Intensity

[Tamari]

Hello Friends!

I am new to this forum and  a typical ECH.  Started about 9 years ago and on my 4th cycle.  Every cycle usually last about 6 weeks. Reading the posts here I consider myself lucky.  I finally  found a doctor that was willing to give my oxygen and it is a game changer. Before I took Sumatriptan but it stopped working for me. I get my attacks mostly  between midnight and 9am.  I  feel as if I wait too much with oxygen it is hard to abort the attack and at the same time I am afraid of just taking the oxygen before pain is really hard as lately the inensity of it is not horrific as it used to be.  In addition I have like an echo of the pain in my head constantly  it's like  parking there until it is ready to attack.  Does anyone know what cause the intensity of the attack?  

Thank you!

 

[Maryo52]

First of all, the "pain in my head constantly" may be what we refer to as a "shadow." Clusters are referred to as the Beast. Makes sense, huh?

As to your other point, I have to remind myself at bedtime that if I wake up and wonder am I having a cluster attack, I am, and I should get right on the oxygen. The abort is easier. There are some documents on this website under patient resources about how to make the most of your oxygen experience (doesn't that sound romantic!).

Also, Four cycles in nine years is, as you point out, lucky. I used to be episodic, one episode a year for 6-12 weeks with headaches only every other night (sleep and alcohol are my triggers). Slowly over 41 years my cluster disease has progressed, and now I'm chronic with 3+ attacks every night year round.

Lots of resources here, glad you found us. We are, I think for the most part, people for whom the medical world has not really made a place (although thanks to Clusterbusters and others that's getting better), and we are each our own guinea pig, experimenting to find remedies and prevention that work.

All the best!

[jon019]

Hi Tamari...welcome...

...your best bet is to hit the oxygen at the first sign of a hit. i understand a desire to conserve O2...but in the end it aint worth it!

...some have found an energy drink/caffeine immediately before the O2 makes it more effective...for me sometimes it was all i needed..

....staying on the oxygen for 5+ mins after a hit abort may help with the shadows. others find that ginger, caffeine, or regular pain relievers like aleve help with shadows (i'm sure you know  these meds no help with an regular hit)....for me, nothing ever worked on shadows, i had to learn to just deal with it

....you should experiment with various types of O2 breathing, hyperventilation/slow breathe/breathe and hold...or a combo... all work for different folks. there is no right way....

best

jonathan

Edited November 6, 2021 by jon019

[Bejeeber]

@Maryo52 and @jon019 just dispensed such beautifully accurate, helpful and to the point info packets re: shadows, O2, etc., all I can do is look upon with awe and applaud!  

[BoscoPiko]

Hi Tamari,

I am also episodic and truley understand the feeling of constant lurking shadows. I have had them since my first attack. At the advise of some pretty awsome people on here I started using ginger, first tried ginger tea but didn't like the taste so I started taking 1,000 mg organic ginger capsules and I have had several clear/no shadow days. Maybe give it a go. Hope you feel better soon.

[Freud]

For the hits that ramp up quickly and don’t respond quickly I have noticed as others have pointed out that technique plays a huge role. If you’re just getting hit and ramping up rapid shallow breathing is fine. But when the beast is raging it’s important to take big deep breaths and hold them for 5-10sec. Forceful exhale all the way, big deep breath, hold....repeat.  That works for me most of the time for the stubborn hits. 

[jon019]

On 11/6/2021 at 7:23 PM, Freud said:

For the hits that ramp up quickly and don’t respond quickly I have noticed as others have pointed out that technique plays a huge role. If you’re just getting hit and ramping up rapid shallow breathing is fine. But when the beast is raging it’s important to take big deep breaths and hold them for 5-10sec. Forceful exhale all the way, big deep breath, hold....repeat.  That works for me most of the time for the stubborn hits. 

.....^^^^^^^^^this is very good advice....i wish it wasn't so but i've lost count of how many times i've seen that hyperventilation is THE way to use O2. it MAY be the best (probably but not universally)... but it sure as hell aint the ONLY. i personally can't hyperventilate, but thru hard earned experience found that very slow deep in/out was extremely effective. may not get the max O2 in circulation in the minimal time, but it worked...it DID calm me the f down, and eliminated the adrenaline, overheating, agitation, anger, spastic movement, stress hormone reaction that are the hallmarks of a killer hit. mixed in, or after, i progressed to a very similar technique as described by Freud. my fear is the seemingly never ending reports from newer clusterheads that "oxygen doesn't work for me". well....maybe....and maybe it's just a particular technique that doesn't..... and you.need.to.keep.trying the various methods.

....there...rant over (afterall, aint that part of what CB is for?)...this ones a pet peeve...oxygen made all the difference in giving me a life....

Edited November 10, 2021 by jon019

[Shaun brearley]

Hi Tamari 

1100 ginger capsules 2 a day should do the trick to keep the shadows away . Just keep taking them during your cycle . I'm ECH and know don't suffer from the lingering shadow since taking them.  Can get them on Amazon only £9.99 for 90 capsules 

 

 

[Cast Iron]

On 11/6/2021 at 11:41 PM, Tamari said:

Does anyone know what cause the intensity of the attack?

There is no science behind the intensity of attacks, yet, although I am sure the medical world in the future will also crack this puzzle…the other puzzle is: why does the airflow through the nose aborts an attack in an early stage. They just don't know. With me the intensity is related to the cycle I am in, high or low cycle, and the kind of trigger that sets off an attack. I can have a short 3 to 4 months high cycle of 4-6 daily major attacks with KIP 7-10 (KIP is the pain scale or intensity level), or a low cycle of a year with 2-4 moderate intensity attacks a day (KIP 3-6). Also the trigger has an influence, an afternoon nap results in a higher intensity attack. You’ll find that everyone here will have their own personal experience and many will confirm that the attacks can morph over the years, in cycles and intensity. Disregard the pain levels, cycles, morphing.. the advises of the guys are absolutely valuable: get your fighting meds together and experiment with the different breathing techniques what works best/fastest to abort an attack

[Freud]

I have a cluster friend who has constant shadows. For her oxygen can abort them most of the time as well.  Have you tried that?

[regarain28]

Can someone point me to a video of voluntary Hyperventilation?  I am looking to give this a shot, but I am not convinced I am doing it correctly?

[CHfather]

There is a brief discussion/illustration of hyperventilation beginning at about 7:20 in this video (which is at this CB site): https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/

Batch (now xxx) describes and discusses a hyperventilation process here (no video) -- https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ -- but he is doing it differently.  He has 30 seconds of hyperventilation with room air -- ten fast, intense inhale/exhale cycles of about 3 seconds each -- followed by a deep inhalation of O2 that is held for 30 seconds and then forcibly exhaled with a strong "crunch," then followed by another 30 seconds of hyperventilating with room air, then another inhalation of O2, etc.  You should read what he says about all that. It begins following the instructions and photos related to the "redneck bag."  I found it a little more jumbled than Batch's usual descriptions, but the info is all there.

 

[Sue mcdonald]

I also do the weird deep breaths during cha's. Indeed it changes body chemistry, rly changes acidity/alkinine pH values. It might simply be changing that blood pH changes the oxygen going to ur brain similarly as deep sea diving wld, or diving W and N and going to a higher altitude.i dont try to breathe that way, but i do.