As many of you will know if you read my health updates regularly, I’ve been suffering with chronic migraines for well over a year and a half now.
There’s not one day I don’t wake up without a migraine – some days I may have a dull one which allows me to some what “continue” on with my day whereas others I’ll be left bedbound. The symptoms which come alongside it can be seriously horrible (vomiting, blurred vision, left eye droops, blood shot eyes, blocked nose, tinnitus in both ears, stars/black dots appear in eyes, sensitive to light & noises and the list continues on) and that alone can leave me bedbound for days on end. After trying multiple medications that are given for migraines, nothing has worked.
My neurologist in Brighton decided it was beyond his knowledge therefore, sent me to Queens Hospital in London to meet one of the top neurologist in the UK. After a meeting with him (which I wrote about in my last update), we decided I’d come into the hospital for four days and have some tests done!
MONDAY 5TH AUGUST – DAY ONE:
Honestly, day one was a complete write off. We started our day with a 6am pick up by ambulance transport, in hopes we’d arrive at the hospital for around 9.20am which thankfully we did. Although, my first appointment was a MRI but when we arrived, we was told that my MRI had been cancelled due to the machine breaking earlier that morning. This meant, they had to rearrange it for the Tuesday.
Then, after waiting nearly 8 hours to see my consultant, he arrived and we went over everything. I was meant to be having my first injection on the Monday BUT by the time he arrived to see me, it was far to late so that also was cancelled until the next day.
So after a 10 hour wait at the hospital, I was finally allowed to go home. Therefore, nothing was actually done on the Monday!
TUESDAY 6TH AUGUST – DAY TWO:
Tuesday was a much better day! After arriving to the hospital for 9.00am, I was sent straight downstairs to have my MRI done. This MRI was two and a half hours long (my back was breaking by the time it had finished) and it was picturing my brain, neck and spine to see if there’s anything wrong that could be causing my migraines.
Once I had my MRI which finished around 11.30am, we waited for half hour so that my first injection could be done for 12pm. I believe I’ve mentioned this in my last update but these injections are too test for a rare illness which causes migraines on the left side of the brain (which mine are). One injection is water whereas the other injection is Indomethacin, neither myself or my consultant knew what day I was having what injection into the bottom of my spine, all we knew is that if my headache went away, then it was Hemicrania Continua which is causing my migraines.
After having the injection done, you have to wait around 2 hours under watch of the nurses, in case any symptoms were to occur. Thankfully, none did so we was allowed to go back to the hotel at 2pm. The hotel we’re staying in is called the Cotton Rooms which is right on Oxford Street, so we may or may not have done a bit of retail therapy! Because, why not?
WEDNESDAY 7TH AUGUST – DAY THREE:
Wednesday was a very fast visit to the hospital. We got to the hospital for 11.30am and had my second injection at 12pm. Like I mentioned above, after having the injection, you have to wait around for 2 hours just in case any symptoms occur that you need medical help with. Thankfully, I was fine so we headed back to the hotel around 2pm.
THURSDAY 8TH AUGUST – DAY FOUR:
Thursday was the day I was nervous for… why? I don’t know, it’s a difficult one to explain. I mean, my consultant is lovely but after the years I spent at children’s, every appointment brings me great anxiety.
Firstly, we spoke about the injections which I had received, now as I mentioned above – one was water, the other medication called Indomethacin and we wouldn’t know what was what until this appointment with my consultant (Tuesdays injection was indomethacin). I told him how on the Tuesday, after the first injection I noticed my migraines getting better & by the Wednesday morning the pain had decreased massively and I was feeling some what “normal” again. Unfortunately, by the Thursday morning I woke up feeling dreadful again (it was like the migraine had returned with a-vengeance), this then meant that it wasn’t Hemicrania Continua causing my headaches, which is good as treatment Indomethacin isn’t used on people like myself who have gastro issues as one of the main side effects is stomach bleeding. He mentioned that sometimes the medication can work, but if the migraine had returned after 48 hours, then it meant it hasn’t worked the way it should have.
Which lead to the diagnosis of Chronic Migraines caused by increased pressure and swelling on my brain. Unfortunately, I can’t receive the proper treatment for reducing pressure as I have Arnold Chairi Malformation (where the lower part of the brain pushes down into the spinal canal), meaning no type of lumbar puncture can be done as it can cause more harm then good. If you didn’t know already, the main reason for my increased pressure and swelling is due to a brain infection that occurred back in 2013 called Encephalitis, which was left untreated for 3 years (that’s something I’ll touch on soon, maybe in a YouTube video?) therefore, was left to fester causing damage my brain in multiple ways. Furthermore, we then spoke about the next step in my journey. I’ve been on every single “well known” migraine treatment and none of it has even touched the pain I’m in, therefore it was time to look outside the box. My consultant is one of the top neurologists in the UK, meaning he knows his stuff when it comes to migraines and the best treatment for them! So, he’s decided to put me on a brand new trial drug which only 100 PEOPLE in the UK are currently on (under his care). It’s actually classed as an illegal drug in the UK and can only be licensed by him. It’s a steroid based treatment and although only a small amount of people are on this drug, he’s had brilliant results. The only problem with the drug is that not only does it cause an array of symptoms like: increased hunger, strange dreams, low moods (many of his patients that are on this drug have had to be put on antidepressants also) etc, also it can take up to 7 weeks to get into your system properly and can take 3 months for me to start noticing a difference. This was the hardest part to hear, 3 months may seem like nothing but when your dealing with deliberating/chronic pain it’s a lifetime.
Another unfortunate part about this trial drug, is that I’ve been taken off all my opioid pain medication (I’m still on Gabapentin & Amitriptyline) as they can work against the new trial drug. Admittedly, I’ll do ANYTHING I can to help this medication work and I literally have gone “cold turkey” from Morphine, Zapain & Fentanyl patches. I came off them straight away on the day and haven’t taken a single one since but in turn, I’ve noticed my pain has increased massively. I’m not sleeping at night the way I did beforehand and my joints (especially my neck, back, knees and shoulders), well they are just in agony. I’ve been really struggling with the pain since coming off them but I know, if my migraines get better then it’ll all be worth it. I’m only allowed to take paracetamol but that’s only 3 times a week.
I was a bitter sweet appointment if I’m totally honest. I was praying with everything I had that they’d say it’s a “quick fix” and I wouldn’t be suffering for much longer, but I will be. Of course it’s all part of the journey I’m on and I’m thankful he’s putting me as part of the trial as my feedback will in turn help thousands of people worldwide with similar problems to me. I’ve got to ring my consultant in three months time with a update for him (unless I start to notice any of the symptoms worsening, then I must ring him straight away) and I’ll see him in six months time to see how I’m getting on.
That’s my big’old London update for you all. I didn’t want to put this admission on my normal three monthly Health Updates as I believe this needed its own separate blogpost.
I really hope this gave you a little insight into my life right now and helped you understand what I’m going through a little better. I know I tend to ramble on but I feel like you guys will want to know about this admission and get all the info possible!
I’m SO sorry for the lack of content recently, like I mentioned I’ve been really struggling health / pain wise and it’s been important to put that first for a little while. I needed to take a massive break and just get myself together enough to start writing again. I’m not saying I’m going to be back to post two times a week but I’ll certainly try my hardest to upload as often as possible!
Sending you tons of love and hugs as always,