I've had my first appointment with a neurologist today and after explaining my headaches were every day up to 4 times a day for 2 months with the usual symptoms, I get told I'm too young to have CH because it's a middle age thing! Really???!!!!

The neuro thinks it's migraines (because i'm only 26!) and the CH symptoms I experience are because I read about it. I almost pointed out it's a good job I didn't read about amputees or I might lose a limb! Maybe I should be reading about winning the lottery right now! I understand patients must turn up for check ups all the time after self diagnosis but I found CH info 3 weeks into my first cycle and could have written the article myself.

I have read about people suffering and not getting a diagnosis for years and thought my research and helpful (though not knowledgable) GP would move things forward a bit quicker. I'm so disappointed I seem to be back at the start now.

Sorry about that, I needed a rant and know you guys understand better than anyone.

Many have been diagnosed in their teens, some as young as 2 years old. Is this guy a headache specialist, or the more generic variety of neurologist?

He was a generic neurologist. The first referral by my GP. I think I will ask for another in the morning. I know the headache specialists are in London but that's quite a trek for me. Something to look at maybe. Don't know whether I should wait for another cycle as I've only had one, a few months ago. Just thought I might be lucky and get somewhere  >:(

Sadly, you have met a doctor educated in the late 70's early 80's. Please tell him I said that! ;D

Only middle aged men, taller then average, lionesque features, orange peeled skin got CH. EVERYONE ELSE GOT MIGRAINS. Saved them having to do any serious thinking. Which statistically means about 60-70% of the people on this board are faking their CH for attention, especially the females here, EVERYONE knows they don't get CH, only migrains! ;D

Time for a new doc, this one will tell you to lose weight, stop smoking, reduce stress, do life style changes, not eat chocolate or chinese food, NONE of which will help your CH. Better off doing welders oxygen or the clusterbusters.com route.

Sorry, you did NOT get the winning lotto ticket with  that clown! >:(

Joe

I started at 18 and im 44 now so middle aged is a load of b***cks my worst time with on meds at all was in my twenties, diagnosed this year by the way TBH i've learn it cope with them, dont know how but i did.
maybe for the best i i've just discovered sumatriptan only had a couple of shots and blimey they work everytime, on more rolling round in agony :)

My GP gave me sumatriptan as an experiment and it is a godsend! Although looking back at my diary I'm starting to think it prolonged my cycle or at least increased the frequency but I don't think I could have coped without. Difficult to tell really. Always keep it with me just in case!

I think you're right Joe, clown about sums him up!

I am also of the opinion imitrex may extend cycles, doesn't stop me from injecting when I know I'm about to get creamed. We pick our poisons.... :-/

JOe

I one hundert percent agree with the statements above.
Your doc is a dumbass. And, you can tell him I said so.

My son was diagnosed at 16, thank god that I knew what they were and had been through the diagnostic hell myself. I was also thankful that I happened to have a great Doc that knows that I know what I am talking about and our trust runs both ways.

Good luck

19.

I was so much older then...I'm way older than that now.

Steve G

I remember my 26th year well...it's when I became a clusterhead....

Got a kick and a chuckle out of Bob's "dumbass doc" comment....dumbass being a phrase from my youth...don't hear it much anymore.

Guess I've been fortunate....none of the docs I've visited for this "problem" were dumbasses...they just didn't know what to do for me. A dumbass is someone unwilling to LEARN...that's arrogant, and unacceptable in this profession....RUN away!

I only got to beneficial treatment when I found a HEADACHE SPECIALIST neuro...the rest are just guessing....

Best,

Jon

A dumbass is someone unwilling to LEARN...that's arrogant, and unacceptable in this profession....RUN away!

You've said a mouthful there Jon, I don't expect anyone to know everything about anything. The person unwilling to be open minded enough to admit they don't know everything...they're the ones that scare me! :-/

Joe

Hmmm... Last time I checked CH is not necessarily age discriminatory.  There is at least one woman here with (if memory serves) a 5 year old with CH!!

Ditch the pomp-ass know it all sudo doc and get a new neuro that actually knows his $hit or seek out a headache specialist for your own sanity.

Sorry if that sounded harsh did a bit of venting myself there, this kind of crap from a Doctor irritates me to no end!  >:(

I hope you find a good Doc soon and Many PF days and nights too!!

I was 23 and most of this crowd was younger.

Find another doctor but be sure to rough up this rectal aperture.

Charlie

Shoot.  I was 13 when they started, and I was first diagnosed at 16.

I agree with Jon.

Best,

George

My son was diagnosed with ECH at 12 by our family Doc. Became chronic at 19. Your Neuro is full of s**t.

What really annoys me is the god complex of these guys! No person is infallible and they can't let us normal people help with OUR diagnosis. Plus how hard is it to find info these days? I found a wealth of good advice and even medical studies online. 2 minutes on t'internet and I could be on my way to a proper diagnosis. Instead I get BS!

What a croc!!  I was in my late teens when they started, finally diagnosed in 2001, some 14yrs later!!  Even then it was a struggle to get the diagnosis cos I don't have a penis  ::)

Good on you for finding the information needed to help yourself, now you just need to get a good specialist on board.   

Wishin you all the best,

Kate

I had my first cycles in my late teens but have been lucky enough to have had a 20 year break, only recently starting up again. My neuro, who doesn't seem to know much about ch, hasn't actually diagnosed ch yet, mainly because I'm female, bur did start me on verap and oxygen, whcih is a godsend. I will be taking her copies of the articles that Ihave been directed to by the very helpful members of this community, and if that doesn't help, I'm going to find another neuro. Perhaps you should do the same? Good luck

Had them in college(late teens and early 20's) I didn't get diagnosed until 30


stevegeebe wrote on Nov 24^th, 2010 at 7:19pm:

19. I was so much older then...I'm way older than that now. Steve G

GREAT SONG!!!!

I'm 17 and I wish I was too young for CH.  I'd take migraines hands down.  Luckily I don't have too choose and get both  ;D

i started when i wad 11. your nuero is a dipstic

edited to add: im 34 and i still have never been officially diagnosed with ch.

I started with them in my teens, was diagnosed at 23.

You need a new Dr.  Please inform him because he obviously cannot read that M.D. does not confer Godhead on him, merely the opportunity to practice.  That practicing is to consist of continuing to LEARN.  At this point I know more about CH than does he, and most of those you will find on thins board do as well.  We just cannot "practice" medicine as can he, although we can steer you to much better and safer remedies than he will do at this point even if he does actually discover what CH is.

May I recommend Dr Mathurin?  I would suggest you start trying for an appointment now as he is tremendously in demand.  He is however one of the foremost authorities on CH in the world.  I had the privilege of meeting him at the OUCH convention in Atlanta last summer when he came over an spoke to us at his own expense.  That is the level of care he has for us and the cause of CH. 

Jerry

Mine started when I was about 14. At the time, nobody understood what I was going through. At 20 or so I was prescribed my first prescription for it - Butalbital....more or less a sleeping pill. I was finally diagnosed when I was 38. At that time I was told they would go away before I was 50 but at 48 or so they became chronic.


Good Luck!

Hi Ian,

Started at 19 myself and it took 10 to 12 years to be diagnosed correctly.  When that neuro showed me an article on CH, I swear I could have written it myself.  I was a "textbook" case.

It was only after discovering this site that I could finally start to treat myself correctly.

Find another doc.  Quickly.  And hang in there!!!

miCHel

A survey of 12,000+ cluster suffers says that 72 percent started before the age of 30.