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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Cluster headache and cancer
        
(Message started by: Bert on May 2^nd, 2006, 11:43am)

Title: Cluster headache and cancer
Post by Bert on May 2^nd, 2006, 11:43am

I'm new on this board and I was wondering if anyone could give me information on the following subject; in april 2003 I was diagnosed with cancer ( colon cancer).
I was treated with chemotherapy and radiotherapy. The treatments were succesful and the cancer has been away since. In May 2004 I had my first terrible headache and a few months later doctors in hospital confirmed my fear: cluster headache! The severeness of the attacks has been progressing worse and worse. According to the doctors there is no relation between the cluster headache and the cancer and its treatments.
I personally doubt this conclusion as I have never suffered from headaches until May 2004.
Does anybody have information?

Thanks, Bert

Title: Re: Cluster headache and cancer
Post by Richr8 on May 2^nd, 2006, 12:03pm

Hi Bert,

Welcome. From what I know about CH, there is no correlation to the treatments you have mentioned ,or to anything specific as far as I know. We have all had our introduction to CH seemingly out of no where for no particular reason . There are surveys on the left panel that will summarize all of the experiences of the folks on this board.
Sorry you are here, but glad that you found us. There is no better resource on the planet for coping with this horrific condition. Read all that you can, and feel free to ask whatever you want. the folks here totally get it and will help you however they can.

Title: Re: Cluster headache and cancer
Post by LeLimey on May 2^nd, 2006, 12:11pm

Hi Bert
Its nice to meet you, just a shame it has to be because of CH!
I think you'll find the incidence of both Cancer and CH here to be uncommon, there are people who have had both, who have both and for whom both occured in close proximity but not enough for there to be a definite link.
Cluster Headaches are caused by a faulty hypothalamus (or pineal gland :) ) within the brain which needs something to trigger it. Its possible it was triggered by your cancer/treatment but they would NOT have been the cause.
"Funnily" enough, I had colon cancer in 2004 which was discovered extremely early on, I was about as lucky as a girl can get. It sounds like you are too. To have had a successful treatment followed by a speedy diagnosis of CH, might seem very unlucky but it is actually VERY lucky. Some people wander for years without diagnosis. For both conditions.
You are a fighter and a survivor, you've beaten cancer and you can beat CH.
There are alot of meds and treatments out there, both conventional and alternative. What have you used to treat your CH so far and how has it helped? The more we know the more we can help you!
Looking forward to hearing more from you
Helen

Title: Re: Cluster headache and cancer
Post by Bert on May 2^nd, 2006, 12:27pm

Hi Lelimey,

So far I used Verapamil and Imigram, these are the brand names in Holland. I don't think they are prescribed in the UK or USA under the same name. Verapamil does something with your veins and Imigran must be injected into the leg to cut off the attack.

Best regards, Bert

Title: Re: Cluster headache and cancer
Post by Richr8 on May 2^nd, 2006, 12:38pm

Verapamil (480mg) is my preventative also. It seems to work well but takes several weeks to take hold. Have you had any experience with Oxygen? It is my primary abortive and works well for a lot of folks.

Title: Re: Cluster headache and cancer
Post by RichardN on May 2^nd, 2006, 12:53pm

Hi Bert and Welcome

A few months ago I posted a thread, "Cancer, Chemo, and Clusters" as I had the opposite reaction to same. I was diagnosed with bladder cancer 5/03 following a bout with meningitis (3/03) which came very close to killing me.

My CH started 1/01 . . . found this great place 2/02. . . . and from then on had some control over the beast. Had four surgical procedures for the cancer, the last one being 2/04 (cystectomy . . .removed bladder and prostate). During all of those, I got some strange looks from many medical personnel when I expressed more fear of CH than of the procedures . . . . but I will say that none of the three hospitals I was in argued at all at my request, "I require high-flo 02 available at all times to abort CHs" . . . . and met several staff that seemed interested in the condition (CH) and use of 02 to abort.

Following the (major) surgery, cancer was present in lymph nodes, so had three months of chemo. Although I carried my backback with regulator and "B" tank with me to all chemo sessions . . . . never had to use it. By the end of chemo, I had quit carrying the tank with me. Then, a month or so after the end of the chemo, I was at a local bar . . . . had one Busch NA (non-alchoholic) . . .then they ran out, and since I hadn't had an attack in while, ordered a regular Busch . . . within 15-20 min, had the second worst attack ever . . . gave'em a hell of a show.

So . . . . I guess I'll have to agree with the above . . . . cancer/chemo probably doesn't have anything to do with CH one way or the other . . . . but I'm still curious why the chemo seemed to quell my attacks (possibly benedryl or whatever they run through your veins along with the chemo drugs.

The good news is . . . you're definitely in the right place to get the info you need to battle our common beast. More info/caring/sharing here than you'll find anywhere from folks who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: Cluster headache and cancer
Post by LeLimey on May 2^nd, 2006, 12:55pm

Hi Bert, Imigran and verapamil are both brand names in the UK too.. Imigran is Imitrex in the US, that's the only difference so far!
Verapamil is a "preventative".. it works on the cycle to prevent (hopefully) hits occuring in the first place.
Imigran is an "abortive" used for acute treatment, ie once an attack is on the go. You should use it at the start of a hit, the longer you take to use it the longer it takes to work. I've never heard it having to be injected into a leg before.. most people inject into their arms or tummy, anywhere that's fleshy (I prefer that description to fatty! LOL)
As Rich says, have you tried O2? Used at a high flow rate of 15 litres per minute with a non rebreather mask or a clustermasx (www.clustermasx.com) I can abort a hit in 5-7 minutes which is as fast if not faster than imigran.
How do you find they are helping you? Are you having much success with them? As compared to before you started them I mean.

Title: Re: Cluster headache and cancer
Post by vietvet2tours on May 2^nd, 2006, 1:04pm

Oxygen rocks

Title: Re: Cluster headache and cancer
Post by Richr8 on May 2^nd, 2006, 1:13pm

on 05/02/06 at 13:04:52, vietvet2tours wrote:

Oxygen rocks

Yeah. Tell us that you have tried, or will try Oxygen, or we will not stop asking. If it works for you , which it does many, it's the best abortive there is.

Title: Re: Cluster headache and cancer
Post by Bert on May 2^nd, 2006, 1:17pm

Hi Lelimey and RichardN

I haven't tried oxygen but I'm seeing my neurologist next Thursday so I will bring up the subject. Verapamil can be helpful but only in high doses. I don't like Imigran because I had so many injections during my cancer period and Imigran makes me very tired. As my hits always come during the night I'm tired as can be so I must save as much energy as possible to be a bit useful for my employer.

Title: Re: Cluster headache and cancer
Post by RichardN on May 2^nd, 2006, 1:42pm

Hey again Bert

Don't just bring up the subject of 02 with your doc. Go in armed with the info off this board . . . much recognized (by medical community) info here regarding same. DON'T leave his office without a script.

I can't take triptans (Imegran/Imitrex) due to arterie blockage and high cholesterol . . . so 02 is my only abortive . . . . like many here, I can kill the beast in minutes if used early-on in the attack . .. . takes longer for the night hits.

Read up on Melatonin and kudzu. . . . and "water X 3" (link on left). I am convinced that water therapy has been beneficial to me and many others.

Read, read, read . . . . and ask any questions you might have . . . someone here will have an answer for you. We're all different and different things work for different people, but one of my favorite sayings here is, "nothing works for everyone, but SOMETHING works for everyone". Here, you have a very good chance of finding the "something" that works for you.

Oh . . . and don't forget to specify you need a 15 lpm regulator (NOT the 8 lpm) and a non-rebreather mask (or clustermask). This is VERY important to be effective.

Be Safe,

Richard

Title: Re: Cluster headache and cancer
Post by Jasmyn on May 3^rd, 2006, 5:29pm

Welkom Bert.

Ek is baije jammer om te hoor dat jy deur soveel pyn moet gaan.

Hier sal jy definitief die beste raad en ondersteuning kry. Jy is nie meer alleen nie.

Suurstof is een baije goeie alternatief as jy nie will spuit met Imigran nie. Hou ons op hoogte na jou neuroloog afspraak.

Ek wens jou die beste.
Groete Jasmyn

Title: Re: Cluster headache and cancer
Post by vietvet2tours on May 4^th, 2006, 11:47am

on 05/03/06 at 17:29:45, Jasmyn wrote:

Yip what she said fer shore.

Title: Re: Cluster headache and cancer
Post by Bert on May 4^th, 2006, 12:10pm

Hello everyone,

Just got back from the neurologist. I have to increase my Verapamil to 480 ngrs en YES, he agreed, oxygen is a very good alternative for Imigran. So he prescribed Oxygen. No more injections, breathe in, breathe out. I will let you know as soon as I get my new companion in the battle against the Beast.

Best regards, Bert

Title: Re: Cluster headache and cancer
Post by RichardN on May 4^th, 2006, 1:13pm

Congratulations on the 02 Script [smiley=thumbsup.gif]

Let us know how it works for you.

Be Safe,

Richard