Chronic clusterheads... how do you know when a new hit starts?

[Rush]

I know this thread is about a month old, but just wondering how you made out with the O2?

 

[trjonas]

2 hours ago, Rush said:

I know this thread is about a month old, but just wondering how you made out with the O2?

 

Hi @Rush, you're so nice to ask! This is what I just posted on another thread:

 

I also trialed indo at the suggestion of other (wonderful) folks on this forum. It took 2-3 weeks of titrating up to 225 mg but I did have a partial response of about 50% improvement, which, since I've been at a 10 since late January, felt WONDERFUL. 

I assume that because I only partially responded, I must also have an underlying condition of CCH or chronic migraine, but now you make me wonder, @Siegfried! Thank you for posting about that. It's possible that the longer I stay on the indo, the more I'll respond. 

Also, I'm now busting to try to get out of this 10 cycle or exacerbation or whatever it is, so that could be playing a big part. I think it is because I just had my third dose and I'm seeing cumulative effects paired with the indo.

I've had zero response to oxygen. But because my HC or CCH is constant, I have no idea when the onset of a hit is, and other clusterheads say oxygen is only effective if taken at the beginning of a hit. As far as I can tell, the beginning of my current hit was on January 29, 2021, and if so, it's waaaaay too late for oxygen. (Today is April 21, 2021)

However, I've also had almost no side effects from the indo. As @MoxieGirlsays, I always take it with a lot of food, especially high-fat food (studies say this helps amp up the response to indo) and from the beginning I took a whole bunch of herbal gastroprotectorants: ginger, marshmallow root, great plaintain, arteminsin with it. I just added 20 mg Prilosec with each dose at the advice of my neurologists' PA (physician assistant). 

For anyone with HC who can't tolerate the indo, try Gliacin. I know a LOT of people on a HC Facebook support forum who use that successfully instead of indo because they too had terrible side effects from the indo. Gliacin is a formulation of the herb boswellia and was developed by a doctor with HC. It takes longer to respond to it (up to a month) but it comes without most of the side effects of indo. Check out the research on his website: https://www.gliacin.com/. @kat_92@Zoejarvis

[Rush]

Wow, no help from O2... There are not many people with CH that don't at least get "some" relief from it.. I had to look up the HC (whether it is CH HC I, like everyone else, will grasp all straws :\...) I have been in cycle since 12-9-20, so I wanted to look into the HC just to make sure. Beginning to think I am going chronic arghh..

It does sound like you made some head way though.

GOOD LUCK!!

[trjonas]

@RushI know! But that long after onset, I think the oxygen doesn't have a chance. Either that or I have (a) pure HC or (b) HC and chronic migraine instead of HC and CCH.

Have you trialed indomethacin yet? 

[Rush]

No I Haven't... (on the indomethacin ). But with a CH it is "better" to start at onset, but there have been times (like now) that my CH's are not as intense and sometimes very short, so if it is like a KIP 4, I will try to ride it out, but if it hit's 45 minutes or so, I will throw in the towel, because then I know it might be one of those 3 hour jobs.

But I can get on the O2  with a KIP 9, and it will stop it, it's just not as quick if I don't start at first sign. But I am speaking for myself here :).. I imagine it may vary by person.

I may be wrong, but it was my impression that Chronic Cluster sufferers even got breaks between CH's, just not real breaks in the cycle... And BOY will I be told if I am off base :).... And if that "is" the case (not sure again), then I would be thinking more on the HC like you said.

 

[Bejeeber]

As a fairly textbook episodic CH'er I can say that once an attack has gotten a real foothold I've never been able to knock one back with O2

It's more of a catch it at onset or forget about it deal, so I feel like I understand where you're coming from @trjonas with not being able to tell if O2 would be of any use, since your onset was months ago! 

[trjonas]

7 minutes ago, Bejeeber said:

As a fairly textbook episodic CH'er I can say that once an attack has gotten a real foothold I've never been able to knock one back with O2

It's more of a catch it at onset or forget about it deal, so I feel like I understand where you're coming from @trjonas with not being able to tell if O2 would be of any use, since your onset was months ago! 

Thank you @Bejeeber! I love your understanding! 

@RushI think you're right about chronic clusters still having at least short breaks between them, at least what I've read on this forum. 

[Rush]

It is no wonder these things are so hard to figure out, they vary with time and people.. this is only the third time I have had access to O2, but have yet to get one I could not stop with enough O2. But most of my 40 years with CH's has been ice packs and dancing.