This blog post has taken me a little while to write and reflect on the crazy events of late November and December.
I have been on Topiramate as a preventative since 2016. I have had all the classic side effects tingling hands and toes. As well as word finding difficulty and memory loss. Due to these side effects my dose has been up and down titrated for years to manage the side effects versus the beneficial preventative effect I was getting at some stages.
I listened to the migraine world summit last year and found out that in the UK they had changed the guidelines to stop giving anyone of childbearing age topiramate due to the significant risk of birth defects. I always knew that topiramate caused birth defects but from this point on I felt that this drug just wasn’t right for me.
I discussed it with my neurologist but unfortunately as I couldn’t afford to go on Aimovig privately and the CGRP inhibitor drugs were not available on trials yet I didn’t have a viable option to switch off it too. I had also just changed my venlafexine to duloxetine to see if that would manage the pain better. I couldn’t help though having this nagging feeling that I wasn’t happy being on the topirmate still.
My next neurology appointment I was signed up for the Ajovy PFP trial and we talked about how if after a couple a months it was going well I could start weaning down on the topamax. I was happy to finally have a plan to get this nuisance of a drug out of my life.
Later that evening when trying to go to bed I suddenly a experienced sharp and extremely painful sensation in my back and groin. I could not get comfortable. I was rolling around in pain and crying. The home gp was all booked out so we called the healthline and talked a nurse and a doctor called back. They thought it was probably muscle pain but if it is still severe to get checked by gp tomorrow to rule out kidney stones.
Now I knew Topiramate could cause kidney stones but surely I couldn’t be that unlucky to get almost all the side effects.
I was able to sleep for a few hours after dosing myself up with some pain killers and convinced myself it was muscular. I reassured my husband he should still leave for his out of state conference and that I likely just pulled something.
A couple of hours later that pain became unbearable, my normal GP was closed so I got an uber to a walk in clinic. I sat there waiting in pain and when they saw me they took down my history and then wrote a referral letter to the nearest hospital and said you need to go to the Emergency department.
So after hours in the emergency department I was diagnosed with kidney stones and sent home with some pain relief and antibiotics and told to try and pass the stones and keep up my fluids.
The next day I pretty much spent it on the couch and watched harry potter movies. I had no appetite and by the evening I was vomitting up whatever I took in even fluids.
I called the health advice line the next morning and the told me I needed to present back to hospital as soon as possible. I was so stressed as my husband was still away and I was worried about our dog bob. Luckily we have wonderful neighbours who happily fed and looked after him for me.
So back to hospital I went and this time I got an Ultrasound which showed that the kidney stone was obstructing. Then all of sudden surgery was being thrown around. I was admitted and had a urology consult.
The call to my husband that night to update him was so hard as I felt so guilty. I had already deprived him of so many opportunities due to my chronic migraines or interrupted his plans and to do it again because of a side effect of a medication for my migraines which I no longer wanted to be on was heart breaking.
So he was going to try and get whatever flight out he could the next day as I didn’t have a time for my surgery. In the end I was able to call him just before I left for theatre and he hopped on his plane so that is probably the best it could have been.
So I had my operation which I found out would be one of two to put in a stent to allow relieve the obstruction.
What followed this operation was two weeks of pain and discomfort as well as rebound Migraine attacks being triggered by the amount of pain killers I was taking for my renal pain.
So two weeks later I had my second surgery and I went to sleep not knowing if they would be able to remove the stent or have to put another one in. Thankfully they were able to successfuly blast the stone and retrieve it and I was able to have the stent removed.
I just immediately felt so much better the pain and discomfort was almost gone. So much so that the day after I was discharged from the hospital I went shopping and out about doing lots of things only to feel awful the next day. I had forgotten that I just had surgery as I was finally feeling so much better. With feeling so much better I didn’t need to take strong pain killers but unfortunately the migraine attacks still continued from using all the pain medication.
I emailed my neurologist as soon as I got out of hospital asking for a plan to wean off topirmate as I had had enough. A couple of days later he called and I commenced the plan.
I took my first dose of Ajovy and started slowly decreasing the topirmate until I was finally free of the drug being in my system.
What I have learnt from the very difficult situation is the importance of Migraine disorder specific medications that have been designed for the that purpose. While all medications have side effects the more tailored treatments we are able to achieve the better the outcome and hopefully less serious side effects. This is why I shall keep advocating for medication like Ajovy and Aimovig and all the new CGRP class to become affordable and available to all who require it. Safe healthcare is a right not a privilege for those that can afford.
Thank you for reading