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        Cluster Headache Help and Support >> Cluster Headache Specific >> Diagnosis from Doctors
        
(Message started by: elguru on Oct 20^th, 2007, 10:32pm)

Title: Diagnosis from Doctors
Post by elguru on Oct 20^th, 2007, 10:32pm

I've been told by many doctors that we should not try and diagnose ourselves when we go to the doctors so as to not lead them to the same conclusion..therefore I shouldnt go in telling a doctor that I have cluster headaches or migraines so that they don't diagnose me with that just because I said so. Rather I should explain my symptoms and have them diagnose the exact problem....i.e tell them that I have headaches...
However, for the past 4 yrs I have been diagnosed with having migraines, but when I do my research, I am sure I have CH, and not migraines.
How should I approach the doctor/what should I tell them, so that I feel they are giving an accurate diagnosis? Anybody have any thoughts or experiences...besides just changing the doc?

Title: Re: Diagnosis from Doctors
Post by Annette on Oct 21^st, 2007, 12:18am

on 10/20/07 at 22:32:20, elguru wrote:

..therefore I shouldnt go in telling a doctor that I have cluster headaches or migraines so that they don't diagnose me with that just because I said so.

An accurate diagnosis can only be made from the history, the presenting symptoms, results of examination and tests and clinical experiences. No doctor should make a diagnosis just because the patient said so.

You can go to the OUCH website for a list of the specialists who are experienced in diagnosing and treating headaches. They should be able to help you confirm whether you have migraine or clusterheadache.

A detailed headache diary will also help.

Wishing you all the best and I hope you dont have CH.

Title: Re: Diagnosis from Doctors
Post by MR_FLOOR on Oct 21^st, 2007, 3:27am

Hi Elguru,

Like Annette said the, key is to find a nero that specializes in headaches. What you say should not affect your diagnoses if you have a good doctor. Well anyway good luck finding that doctor and keep reading go to the doctor with as much ammunition as possible. Remember knowledge is power.

Dave

Title: Re: Diagnosis from Doctors
Post by BarbaraD on Oct 21^st, 2007, 6:38am

Elguru,
I have to disagree with you on this one (and Annette may disagree with me also and that's ok - she knows I love her dearly), but my old GP and I had a running joke about me just coming to him for a second opinion.

We know our bodies better than anyone and we can usually figure out what's wrong with us BEFORE we go to the doctor. I have a wonderful neuro who says, "If you listen to your patients long enough, they'll tell you what's wrong with them - and if you listen a little longer, they'll tell you what to do about it."

If you have all the "symptons" of CH, there's nothing wrong with going armed with them to your neuro and "telling" him/her, "Here's my symptoms, they sound like CH - what do you think?" If he/she hem/haws around ASK how many CH patients they've treated cause they might just not know anything about CH and then you're not going to get the treatment you need and you're wasting your time and money.

Read the horror stories on this site and see how many people here have gone years and years without the proper diagnosis for CH because doctors didn't know anything about CH and weren't willing to learn. Sometimes you just have to take over and TEACH them.

My 2 cents...

Hugs BD

Title: Re: Diagnosis from Doctors
Post by Beastfodder on Oct 21^st, 2007, 10:22am

The more info you have the better all round for you, the doc and any specialist.

Start a headache diary - when you get them, how long, where the pain is and what type of pain it is, specific triggers before they start etc. (and keep a back-up when your hard disk goes bang).

All the best

Title: Re: Diagnosis from Doctors
Post by Kevin_M on Oct 21^st, 2007, 10:52am

on 10/20/07 at 22:32:20, elguru wrote:

How should I approach the doctor/what should I tell them, so that I feel they are giving an accurate diagnosis

Just summarizing so far here, all posts above made mention of bringing info, documented best.

on 10/21/07 at 00:18:29, Annette wrote:

An accurate diagnosis can only be made from the history, the presenting symptoms, results of examination and tests and clinical experiences.

A detailed headache diary will also help.

on 10/21/07 at 03:27:14, MR_FLOOR wrote:

go to the doctor with as much ammunition as possible. Remember knowledge is power.

on 10/21/07 at 06:38:31, BarbaraD wrote:

If you have all the "symptons" of CH, there's nothing wrong with going armed with them to your neuro and "telling" him/her, "Here's my symptoms, they sound like CH - what do you think?"

on 10/21/07 at 10:22:10, Beastfodder wrote:

I think there is format for a headache log over at the OUCH site, click the link over on the left. Somebody will correct me if I'm wrong.

Next mentioned previously also is taking this info to a headache doc that has dealt with CH. From a good log, CH should make itself pretty suspicious, then he can start eliminating other possibilities.

Treatment is another whole world. Diagnosis by a doctor may not mean correct treatment by him.

Good luck.

Title: Re: Diagnosis from Doctors
Post by Annette on Oct 21^st, 2007, 10:56am

on 10/21/07 at 06:38:31, BarbaraD wrote:

Barbara, I actually totally agree with you on this one. It works just like that if you know the doctor very well and there is trust there on both sides. I do have patients like that too. One particular lady has inflammatory bowel disease and she would come in telling me she thinks she needs to restart prednisone and/or antibiotics again because of flaring up of symptoms, and she had been spot on each and every time. But then she has lived with the condition for more than 20 years and I had been her GP for the last 10, so there is a very deep level of trust between the two of us.

I just had the impression that Elguru hasnt had that level of trust and understanding with the doctors yet. Maybe I am wrong but that was just the impression I got.

Its also important that if the doctor listens to you and makes the same diagnosis, it should be because either the doctor has enough experience with your conditions to agree with your suggestion, or because the doctor had bothered to learn about it and then gain the knowledge necessary to arrive at the same diagnosis.

If you go to see a new doctor for the first time, who doesnt seem to know much about the condition you are talking about and then agrees on the spot with you about a diagnosis, I would still say change doctor! :P

Elguru

Its fine for you to be upfront and ask the doctors you see whether they have had experience treating headaches in general and clusterheadache in particular and check to see what are their approach. If they say they know CH but wont prescribe oxygen at high flow rate then be very wary !

Thats why its best to see the ones recommended by OUCH.com, as you can be sure that they have the experience necessary to make an accurate diagnosis.

Best of luck and I still hope that you dont have CH.

Please let us know how you go.

Title: Re: Diagnosis from Doctors
Post by Bob_Johnson on Oct 21^st, 2007, 11:25am

We have had many complaints about M.D.s not Dx us properly and, therefore, not treating properly. This condition reflects the slight training docs receive in headache. This being the case, we have to either search for someone with experience or, if we are fortunate, have a relationship in which our doc is open to receiving the kinds of information we can offer.
--------------
Headache. 2000 Oct;40(9):730-5.

The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.

Klapper JA, Klapper A, Voss T.

Colorado Neurology and Headache Center, Denver 80218, USA.

OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.

PMID: 11091291

Title: Re: Diagnosis from Doctors
Post by pattik on Oct 21^st, 2007, 12:04pm

Elguru,
Yes, a detailed headache diary is quite helpful, no matter what type of headache you may have. Pay special attention to any autonomic symptoms you experience. Sometimes self-diagnosis is the only way to help yourself in the short term while you're waiting to see a specialist. As Barbara said, we know ourselves and symptoms better than anyone. Thanks to this site and others, you can gather a lot of information, print it out, and take it to your doctor. The more you inform yourself, the more seriously you will be taken. Here is an informative link from Dr. Goadsby which may help: "The signature feature of CH is
the association with cranial autonomic symptoms, and it is extremely unusual for these not to be reported. The International Headache Society (IHS) diagnostic criteria3 require the cluster attacks to be accompanied by at least one of the following, which have to be present on the pain side: conjunctival injection, lacrimation, miosis, ptosis, eyelid oedema, rhinorrhoea, restlessness or agitation, nasal blockage and forehead or facial sweating"
http://www.escriber.com/Assets/EscriberDownloads/Images/Head.pdf

PF wishes,
Patti

Title: Re: Diagnosis from Doctors
Post by elguru on Oct 24^th, 2007, 2:10pm

Thats all great advice...I really appreciate the support and comments...
I have to find a good neurologist in the NYC area...
some of the comments are indeed right...I have had a hard time building trust with physicians, expecially if all they are capable of doing is prescribing heavy doses of ibuprofen.
I am assuming that this is the general path of diagnosis, especially for something like CH. Once I am able to find a knowledgeable physician, I will be able to manage the headaches better I think.
Once again, thanks for the support and advice...I'll def keep it in mind, look forward to sharing my experience with you.