My story, would love hope and optimism

I’ve had a VM dx since 2021 when I had sudden onset dizziness for 6 weeks, but it was a minor attack that remitted and I’ve only had migraines triggered by hormones since then. I’m on HRT and was doing great until Dec.

In Nov 2022 I slightly hurt my back. I fully herniated the disc doing laundry in Dec 2022 resulting in unbelievable nerve pain and muscle spasms 24/7. I hardly slept for three weeks. Got some injections, was told I’d need surgery to repair the disc and on Dec 24 I went for a short walk and the VM started. It hasn’t stopped since. I had back surgery 2/13 so am trying to recover while feeling like I’m on a rocking boat almost 24/7.

I was already on nortriptyline and started daily Nurtec and have tried Ajovy and Emgality injections (3 rounds). I got Botox in early February. I take promethazine for nausea and was also on a scopalmine patch for 3 weeks. My vision hasn’t resolved. I’m now on .25mg of clonazepam at bedtime and can take it once during the day if needed. I am tapering up to 10mg of Celexa and am on 5mg for two weeks before I try the 10mg. I’ve had occipital nerve blocks and trigger point injections. I was doing weekly infusions but my veins weren’t cooperating and I’d only feel better for 24 hours post infusion.

My son is severely disabled and needs me and that is the hardest part. I go to bed feeling like I’m on a boat and wake up most days feeling that way too. The clonazepam I started a week ago and so far it’s the only thing that has calmed it down. I cannot care for him or be around him and our dogs because their motion makes me too sick. I feel like I am missing out on life. Most days I can only leave the bedroom for 20-30 minute periods of brief activity. I do try one 5 minute walk a day outside if my back is feeling up to it. I can’t watch tv and looking at phone and computer is nauseating.

I’m hoping for inspiration and hope as the physical recovery with my back plus the disabling daily VM is just overwhelming and exhausting. I’m very lucky to have the best husband in the world. He’s doing everything and most days has to help me a lot too.

That sounds really tough for you all. You do seem to be getting access to and trying everything you can. Hopefully, something will work for you. I’ve always found that acute attacks do eventually calm down a bit so that I can be a bit more functional. Your body and mind must have been under terrific stress with the herniated disc and subsequent surgery. Often acute VM/MAV follows in the wake of a significant life stressor. I’ve always found that eventually acute attacks calm down a bit. You are probably running on empty and you have a huge and long running responsibility in caring for you child. It’s a lot. Try to be kind to yourself, let your lovely husband take up the slack (I’m sure you would do the same for him if he were in your situation)and just live from day to day, hang on to small victories and improvements.