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Cluster Headache Help and Support >> Getting to Know Ya >> New here, not new to this. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1480460036 Message started by PatM on Nov 29th, 2016 at 5:53pm |
Title: New here, not new to this. Post by PatM on Nov 29th, 2016 at 5:53pm
Well, where to start? Have been suffering with chronic clusters for about 20 years, undiagnosed for about 17 of them. Diagnosed finally by a good family physician who referred me to a headache management and assessment clinic. Fully diagnosed by the neurologist's there.
For most of the time they were not too bad, relatively speaking. 2-3 days a week with a couple a day. After a very successful run on Topirimate which ended with me passing a kidney stone out in the field at work, they took me off of it, shortly thereafter, they became extremely frequent, 2-5 a day 6-7 days a week. I am in Calgary alberta and have been through a mass regimen of "spaghetti" medicating. Throw things at it until something sticks. Verapimal @ about 480 mg is the latest. Lithium made it up to 300mg but the issue with it was it was playing havoc with my thyroid. Topirimate as mentioned. Imitrex pills did nothing, the nasal spray I never tried as at the time it was contra-indicated with what I was on. Vit D daily for various reasons including us Canadians are chronically low. The imitrex injections are prohibitively expensive especially with the frequency, even with coverage they would not be paying 400$ a day to supply me, even with the trick of halfing doses, 200 a day is out of my reach. I work as a medic, so medically speaking I am somewhat knowledgeable. I have high flow oxygen via a generator, 11 lpm is the highest it goes and sits at about 96% o2 output with a non-rebreather mask. I have been through a few other meds which I cannot remember, probably have half full scripts sitting ion my cupboard I could look at. The reason I am here, my treatment options are fairly covered, it is looking towards possible surgery at this point as I am exhausting medication options. I am sure I am rambling but in my "headache hangover" phase. The pain is like a nailgun loaded with a railroad spike fired into my right eye, exiting my temple, then someone loops the ends and hangs me from it. At it's worst, thankful the "10" headaches are not as common as the 7-9. Abortive measures, o2 helps, ketorolac helps combined with Tylenol, mostly they round off the sharp edges. For the worst of them, Percocet does not seem to dull the pain as much as make me care about it less, if it makes sense. They last from 1.5-3 hours, I seem to be atypical in the fact I was have never been a pacer or walker. It tends to agitate me, but I have no need for the pacing or thrashing typical. Swearing and extreme anger tend to accompany them for me. Or at least extreme irritability. I think in the end, it is just nice to know others know what it is like. |
Title: Re: New here, not new to this. Post by PatM on Nov 30th, 2016 at 2:30am
Thank you, I will have to try the redneck reservoir. I realize now, that higher concentration or higher flow is needed, beyond what the concentrator can output, your method seems to be able to provide that.
I do know at one time oxygen hyperventilation was a method or indicated in trauma patients, it has since been discontinued, I believe due to it being administered ineffectively across pre hospital care professionals, simply because of mechanical issues for the most part. Non effective seals etc causing less o2 to get onboard a patient. Either way, I am ready to remove a limb if someone said that would rid me of them at this point, so I will try anything. As it stands the o2 therapy with the concentrator simply takes the edge off a headache. From a 9 to an 8 or so, which does not seem like much but I think most here would take that as a victory. Sometimes I think the loneliest time in the world is 4 am sitting alone in the dark with an o2 mask on praying it helps even a little. |
Title: Re: New here, not new to this. Post by Peter510 on Nov 30th, 2016 at 9:30am
Hey Pat,
It seems you are an old hand so I don't know what to say other than welcome. There are lots of friends here who know what it's like. Just a comment about your O2. The minimum flow is recommended at 15L/minute. I know you won't get this from an Oxygen converter which is why most of us use tanks. You would find better relief at that flow rate. Also, I see Batch has contacted you about D3 and it's really worth listening to his advice. Regards, Peter. |
Title: Re: New here, not new to this. Post by jon019 on Nov 30th, 2016 at 4:17pm
I am in the library and just read the above post by Batch. I almost stood up and cheered.
What a concise, cogent, entertaining read that conveys critical information to the clusterhead family ... better than any dusty worded textbook I've ever read on ANY subject..... BRAVO!!!!! |
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