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bambalam

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CH mislabeled as headaches?
Oct 23^rd, 2018 at 11:46am

I'm sure that someone has brought this up before but does anyone else think that we mislabel clusters by referring to them as headaches? To me it would be like referring to appendicitis as a stomach ache because they are in the same area.
This is much more about eye pain (or behind the eye pain) that then radiates out into the head.
This is my first time back to the forum in about two years as I am just starting a new cycle- have been a sufferer for 25 years. After I turned 40 they seemed to get less frequent but just as painful. It is so discouraging that after 2 years away there is really no more information on stopping this than there was 15 years ago.( I certainly don't mean to sound disparaging or unappreciative of all the people trying!) It just seems that if we call them headaches, peoples response is almost always "yeah, I get headaches sometimes too- deal with it". Maybe thinking about them in a different way- as a nerve issue or an eye issue would start some people looking at it differently and possibly come up with other treatments?
This is just something Ive been thinking about for awhile and figured that this is the place to talk about it.

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Trent

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Re: CH mislabeled as headaches?
Reply #1 - Oct 23^rd, 2018 at 1:17pm

I agree, calling them a headache to non CH sufferers is an injustice. I have gotten the oh my or I "insert random person" gets bad headaches too. Not that I don't feel bad for anyone who gets migraines, Stress Headaches, ect, I just don't believe its the same. My boss once said his wife gets bad headaches and it doesn't effect her work. Took a lot of self control that day.

I've started to say that I have a neurological disorder that flares up for a couple of weeks a year that causes immense pain in the nerves that run alongside my face. If they press for more info I will elaborate and say that it is the Trigeminal nerve. If its someone I trust and their interested, I ask them to lookup Cluster headaches on wiki.

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Trent.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: CH mislabeled as headaches? Reply #2 - Oct 23^rd, 2018 at 3:44pm It could also be argued that CH is not a neurological disorder at all, but a vascular one, in so far as the cause of the pressure on the Trigeminal nerve, and thus the pain, is vascular dilation.
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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: CH mislabeled as headaches? Reply #3 - Oct 23^rd, 2018 at 5:52pm I agree completely, Bambalam. I've called CH many things in the past but in the interests of decency I won't list any of them here.
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scavenger8

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Re: CH mislabeled as headaches?
Reply #4 - Oct 24^th, 2018 at 11:23am

I pretty much think its a neurological disorder do to that even before i started getting CH even since i was a kid having my schedule thrown off and a perpetuate of thinking I need to be moving around in heated frnzy was a little bit more than just expected norms. Its something i always had to compensate for through out my life. I imagine vascular issues are big contributing factor especially as we get older. Im on the Vit D regime thats been a life savor. I'm going to start looking into some vascular health stuff. At my age 54 im sure that would be beneficial. just reading here thnks and picking up on youre guys incite.

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maz

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Re: CH mislabeled as headaches?
Reply #5 - Oct 27^th, 2018 at 4:14am

"this is much more about eye pain"

Not for every one. I have the most pain in my temple, but quite a lot also in my teeth and jaw (upper and lower), and deep in my sinuses behind my nose. My eye waters copiously and my eylid swells and droops a bit, but my actual eye doesn't hurt. It's probably the only place in my head that doesn't.

However, I do agree that the word "headache" is a joke. It's like comparing a great white shark to a herring. To get over the non sufferers attitude, I don't call it cluster headaches (except to those who know). I tell people I have Trigeminal autonomic cephalgia, which is the medical name. No one says they get that too.

I was at a family party a few weeks ago and was talking about it to someone who knows what it's all about. A distant cousin who I rarely see overheard, and came rushing over to reccommend the hemeroid cream she uses for her "clusters". Huh

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« Last Edit: Oct 27^th, 2018 at 4:15am by maz »

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: CH mislabeled as headaches? Reply #6 - Oct 27^th, 2018 at 5:40am I must try that Maz. Do you apply it all over your head, or just on the effected side????? Peter.
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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: CH mislabeled as headaches? Reply #7 - Oct 27^th, 2018 at 7:12am maz wrote on Oct 27^th, 2018 at 4:14am: ...and came rushing over to reccommend the hemeroid cream she uses for her "clusters" Reminds me of when my brother told me that using oxygen was a pain in the behind. I suggested he re-read the instructions.
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maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: CH mislabeled as headaches? Reply #8 - Oct 27^th, 2018 at 9:50am Peter - give it a try. We've tried everything else haven't we and who knows - this may be the cure we've all been waiting for. Brian - I hope you don't let him share your mask.
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Marc

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Re: CH mislabeled as headaches?
Reply #9 - Oct 29^th, 2018 at 8:52pm

Peter510 wrote on Oct 23^rd, 2018 at 3:44pm:

It could also be argued that CH is not a neurological disorder at all, but a vascular one, in so far as the cause of the pressure on the Trigeminal nerve, and thus the pain, is vascular dilation.

And it could be argued that it is not a vascular headache at all, but rather a purely neurological headache. Or perhaps, as a long shot.....a hybrid.

As I see it, vascular constriction meds do much, much more than cause vascular constriction. As we all know Triptans are considered selective serotonin receptor agonists (maybe antagonists) BUT they impact multiple fronts. Most of which we still do not fully understand.

My exchanges with Peter Goadsby and Manjit Matharu have caused me to lean heavily a toward the neuro side as the root. In other words, I personally believe that the anti-inflammatory "side effect" of Triptans is a coincidental benefit for us. There have been limited studies of why, but it does nothing to actually discover the root cause.

Please note that I am not calling "foul" - just presenting my 2 cents in a world where pennies are worthless!

Respectfully,
Marc

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Graemel CH.com Veteran Offline I Love CH.com! Posts: 105 Taupo NZ Gender:	Re: CH mislabeled as headaches? Reply #10 - Oct 31^st, 2018 at 10:42pm Yes and a pet hate of mine is during a consult when a quack deliberately calls it a migraine. Smart arses. I had that happen and really had to control myself. He made eye contact and I felt he was daring me to object. I have not had a good run with doctors and have had to save myself with moderate success.
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Mike NZ

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Oxygen rocks! D3 too!

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Re: CH mislabeled as headaches?
Reply #11 - Nov 1^st, 2018 at 3:13am

I've previously listened to a neurologist on a ward round explain how CH is all due to neck problems and I've corrected him, pointing out that his ideas didn't align with research and best practice as published in multiple medical journals and his idea of the diagnostic criteria didn't align with the IHS diagnostic criteria. I then suggested to the horde of medial students who were frantically scribbling notes that the could come back after the ward round was over for some accurate info. Some did.

I've encountered some amazing doctors, nurses and other specialists, but I'm not going to just blindly accept what someone is saying from ignorance or laziness. Similarly many have been eager to learn all they can.

But it is easy for me to say the above since I do have enough of medical knowledge and have the confidence to do so.

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