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Very odd occurrence. What do you guys think?


kat_92
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Hey everyone, 

last night I had the weirdest headache I’ve had thus far in this horrid journey. For 2 years now my shadows/ CH have been on my left side. Never on the right. I’ll get a tension headache on the right but never a CH. I went out for sushi last night and at 8:30 I got a throbbing pain that was 8/10 directly behind my right eye and my right temple. It lasted from 8:30 til 1 am when I eventually fell asleep. It would throb for about 30 seconds, go away for 2-5 min, and come back and throb again. It was soooo strange. I don’t think it was a Ch, maybe a horrible migraine? I had no other symptoms with it. What do you guys think?? 
 

kat

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Hi , @kat_92 is 8:30 p.m. so did your headache last around 4 and half hours ?

I hope it's not a sideswitch. I recently asked about this on Facebook since so many fellow patients in Finland have had their CH change side this year or last year (and me too).

I have had CH for almost 30 years always on the left but around a year ago the Beast moved permanently to the right (gave first signs in 2019). I thought it was some kind of breakthrough attempt since I have pretty heavy duty treatments. It sure was weird having everything else move to the new side too, including muscle problems which I had thought had something to do with being right-handed

It took me a while to figure out it's CH since I had no clear cycle or even bad hits. Attacks were so strange I thought it must be some other headache. I could be having really bad shadows 24 hours plus, or the attacks were too long. Plus being the "wrong" side and all. My neurologist diagnosed it as migraine.

It was CH all along moving slowly to the other side. Still to this day my first thought always is "this is something else" because my brain just does not recognize this happening on the "new" side.

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@Tony Only hey! Yeah it was around 4 hours and I still have a dull pain behind both eyes at the moment. Feels more like a shadow. I’ve never felt a throb like this. And it was coming in waves for 4 hours. I guess I’ll find out if it’s CH if I get it again at 8:30 tonight. I’m hoping it was just the soy sauce that I ate. I’m not sure. I felt dizzy and out of it at the time. Almost like my vision got a little blurry. I also slept until 11:30 today which I never do. I just felt “out of it”. It was odd 

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I also feel like so much information out there about CH is wrong and leads to a misdiagnosis. It could very well be CH changing sides, but God forbid you mention this to a neurologist because “textsbook CH never change sides” 

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1 hour ago, kat_92 said:

@Tony Only hey! Yeah it was around 4 hours and I still have a dull pain behind both eyes at the moment. Feels more like a shadow. I’ve never felt a throb like this. And it was coming in waves for 4 hours. I guess I’ll find out if it’s CH if I get it again at 8:30 tonight. I’m hoping it was just the soy sauce that I ate. I’m not sure. I felt dizzy and out of it at the time. Almost like my vision got a little blurry. I also slept until 11:30 today which I never do. I just felt “out of it”. It was odd 

For me the "migration" period lasted over 6 months, pain did not follow any schedule like CH should and was more constant (lasting whole day) than attack-like. Slowly it formed into a new kind of CH on my right side. Kind of reminded me how this was 30 years ago when it began. It's creepy and spooky, I wish the damn thing would return home.

I too had dizziness, nausea, sweating - things that I never have with CH. It really feels like it is trying to break through something.

I wish whatever it is it will pass soon for you !

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@spiny hey! Haven’t had the occurrence again since that Monday so I think it was a fluke. Unless my CH is in the process of switching sides? But I am staying far away from soy sauce/ high sodium foods for a while. It was quite debilitating. Still can’t get a hold of any MM :( relying on vitamin  D and verapamil until I can get it. Last year my headaches were a breeze because I was on a really strict busting regimen. I’m convinced it’s the only preventative that works...for me at least. 
 

kat 

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"Soy sauce. Soy sauce also contains tyramine (migraine, sometimes CH trigger) and sometimes monosodium glutamate (MSG). MSG, which is used as an additive in many other foods, has been found to cause cramps, diarrhea and headaches. Additionally, soy has large amounts of salt, which can lead to dehydration – and, therefore, to headaches."  (it aint the Na, its the dehy).

   Foods That Can Trigger Headaches - Penn Medicine

 

Edited by jon019
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I recall being shocked when first hearing of CH'ers experiencing a side switch, but I guess like many others, I've seen enough such reports that they provoke pretty much zero shock value any more, and even seem fairly common.

Sorry to hear you went through that ordeal @kat_92 - if it was an MSG or similar food culprit, here's hoping it can be avoided easily enough going forward for prevention of a repeat. I could understand you becoming pretty gun shy about ingestion of soy sauce now!

 

 

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