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the beast is back


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Hey everybody,


man its been a long time since I've been on here... 16 months to be exact. my longest remission yet....all due to the mushrooms..


they could not have come back at a worse time in my life. I am getting married in exactly 51 days, a destination wedding where I will be far away from o2, this has always been one of my greatest fears.


I am extremely motivated to rid myself of these as quickly as possible, but I did want to talk to everyone for some advice.


- I have my mushrooms ready.. they might be a year or so old but should still help

- I typically stay well stocked on oxygen, alternating 2 tanks at a time.

- I find the vitamin regimen very helpful, but I have forgotten the suggested doses of fish oil, d3, etc. CH father, you previously gave me a recommendation?

- constant hydration seems to help, whenever I feel overheated it tends to bring them on.

- I have had inconsistent results with exercise in the past, one time it was used as an abortive technique with me and worked great... the other it seems to bring them on pretty heavy.

-  DEEP deep tissue massage. I have a massage therapists that completely rips my body apart in a good way and I have found such positive results from this. often the next day I will not have a CH and it seems to help decrease the severity.


any other advice is recommended. I trust you guys, you once talked me out of a surgery with Dr. Shevel and I feel extremely grateful for all of you.


determined to kick this within 51 days!



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Maybe you've already checked, but I wouldn't assume that oxygen will not be available at the location of your destination wedding (congratulations).  Depends on where that destination is.  Some providers will arrange for tanks at US and non-US locations, or know something you can do to get tanks, so check with your provider.  In some resort-type places, there are businesses rent medical oxygen cylinders (might or might not need a prescription).  I think with some persistence you will be able to find something almost anywhere.


Hopefully, you'll knock out your current cycle long before the happy day.  You don't mention energy shots/energy drinks -- do they work for you?   I guess I wonder whether, if all else is failing (which we are not expecting to happen), you might get some injectable sumatriptan to have on hand.

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I have not heard or tried energy drinks .. do you take them at first sign?

I do have a prescription for sunitriptan injections.. and plenty. I have taken about 10 of them in my life but I was just reading one of the message boards about they could potentially increase the severity of the rebound ? I have just used them

In the past in tough situations like when I am teaching a class or somewhere I need to be functional.

The wedding is in Orlando so I assume it won't be too difficult to get a rental hopefully

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rental in orlando should be simple.  like i say, call your provider.  and this place looks like a possibility: http://www.orlandomedicalrentals.com/medical-equipment-rentals-orlando.asp


yes, energy shot/drink at first sign.  many prefer them very cold (but not everyone).  combination of caffeine and taurine is said to be more effective than coffee, for example.  but some people use a strong cup of coffee.  i'm a fan of the shots because they're easier to get down fast and they actually have more caffeine than a standard 8 oz. drink like redbull.


split your injections if they're 6mg: https://clusterbusters.org/forums/topic/2446-extending-imitrex/    agree with you that rebounds are a possibility, so limit use.  and of course remember that trex will block busting.

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Ive posted our journey in this section, but please ask your Dr to try Seroquel, if only to break the pattern of attacks. Its terrible for sex drive so you will want to stop before your wedding..but it completely broke my Husbands worse year of attacks. Has not had one in months and months. Do you get clusters in hot countries near the Equator? My Husbands gets zero if we are in Mexico or cuba 

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Hi Moto - Ditto the congrats on the wedding.  Much happiness is wished for you and your bride.


This won't help before the wedding but afterwards check out treatment through http://blairchiropractic.com/For-New-Patients


A little bit about why is listed below.  I am starting with a Blair trained doctor this week and have high hopes for this.  From all my research to date be sure you are seeing a Blair technique practitioner who has been trained in the 3-D imaging.


Best regards.





The two bones at the top of the neck make up the Upper Cervical Spine, the Atlas (C1) and the Axis (C2). The most moveable area of the spine and also an area through which much of your nervous system must pass, it is crucial to correct the many subluxations that occur here.
Nerves passing through here supply very large areas of the body as well as your brain, head, and face. Subluxations here can result in headaches, facial palsy, sinus trouble, allergies, fatigue, crossed eyes, and dizziness as well as an alteration to a large variety of body functions.
The Vagus nerves also pass through this area. This pair of very large, important nerves can be seriously affected by upper cervical subluxations, resulting in alteration of the parasympathetic nervous system function.
Vagus nerves control the function of many of the organs in your chest (including the heart, lungs, esophagus, stomach, gallbladder, and small intestines), swallowing, and your vocal cords.
As a result of the location of the Upper Cervical Spine and the many nerves passing through it on their way to support function throughout the body, subluxations in this area are potentially very serious and should be addressed immediately.
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Hi Pebbles, et al,

Thank you for your input.  I'm not sure what specific type of manipulation you refer to above but I am THRILLED to say that it worked for me and seems to be holding. I had my first Blair Upper Cervical correction Thurs, Jan 26th, 2017.  My CH always came on when falling asleep in a horizontal position (bed, couch, whatever).  As a result the only way I could get even minimal relief was to sleep sitting or propped almost vertical on pillows and foam wedges.  That Thursday, the day of my treatment, I came home and laid flat on my back on the bed.  I slept for a little over an hour with NO CH !!!  I have now had 5 full nights sleeping like a normal person with no episodes of CH !  OMG it's a miracle.

While it's true that no single type of treatment (drugs, therapies, etc.) works for everyone, I can't be happier that my suffering has been eased, actually eliminated, at the present time.  I have tried lots of other things as many CH sufferers have and I'm elated to have found something that is working.

I was given the book What Time Tuesday? by James Tomasi which is about his life with Trigeminal Neuralgia (also a "suicide disease").  His life was subsequently changed with Upper Cervical treatments.  You can read his story on the website http://whattimetuesday.com/

My best to everyone here and I pray for your eventual release from pain.

Warmest regards

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