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Wendy1

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THEY'RE BACK.... UGH, help please : (
Jul 17^th, 2011 at 7:38pm

After 4 WONDERFUL yrs... they are back... longest stretch ever. I cried as much for the pain as the fact that I have started a cycle... I just don't know if I have it in me anymore : (

Anything new out there... My therapy of choice (if I can remember right) has been Verapamil 360m twice daily (not the extended release)... but of course it doesn't start to kick in till the end of the cycle.. and of course oxygen. God Bless all my Cluster buddies

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« Last Edit: Jul 18^th, 2011 at 9:33am by Wendy1 »

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Guiseppi

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Re: THEY'RE BACK.... UGH, help please : (
Reply #1 - Jul 17^th, 2011 at 11:27pm

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Go thru the 02 link again, some changes in how it's used has increased the abort speeds and overall effectiveness.

Go to the meds section, look for the topic, "123 P F days and I think I know why" A daily vitamin/mineral/fish oil supplement regimen, all over the counter stuff, that's providing a great deal of relief for many who try it. Do give it a shot.

Might want to ask the doc for a 2 week prednisone taper, start at 60 mg or so, wean down to zero. It provides up to 100% block from attacks for me, similar results for others, gives your prevent a chance to kick in.

Welcome back, last year I went back on after an almost 2 year break.....it sucks. But you're wrong, you CAN handle it, we'll help any way we can.

Joe

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Wendy1

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Re: THEY'RE BACK.... UGH, help please : (
Reply #2 - Jul 18^th, 2011 at 9:37am

Thank you, thank you Joe... I will look up the otc regimen. I haven't yet contacted the doc, but will look over the O2 usage... I have saved my rebreather mask... Just not looking forward to this... seems the older I get the h/a are more unpredictable as to when I get them, which SUCKS... I just pray to God that I don't start getting them while I'm working : (

Thanks again, I need all the support I can get... life hasn't been easy lately.. now this...gghhhrrr

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Guiseppi

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Re: THEY'RE BACK.... UGH, help please : (
Reply #3 - Jul 18^th, 2011 at 10:41am

I'm OCD...forgive me.... Grin

but you said re breather...I'm sure you meant the non re breather mask! Wink

The biggest change is on the rate of flow. Attempting to achieve hyperventilation, which for some means 25 LPM or higher, really seems to speed the aborts.

And yeah, the older I get, 51 now, the less predicatable the patterns are. Instead of 2 cycles a year, spring and fall, 2-3 months, I'm going almost 2 years remission, followed by an 8 month cycle. While NOTHING is universal, I've seen that pattern repeated by many others on the board as they age. I keep hoping I'll outgrow the damned things but then I'm an eternal optimist!

Joe

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bejeeber

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Re: THEY'RE BACK.... UGH, help please : (
Reply #4 - Jul 18^th, 2011 at 11:48am

Wendy isn't it just quaint how the beast especially loves to pop in at times when life has been throwing plenty of other curve balls? Sad

Between the D3, the O2, and lots of other stuff to bone up on, I think you can hit this beast back HARD though, and find yourself coming out the other side the winner and champion. Cool

The clusterbusters thing has really taken off, with all manner of otherwise middle American church going folk who wouldn't touch a recreational drug with a 10 foot hypothalamus embracing it amid reports of episodics shutting down entire cycles and chronics going into remission. There's a message board dedicated to it now too: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Since your last visit from the beast there was a Newsweek article on clusterbusters that can be found here: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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, and the practically no side effect mild acting RC seeds version of clusterbusting remains popular.

One last thing - shouldn't you take off that winter jacket for crying out loud?? It's hot out there! Cheesy

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« Last Edit: Jul 18^th, 2011 at 12:45pm 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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wimsey1

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Re: THEY'RE BACK.... UGH, help please : (
Reply #5 - Jul 19^th, 2011 at 8:06am

Hey Wendy. Do follow up on what Joe and BJ have said. Good stuff there. I would note your verapamil dose could be considered still on the low side. Effective range may go as high as 480-960mg/day. I take 640/day, am chronic, and seem to have them managed somewhat. I understand your fear of getting them at work. I have been using the imitrex tip regularly for awhile now and have found it be fast, effective and cost reducing. 2mg of sumatriptan are a lot easier on the system, work within minutes, and I still have two more shots in what used to be a one shot 6mg syringe. Keep us informed on your progress. God bless. lance

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Wendy1

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Re: THEY'RE BACK.... UGH, help please : (
Reply #6 - Jul 19^th, 2011 at 2:45pm

Ok, thank you all for your support... I am scared to death of these things starting again... I know that once I had the 'one' the cycle has started... just waiting for them to hit full blast. I am going to start the fish oil/D3 regimen tonite... Lance, I take 360m twice daily... do you think I should be taking more... my doc freaks about THAT dosage. It means so much to know you are all here for me. Ghhrrrr I hate these, as I sit here feeling the beast 'toying' with my eye : (

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Re: THEY'RE BACK.... UGH, help please : (
Reply #7 - Jul 19^th, 2011 at 4:53pm

Wendy1 wrote on Jul 19^th, 2011 at 2:45pm:

Ok, thank you all for your support... I am scared to death of these things starting again... I know that once I had the 'one' the cycle has started... just waiting for them to hit full blast. I am going to start the fish oil/D3 regimen tonite... Lance, I take 360m twice daily... do you think I should be taking more... my doc freaks about THAT dosage. It means so much to know you are all here for me. Ghhrrrr I hate these, as I sit here feeling the beast 'toying' with my eye : (

You might want to ask your DR about adding Lithium
to your daily meds with that added you may be able to cut back on your dose of verapamil.

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Wendy1 CH.com Veteran Offline Posts: 208 x1\|\|USA\|usa\|375\|96\|FL	Re: THEY'RE BACK.... UGH, help please : ( Reply #8 - Jul 19^th, 2011 at 8:52pm What does the lithium do? And can I cheat and ask (vs. going thru pages of posts) how the Fish oil/D3 has worked for others that have tried it. Also, just saying.... the one thing that REALLY stinks is the no drinking thing!!! God, please be gentle on me this cycle : (
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Wendy1 CH.com Veteran Offline Posts: 208 x1\|\|USA\|usa\|375\|96\|FL	Re: THEY'RE BACK.... UGH, help please : ( Reply #9 - Jul 19^th, 2011 at 9:00pm GREAT! I think I just jinxed myself... here comes the beast : (
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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: THEY'RE BACK.... UGH, help please : ( Reply #10 - Jul 19^th, 2011 at 10:17pm Lithium is a popular prevent for CH. It's taken daily, while in cycle, to reduce the frequency and the intensity of your attacks. Some use verapamil, some lithium, some have found when one or the other has stopped being effective, combining the two provides relief. Joe
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Re: THEY'RE BACK.... UGH, help please : (
Reply #11 - Jul 20^th, 2011 at 4:32pm

Guiseppi wrote on Jul 19^th, 2011 at 10:17pm:

Lithium is a popular prevent for CH. It's taken daily, while in cycle, to reduce the frequency and the intensity of your attacks. Some use verapamil, some lithium, some have found when one or the other has stopped being effective, combining the two provides relief.

Joe

^^ What he said Cool

Thank you Joe

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An eye for eye only ends up making the whole world blind.
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Wendy1

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Re: THEY'RE BACK.... UGH, help please : (
Reply #12 - Jul 23^rd, 2011 at 6:04pm

Just cking in.. I have started the fish oil & D3 and 360 verapamil twice daily.. I've had a few h/a, but ones I have been able to work thru luckily.. first time in 30 yrs tho, I got one while at work.. that was NOT fun. I'm really hoping that the fishoil & D3 work... usually by now (in the beginning) I've already been to ER a few times. pfdan to all!

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