So - I finally got in to see Goadsby after much hassle - the stupid receptionist has much to be desired at the UCSF Headache Center.  She kept trying to tell me I had HMO and needed pre-approval when my card said PPO, and I told her I have a PPO plan - anyway she tried to cancel my appt. after a month of waiting.  I almost went up there and knocked HER head against the wall a few times!   :o

Goadsby suggested that I get a Pituitary MRI with contrast, as well as the blood work.  He said that the blood tests often miss what the MRI might pick up - he is looking for adenomas, or tumors.  He stated that in the last 5 years or so more CH cases have been connected to not only Hypothalamus problems, but Pituitary adenomas.  
I am wondering if anyone here has had their Pituitary checked for tumors, and if there has been any connection if so??  

I'm going in a week or so for Another MRI - this time with contrast for my Pituitary, with another wait (another month? I hope not) to see Goadsby after to get results - he said I was welcome to return despite the Headache Center's policy to refer patients back to their GP after the appointment with their specialist.  He said CH patients are his specialty and he likes seeing us.  :)  I was glad because it was nice to have a knowledgeable HA Specialist!!!   :D  I saw another in the Bay Area and he told me at first "you're a young woman, CH is an old man's disease!"  um - ok it's hard to work with people who are a little dense.  So there are more cases of it in men than women - so what??  I was there to get treatment for mine.  Even he diagnosed it as CH after many tests.  Argh. He told me I shouldn't use a non-rebreather mask, gave me papers from the respiratory therapist at the sleep center where I got my Sleep Apnea Tests done stating I should get a something similar to a clustermask...? Bot don't use a non-rebreather??? HA   I'm scared of exactly how much he knows about CH now. :-/

Interesting! Found a couple of items of interest.
=========
Cephalalgia. 2007 Feb;27(2):173-6.
Typical cluster headache caused by granulomatous pituitary involvement.

Favier I, Haan J, van Duinen SG, Ferrari MD.

Department of Neurology, Leiden University Medical Centre, Leiden, the Netherlands. i.favier@lumc.nl

A young woman had typical cluster headache attacks and a pituitary mass lesion. The headache attacks resolved after transsphenoidal resection of the tumour, which was diagnosed as a granulomatous inflammation. The association between cluster headache and granulomatous enlargement of the pituitary gland has never been described before. This case reinforces the growing evidence that even in typical cases of cluster headache, neuroimaging is mandatory to exclude structural lesions.

Publication Types:
Case Reports

PMID: 17257239]
============
Brain. 2005 Aug;128(Pt 8):1921-30. Epub 2005 May 11.
The clinical characteristics of headache in patients with pituitary tumours.

Levy MJ, Matharu MS, Meeran K, Powell M, Goadsby PJ.

Headache Group, Institute of Neurology, Queen Square, London WC1N 3BG, UK.

The clinical characteristics of 84 patients with pituitary tumour who had troublesome headache were investigated. The patients presented with chronic (46%) and episodic (30%) migraine, short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT; 5%), cluster headache (4%), hemicrania continua (1%) and primary stabbing headache (27%). It was not possible to classify the headache according to International Headache Society diagnostic criteria in six cases (7%). Cavernous sinus invasion was present in the minority of presentations (21%), but was present in two of three patients with cluster headache. SUNCT-like headache was only seen in patients with acromegaly and prolactinoma. Hypophysectomy improved headache in 49% and exacerbated headache in 15% of cases. Somatostatin analogues improved acromegaly-associated headache in 64% of cases, although rebound headache was described in three patients. Dopamine agonists improved headache in 25% and exacerbated headache in 21% of cases. In certain cases, severe exacerbations in headache were observed with dopamine agonists. Headache appears to be a significant problem in pituitary disease and is associated with a range of headache phenotypes. The presenting phenotype is likely to be governed by a combination of factors, including tumour activity, relationship to the cavernous sinus and patient predisposition to headache. A proposed modification of the current classification of pituitary-associated headache is given.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 15888539

Yeah - it was an interesting topic to read into.  I have both Full Text versions if you like.  Those two are all I found on the subject, however - and I just thought I'd throw it out there if anyone has been tested!!  

I was not aware of how many things the pituitary played into - stress, blood pressure, metabolism, sex organ functions, thyroid, temperature regulation - many of these things are affected by 1) the CH itself or 2) the meds we take to try to control the CH!!      

Definitely interesting...

I would be interested to see full text, please, if it is possible.

The article in Brain is free full text: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Edit to add: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Incomplete literature collection about secondary CH causes:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

- click on the PMID / DOI links on that page to read the abstracts.


Published this month:
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Curr Opin Neurol. 2009 Jun;22(3):247-53.
Neuroimaging in trigeminal autonomic cephalgias: when, how, and of what?

Wilbrink LA, Ferrari MD, Kruit MC, Haan J.

Department of Neurology, Leiden University Medical Centre, Leiden, The Netherlands.

PURPOSE OF REVIEW: Trigeminal autonomic cephalgias (TACs) are characterized by frequent, short-lasting headache attacks with ipsilateral facial autonomic features. They include cluster headache, paroxysmal hemicrania, and short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing. The pathogenesis of TACs is largely unknown, but many case reports in the literature suggest that TACs are secondary to structural lesions. Thus, the question arises whether TAC patients should undergo neuroimaging. Here, we review the recent literature on secondary TACs and attempt to formulate guidelines for neuroimaging. RECENT FINDINGS: Recently, we published two reviews of, in total, 33 case reports of patients with a secondary TAC or TAC-like syndrome. Since then, 23 additional cases have been published. Here, we provide a summary of these 56 case reports. TACs were found to be associated with a wide range of both intracranial and extracranial neurovascular and structural lesions. We could not identify a 'typical' clinical warning profile for secondary TACs as these patients could present with clinical features that are entirely characteristic of a TAC, including alternating attack and attack-free periods, and excellent response to TAC-specific treatments. SUMMARY: Even clinically typical TACs can be caused by structural lesions. There are no 'typical' warning signs or symptoms. Neuroimaging should be considered in all patients with TAC or TAC-like syndromes, notably in those with atypical presentation. Depending on the degree of suspicion, additional imaging should be considered assessing intracranial and cervical vasculature, and the sellar and paranasal region.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 19434790 [PubMed - in process]

Good Morning!...

I have to tell you I am new to this site..I have been supporting my
husband now since we have been together 6mo's and I true
respect for all cluster headache suffers my goodness...anyway
Cliff my husband had talked to me about a spot supposedly seen
near his pituitary gland and had said that the neuraligist had said
nothing to him about it but another Dr did...however it has never
been discussed since then....apparently its been like 2yrs since
this was seen but nothing done.  I want to thank you for the info
on it.  As matter of fact I had just yesterday brought it to the
attn of the nurse in his Dr's office and she is having the Dr
check it out!  I also took the liberty of giving this site to the
Dr for her to look at.  I truly am thankful for this site and its
explanations of what my husband is going thru.

Cathy  

Hi Cathy!

Welcome to CH.com!   Thanks for being there for your hubby!  

Jeannie

Another supporter! [smiley=hug.gif] You people are golden. My wife found this site for me many years and totally changed my view towards the beast. Now get his hiney on the board here so we can make sure he's getting the best and latest! ;)

Joe

Val,

PM Catlind.  If I remember correctly she has issues with a tumor that is affecting her CH.  

Jerry

Callico wrote:
Quote:

PM Catlind.  If I remember correctly she has issues with a tumor that is affecting her CH.

You got it Jerry!!  Thanks for the heads-up!!   ;)

Val