I’m lucky to work at a job with a generous sick leave policy, including a COVID specific policy that enabled me to take (even more) time off for caretaking as well as being sick. I stopped work July 26, 2022 because my pregnant sister-in-law and my 13 month old niece were both sick. Then I got sick July 28, 2022. Between caretaking and then getting my period just when my (initially mild) symptoms were clearing up, I only checked slack on my phone occasionally to keep everyone updated.
The first time I tried to do work beyond checking slack messages was August 8, 2022. I got a headache almost immediately and nausea soon after. I texted my friend who has had long covid for years and she just wrote back “fuck.” That one word set off the entire rest of this story. At some level I knew at that moment that this was going to be a long haul, whether anyone was ready to officially classify me as a long hauler or not. (The Boston long covid clinics say you have to be 10 weeks out from infection and still have symptoms to qualify.)
I’ll share the evolution of my headaches and vision problems in tweets.
I’m still not able to stare at a computer without getting a headache (and nausea if I keep pushing myself). I hate that everyone is left to their own devices. There’s a collective responsibility that shouldn’t be left up to individuals to determine. We all will suffer as a result.
Today marks 3 weeks since covid symptoms started. FYI if you feel like it’s taking forever for your symptoms to subside it’s probably because covid sucks. It may be because covid sucks AND you have a secondary infection. Thankful for antibiotics helping with the sinus infection.
Currently accepting fun, light podcast and audiobook recommendations. Looking at screens still hurts. I need distractions because thinking about it makes me hate everything.
Note: That was the first time I went to the doctor complaining of a headache. Their best guess was sinus pressure and so we went with antibiotics. I’m not sure if I actually had a sinus infection or I just felt better because I did a better job resting after this (I’d planned to go on vacation so I took the week all the way off work even though I didn’t end up traveling).
Sooooo what do people with #LongCovid migraines DO? I’m the kind of person who usually watches TV *and* does a puzzle or crochets or scrolls. All of those currently give me a headache. Listening to an audiobook and petting the puppy is good, but mostly he likes his own space.
Finished listening to The House In The Cerulean Sea. It was great! What other audio books do you have for me? (Yes, tomorrow is 5 weeks since covid symptoms started and I still can’t focus on anything without causing a headache. Stay safe out there friends.)
Organizing closets is on my very short list of “things that don’t make me feel sick.” Today I tackled the pile of things in the office. Y’all. Just reading enough of the papers to make piles (condo, medical, work) resulted in feeling so sick I needed a 1.5 hour nap. I hate this.
8 weeks since covid symptoms started. I’ve listened to 12 audiobooks. I’ve taken 11 different medications. I still can’t work. I’m having a “looking at the phone at all hurts” day. Puppy and I are curled up with a fuzzy blanket listening to the thunderstorm and trying for hope.
In today’s episode of “wtf did covid do to my brain?” we have ‘sorting silverware from the dishwasher increases headache.’
Tomorrow is 9 weeks, one more week and I’m eligible for the long covid clinic.
I got sick peak summer, 🤞 I’m back to work before peak fall.
This one really is mind boggling.
Spend an hour chatting on the phone: no pain.
Take the pup for a walk and ensure he doesn’t ingest sticks or anything toxic: no pain.
Glance at a piece of metal to decide if it goes in the big fork slot or the little fork slot: headache!
This is a genuinely interesting question to me.
Why can I listen to a book but not read a book?
Why is scrolling Twitter sometimes okay but reading on my computer never okay?
Why can I play nonograms most days but not sort silverware?
What exactly is my brain protesting?
As more time passed I found more answers to these questions. I don’t have solutions, writing this still increases my headache level, but I do know why!
By the end of October I knew that Twitter (and my phone in general) was in dark mode while the computer was not. The bright light caused pain. That issue is called photophobia and is common with migraines.
In April someone on the long covid slack community asked about headaches and I was surprised to discover I could name 5 different types of headaches and their triggers. Of note, I only ever had a sinus headache before covid, and even that was rare because I’ve always been generous with my allergy medication!
- POTS – when I sit or stand up and blood isn’t reaching my head, it hurts. This tends to be more pain at the top of my head. Before I started my hydration routine it felt more like pressure than pain.
- Vision – I have a convergence insufficiency and so trying to focus my eyes hurts. I actually have double vision all the time, my brain is pretty good at filtering out the extra info when things are far away, the closer things get the harder it is. This feels more like a tension headache and I can feel the small muscles on my face straining as well as general pain on my head and neck.
- Concentration – this one feels more like a traditional headache I think? Mental or emotional exertion can lead to headache.
- Congestion – sinus headache
- Referred pain – feedback loop between tension in my neck/shoulders/back and head pain
I’ve seen 3 neurologists at 5 appointments. Plus a nurse practitioner and my PCP at… many more appointments. They’ve prescribed 9 medications, 4 of which I’m currently taking. I tried acupuncture, vision rehab, and prism glasses. I’ve had two MRIs. I’ve learned all sorts of new words like allodynia (it feels like my scalp is bruised even though I didn’t injure it) and occipital prominence (the base of my skull where the back of my head meets my neck, this is a frequent pain point).
So far there are 3 medications that successfully decrease pain, one I take at night so I can sleep, the other two allow me to exist and use my phone during the day without provoking too many symptoms. The fourth one I just started and I haven’t noticed any difference yet. Headache medications are all guess and check. One is a low dose of an old antidepressant that isn’t great as an antidepressant but it works well for headaches (amitriptyline). Another is a low dose of a medication used for people who are addicted to opioids (naltrexone) that works for inflammation more broadly. The third helps with my POTS, so it helps with the POTS headache, and is also known to help with other types of headaches (propranolol). The new one is a low dose of a seizure medication (divalpro) and currently I’m on an even lower dose than the dose that helps with headaches, I will increase in another week and then decide if it’s helping once my body has adjusted to that dose.
I’ve enjoyed learning the science of how my eyes (don’t) work together and how different muscles and nerves are interconnected. More on all of that to come!
Tina Cardone 