Jump to content
ClusterBusters
Sign in to follow this  
its okay

the joy of CH

Recommended Posts

Hi new friends, little bit about my situation with the miserable head aches.
Probably started 21/22 no idea took everything that said 'pain relief' of course nothing work some numbed it help fall asleep but not much help.
Finally went to the doctors confirmed they we most likely CH's. My period begins the same time every year. Generally June/July and hopefully finishes early/late August. Not so bad, i do recognize this and have come to terms with it (this helps a lot). 
This period started exactly 1 July, currently 27th July. Head aches are generally 1 every day, seem to be spaced like this.
CH at 6am (1 hour before can function again)  this will happend 2-3 days then the CH will be at 3/4am waking me up (1 hour before back to sleep) 1/2 days, before reverting back to 6am. (rough guide)
Triggers are alcohol, other then that seems to be episodic.
The pain is enough for me to lay on the floor, fetal position wondering what on earth i did to receive this pain. Blood shot eye, runny nose i have also noticed body temperature goes up, as we are in winter and can quite comfortably sit outside breathing cold fresh air without been cold, anyone else notice this? (albeit i live in Australia so not what some might call cold)
Currently take 80mg 'Relpax' this is a eliptran. These are good if take at first sign of CH keeping pain for an hour, as compared to 2-3 without. 80mg is to much for me so break pill down to thirds/half depending time and location of CH. Been using these for 2/3 years now. Side effects are drowsiness, if i go back to asleep i will sleep through alarm, but can still function at work with this side effect. Seem to be experiencing some sensation in the arm when i take these pills (will be keeping an eye on this!)
180cm tall, 75kg, physically active, healthy, eat well, no other diagnoses. Unfortunately am i smoker.. 10 or so years now.. how time flies haa.
Anyway that's about it, this year they seem to be a little softer either that or i am managing the pain a bit better. I would like to talk to an Australian who has managed to get hold of the correct Oxygen set up, as it seems to be a few hoops to jump through over here.

Thanks for reading, Very grateful that there are others out there with this problem, as when you tell people they response is always 'oh wow have you tried this or that' no Karen it isn't that simple..
Good luck to us and hope all is well.

 

Share this post


Link to post
Share on other sites

Welcome its okay,  

As many have said, glad you found us, sorry you have to be here. :)  Those other CH'ers and supporters here are great people.  Oh have you tried aspirin and laying down yet?  (ok, kidding.. )

There are several Aussies that check in here, try a search and see who you can tag (if you need help reaching out, drop me a note).  O2 is definitely the best abortive out there.  No side effects and it's very cheap (and mostly easy) to obtain.

Cheers,

J

Share this post


Link to post
Share on other sites

Hey @its okay welcome to the forum

I was on relpax for my “‘migraines” for a while. I put migraines in quotes because I don’t gave migraines I have CH. And I’ve been to 6 neurologists so you can imagine my frustration. I even had a neurologist tell me to get a massage! For a $200 co pay I was told to get a massage. Gotta love it. The only thing that has helped me manage these headaches is this forum. I’d be lost without it. No matter how much research and googling my loved ones do, they will never fully understand. This is a safe space, post frequently and any time you have a question. I am still considered a newbie with Ch but I will help if I can. 

I would immediately start on the d3 regimen if I were you. It’s cheap (er) than most meds. And you can find most of the supplements in the grocery store. I would check amazon for the bio tech water soluble D3-50. There is a document on the forum somewhere with all the details. Possibly ask ur doctor about starting verapamil. Some people have success with that. Also, it is important with the vitamin regimen to drink tons of water! Keep us posted

kat 

  • Like 1

Share this post


Link to post
Share on other sites

I also need to add that you should get a blood test done to check all of your vitamin levels. Your general care practitioner can order this for you. There are also some websites where you can pay for the test and go get the blood work done at a lab. They will email ur results 

Share this post


Link to post
Share on other sites

I hope you get some good help with getting O2.  I would also check in at the Facebook group "Cluster Headache (trigeminal autonomic cephalagia)".  A pretty strong international representation there.  There's a link to D3 regimen basics in this post, which might also have some other ideas for you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

 

  • Like 1

Share this post


Link to post
Share on other sites

If you are in Facebook there's also "Australia New Zealand Cluster Headache Support" group which has to be ok since I am still a member B) (there are the non-ok groups too)

Feels odd writing this but I currently have this great gratitude for having cluster headache and thankful of everything it has brought me in life.

  • Like 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×