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


trjonas
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I'm new to these boards and have found them so, so helpful! Thank you to all for giving of your time and expertise on these forums!

BACKGROUND: I'm a chronic clusterhead thanks to a concussion in August 7, 2019. Since then I have never been without at least a 3 on the cluster hit scale (shadows?) and those rarely; no remissions even of a day. My high cycles tend to go in sort of bell curve, with the first 3 weeks milder than later, then ramping up very quickly and lasting for about 3 months in the acute phase. My current high cycle started on December 13, 2020, became acute on January 2, 2021, and the peak started January 29, 2021. The last time I had a break where a hit went down from a very high kipper rating (lowest 7) even a notch or two was the evening of January 28. One 180-minute hit ends and the next one begins, with no break or difference in kipper level between. (This current cycle has been without any rescue at all and maybe that's why it seems like it's longer and I'm still in the peak.)

Now, thanks to Spiny, a forum moderator, I have found out about the wonders of welding O2 (couldn't get a prescription from my doctors) and have ordered my supplies. My question is this: you're supposed to start at the onset of a hit for the O2 to be effective. When the hits all run together and are of the same kipper (?) strength, how do you know when the onset is / when to start applying oxygen?

Have any other chronic clusterheads run into this issue? Can anyone give me any sort of insight as to when to start the oxygen? If there's literally no way to detect the onset, do I just try different times of day, e.g. if 12 PM doesn't work, try 2 PM and see if I can hit close to the start of an 180-minute hit? I don't want to waste the oxygen; it's not just that it's expensive, but that I'll run out, possibly without any results, if I'm using it so often, trying to stumble upon a time of onset. 

(Unfortunately I didn't have very precise records of times when I wasn't in peak, because the same thing would happen: one 180-minute 4-kipper, say, would run right into the next one. The only periods I can ever recall as being different / better were in the evening time but alas, not knowing about O2 then, I didn't write down the times.)

Thank you!!

 

P.S. I hope I'm using the terminology right! Please forgive any lingo errors; they're not intentional. E.g. I'm guessing that "kipper" is a severity scale

Edited by trjonas
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21 minutes ago, Jteira said:

Dr. Schindler at Yale is looking for people with post concussive headaches to participate in a clinical trial, FYI

Good to know! I'll check it out! Thank you much, Jteira :)

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...see the attached Kip scale...a beloved fellow clusterheads interpretation. it doesn't fit mine, but bear in mind the typical pain scale you'll get at the doc shop doesn't represent us either. it's importance is as a reference...kind of an "in reference" that clusterheads of an era used (use) to talk to each other in the same language.... 

The Kip Scale (clusterheadaches.com)

 

....there's really no way for us to gauge how O2 is going to work for you....timing/flowrate/breathing techniques/etc....took me hours of sometimes bitter experience to figure what works for me.....then it changes and ya start learning all over again....

....a few basics: get yourself a non rebreather mask (no holes/bag attached, see ClusterO2 Kit - Clusterheadaches.com - Online Store ) so you are getting 100% O2, start out with higher lpm flows (15-25+) and work your way down til ya find the sweet spot, if any. try various breathing techs like hyperventilation (most popular), slow breathing, breath and hold, a combo. most find it important if not critical to start at the first sign of a hit. many, like me, are benefitted by same time quick downing of an energy drink (min 120 mg caffeine/1500 mg taurine).....and staying on O2 for 5-10 mins after a hit aborted. since you are unsure when to start, you are just gonna have to try.... and record/remember your results. in my case, i put a time limit of 20 mins on any attempt because by then i knew it wasn't gonna work....and no sense wasting O2. in reality,  i would probably stop sooner because i just "knew" ...and cannot explain how...you'll know......

Edited by jon019
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I have 15 minutes between hits. So, that gives me a time frame for the O2. 

I suspect that you get a hit that ramps up and back down again? When it ramps down I suspect that you will a short period that is about as pain free as you get and then it goes up again. I would down the energy drink or caffeine then and hit the O2. I start at onset, you would start at minimum to see if that works.

Jon's input is solid, so read and use that info too!!! As you learn to work it, you will learn the methods that work best for you. The objective is to get the CO2 out of your body and pure O2 into it. So, exhale with a crunch at the end when you begin, then inhale your O2. Ditch the CO2 is the objective I suppose you might say.

ATB!

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On 3/16/2021 at 8:46 PM, jon019 said:

...see the attached Kip scale...a beloved fellow clusterheads interpretation. it doesn't fit mine, but bear in mind the typical pain scale you'll get at the doc shop doesn't represent us either. it's importance is as a reference...kind of an "in reference" that clusterheads of an era used (use) to talk to each other in the same language.... 

The Kip Scale (clusterheadaches.com)

 

....there's really no way for us to gauge how O2 is going to work for you....timing/flowrate/breathing techniques/etc....took me hours of sometimes bitter experience to figure what works for me.....then it changes and ya start learning all over again....

....a few basics: get yourself a non rebreather mask (no holes/bag attached, see ClusterO2 Kit - Clusterheadaches.com - Online Store ) so you are getting 100% O2, start out with higher lpm flows (15-25+) and work your way down til ya find the sweet spot, if any. try various breathing techs like hyperventilation (most popular), slow breathing, breath and hold, a combo. most find it important if not critical to start at the first sign of a hit. many, like me, are benefitted by same time quick downing of an energy drink (min 120 mg caffeine/1500 mg taurine).....and staying on O2 for 5-10 mins after a hit aborted. since you are unsure when to start, you are just gonna have to try.... and record/remember your results. in my case, i put a time limit of 20 mins on any attempt because by then i knew it wasn't gonna work....and no sense wasting O2. in reality,  i would probably stop sooner because i just "knew" ...and cannot explain how...you'll know......

Thanks to Spiny, I'm almost ready to go with the O2! I have my 125 cf oxygen tank (full) and the mask you recommended. I'm just waiting for the regulator to arrive, which it's supposed to tomorrow.

I had done some research on these forums on breathing techniques, but your comment is one of the most helpful. Thank you!! I also saw about the caffeine. I had been told to get OFF caffeine to help with the migraines so I don't have much, but I will find something! I do have taurine. And I am DEFINITELY going to record my results each time. 

20 minutes max = SUPER good to know.

most find it important if not critical to start at the first sign of a hit

Therein is my problem. 

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7 hours ago, spiny said:

I have 15 minutes between hits. So, that gives me a time frame for the O2. 

I suspect that you get a hit that ramps up and back down again? When it ramps down I suspect that you will a short period that is about as pain free as you get and then it goes up again. I would down the energy drink or caffeine then and hit the O2. I start at onset, you would start at minimum to see if that works.

Jon's input is solid, so read and use that info too!!! As you learn to work it, you will learn the methods that work best for you. The objective is to get the CO2 out of your body and pure O2 into it. So, exhale with a crunch at the end when you begin, then inhale your O2. Ditch the CO2 is the objective I suppose you might say.

ATB!

> I suspect that you get a hit that ramps up and back down again? When it ramps down I suspect that you will a short period that is about as pain free as you get and then it goes up again. 

Huh. Maybe I'm not normal. When I'm in a high cycle peak it goes something like this for 24 hours: 8 kipper from rising to bedtime, fall asleep with it, wake up with it, next day repeat. No 15 minutes between hits, no 30 seconds between hits, etc. One hit just runs into the next. 

I am SO ready to try the oxygen! I just hope I can get it to work given that I don't know when onset is.

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Bejeeber is correct. A check for HC seems to be in order since you have no pain free time between hits. 

Indo. can be hard on your stomach, but provides great relief. I would suggest getting in touch with you neuro to do a test run with it to see if it helps! 

Fingers crossed for you!!!

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11 hours ago, spiny said:

Bejeeber is correct. A check for HC seems to be in order since you have no pain free time between hits. 

Indo. can be hard on your stomach, but provides great relief. I would suggest getting in touch with you neuro to do a test run with it to see if it helps! 

Fingers crossed for you!!!

Hi Spiny and Jon, I did look at it very carefully before, but the fact that I have definite cycles (high and low) made me think clusters rather than HC. 

Hemicrania continua is a rare, benign headache disorder characterized by a low-level baseline hemicranial headache with superimposed exacerbations of more severe pain. Exacerbations last from minutes to days 

My "exacerbations" last about 3 months, so it didn't seem like this was a match. I'd still be more than game to try indo (I did read about it) but my neurologist is the one who wouldn't prescribe a rescue and wouldn't even prescribe Verapamil instead of Topamax as a preventative, so I'm thinking 0% hope there. 

Still... from what you know:

- Does oxygen work for HC? (I've tried two rounds so far, following all instructions diligently, with zero effect... but again, I have no idea as to time of onset)

- Does busting work for HC?

 

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58 minutes ago, trjonas said:

..... my neurologist is the one who wouldn't prescribe a rescue and wouldn't even prescribe Verapamil instead of Topamax as a preventative, so I'm thinking 0% hope there. 

......now i got no qualms....you need a new neuro....a headache specialist .....anyone with ANY knowledge of CH knows you don't let a clusterhead just ride these out w/o rescue meds (oxygen, triptans, ergots, ketamine even....)....there's a fricken good reason they are called "suicide headaches"...SHEESH, this pisses me off.....

...in cases where diagnosis is undetermined/questionable it is not at all uncommon for an Indo trial to rule out HC.....when/if it works it's like a miracle....(EDIT to add: and another reason for a specialist is to get the right dosage...too little and you think it doesn't work when it may be "THIS" dosage doesn't work...)

Edited by jon019
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29 minutes ago, jon019 said:

......now i got no qualms....you need a new neuro....a headache specialist .....anyone with ANY knowledge of CH knows you don't let a clusterhead just ride these out w/o rescue meds (oxygen, triptans, ergots, ketamine even....)....there's a fricken good reason they are called "suicide headaches"...SHEESH, this pisses me off.....

...in cases where diagnosis is undetermined/questionable it is not at all uncommon for an Indo trial to rule out HC.....when/if it works it's like a miracle....(EDIT to add: and another reason for a specialist is to get the right dosage...too little and you think it doesn't work when it may be "THIS" dosage doesn't work...)

Jon, bless you!! I 100% feel the same way. If I can break this high cycle (of whatever it is) then I can pursue another neurologist. For now I'm too disabled to be able to search out and go see another one and fill out their new patient paperwork etc. - I have slowly trained myself to be able to sit and work at a computer, though it isn't pleasant, but during peak in a high cycle (now, which has lasted since Jan 29) I can't even walk around my own house with my eyes open. I'm no defeatist - usually more like a warrior, but one has to be realistic. I'd be a danger to everyone driving right now. 

That's why I'm hoping busting will work on a cluster OR HC. I did just find someone who had some success with it, though not in this forum. 

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Rest assured many of us, definitely myself included, really feel for you in your near impossible situation @trjonas.  :(

In the spirit of throwing more ideas out there, even if you may have considered them long ago, wondering if your insurance or whatever would allow for a telemedicine appointment with a headache specialist. I don't have a referral, I only spent all of 20 seconds Googling about it, but it seemed some stuff was turning up, like this telemedicine headache specialist

Honestly, I'm not sure how or why I hadn't considered this option for myself yet!

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On 3/16/2021 at 6:10 PM, trjonas said:

My question is this: you're supposed to start at the onset of a hit for the O2 to be effective. When the hits all run together and are of the same kipper (?) strength, how do you know when the onset is / when to start applying oxygen?

The second you get a hint slam an ice-cold 5-Hr Energy Shot [I can just stomach [haha] the grape, and RUN for the O2. If you get it late, just lay there and keep at it. I never had the right technique until I got into The Wim Hof Method.

Stay on the O2 for about 10-minutes after you abort.

Edited by Into Light
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OK, I got myself intrigued went back to that telemedicine site - now I'm seriously considering it for myself. Someone tell me if I've gone cuckoo with this angle. :P

(Busting has been working for me lately, but if I am to follow my own preachings, I should have a neuro lined up and already consulted with, for my backup / contingency planning)

I'm reading testimonials with stuff like "after 18 years being misdiagnosed and medicated incorrectly, Dr. Risa Ravitz diagnosed my condition as chronic Cluster Headaches and prescribed me medicine that changed my life!...."

 

 

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On 3/16/2021 at 7:59 PM, Jteira said:

post concussive headaches

smashing my head at a convention flipped me from episodic to chronic. and my flippin maintenance doses have to be 21 days or a bit less. good thing i'm a mycophiliac.

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6 minutes ago, Into Light said:

The second you get a hint slam an ice-cold 5-Hr Energy Shot [I can just stomach [haha] the grape, and RUN for the O2. If you get it late, just lay there and keep at it. I never had the right technique until I got into The Wim Hof Method.

Stay on the O2 for about 10-minutes after you abort.

BTW, my oxygen costs me the same, self-pay, no matter how many tanks/deliveries I get. So @jon019 is correct if there is an inventory issue.

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15 hours ago, Bejeeber said:

OK, I got myself intrigued went back to that telemedicine site - now I'm seriously considering it for myself. Someone tell me if I've gone cuckoo with this angle. :P

(Busting has been working for me lately, but if I am to follow my own preachings, I should have a neuro lined up and already consulted with, for my backup / contingency planning)

I'm reading testimonials with stuff like "after 18 years being misdiagnosed and medicated incorrectly, Dr. Risa Ravitz diagnosed my condition as chronic Cluster Headaches and prescribed me medicine that changed my life!...."

 

 

Wow! I am seriously going to check this out. THANK YOU and bless you!

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15 hours ago, Bejeeber said:

OK, I got myself intrigued went back to that telemedicine site - now I'm seriously considering it for myself. Someone tell me if I've gone cuckoo with this angle. :P

(Busting has been working for me lately, but if I am to follow my own preachings, I should have a neuro lined up and already consulted with, for my backup / contingency planning)

I'm reading testimonials with stuff like "after 18 years being misdiagnosed and medicated incorrectly, Dr. Risa Ravitz diagnosed my condition as chronic Cluster Headaches and prescribed me medicine that changed my life!...."

 

 

I just booked an appointment for Monday evening at 6:30 PM, the earliest available. :D I'll let you know how it goes!

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Hi Spiny and Bejeeber,

The good news is that the doctor's office responded very promptly! The bad news is this is what they said:

Thanks for getting back to us, and we are now seeing the notes that you included in the appointment booking. Unfortunately, we're not able to see any patients in any capacity that reside in states outside of our licensure; this isn't necessarily simply an insurance issue, it is a liability & malpractice coverage issue. 
 
Unfortunately these type of coverage policies do not cross state-lines (which is a bigger issue regarding the entirety of the Healthcare sector in and of itself). 

We'll go ahead and cancel the appointment for you, but we can certainly add you to our list for outreach purposes if & when we add SC to our states of licensure (we are continually working on adding additional states).
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