Hello! VM/vertebral artery dissection/anisocoria/connective tissue disease sufferer here :)

Hi all,

I’m so glad to have found this forum but I wish I’d found it about two years sooner!! My health took a massive downturn after a spontaneous vertebral artery dissection that seems likely due to an underlying connective tissue disease (like Ehlers-Danlos/EDS or vEDS) as I’m also hypermobile. Or the tear could be completely random! Apparently it’s fairly common and they tend to heal on their own. Anyway I know people worry about dissections and uneven pupils so I thought I’d put this here and if anyone happens across it they can ask.

The diagnoses I have had since 2021-ish:

  1. Vertebral artery dissection, right artery
  2. BPPV (turned out to be incorrect)
  3. BEPM - benign episodic pupillary midriasis (episodic anisocoria). Possibly related to migraines. Sometimes my pupils are ovoid, it now affects both pupils, and they’re often off-centre. I can’t drive at night.
  4. Vestibular migraine

I first went to a GP because writing on my laptop on my bed would make me feel like I was tipping to the side. I would write for 10+ hours a day and bad posture etc. but I found using a computer at all would cause it. Eventually just sitting on the sofa caused dizziness too, so after a couple of months I thought I had PPPD. I was having a lot of nausea which I’d never really had before (I was 28 or 29 when this began). I had classical migraines with aura, back-to-back for 10 days and I’d never had one before. This all started in May 2021 and by November I couldn’t work. I couldn’t sit up, constant headaches, could no longer run or exercise, constant afterimages, had major nausea worsened by shopping centres, loud patterns, etc.

I’m going to skip all the symptoms I eventually got because it would take too long.

A GP ordered only a brain MRI in June (I went to the same GP so many times, and I’d always complained about my neck). By this time I’m seeing the GP so much he is getting visibly irritated with me and writes me off as hypochondriac. The MRI came back fine because they didn’t scan my neck. GP diagnosed me with panic attacks and BPPV and gave me a triptan and Epley manouevres to do. I would see stars etc. I really don’t know how I avoided a stroke. It took 6 months to diagnose, I was twisting the tear in my neck with the Epley manouevres, and I would occasionally take a triptan which constricts the blood vessels lol.

I found a neurologist who immediately suspected dissection, so I went back for an MRI of neck/brain vessels and they found an extracranial dissection in my right artery. I went on a heavy dose of bloodthinners immediately and headaches started to improve, but the dizziness/motion sickness persisted. Now I’m off bloodthinners (except aspirin) and taking verapamil and have a much better GP. I see a stroke specialist for an MRI once a year, my neurologist every 3 months, and a vestibular physiotherapist every month or so. My stroke specialist has advised me to never, ever have my neck “cracked” by a chiropractor, and to avoid weightlifting. Too easy lolll I hate both of those things!!

Meds I’m on/tried for vestibular migraine:

  1. Topamax (topiramate): didn’t work, worsened my depression
  2. Propranolol: worked so well for a while but I have well-controlled asthma and it caused the first asthma attack I’ve had in about 18 years. I did notice my hair started to thin, and I felt flat. Was good for my anxiety and I was on it for a month.
  3. Atenolol: better for asthma, but I was still having symptoms. Felt very flat (I’d been on beta blockers for over month in total).
  4. Verapamil: half a tablet, and moving to a whole tablet next week. I think a whole tablet is 240mg for me. It’s pretty good, but it doesn’t help the tinnitus/BEPM/photosensitivity as well as the beta blockers for me. I still can’t sit in a chair and write on a laptop, which I’d started to do on propranolol. But I’m only taking half a tablet and it’s early days!

My neuropthalmologist has suggested that the dissection possibly triggered the VM. Regardless, things are improving and the dissection has healed after 2 years. I really thought nothing would help the dizziness. I have no discernible food triggers but anxiety makes it all much worse!! So I’m managing that better by quitting alcohol and gradually exercising more. My next thing is deciding whether to get the DNA test for EDS but I’m focusing on one thing at a time :smile: happy to be here