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New to Cluster Headaches - Have questions (Read 7940 times)

boxseller

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New to Cluster Headaches - Have questions
May 21^st, 2008 at 3:18pm

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My boyfriend of 2+ years has been having cluster headaches for almost 25 years. The headaches started last week, he's been having anywhere from 3 to 6 per day and they last for up to three hours. These are the first one he's had since I've been with him.

He does not and will not take any narcotics. Is currently receiving Steroids and a medications that helps with dialation of his blood vessels.

As you are all aware the pain he suffers is horrible.

Please give me some suggestions on how I can help him or any new treatments that you have heard of.

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Charlotte CH.com Alumnus Offline Posts: 2385 Patterson,California Gender:	Re: New to Cluster Headaches - Have questions Reply #1 - May 21^st, 2008 at 3:24pm Just wanted to say "Hi and welcome aboard." It sounds like he is on the right path. Charlotte
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boxseller CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 14 x0\|Endicott\|USA\|\|0\|0\|NY,New_York	Re: New to Cluster Headaches - Have questions Reply #2 - May 21^st, 2008 at 3:27pm Thank you
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MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: New to Cluster Headaches - Have questions Reply #3 - May 21^st, 2008 at 3:51pm look to the left and read
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Brew Ex Member	Re: New to Cluster Headaches - Have questions Reply #4 - May 21^st, 2008 at 3:59pm Also be sure to visit the Supporter's Corner board. You can get to it via the main message board page, or use this link: 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: New to Cluster Headaches - Have questions
Reply #5 - May 21^st, 2008 at 4:37pm

Quote:

He does not and will not take any narcotics. Is currently receiving Steroids and a medications that helps with dialation of his blood vessels.

He is correct to not take narcotics for CH. They can and do cause rebound headaches and really don't help the pain very much. Even if it helped more...he'd have another problem to deal with anyway. Addiction.

However you say he's using Steroids????? and medications that DIALATE his blood vessels? That is incorrect and I hope you were just confused. When he is having an attack the vessels and arteries swell up to 20 times their normal size and what we need then is a vasoconstrictor not a dialator.

Can you tell us what meds he is using? oh yeah....and read read read here.

Sounds like he has a wonderful supporter in you, so give yourself a pat on the back from all of us who treasure our supporters.

Linda

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

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BarbaraD

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Hugs to ya

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Re: New to Cluster Headaches - Have questions
Reply #6 - May 21^st, 2008 at 5:30pm

What Linda said about the narcs. They don't help and do more harm...

Try a can of Red Bull at the onset of the headache. And melatonin at bedtime. If he's not on O2 - that's our FIRST suggestion - helps about 70% of us. Read up on the use -- has to be at least 15lpm and a nonrebreather mask.

Heat or cold packs (which ever one works for him) help sometimes.

Read read read.... we all react differently to different things. But you're on the right tract by being here. Welcome to Clusterville. If you can manage it get him on this site too. We DO understand the pain he's going thru and nothing he can say will be a shock to any of us.

Hugs BD

What don't kill ya, Makes ya stronger!

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boxseller CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 14 x0\|Endicott\|USA\|\|0\|0\|NY,New_York	Re: New to Cluster Headaches - Have questions Reply #7 - May 21^st, 2008 at 8:22pm Thank you all. I have a lot to learn. He did try O2 but not with Imitrex as I read in one of the articles. I will have him ask his doctor if he can try it again.
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chefjohn

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Re: New to Cluster Headaches - Have questions
Reply #8 - May 21^st, 2008 at 8:45pm

He shouldn't need both O2 and Imitrex at the same time. They are both abortives. He should get a perscription for O2 fromthe doctor and have a tank at home that delivers 15 liters per minute with a non rebreathable mask. Try it for 10 to 15 minutes and see if that works. If it doesn't work then try the Imitrex. I have both and I use the O2 at home and take the Imitrexwith me when I go out. If both work on their own he shouldn't have to use both together. Besides the Imitrex is expensive and you don't want o waste it if O2 will do the trick. Besides these abortives he should be on some preventive medication too. Consult your doctor and read info here on which meds are best for him. Also red bulls or other energy drinks help some people and melatonin at bedtime can be helpful with your sleep and can be purchased over the counter. Hope this info helps you. John

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just-squiggles

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Re: New to Cluster Headaches - Have questions
Reply #9 - May 21^st, 2008 at 11:01pm

Hello!
Welcome aboard.Being a supporter is a hard
job,supporters suffer their own kind of pain.You care
enough to be here trying to help him,that says a lot
on it's own.Two things you can do for him now,when
he gets hit,keep reminding him that it will end and that
you will be there for him when it does.Clusters rob us
of so much,don't let him worry that they may take you from him too.
   Although only his doctor can, or should,change his
medications,it would help if we knew exactly what he
is taking and at what dosages.
Take Brew's advice and visit the supporters corner.
Don't be afraid to vent there and get the support YOU
need.The fear,helplessness,frustration and all the other
emotions can be just as hard on the supporter as the
sufferer.
   Linda is corrrect in that narcotics are generaly useless
for CH pain and carry their own serious risks.
However,Verapamil,one of the most common prevents.
Is a vasodilater. "Essential hypertension: Verapamil produces its antihypertensive effect by a combination of vascular and cardiac effects. It acts as a vasodilator with selectivity for the arterial portion of the peripheral vasculature." --- Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to

Verapamils preventative effect comes
from blocking calcium ion channels rather than it's dilation effects.
Research has shown that calcium 2+ ions are directly
involved in the production of the pain singnal.
Keep reading here and learn all you can about this
monster.The more you know,the better your chances of
beating it or at least controlling it will be.Another place
you may want to do some reading is Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Linda_Howell

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Re: New to Cluster Headaches - Have questions
Reply #10 - May 22^nd, 2008 at 12:01am

I really feel I need to re-iterate this:

Quote:

medications that DIALATE his blood vessels? That is incorrect and I hope you were just confused. When he is having an attack the vessels and arteries swell up to 20 times their normal size and what we need then is a vasoconstrictor not a dialator.

Vaso-constrictors are any of the Triptans. 02 is a vaso-constrictor also...Please read read read...

« Last Edit: May 22^nd, 2008 at 12:01am by Linda_Howell »

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

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boxseller

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Re: New to Cluster Headaches - Have questions
Reply #11 - May 22^nd, 2008 at 6:49am

Hi:

I will keep reading everything I can, I have learned a lot already from all of you.

He would not do anything without his doctor's consent so that's not a concern. He has been suffering with this for 25 years and has been to several headache specialists around the country, two that I know of were in MD and WI.

If there is a new treatment that works we would run it by his doctor. I know a lot of you mention cost, we are very fortunate that money isn't an issue. But, so far all he has tried haven't worked for him. He has been hospitalized many times over the years when the attacks are especially severe and the times in between are short.

As far as not being there to support him, that's not an issue he is a wonderful man. His suffering breaks my heart to see but I will be there for him whatever way he needs.

Again, thank you all.

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boxseller CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 14 x0\|Endicott\|USA\|\|0\|0\|NY,New_York	Re: New to Cluster Headaches - Have questions Reply #12 - May 22^nd, 2008 at 10:18am Linda: The medication he takes takes care of the dialation of the blood vessels it does not dialate the blood vessels, I worded it badly. Thanks for your concern.
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Bob Johnson

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Re: New to Cluster Headaches - Have questions
Reply #13 - May 22^nd, 2008 at 10:36am

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Bob Johnson

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boxseller CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 14 x0\|Endicott\|USA\|\|0\|0\|NY,New_York	Re: New to Cluster Headaches - Have questions Reply #14 - May 22^nd, 2008 at 10:42am Thank you, I'll order both
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Qazpur

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Re: New to Cluster Headaches - Have questions
Reply #15 - May 22^nd, 2008 at 8:03pm

Linda_Howell wrote on May 21^st, 2008 at 4:37pm:

When he is having an attack the vessels and
arteries swell up to 20 times their normal size and what we need then is a vasoconstrictor not a dialator.

I hope that only happens in horror movies - surely an artery or vessel dilating up to 20 times its normal size will in most instances do some serious damage?

may your cycles be short and your pain-free days long...

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Brew Ex Member	Re: New to Cluster Headaches - Have questions Reply #16 - May 22^nd, 2008 at 9:40pm Qazpur wrote on May 22^nd, 2008 at 8:03pm: I hope that only happens in horror movies - surely an artery or vessel dilating up to 20 times its normal size will in most instances do some serious damage? Nope. Happens in your head multiple times during a cycle. Your guts are pretty flexible.
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Balanchine CH.com Alumnus Offline Posts: 238 x0\|Los Angeles\|USA\|\|0\|0\|CA,Cal Gender:	Re: New to Cluster Headaches - Have questions Reply #17 - May 22^nd, 2008 at 10:57pm I'll add my appreciation for your support too. I live alone, no family, and often wish I had someone to hold my hand... but that's where the people on this board come in. They're the best in the world! Sounds as if your partner has a terrific shoulder to lean on. Good luck to you both. David
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RichardN

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Re: New to Cluster Headaches - Have questions
Reply #18 - May 23^rd, 2008 at 12:16am

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

The above is a good one to copy and take to his doc . . . especially if it will aid in getting a prescription for 02.

02 is cheap, EFFECTIVE (for 70% of us), and NO side effects. I have some artery blockage and high cholesterol, so can't use triptans (like Imitrex), so 02 is my only abortive. I can usually kill him in minutes . . . MINUTES . . . if used early-on in the attack.

The multiple, daily attacks are nerve-wracking . . . when will the next one come?, how long will it be?, how bad will it get? 02 takes away a great deal of the very real FEAR of these things, knowing that you can stop him cold if you get to the 02 fast enough . . . . I've had five hits the last three nights, most killed at Kip 3-5 in under 10 minutes . . . . haven't had to "dance" since March (when I slacked off my preventative for a few days AND was around some of my triggers).

If he's having multiple attacks, I would suggest starting off with at least 4-5 "E" tanks (the green topped tanks . . about 3 ft tall . . . you see all over any hospital or doc's office), a 15 lpm regulator and a non-rebreather mask (the one with the bag). An "E" tank holds 680 litres. At 15 lpm, that's 45 min of 02. A low level hit can be aborted in 5-10 min. A Kip 6-8 may take 15-20 min . . . above that may take longer or possibly fail . . . which is another reason to hit it early-on. It does take a little practice but is a true miracle for most of us.

Okay . . . that's my 02 spiel.

Thanks for being a supporter. If it weren't for my wife/supporter, who found this board for me, I'm not sure I would've survived this horror we call the beast.

Be Safe, PFDANs

Richard

I can live with the beast as long as I don't have to "dance" with the bastard.

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Annette

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Re: New to Cluster Headaches - Have questions
Reply #19 - May 23^rd, 2008 at 3:18am

Qazpur wrote on May 22^nd, 2008 at 8:03pm:

I hope that only happens in horror movies - surely an artery or vessel dilating up to 20 times its normal size will in most instances do some serious damage?

I am sure Linda meant it metaphorically, no blood vessel can dilate up to 20 times its normal size or your head will be the size of a football field.

The average diameter of a main cerebral artery is about 4mm, 20 times that would be 8 cms in diameter. You wouldnt be able to fit 3 of those inside your skull. Its simple math really.

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Brew Ex Member	Re: New to Cluster Headaches - Have questions Reply #20 - May 23^rd, 2008 at 7:30am If it were 20 times its circumference, that's another matter entirely. The point is that it dialates enough to cause severe pressure on the nerves that surround it. This, in turn, causes the severe pain we know as CH.
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johnp CH.com Junior Offline I Love CH.com! Posts: 40 Gender:	Re: New to Cluster Headaches - Have questions Reply #21 - May 27^th, 2008 at 1:38am I get my most relef from DHE injections once a day but i have cronic cluster migrans , also migranal i use when i dont do my shot 2 spays in each nostril at night an in the morning
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