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Cluster Headache Help and Support >> Getting to Know Ya >> Canadian Newbie http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1479869278 Message started by Hartsy on Nov 22nd, 2016 at 9:47pm |
Title: Canadian Newbie Post by Hartsy on Nov 22nd, 2016 at 9:47pm
Hello there,
My name is Mike I'm a 29 year old Millwright/Paid on Call Firefighter near Calgary, Alberta, Canada. I'm now in my 10th year experiencing cluster headaches. Or should we say 8 year having "migraines" 2 years seeing a headache specialist in Calgary actually treating me for Cluster Headaches. I was very happy to see a website like this as I do have many questions as I've been diagnosed with Atypical Cluster Headaches as my headaches last sometimes up to 12 hours if I don't manage to fall asleep or go to the Emergency Room. I share all the same symptoms of cluster headaches otherwise. My clusters typically come once a year and last 2-4 weeks. As of last summer I have now had a cluster in every season. So far my biggest challenges have been being misdiagnosed early on as I see most of you share and medication inconsistency. The medication is my biggest concern, I experience over the course of my cluster two different pain scale headaches. The ones I consider to be a 5-6 out of 10 on a pain scale normally can be treated with High Flow oxygen bringing it to a state in which I can function and minor pain in my temple will just linger for another 2-3 hours. The other I consider to be a 8-9 out of 10 on a pain scale in which High Flow oxygen does not even touch it and I'm left to an IV with Morphine in which after treatment managable pain lingers in my left temple, around my eye and in my left nostril for typically another 5-6 hours after Morphine. My headaches are usually a 2:30am wake up call however I have had onsets through out the course of the day before. I have now pretty much had every common treatment/medication fail. However as I'm a week into a cluster as I'm writing this I've just come home from Emerg with some Imitrex injections to try. I am really hoping these will work as I've been working very hard towards becoming a full-time firefighter but because I have no solution as of yet I would not be accepted on the department right now as it stands with how long my headaches last and the fact that my only refuge is going to Emerg. I used to be scared of being out in public and getting a headache and what I'd do. Now its every time I'm in the fire truck I have that pit in my stomach hoping I don't have to battle through a call with a headache. So any suggestions would be greatly appreciated with your years of experience! Thanks for reading my post, Mike |
Title: Re: Canadian Newbie Post by AussieBrian on Nov 23rd, 2016 at 3:58am
G'day, Mike, and welcome to a place where we reckon all headaches are horrible.
There's a heap of information here, along with so many people who truly care, because we know what it's like from the inside. There's plenty help a-coming, Brian, eh. |
Title: Re: Canadian Newbie Post by BobG on Nov 23rd, 2016 at 5:52am
Hello Mike. Welcome.
On the left side of your screen is an "imitrex tip". Check it out. Have you read up on the vitamin D3 treatment? Ask your doc about a Prednisone burst with Verapamil for long term. Sometimes a quick shot of an energy drink, Monster, Red Bull, etc will knock down the pain. Read, read, read. |
Title: Re: Canadian Newbie Post by Peter510 on Nov 23rd, 2016 at 6:43am |
Title: Re: Canadian Newbie Post by Hartsy on Nov 26th, 2016 at 4:48am
Hey guys,
My apologies for the late reply as stated earlier I'm mid cluster and have been off work as of Tuesday after seeing my Neurologist. I was put on a Prednisone burst last week but by the Emerg doctor and later found out Tuesday not a big enough burst so I'm on second one now starting at 70mg tapering to 5 over 16 days. I've been given Verapimil pending a prednisone failure. I've now been given oxygen for home after not responding numerous times to it in Emerg (by the time I get there it's too late) . In addition to that I've been given the imatrex injections. It seems the major hold in treatment for me has been not treating the headache before it reaches full potential. I have now read up on D3 and really I'll try anything. Where I'm finding myself kind of torn is it's seeming my cluster frequency is very mild compared to some of you poor folks. So I guess if I have another failed prednisone attempt is the Verapimil going to be a regular drug for me to stop one 2-4 week cluster a year. I guess if it doesn't mess with my blood pressure too much why not. Some food for thought my neurologist is still concerned to a point with how long my headaches actually last. Thus diagnosing me with atypical clusters, does anyone else experience this? As stated earlier Sunday's headache lingered 6+ hours post morphine and a healthy dosage of it at that. They said they'll be looking into a different diagnosis if I don't react to all these common treatments. I don't know I think sometimes I'm a bit of a second guess type of guy, I still don't know a lot about these and hold onto why do mine last longer and also I see some people and also my pain is experienced in same places same symptoms, only I'm not freaking like I've seen some people during an attack, I'm am still totally in a debilitated state , droopy left eye watering, shaking and crying, butvi don't bang my head against the wall or curl up in a ball mainly cause I can't stand still. Am I just reading into this too much? |
Title: Re: Canadian Newbie Post by maz on Nov 26th, 2016 at 6:21am
Hi Mike.
One thing we have all learned is that no two people, no two cycles, and no two attacks are the same. I don't have proper cycles at all. Mine seem to come and go randomly although I do have periods where they are more frequent. Then I'll have a short remission but right in the middle of it I'll get one bad attack, then nothing for days. I've had attacks that have lasted 5 minutes and stopped as suddenly as they start, and I've also had one (thankfully only one) that lasted 14 hours, but most last 45 minutes and I can set the clock by them. For the nine years I've had clusters they have always been on the right side, but last week I had a sudden flip to the left. Imitrex injections are an absolute godsend. They work for me in 5-7 minutes, even for the worst attacks. Ten minutes later you would never know I'd had an attack. Some people do report nasty side effects, but I don't have any. I never leave home without them. If they are expensive for you, or difficult to get, read the imitrex tip, on the left side of the page. I do this all the time and find 3ml works equally as well as the full dose of 6ml. So you can get two doses from one injection. Much gentler to use too. Also, read up here about the vitamin D3 regime which most people are getting huge relief from. The symptoms, and your reaction to an attack are very "normal" (if such a thing could ever be called normal), but as I said, we all react differently. Keep coming back and read everything you can here. There is more knowledge on this site than all the neuro's in the world put together. After 9 years, I would still not have a diagnosis if I had not come here. Maz. |
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