My sister’s story

Mselkink · December 24, 2022, 2:25am

Hi all,

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!

Belindy · December 30, 2022, 7:06am

Wow that’s so great that our threads helped your sister so much. It does teach you a lot just reading hey. I also found this by searching for anything that could help. I wish her the best of luck and would love if she could one day update us on her journey

Mselkink · April 1, 2023, 3:57am

Update for encouragement

My sister is at month 7 of her journey. Her dizziness has basically been gone for 2 months (can return if she gets a really bad headache), which is amazing! Tinnitus also improved.

Headaches persist (mix of tension and migraine type), but less severe and less common (down to 2-3 headache/symptom free days a week, and 2 of the headache days treated with just Timolol drops, the other 2 days with Ativan). She is able to do much more now, though still not back to work. Less brain fog and fatigue, though she still naps about half the days of the week.

Her hair loss (from likely COVID which started this) has also slowed down a lot.

Her preventative medications include Botox q3months and Nortriptyline 45 mg at night (any more and she is way too groggy the next day). She feels perky on the rare days after she forgets to take it, but generally headaches are worse on those days, so we know it is helping.

She saw 2 neurologists - one was useless, the second was lovely and she is following up with her in a month. Initially she thought she had NDPH, but neuro was thrilled that by the time we saw her, she had had multiple spotty days here and there with no headache.

Neuro couldn’t exactly give us a specific diagnosis - she straddles NPDH (but remitting type), MAV (though lots of MAV specific symptoms have settled), and chronic migraines.

All in all we are so encouraged. The thought she may get to go back to work to some extent is very exciting!

Shout out to this community who kept me sane through lots of the roughest times, wanted to write a ‘good news’ story of improvement

Victory · April 28, 2023, 7:03pm

So awesome to see your love for your sister…Blessings

Mselkink · May 11, 2023, 4:24am

Okay, another update on my sis. Trying to come back to post encouraging updates because I know that was a big part of us getting through all of this.

Brief review - sis got COVID or some other weird viral thing Sept 2022. Horrible headache almost daily for the last 9 months. Tried many many meds (nifedipine, propranolol, amitriptyline, then settled on Botox, Nortriptyline, with rescue Ativan and Timolol drops). On this concoction, she wasn’t good, but she could function better.

Her diagnosis was not clear - ?MAV (dizzy +++, which since has settled), ?NDPH (except she would have days with no headache here and there), ?chronic migraine.

About a month ago, she tried a Nurtec, and 100% headache and all body symptoms gone. It was like magic. Got a sample from a US family member for 2 weeks of treatment. So amazing. Felt if it would continue she could go back to work! But we are Canadian and Nurtec isn’t available in Canada (yet). Tried ubrelvy and helped some, but short half life so symptoms would return. Just tried Qulipta (can get in Canada) - feels exactly as awesome as Nurtec.

So, even though she straddles several possible diagnoses, we think we finally found a ‘key’ that turns her symptoms off. I know that doesn’t exist for everyone - we are so grateful to have found something for her that makes her so much better.

I come on here to thank you all, this forum was such an encouragement through the darkest days. Keep trying new things! Don’t give up!