Hi Harry, Just a quick note. My son actually tried agomelatine by itself for about 10 days but it didn’t seem to work very well. He was very disappointed because he really thought it would be the solution. He then tried the DORA, daridorexant by itself. He fell asleep Ok but he didn’t stay asleep for very long. It was only when these 2 medications were combined together that his sleep started to improve.
Like you, my son has visual symptoms so I do suspect that light sensitivity and the “autogenic” lights of visual snow reduce melatonin levels (even with a strict reduced artificial lights at night policy) hence the usefulness of agomelatine to boost any melatonin that is produced naturally to maintain sleep once you fall asleep with the DORA. Maybe if you aren’t producing any melatonin at all you may need to use a slow release supplement of melatonin ?? Hopefully Dr Rao will come up with a solution that is adapted to your situation.
As for Mirtazapine, my son did use it at one stage before he had the decompression surgery. It did help him sleep due to its antihistamine effect but further down the road it had some very nasty side effects that I wouldn’t wish on anyone or the bystanders for that matter!!! Then getting off it was an extremely long difficult process as well.
@Chrickychricky has been very helpful sticking around after her surgery to share info, she shared this about Neuroplastic pain- not what you have but she mentioned needing to heal from a hypervigilant nervous system, I wonder if it might be interesting for you:
'Learning to work with neuroplastic symptoms has been life changing. It makes so much sense that people like us, who have struggled for so many years and have developed a lot of fear about what is happening inside our bodies, have subsequently developed a hypervigalent nervous system stuck in alarm mode. The language the brain speaks when it feels under threat is physical symptoms, real symptoms being generated by the nervous system itself rather than a specific structural problem. ’
@Emerald I really cannot thank you enough for your messages. They have really helped me. I decided not to try the Mirtazapine after hearing your son’s story and further research. I don’t want to create more issues for myself! Equally I am still desperate for some relief from the constant sympathetic overdrive. Really disappointed I didn’t hear anything back from Dr Rao, despite me following up. Do these surgeons not have even a little responsibility to help during the long post op period (I have paid for the additional consultation)? Am I expecting too much? I say this to flag to others also that they may need to self advocate post op.
I’ve got my fingers crossed for the prazosin. Be careful when you get up from your bed in the morning; and if your visual symptoms like visual snow get worse after one or two doses on it, don’t soldier on with the prazosin hoping that it will get better, get in contact with your GP and Dr Rao.
Just a quick update. I did not end up trying the Prazosin. I took my blood pressure before bed and it was 79/59. Which was just too low for me to feel confident taking the Prazosin which lowers it even more. I don’t want to trip or faint and cause other issues as @Emerald mentioned. And again, thank you deeply @Emerald for your messages and information.
Still no word back from Dr Rao which is really disappointing.
I am finding very small easing of the symptoms with Ashwaganda liquid drops. I have an appointment Monday with my POTS specialist who was the first doctor to notice my jugular compressions and refer me to Dr Elliot - so fingers crossed he has some ideas on what may help with the sympathetic overdrive.
@Harry - I hope your POTS specialist holds the key to you recovering from your sympathetic nervous system issues. You need a break & a good night’s sleep! I’m glad the Ashwaganda drops are helping you at least a little.
Sounds sensible, that’s a very low BP! I hope you can get other suggestions from your POTS specialist & good that the Ashwaganda might be helping a bit
