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marissak

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Newbie Here!
Feb 15^th, 2011 at 11:01pm

I guess i can start by saying that it is comforting that knowing that as i pour my heart out, this time someone actually understands what i really go thru. Dont get me wrong, my family and husband are very compassionate but it is hard for someone who has never experienced a CH to get it.

This is my first post to CH.com and i have suffered for over 9 years now. I am currently seeing a very good neurologist but even with the best doctor CH is still unbearable at times. I have tried every drug under the sun, all the preventatives, verappamil, topamax, etc. Imitrex gave me no relief, i get some relief from zomig but not enough. I use O2 and everyone in the world swears by it, it seems like i only get relief the O2 if my pain level is a 7 or higher. Anything less than that and the O2 doesnt help. Has anyone else seen that? I guess if the pain is less than a 7 I shouldnt be complaining.

After reading many of your posts, some of you have dealt with this much longer than me, its just a very long time to suffer with real relief especially when the periods of remission seem to get shorter and shorter.

It is just nice to know that there are other people out there that understand it, Im not crazy!

I have ready that many of you load up on Red Bull and energy drinks, i am just hoping for any tricks, there has to be something to get us all through the day Wink

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Batty

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I thought it was CH...but
my helmet is too tight!

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E'Port Cheshire UK
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Re: Newbie Here!
Reply #1 - Feb 16^th, 2011 at 2:11am

Hi marissak and welcome to the board!
I am a newbie too but I think I can confidently ask,
What is the flow rate (regulator) of your O2 setup?
Do have a non-re-breather mask?
And have you read the yellow Oxygen Info link on the left?
You say you have suffered 9 years? That's 9 yrs too many!

Some one will be along shortly to ask you the right questions marissak!

And yes, you are crazy, I am crazy...everyone here is crazy...
Crazy about being PF!

Respect and Best Wishes

Gary

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"An old Wolf may lose his teeth, but never his nature.."

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wimsey1

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Re: Newbie Here!
Reply #2 - Feb 16^th, 2011 at 8:06am

You've asked the right question Gary. Marissa, many of us have found that successful treatment of CHs requires a much higher level of intervention than would normally be prescribed and clinical trials have upheld this. For example, O2 is most effective in the 15-25lpm range, and higher. Verapamil in the 240-960mg/day range. Melatonin in the 9-18mg/day range. That kind of thing. Please tell us what doses you have taken, read everything on this site, write down any abortives or preventatives you have not yet tried, and learn, learn....learn. Blessings. lance

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Guiseppi

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Re: Newbie Here!
Reply #3 - Feb 16^th, 2011 at 9:47am

What Lance said! Many have said 02 didn't work, we find out they were using nasal canulas or re breather masks, at low flow rates, beginning well after the attack has started. All guarantee failure.

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Read this link for details. Used correctly it will even defeat those pesky shadows between attacks.

Your prevent meds. Verapamil is used by CH'ers at doses as high as 960 mg a day. The Blood Pressure doses that docs are used to for this med are generally too low for us. Some have found combining verapamil and lithium has worked as a prevent when either alone didn't help.

Give us a detailed run down of your regimen when you get a chance. Are you working with a qualified headache specialist neuro? GP's know squat about CH and garden variety neuros aren't much better. It's a highly specialized field and your best bet to navigate the treatments is with a specialist.

Welcome home.

Joe

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

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marissak

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Re: Newbie Here!
Reply #4 - Feb 16^th, 2011 at 10:50pm

Thank you for all of your information. It has become a wealth of information just in the two days i have been on it. I am sure it is going to help much more than i ever expected.

I have verappamil in the past and i could not tollerate it at a high enough dosage to see if it would be effective. I was having issues with being light headed and dizzy. After that we tried indomethicin, no response and then depokote and no relief from that either.

Currently i am taking topomax which does seem to help a little bit. They still come and they are still very intense. I have taken prednisone tapers but my problem with those is that the moment the prednisone is out of my system, it comes right back, it does give me relief for about a week so that is good news.

I do have a great neuro and he actually wants to try a different route with the prednisone. Rather than doing an 11 day taper, he has tried a 2 month taper. Obviously steroids are not good in long term use but he has is optimistic that is i do it for two months, there is a chance that it could put me into remission for up to 6 months rather than the cycle returning as soon as the prednisone is out of my system. Has anyone else ever tried this?? I am interested to know the outcome because i am seriously dreading 2 months on prednisone. 6 months cluster free could be worth it though.

As for the O2, i have only been using it at 10-12lmp so thank you very much for the link and all the great info on O2! I will crank it up my next go around and see what happens.

Thanks again for the suggestions!

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Stratocaster

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Re: Newbie Here!
Reply #5 - Feb 16^th, 2011 at 11:09pm

Hi...I am also new...I did a 6 week steriod regime and I think it helped my CH's. My case is not a good one to judge things from though because I have multiple types of headaches at the same time (lucky me). But the one pain I did notice was the sharp pain over my right eye seemed better as a result of doing a long round of 'rhoids.

Am I the only one that gets a regular headache with their cluster headaches? I can't be...when my severe pain subsides my whole head still hurts badly...sorry if I'm whinning...I'm deep in it right now...I can feel the electrical shocks building up over my eye as I type this. Too afraid to sleep, too tired to stay awake.

I really meant to send a warm shout out to you I swear!

We'll get through this...I think.

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wimsey1

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Re: Newbie Here!
Reply #6 - Feb 17^th, 2011 at 7:35am

Marissa, many of us are subject to secondary headaches following a cluster attack. I know I am. Usually I can treat them with simple OTC pain killers. Not always. Good luck with the extended pred' taper. Mine have always been of short duration (longest 2 weeks) but they can help and allow time for the topomax to build up.

Stratocaster, same as above. It's not unusual and often CHs can be accompanied by a trigeminal neuralgia as you describe. I had both attacks at once and it made for some interestingly complex pain. Good luck to you both and God bless! lance

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Guiseppi

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Re: Newbie Here!
Reply #7 - Feb 17^th, 2011 at 8:24am

Marissa, steroids work as they did for you, for most CH'ers. A block from CH while you're on it, as soon as you stop the steroid, the beast is back. For a very small percentage of CH'ers, a short steroid burst will completely abort a cycle.

Do crank that 02, people for who 02 did not work at all at 15 LPM, found 6-8 minute aborts by cranking it up to 25 LPM.

Talk to your doc about Lithium as a prevent. Don't be scared by the Hollywood zombie stereotype of lithium. I recently retired from a career in law enforcement. At 1200 mg a day, it blocks 60-70% of my attacks, and if I didn't tell you I was on it, you'd never know.

Many are obtaining moderate relief from a regimen designed to alter your arterial PH. Take a Magnesium, a Zinc, a Calcium Citrate with Vitamin D, and wash them down with fresh lemonade, up to 4X a day. It got me thru a tough high cycle last round.

As with all suggestions on this board, do run them by your neuro so we're not messing up his overall plan!

Joe

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

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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: Newbie Here! Reply #8 - Feb 18^th, 2011 at 9:27pm What Joe said... Then when ur ready for it to really end, Go to clusterbusters.com coach Bill
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bejeeber

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Re: Newbie Here!
Reply #9 - Feb 18^th, 2011 at 10:36pm

marissak wrote on Feb 16^th, 2011 at 10:50pm:

a 2 month taper. Obviously steroids are not good in long term use but he has is optimistic that is i do it for two months, there is a chance that it could put me into remission for up to 6 months rather than the cycle returning as soon as the prednisone is out of my system. Has anyone else ever tried this?? I am interested to know the outcome because i am seriously dreading 2 months on prednisone. 6 months cluster free could be worth it though.

I've been on high dose Prednisone for close to 2 months before. It screwed me over royally. It'll do permanent damage in myriad ways including destroying your immune system. This place and clusterbusters.com are littered with people who've experienced the health destruction of long term high dose prednisone. The claim that 2 months will put you into remission for 6 months? I haven't heard of that before - I'm glad your BS meter is going off.

The clusterbusters approach is so much less drastic and so much more likely to have long lasting preventative results. Please read this Newsweek article about it and CH:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Then go to this introductory topic at the cb message board: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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« Last Edit: Feb 19^th, 2011 at 3:00am 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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