Anxious Supporter (Husband) Here - Are my views on CH Skewed?

[Mjedwards409]

Quick background - my wife has CH and was officially diagnosed this time around after being told in 2014 and 2015 that they were migraines because she was a woman.     Her cycle started at the beginning of May after a 4 year hiatus.  Her CH are consistently 1-2 at night, generally 1, and rarely during the day.  Obviously I'm well aware that these things can and do change for anyone that gets CH. That said, I am the "nervous Nelly" of our family, and I often over-research, over-analyze, and over-worry about everything.  (Maybe I should try "busting" my anxiety?   ). That said, I've been making sure I don't let my anxiety and worry over my wife's CH show to her.

Through all of my research, reading of forums, etc. I'm wondering if my view on CH's is consistently the "worst case scenario".  Though my wife's cycle has never produced more than 1-2 HA's in a single day, never gone more than a few weeks, has responded to the D3 regimen in the past, responds to O2, etc., all I can dread is that these things will eventually turn chronic and be resistant to all therapies.  When I really stop to think about it, there are likely thousands of episodic CH sufferers that only get hit once per year, once every few years, get a few CH per day, etc that never even bother to register for a forum or post.  Would you all agree/disagree with that?  Am I always thinking about worst case scenario because I'm actively seeking it out?  (P.S. - I realize my thought process is completely counterproductive, but I'm almost posting this as an outlet for these building thoughts because I am keeping a positive face in front of my wife at all times.  I'm also the type of guy that deals with his fear of flying by researching flight safety statistics every day for 2-3 weeks before a flight, and I know that's not productive either.  )

Side note on treatments:

I've been on CH.com since 2014 and my wife is on day 15 of the D3 regimen including the advanced loading. (Batch has been such a huge help here) We have two M tanks of oxygen with the 15 LPM regulator and Clusterkit mask.  She's currently on a light (30mg - 20mg - 10mg) 13 day prednisone taper while Verapamil is tapered up to 240mg over two weeks.  (Her first time ever taking it). Currently she has been PF for 4 days/nights, but we're aware that's likely due to the pred taper. (But cautiously optimistic because I know 30mg is low so hoping D3 might be contributing as well.) She had an MRI both in 2014 and last week, both came back clear.

Sorry for the rant and I guess whiny first post.  Frankly I'm just an anxious guy that's incredibly worried for his wife.  I will say as an outsider that has seen these attacks in person, and read hundreds of your stories, I pray daily for a cure to this disease and I am in awe of the courage you all display on a daily basis.

[xBoss]

They can change but my episodic cycles were the same for 20 years before they got a little worse. They went from 2-5 week long cycles to 8-11 weeks. Other than that it's about the same.

 

I beat them with mushrooms last year and only went about one week of pain. This year the goal is even less pain!

[CHfather]

4 hours ago, Mjedwards409 said:

being told in 2014 and 2015 that they were migraines because she was a woman.

This is frustrating, and the background to the men/CH - women/migraine diagnostic pattern is undoubtedly rooted in some biases and some defective assumptions acquired during medical training.  It does turn out, also, that women with CH report more "migrainous symptoms" than men, and that's probably part of the reason for the misdiagnosis.  

4 hours ago, Mjedwards409 said:

all I can dread is that these things will eventually turn chronic and be resistant to all therapies.

I don't think your "worst case" dread is unusual or irrational.  Since there's no good explanation for CH patterns, there's also no rational explanation for why they wouldn't slowly or suddenly become worse.  But experience shows that most people don't become chronic, and most people with chronic CH don't find it to be untreatable. Roughly one in eight people (13%) who start out with episodic CH shift to chronic CH. Yes, for some people who have chronic CH, it turns out to be resistant to treatment.  I don't know what percent that is, but I wouldn't put it at more than five percent (probably even lower if we go with your "resistant to all therapies" as opposed to "resistant to conventional therapies" -- busting, ketamine, D3, and other treatments have been beneficial to many people whose CH was resistant to more "conventional" therapies).  So your wife's likelihood of developing chronic CH that is resistant to all therapies is (based on my guess about intractability) something like 13% x 3%, or roughly .4%. Given advances in treatment, I'd say she's considerably more likely to have an essentially painfree life a few years from now than to be living in your worst-case scenario.

3 hours ago, Mjedwards409 said:  >>When I really stop to think about it, there are likely thousands of episodic CH sufferers that only get hit once per year, once every few years, get a few CH per day, etc that never even bother to register for a forum or post.  Would you all agree/disagree with that?<<

There are about 400,000 people in the US alone with CH.  How many participate here, at CH.com, or in Facebook groups?  A few thousand, overall?  Small fraction, in any event.

 

 

Edited May 19, 2019 by CHfather

[MoxieGirl]

Hello MJEdwards,

My heart goes out to your and your wife. 

My first rule of clusters is; no two clusterheads are the same, and just as soon as you figure yours out, it changes. And I don't believe it is a bad thing planning for the worst. Plan for the worst, hope for the best. 

Sounds like you already have the key bases covered, and Batch is a wonderful man, very helpful. And yes, busting is awesome for anxiety as well.  

The nice thing is, you could prepare busting materials, as it can take 2-3 months, then put it in the fridge or freezer and keep it on hand if ever needed. I put mine in capsules, which makes it easy to store and take. 

Mox

[jon019]

Hiya Mj...feels weird to quote myself...but I'd just say (almost) the same thing:

https://clusterbusters.org/forums/topic/4983-episodic-to-chronic-advice/

On 6/5/2017 at 9:58 AM, jon019 said:

My greatest fear over  23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe.

Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable.

Still true 15 yrs later....tho I'd say "manageable" is the proper word. The attitude part was learned the hard way.....and it was for survival. YMMV on how ya get there. I had a life, loved ones, a job, a career...and things to frigging do....and this CH shit was getting in the damn way and threatening to take all of that away. "Not gun happen...read my lips".  I realized it wasn't gonna kill me, why should it disable me?   My belief it starts with the attitude...and living between the hits....a plan comes with research and advises the right tools (one of 'em being right here)………...

Edited May 19, 2019 by jon019

[Mjedwards409]

Thanks so much all for the supportive yet honest words. I have to remind myself to take it one day at a time, for the sake of my wife. God I hope the find a cure for these bastards someday...