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gregoryvincent - New Member (Read 1071 times)
gregory vincent
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gregoryvincent - New Member
Dec 21st, 2009 at 6:11pm
 
Hi all,
my name is gregoryvincent and i am a new member.
I have been a cluster headache sufferer for approx 15 years.

My cluster headache pattern is that i usually have a couple of years between a 1 to 2 month attack period.

At one time i was able to predict the duration and timing of my headaches. However, i have had them for approximately 3 weeks now without rhyme or reason to the cluster patterns.

For instance yesterday i didnt have any attacks. The nite before i would have an attack just about every hour on the hour.

Usually the attacks last anywhere from 15 mins to an hour ....

Today i was doing fine until approx 12:45 pm. The attack lasted 4hrs....i was going out of my mind...really losing it.

To make matters worse, I am a construction manager and was laid off 4 months ago and could not keep up my medical coverage. So i have been doing this drug free. Last week i went to the emergency room where they gave me Percoset, Reglan & Oxygen.....nothing worked. I have used imetrex in the past but it was more or less "hit or miss" when it came to its effectiveness.
Also, I am a recovering addict and do not want to use any habit forming narcotics...

ANY IDEAS????

A friend just forwarded me this site ....i am truly glad to find you guys!
Thank you,
Gregoryvincent
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deltadarlin
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Re: gregoryvincent - New Member
Reply #1 - Dec 21st, 2009 at 7:18pm
 
Hello Gregory.  Glad you found this site.  The O2 that is given at the hospital isn't at the right lpm for clusters.  And I would also imagine that by the time you got to the ER, you were well into the headache.  O2 works best when used at the onset.  Quite a few people on here use welder's O2.

Narcotics don't do much for ch anyway.  There are a lot better choices out there.

Read, read, read

There'll be more along to talk to you.

Carolyn~aka~deltadarlin
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Joni
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Re: gregoryvincent - New Member
Reply #2 - Dec 21st, 2009 at 7:23pm
 
Hi Gregory-
Congratulations on being a recovering addict!  My brother was an addict as well and we were very close so I went to all the in-patient and out-patient family meetings with him.  He also suffered from clusters, but only when he was straight.  I am sorry for your battle.

Narcotics don't help with cluster headaches anyway so nothing lost there, and that is lucky for you.

With no insurance, I guess your best bet is oxygen but I don't use it so you will have to wait for someone else to come along and tell you about it. 

You can also try Melatonin at night and chug energy drinks like Red Bull at the onset of a headache.

If you could see a doctor and get Verapamil for prevention, it isn't expensive.  That's what I have taken the last 2 cycles.  I have had clusters for 25 years.


That's all I've got.
Joni
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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lorac
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Re: gregoryvincent - New Member
Reply #3 - Dec 22nd, 2009 at 10:24am
 
Welcome Gregory
    O2 is my life saver.   And if you don't have insurance, some of the O2 people will work with ya.
    I get my tanks filled for $10.  each.  and there is two companies in town that have done that for me.
both major co.s.

     stick around, and keep us posted as to your progress.   we are with ya!
            lorac
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Callico
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Re: gregoryvincent - New Member
Reply #4 - Dec 22nd, 2009 at 5:38pm
 
Hi Gregory, and welcome aboard!

I'm another who pushes oxygen use around here.  I used to think it didn't work for me either, but then I got turned on to higher flow rates and now can knock out a hit in 5-8 mins if I get to it soon after the onset.  If I wait all I can do is ride it out.  Read the oxygen info section to the left of your screen carefully.  If it is not used properly its value is diminished tremendously.

Until you can get set up with a proper O2 setup I would suggest chugging an energy drink at the very first sign of an attack.  I can often abort a hit within a very few minutes, or at least knock it down to a somewhat manageable level.  I prefer 5Hr Energy because it is a small bottle and relatively inexpensive.  It has a high B vitamin concentration to go along with the caffeine and Taurene which helps with my mood.  It also doesn't tear up my stomach like some of the others do.

Until you can get a preventative set up with your Dr you might want to try Kudzu.  You can purchase it online or at a health food store that specializes in organics.  I have found it to be as effective for me as Verapamil and Lithium and without the side effects.  There is further info available if you search through the Meds and Treatments board, or PM me if I can help further.

There is a tremendous amount of info available here.  Read, read, and then read some more.  As questions come up, ask!  That is why we are here.  Someone answered ours early on and we are just passing along what we have learned.

Jerry
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
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bejeeber
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Re: gregoryvincent - New Member
Reply #5 - Dec 22nd, 2009 at 8:52pm
 
Yep you might benefit from that high liter flow style O2 that our ignorant medical professionals don't have a clue about yet.

From what I've seen on here so far there is an incessant stream of CH sufferers coming on and reporting imitrex doesn't work. Whenever I've seen that and asked for more details it has turned out that they weren't prescribed the most effective form, injections, most often they've been prescribed the least effective for cluster, pill form. Stupid stupid doctors.

What form of imitrex have you tried gregory?
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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.
bejeeber bejeeber Enter your address line 1 here  
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BarbaraD
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Re: gregoryvincent - New Member
Reply #6 - Dec 23rd, 2009 at 7:18am
 
I'm another O2 pusher. It works (at a high flow rate - 15-25 liters per minute with the RIGHT mask) for about 70% of us to abort the CH within minutes without any drugs.

I keep Cafergot with me when I go out (away from my O2), but VERY SELDOM have to take it.

Melatonin (OTC) at 12-15mg at night before bedtime helps a lot of us get thru the night hits (gets us thru the REM sleep where the CH hits) - my neuro swears by it.

But the secret to all this is getting to it at the FIRST SIGN of a hit -- DO NOT wait till it's full blow (I know I know -- sometimes you can go from 0-10 in 4 seconds without warning, but those times are rare).

But the O2 is your BEST defense - but it MUST be used PROPERLY (read the o2 tab on the left and LEARN the PROPER use). A lot of people (me included) have tried it in the past and said it didn't work, only to find out later that it did.

Nuther secret -- Sometimes a strong cup of coffee when I feel that "twinge" will send Mr. Demon on his merry way in a hurry (ok, maybe a pot of strong coffee!).

One thing I"ve learned over the years is when I wake up - I GET UP -- trying to get that extra 5 minutes sleep will bring on a hit every time. It just isn't worth it.

Now, Welcome to Clusterville, your new home. We're a bossy bunch and a nosey bunch, but we're here to help and we're available 24/7. If you need "human" contact just PM me and I'll send you my phone number. I'm an OLD broad and have seen and heard it all, so if you want to talk.... I'm always here (well most of the time -- if not leave your number and say CH and I'll call you back).

Hugs BD Kiss
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