I was reading other posts and saw that in rare cases that clusters are a symptom from something else such as a pituitary tumor "or disease in the carotid arterie."  I don't know about either of them, so bear with me please.  My husband was found to have an obstuction/blood clot in his subclavical area on the right side...the blood that normally flows into his right arm is blocked and his body has compensated by re-directing 1 of the 3 main blood flows to the head to his right arm (Amazing I know).  It is offically named subclavian steal syndrome.  A lot of times misspelled as STEEL but it is b/c it steals blood from one area to give to another.  Doc won't fix b/c he is too young to have a stent placed and the Neurosurgeon is "Definite" that this has nothing to do with his clusters b/c of the timing..says he'd have the headaches all the time not just in the Fall.   What is your opinion??  I will have to look up pitutary tumors and diseases of the carotid artieries.   Does anyone else have something strange like Subclavian Steal Syndorme?? 

Thanks again
Desiree

dm1girl wrote on Nov 30^th, 2009 at 9:22pm:

I was reading other posts and saw that in rare cases that clusters are a symptom from something else such as a pituitary tumor "or disease in the carotid arterie."  Thanks again Desiree

I have to say I have never heard of such a thing makes me wonder because I do have a growth on my pituitary gland anyone one have more info on this???????? hit me back :-?

This is one of the reasons competent Neurologists want to see head/neck images before finalizing a DX of CH.

Mine wanted an MRI to look for lesions/biomass, structural deformities and a baseline of the meninges condition.

I wasn't responding well to meds, so they wanted to then see an MRA to get a close look at vascular components including looking for blockage in the carotid artery.

After this was all finished, the Doc told me that he had good news and bad news. The good news was that the results of the images were exceptionally good.

The bad news was: "You have Cluster headaches."

Marc

Marc wrote on Dec 2^nd, 2009 at 9:13pm:

This is one of the reasons competent Neurologists want to see head/neck images before finalizing a DX of CH. Yup...competent doctoring...and NOT CYA either After this was all finished, the Doc told me that he had good news and bad news. The good news was that the results of the images were exceptionally good. The bad news was: "You have Cluster headaches." THAT sentence caused me to involuntarily suck in my breath...bad news...truly...indeed... Marc

I am one of those that has a pituitary cyst/tumor.  Last word was that it was definitely the reason the 60+ different treatments we have tried have not succeeded.

I have 6 or 7 medical papers were published on it, but I don't have any links to them online.  I will try to find them and post them.

Another case that a secondary illness of neurological nature stopped clusters is Moya Moya Disease - our very own DJ, founder of this site, suffered for years with CH, then when he was dx with Moya Moya, and had the surgery to correct the occluded carotid artery, his clusters went away. 

So there may some anecdotal evidence out there that there are primary neurological conditions that can a) mimic CH pefectly, or b) cause clusters as a secondary headache disorder, previously defined as ONLY a primary TAC (trigeminal autonomic cephalgia) headache.

The best thing you can do is to find a very competent headache specialist or neuro that is very up to date on cutting edge research.

Cat 

This is one example of reports which indicate that clusters may arise from other disorders.
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Title: "Cluster Headache Mimics"--useful article. Post by Bob_Johnson on Jul 30th, 2004, 2:04pm
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This is an important article to obtain and take to your doctor if you are having a difficult time getting a diagnosis of the type of headache problem you have and/or finding medications which give consistent relief for cluster. It is a technically difficult read for someone not educated in medicine. Its value is in providing case studies about uncommon conditions which appear to be cluster headache but which are, in fact, not.

Broad signs which may signal that the problem being treated is a cluster mimic are: having made a diagnosis of cluster, the standard medications do not work OR they work for an episode or two and then stop being effective. Second, if the diagnostic signs differ in important ways from the standard signs for cluster (and this is a subtle issue which requires a physician with sophistication).

One of the striking findings reported: Cluster can arise from head trauma as long as 30-years after the trauma!

Some conditions which can mimic primary cluster headache:

Infections
     Aspergillus
     Inflammatory disorders
     Wegener's granulomatosis
     Orbital myositis
     Plasmacytoma
     Multiple sclerosis
Head trauma
Vascular abnormalities
     Arterial dissections
     Arteriovenous malformations
Neoplasms
     Pituitary tumors
     Metastases
Other trigeminal autonomic cephalgias: SUNCT syndrome; Paroxysmal hemacrania; Hypnic headache

"Cluster Headache Mimics", Dale M. Carter, M.D.. CURRENT PAIN AND HEADACHE REPORTS, 2004, 8:133-139.

One case is described at Dr. Sewell's blog START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

So glad this was posted...I have chronic CH for a little over two years now. I was diagnosed about a year and a half ago..Maybe a year ago I started to get "weird" sensations in my neck and I can feel my carotid artery pulsate for lack of a better term. But I was just starting sumatriptan first in pill form and then in injection. So I thought it was from that...You know that weird sensation it can give especially when you first start to use it.

Anyway for the first time since they started i am getting a little break. I didn't think this happened with Chronics...But knowing that I am having this break I haven't taken sumatriptans in a weeks and I still feel the sensation. I also took myself off of the topamax and verapamil months ago because it wasn't working..I am nothing but melatonin now..

I will definitely be reaching out to my doctor to explain my symptoms and let you know if something comes from it..

Thanks again for the post!

I see that MRIs are a fairly standard test from neurologists. I have already had a negative CT scan, ordered by my new primary doctor. When I go to the neurologist, do you think he/she will also request an MRI?

MichelleP12 wrote on Dec 15^th, 2009 at 4:08pm:

When I go to the neurologist, do you think he/she will also request an MRI?

Not sure anyone here would really be able to answer that as we can't know what your doctor is thinking.

I have been Dx'ed with Clusters for the last 11 years and was misdiagnosed for almost twenty before that.  I'm just tonight, having my first MRI of my head.  Wouldn't it be something to find something to correct and make all this a thing of the past?  Hey, I can hope, right?

Jeannie