Just got home after a screaming match with my neuro - but at least I got SOMEWHERE

I have had a HORRID couple of days, with 3 x 3 hour, BAD headaches. I have started napping during the day so I'm prepared for what the evening brings. So far, my headaches haven't been waking me up - they just start later in the evening/night and make me get to bed really late.

So - the neuro. He still wants to go down the migraine path. He wants to do a spinal tap to rule out vasculitis, and given I need to have one for the Maybe-MS thing, that's fine with me. But I don't fit the "pattern" for vasculitis. So, I brought up CH.

He tells me - they are 90% in men. SO??? I scream - THAT MEANS THEY OCCUR 10% IN WOMEN! They are mostly in older people - SO I scream, THAT MEANS THEY SOMETIMES OCCUR IN YOUNGER PEOPLE! They are always unilateral SO I scream THAT'S THE SAME IN MIGRAINES!!!! HAVE YOU EVER COME ACROSS A MIGRAINE SUFFERER WHO GETS 3 HOUR HEADACHES EVERY DAY? WHO GETS MIGRAINES THAT DON'T RESPOND TO ANYTHING? WHO GETS MIGRAINES THAT ARE WORSE IF THEY LIE DOWN? WHY DO YOU WANT TO PUMP ME FULL OF DRUGS THAT WILL TAKE MONTHS TO GET A RESULT FROM, WHEN YOU COULD LET ME TRY OXYGEN AND IT WILL EITHER WORK, OR NOT WORK, IN 15 MINUTES?

He said that yes, I could go to the hospital during an attack, and they may let me try. I asked him if he could write me something to give them so they WILL try. He says he won't because he doesn't think that is what they are. So I ask him if he would do it for someone he suspected of having CH. He says he DOESN'T suspect I have CH. SO I scream WHAT WOULD YOU DO IF YOU TALKING TO AN OLD MALE? WOULD YOU WRITE HIM SOMETHING??? He said if I want, I can go to the hospital and get them to call him if he is working/on call.

And I am more than welcome to get a second opinion.

SO - this is what I came out with:

Topamax - work up to 100mg 2xday
Imigran - 50mg at first sign of attack, may take a second after a couple of hours. My GP can work me up to 300mg if he wants to.
The name of a couple of neuros at a neurology/headache clinic in town. YAY!!! Need to get the GP to write a referral - no problem there.
He'll arrange the spinal tap - probably in a few weeks time.
A follow-up appointment with him in 4 weeks - I'm surprised he's that brave.

So I'm going to have a look around on here to find out what the thoughts are on Topomax and Imigran. When it strikes again, I'll try the Imigran - but I'll go straight for 2 - then next time, I'm going to the hospital for O2 if the imigran does nothing, and I'll tear the place apart if they won't give it to me!!!

(can you tell I'm really, really peeved???)

Thanks for hearing me out!

Mel

Go to a welding supply shop. Tell them you need it to keep live bait alive longer - you're going after that big, elusive fish.

If it doesn't respond to O2, maybe you don't have CH.

I'm more than happy to entertain the idea that it's NOT CH!!

I'm putting the imigran to the test already.... grrrrrr.... i took 100mg. So much for sleeping all day.

Thing is, many different headache types will respond to Imigran. But from what I understand, migraine doesn't generally respond to O2 where CH will.

Well thank gosh you got the number for the headache clinic because that pill form of imigran that your doc prescribed is notoriously too slow for most CH attacks. If only he would've prescribed inhaler or the most effective form - injectible. Plus a headache specialist should be able to give you a reliable diagnosis.

Some who've been prescribed pill form imigran have used it effectively as a preventative - if they know an attack will happen say an hour after going to sleep they'll take it right before bed.

Many CH'ers frustrated with their doctors do go to the welding supply place for their O2 as Brew mentioned above.

Hopefully i can keep it at bay with the imigran then til I get to see the headache neuro. I just want the pain to stop. My girls are coming back this afternoon after 3 weeks with their dad, and I have to function. I can tell my boss is already getting the willies with me - he might as well be holding up a sign that says "It's just a headache - suck it up!"

Too bad you're not in a position to hold up a sign that says "take this job and shove it!!"  :P :D

yeah i wish! I've been there 18 years, and at least I've got plenty of sick leave. The neuro did mention injectible and I should have begged him for that. 30 min after the pills, and nothing has changed. Our welding supply people here have a medical section, I think I'll call them today. And someone suggested the fire brigade, but I doubt they will do anything without something from the doc.

Quote:

The neuro did mention injectible and I should have begged him for that.

Yep you should also stick to your guns,stay in their face until you get the treatment you deserve.
I hate your neuro too!!! ;D
the bb

My GP is more inclined to humour me and he did admit he is stumped, so I'm sure he's happy to try anything too.

I will see him on Monday so if I'm still suffering badly I'll ask then - i assume it's self-administered??

Quote:

i assume it's self-administered??

Both oxygen and injectable Imigran are self-administered.

Have you thought about this method?

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Damn straight - it works for me like a charm.

Do look into the clusterbusters.com site.
and yes the imitrex is self injectable. Easy really.
the bb

"Imigran": where do you live?

I take it you are not U.S.--meaning it's hard to give useful suggestions when we don't know the system with which you are working.

Please see the message in the first section, "help us to help you".

Oh sorry.... I'm in Australia

O.K.; if you have access to a headache specialist, use him. Don't fall into the trap is trying to treat yourself. Dumping a doc who doesn't know CH is a major first step; next is a good doc who can diagnose properly.

Shoulda known that you're 29 year old Melby from Melbourne!  :)

If you get the injectible imigran - here's the link to the critical imitrex (imigran) tip:
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Quote:

Don't fall into the trap is trying to treat yourself. Dumping a doc who doesn't know CH is a major first step; next is a good doc who can diagnose properly.

I agree with 90% of that. If I wouldn't have taken the bull by the horns and treated myself I would still be in the fetal postition,slingin snot and banging my head on the floor. I am currently PAIN FREE because I treated myself. I give no doctor any kudo's at all for my pain free status.
all the best, to all the best
the bb

wrote on Jan 31^st, 2011 at 10:09pm:

I give no doctor any kudo's at all for my pain free status.

I, on the other hand, give some of the credit for my pain-free status to Dr. John Halpern.

But not because of any prescription he wrote.

I give credit to this site, to any neuro who is willing to take the time to give to an orphan disease, and to the brave men and women who suffer every day with this horrible affliction. I say we are brave because we could have chosen to crawl under the blankets and curl up and whimper and give up...not that I haven't done that a few times. Also, I give credit to our supporters who try and work with what works, to keep us from crawling into a hole and pulling it over ourselves. CHs are not for wimps, friends! Although, being a wimp, I'm not sure then why I get them. >:(  Blessings. lance

"Some who've been prescribed pill form imigran have used it effectively as a preventative - if they know an attack will happen say an hour after going to sleep they'll take it right before bed."

I did this and got a bit of comfort from it, two problems I had with it thou, 1) I got hooked on it, got to the point when I couldnt tell the differance between a ch attack starting and the imitrex sending out the "i want more" signals, the signals being the start of another headache. When I came of them it took two days to get rid of the imitrex headache.
The second issue was that I kept missing the early signals so was always too late getting on the Oxygen.

Hi Mel
I got this from the list of MD/Nuro's on the OUCH US site, maybe this guy can help.
There are a couple recommended in Vic but probably to far away to help you.
Cheers
Barry

Prof. James Colebatch, PhD, FRACP

University of New South Wales

Randwick, NSW

You da man Barry.  8-)Hope your all dry down there.
the bb
Warm and fuzzy!!! ;D

Since I live in America health care is not available so I treat myself. I bought an O2 tank and first stage reg from a catalog and get non rebreathers from a pharmacy. I can get O2 fills through my job. I have used Imitrex nasal sprays in the past but they are 30 dollars a headache at three a day for fourteen days. Plus they lose effectiveness after four or five uses. When I did go to  doctors  for Clusters  I did not tell them "I have clusters" I stated my signs and symptoms very plainly. If they made a diagnosis other than cluster headaches I got up and walked out. Because they are stupid and do not belong practicing medicine. I actually had one that pegged it but he would not give me an O2 scrip. He said if something happened to me he would get in trouble. But it is not like I was asking for an  at home appendix removal kit. I swear I think the reluctance for prescribing O2 is based on pharmaceutical influence. 

Good on you for getting the 02 yourself, can sure change your outlook on the beast when you know you're on a level playing field now. Don't know if you've heard of the "alternative" therapies yet, non mainstream treatments that are cranking out some pretty impressive results. Worth a visit and a read.

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Joe