Brain MRI’s are said to have little value in treating patients with headaches – but we do ever more of them:

In their JAMA Internal Medicine paper, the researchers reported that headache-related brains scans increased from 5% of headache visits in 1995 to 14.7% in 2010.

Source: Most headache-related brain scans aren’t needed – Harvard Health

About 1% of those that receive a brain scan (e.g. MRI) reveal an anomaly while the other 99% have “no findings of significance”.

Of the 1% that find “something”, these are subjected to further tests – and those findings, in turn, in almost all cases, say the researchers, rule out any problems problem. In other words, close to 0% of brain scans produce a useful finding for headache patients.

Until recently I was suffering visual auras, only rarely with migraine, up to 3x per day. In December, I had visual auras on 18 days, somedays more than one, for a total of 24 during the month. Thes were on going since mid-2021.

I spent $4000 out of pocket on recommended tests, all of which found nothing. The next step would have been to see a neurologist, who would order a brain MRI. Per my insurance company, this would have cost me about $3,000 +/- out of pocket. Because I have had prior brain injuries (5″ skull fracture plus 5 additional concussions), it would not be surprising if a scan found an “anomaly” requiring further testing.

Fortunately, based on my 2+ years of headache logs and detailed record keeping, I eventually found the cause: the occasional use of generic Flonase, known as fluticasone propionate nasal spray.

Flonase was recommended to me to treat a blocked Eustachian tube and to treat seasonable hay pollen allergies. I used it as needed and usually not every day – except when nasal congestion was bad.

Visual migraines are a known but not publicized side effect of Flonase, per a 2009 peer reviewed study conducted by the World Health Organization. Among people who previously had migraines before starting use of Flonase, Flonase acts as a migraine trigger. For some patients, this side effect did not begin until several months after first using Flonase, and then triggered migraines between 1 and 100 hours after using Flonase. This long delay made it very hard to identify the association.

Ending Flonase ended the visual migraines. I had to discover this on my own, after spending $4,000 out of pocket. If I had continued down the next medicine rabbit hole, I’d be out an additional $3,000.[1]

Unfortunately, this is not the first time I had to resolve problems on my own. There are many examples but an easy one to understand: for 11 years I had random body parts swelling, including my lips, tongue, cheek and eventually my throat. I was diagnosed by 4 doctors with “idiopathic angioedema” (which is Latin for “I have no clue”).

After ending up in an ER at 4:30 am with a 70% swollen throat, I went to PubMed and began reading the literature. I eventually read a paper that found 85% of “idiopathic angioedema” diagnoses were usually food allergies. I was allergic to 3 somewhat uncommon foods (almonds, cottonseed and safflower) – and I had “late phase” reactions that could occur up to 16 hours after consuming the item. It took me 9 months of record keeping to find the 3 items.  An allergist then did double blinded skin prick tests and confirmed all 3 allergies.

If I had not done this research work myself, I would not have resolved this life-threatening condition. Converted to 2023 dollars, I spent between $8,000 and $10,000 out of pocket before I solved the problem myself.

Unfortunately, these are two examples (visual auras, food allergies) of 4 times I had to figure out medical problems myself.

[1] Why so expensive? I have an ACA crapinsurance policy. Our policy costs nearly $2,000 per month for 2 adults yet has a $17,600 deductible. The average group policy in the U.S. has a deductible of $1,760 – remarkably exactly 1/10th of this ACA individual market policy. We pay about $2k/month for catastrophic insurance and then pay cash for all health services.  This is the reality of the ACA insurance marketplace. It more than tripled our costs and delivers far less. You were outright lied to by ACA promoters. 

Coldstreams Skeptic