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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › First post - First Group

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First post - First Group (Read 574 times)

CDeBraga

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Orlando, FL
Gender: female

First post - First Group
Jul 14^th, 2021 at 3:33am

As I sit here reading everyone’s post I can’t get over how excited I am to actually being reading what is describing everything I go through.

It has been hard for me to describe or explain since I haven’t suffered as long as many of you. I started suffering in February.

In January I had a TIA (mini-stroke) & found out I had COVID.
The clusters started shortly after. This cluster headache has completely put a STOP to my life. I do not go ANYWHERE except to work (when I make it), my husband is now sleeping in a separate room so he can get some sleep.

I’m ALWAYS in a bad mood cuz I see the looks when I say I don’t sleep, tell people that I have cluster “headaches” & try to describe that headache is an understatement. That is takes everything in me for me not to bash my head into a wall.

I just don't know what to do. I make appointments at the VA but the thought of being there during an episode stops me (there is a lot of history Undecided

) from going every time.

I appreciate all of you allowing me to vent & sharing your stories.

« Last Edit: Jul 14^th, 2021 at 3:34am by CDeBraga »

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AussieBrian

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CH - It's all in your
head!

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Cairns, Qld, Australia
Gender: male

Re: First post - First Group
Reply #1 - Jul 14^th, 2021 at 5:04am

CDeBraga wrote on Jul 14^th, 2021 at 3:33am:

...I appreciate all of you allowing me to vent.

You can vent to your little heart's content, CDeBraga, and no-one here would ever be offended because we know exactly how it feels. You're among friends now who truly know the way dreadful and unexplainable headaches can change lives and relationships.

Feel free to tell us more about it all happened. Your journey so far, what advice you've been given, the 'cures' you've tried.

We'll do everything to help you along the way because we care,

Brian down under.

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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CDeBraga

CH.com Newbie

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I Love CH.com!

Posts: 2
Orlando, FL
Gender: female

Re: First post - First Group
Reply #2 - Jul 15^th, 2021 at 12:33am

Thank you for reaching out. I still can’t understand myself & how excited I am about this group & the reply.

I have suffered through it since day one (Feb. 2021). I reached out to the VA about 3 months ago but have yet to see anyone. Several times I’ve been tempted to do a walk in but I have little faith from past experiences (given me medications I’m allergic to, not listening my concerns for months then needing open heart surgery at 31, being told I have cancer then being told I don’t & when confront response is “oh well” then it’s worse then what they said when they get in). It’s just been one thing after another & being that I’m a vet if I go to an ER they just stabilize me until they can transfer.

I came across this group yesterday & I have started the topirmate & melatonin as I have those medications. I also saw a post about Sonil Nasil Spray. Im trying everything I can until I can hopefully get oxygen tank. I was looking to purchase out of pocket buuuuut that’s not going to work.

I just started suffering in February but it is an EVERY NIGHT OCCURRENCE. I appreciate any tips, advice, articles, & videos. The articles & videos are more to educate myself & keep my occupied during the night.

I DO WANT TO MAKE IT CLEAR THAT THIS IS MY EXPERIENCE AT THE VA. I AM A BIG ADVOCATE IN GETTING VETERANS ENROLLED & THE BENEFITS THEY DESERVE. My mother, father, & plenty others have no issues.

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: First post - First Group Reply #3 - Jul 15^th, 2021 at 8:26am When it comes to Oxygen, that's the first port of call for so many ClusterHeads and on the left side of your screen is a list of buttons including one marked "Oxygen Info". There's also a couple of tricks in getting it much cheaper than medical retail and there are people here to help if you're interested.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

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