Hi, I’m really sorry to hear you’re suffering so bad.
I have experience of everything you’ve written of in your post. I’m a 36 yr old male and have been living with severe refractory chronic migraine for the past 10 years. I’ve experienced migraines for most of my life, with my earliest memory being around the age of 7. I went from episodic to chronic around 10 years ago.
Treatment has been a long journey up until this point. I’ve literally exhausted all known migraine preventative medications. During that time I’ve had cranial BOTOX which made me worse than ever. Multiple cranial occipital nerve blocks, which again were ineffective. I’ve trialled Gammacore for 8 months, Cefaly trigeminal nerve stimulator… you name it, I’ve tried it! I’m currently on Venlafaxine as a preventative but it hasn’t stopped the migraines yet.
I also went through a course of prednisone and to answer your question, it didn’t work as a migraine preventative for me. It aided me more in getting me over a really bad spell of severe migraine and sickness. It took a few days to kick in, and did give me a lift in energy once I was over the hump. However, it kept me awake until 3am every night which was counterproductive when you’re a migraineuer! Having experienced it once, I wouldn’t use them again.
If I can offer any advice I would recommend coming off everything, triptan, naproxen, painkillers… I know how this sounds because I was in your position for a very long time! I would take them near enough every day, all together in one big dose, then repeat that up to four times a day. The migraines still didn’t go, they just lasted longer. My life was a misery, it became an existence of getting through each day at work, then going to bed as soon as I got home. Weekends were spent mostly in bed with migraine, then it all started again on Monday. It came to a head when I spent 5 days in hospital after a really bad period. I was initially given morphine and naproxen, which took the edge off it but it only helped me temporarily. I eventually rode it out drug free for the first time under the neurologists orders and it was a horrific experience!
I was advised by my consultant neurologist for many years to stop taking all abortive medication, but I was unwilliang to surrender my life line! Although now I’m pleased to read that you’re also being advised well by your neurologist, the only person who can break the cycle is you, through pure strength and determination! Please don’t get me wrong, it’s a horrendous experience to go through without pain relief, no anti sickness… nothing. However, I subsequently saw my attacks reduced in frequency and length.
This was 18 months ago, and on several occasions since I’ve fallen back into taking too much medicine, but I now know that I can overcome the worst and that through suffering there is the incentive of a few days where I will be well enough to be present in the life of my family.
I still average 2 – 3 severe migraine each week but I’m managing them much better. The worst attacks don’t tend to last any more than 36 hours which is an improvement!
I use triptan and ibuprofen for emergencies, although it never takes it away, more so it only delays it a day or two. I’m able to go to bed when I’m bad, and we have huge support around us from family and friends.
I’ve been off work long term because of the migraines and it’s been life changing for me. I’ve learnt so much about myself. I’ve learnt to accept my disability, but I’m also mourning the person I was and the life that I once lived. I’ve learnt about my faith and I’ve learnt empathy for those who are living with chronic pain. There are days when I get so down and frustrated I become consumed by my self pity. But then I have to remind myself that I’m also extremely privileged to have an amazing, understanding, loving and supportive wife. She is the one who holds it together when I’m incapacitated. She she has also learnt a lot about herself in being patient while we await the miracle cure!
Please know that you are not alone, and my hope for you is that you can take control of your medication and you see an improvement in your quality of life.
There is always a light at the end of the tunnel, it just can’t be seen yet! For me, I do believe CGRP will be a game changer for us, I’m just waiting for it to become available in the UK!
I hope you can be encouraged by my experiences and you’re able to overcome the vicious cycle.