PalMDAnyone wanna talk about headaches? I'm not a neurologist, so much less an expert than they are but I'd like to share a personal experience here for those who are interested, 1/n
migraines run in my family. I used to get them occasionally, but more often I would get "normal" headaches. A few years ago something changed. 2/n
I started getting right-sided headaches,--neck aches really, but they "generalized" to the head. I didn't often have nausea, light-sensitivity, etc, but sometimes had eye pain and stuffy nose on that side. 3/n
I tried cutting back on caffeine. I made sure to use my CPAP. I did neck stretches. Nothing seemed to help--except NSAIDs--these always helped. But I was getting to the point where I was taking the almost daily, increasing the risk of NSAID-induced ("rebound") headaches, hypertension, and kidney disease. 4/n
5/n I also got some rolling laptop desks for the office so i wasn't flexing my neck constantly. I do have a history of neck problems (probably portaging too many canoes) and so i started to wonder if my headaches might be "cervicogenic" (coming from the neck).
6/n I don't actually remember the exact sequence of events but the pandemic hit somewhere in there. I consulted my neurology colleague who gave me some suggestions. I tried pregabalin. I tried PT. I had MRIs which thankfully were normal I tried neck injections/nerve ablation. I got mild, brief relief.
7/n I started tracking my headaches, mostly to track my NSAID use so that when my kidneys failed my doctor would know why. But I was able to see patterns, to really track the frequency of headaches and interventions. This was a game changer.
8/n the other game changer was science--the discovery of CGRP antagonists, meds that work in a novel way to treat migraine pain. I mean, did I truly have migraines?
9/n Headaches fall on a jagged continuum and they aren't always easy to categorize. Mine were sometimes migrainous, sometimes more like cluster headaches, sometimes like muscle tension headaches. But I decided (with my neuro) to try CGRPa's to abort headaches and cut back on NSAID use. They seemed to sort of work, maybe, but took a while to kick in. (FYI I HATE the way triptans make me feel so I take them only if I have a "real" migraine).
10/n Anyway, at this point we decided to try prophylaxis with Qulipta, one of the CGRPa's (I'm using US brand names so people don't have to google). (BTW, one of the "lulls" in my headaches coincided with vacation, coincidence im sure).
11/n according to my bar graph, qulipta was working pretty well. I was having 2-3 headache a week instead of 5-6. But...
It turns out Qulipta can cause constipation, and I swear I thought i had cancer or something--loss of appetite, weight loss. I was miserable. Eventually, I stopped the drug, the migraine frequency increased, and so we tried a different CGRP, Nurtec.
12/n Nurtec didn't bother my gut in the least. It also didn't work on the headaches.
So then we moved to an injectable med, Ajovy. THis was about 3 months ago.
(As an important aside, ALL of these drugs cost a fortune. I happen to have excellent insurance and my income is that of a physician. This isn't the norm obvs)
13/n
Anyway, the damn stuff is working. And the medical literature says there's no association with constipation. Except there is. Not as bad for me as qulipta, but....
Anyway, the damn stuff is working. And the medical literature says there's no association with constipation. Except there is. Not as bad for me as qulipta, but....
14/n For now I've found a balance--a drug that works fairly well and whose side effects are real but mostly tolerable.
I don't think of myself as having a chronic illness--I'm not losing work, my life in only minimally disrupted. But imagine for a sec if it were only slightly worse, or I had a lower income, worse insurance.
ANyway, that's the story until now.
/fin
So today was my injection day. The last 3 or 4 days I started having daily headaches again. TO me that's actually good news, confirming that the meds are working.