Constant visual disturbances for 9 weeks

[Bluemoon37]

Hi all,

I've been having chronic migraines since catching COVID in 2022. I had a bad run of 7 migraines over a week, 9 and a half weeks ago. Which led to the room shaking constantly, whether my eyes are open or closed. The room shaking is one of my signs a migraine is coming on for me, and this time, it just never stopped.

I was on Amytriptaline 50mg at the time and taking Sumatriptan to manage the peaks. My GP took me off Amytriptaline and Sumatriptan in case it was a bad side effect and I was seen by Neurology a couple of weeks ago and the eye hospital. They explained that my eye health is fine and everything points to a chronic migraine episode that although rare, could last this long.

My eyesight has been slowly improving over the past 9 weeks to be more like a shimmer. They've put me on Propanalol 20mg for the last week and a half which hasn't sorted it just yet, but it's slowly getting there. I tried 80mg earlier in the year and couldn't tolerate the side effects.

I've been following a migraine friendly diet and avoiding my big triggers. I'm also taking Magnesium, Riboflavin and Co-Enzyme Q10 and managing the peaks now with Naratriptan.

Has anyone experienced anything similar to this or could offer me any advice?

[AutumnLeaves7]

hi, I also developed chronic migraines & vestibular migraine after Covid in 2022. I have chronic dizziness/ off balance feeling but also during attacks everything around me seems to be shaking or shimmering like a heat haze almost. After eventually having balance testing with ent I’ve been told I have nystagmus in both eyes which they think is neurological in origin, most likely migraine related, and it could be what’s causing the world to feel shaky around me. Try looking up vestibular migraine on the VEDA website - I’m currently in Nortriptyline but it’s only been 6 weeks & whilst I’ve had some pain relief not much difference in terms of the vestibular or visual symptoms as yet..

[Bluemoon37 in reply to AutumnLeaves7]

It's really nice to hear from someone else who has experienced migraines following COVID. I never had headaches even and now all of a sudden after it just all kicked in. Have you ever accessed a long COVID clinic? Also what did you have to do to be seen by ENT?

[AutumnLeaves7 in reply to Bluemoon37]

Hi, yes I also have chronic fatigue and some other issues from Covid so was seen by the long Covid clinic originally, but they couldn’t help much to be honest.. I’m now under the CFS/ME service for fatigue management.. after I’d had chronic dizziness for 9 months I pushed the GP to refer me to ent, they didn’t want to, but so glad I did as they’ve been very helpful and seem very keen to try & get to the bottom of things .. my nystagmus wasn’t picked up by my opticians and it took ent to spot it using these high tech infra red googles ..

[Hans23]

I myself have shimmering or jumping vision during a bad migraine attack,other symptoms are balance problems,loud ringing in both ears and tingling face and arm and pounding headache at back of head.At first my GP thought I was having vestibular migraines but a neurologist said they are migraines with brain stem aura. My treatment is amitriptyline 20mg and ace inhibitor tablets. I still get headaches from but I take painkillers for them but I rarely now have neurological symptoms. If you haven't seen a neurologist try and push to see one.

[Bluemoon37 in reply to Hans23]

Glad to hear things have improved for you. The neurologist sent me back to my GP without doing a scan or offering an official diagnosis, just with guidance to try the front line drugs available at GP level. I feel a bit trapped by the system because I don't think they're really working and I'm getting too many side effects to increase the doses but they want me to reach the highest dose of them before I can access neurology level drugs. Other than all the lifestyle things I've put in place I feel quite overwhelmed like I can limit the peaks to an extent but I can't stop them coming completely. Is there anything else I can be pushing for to get me back to neurology level perhaps?

[Hans23 in reply to Bluemoon37]

To be honest with you,I was in a similar position as you at the beginning,doctor putting me on different meds to suppress them,nothing really worked. This went on for a year but it wasn't until I had a really bad one which put me in hospital and they suspected I was having a stroke,you see every other time I saw a doctor I wasn't sympathetic but when I went to hospital I was in the middle of one and they could see how bad it was and referred me straight away to neurology. It's a shame that it has to get that bad before they see you,but if I was you knowing what I know now I would push for neurologist and tell them it's having a big effect on your life as nothing is working or if you have really bad one go to hospital. First thing they did with me is gave a scan which revealed some brain scarring,I hope you get seen soon but keep pushing

[Onthemove1971]

Do you know about the podcast "Heads up"? They are 2 UK migraine specialist. I recommend listening to as many episodes as possible. Have they started talking to you about taking the new type of migraine medications? CRP-G?

Also, have they said something about Vertigo?

Hope you find answers

[Bluemoon37]

Thanks I'm having a listen to one of the episodes now about vertigo and vestibular migraines. They've given me an exercise to help with the vertigo and that's about it. Neurology sent me back to the GP to be monitored without doing a scan. They are very much trying me on the front line drugs first available at GP level before I can access the drugs that are available at neurology level. It's slightly frustrating to have to jump through those hoops but I'm just having to trust that they know best and hope one will get on top of it. Is there anything I should be asking the GP for?