Longest CH cycles?

[cgold_pgh]

Hi all,

 

Let me preface this with I've suffered from CH's since I was about 12 years old. As a female, I was brushed off and misdiagnosed for years. I'm 28 now, and for the longest time couldn't find a single other person who a) suffered from CHs firsthand, or b) even knew what they were, so finding this forum has been a godsend. I've found more useful information on this site than from all of the neurologists I've seen, and knowing I'm not alone is incredibly helpful.

My question for the group is this: in the past, my cycles have fortunately been relatively short. As I've gotten older, I've found the duration and the pain has gotten increasingly worse, but fortunately, nerve blocks have historically cut my cycles altogether. One nerve block and I'm largely back in remission.

My last remission lasted two years, but 7 weeks ago they came back. They're lasting longer than ever before (1.5-2hrs), the pain is significantly worse, and this time, the nerve block did nothing. I'm wondering a few things...1. What's the longest your episodic cluster cycles have lasted?, 2. How do you know if/when episodic has evolved into chronic?, 3. Is there anything I can do to stop this cycle apart from steroids? I was on them recently for ~ a month and am still recovering from the side effects.

Thanks all!

 

 

[FunTimes]

Welcome tot the club, glad you found us and we are all here to help as you can see. 

The first think I would say is get your hands on Oxygen, you can and may have read all about it on this site. Vitamin D3 is another thing you can get started today with one trip to a local vitamin shop, walmart or rite aid type store. 5hr type energy drinks can slow the onset of an attack, putting your feet in a hot water bath, ice pack on the cluster side are all tricks people use to help slow or stop the pain. 

Read up on the site for an hour and you will have a ton of information that may be helpful to you. As a tun of questions and someone will be sure to answer  

[Bejeeber]

Hi cgold! I'm afraid your story of being brushed off and misdiagnosed as a female is one I've noticed others reporting all too often. Sometimes makes me wonder if CH really is more prevalent in males, or if doctors are still just stubbornly continuing to refuse to diagnose females based on a myth. 

Last I checked, 7 weeks is nowhere near what is considered the chronic zone, you'd have to go on continuously for many many months (I think it is n the neighborhood of over 6 months, maybe someone can come on here and remind me), to be edging towards a chronic classification.

Personally as an episodic I can say that yes over the decades the cycles and duration of attacks have steadily gotten longer and the pain has intensified. What first started as 2 weeks of attacks maybe once a day, a half hour each, very gradually devolved into 2.5 month long cycles, several attacks a day, and if an unaborted one breaks through it can go on 3-4 hours. BUT I still count myself lucky, as the remissions have also accordingly stretched out longer and longer. Many blame things like imitrex use for worsening their cycles. I don't particularly doubt them, but my CH went ahead and started continually worsening before imitrex was even available in the US.

I like all the stuff FunTimes has mentioned, plus you'll find lots of talk about "busting" over on the Share Your Busting Stories forum where busting is discussed by registered members. It's not really discussed here on the General Board, but this is a quick indicator of what it is about, pasted from the Treatment Options and Choices for Cluster Headache Patients public section of this Clusterbusters site:

Fast Statistics on Cluster Headache and Indoleamine Hallucinogens

• A 2006 study conducted at Harvard Medical School found remarkable results in CH patients and LSD or psilocybin mushrooms:
  • Psilocybin reports:
    • 22 of 26 patients said psilocybin aborted their attacks.
    • 25 of 48 patients said cluster cycle was terminated.
    • 18 of 19 patients said psilocybin extended their remission periods.
  • LSD reports:
    • 7 of 8 patients reported LSD terminated cluster cycle.
    • 4 of 5 patients said LSD extended remission periods.
• A 2017 qualitative thematic analysis of user accounts in forum discussions found:
  • CH patients consider illegal psychoactive substances as a last resort.
  • There is little to no interest in the psychoactive impact of these compounds.
  • Patients choose sub-psychoactive doses to avoid or limit the “trip” effect.
• Patients reported prophylactic and acute treatment for cluster headache using psychedelic tryptamines: LSD and psilocybin mushrooms.

[MaxHead]

Welcome cgold. Sorry you need to be here but glad you found this place. Amazing community of people who have a lot of knowledge to share. 

Regarding the chronic question, it can only be determined by a look-back diagnosis. In 2020, the International Classification of Headache Disorders {ICHD} changed the definition of chronic to: "Cluster headache attacks occurring for one year or longer without remission, or with remission periods lasting less than 3 months.")

So technically, you have to kind make it roughly through a year under those conditions to be considered chronic. 

One thing to keep in mind, a small number of people do go between episodic and chronic and back again. I began as episodic and have been chronic since May 2018. But there are people who go back and forth. 

As you'll hear over and over, everyone is different. So don't be too surprised at anything. 

 

[CHfather]

You might already have seen this as you've been reading.  It gives you a sense of the treatment landscape, including basics of busting at the very end:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

As others have mentioned, oxygen would typically be your best option, but with relatively short and infrequent cycles maybe that's more of a future consideration unless you can get it quickly.  Triptans, either injectable (Imitrex) or perhaps as nasal sprays, might be right for you this time.  The D3 regimen is a good preventive, but probably won't help you right away.  Busting works for a lot of people.  Strategies like energy shots/drinks can help you now.

11 hours ago, Bejeeber said:

Many blame things like imitrex use for worsening their cycles. I don't particularly doubt them, but my CH went ahead and started continually worsening before imitrex was even available in the US.

Same was true for my daughter, who used no pharma of any kind for the first ten years she had CH.