August - September clusters

[ClusterTown]

I was just wondering, from episodic suffers, do your cluster attacks come at the same time every year?  I had chronic cluster headaches for a long time and now they just show up in mid August thru September.   It also seems like each individual attack lasts longer now, for example I had a brutal 3 hour cluster headache last night!  3 frickin hours of insane amounts of pain ... 45 minutes is bad enough.

[Bejeeber]

It also seems like each individual attack lasts longer now, for example I had a brutal 3 hour cluster headache last night!  3 frickin hours of insane amounts of pain ... 45 minutes is bad enough.

My individual hits eventually grew to be much longer too - around 3 hours, and I would wonder if there could be some "pent up fury" sort of effect when a hit would break through after several had been aborted (I've always been episodic).

I'm not sure how common it is for this most unwelcome development to happen over time.  :-?

[Brew]

I was just wondering, from episodic suffers, do your cluster attacks come at the same time every year?  I had chronic cluster headaches for a long time and now they just show up in mid August thru September.   It also seems like each individual attack lasts longer now, for example I had a brutal 3 hour cluster headache last night!  3 frickin hours of insane amounts of pain ... 45 minutes is bad enough. 

You doing anything to prevent this from happening? That's kind of why this site was created.

With the advances made in treating this condition in the last few years, a three-hour attack should be almost a thing of the past.

[Purple]

Until I came to Clusterbusters, I never really noticed my cycles came at any specific times. When my sister in law told me (my brother is (was?) a sufferer and she was the one who researched and diagnosed him, and me) some 20 years ago that they come at equinoxes and/or solstices, I just didn't believe her and went on suffering and not believe. But she was right. My cycles start around equinoxes or solstices mostly.

Are my attacks longer? hmmm no... hard to tell, I learned how to control them. I learned how to control my hypothalamus (not knowing this is what I was doing but most probably that's what it is), and then I discovered that ice was a good aborter some 10 years ago, then coffee, so...

So I have been more and more able to control the attacks and not let them grow higher than Kip 5 or 6, usually within 30 minutes and even less, as where when I was young, it was Kip 7 to 10 mostly all the time.

Even recently though, some attacks go out of control and reach 7 and +

When they reach 7+, they last long, hours, yes, and a very strong shadow remains sometimes for 8 hours, with level of pain up to Kip 5, but the it's not a growing pain anymore but a stable one. I'm then able to fall at some point in some kind of weird state ressembling sleep for a few hours, but with the pain remaining stable, as I say, up to 8 even 10 hours, even after I emerge from that weird sleep. After one of these, a bump grows on my right temple, and the following attack finds its way easy.

But as Brew said, there are ways... I used Zomig nasal spray (zolmitriptan) for a few years, and that stops the attack in seconds, but I hated the side effects, and that of Verapamil also, which brought me here in early 2012.

This cycle, I was able to abort an attack once with a SPUT (search for a recent thread on this), and I just found my box of Zomig I had lost, but I didn't use it. I've had a few bad ones this summer but I'm usually able to abort them before they grow with ice and coffee.

I don't use oxygen, probably I should, but cafeine really helps (energy drinks or coffee).

The trick is to get to the abort solution in time and not let it grow. I did learn to emerge from sleep and get up as soon as the germ of pain sprouts, and rush to these aborters as soon as possible. But still, some of the attacks are uncontrolable. I don't think they would resist the Zomig (or Imitrex shot if my neuro wanted to precribe me this), but I really hate the stuff (and as I said, had lost my box of it until 2 days ago)

Basically, the trick is to learn to control them somehow before they reach a point where they can last longer.

I peeked at your other posts quickly... my neuro when I was seeing her didn't want to prescribe me oxygen either, she said it was just pushing the attacks back to later. Last time I saw her, I got a little mad and she got her pad out to do so, shaking her head, but then I told her I didn't want to go the official way anymore and was turning to busting, and I didn't see a neurologist since then... and managed with other abort solutions.

Really, the trick is to find ways to not let them grow in bad attacks

[ClusterTown]

Thanks for the tips Purple.  I  can usually abort at the beginning of an attack drinking multiple red bull  cans real fast and doing push-ups (for whatever reason, that seemed to abort them last cycle).  That just isn't working this time around.  I know what you mean about the shadow remaining, I've been getting that too. 

I am going to try and get some oxygen prescribed. Hopefully that will do the trick.

[CHfather]

CT, keep us informed about what happens with getting oxygen.  I also think Brew was suggesting, and Purp was talking about, busting, which you seem to be in a good position to try.  Clearly, you now need some other strategies -- oxygen, busting, other alternatives (D3, for example), or conventional meds.   Let us know what you're doing about all that, too.

[Bejeeber]

That sounds like a good new abortive plan C-Town, and if you can't get it prescribed for some reason, in the USA at least you can just get the same stuff from a welding supply without prescription.

I think it'd be worth your while to get a high flow 100% O2 set up - I know that's what I need when I get to the point where the "weaker" abortives like Red Bulls plus vigorous exercise such as push ups aren't working.

Also agreed with CHF's ideas for preventatives such as busting and D3.

[GeorgiaLamar]

Oxygen is a must for a Clusterhead.  I could not imagine a cycle without oxygen anymore.  Its been a lifesaver for me,  three hour attacks should be a thing of the past. 

I am all about avoiding as much pain as possible and oxygen is the only thing that has really helped. 

[ClusterHeadSurvivor]

ClusterTown. I perosnally am not one for recommending medicinal treatment but let me say I feel your pain. I am very sorry you had to suffer such long attacks. I am chronic and I have had countless 3 hour attacks.

There is a great amount of information people are advising you with, perhaps consider some of them, in solidarity we are all here for the same reason. We suffer we survive,we support.

Wishing you PFD.

[Ricardo]

I was just wondering, from episodic suffers, do your cluster attacks come at the same time every year?  I had chronic cluster headaches for a long time and now they just show up in mid August thru September.

Same here.  I'm chronic, but the clusters are far worse starting at just about the last 2 weeks of August and going into September.

I would wonder if there could be some "pent up fury" sort of effect when a hit would break through after several had been aborted (I've always been episodic).

For me this is definitely true.  Every once in a while I get really successful bust that reduces my pain to light shadows for a week or so...But when this happens I get hit really hard when they finally surface again.

With the advances made in treating this condition in the last few years, a three-hour attack should be almost a thing of the past.

I so wish this were the case.  Hell, yesterday I had a 12 hour cluster that Ketamine made a bit better but not nearly enough.  Eventually mushy's and MDMA busted it, but even that did not happen easily.  (took a whole lotta caffeine, exercise, reefer and ketamine on top of the hallucinogens, but it finally got rid of it.) Imitrex probably would have gotten rid of it but for a whole bunch of reasons I try to take that stuff as little as possible...  3 hour clusters are pretty normal for me.  I do get however, that for most people this is not the case.  Just wanted to throw my experiences out there so the folks that also fall into this category don't feel so alone...

-Ricardo

[spiny]

CT,

Yep, Aug-Sept is the start and Mar-Apr the end of cycle.

Many decades ago, I had multiple low level hits daily and one at night. Then, I went into remission for years. When they returned, I was Episodic with a 6-7 month cycle. They were much different: 2.5 hours in duration, very high pain level, and four per night. Yes, they morphed big time. In addition, the shadows were constant and picking a pen up off the floor would start another hit. > The neck pain started and became unreal too.

Many good aids on this site!!! O2 is the best abortive for me, combined with caffeine. Sleeping in a recliner. Well, I read mostly till 6am. D3 protocol helps. And of course there are the other aids detailed here too.

The people here have been so supportive and helpful it is hard to imagine. A lot to learn, but huge benefit in gaining your life back. 8-)

all the best,

spiny

[trytosurvive]

ClusterT,

New guy here but have had CH for 21 yrs. Went from episodic and very predictable to Chronic 2 years back. The beast is a tricky thing, as I get older it seems to get worse, if that seems possible.

For instance I had a occipital nerve block done on my left side (always left sided) the block lasted 3 days then I got slammed with a double. Yes both sides at once then it started coming on the right side. This has been my pace now, 6 or so months on one side then 6 or so on the other. The beast is very tricky.

[Bejeeber]

I got slammed with a double. Yes both sides at once

All I can think to say about that is WTF??!!, you've just described the worst of the worst case scenarios that I didn't even know was possible (or maybe I've seen this reported before but blocked it out of my mind). 

[trytosurvive]

Hence my screen name!! I am truly an odd ball. If I were Indian my middle name would be black cloud. That has only happened once, thank goodness. I to said WTF, are you kidding me?? It felt like it made a bridge so it could cross over.  Has anyone else ever had this happen? Also for some reason they do seem to grow longer, up to 4 hours sometimes. No way to sugar coat it.