I’m posting based on my sister’s story, in case it can encourage anyone else.
My sister and I live together so I’m very involved in her life and we are supportive of eachother.
4 months ago, after what we are pretty sure was a wicked COVID infection (she had intense body aches and stomach pain, then started losing her hair which her hairdresser said she sees all the time after COVID infections), she developed daily horrible headaches.
These headaches were debilitating. She lived in her dark quiet room for a month straight. Light and sound were excruciating. Medications did very little for her. We live in Canada so getting a specialist appointment or brain imaging takes months. Her family doctor started treating her for migraines, until more could be investigated. Triptans and Advil helped very minimally.
About 4 weeks into her headaches, she started getting ear ringing and vertigo. I am in health care, and was reading up on vestibular migraines. I read Ativan could help with the dizziness. She had an old prescription for flying anxiety that she never really took as they didn’t help for that. She took a 0.5 mg dose and her symptoms disappeared (her back pain, headache, and dizziness). We figured this was very likely VM.
For preventative medications, she had tried a calcium channel blocker (nifedipine) but had to stop because of severe leg swelling after 10 days. She also tried a beta blocker (propranolol), but got really low moods for the 4 days she tried so stopped (moods immediately improved).
She then tried amitriptyline. Initially at 10 mg, other than feeling abit sleepy, no issues. But slowly increasing it up to 30, even after weeks on the dose, she was so so dozy.
She recently switched to Nortriptyline. It has been a game changer. She is up to 40 mg. Some side effects but isn’t nearly as dozy so she has been able to titrate up. She actually has headache free days. She still gets vertigo on and off, but she can actually function in the world and not hide in her room.
She did also get Botox 2 months ago and will keep going with that as it may be part of what has helped her. About a month ago, she cut out lots of the dietary migraine triggers (aged meats and cheeses, msg, all caffeine). We notice some worsening symptoms if she cheats, which is helpful to know the lifestyle stuff is helpful.
She has been off of work for 4 months. She has a very active and dangerous job, so she has to be pretty symptom free to be able to go back to regular duties.
I wanted to write this, with her permission, to tell all of you thank you. She has been too loopy to be able to read most of this forum until recently, but you guys helped me so much with figuring out what to advocate for. I kept up hope that she could improve, even when it felt really overwhelming and hopeless. It helped me know how to encourage her.
I know her story isn’t done, but for her to have days she doesn’t dread is a huge win.
For caretakers, keep encouraging your headachy loved one, take care of yourself with support and lots of breaks, and remember it will get better!