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Gemma

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How soon is now?
Sep 23^rd, 2008 at 3:16pm

Hi

I feel a bit silly, but I have a question/dilemma that is really starting to get to me.

When I was diagnosed with CH, I was prescribed a nasal spray (sumatriptan), and both my GP and the info leaflet for the spray say that I should take a puff of the spray when I feel the first signs of an attack coming on.

But the thing that is confusing me at the moment is, I keep getting shadowy pain, and I cannot be sure each time whether its going to be "just" a shadow, or if its going to turn into the Big Bang. So I end up having a dilemma with myself over whether I should/shouldn't use the spray, or should I take it, but when etc. Undecided

Sometimes though, a big CH attack will come on at night and wake me up, so by the time I'm woken, its already right there, full on. Is a nasal spray effective when a CH episode is in full swing?

Thanks

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Ernie Moss aka Wishbone

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Re: How soon is now?
Reply #1 - Sep 23^rd, 2008 at 3:42pm

I use when necessary imitrix nasal spray and it is effective as an abortive for a full blown hit, much faster of course than tablets, however it will take a while. I have found and I am sure you have also that usually if awakened with a hit it is usually more than a 4-5 (unless you are getting hit every hour or so) so the spray normally takes at least (in my case) 15-20 minutes to begin working lower the kip. If you don't have O2 I strongly recommend that you get your MD to prescribe the same and use that, when possible as your first line of defense. Make sure he/she presribes a regulator of at least 15lpm (I prefer 25lpm) and a non-rebreather mask. At first for security reasons if you are hit with an 8^ or higher you may want to use the imitrix spray and then use the O2 until you feel secure with the O2. Some people say not do that, but I have done that a lot with high kip with no problems. Good luck and hope you are PF soon. Wishbone.

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CH-HELL

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Re: How soon is now?
Reply #2 - Sep 23^rd, 2008 at 4:52pm

Hi that is hard question I am a chronic ch sufferer with constant never ending shadows and phantom ha's if I get hit it is very hard to catch it at the onset because some of my phantom ha's will spike up to a 7 kip but only last for a minute or two, so what I have to do is wait until it hits a 6-7 kip before I take my imi, also I have tried the nasal spray and it didn't help as much as the injections and it made me nauseated. Many people here clam o2 helps and that would be my first choice when the beast spikes up, Im getting a new regulator soon and I'll let you know if it works. Phil

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Cathi_Pierce CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1191 x0\|Oregon City\|USA\|\|0\|0\|OR,Oregon Gender:	Re: How soon is now? Reply #3 - Sep 23^rd, 2008 at 5:22pm Phil, just a thought, since you mentioned shadows.......what meds are you on now? Is it possible the shadows could be rebounds? I am soo looking forward to you getting your 02 onboard...............wishing you PF days!! Cathi
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Tobias

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Re: How soon is now?
Reply #4 - Sep 23^rd, 2008 at 6:26pm

Hi Gemma,

Quote:

So I end up having a dilemma with myself over whether I should/shouldn't use the spray, or should I take it, but when etc. Undecided

I always wait until I am sure that it is not just a shadow. However I take Imitrex (Sumatriptan) injections. So my case is a bit different because injections work for me within few minutes.

Quote:

Is a nasal spray effective when a CH episode is in full swing?

I did try the nasal spray before but I never had permanent luck with it! Maybe it's because of the nasal congestion. However injections never failed for me even at the crest of my cluster periods.

Quote:

I feel a bit silly, but I have a question/dilemma that is really starting to get to me.

Don't feel silly - it is a problem. In my opinion you should wait if you can take the pain until you find relief after the application. Otherwise I wouldn't hesitate to apply it right away.

good luck,
Tobias

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jon019

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Re: How soon is now?
Reply #5 - Sep 23^rd, 2008 at 7:46pm

Hi Gemma,

Not a silly question at all...

One of my favorite sayings is by AussieBrian, "26 years of CH and still no bloody good at it" (or something like that). Just when I think I know what's going on, the beast morphs and laughs in my face. However, I have developed a sense for when a shadow is just a shadow or will turn into a hit, it's way far from being totally accurate
but it's better than guessing. My advice is to log EVERYTHING (at least for now, until you can detect a pattern, while being aware of "changes".) It MIGHT give you a sense of shadow vs hit.

My rescue med is Zomig Nasal Spray. To date, after several years of use, it has only failed twice. Even works after a hit ramps up.With any triptan, it is wise to limit use. SO, I always hit the O2 first plus an energy drink. If it's gonna work (for me) it will be within 10 min. If it doesn't, then I use the Zomig. Verapamil is my prevent (480 mg/dy in normal cycle, 720/dy in high cycle).

Best,

Jon

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Re: How soon is now?
Reply #6 - Sep 24^th, 2008 at 4:09pm

Gemma wrote on Sep 23^rd, 2008 at 3:16pm:

Hi

I feel a bit silly, but I have a question/dilemma that is really starting to get to me.

When I was diagnosed with CH, I was prescribed a nasal spray (sumatriptan), and both my GP and the info leaflet for the spray say that I should take a puff of the spray when I feel the first signs of an attack coming on.

But the thing that is confusing me at the moment is, I keep getting shadowy pain, and I cannot be sure each time whether its going to be "just" a shadow, or if its going to turn into the Big Bang. So I end up having a dilemma with myself over whether I should/shouldn't use the spray, or should I take it, but when etc. Undecided

Sometimes though, a big CH attack will come on at night and wake me up, so by the time I'm woken, its already right there, full on. Is a nasal spray effective when a CH episode is in full swing?

Thanks

i've never had instant success with abortives when they wake me up. at that point i pretty much have to take the ride. i've heard of using 4way nasal spray (non generic) before you go to sleep. the breath rite strips that go over your nose help a little bit too. i've used the cannula nose piece in my mouth at 1 or 2 lpm and got a few hours of sleep rather than 30 or 40 minutes. make to use an inline dehydrator or it will dry you out. i wish we had a fixed thread just for sleeping with ch.

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ClusterChuck

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Re: How soon is now?
Reply #7 - Sep 24^th, 2008 at 10:53pm

It is not a silly question at all. It is a very valid question.

I am chronic, that should not be taking imitrex, due to all the heart attacks that I have had, but I still take it, when I am at hell's door with a hit that won't respond to oxygen.

I have been yelled at, many times, by my wife, and fellow clusterheads, because I wait before I get on oxygen, as I wait to see if it is just a shaddow, or a real hit.

Due to the limit in the number of doses of imitrex or zomig that you can take, during a 24 hour period, I think it is the right move to wait to see if it is a real hit or not. You may have to suffer a few more minutes, for the drug to take effect, but I think it is the right track to take.

BUT, as has been mentioned, the even SMARTER move, is to get oxygen, and use THAT as your first line of defense! There are not the side effects, nor the cost, nor limits to how much you can take. There are vertually no side effects to taking oxygen. Give it a shot!

Good luck!

Chuck

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DeStijl

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Re: How soon is now?
Reply #8 - Sep 24^th, 2008 at 11:15pm

Excellent question. I too am perplexed by the paralyzing predicament posed by the precise pace to prick myself with pointies. I tend to just slam an energy drink and wait. Those shots are all too heavy on the wallet to just drop. Hell, it might as well be William Burroughs signature model heroin for what we pay for the crap.

O2 is the first line of defense. <----period

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« Last Edit: Sep 24^th, 2008 at 11:16pm by DeStijl »

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jay

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Re: How soon is now?
Reply #9 - Sep 25^th, 2008 at 8:50am

Like the others not a stupid question at all I am chronic with shaddows for over a year now and I use the 02 with the high flow regulator I havent been able to use the nasel spray due to my nasel passages being blocked most of the time and have to use sumatriptian injections which I hate as injecting myself just isnt my style!

However I find the injections with the 02 does give the best results and hope you do not suffer with the shaddows for too long I have just got used to knowing when its a real attack or not.

Good luck and hope you dont suffer for too long

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