Today's DOAS features some good and bad things and whilst I was excited for my appointment with the private neurologist to get some answers, it's also awful because it's put us back on the waiting game. I'm very thankful to work because I can get access to private healthcare which meant that I could get an appointment with a local neurologist in a private hospital and it was a 2 month wait as opposed to a 9-12 month wait on the NHS.
Before the appointment, I made sure to be documenting all the migraines I've been getting in a small diary as well as jotting all my symptoms in the back because the migraines have completely turned my head to mush and my memory is shocking. I also took one of my best friends with me (one to drive home cause the fatigue was bad and also as emotional support because of anxiety) which helped reassure me cause she could take my mind off it by distracting me with random conversation. Despite being a nurse myself, I got into the appointment, I was shaking like a leaf because I was convinced that he was going to tell me everything was all in my head or tell me I was making it up, fellow spoonie's can understand that fear. Thankfully speaking to him, he told me they're definitely migraines and sound pretty rough despite trying several treatment and lifestyle changes.
Then came the bad news.....
My next step was the injection therapy once a month which he could have prescribed on the day. However, this costs around £400 for one injection for one month and wouldn't be covered by the private health insurance through work because it's an at home treatment. They could also give me this option on the NHS, but there was a 9-12 month wait to be seen by Walton Neuro. My other options were botox into several points in my scalp which had a 9-12 month wait because there was a long list of people waiting and not enough practitioners trained in it to cope with the demands or I had the option of the new tablet that's just become available in the UK that is the same type of drug as the injection but it can be used as a tablet every other day as a preventative treatment or an acute treatment for migraines which sounded great but it was about £20 per tablet so it wasn't any cheaper compared to the injection with the amount of migraines I get. Or I had the option to be referred back to the NHS list for all of the above treatment but it was a 9-12 month waiting list for the first appointment.
Not going to lie, I left feeling very deflated. I don't know why I didn't think my health insurance would cover outpatient medications and unless I suddenly start making more money from blogging, I don't have a spare £400 a month for the next 12 months to cover the injections. My health insurance have said that I do have the option to self-fund the medication whilst waiting for an NHS appointment but again it's the cost that's stopping me. The neurologist was really lovely and did advise me to keep a headache diary for at least 3 months before the NHS appointment and then they'll be able to prescribe medication at the first appointment. Right now it's just making me feel very low in mood and anxious about having my migraines rule my life for the next 12 months!
How have you all been?
Speak to you next time!
