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Cluster Headache Help and Support >> Getting to Know Ya >> First post - First Group
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Message started by CDeBraga on Jul 14th, 2021 at 3:33am

Title: First post - First Group
Post by CDeBraga on Jul 14th, 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  :-/) from going every time.

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

Title: Re: First post - First Group
Post by AussieBrian on Jul 14th, 2021 at 5:04am

CDeBraga wrote on Jul 14th, 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.

Title: Re: First post - First Group
Post by CDeBraga on Jul 15th, 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.

Title: Re: First post - First Group
Post by AussieBrian on Jul 15th, 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.


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