I am trying to get a diagnosis... and kind of have one. I saw a headache specialist and she said I have cluster headaches, but before I could be officially diagnosed I needed an MRI and an MRA.

This is financially difficult for me and I am reluctant.

How common is this? Is this par for the course. I expressed my financial difficulty and she suggested I should speak with the financial office. She said she would not order the test if she did not have reason to be worried.

I don't want to be stupid and ignore a needed test, but I also cannot afford this test and if it is just something they have everyone do just to make the diagnosis... then I might give pause.

I know every doctor is different, but I was wondering what your experience was.

The standard diagnostic criteria for diagnosing CH can be found at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Quote:

Diagnostic criteria: A.    At least 5 attacks fulfilling criteria B-D B.    Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated C.    Headache is accompanied by at least one of the following:         ipsilateral conjunctival injection and/or lacrimation         ipsilateral nasal congestion and/or rhinorrhoea         ipsilateral eyelid oedema         ipsilateral forehead and facial sweating         ipsilateral miosis and/or ptosis         a sense of restlessness or agitation D.    Attacks have a frequency from one every other day to 8 per day E.    Not attributed to another disorder

The last line is what makes it complex to diagnose CH and it is why the further diagnostic tests will have been requested.

It is very common for people to have an MRI and / or a CT scan as there are multiple issues that will show up using these techniques, e.g. cancers, that can result in the same symptoms as seen with CH. Although for most people these tests show up negative, there have been people who have posted here where the tests have found something. If the cause of the headaches is something like this then getting a timely diagnosis could be very, very important.

The MRA test isn't one I've seen mentioned here, but this is where the skills and experience of your headache specialist are important. They have examined you, taken a history and their experience is saying that these tests are required based on what they have learned. We cannot second guess how important the tests will be.

I've had a couple of MRIs and other scans over the years and always been happy that they've come back negative, meaning it's only CH and not something really serious or worse.

I truly wish you the best, and get the test if you possibly can.

It IS something they have everyone to make a diagnosis - that's the whole point.
There is no test or definative way to diagnose CH. Diagnosis is made by ruling out everything else and an MRI scan is part of that process. You have asked your doctor for a diagnosis but she can't give you one unless you let her do the necessary test.

If she diagnoses CH without checking for everything else, and then somewhere down the line it turns out to be bleeding on the brain or MS or you have a brain tumour, who would be to blame. And by then it may be too late.

I'm not sure what a CT scan is for but I had an MRA. I was so relieved to hear a negative result after years of terrifying uncertainty.

I'm not trying to scare you and I'm not suggesting for one minute that you have any thing nasty (nastier than CH that is), but you really should KNOW for sure.

I understand how difficult it can be, but to me, it's vital. I hope you can manage it.
Maz.

A few years ago a recommendaiton to have a brain scan
appeared in the medical literature. It seems to have disppeared in the last couple of years.

I suspect this shift occurred because so little was found to justify the  cost.

In addition, there has been a every growing list of diagnoses, some of which are rather serious, which mimic Cluster but which are not headache disorders. The range of these mimics involve the major systemof the body so that a head exam would not reveal them. See:

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

This situation reinforces the need to see a headche specialist, if at all possible. They are most likely to be aware of the complexity of getting good Dx.
=====
Since you are seeing a specialist, I'd ask what does an "official" diagnosis mean? Won't she treat you unless you get one? Is it a barrier to insurance coverage?

The reason that brain scans have disappeared is that they turned up so little that the cost wasn't justified.

Personally, I'd pitch to her: I'll accept the risk; treat me for Cluster without a scan and let's see....

If that doesn't work, have the Cluster-LIKE article (printed out) to give and add the observation that there are many misleading possibilities that also needed to be considered.

Great you were able to be seen and diagnosed by a headache specialist. Are you able to obtain prescription medication for Cluster Headaches or is treatment on hold until your MRI is completed?

Many of us CH'ers have taken MRI tests. Most of the time, nothing on an MRI shows up negatively.  As I understand it, the purpose of the MRI is to rule out anything else that may be more "sinister" such as blood clots, tumors, aneurysms, brain damage, etc. 

Considering this is a financial issue for you, my guess is you have no medical insurance?

I agree with Bob J wrote..."Personally, I'd pitch to her: I'll accept the risk; treat me for Cluster without a scan and let's see...."

Keep us updated... ;)

-Gregg in Las Vegas

maz wrote on Dec 10^th, 2014 at 4:25am:

I'm not sure what a CT scan is for

A CT scan (also known as a CAT scan) produces what is essentially a lower resolution version of what an MRI scan produces, so it is used to look for things like tumors and similar issues that could be causing CH symptoms.

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