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Mjedwards409

How powerful is the mind??

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Supporter here for my wife who is going through her 3rd cluster.  A former coworker of mine who has since retired battled CH for nearly 30 years.  He's in his late 60's and has been in remission for nearly 6 years and is now living his retirement dream golfing and fishing in Florida.  He started the D3 regimen back in 2014 before his fall cycle started (amongst other things) and was able to drop all of his CH meds.  He was always episodic with his clusters in September and October. 

I called him two weeks ago to let him know that my wife was back in cycle and to get his advice on a few things, including Verapamil which he used to take.  That night, after 6 years, my buddy had a CH and has had it nightly since.  He has never had a CH outside of Sep-Oct in his life, and after a 6 year remission he starts getting hit the day I called him and brought up CH.  This is amazing to me. (In a negative way)  It makes you wonder just how powerful the mind and subconscious may be when it comes to pain, illness, etc.  Is it more likely this is just a terrible, terrible coincidence?  Luckily the CH's have only been once per night, and according to him haven't gotten over a 5-6 since they started.  To my surprise, he had never tried Oxygen in his life before I brought it up to him, and he was able to obtain an E-Tank from a friend in the medical profession and has been aborting in 5-10 minutes.  (So if nothing else good comes out of this, now he can proactively get Oxygen before his future cycles knowing it will work)

EDIT:  I hope it goes without saying, but this is not to say that I'm suggesting the pain is somehow all in one's mind.  After seeing my wife (who has an extremely high pain threshold) go through these, I have zero doubts that nothing we humans feel can compare to CH.  My only curiosity being thoughts and theories on the mind being able to trigger the beast.

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If there is anything I have learned about CH and people in remission and changing CH is that coincidences are common. Wether it’s a wackey “cure” someone thinks they found only to have their CH return the next year and the same thing not work at all. CH is always changing. It’s a crazy coincidence that he got one the same day. It’s stastically crazy that your wife got them and you knew some one that has them. There are only about 400k people in the US with them. I have a friend that went the welding O2 route and it just so happened the guy that owned the place has a son with CH so he could talk freely about what he was going to use it for. I mean what are the chances. I’ve won the lottery on a lot of medical problems and I thought my chances of winning the lotto are better than getting Chronic CH but here we are....  sorry your wife is suffering. Have you clicked on the blue button on the top of the page to see what this site is all about?  There are other good options to get rid of the beast or prevent it in the future if you know when your cycle starts. 

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Thanks Freud.  Yes I've done a ton of research on all of the options.  (I've read all the stickies and probably gone 4-5 pages back on every section of the forum)  Her first two cycles she never had more than 1-2 CH's per day, and both were less than 5 weeks.  (Her latest cycle was 2015 before this one which she was able to cut to 2 weeks with the D3)  She was only properly diagnosed this time around and she's trying some of the common pharma solutions.  She's certainly open to the alternative therapies if this cycle proves to be longer/more stubborn than the first two.  We were able to get medical O2 prescribed and got a few M-tanks for a surprisingly good deal considering insurance won't cover it. 

She just got off a 2 week pred taper yesterday and she's been on 240mg  of daily Verapamil since the day she started the pred.  Super low I know and they gave her the ER and it wasn't until afterwards I read how immediate release works better.  :-(    She's been PF since the pred started but we both know that means nothing - her first cycle the pain came right back after the prednisone was done so we're under no illusion she's out of the woods.  That said, she's also done the full D3 loading so we're praying that either the HA's will stay gone this time around or be reduced in severity that they can be easily controlled by the O2. 

Long story short we're open to the other methods but she wants to try some of the more traditional methods first. 

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Hi MJ,

Sorry to hear about your wife and your friend. 

I do believe that talking or reading about clusters can trigger clusters. Other people on the forum have said the same. I know when I was getting a lot of clusters, spending time on the forums would trigger them. But, it's all very subjective. 

I've never used O2. Will do if they come back in force. 

Once your wife goes through all the more traditional methods, we'll still be here. Hope she finds something that works for her. 

Mox

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...real interesting topic!....I've seen numerous clusterheads say they don't come to the forums when in remission because of fear of triggering....never heard that it actually happened...for me it made no difference... whether episodic, chronic or shadowy (now)….but I totally understand.....

….twice in my 38 YR CH career I was actually able to think away a hit...it was during a period where no meds were working and I was just so pissed and frustrated that I needed SOMETHING else....the effort was so exhausting and required such determined concentration that it was impractical for the 3-8 hits a day I was having...but I've always wondered...……..

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Thanks all.  On the note about my wife....weird night.  It was her first night off of the prednisone fully.  It was 30mg for 5 days, 20mg for 4 days, and 10mg for 4 days and she was completely PF the entire time so we were hoping the Verapamil and D3 were making a measurable difference since it was a relatively small pred dose.  First night off she woke up at the same time with what I guess was a bad shadow, (not as piercing, probably a 5 pain level), but the shadow was on the opposite side of her head as the other headaches this cycle and lingered well into the morning.  So strange.  She eventually got back to sleep.  Hoping and praying this is the cycle starting to break up, as she's on week 4 and her first (and longest cycle) lasted 5 weeks. 

But, as I'm learning from all of you, the only thing we can predict is unpredictability! 

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