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Help coping.


Jimmy J
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Hi All, going through a rough time. The last cycle I had was 4 years ago and I had very little knowledge of what was happening to me. Extremely painful attacks every few days then one day they stopped so I figured that was it and went on with my life. Ignorance is bliss right?

This cycle started about a month ago and is hitting me at least 2-4 times a night (sometimes during the day) for about 30 minutes a pop. As you all know it is hell. I have no abortive treatments available. My main coping mechanism has been pacing and moaning. It gets really loud at times and I’m surprised that the neighbors haven’t called 911. I have tried ice on my head but sometimes that seems to make it worse. Last few nights I have used ice in my mouth and held it against the roof which helps a bit. 

I’ve been on a D3 regimen but only a few days in.

I have a Dr’s appointment tomorrow morning and I am hoping to get prescribed o2.

Any suggestions on coping with these attacks till I get on o2? Any suggestions on what drugs my Dr. May want to prescribe that will do nothing or have bad side effects Tha I want to stay away from?

Any advise is greatly appreciated. So glad I found this group!

Jimmy
 

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Hi Jimmy,

Sorry you're having a rough time. I sure hope your doc gives you O2 as it's a mainstay for us CH folks. I have heard something positive and negative about nearly all medications that are typically scripted for CH. I am on verapamil (ER) I don't get any side effects unless I go up past 480mg a day. Many say that the rapid release form of verapamil is more helpful but I haven't tried it myself. Caffeine seems to help many and I've even aborted an attack once with a strong cup of coffee. Are you on the most recent version of the D3 reg? A few new items have been added and it's important to take ALL the co-factors or it won't work. There are other options (not as conventional) that can help you. Check out the little blue ribbon at the top of the forum (new users please read here first). Hope you feel better soon!

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Hi @Jimmy J, that's messed up that this reappearance of the CH is going on right now. :blink: All too often it is only headache specialist type neurologists who know enough about CH to prescribe O2, but if your appointment isn't with one of those, you never know, you could still end up marching out of the visit in full possession of the desired O2 prescription.

CH'ers in the US having difficulty getting such a prescription have long had success just getting their O2 form a welding rentals outfit (no prescription needed, and it's purported to be the same stuff as medical O2), so you could always start looking into that, and a non-rebreather 02 mask, as a backup in case the doc visit doesn't go swimmingly.

Hey since ice in the mouth helps a lil' you might be a candidate for the breathing of freezing air that has been known to abort attacks for some of us some of the time. Bad time of year for getting any of that freezing air au natural, in the northern hemisphere anyway, but if you have a car: At first inkling of attack, run, don't walk out there with ice already in mouth, get the motor running, crank the AC full blast, stick your shnoz right up to a main vent, and breathe deeply 10 min or so until attack well dissipated. A goal can be to replace the CH with a delightfully mild in comparison 'ice cream' headache, and yes, if successful, neighbors may think you've gone mad if they hear you gleefully running up and down the street at 3:30 AM waving your arms over your head and hollering "I now ONLY have an ice cream headache!, I now ONLY have an ice cream headache!", but please do us all a favor and try to remember to have at least put on some pajama bottoms if doing so. A window type air conditioner in the living space is another potential source for the the McFreezy air.

 

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OH YES, just read @BoscoPiko's post, and absolutely caffeine, often in the form of an energy drink (like Red Bull), or energy shot (like 5 Hour Energy), tends to be the first go to for aborting attacks in the absence of O2 - or even right alongside O2, or freezing air, etc.

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All the meds of course can have bad side effects, but if you decide to try to make it through this cycle with meds, while preparing to prevent the next cycle altogether with D3/busting, the typical, and often effective strategy is a prednisone burst/taper to temporarily knock the attacks out, while waiting for the verapamil @BoscoPiko mentioned to take effect, and in emergency if without O2, triptan injections or nasal spray (NOT PILL FORM) for aborts.

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2 hours ago, Jimmy J said:

It gets really loud at times and I’m surprised that the neighbors haven’t called 911.

...can relate...i carried a pillow to scream into, took my shoes off and stayed on the carpet....

....might wanna try a HOT shower on hit spot...cold always made it worse for me, tho breathing cold air just feels damn good. some sit in a hot bath or use hot foot bath...others alternate hot/cold. ya gotta fool that wonky hypothalamus...

...i second the energy drink, powered down fast...need at least 120 mg caffeine and 1000 mg taurine...

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You could try running. I have aborted attacks this way.

You have to start running as soon as you feel it coming on. Then you'll need to run to a point where you're essentially maxed out and you're having to take really heavy breaths.

If you don't run long enough, the attack can pick right back up so be careful.

I've also heard of people doing push-ups to abort. Same principal, get your HR up and take in as much O2 as you can.

Good luck

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Endorsing  @jon019's sit in the hot bath, and @dmlonghorn 's exercise. Have personally tried the exercise, and found it to be about as effective as the freezing air. Neither worked for me in high cycle, but both did during my less intense ramp up first week or two. I only first attempted these after years of built up CH hardening though, so for someone 'only' on their second cycle, they may be more effective.....?

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In this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there is a section toward the end (headed "Treatments" without O2...) about things you can do when you don't have O2 or other meds.  Most are variations on things that have already been listed in this thread, but maybe worth a read.  In addition to what's there, many people find that sleeping more upright (e.g., in a recliner, or at a table with you head on pillows) can reduce the frequency or severity of nighttime attacks.  (If you look through the reply posts in that thread, you'll see a couple of other things that might be worth trying.)

Since you are new to actually dealing with CH, you might want to look through that whole document.  It also contains some tips about how to make it more likely that you get an O2 prescription.

Keep us informed . . . . 

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Posted (edited)

Hey, Sorry you are hurting. Try a super hot soak or shower but I like the soaks. They can abort the attack just like oxygen can and quickly. It does not work for everybody but it works for me! GL Warrior.

 

 

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Edited by xBoss
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Hey, sorry about the cluster, as we all know they suck.  As one of the unlucky ones that O2 doesn't work for there is 1 go to when i can no longer just pace/cuss through them.  I rarely use it because..... well you'll see but it does stop an attack for me.  

 

I slather my face with capsaicin cream and take a hot shower.  Just make sure to keep the cream out of your eyes and get ready for the sensation of dipping your face in lava.

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On 6/5/2022 at 1:15 PM, CHfather said:

In this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there is a section toward the end (headed "Treatments" without O2...) about things you can do when you don't have O2 or other meds.  Most are variations on things that have already been listed in this thread, but maybe worth a read.  In addition to what's there, many people find that sleeping more upright (e.g., in a recliner, or at a table with you head on pillows) can reduce the frequency or severity of nighttime attacks.  (If you look through the reply posts in that thread, you'll see a couple of other things that might be worth trying.)

Since you are new to actually dealing with CH, you might want to look through that whole document.  It also contains some tips about how to make it more likely that you get an O2 prescription.

Keep us informed . . . . 

Thank you. 

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