"Went off to see the neuro..." (whistles, to the tune of Off to see the Wizard)

Saw my neuro yesterday. Have convinced her to write a letter to my O2 supplier for 10l/min and a non-rebreathing mask  - previously she requested 4l/min by nasal cannula - (thanks, Bob, for directing me to the articles that said nasal cannula not effective - very helpful!). Fortunately, the supplier knows more about ch than the neuro and last time gave me gear that goes up to 20l/min. Getting the mask tomorrow - yay!

She also upped my verap to 240mg - I told her about the larger doses in the research but "We dont do that here!"
She's also reluctant to definitively say that I have ch because I'm female and because the hits dont come at exactly the same time each day. I'd appreciate hearing from anyone who has 'unpredictable hits', although I'm thinking I may just look for another neuro or headache specialist - anyone in Melbourne able to recommend someone?

She did also say, and I quote "But between the headaches you feel 100% well and fabulous?" - Umm, no - but the O2 is my friend and lets me get on with life!

Having just read Mike's post about the difficulty of getting O2 in NZ, I'm feeling lucky that it wasn't quite so hard here - only a week of phone calls and doctor's visits - although the neuro did complain about how long it took her, and how many phone calls, to find out where she could get O2 for me, as she's never to to do that for anyone living in the city.

Looking forward to using the new mask (well, not looking forward to a hit but you know what I  mean)Thanks again to you all for being here.

WEll of course it's not CH you're a woman after all! ;D And the exact time each day? Absolutley not a requirement for a CH diagnosis. Great to hear you got the 02, my very bestest friend still!

Joe

Hey Barbara,

Well at least you are slowly getting there  :-/

I wouldn't recommend my neuro to you because he was a bit of a prat, and had a hard time diagnosing CH too due to the fact that I'm female.   When I told him the only year I didn't get a cycle was when I was pregnant he recommended I get pregnant again aghhh.  How hard is it for these people to look up recent studies and keep informed??

Good luck with the 02!!

[smiley=hug.gif]

P.S.  I hope your regulator goes beyond 10lpm!!

Hi Barbara,

I mostly get these headaches at night (and also into the AM up to about noontime at times) but they are not timelocked.  I get multiple hits at night, and although sometimes some do occur at the same time some nights, this is by no means a rule (even though I make a big effort to go to bed the same time each night).  Also the number of headaches per night changes throughout cycle.  I think your doctor is absolutely wrong that they need to occur at the same time each day or night for them to be CH.  I would say when I was younger (earlier in my cluster career they tended more towards occurring at the same time).  For her to question whether you have clusters because you are a woman shows she is NOT informed about cluster headaches.  I went from age 14 to age 23 without a diagnosis for that very reason, was told I was crazy and also told that only middle aged men get clusters headaches (was finally diagnosed by a headache specialist).

The IHS (International Headache Society) defintion for cluster headaches can be found at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It doesn't mention there anything about them having to be at the same time otherwise they are not CHs.

For a while I used to get mine at exatly 9.17pm each night. I used to hate watching the clock knowing what was going to happen next (this was before I found this forum and oxygen, so I had 45-75 minute CHs). It was a bit like waiting for my execution or a torture session.

Now there is a degree of randomness around when they arrive, although there are times when I'm more likely to get them, especially between 8pm and 10pm, but unlike most others, not overnight.

The random time seemed to coincide with when I started using verapamil, but that could be just coincidence.

And 240mg of verapamil is low, but some people may get relief at that level. But many need 360-480mg (480 for me).

Cluster headache, nicknamed "suicide headache", is a neurological disease that involves, as its most prominent feature, an immense degree of pain. "Cluster" refers to the tendency of these headaches to occur periodically, with active periods interrupted by spontaneous remissions.

A cluster headache is one of the most painful types of headache. A striking feature of cluster headache is that the attacks occur in cyclical patterns, or groups/clusters — which gives the condition its name.

They do not have to occur at the same time every day, however for some sufferers they do occur in the same General time frame such as 10a-2p and/or 10p - 2am for example.  You can get one at 11:30pm one night and the next night get one at 1am.

The pattern varies from one person to another, but most people have one or two cluster periods a year. During remission, no headaches occur for months, and sometimes even years.

I do not get mine at exactly the same time all the time either.  One day I can have a hit while at work at 1:30pm and that night have one at 11pm, the next day at 10:30am and may skip a night hit.  The CH beast does not like you to get used to it...the minute you do it will/can/does change on you.

JustNotRight wrote on Dec 2^nd, 2010 at 8:32pm:

The CH beast does not like you to get used to it...the minute you do it will/can/does change on you.

Aint that the truth!!

I get 99% of mine at the same time in the evening BUT im  :D

Great to see your on the right track.

Hi Barbara,

I was first diagnosed 8 years ago at the age of 45. I went to the Jefferson Headache center in Philadelphia PA. The docs said it was unusual for an older woman to get them but they DID immediately diagnose me with CH, all the classic symptoms. I just got them back after 8 years and they are acting very strange. I get shadows (small headaches) all day long and have been for almost 3 months with major head bangers, as I call them, about 8 times in the last 3 months. Last week I landed in the hospital, the pain was unbearable. Good luck to you and I suggest you keep searching for the right doc. I think Prednisone has helped me. Just finished my third round of the med. Hand in there....

Your neuro hesitates with a CH diagnosis because you're female and the attacks don't occur at exactly the same time every day.

Well that sounds like the usual load of baloney from a rank and file neuro. They are some of the most ignorant idiots in the world when it comes to CH.

Glad you're considering replacing that neuro with a headache specialist.

And glad you're getting 20 LPM O2!  :)

Dittos everything above, and...I would encourage you to not only read this site, but print out any research or posts which will help you when you find a neuro you can rely upon. Should they do their own research? I think so, since they're gonna charge you a bunch for their currently outdated since med school knowledge. Will they? Probably not. Having said that, they very well may (if you are full of the right humility and winsomeness) take from you and glance at the kind of helpful info you'll find here. Best of luck and God bless! lance

1st order of business:  Fire your Neuro and find another.

2nd order of business:  Repeat #1 until you find someone knowledgeable. 

In the mean time, read, read, read, ask questions about what you are reading, Rinse, Repeat.

Jerry

Thanks to all for your comments. I forgot to mention two things the neuro said. I commented that I would rather use Oxygen than use the injections and she said, "Oh, those only work for migraines - they don't work for clusters." Her parting shot was to say that it didn't really matter what course of action I decided to take re medications etc as "the cycle will just stop by itself anyway."
to add insult to injury, had to pay $200 for the appointment!

So... have got a letter for a non re breather mask and will be picking it up this afternoon along with a smaller cylinder for use outside the house(have a D size for at home)... think I'll take your advice and check out headache specialists in Melbourne instead of seeing this neuro again.

Barbara wrote on Dec 3^rd, 2010 at 7:02pm:

Her parting shot was to say that it didn't really matter what course of action I decided to take re medications etc as "the cycle will just stop by itself anyway."

Hmm, what kind of a doctor thinks like that?

Surely using the same logic it's pointless treating anything as the patient will eventually die at some point anyway (none of us will live forever)?

And are they not a fraud to say that and then charge for the privilege of providing medication that they believe to be ineffective?

Barbara wrote on Dec 3^rd, 2010 at 7:02pm:

..."the cycle will stop by itself anyway"...had to pay $200 for the appointment!

doctor  n. one who takes money whilst nature takes its course.