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CH and sleep


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Hey everyone. Are there any people on this site that do not get attacks at night, or have never had attacks at night. My neurologist is still unsure that I even have clusters (LOL) even though I know I do. He said, one reason is because my pain never happens during sleep. I swear I question how some of these neuros are even doctors. Everyone is different right? 

Kat

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When I was diagnosed, my CHs occured at specific times throughout the day after I woke up on mornings, like clockwork. Over the past 4 years I maybe only had 1-2 nocturnal CH attacks.

However, right now for the first time during this cycle I'm in, I'm experiencing night time headaches. It changes up on you, unfortunately.

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...it was the rare cycle when i DID have night/sleep hits...enough of an anomaly that in hindsight there must have been something else going on...like allergies, illness, inflammation....

...a doc who would say night hits are a determinative symptom in ch diagnosis would also say "women don't get ch"....

...find a new doc.....

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He needs to open his mind!! 'If ya don't fit in this box, well, you must have sumpin else.'

Yes, it is hard to find a good Neuro. But on occasion you can educate one. When I was young and chronic, I never had a night time hit. In 6-8 years of it. We don't fit in a box. I don't recall it stating that you had to be nocturnal to have CH anywhere. It does say 'often at night', not exclusively at night! 

So, you can ask him to show you where it says that you must have nocturnal attacks to have CH? Then bring out your copy from say any trusted source: Mayo Clinic, NIH, etc and ask him to point it out to you. And let him know that you know you are using up a lot of your precious time that he has allotted you, but this is needed. Google is your friend in this most likely. 

Might let him know that you have currently three 'friends' who have gone years without a nocturnal attack too. I'm going to go and look myself now.  

Ok. 'Occur mostly at night' is what is most often stated now it seems.  That is from the Mayo. So, find another doctor if he won't listen and believe you. Or if you are up for it, he can get out the O2 and give you some Nitroglycerin  and wait. You will get hit if you take it. Might be a really bad one too. But the sub-lingual bit can be a real 'b to the wall' test that opens his stupid eyes. 

Personally, if he won't come around, I would try to find another. But, the world is different now, so your options might be different too.

I'm sorry that yu are having to deal with this garbage Kat. 

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I will go from the worst attacks or 'wakers' at night to sleeping nights and 6 am kick me in the face and through the day ones, usually in cycles of them seeming to rotate forward through the clock. The one constant for ch is it is not consistent.

I truly wish there were more headache clinics out there for everyone, once I got sent there, I was diagnosed and immediately felt 'validated' by a team of neuros whose specialty was headache disorders.

Edited by devonrex
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Thanks everyone for the responses. Feels good to know I’m not alone out there. @spinythe hunt for a good neuro is really stressful. It almost seems like I need a headache specialist rather than a neuro. Neurologists seem so set on migraines and ready to push the latest and greatest migraine med on me. Nurtec, emgality etc. when I tell them it didn’t work for me, they are still someone convinced it’s migraines. Ughhhhg 

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I found a new trigger for me! I’ve been working my butt off the last few days for the holidays and I haven’t been getting enough sleep. I’ve had level 8-10 shadows since Wednesday. This morning I woke up with a CH type headache on the opposite side of my face. My nostril felt “tight”, not clogged or runny. It was weird. And my eye was throbbing with pain in my teeth on the same side. Then after about 30 seconds my nostril felt like it broke and I could breath normally again. Super strange. But yes, my sleep schedule has been out of wack this entire week and I am feeling the consequences ;( 

kat

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Kat I'd suggest it doesn't almost seem like you need a headache specialist type neuro as opposed to the garden variety type, more like you definitely do, based on your experience and that of zillions of other CHers.

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