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Date of last update: 10/04/2017.

Forum Name: Headaches

Question: Debilitating Headaches with no relief

 holla74 - Wed Sep 24, 2008 8:52 pm

I have and uncle that was diagnosed with retroperiteneal fibrosis a couple of years ago and currently is on steroids and tomoxifen for this and is not having any problems with that, but the past yr. or so he has started having BAD headaches and even passes out when he stands up and walks. He has been to sooooo many doctors and hasn't gotten any real answers, they have done cts, mris and lord knows what else, they give him a shot, send him home with mepregane (ecuse the spelling) for pain and just recently started him on a pain patch which neither is helping. He just sits and holds his head can't stand light etc. The doctors did tell him he had some sort of cyst or something in his temple area, but they cannot remove it b/c it is to close to his brain. He has also experienced vision loss with this. Wondering if this is related to other dx or maybe due to long term steroid use or what? Is there anything you could recommend to do, test medications etc. the family is gettin really frustrated and worried. Thanks for any advice you may have.
 John Kenyon, CNA - Fri Oct 10, 2008 9:58 pm

User avatar Hello -

From your description of the headaches it sounds as though this could be due to one of several causes related to retroperitoneal fibrosis. The sensitivity to light, loss of vision, along with excruciating headaches, would normally sound like classic migraine. However, due to the other factors and the fairly constant nature of the headaches and the setting of the primary disease, plus the finding of "something" in the temporal area but "too close to the brain" for excision suggests this mass may be causing reflex headaches of the migraine type, since it is located in the same area where the dilated blood vessels which cause classic migraine do their mischief. I'm wondering if a) the mass, cyst, whatever it is, may be causing the headaches (and if it truly cannot be excised or at least reduced somehow) and b) if it isn't possibly an "orphan" mass that has been seeded by the primary mass in the retroperitoneum. These are questions that need to be posed to your father's doctor, as the case is complex and certainly can't be diagnosed from a distance, but you've provided some pretty interesting and suggestive evidence.

There is also the matter of your father's passing out when he stands up, which is more likely caused by some interference with normal blood pressure maintainance due to the retroperitoneal mass pressing on the aorta. A guess, but it seems reasonable.

If your father's resting blood pressure is normal or at least not wildly out of control, then this seems the most likely explanation for the fainting spells. If the blood pressure is grossly elevated, this could have something more to do with the headaches, but seems, to me, a stretch. I'm sure his doctors have looked past (or through) the temporal mass as a possible cause of the headaches, but because of its location I really suspect your dad's having chronic pseudomigraine, which, since it's not caused by dilated blood vessels, won't respond to the usual vasoconstrictor drugs used to treat migraine.

Powerful pain medication may be in order in the short-term; mepergan seems an odd choice, frankly.

Please follow up with us, especially if you have any further details to add. In the meantime I'd strongly suggest a consult with a neurologist regarding the headaches, which I believe may be psuedomigraine. A neurologist who specializes in pain management might be optimal.

Best of luck to you and to your father.

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