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Hello Everyone-Thanks to all for this site (Read 612 times)
Clusters_ATX
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Hello Everyone-Thanks to all for this site
Jul 29th, 2021 at 11:50am
 
Hello Fellow Clusterheads,

My name is Michael, I am a 52 y.o. Clusterhead since June of 2007.  I am excited to read the forum and communicate with a few new friends if that transpires. I am also a Stage 3 B lung cancer survivor with 9 years cancer free. 
With that said and being in a current CH attack cycle of 9 weeks now, I'd do the chemo and radiation again if it would kill these headaches for good.  Yes.  The pain we suffer is unfathomable to most as this condition from what I have researched is pretty rare. 
I believe we're pretty special.  We have more tolerance for pain than the average individual because we have no choice. 

I relocated to Florida (my original home) in August of 2020 during the pandemic.  My main reason: Quality of Life.  And I regret nothing about my decision.
I had been free of attacks for maybe a year until June of 2021 out of nowhere and with no preventative or abortive therapies.  I am in my 9th week of daily CH attacks, mostly in the evening hours or sometimes waking me from my sleep. 

Biggest Mistake I've ever made was returning my Oxygen equipment and not keeping a surplus of abortive therapies (Imitrex Injections) through my move.

What a fiasco.  Getting in to see a neurologist left me for weeks with no relief. 
Oxygen (high flow rate) and Imitrex are the most effective for me.

yes,  I've tried just about everything I'm confident just like many of you probably have.  OTC, Homeopathic, Opioids, street drugs, cannabis,  You name it. 

Most recently before I saw my new neurologist and he is awesome by the way, I went to my PCP and talked.  She was very understanding and we agreed upon a dosepak of methylprednisolone and imitrex tablets.  Well the tablets were 50mg and were not really strong enough and after the dosepak reached it's peak and started to taper off the CH attack just came right back in full force. God Bless her for trying.  I could not find any of my past history to assist in treatment.

I had a carotid artery ultrasound yesterday which resulted pretty good.  Next is a MRI/Brain, CT, and an EEG. 

My neuro's parting words yesterday were:  "we have a long road ahead" but it will get better.

At both my employer's and Neuro's suggestion I have submitted my FMLA paperwork and short term disability.  Wish me luck. 
If nothing else,  the 12 week break should calm my nerves and hopefully end yet another exhausting cycle of CH. 

Would love to hear from you all.   There is a lot to read here so I'll be on here quite a bit. 

Thoughts, prayers, and positive affirmations to all of you. 

Best
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Peter510
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Wexford. Ireland
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Re: Hello Everyone-Thanks to all for this site
Reply #1 - Jul 29th, 2021 at 6:32pm
 
Hello and welcome,

Have you read up on the Vitamin D Regimen? It is doing great things for a lot of us and is certainly worth a bit of reading time.

Best,

Peter.
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You don't stop laughing because you grow old....You grow old because you stop laughing.
 
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Clusters_ATX
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Re: Hello Everyone-Thanks to all for this site
Reply #2 - Aug 5th, 2021 at 7:21pm
 
Hello Peter,
I will read up on that more.  Ironically,  I was on a pretty high dose of Vit D due to a deficiency.  I think the dose was 50,000 iu's once weekly.  Now that I am in Florida I dont seem to have a deficiency but I will recheck my most recent lab work.  I have used B-12 sublingual daily before and that seemed to help.  I was without an attack for about a year and a half.  Thank you for your reply!

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