Cluster Headaches

[steelsmith]

Anyone else?
I just started a nice new round of them after several years of peace, they are coming 2 times a day now. Damn,,,

[eShirl]

1. a good friend of mine had them

He was enthusiastic about the Cluster Busters website; information from other sufferers about what helped them, led him to find a way of treating it (psilocybin) that was right for him.

https://clusterbusters.org/

[steelsmith]

5. Thank you so much for the link.

They are back with a vengeance, first time I have ever thrown up from them last night. I'm on several drugs to prevent them but all of a sudden they are back

[Smarmie Doofus]

2. It's been a LONG time. But....

... they are pretty fucking unforgettable.

I read a lot about them in the "old" days. One pattern that was pretty common was that most people "out-grew" them.

I think the most common pattern was that they tailed off (i.e. in frequency) in one's twenties and thirties.

Merciful gods..... that turned out to be my pattern as well. They were bad in my twenties... but relatively infrequent. Then the frequency increased in my late twenties. So did the severity.

I'm 60 now. My last bout.... and by far the most excruciating... was *around* 1990, 91 or 92, I'd say. So I was a bit shy of 40, I guess. Drove myself to the emergency room in the middle of the night with an icepack over one eye. Horrendous, unrelenting pain.

That series... in the early 90's was my last bout w. clusters. Not much is ( or WAS) known about clusters. Enderol was occasionally prescribed. But not for me. Nothing else worked, pain-wise.

(I remember when I was much younger , a chiropractor seemed to interrupt the pattern and reduce the frequency of what I was experiencing. But eventually the bouts returned.)

The "good news": you don't die from them... as far as I know. That feels like a mixed blessing when you're in the middle of one... as I think Joan Didion said about migraine, cluster's kissing-cousin. ( I TOLD you I read a lot about them.)

The bad news is they ... as you are aware... a nitemare.

If you're a lot older than 40, I'd be more careful of a "cluster" diagnosis. For instance, if I had one now ( at my age, after being cluster-free for so long) I'd assume it was something else. And get myself to an internist.

Good luck.

[steelsmith]

6. I heard that about diminishing with age,

But I am an unlucky one, My latest doc said they don't always go away... I'm 59 and been out of the cycle for 4-5 yrs, and thought I had it licked.
Mine started about 30 trs ago, some good years some real rough, I have had runs of 3-4 a day, and used so many imitrex inhalers my sinuses are ruined. Now I have to start all over with a new doc who seems to understand, but is just a GP. It seems we sufferers know more about them then most docs.

[Smarmie Doofus]

9. It sounds goofy, but look into chiropractic.

My recollection (no doubt a little distorted by retelling over the years) was that he essentially ended ( or at least interrupted) an 'every-single-day' cycle I was going through at the time.

My early mid-20s. ( I remember telling people it was as if he had "turned-off a switch".) But they came back later.

My impression is chiropractors don't really know what they're doing, but it stands to reason that if you move a lot of stuff around ... esp in the upper spine and lower cranial area where the neurology is so dense and complex..."something's got to give." (And be careful... that can work out in any # ways. Some of them unpleasant. ) In my case, it seemed to help significantly.

In the 70's and 80s all of the popular literature was about *migraine*, not clusters. So my info is hardly state of the art. I'm thinking ..... and hoping... that there may be more practical info available now, specific to clusters (at least to MDs) than there was back then.

GPs are fine but they can't know everything about everything.

[RGinNJ]

3. Sorry to hear that your a fellow suffer.

My first round started when I was 45 years old. Now 8 years later I am chronic. I get hit 2 or three times a day every day. I hope that you have a good neurologist who has experience with clusters not just migraines.

You have all my sympathy good luck.

[steelsmith]

7. And I am so sorry for you

RGinNJ, I have had that frequency before, it is almost impossible to live with. I had a doctor break a cycle like that with a couple of courses of cortizone lasting 2 weeks, the headaches subsided very quickly, but came back after the first round, but were gone for a year after the second.
I wouldn't wish these on my worst enemy. nobody knows what kind of pain they are.

[libodem]

4. The stabbing eye pain

Sounds so much like a migraine. I've had a lifetime of those. I've read some about histamine headaches are they similar to those? I don't recall the physiological cause of cluster headaches. Do they know what causes them?

Sorry for your suffering. I get the whole idea of no pain meds capable of relieving them. My migraines only responded to imitrex.

[steelsmith]

8. Surprisingly

They seem somehow related to the temperature regulating part of your brain, it is not unusual for one side of your forehead to be several degrees colder than the other.
Although they are unrelated to migraines, some of the triptothin drugs help with clusters.

[libodem]

10. Very interesting

Wonder if those ice pillows would ease the pain. I feel so sorry for anyone with chronic headaches. I think it's the worst kind of pain. Mine were awful but infrequent. Best of luck to you.

[Smarmie Doofus]

13. I said ice-pack upthread but ... you're right.

I meant hot water bottle.

Wet heat. The only.... temporary but significant .... relief i remember finding was standing under the shower w. the water.... as HOT as I could stand it... running directly on the left eye.

Pain comes back as soon as you step out of the shower, but when you're in the middle of one of those MFers any kind of relief is better than none.