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erk

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my 2 cents
Jan 20^th, 2011 at 7:20pm

hi. I was diagnosed by a Neuro with clusters 10 yr. ago. Have permant eye droop, smaller pupil on side of attacks. I get usually only 1 attack a day which wakes me shortly after falling asleep,pain is worse than any I've felt. 3 yrs ago new Neuro prescibed Imitrex injectables, they usually work pretty fast. I get month or so long episodes where i get them nightly followed many months with only ocassional attacks. this somewhat differs from what I've read of other episodal suffers accounts, in that they get more attacks during episodes and they have pain free periods. I dont trust Neuro's because of there lack of headache training. Any thoughts?

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Guiseppi

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Re: my 2 cents
Reply #1 - Jan 20^th, 2011 at 7:34pm

Welcome to the board! While you're not necessarily a "typical" episodic, the nature of the beast is to constantly change and defy any attempt at classification! Wink

That being said, read this link.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

You may find, as I did, the 02 works as fast as the trex did, with none of the side effects.

Then look into melatonin, an OTC sleep aid. Start with 9 mg, about 30 minutes before bed time. Many can avoid the night time terrors this way. Some mix the standard release with the extended release for a 1/2 punch to get them thru the night.

Glad you found us, hope he leaves you soon.

Joe

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DennisM1045

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Re: my 2 cents
Reply #2 - Jan 20^th, 2011 at 7:55pm

Welcome aboard!!!

Like Joe said, we are all different. No two seem to suffer exactly the same way.

I too find O2 a better alternative to Imitrex injections. It seldom fails me and works just as fast. Of course you have to use it at a high enough flow rate.

Anyway, stick around and share what you've learned in the last 10 years. We promis to do the same.

That's how this place works Wink

-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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erk

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Re: my 2 cents
Reply #3 - Jan 20^th, 2011 at 8:45pm

Thanks for the support guys. Going to keep reading info on site. Hoping Imtrex prescription is ready soon, also have 240mg verapamil coming (never tried that, a little unsure on it), battling the beast with no weapon for a week ( 9mg melatonine each nite for a week hasn't helped me yet). Going to try red bull's and skip the OTC's which I've known are a waste. Also Im going to ask Neuro for o2 like suggested. Thanks again.

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« Last Edit: Jan 20^th, 2011 at 8:46pm by erk »

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bejeeber

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Re: my 2 cents
Reply #4 - Jan 20^th, 2011 at 10:35pm

As anyone who has seen my rants here knows, I sure don't trust neuros either due to their lack of training, but if you could find an actual headache specialist, at least that would be someone with genuine headache training.

Some CH'ers go as high as 18 or even 21 mg of melatonin before getting night trelief. I'm not informed enough to actually suggest doing that, although if I would've known about these higher doses working for some, I would've tried it myself during my last episode (9 mg didn't work for me either).

FWIW, I don't know if I'd go on the verap for only one attack a day (as long as you're to confidently, consistently able to abort that attack).

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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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BigCoffinHunter

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Re: my 2 cents
Reply #5 - Jan 21^st, 2011 at 11:30pm

Try boosting the Melatonin to 12 or 15, maybe add some Magnesium too. 240 is a pretty low dose of Verapamil for clusters, 480 or higher is what works for a lot of us. It's like magic for me.

erk wrote on Jan 20^th, 2011 at 8:45pm:

Thanks for the support guys. Going to keep reading info on site. Hoping Imtrex prescription is ready soon, also have 240mg verapamil coming (never tried that, a little unsure on it), battling the beast with no weapon for a week ( 9mg melatonine each nite for a week hasn't helped me yet). Going to try red bull's and skip the OTC's which I've known are a waste. Also Im going to ask Neuro for o2 like suggested. Thanks again.

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erk

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Re: my 2 cents
Reply #6 - Jan 30^th, 2011 at 8:35am

First to update. I'm still getting hit hard every stinking night. Also had several daytime hits, redbull has aborted most. I haven't tried them for night time hits, trying desperately to sleep, I'm exhausted. I have been taking melatonin nightly for 2 weeks (6mg first week uped to 9mg for second)and added an an otc sleep aid for the last week. But no PF nights.
When do I give up with this and try something else?

I having been using only 2mg imitrex to abort, which works, but I get a hit again about 5hrs. later, unless I get up sooner for work. Should I go back to the 4mg dose?

During my last Neuro visit they scheduled me for another MRI. Had one plus a ct 10 yrs ago, docs thought tumor was causing Horner's. They said the tests showed nothing, except for sinual cavity cyst, which they said wouldn't be the cause(???) Is another MRI a waste?

I just started a HA journal, wish I had from the onset so I could see exactly how many episodes i've had and their duration. This seems to be the worst and longest but cant say for sure.

Thanks for any feedback.

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Guiseppi

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Re: my 2 cents
Reply #7 - Jan 30^th, 2011 at 9:05am

I did an informal survey a while back to get some starting numbers for dosing on melatonin. The mid range seemd to be about 9mg with some going as high as 15 mg a night. Several have found positive results combing equal amounts of extended release melatonin, with standard release, say 6 mg standard and 9 mg extended. The combo would get them through the whole night. Might be worth a shot. There are some for whom melatonin just doesn't work....typical of the beasts quirky nature.

I haven't seen anyone post that reducing the amount of imitrex used to abort an attack, has also lessened the time between hits. I don't use the imitrex tip as I have oxygen and almost never use trex anymore.

Have you started the verapamil yet? It'll take a week or two to start seeing results but that should ratchet the beast down. If you have not, get an urgent call into your neuro to get on a 2 week prednisone taper now, to give you a short break while you wait for the verapamil to kick in. And REALLY push for the oxygen, it's great for the night hits because you can get back to sleep a lot quicker.

Hang in there, high cycles suck.

Joe

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: my 2 cents Reply #8 - Jan 30^th, 2011 at 9:35am And once you start taking verapamil, you will need to limit your intake of the taurine in energy drinks. Too much of both can play havoc with your heart rhythms.
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Brian L CH.com Newbie Offline I Love CH.com! Posts: 1	Re: my 2 cents Reply #9 - Jan 30^th, 2011 at 10:02am Hello - My name is Brian - I am a newbie....going on 3 weeks....just a quick comment - you guys sure know what you are talking about - I have my nuero appt on tues.....went to ER already. I tried a heating pad last night - on my neck and head - it seemed to help - what do you think....?
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: my 2 cents Reply #10 - Jan 30^th, 2011 at 10:07am I've heard that heat helps some people. Personally I couldn't bear the thought of it. It's frozen gel ice packs for me.
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Guiseppi

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Re: my 2 cents
Reply #11 - Jan 30^th, 2011 at 10:13am

Heat and cold, for most it's one or the other! Some swear by the ice packs on the side of the head, others like you, go for hot showers or heating pads. All pale in comparison to the more effective treatments!

Oxygen Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

The keys to oxygen, high flow, at least 15 LPM, a Non Re Breather mask, get on it at the first hint of an attack. My aborts run about 6-8 minutes.

Imitrex injectable or nasal spray. Both will work quickly to abort an attack. the pills generally do not work for CH as they take too long to get into your system.

Energy drinks like red Bull, Monster, any containing the combo of caffiene and taurine, chugged at the first sign of an attack can abort or reduce attacks for many.

Preventative meds, amed you take daily while on cycle to reduce the number and intensity of your hits. verapamil, Lithium and Tiopomax are all used by members of this board as prevent meds.

Keep reading on this board! An educated CH'er hurts a lot less. Welcome to the board.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: my 2 cents Reply #12 - Jan 30^th, 2011 at 10:17am And don't forget to check out Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Linda_Howell

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Re: my 2 cents
Reply #13 - Jan 30^th, 2011 at 12:50pm

You said you don't trust Neuros and believe me, we all understand BUT...you also said,

Quote:

was diagnosed by a Neuro with clusters 10 yr. ago.

At least this one got you a diganosis. Many here go from one Dr. to another for years and years before they finally get a correct diagnosis.

Because yoyu seem not to get hit very often I would think the oxygen route would be the best for you. The majority here swear by it.

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Hurt people.....hurt people. Think about it.

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erk CH.com Junior Offline Posts: 37 bunker hill , west virginia Gender:	Re: my 2 cents Reply #14 - Feb 11^th, 2011 at 10:15pm Well it seems as though this one has turned the corner. 7 out of 10 PF nights /days and 5 in row (it's miller time!!!). I will be more prepared next time, thanks mostly to this site. Thanks to all, eric
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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: my 2 cents Reply #15 - Feb 11^th, 2011 at 10:25pm Well that's great news. Do stick around, continue to educate yourself, enjoy your pain free time and ALWAYS be ready to kick the beasts arse! Joe
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