Hi everyone!
Hope you’re all doing as well as can be, wherever you are on your basilar journey?!
So I’m now 10 months into my diagnosis of Basilar Migraines with Prolonged Silent Auras, I was basically in a constant migraine/aura state 24/7, and had been that way but getting worse since July 2021.
I have always had what I call my “normal” migraines, since I was 6 years old, and as I got older they found it was mainly hormone related and I found being on the depot injection really helped control them.
Then July 2021 I started to develop a new sort of headache, left sided mainly to the back of my head behind my ear, a sucking sensation behind my left eye, my pupil would dilate on my left eye, my neck would be stiff, my temperature control would go crazy, but I wouldn’t be light sensitive or have any sickness. I started to get this daily and thought it was the stress of working long, intense hours during covid with me being a nurse (to this day I’ve luckily never had covid, as at one point someone said to me it sounded like my symptoms sounded like long covid).
At the end of July and a couple of visits to A&E (whilst in my sisters uniform) where they told me it was just my normal migraine and to have some painkillers, I managed to get in with a GP who arranged a CT Scan.
CT Scan was done middle of August, I’d also been referred to a Neurologist (in my trust) who again I attended to appointment in my uniform who told me she hadn’t seen the CT Scan results yet but it was just my migraines and it will settle down.
On 9th September I got a phone call from my GP surgery whilst I was doing my clinic, I took the call and was informed that I had a paraopthalmic brain aneurysm and I was being referred to the QE hospital. I then went off sick for 6 months.
During this 6 month period, I waited, and waited, another CT Scan was done, and I waited some more. Then a consultant called me and we decided that I would need an angiogram and from there we’d decide what surgery I’d need to sort the aneurysm out. Then I waited some more.
In the meantime my GP started me on Topiramate 100mg OD and this helped the migraines ease.
I then returned to work in the February on phased return and eventually back full time. Then the 29th of November happened (I still hadn’t heard anything by this point) I have never felt so poorly as I did that day, my head felt like it was going to suck in my left eye, I felt like I was on a boat in an extreme storm swaying side to side, I would go from fever hot to stone cold and vary like that all day, my vision went, then came back, I was blurred out of my left eye if I looked to the left or down, my manager had to drive me home, and I was bed bound for 3 days when I was then taken to my GP who expedited I be seen by the QE immediately for the angiogram. I was off work again sick.
By this time my symptoms weren’t just constant migraines, on top of this I found my memory was impaired, my word finding difficult, pains in my limbs and muscles, numbness in my hands, burning pins and needles in my feet, balance gone, incontinence in bladder, extreme lethargy, blurred vision in my left eye and more.
13th December I went to the QE and had the angiogram, and was told ohh there’s no aneurysm, we’ll arrange for you to be referred to a neurologist, and that was it discharged home, we’ll be in touch.
I saw the neurologist on 21st April 2022!! And I only got all of this, this “quickly” because of 4 letters to PALs, my last basically stating my anxiety and depression were at rock bottom due to my poor physical condition at 34, at that point I honestly thought I had MS with the symptoms I had and with my medical background, and I had given up on life. Miraculously when you tell this, an appointment that they tell you after 18 months of already waiting, you will probably have to wait 10 more weeks for suddenly becomes available, and it shouldn’t be that way.
It was worth it, 21st April, I have my Neurology appointment, we go through everything, all my symptoms from beginning to end, he listened, he took the time, and that’s when he diagnosed me with Basilar Migraine with Prolonged Aura and probable FND, and that unfortunately I had just been in this constant state for all that time.
He increased my Topiramate to 100mg BD (twice daily) for the migraine itself, and then started me on Amitriptyline 10mg OD which I could slowly increase anywhere up to 75mg OD to control all my other symptoms, as this would stop my brain stem sending out the signals to my nerves (as it was apparently overstimulated and sending out signals constantly, hence the symptoms I was experiencing). I have slowly increased the dose to suit, and I have had to go as high as 70mg OD, but with this I do now have a good and fairly normal life again. The symptoms are pretty much in control, I sometimes have the off numb hand episode or ”burny foot” episode as I would call it, but trust me once in a while compared to 5-7 times a day is a massive win.
On top of my medication, I was (before I was put on the extra Topiramate and Amitriptyline) and still am now, lucky enough to have access to a Cryotherapy chamber. My partner runs a Cryotherapy centre where he has an electric Cryotherapy Whole Body chamber, this became my saviour while I was off sick and was waiting to be seen and sorted, on the 4 days he was open a week, I would go in that chamber and for 6 minutes with whatever music I chose, I would escape the world for a bit, and afterwards my aches and pains would ease for a day. Now I’m back at work I only get to use it on a Saturday when I’m not working (I’m a community nurse so mainly work Monday - Friday), and it’s amazing how much I miss it, not just for my physical improvement but for the mental health side too.
Anyhow, don’t get me wrong, my memory is still not 100%, and some days my word finding is more difficult than others, which is my biggest frustration, as I was always such a quick thinker and had such a great memory, but if that is what I have to deal with compared to what I used to have to deal with this time last year when I had given up hope, I will take it.
I’m now back at work as of June, full time, doing my normal duties, and as I say life is fairly normal apart from the fact I’m tired all the time which I think is part being human, part my condition, and part I’m on so many damn sedatives! Lol!
But I wanted to share my story, so that for anyone else going through this, you can look and see that things can get better, we may not all have the same symptoms, it can effect us all differently, and different medications work different for people, but if some of the things I mention here can help, whether it be a bit of optimism hope it gets better, ideas to try new medications or holistic therapies, then it was worth it.
Take care and look after yourselves
Kirsty ❤️
xxx
