- Migraine medications ineffective for spinal CSF leak
- 3.5 years searching for a diagnosis
- Cause of CSF leak – Venous Fistula
- Rebound Intracranial Hypertension (too much CSF!)
My symptoms started in 2022 when I was in my late 40’s. There was no accident or injury, but suddenly my balance was ‘off’. I’d stand up and feel wobbly, or sit down and nearly miss the chair, which I thought was strange but not too concerning. Then I experienced my first episode of vertigo soon after. I could see the room swaying, like being on a boat. I was unable to stand and had nausea and vomiting. I had a half a dozen of these over a few months, each one progressively worse than the last, ending up being incapacitated for hours afterwards. I’d be completely unable to lift a finger to help myself. The attacks would come on very suddenly and I started being nervous to leave the house alone, worrying that it might happen while I was driving. During this time my ears also started playing up – I had intermittent tinnitus and a feeling of heavy pressure, and nothing I tried would relieve it.
My GP was a bit dismissive initially, telling me I was most likely menopausal and that hormone changes were probably the cause. She did end up referring me to an Ear/Nose/Throat specialist. He could see nothing wrong with my ears but sent me for a hearing check and an MRI, all of which came back clear (It was noted on my MRI that I had low lying tonsils but not deemed significant). He diagnosed me with Vestibular Migraine, a form of migraine that affects the balance and causes dizziness. I’d never heard of it and told him I didn’t get migraines. He said I’d need to see a neurologist if it got worse as it wasn’t his field, but suggested TMJ therapy with a physiotherapist.
By the time I got in to see the physio the vertigo had pretty much stopped by itself. A few months later I started getting the odd migraine. Preventative medication was suggested but I was reluctant to be on daily medication for something that happened once or twice a month. I saw an osteotherapist for a few months but I didn’t notice any real difference and some days I actually felt worse after my session.
I gradually became very headachy. I would usually wake up feeling okay, but as the day went on a headache would start at some point. I remember feeling that sleep was like hitting the reset button. The migraines also started increasing, and my ability to work was beginning to suffer, as I often needed to leave early. I would describe the pain as feeling a heavy weight on the top of my head, or at the base of my skull. My head often hurt mainly when I moved it, so I spent a lot of time at home lying on the couch trying to keep it still. I also developed tender spots on my scalp that hurt to touch. I was becoming increasingly reliant on triptans by this point, so I gave in and took a preventative (Propranolol) for the next four months, which did little to help.
Next on the list was the Acupuncturist/Naturopath. I took various vitamins and supplements, and went on a low histamine diet in case I was experiencing some kind of food allergy. Also tried some hormone supplements, in case they were the issue. Frustratingly, none of it made any difference.
Feeling at my wits end, and having tried every natural therapy I could think of, I booked in to see a Neurologist at the start of 2024. He booked another MRI which didn’t show any changes since the last one. He agreed it was most likely hormonal, and that things should resolve themselves over time, we just had to find a medication that would reduce the migraines in the meantime. So then the medication trials started. He tried a couple more preventatives which actually made me feel worse. This was followed by injections of Ajovy for 3 months, and then 6 months worth of Botox. These did nothing to relieve the symptoms, which were still progressively getting worse.
By this stage I was waking every morning feeling utterly exhausted and experiencing very bad brain fog. I honestly thought I was developing some kind of early dementia as I was so forgetful and struggling to recall details and names. The random vertigo attacks had come back, and one did happen as I was driving. Luckily I was in a shopping centre car park, so managed to pull over as it was hitting. I sat in my car for two hours waiting for it to subside, when it didn’t my partner had to leave work early to come and get me. My balance, which had not been great since the start, was getting worse as the time went on. I was struggling to walk a straight line, I joked that I needed a wheel alignment as I was pulling to the left.
I had already dropped some hours at work as I wasn’t coping, and taking leave whenever I could. My shifts were generally quite early ones, but by midday my pain was so bad I often had to leave. I took over the counter painkillers every day, and triptans at the maximum of 10 a month. There were often days where I didn’t feel I could safely drive home due to the pain and fatigue. I would have a sleep in my car before I felt I could attempt it, and there were days I had to call my partner or daughter to come and pick me up. My weekends were spent resting, my social life was non existent, and I really felt like I couldn’t commit to anything because I just didn’t know if I would be well enough on the day.
Just before Christmas 2024, my neurologist referred me for my third MRI, this time with contrast. It clearly showed inflammation and brain sagging. My diagnosis was Spontaneous Intracranial Hypotension, I had a CSF leak. And better yet, there was a surgery that would fix it! I can’t explain the relief I felt that I might be migraine free. From there things moved very quickly. I was put in touch with the Interventional Radiology team at Monash Clayton in Melbourne and after two CT scans of my spine, the leak was found at T8. The scans showed cysts, one of which had breached the dura and connected with a vein. All that pain from one simple little cyst!
I had my surgery in March 2025, an embolisation of a venous fistula. The surgeons went through my upper arm and glued the leak site. All went well and I was expecting to spend one night in hospital for observation, but I ended up spending three nights. My body was used to over producing fluid to compensate for the leak, and I ended up with a high pressure problem instead of a low pressure one. I was in excruciating pain behind my eyes, and couldn’t stop vomiting. It only lasted for a couple of days luckily, and I was able to go home on the fourth day. The first couple of weeks were rough to be honest, but every week I have felt better and better. I have not taken any migraine medication for a couple of months now. I am still experiencing headaches but only taking paracetamol occasionally. My energy levels have improved and I am back to doing the things I enjoy. I really feel that I have my old life back.
I don’t know what I would have done without my loving and supportive family. Our household schedule really went out the window, with everyone else having to pick up what I couldn’t do. I’d very often fall asleep within minutes of being home from work, my partner having to make the dinner and all the other little chores that I just wasn’t up to doing. He never complained, he was just very worried about me, and I’m very grateful for him. I’m also so grateful for the care the team at Monash have taken of me. Nobody I’ve spoken to has ever heard of this condition and it shouldn’t have taken three and a half years for my diagnosis. I hope that more people become aware of this condition and that my story can help in some small way to make that happen.
