Atypical cluster or something else ?

[Tony Only]

(Here is a copy/paste of a message of a finnish patient who is diagnosed with cluster headache but nothing seems to be helping)

Anyone have similar symptoms: without treatment my pain is extreme 10/10 and it is focused in either of my eyes and is changing side very often, almost every time. Feels like someone is drilling into my eye, ripping kind of pain, I can't stay still, I beat my eye with my hand. The eye with the pain is tearing, nostril on my pain side also bleeding, other nostril is stuffed. My attacks last 2-4 hours and sometimes even 5-6 hours, when pain level is 10/10 I can't speak only cry and yell from pain. Some of my symptoms are same as in cluster headaches and some are not. That's why I am writing and trying to figure out is this cluster headache or something else. I have been diagnosed as cluster patient but I have not had head MRI taken although I have asked for it several times.

EDIT: Hot directly in eye helps somewhat, cold has made it worse. I have oxygen but it does not help much. Have used lot of triptans in years prior for migraines, now detoxed from them.

[devonrex]

The bleeding is way out in left field. So is some of the lengths. Gut feeling is it could be a very bad sinus infection, the side changing, blood and heat relief all kind of lean me that way.

[spiny]

Tony, the member really needs a MRI!!! The symptoms are odd. I would definitely make that the number one priority for the member. It is an 'odd' set of symptoms and that makes the MRI more imperative in my mind. 

For me, a sinus infection has obvious signs of infection: nasal discharge that is green or yellow. One side may get worse than the other if I have been lying with that side down. Otherwise, no. I have not found bleeding to be part of a sinus infection. In addition, with a sinus infection, my whole head hurts, not one side. 

But, we do know that some things being wrong in the brain can cause pain and symptoms. We had a young Canadian member who was having 'mostly' cluster symptoms, but with some odd bits mixed in. He finally had the MRI after over a year and they found an aneurysm and operated. He was pain free post surgery. He had daily pain that fit CH best of all the headaches, but it was not CH. He also had some 'odd' symptoms. Being in the Canadian system, meant that it took over a year to get a MRI. 

Please encourage him/her to push for that MRI like they their life depended on it. If medical won't do that, then a scan might help show an issue and then they would agree to the MRI. The symptoms worry me. I want to know how this turns out in the end, so please give us an update if you get one.       

As a side note to this, a friend took her grown son in for hernia surgery last Friday. He had been complaining bitterly about the pain from the hernia. Doc said he should not be in that much pain and blew him off, but did schedule the surgery. When they went in, they found a tumor along with the hernia. Ergo, the excessive pain in the belly. The tumor was pushing on internal organs. Had they bothered with a scan, they would have found it sooner. And he would not have been left to suffer waiting for 'elective' surgery during the pandemic.  

Seeing what is or isn't inside is a good diagnostic tool to use!

[Tony Only]

I will edit my post, I think the right term is discharge (thank you spiny!) and not bleeding - there is no blood, but clear mucus (thank you online dictionary)  I will pass on all replies in this thread !

I think MRI is essential in any way possible. Cluster symptoms with odd additions can be sign of something more sinister wrong in the brain and I fail to understand why it seems impossible to get these taken. I know of few people who have had a tumor, an aneurysm or such and when these are found many patients - or their families do not report these findings on communities. I doubt all neurologists are enough aware of these possibilities.

So you can be sure I will also return here to report any progress and how this turns out.

[Dr. Julie]

The bleeding and length of some of her attacks are out of norm. Plus she says she gets no relief from O2. It may be she's not getting high enough flow rate, etc. While the description is consistent with trigeminal nerve, that doesn't mean the mechanism is the same. She absolutely needs an MRI to exclude other causes. If it's atypical CH, she needs a specialist better able to manage it, I think. 

 

julie