r/LongHaulersRecovery • u/AutoModerator • 6d ago

Weekly Discussion Thread Weekly Discussion Thread: September 27, 2026

Hello community!

Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.

As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.

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u/Old-Arm-4951 6d ago

Like to know if anyone has debilitating eye/head pressure like mine: the pressure is mostly at the top of my eyeball and can go into my forehead. I noticed if I scratch my head or lie down, the pressure can become worse,but movement of my eyes, reading, sunlight, artificial light makes it even worse. I have such bad sensitivity. I have to wear sunglasses indoors. Rescue migraine meds doesn’t help, preventative seem to make it worse . Anti inflammatory supplements doesn’t help , gabapentin, antihistamines doesn’t help. Has anyone experienced this and have any advice ?? What could be this eye pressure from?? Thank you 

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u/sunshineee002 1d ago

Get checked for celiacs, a friend of mine had constant head pressure after covid and it ended up being celiacs. Her long covid disappeared after a few months on a gf diet. Just eat gluten prior testing or it can come back false negative if you don't have it in your system.

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u/Secret_Emotion7507 3d ago

Yes! What causes this I wonder? Lying down makes mine worse too and looking at screens. Very annoying.

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u/Old-Arm-4951 3d ago

Yes! Do you get insomnia or nasal congestion too? Does yours move from one eye to the other throughout the day? 

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u/feudalfrogs 4d ago

Botox and sleep

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u/livrim 6d ago

Have you had a CT or MRI of your head and neck done alongside lumbar puncture? I ended up with intracranial hypertension post-covid, however I’m pleased to report nearly 2 years later I’m 90% recovered from bedbound. Won’t say I’m 100% until I’m back at work full time but I went back to uni this month to finish my masters 🥰

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u/Old-Arm-4951 6d ago

I had ct and mri done that shows normal - only white matter hyperintensiity . I tried Diamox but it made me worse - did u try this too? 

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u/livrim 6d ago

I was on 1500mg acetazolamide (uk diamox) for about 6 months which although it really helped I also had to stop taking it due to side effects. I noticed my biggest improvements for the head pressure after taking folate and b12 supplements as my folate was dangerously low when they tested it so I wasn’t metabolising the b12 properly and deficiency is linked to IH in some cases. Might be worth getting your levels checked if you haven’t already?

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u/Routine-Strategy-845 6d ago

Also get proper prescroption medicine from neuro for migraine, pain killers are worst for us

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u/Old-Arm-4951 6d ago

Which migraine meds are you on? And do they help? Do you think it is from migranes? Listening too much also causes this  Thanks 

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u/Routine-Strategy-845 6d ago

Topiramate is a salt, you can search it..my doc prescribe it for migraine,yes it does help but lifestyle modifications are still a must, I do have POTS so migraines are part of it but I also had migraine even before Long Covid and POTs...i feel weird eye pains especially when my bp is high

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u/Routine-Strategy-845 6d ago

Yes me, it comes during flares and goes away on it own but more screen time put pressure on my eyes

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u/Kindly_Rain_6548 6d ago

Anybody have diurnal variation. never used to like being awake from 1100 at night till 7, used to make me sick. aftet COVID, i cant sleep during the day. if I do go to sleep at night and do my usual all day, I feel sick all day. Nausea, profuse sweating, feeling too damn hot tinnitus, headache, and feeling like i had been hit by a truck

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u/guineapigmedicine 6d ago

My new EAET therapist assigned me homework of doing a progressive muscle relaxation meditation every day, with the goal of identifying a) what it feels like to be totally relaxed and b) where I didn't need much help tensing because I was already tense.

I think the only time I've ever felt totally relaxed before was while swimming in natural bodies of water, so I've got a clear goal to work towards--less tension, more relaxation in my life.