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CH and White Lesions


hugecomedyfan
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Hi all! 

I got an MRI on Saturday, and they found two small white matter lesions on the right side of my brain. The results said something along the lines of ‘non specific white matter lesions, roughly 3mm’. The results mentioned that this could be caused by small matter ischemia, migraine disease, vasculitis, demyelination, and Lyme disease. So a wide array of things. I have a follow up appointment with a neurologist so they can analyze the results more and better then my PCP can.  
 

Just curious: does anyone have experience with this or more info? Everything I try to research sounds extremely dire and hasn’t been too helpful. 
 

Thanks a ton in advance per usual. 
 

 

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Hi HCF,

I had something similar with my last MRI.. exact wording was (Overall unremarkable MRI of the brain. Tiny foci of T2/FLAIR signal abnormality within the RT external capsule is likely of little clinical significance.) When I spoke to my neuro he explained it to be "white matter" most likely some scaring/scar tissue. I certainly can believe that these bangers have caused some scaring...  He also mentioned that it can be somewhat common in people with migraine or CH. 

I did the same research thing that you are doing and only scared myself worse than I needed to. Talk to your neuro about it and you will most likely feel much more at ease. It's really easy to research yourself into a fright.

 

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It would be foolish for me to say it's nothing to worry about, but . . . 

"White matter lesions are among the most common incidental findings—which means the lesions have no clinical significance—on brain scans of people of any age." https://www.brainandlife.org/articles/what-are-white-matter-lesions-are-they-a-problem

My daughter's first MRI for CH, more than ten years ago, showed some WMLs.  Nothing bad has happened to her in that regard.

People with migraine have white-matter lesions more often than other people.  Imma guess that's probably true for people with CH, too.  

 

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24 minutes ago, BoscoPiko said:

I did the same research thing that you are doing and only scared myself worse than I needed to. Talk to your neuro about it and you will most likely feel much more at ease. It's really easy to research yourself into a fright.

...yeah...THIS!

...for reasons other than CH i've had multiple scans of various kinds.....nearly every one shows "something" that draws comments re potential causes. it's radiologist CYA and always scared the spit out of me until i came across a urologist who bemoaned that....and another physician who said "we ALL have  "anomalies" ...you are more likely to die with than from....a scan in and of itself is rarely determinative of anything".

...do your research, i did, but use it to ask questions rather than come to scary conclusions...

...fwiw...and this is a personal observation based on years of being in the clusterhead community. there are conditions that mimic CH symptoms...and which makes a diagnostic scan worthwhile, but, i've never seen any lit that describes CH being a causative factor in scan anomalies...

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1 hour ago, jon019 said:

there are conditions that mimic CH symptoms...and which makes a diagnostic scan worthwhile, but, i've never seen any lit that describes CH being a causative factor in scan anomalies...

Thanks a lot, Jon! You’re saying there is no evidence that CH causes anomalies? I’d be curious to learn what conditions are similar to CH symptoms. 

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2 minutes ago, hugecomedyfan said:

Thanks a lot, Jon! You’re saying there is no evidence that CH causes anomalies? I’d be curious to learn what conditions are similar to CH symptoms. 

I've seen @CHfather mention Hemicrania continua a few times as being somewhat similar and often misdiagnosed cases between CH and HC .. I hadent heard of it prior to his mentioning. When looking the condition up it seems to be close. I believe he mentioned a test of sorts with medication that is effective for HC but not CH...

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53 minutes ago, hugecomedyfan said:

Thanks a lot, Jon! You’re saying there is no evidence that CH causes anomalies? I’d be curious to learn what conditions are similar to CH symptoms. 

....i'm saying i have never seen it reported...but absolutes re CH do not exist...if there are fixed/visible physical manifestations, it would seem they are rare...i would not take that to mean there is no evidence. mostly talking the dreaded brain scan, while also noting that the pupil of my affected side eye is permanently constricted. eye docs/neuros just shrug...

....since it was well known at work that "jon has CH"....i was approached by folks suffering from "headaches" of various kinds on a fairly regular basis.  one friend of a friend had many of the classic symptoms of CH (unilateral, excruciating, autonomic symptoms, same daily timing. etc) and i was asked "is this cluster headache?". sure sounded like it, but i am NOT a physician, refused to say, and strongly urged a visit to a neuro and "a scan to rule out potential underlying causes".  a careful diagnostician would consider this routine (and one of the reasons to find a HA specialist). he took that advice and it turned out to be a rapidly growing tumor that was life threatening...found/removed in time. i do not know the details of location....and i do not wish to alarm....so you are on the right path to eliminating other cause with the neuro visit...

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My first scan showed 'several' of them and the Neuro mentioned Migraines, along with the radiologist who read the scan. As stated above, they are often see in migraine patients. Just don't let them try to turn you around and now say you don't have CH, but Migraine. It also shows with CH and that too is stated above. 

In 15 years, I have had 3 scans. The white matter Flairs or whatever they are called have remained the same over time. Even with my dog knocking me out!!

Your Neuro will be able to explain it better. I researched my behind off and scared myself silly since they said 'mini-strokes' at one point. There was a caveat there though, as in 'might be'. I have had no issues to date and still function as I always did, so I don't think that I am stroking out. With the consistency of the scans, my neuro does not think I am losing it either. 

I suspect that CHers are prone to them, just as Migraineurs are. They just have not studied that yet. 

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