Click this link to read a post I like on the clusterheadaches.com message board...

jon019

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Self diagnosis....
Oct 25^th, 2016 at 1:25am

If there is one tenet we abide by here...it IS....do NOT self diagnose. This is a public forum...anybody can say most anything with plausibility...well...except Danny boy. So...it is wise advice....

On the other hand....countless times you will see that we (i.e clusterheads) frequently know more about our condition than the docs. Not surprising...we are EXPERT patients...with an intimate knowledge of our bodies...and most docs...EVEN Neurologists get shitall training in "headache"....let alone cluster. For example, because of the focusing tendency of ch, I knew I had cancer seconds after feeling a lump in my neck...will not bore with the details...but I KNEW....while the docs futzed around for 6 weeks.

The article I attach is from a Neurology journal...which I subscribe to for reasons other than ch...as they rarely address "headache". It REMARKABLY describes the journey MANY here have trod seeking medical treatment for their condition...be it ch or "other" neurological condition....without the support of the medical profession. It confirmed and affirmed the journey many of us have faced...so I thought it would be of interest.

I am NOT advising or recommending self diagnosis...which entails a fool for a patient....I am
advising recognition that ya better learn all you can...and be prepared to advocate for your yourself and position/condition...cuz otherwise....they'll bury you and say....."oh, if we only knew".....

Best

Jon

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« Last Edit: Oct 25^th, 2016 at 1:29am by jon019 »

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Mike NZ

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Re: Self diagnosis....
Reply #1 - Oct 25^th, 2016 at 2:02am

A really interesting article Jon, thank you for posting it.

Sometimes it is easy do to a diagnosis, like when you slip with a knife and cut a finger whilst cooking. Anyone can diagnose that one.

But for most stuff, the most we can do is to say that the symptoms they observe seem to be consistent with the symptoms associated with a particular illness / disease / injury.

Making that connection between symptoms and a definitive diagnosis is the hard bit, where you tend to need the combination of the appropriate knowledge and experience.

Looking at the standard IHS diagnostic criteria for CH - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Quote:

A. At least five attacks fulfilling criteria B-D
B. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 min (when untreated)1
C. Either or both of the following:

1. at least one of the following symptoms or signs, ipsilateral to the headache:

      a) conjunctival injection and/or lacrimation
      b) nasal congestion and/or rhinorrhoea
      c) eyelid oedema
      d) forehead and facial sweating
      e) forehead and facial flushing
      f) sensation of fullness in the ear
      g) miosis and/or ptosis

2. a sense of restlessness or agitation

D. Attacks have a frequency between one every other day and 8 per day for more than half of the time when the disorder is active
E. Not better accounted for by another ICHD-3 diagnosis.

We can tick off all the points A to D (possibly after having looked up some of the meanings of the list in C), however the experience and knowledge bit comes into play for E.

Mind you, for many of the medical professionals that so many of us have come across just being able to match the correct symptoms are beyond their knowledge, which is why we always suggest a headache specialist. For example there isn't anywhere in the definition that states that females can't get CH, which too many doctors don't understand.

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maz

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Re: Self diagnosis....
Reply #2 - Oct 25^th, 2016 at 1:05pm

I have to say I self diagnosed, after I had found this site by sheer chance. I had alread seen so many doctors and had so many procedures, and so many diferent diagnoses, I was in dispair. I knew none of the diagnoses was correct, because none of the treatments had worked.
Then I asked to be referred to a neuro, who said it can't be CH because I'm a woman. By this time I had spent many hours here, and I was almost certain it was CH. Finally, I saw a different neuro who confirmed it. And it must be correct, because the meds work. But I would still be floundering in the dark if I had not pointed them in the right direction in the first place.
Sometimes, when no one is helping you, you have to help yourself.

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jon019

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Re: Self diagnosis....
Reply #3 - Oct 25^th, 2016 at 6:39pm

maz wrote on Oct 25^th, 2016 at 1:05pm:

. But I would still be floundering in the dark if I had not pointed them in the right direction in the first place.
Sometimes, when no one is helping you, you have to help yourself.

...absolutely maz....I know ya knew...just like the 8 docs I saw before finding one who did DIDN'T...
so I'm saying learn EVERYTHING you can so as to advocate for yourself...aint nobody gonna do it
for you.....lead the doc by the nose if ya hafta...but get that "official" diagnosis...

...personally I was always a little annoyed by the standard reply here.....for years now...about the
dangers of self-diagnosis...CUZ I KNEW MORE THAN MOST DOCS re CH...most of us do...UNTIL:

I was presented with a symptomology by a friend re HIS friend that was TEXTBOOK CH...and I
said that is what it SEEMS to be...but get thee to a neurologist first before you self treat (I
refrained from discussing O2, caffeine, meds, etc) to rule out other possible etiologies.

ch.com literally saved that man's life...because of the caution I learned here. He went to a neuro
...got an MRI or CT scan....and they found a brain tumor, operated immediately and he's fine...if
he had delayed to try ch treatment measures...he'd be dead..............

Best

Jon

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« Last Edit: Oct 25^th, 2016 at 8:48pm by jon019 »

The LARGE print giveth....and the small print taketh away. Tom Waits

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Self diagnosis.... Reply #4 - Oct 26^th, 2016 at 1:59am Whilst most people who come here with CH symptoms do have CH, over the last few years I remember a few who had other issues despite having "textbook" CH symptoms including: Someone with a bleed on their brain Several with brain tumors Someone with an eye issue Caution has probably saved a few people their life.
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Linda_Howell

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Re: Self diagnosis....
Reply #5 - Nov 5^th, 2016 at 8:49pm

Jon,

I agree with you in principal. However:

Before I found this site in 1998, I'd already had 12 years of this pain. I DID diagnosis myself with CH. BUT...then I took what I already knew to the best specialist Dr. Lee Kudrow in So. Calif. who took sonograms, many, many tests and then came back with what I already knew.

It's o.k. to diagnosis oneself as long as you have a doctor to verify it with MRI, CAT scans as well as a very good work-up.

Love ya Jon.

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Hurt people.....hurt people. Think about it.

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AussieBrian

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CH - It's all in your
head!

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Re: Self diagnosis....
Reply #6 - Nov 5^th, 2016 at 10:04pm

Mike NZ wrote on Oct 26^th, 2016 at 1:59am:

Whilst most people who come here with CH symptoms do have CH, over the last few years I remember a few who had other issues despite having "textbook" CH symptoms...

Have to agree with you, Mike. My symptoms are so close to classic CH it was years and years before I realised I was also sufferering another cluster-LIKE syndrome as well.

Diagnosed it myself, two neurologists have confirmed it, and life is so much easier now.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Self diagnosis.... Reply #7 - Nov 6^th, 2016 at 12:10am And that's why its always in your best interest to seek out a Headache Specialist for a confirmed diagnosis! Hoppy
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jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: Self diagnosis.... Reply #8 - Nov 6^th, 2016 at 3:54am ......abide..................
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purpleydog

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Re: Self diagnosis....
Reply #9 - Nov 11^th, 2016 at 1:40pm

Hey Jon,

I agree that it's extremely important to get a diagnosis from a doc or preferably a good neuro. But I think another important thing is to not SELF TREAT.

I already had a great neuro from dealing with other headache issues, and he thought I had CH before I did. When I finally went in with my symptoms, he agreed, and he treated me. Also, I would bring him treatments others had tried here on CH.com that worked, and he wrote me a script as needed after doing some quick research (thanks E-Double Wink

).

I recently went in due to complications that were happening while getting hit, and he had to do a complete full exam and imaging studies on me. Turns out I had another unrelated to CH issue, but very important that it got caught.

With all the information and dis-information on the internet, especially now, it's more important than ever to see a neuro for a correct headache dx. It's easy to get information from different websites, I've even looked at webmd and found incorrect info. It's easy to just take the info from one or two places, but we need to do more research than that. Please be careful.

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Prarnethir

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Re: Self diagnosis....
Reply #10 - Nov 19^th, 2016 at 1:22pm

regarding this part:
"Hey Jon

I agree that it's extremely important to get a diagnosis from a doc or preferably a good neuro. But I think another important thing is to not SELF TREAT. "

I do agree with this. sometimes self diagnosing and self treatment can be good and then everything's fine. but the thing is that even when you go to a doctor you can't be 100% sure that they would give you 100% sure diagnose and 100% good treatment (since you and the doc. are both humans which means that it might be hard sometimes). the point being that you stand much more chances to get both of them correctly if you go to a doctor. and sometimes... when you misdiagnose yourself or take wrong drugs it can end up quite badly... So I agree with others saying that you need to see a doctor..

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« Last Edit: Jan 19^th, 2017 at 9:50am by Prarnethir »

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