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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Newbie from Canada needing help

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Newbie from Canada needing help (Read 1060 times)

Daniel Cook

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Newbie from Canada needing help
Aug 27^th, 2010 at 4:52pm

Hi everyone! Let me first start out by saying I’m SO happy I actually found someone that knows the paid I’m going through on a day to day basis.

I'm 25 years of age, male from Vancouver BC Canada. I consider myself to be extremely healthy and I exercise daily so I got completely caught off guard when I was diagnosed with CH.

It all happened August the 8th (not too long ago), when I returned from an extremely stressful business trip in Hong Kong. The next day that I returned I felt the worst pain I’ve ever experienced in my life and thought I was going to die. Yes it was all the typical symptoms, pain behind the eye, right side of the face, red eye that’s watering, intense pain which feels like my teeth are being drilled, drooping eye and even problems seeing.

I got rushed to emergency, at first they got I had meningitis and did a full CT, MRI, spinal tap etc... Eventually they knew it was CH. Ever since that day (2 weeks and counting) I’ve been getting cluster headaches at midnight pretty much every night and around 1pm then again around 5pm? A couple times it’s missed those marks but they tend to be on time... how nice of them eh

Neurologist confirmed, as put me on oxygen, divalproex, imitrex nasal shots, and today injections, also zomig nasal shots as well.

My attacks aren't really going away,,, and I was wondering if there is anything else I can be trying? Will my attacks end? Am I stuck with these forever? What are my next steps....the neurologist scheduled a follow up appointment with me in 2 weeks to see how I am doing.

Melatonin doesn't seem to keep me sleeping throughout the night.... and I seem to wake up every morning with a cluster... the cluster has now switched sides to the left its driving me insane!

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Guiseppi

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Re: Newbie from Canada needing help
Reply #1 - Aug 27^th, 2010 at 5:01pm

Couple of things......talk to your neuro about adding a preventative med to your mix, a med you take daily, while in cycle, to reduce the number and intensity of your hits. I use lithium at 1200 mg a day, blocks 60-70% verapamil is a common first line prevent and topomax has a loyal following. Some end up having to combine lithium and verapamil to get relief.

I googled the divalproex and see it's used as a prevent for migrains, I have not heard of it being used for CH, and it appears if it was his intent to use that as a prevent, it's not working for you! Wink

Outside of that you stumbled accros a doc who is really up to date on CH......I can't tell you what a lucky man you are. Many of us go up to 10 years before getting diagnosed correctly, and even longer to get prescribed the correct stuff....specifically oxygen...to stop the damned things! Thank him/her for knowing his CH stuff, we need a few more like him/her out there!

A quick check to make sure you're getting maximum benefit from the 02. A Non Re Breather Mask, A high flow regulator of at LEAST 15 LPM, preferably one that goes up to 25 LPM, get on it at the first sign of a hit. Nasal canulas, re breather masks, low flow rates, all are recipes for failure with 02 therapy.

Do you have them for life? Yeah, probably. Is it the end of the world? No, I've survived 32 years of them and they haven't got me beat yet! Welcome to the board.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Daniel Cook

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Re: Newbie from Canada needing help
Reply #2 - Aug 27^th, 2010 at 5:20pm

Hey thanks for the reply!! i will for sure ask about topimax or lithium, additionally i do have a great oxygen tank that allows me to go up to 25 and with a mask rebreather that allows me to have 100% pure oxygen, my tank just ran out and i need to upgrade that to the S tank we have in canada.

thanks for your suggestions and i will keep everyone posted! just had an attack and managed to keep it at bay with oxygen but ran out! damn!

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bejeeber

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Re: Newbie from Canada needing help
Reply #3 - Aug 27^th, 2010 at 7:56pm

Hey Daniel, sorry to hear about your August surprise, the likes of which nobody ever wants to experience, but glad to hear that you got a relatively quick diagnosis and treatment plan together, even including hi flow O2!

I had good results with my last episode aborting the hits with O2, and if that didn't work, using an imitrex injection. here's a crtical imitrex tip for stretching your doses/lessening side effect risk in case you haven't seen it yet: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Daniel Cook wrote on Aug 27^th, 2010 at 4:52pm:

Will my attacks end? Am I stuck with these forever?

The majority of us are episodic, so you very well may only have these for something like 1 month out of the year, and as the decades fling by, the remissions may become longer and longer. I've read plenty of anecdotes about how by the time we become elderly it just tends to burn out and go away. No guarantees about any of that though.

Daniel Cook wrote on Aug 27^th, 2010 at 4:52pm:

I was wondering if there is anything else I can be trying?

Harvard Medical et al are launching trials regarding sub hallucinogenic doses of psychedelics such as psilocybe mushrooms, this after many CH'ers here and at clusterbusters.com who are in no mood to wait around for trials have reported impressive preventative results with them. If this interests you, here's a video talk on the subject by one of our fellow CH'ers for starters: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Daniel Cook wrote on Aug 27^th, 2010 at 4:52pm:

Melatonin doesn't seem to keep me sleeping throughout the night.... and I seem to wake up every morning with a cluster... the cluster has now switched sides to the left its driving me insane!

Are you taking 9mg? That was the recommended dose for CH last time I checked. It appears that it helps some people, doesn't help others. Didn't do anything for me.

« Last Edit: Aug 27^th, 2010 at 7:57pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Daniel Cook CH.com Junior Offline I Love CH.com! Posts: 29	Re: Newbie from Canada needing help Reply #4 - Aug 28^th, 2010 at 6:55pm Hi there! just wanted to say i bumped up my melatonin to 12 MG and was able to finally get a full night sleep! it really gives you the strenght to fight through the DAY.
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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: Newbie from Canada needing help Reply #5 - Aug 29^th, 2010 at 12:23am Daniel that's excellent news! Let's hope that you get some relief at night so you are more refreshed. Did you get your O2 refilled too? Also alot of folks drink an energy drink in addition to the O2 ---sort of to help ward off any shadow headaches afterwards.
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Lettucehead CH.com Old Timer Offline I am very blessed... Posts: 293 Iowa Gender:	Re: Newbie from Canada needing help Reply #6 - Aug 29^th, 2010 at 12:29am oh man, a full night's sleep while in cycle is worth GOLD!!!!
Back to top	Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH IP Logged

wimsey1

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Re: Newbie from Canada needing help
Reply #7 - Aug 30^th, 2010 at 8:10am

Daniel Cook wrote on Aug 28^th, 2010 at 6:55pm:

Hi there! just wanted to say i bumped up my melatonin to 12 MG and was able to finally get a full night sleep! it really gives you the strenght to fight through the DAY.

Yup...sleep is the best! And when I started Melatonin, I ran across something somewhere...how's that for annotation?...that suggested 9-18mgs for CHs. 6 had no effect...9 had no effect...12 little effect...and 15mgs has been the magic number for me. Much higher than the label recommends, but that's true across the board, I think, when it comes to dosages and CHs. Prayers for a pain free day and night! lance

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bejeeber

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Re: Newbie from Canada needing help
Reply #8 - Aug 30^th, 2010 at 12:46pm

wimsey1 wrote on Aug 30^th, 2010 at 8:10am:

.... when I started Melatonin, I ran across something somewhere...how's that for annotation?...that suggested 9-18mgs for CHs. 6 had no effect...9 had no effect...12 little effect...and

15mgs has been the magic number for me

...

Interesting! I'm definitely making a note of that! Shocked

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