished the appointment by giving me a contact email address and the request that I contact with ANY questions, concerns or anything else I may have.

A true glimmer of hope …

I left feeling for the first time in a very long time hopeful. Whist she hadn’t made any unrealistic (or grand) promises, I had absolute confidence she would follow through on everything she had promised and be back in touch within 2 months, after looking at my scans, with the next steps.

What I didn’t expect, was over the following 4 weeks to receive multiple email communications with advice, encouragement and a general reminder of how brave I am.

To the headache gods: Thank you for finally throwing me a breadcrumb of progress. I’m not asking for a miracle, just maybe one week where I don’t feel like I’ve been hit in the skull by a brick.

And honestly? Only I could end up needing a PowerPoint presentation, a small army of emails, and a full-blown medical CV just to be taken seriously. But hey, anything for a bit of spinal fluid drama.

X O X O,

Your favourite headache!

Next time ~ a series of wholesome moments with some familiar faces

I’d go back to December, turn around and change my own mind ~ Back to December, Taylor Swift, Speak Now