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        Cluster Headache Help and Support >> Cluster Headache Specific >> Topamax/What qualifies as a diagnosis
        
(Message started by: Saffy on Sep 19^th, 2007, 5:50am)

Title: Topamax/What qualifies as a diagnosis
Post by Saffy on Sep 19^th, 2007, 5:50am

Hello again everyone.

I hope nobody reading this is suffering too much today :)

I was hoping to ask a bit of advice if possible as I get the impression there is a wealth of knowledge on the subject around here!!!

Firstly the good news, it looks as if Topamax and Dixarit together are helping me immensely and keeping me almost PF nearly all the time. I do realise that it will probably only last for so long but a break for however long is absolutely heaven sent.

The question about diagnosis is this:

My doctor thought it was CH many years ago in fairness to her. Then I saw a neuro a few months back. However he examined me thoroughly, advised I take Topamax and wrote to my doctor but did not tell me he was diagnosing that I had CH. He did not suggest I had an MRI . In fact when I asked he said that I did not need one that his examination and my history was enough.

I asked the doctor about an MRI she said there was absolutely no need whatever. I said does this mean I definately have CH, she said is the Topamax working, I said yes, she said it looks like it then doesn't it.

I simply ask because I notice alot of people talking of MRIs, if however the obvious fact that the prescription is working is sufficient proof of diagnosis I am happy as Larry!!! ;;D

Daspite the fact that it means that I've got CH >:(

Saffy

Title: Re: Topamax/What qualifies as a diagnosis
Post by E-Double on Sep 19^th, 2007, 5:57am

a medication working DOES NOT mean that a diagnosis is correct.

MRI's are used to rule out tumors, vascular issues and other more sinister possibilities.

Many meds work for many headache types.

Diganosis is based on presentation and history matching up to the criteria put forth by IHS.

Regardless......your having PF times so enjoy ;)

Title: Re: Topamax/What qualifies as a diagnosis
Post by BarbaraD on Sep 19^th, 2007, 6:07am

Saffy,

Not sure exactly what you're asking, but glad the topamax is working. It's been my miracle drug for years.

You didn't say how long you've had CH. Have you ever had an MRI? An MRI is mainly to rule out anything else. For CH it won't show up anything (except maybe a brain). But usually a doc will run one to rule out brain tumors etc.

My neuro has run MRIs over the years (every couple of years) just as a matter of course. Most of them do. When I was diagnosed they ran MRIs, PETscan, spinal tap and a bunch of other tests that I don't think had names, but were akin to vampires.... but they put me thru the mill before they came up with a diagnosis. Took a bunch of years before they hit on topamax -- you're lucky that you got some releif so soon

sorry you have to be here, but welcome to the funny farm.

Hugs BD

Title: Re: Topamax/What qualifies as a diagnosis
Post by Saffy on Sep 19^th, 2007, 7:04am

Thanks E Double and Barbara D,

What I am looking for really is should I be insisting on an MRI.

Here in Wales the NHS is not known for giving an aspirin if it doesn't have to !!!

However I don't wish to have any procedure that I don't require either and since both neuro and Dr have told me twice that it wasn't needed I decided to ask some people more likely to tell the truth/know the answer/I'd feel able to believe as they don't have an axe to grind!!!

If it really ought to be done to rule out other stuff I shall stamp my feet and insist, otherwise I shall sit back relax and enjoy the effects of the Topamax!

Oops sorry, quick modify, you asked how long, I started with episodic at about 13, gradually more and worsening, longer episodes last few years and now I assume chronic, I am 49 this year.

Saffy ;)

Title: Re: Topamax/What qualifies as a diagnosis
Post by Bob_Johnson on Sep 19^th, 2007, 8:23am

I suspect that more scans are done for protection of the physican than for clinical necessity.
--------
To scan or not to scan in headache
Some patients with primary headaches may need imaging

Some life threatening brain disorders present with secondary headache, where the headache is caused by the disease. A brain tumour, for example, is best diagnosed by brain imaging early in the course of the disease, which is essential for optimal management of this and other secondary headache disorders. However, brain tumours, as an example, account for less than 0.1% of the lifetime prevalence of headache.1 This contrasts with the fact that most headaches in the community are either associated with mild systemic infection or due to primary headache,1 where the headache is itself the disorder. Dissecting primary from secondary headache is the problem, since, by definition, primary headache does not need brain imaging because no disease process exists that leads to macroscopic change in general terms.

How does one dissect primary from secondary headache? This question can have only a clinical response since no controlled trials have been conducted to identify causes of secondary headache. In clinical practice we generally accept that the so called red flags of headache should trigger a search for secondary headache.2 Thus change in the pattern of headache; new onset of headache in people older than 50; onset of seizures or headache associated with systemic illness, including fever; personality change; or with symptoms suggestive of raised intracranial pressure, such as new onset headache in the early morning; or headache that is worsening with coughing, sneezing, or straining should each be viewed with concern. Acute onset of the worst headache of the patient's life should trigger immediate referral for consideration as a sentinel headache of an intracranial aneurysm. An abnormal neurological finding is a clear indication to investigate, unless the finding is longstanding.2 Fortunately most worsening of headache is probably longstanding primary headache going into a more troublesome period, which mercifully is not a marker of a life threatening problem.

BMJ 28 Aug 2004[Not complete article here.]
====================================================================================================
Imaging Strategies
For the vast majority of patients presenting with a headache, no imaging studies are necessary. It is estimated that only 1 in 250,000 headaches are secondary to a life-threatening condition compared with the 1 in 11 Americans who suffer from migraines.[3] The US Headache Consortium has recently offered guidelines for imaging.[4] Patients with an abnormal neurologic examination should be considered for imaging along with those presenting with an atypical headache. Magnetic resonance imaging (MRI) and computed tomography (CT) are the usual accepted methods of imaging. The Consortium has no evidence-based recommendation regarding the "relative sensitivity of MRI as compared with CT in the evaluation of migraine or other nonacute headache."[4] However, MRI is often preferred to look for suspected underlying structural abnormalities, such as tumors, while CT tends to be preferred for diagnosing subarachnoid hemorrhage.

Dr. Unger discussed headaches at the 2003 AAFP Scientific assembly and presented the following "comfort" and "danger" signs as guides for imaging or other additional testing.[5] Comfort signs that are less likely to be associated with a secondary or life-threatening headache include positive family history of migraine, headaches that are menstrually related, those preceded by typical aura, or those that are periodic and stable over time. The clinician should consider additional testing in the presence of any "headache danger signs:" "the worst headache of my life"; sudden onset of a severe "thunderclap" headache; new onset in a patient older than 50 years of age; fever, confusion, or neck stiffness; loss of consciousness or any focal neurologic finding; or any change in headache pattern, such as progressive headaches without any symptom-free intervals. Dr. Darlow also added that the need for reassurance, either for the patient or clinician, is a possible reason to screen.[6]

MEDSCAPE
==================

Title: Re: Topamax/What qualifies as a diagnosis
Post by Saffy on Sep 19^th, 2007, 8:57am

Thanks Bob,

Having read it twice the second time - quite - slowly, I shan't ask for the MRI.

Thanks again,

Saffy ;)

Title: Re: Topamax/What qualifies as a diagnosis
Post by billyjoe on Sep 19^th, 2007, 11:09am

I never had an MRI although my neuro offered one. A good neurological exam plus knowledge of CH symptoms makes a diagnosis fairly easy, in some cases. For us, the periodic nature of the headaches was a key indicator, plus positive reaction to the drugs.

Title: Re: Topamax/What qualifies as a diagnosis
Post by UN solved on Sep 19^th, 2007, 11:51am

A neuro can tell more than we think by giving a neurological exam. If he/she did a thorough exam, an MRI is probably not necessary. The fact that Topo is helping also helps him/her give a diagnosis.

I'd rather hear "You don't need an MRI" rather than "You do need an MRI" anyday :D

GNO GNEWS is Good GNEWS said Gary GNEWS ! :P

PF WISHES

UN solved

Title: Re: Topamax/What qualifies as a diagnosis
Post by BarbaraD on Sep 20^th, 2007, 7:31am

I agree that a lot of tests are really unnecessary these days (I think they're just routine to cover the doc's rear and give the labs something to charge to the ins companies - may be why ins is so high).

Had a GP back years ago who looked at me and told me I was pregnant. I told him he was crazy and that I had a virus. He just grinned and told me we could kill a rabbit (some of you younguns don't even know about that test - but we didn't have home pregnancy tests back then) but if it was a girl we'd just name her Vira. It was a boy and that old doc still calls him "Little Virus". - Point -- sometimes the docs KNOW without the tests. We never did kill that rabbit. ;;D

If the topamax is working -- enjoy the PF time.

Hugs BD

Title: Re: Topamax/What qualifies as a diagnosis
Post by southwalessunshine on Sep 20^th, 2007, 8:18am

I know the feeling Saffy. I'm in Wales too and wasn't ofered an MRI, prevents, 02. I had to fight to get anything. The neuro told me I had CH but wrote to my GP that I have a migraine condition. Hence my application for DLA being turned down. I'm off to see his graciousness again on Oct 2nd and am going heavily armed for a proper diagnosis. I know I have CH, as I've researched and spoken at length with my GP, and I'm hoping to get proper meds this time. i'm taking no prisoners. Which hospital did you get your diagnosis? Wonder if we have the same Neuro?
Anyway, I'm hoping to go on Topomax when I see him and hope I get PF days like you. Congrats.

Title: Re: Topamax/What qualifies as a diagnosis
Post by Saffy on Sep 21^st, 2007, 4:49am

Hi southwalessunshine,

I went to Nevill Hall and saw a man in a very expensive suit! Saville Row I expect. Didn't like him at 20 paces but that was OK he liked himself well enough for both of us. ::)

Having said all that I think he knows a thing or two but then again thinks he is the font of ALL knowledge.

I can't complain too much I am pretty much PF although I realise it might not last it is a bit like having a holiday of a lifetime!!!!!!!!!!! At the moment and I love it.

Good luck with your appointment.

Piece of advice.

Write a numbered list.

Ask every question on it.

Do NOT be put off asking them.

Cross them off as they are answered.

If he evades the question, make sure you notice because he will, just smile nicely and ask it again, you will enjoy that bit I did, it made him wriggle, not dignified for a man with such a nice quality suit!!!

PLEASE PM and tell me how it went.

Saffy ;;D