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Casandra

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Questions, could someone help?
Sep 23^rd, 2010 at 11:17pm

I have only had CH for 3 montha and was only diagnost 3 weeks ago I am curious about a few things:

Ive been diagnost and have been doing oxygen treatment but I still havent had a CT Scan, it is sceduled for next week. What is the reason for one if they have already determind whats wrong?

Also my CH started out happening only a few times a week but have drasticly increased to roughly 7-10 times in a 24 hour period. they last anywhere from 20 minutes to 90 min. I havent had a day without them for the last24 days. Does that make them chronic or will time tell?

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Kate

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Re: Questions, could someone help?
Reply #1 - Sep 23^rd, 2010 at 11:21pm

CH is kind of a diagnosis of exclusion. Neuros do a CT or MRI to rule out anything more sinister like a tumor that is causing your headaches. If nothing is found, which is most oft the case, they can safely assume it is cluster headaches.

You need to have a period of a year without more than a 2 week remission from the headaches to be classified as chronic. Anything shorter, regardless of whether you get 1 headache a day or 6 is episodic.

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bejeeber

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Re: Questions, could someone help?
Reply #2 - Sep 24^th, 2010 at 2:10am

Hi Casandra,

Neuros these days routinely order a CT or MRI when they encounter a CH patient. The likelihood of anything showing up is small so don't waste any time being concerned about it.

Episodics very often find that the frequency of hits will increase as an episode wears on. I know I do. Hopefully you're just coming thru the peak of an episode and will be done with this one soon.

We've been seeing some chronics and those with long/frequent episodes find some serious relief with the preventative approach focused on over at clusterbusters.com and it's forum. Here's a video talk on that subject: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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« Last Edit: Sep 24^th, 2010 at 2:10am by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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black CH.com Old Timer Offline I Love CH.com! Posts: 347 Greece,Athens Gender:	Re: Questions, could someone help? Reply #3 - Sep 24^th, 2010 at 8:39am hang in there!
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Questions, could someone help? Reply #4 - Sep 24^th, 2010 at 9:24am Does your neuro have you on any kind of a prevent med? Verapamil, Lithium, Topomax etc? All are used to reduce the number and itensity of your hits. Hang in there, sounds like you're in the middle of a tough stretch. Joe
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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: Questions, could someone help? Reply #5 - Sep 24^th, 2010 at 9:59am And don't forget the energy drinks like RedBull or Venom or Monster (or whatever you like) that contains caffeine AND Taurine. Pounding an energy drink at the first sign of a visit by the beast (along with O2) may decrease the frequency of the hits.
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DennisM1045

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Re: Questions, could someone help?
Reply #6 - Sep 24^th, 2010 at 12:52pm

Hi Casandra and welcome home

Are you still having long attacks even with Oxygen? If so maybe we can help straighten that out. You should see abort times in 10-15 minutes max.

Are you using a non-rebreather mask (kind with a bag)?
What flow rate are you using?
Are you able to hiperventilate at that flow rate?

Hope you get some relief soon.

Oh, and unless you've had a full year of attacks without more than a month off then you are not, by the current definition, chronic.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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wimsey1

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Re: Questions, could someone help?
Reply #7 - Sep 27^th, 2010 at 8:03am

Diagnostically, chronic requires the kind of stat you've been told about already, but personally, any long bout of unrelieved pain feels neverending. Episodics can experience such long periods of cycle you begin to wonder if they'll ever quit. The problem is...the cycle ends...and we lose touch with our aborts or wait too long to go back on preventatives. My advice is to deal with the pain that you have...and not worry at this point if you are chronic or episodic. Blessings. lance

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Casandra

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Re: Questions, could someone help?
Reply #8 - Sep 29^th, 2010 at 9:31pm

I am still having long attacks, yes, very long. Sometimes they last for hours with only about15 minutes of relief in between. When they are bad like that the oxygen don't even touch the pain. I would like to use a mask but they gave me the one u breath through your nose ( I don't know the correct term for it) The flow rate is set at 6 the doctor said to set it at 7 but the rates are all even numbers. So I just picked 6. Am I suppose to hyperventilate? Huh, i try to breath real deep and calm, am I doing it wrong? I also take verapamil once a day ( 2 80mg tablets once a day) I find this kind of odd so I took it upon myself to change it, I know I shouldn't without talking to my doctor but it seems more logical to me. I take 1 tablet in the morning @ breakfast, one @ lunch then 1 before bed. It makes more sense to spread it out, is that wrong? And I LOVE red bull but that's the last thing on my mind when that feeling comes about, all I can think is omg how long is this one gonna last and am I going to be able to handle it. Some days are really really good with only a couple of attacks but I seem to pay the price for those days. Idk, all I can say is i thank all of you for your support and help I know I can learn a lot about this just from coming to this site

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Casandra

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Portage, Ohio
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Re: Questions, could someone help?
Reply #9 - Sep 29^th, 2010 at 9:42pm

I have not been able to stay on this site for more than about 10 minutes at a time ( the computer light starts to trigger an attack) but tonight I have been able to read a little more. I read the oxygen info and seen that the way I have been taking it through my nose is not suggested but to use it through my mouth. Knowing that now I wonder if it will help more?

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Skyhawk5

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Re: Questions, could someone help?
Reply #10 - Sep 29^th, 2010 at 9:49pm

The nose tubes (nasal canula) are almost useless for CH you must have a NON-rebreather mask. The best mask around is available on this site at the CH.com store. Hyperventilating is important as is flow rate with a proper mask with a bag on it.

Please read thru the following link about O2 use for CH.
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Learning as much as you can about CH and it's treatments is in your best interest, it's very common that Dr's, even Neurologists know very little about CH.

Good luck, Don

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Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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wimsey1

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Re: Questions, could someone help?
Reply #11 - Sep 30^th, 2010 at 8:27am

Don, Skyhawk's right. Many tell us O2 didn't work only to find out it wasn't used effectively: high flow rate up to and including 25-60lpm. And many can't wear a mask during a hit so they use the t-tube (mouth tube and breathe in only through their mouth). Crank up the volume as high as it will go and if it won't go high enough, get a different regulator. I'm certain you'll see a huge difference. Blessings! lance

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Questions, could someone help? Reply #12 - Sep 30^th, 2010 at 9:53am The nasal canulas are worthless for most. I think you'll be amazed at the difference in abort times with the correct set up. The basics: A Non Re Breather Mask. Regulator flow of at LEAST 15 LPM, preferably up to 25. Get on it at the first sign of an attack. My abort times run 6-8 minutes. Good luck. Joe
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Poli CH.com Junior Offline Posts: 37 Alicante\|Spain\|Europe Gender:	Re: Questions, could someone help? Reply #13 - Sep 30^th, 2010 at 4:55pm Yep, me too. I think you're just doing it wrong, Learn on this site, you can save all the pain, it'll be just a bother. Saludos Poli
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