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Did the CH choose me, or did I choose the CH? (Read 808 times)
The Thinker
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Did the CH choose me, or did I choose the CH?
Jan 19th, 2021 at 9:51pm
 
This is quite an offensive question, I can feel many of you, right now, having a physiological reaction to the subject, one of disgust and vehement opposition - I'd just like you to bear with me and listen to my story before offering a violent rebuttal full of citations, study references and so on.

I was diagnosed ECH in November of 2015. I had suffered cluster headache, bi-annually, November through March since 2013, from the age of 30. I am now 38 years of age and have so dealt with cluster headache little over 8 years.

In 2015, I was none the wiser as to treatments, and I continued a path of inadequate therapies and really suffered through those years, as many of you will be able to relate.

In early 2016 a fellow sufferer from this group recommended the D3 regimen and I looked into it. I had actually parked it previously - I was no longer in cycle / it was too hard / complicated and I was doubtful a bunch of vitamins could help such an excruciating and mean & miserable condition.

In 2017, November - like clockwork, the bi-annual CH returned. I recall the first attack of that cycle like it were blown up in A3 colour on a large projector screen. I started the D3 regimen; largely unsupported by my wife, Doctor but on the earlier advice of the person in this forum.

10 days later, starting the 50,000 12 day D3 loading dose alongside the co-factors, the attacks resided and I have continued to use D3 and tell others about it every single chance that I get - I have no doubt as to its efficacy.

I hence dealt with my 2017 + 2019 cycles with the utmost confidence and success, I had finally found something that really worked - I was amazed! As far as I was concerned, I'd start the regimen a month before and stay on it a month after my established cycle seasons.

2020 was a year full of challenges, the biggest challenge for me was developing another condition of which medical science knows very little to nothing about; I want to tell you a little bit about it.

In March of 2020 I went for an audiologist appointment to get my hearing checked, I was starting a new job as an auctioneer and I found that I always had the well recognized argument with my wife about the television volume - I always needed it up higher than she could tolerate in order to hear what was happening.

My initial visit showed that I had significant hearing impairment and I was recommended a follow up more indepth appointment a week or so later.

Upon returning to the audiologist for the follow up appointment, things really did not go as planned. I recall feeling rather anxious about the appointment, and as I sat in the audiologists chair, she calmly explained the tests she would perform.

It was at the point that she lifted a pair of airphones to place around my ears, well - that was the thing that I recall.

I remember waking up, what I am told now as around 40 seconds later, staring at a strange woman in a strange environment - I had fainted for the first time in my life.

As I was out for some time, an ambulance was called and, long story short, I gave everyone that I love a real hell of a shock - otherwise I tested out fine, I had fainted from being anxious about the visit.

A week or so later, it is a Thursday and I am at home with my wife, I am feeling this weird sensation of not being able to take a full, satisfying breath. I mention this to my wife, and consider it will pass.

Friday comes around and I said to my wife - I'm really not well, I still am unable to get a full satisfying breath, I am not going anywhere today.

What ensued was several months at home, spiralling into a state of severe depression as a result of a simple sensation of not being able to get a satisfying breath, needing to yawn excessively, in between burping to try and alleviate the sensation.

During the course of this, I went to numerous Doctors, Specialists - they all told me it was anxiety / stress; I did not want to believe this. I mean, I am a smart guy and I understand how breathing works - I am not STRESSED!

I live a great life - fellas, you should see my wife, I shot well above my weight in that department - I have nice things, I love my 2 dogs to bits; everything seemed in order from my perspective so when all these folks, including my wife, are telling me I have some stress and anxiety disorder that is manifesting in the feeling of not being able to get a full breath, I am in disbelief.

In fact, I became convinced towards the end of 2020 that I was dealing with a severe case of esophagitis, inflammation of the esophagus as a result of silent acid reflux.

As it turns out, the condition is called pseudo dsypnea, and it is either caused by silent acid reflux, panic attacks or anxiety disorder.

Moreover, in ruling out silent acid reflux, I was forced to face the demon of anxiety - was it really me - was I the face of anxiety? Perhaps I was - I was ready to try anything.

November rolls around - a non cluster year so at least that is a bonus. Then... out of left-field, my clusters start up even though I am an odd year kinda guy - 2020 really wanted to screw me.

I got on a prednisone 10 day course stat; and started loading D3 at 50,000iu. Sure enough, after day 10 and coming of the prednisone, the attacks didnt return and I have maintained the maintenance dose ever since.

Throughout Christmas I was solemn and unhappy - I really wasnt finding joy in the simple things, I read books and generally closed down my social butterfly within; which was for the most part relatively quiet anyway, so this had a huge impact on my loved ones.

On returning from holiday I followed some dicussion on the Cluster Headache Facebook group discussing the connection between trauma, in particular child-hood trauma, and cluster headache, is there a connection. I was one of the first folks to comment, BULLSHIT.

Someone on that thread suggested to read a book called The Body Keeps the Score; it suggests childhood trauma manifests through compromising the immune system over a period of time through a dysfunctional equilibrium causing one to stay in a subdued fight or flight response long term, this continual activation of the fight of flight response resulting in numerous manifestations of disease.

This was an eye opening book, it was read through many tears and outbursts; and was probably the first step in recognizing some really interesting facts about my own childhood; memories that I now associate with trauma and this is the purpose of my post - I wanted to share these insights I've had.

1. As a young boy, I grew up without a biological father, he passed away before I was born. My mother never re-married and I never had a significant father figure in my life. I have now remembered, in some pretty clear and emotional detail, that as a young boy, when I became frustrated or angry, I would take myself outside, and on all fours I would bang & throttle my head against the ground as hard as I could until my mother or sisters would intervene. I asked my sister about this recently and she clearly remembered me doing this, it was a topic of clear intrigue once I had triggered her memory, she recalled feeling very worried for me.

2. I've always had really negative feelings towards alcohol - I hate the stuff. I had been told as a boy that my father liked his drink too much, and that in fact his death was from a disease related to alcoholism, and that alcoholism ran in his side of the family.

I'm smart enough to realize that the connection I am about to propose is a connection a step to far to make right now, science just isn't able to confirm what my intuition / gut is trying to tell me.

I get that something, an known mechanism, excites the trigeminal ganglia and cascades the expression of neuropeptides resulting in neurogenic inflammation - I get this part but I just want to say to all of you, that isn't it uncanny.

As a young boy, in repressed memories associated with deep unresolved trauma from growing up with a dead father, I used to bang my head so violently hard against the ground as a coping mechanism and that years later I then develop a disease resulting in the same throbbing pain I used to inflict upon myself?

And isn't it also interesting that my father died from what I consider alcoholism and that years later, in my thirties, I develop a condition which means that I will never, ever want to touch a drop of alcohol - and now I have a very valid reason for it, a disease called cluster headache?

Are these complex mechanisms the overall result of the erosion of my immune health through the unwitting passage of time alongside the holding of secrets & emotional baggage; a repression & honest untelling to the world of the trauma & neglect for which I now associate as related to growing up fatherless?

Whats even more interesting; and this is an edit to add - is that ever since I read the book, cried, had light bulb moments and recognized a lot of the trauma that I hold onto so deeply & innately; the breathing sensation / Sigh Syndrome, has completely resolved itself. What was a plague on my 2020 is but a distant memory that seems to have resolved itself spontaneously in the week following completion of the book and some deep introspection in allowing some of these "home truths" to surface.

If you havent read The Body Keeps the Score, its a book I would thoroughly recommend you purchase, easily the most influential book of my adult life.

The pondering of such issues honestly makes me want to continue my journey towards health, on all fronts and aspects and learn more about this very fascinating aspect of cluster headache.

I offer my love to you all, and if you have come this far - well, I am sincerely interested in your views and thoughts, we are a community afterall.
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« Last Edit: Jan 19th, 2021 at 10:32pm by The Thinker »  
 
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AussieBrian
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CH - It's all in your
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Re: Did the CH choose me, or did I choose the CH?
Reply #1 - Jan 19th, 2021 at 10:54pm
 
I'm guessing that just writing all that down and pressing  'send'  has left you feeling a better person.  This is a good thing.

Did CH choose us or did we choose CH? 

Wow!  That's an absolute corker of a question and goes only to prove what a  [insert expletive of choice]  monster we must deal with every day.

Many ClusterHeads mention having cycles brought on by sudden or massive trauma.  I'm the other way round and had two major cycles broken on the spot when once I was busy being shot at then some years later when my dear father passed away suddenly.

Both were excellent cures,  but I can't recommend either.

On the bright side,  it's great you've got some sort of control over this mayhem with your D3 regimen and access to other abortives/preventives you've come to know and trust.

I also ask you hug your wife and let her know we love her dearly.  Our supporters do it much, much harder we do.

There's an old saying,  "I may be lying in the gutter but I'm looking at the stars"  and that's exactly how we must approach this.

Keep looking at the stars.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Racer1_NC
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Re: Did the CH choose me, or did I choose the CH?
Reply #2 - Jan 20th, 2021 at 4:02pm
 
AussieBrian wrote on Jan 19th, 2021 at 10:54pm:
There's an old saying,  "I may be lying in the gutter but I'm looking at the stars"  and that's exactly how we must approach this.

Keep looking at the stars.

This.....
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“We see what we believe, not the other way around." — Varga
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BarbaraD
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Re: Did the CH choose me, or did I choose the CH?
Reply #3 - Jan 26th, 2021 at 6:57pm
 
Glad to hear you got better. It makes sense and I'll have to read that book. I get that breathing thing periodically It's not fun.

And so glad the D3 is working so great. I've been on it for about 6 years and have NOT had a hit (only shadows occasionally) since going on it. Since I was/am chronic, I don't miss a dose EVER.
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What don't kill ya, Makes ya stronger!
 
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