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new to this forum, not so new to ch. (Read 751 times)
tripspots
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Canada, smithers, BC
new to this forum, not so new to ch.
Apr 11th, 2012 at 12:42am
 
well i started getting ch when i was 16 years of age. no one ever really new what it was and after many visits to my family doctor, eye doctor, and neurologist.. not one of them could explain my phenomenon. i had MRI, cat scans and blood work done with a couple others i cant quite remember with still  no diagnosis. the biggest mistake made by my family doctor after trying many medications was to just use pain meds. i was only 18 at the time and didn't even know the medications i was given. just took what i was told. after about 2 years of being on a pain med called oxycodone and gradually abusing the dosages i was prescribed.. one thing led to another and i found myself from going to 40 mg of the medication daily to 2 years later buying these meds off the street and up to about 160 mg daily. just to get through my day. to make a long story short i got on a drug called suboxone to get off the oxys.. i will add that during the whole time being totally numbed to life on these pain pills i never once got my ch.. not once. I'm not sure why but this is a fact. even while being put on a maintenance drug suboxone which is just another opiate in my research. anyways i'm now 27 and just one month to the day kicked the suboxone.. it was hell and i'm still not quite out of the post acute withdrawals.. but that's for another site i guess. the reason i'm here is because as of 4 days ago my cluster headaches are back in full force.. i can only guess that it is due to my brain returning to where it once was.. but that's an uneducated guess. it hasn't gotten past a kip 8 yet.. but everyday is getting worse. another thing is i remember that i never used to get more then 2 a day and i have noticed in the last few days ive been getting around 4 a day lasting anywhere to 30 min to 45 min and the shadows lasting hours on end. the only prevention i can remember using when i was younger was o2 which never really did much besides keeping me from almost having seizures, when i hyperventilated and energy drinks on  onset. I'm just here to let u know my story.. i have been researching quite a bit as it looks like a lot more people have come out on the net than i last remember over 10 years ago when i was just a teenager looking for help. i remember back then no one understood my pain and i remember suicide at one point in my life wasn't to far outta of the question. i have a family now and that will never be the case but man am i ever scared to have this devil on my back.. especially when i just kicked one off 1 month to this day. thank you for your time and sorry for any grammar/spelling errors as this is all being typed up on my cellphone.
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-dvb-
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Re: new to this forum, not so new to ch.
Reply #1 - Apr 11th, 2012 at 12:09pm
 
Welcome, new here my self (diagnosed w/ CH last month). There will be plenty of more "qualified" folks here shortly I'm sure with lots of great info for you. You're in the right place. There is alot of knowledge contained within these pages.

I don't know anything about oxycodone or suboxone, but it could just be you're episodic like many people here (I went 4 years between my previous cycle and my current one!).

I'm currently following the Vitamin D3 regimine (found in the Medications, Treatments, Therapies section...123 Days PF thread.). Is helping me and has helped many others. It's long read but worth it. Please take a look at it.

Find you self a good neurologist or headache specialist (check the OUCH website link at the left). I'll leave the O2 and other discussions to the experts.

Good Luck and Welcome,

-dvb
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« Last Edit: Apr 11th, 2012 at 12:44pm by -dvb- »  
 
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Bob Johnson
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Re: new to this forum, not so new to ch.
Reply #2 - Apr 11th, 2012 at 4:06pm
 
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
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Bob Johnson
 
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tripspots
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Re: new to this forum, not so new to ch.
Reply #3 - Apr 11th, 2012 at 6:00pm
 
I live in Canada, Smithers, British Columbia and I will update my profile right away.
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erk
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Re: new to this forum, not so new to ch.
Reply #4 - Apr 11th, 2012 at 8:45pm
 
This site has helped me and many others. Glad you found it!
My ch started much like yours in my teenage years. And like you trips to the med. dr., eye dr. and still didnt know what they were. But thankfully they went away for the most part until my late 20's. Have been episodic for the last 15 years.

Glad your off pain meds. You'll find the people here dont give them any merit for ch relief. Most likely you went into
remission like I did.

You need to be working with a med dr., neuro., or headache specialist to get you on the right stuff for relief . In the mean time try  the energy drinks again(monster, red bull, etc) . They have really helped me abort or reduce the headaches intensity.

The is a ton of great info. on this site. So study the posts in the message board. And good luck with all your dealing with!


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« Last Edit: Apr 11th, 2012 at 9:05pm by erk »  
 
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wimsey1
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Re: new to this forum, not so new to ch.
Reply #5 - Apr 12th, 2012 at 8:15am
 
There's so much ground for you to cover, and hopefully your cycle will be over soon. But please do read the O2 link at the left. Normally prescribed O2 at 8-12lpm with a rebreather mask won't do much. But high flow O2 at 25lpm+ with a good nonrebreather mask will help tremendously. Along with an energy drink, and occasional use of imitrex injections. The preventatives we need are not exclusive to CHs but in high enough doses can work to manage the beast. You have a bit of a journey ahead of you as you explore the best way to fight back, but it does begin with a knowledgable headache specialist. Good luck, keep us posted, and God bless. lance
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