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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Some random thoughts
        
(Message started by: Thomas_Martin on May 7^th, 2005, 6:27pm)

Title: Some random thoughts
Post by Thomas_Martin on May 7^th, 2005, 6:27pm

Hey everyone.

Haven't been active here even though I registered some time ago. I've had cluster headache about ten years now and never really put a lot of thoughts into it other then the pain. But a year ago something strange happened when I was in a cycle that wouldn't end.
To sum things up, I started getting clusters when I was about 18 years old. My father had them, but kept it a secret. It wasn't until I told him that I was having servere pain in my upper jaw, close to where it connects to the skull. I told him about the running nose and the eye feeling like it would pop. He said that it was clusters and he told me what it was.
We went to a neurologist and I got diagnosed with it. When the cycle had passed, after about 10 weeks. I was given some pills to stop the attack( I wouldn't take any needles as I really wasn't very comfortable with the idea that I had to inject something into my leg).

3- 4 years passed and I got hit again and I countered it with imigran(needles this time as the pain from the needle couldn't be worse than my headaches). Again a couple years passed and again it happened. Was put on verapamil try to remove the attacks which worked. Allthough I wasn't very comfortable with the amount I had to take. I was getting way more then was the maximum dosis advises in the pamphlet that came with the drug.

Anyway, when I lowered the amount of pills the attacks came back, not as powerful but they were still there. I had been taking the drugs for about 3 - 4 months with some days downing the amounts to see if my cycle was done. All though it seemed to have gone I would still get some attacks a couple of times a week. This got me wondering if the drugs had for some reason prolonged my cycle or broke it off its normal 10 weeks.

I couldn't figure out why it was still around, the attacks didn't feel like they were coming at certain times. Would get hit frequently at night, but not to often during the day.

This kept going for close to a year and then suddenly I just got the idea that it was something that I was eating that where causing the attacks. I found out that Wine and chocolate can be triggers for people with migrane and even though I wasn't eating chocolate every day I was eating it often. So I said what the hell and tried laying off it for a couple of weeks and presto my attacks disappeared.

Now I'm sitting here and being a bit stumped as I haven't read anything about this before that eating chocolate could prolong an attack and keep it from going away. Just curious but do any of you people got certain triggers that you shouldn't use even when your out of your cluster?

Regards
Thomas

Title: Re: Some random thoughts
Post by Bionic_Daddy on May 8^th, 2005, 12:28am

Hello Thomas,
Very interesting! I've been chronic for 5 years. I just underwent the D.B.S. ( Deep Brain Stimulation )surgery on 2-1-05. I no longer get HA's unless I eat, Meat, Milk, MSG, Sodium Benzote, cheese, chocolate & several other preservitives. My wife & I track every HA & diet daily. It is a PROVEN FACT in my case these are my triggers. I see the Director of Allergy at UCLA next week to try to figure out why. I tried a Whey Protien shake last week & had a KIP 10 forty five minutes after sleeping. I'am testing foods weekly to try to figure out this madness! My Neurosurgeon & Neurologist believe food may be a huge trigger in Clusters. After I see the Allergy Doc. & come to some conclusions I will post it. So in answer to your question, YES.
Bionic Daddy

Title: Re: Some random thoughts
Post by BobG on May 8^th, 2005, 3:28am

Quote:

This got me wondering if the drugs had for some reason prolonged my cycle or broke it off its normal 10 weeks. I don't know about verapmil but many people are of the theory that Imitrex will cause rebound headaches and cause attacks more often and keep them around longer. I have never had any experience with either drug so don't go by what I say.

This kept going for close to a year and then suddenly I just got the idea that it was something that I was eating that where causing the attacks. I found out that Wine and chocolate can be triggers for people with migrane Alcohol is a trigger for most clusterheads when in a cycle, but not all. And some folks have warned us that chocolate is a trigger but it is mostly a migraine thing.

So I said what the hell and tried laying off it for a couple of weeks and presto my attacks disappeared. Laying off is probably the best way to go. But, after 2 weeks the clusters may have just run their course. Or not.

I haven't read anything about this before that eating chocolate could prolong an attack and keep it from going away. Like I said above, it seems to be more of a migraine sufferer's problem.

Just curious but do any of you people got certain triggers that you shouldn't use even when your out of your cluster? For me, not really. There are some oders that will bring on shadows if I'm exposed to them too long.

Title: Re: Some random thoughts
Post by Bob_Johnson on May 8^th, 2005, 9:27am

There is so much variation in the experience of clusters that it suggests both that this is a much more complex disorder than is, generally, recognized and that knowledge is still quite limited.

Effect of alcohol: report from Europe several years ago that white wine didn't trigger attacks but red wine and distilled spirits did. The assumption is that there are complex chemicals missing in white wine which are triggers--but don't know that this has been explored yet. The point again, much more complex disorder than we understand.

You don't need to be concerned about the high dose of Verap. you found necessary. This is a well recognized fact both on ch.com and among headache docs. No problem unless you have some clear side effects which, of course, should be reported to your doc.

Title: Re: Some random thoughts
Post by Thomas_Martin on May 8^th, 2005, 10:35am

Thanks for the answers. It helps when you know that your not alone.

The part that I found strange was that fact that I don't seem to be out of my cycle, even though its been two years and the fact that I don't get attacks unless I eat chocolate.

Alcohol such as beer doesn't trigger an attack, although it did when I had the first cycles. This gets me thinking that I'm not in a cycle, sort of, but can get some kip 7-8 shadows from eating chocolate.

Regards and lots of love
Thomas

Title: Re: Some random thoughts
Post by sandie99 on May 9^th, 2005, 9:52am

Thomas,

that was interesting. Although chocolate isn't a trigger for me. I've never been much of a chokkie eater and the last time I had one was Christmas 2003. But I do get lots of ch attacks...

My "triggers" are warm shower (sometimes), drinking cold water (sometimes), the scent of incense (twice), cold weather (sometimes) and warm, sunny day (sometimes). Otherwise ch comes and goes when it wants to.

Best wishes,
Sandie

Title: Re: Some random thoughts
Post by Sandy_C on May 9^th, 2005, 5:22pm

I don't seem to have food triggers, at least nothing that I can pinpoint. I will, however, get a major CH just by having some woman (or man) walk by me doused in perfume! I absolutely will not walk into a department store through the perfume section, whether in cycle or out (why take the chance?). I received a magazine a couple of weeks ago that had one of those smelly sample cards in it. The minute I opened the mag I knew it was too late. Sure enough - was hit with a kip 8 about 20 minutes later. Why do they DO these things? What about people with allergies? Geez, you'd think somebody in the magazine business would have a half a brain.

Sorry, just venting.