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Cluster Headache Help and Support >> Getting to Know Ya >> New Member Introduction http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1558898619 Message started by jjgarcia on May 26th, 2019 at 3:23pm |
Title: New Member Introduction Post by jjgarcia on May 26th, 2019 at 3:23pm
Hello everyone! I recently learned of this website and I'm already grateful for it. I’ve suffered from cluster headaches for 22+ years (since 18 years old) and only within the past few years was I told what they were. They seemed to have started after I was in a severe accident where the car rolled and my head smashed against the passenger side window (the side all CH are). I’m at the beginning of a new cycle and my last one was about 4 years ago... thank God. I believe frequent massages and exercise played a part. I’m not a big medication user so I usually just ride them out... very painful. My doctor prescribed me Imitrex, which I’ll pick up today. My headaches seem to be more frequent during this cycle. Yesterday I had 3 in one day but they don’t seem to last as long. I’m very analytical and keep trying to find a pattern or triggers and I’m getting nowhere. Anyone else notice a pattern, what makes them worse, more frequent, etc? Are they muscle or nerve related? I look forward to learning from each of you and adding support where I can. Thank you! - Jesse
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Title: Re: New Member Introduction Post by jon019 on May 26th, 2019 at 8:07pm |
Title: Re: New Member Introduction Post by Peter510 on May 27th, 2019 at 4:18am |
Title: Re: New Member Introduction Post by AussieBrian on May 27th, 2019 at 4:42am jjgarcia wrote on May 26th, 2019 at 3:23pm:
G'day JJ, and welcome. Imitrex comes in a number of forms. The pills are generally thought to be too slow-acting to be much help when the monster rears its ugly head while the nasal spray works much, much more quickly. The injectable variety is seriously preferred by most people and we've many tips on how to get best effect for the least money and worry. Only better days ahead, Brian down under. |
Title: Re: New Member Introduction Post by jjgarcia on May 28th, 2019 at 12:44am
Thank you! I received the Imitrex injection but luckily I haven't needed it yet. I've been drinking a lot of water and dramatically reduced sugar and alcohol intake.
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Title: Re: New Member Introduction Post by jon019 on May 28th, 2019 at 1:31am
...Oxygen and D3.... and ya might not need the Imi…….ever
...my triptan of choice was Zomig NS...nunna the side effects of Imi...keep that in the back of yur mind..... ….BTW...some have reported head trauma as an instigator of CH...nothing you can do about that...speaking of back of the mind...prevailing theory of causation for most is a wonky hypothalamus....nothing ya do about that (yet) either ....that's why there be ch.com.... ….alcohol is a trigger for most clusterheads (lesser so with chronics) so if yur looking for triggers it would be #1 in the book...…………. ...tossing down an energy drink with at least 120 mg caffeine and 1000+ mg taurine (buy by price not brand) taken cold and fast at first sign of a hit...and preferably combined with O2.....and it's happy dance time..... |
Title: Re: New Member Introduction Post by Mike NZ on May 28th, 2019 at 3:45am
Hi and welcome
Some great advice above, especially about D3 which has worked wonders for many of us, with some (including myself) going multiple years CH pain free. There is limited direct medical evidence between CH and head injuries, but there are multiple people who have posted here with a strong link between when CH started and a head injury (including myself). So don't let anyone who tells you it can't happen get to you. Read up all you can here and ask any question you have. We're not medical doctors, but we are expert patients as we know CH all too well from person experience or supporting someone with it. |
Title: Re: New Member Introduction Post by MDR on May 28th, 2019 at 7:23pm
alcohol BIG BIG Trigger
Mark. |
Title: Re: New Member Introduction Post by jjgarcia on May 29th, 2019 at 12:52pm
WOW! Such great advice... thank you all. I wish I found CH.com earlier. Last night was a bad one. It was the worst headache during this cycle. Hit me at 10:45pm and lasted until approximately 2am. I have my injectable Imitrex but it said take at the first sign and I thought it would pass, but didn't. I ended up taking it about 2 hours later when I couldn't take the pain anymore. It took about 45+ mins to kick in. That was my first time taking the injection.
I woke up with my head and right eye still hurting, but manageable, drank some coffee and popped a few Excedrin. I didn't have any alcohol yesterday but maybe too much sugar...? Today I'll drink a lot of water, no sugar or alcohol and my wife (who feels absolutely helpless as she stayed up with my last night) ordered my D3. I've always believed that my headaches originated from my car accident but no way to prove it. Does anyone think they could be triggered by a muscle strain or injury in the neck or shoulder? I seem to find a pattern there as well, whether working out, playing sports or sleeping wrong. Trying to make sense of it all and seeing what I should avoid. Thanks everyone! |
Title: Re: New Member Introduction Post by jon019 on May 29th, 2019 at 2:54pm jjgarcia wrote on May 29th, 2019 at 12:52pm:
….many clusterheads experience what we call a "cluster lump" in the neck area....so you might be seeing a symptom rather than a cause....others here might comment on that as I have never had. (AussieBrian?). Others have reported neck issues from the physical manifestation of cluster hits like twisting, banging, thrashing, hitting your own head, yadda yadda yadda....and always possible to have multiple headache types, like tension headaches to spice up your CH life....a hot and/or cold shower, ice pack (frozen peas work good too), heating pad, etc would be worth a try for BOTH types.... …..careful with the Excedrin...many find helpful for shadows (small hits) but it will tear up your stomach and is useless for regular hits....probably the caffeine content that is helping anyway... ...do you have a headache specialist doc...it could be critical as many PCP's have limited, IF ANY, knowledge of CH...and throwing Imitrex at it is right out of a book when OXYGEN is the first line abortive (in medical lit and everything!) that should be tried first or at least in conjunction BEFORE "here's your Imitrex script...good luck....see ya"..... ...OXYGEN saved my sanity, perhaps my life...and I aint alone by THOUSANDS.....relatively cheap, NO SIDE EFFECTS, easy to use, can be portable, fast acting...have you or your doc considered!? ….many find the D3 regimen (The WHOLE thing) to be near or totally effective...but I bet most keep an O2 tank standing by JUST IN CASE...it's fun to write your name in the dust on a revered buddy... |
Title: Re: New Member Introduction Post by jjgarcia on May 29th, 2019 at 4:27pm
Awesome advice! Thanks. My doc did bring up O2 but said it could be expensive and that I should go to the emergency room first to see if it works before ordering.
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Title: Re: New Member Introduction Post by jjgarcia on May 29th, 2019 at 5:37pm
Is there a particular brand of D3 or "dosage" that is recommended?
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Title: Re: New Member Introduction Post by jon019 on May 29th, 2019 at 5:38pm jjgarcia wrote on May 29th, 2019 at 4:27pm:
ummm….well, I wanna say something nasty about your doc.....but I won't... ...if you have insurance your O2 cost will be negligible...if you don't, then self pay either at the O2 shop or welding O2 is reasonable... ...ONE Imitrex script costs more than about 3 months of O2... ...the last time I was in the ER cost $10,000....no hospital stay ...many fire stations will treat you with O2 for free....might help to visit first and give them a heads up that you have CH and O2 is the first line abortive (mentioning that it will save them an emergency run could only help)... |
Title: Re: New Member Introduction Post by jon019 on May 29th, 2019 at 5:41pm jjgarcia wrote on May 29th, 2019 at 5:37pm:
...see Peter's post above with link.. |
Title: Re: New Member Introduction Post by AussieBrian on May 29th, 2019 at 11:47pm jon019 wrote on May 29th, 2019 at 2:54pm:
Ahh, the old cluster-bump. For years I thought it the cause of this nightmare and tried no end of things to get rid of it. Massage was the obvious which was very nice, I admit, and completely useless. Hot and cold compresses certainly made me feel I was doing something constructive but that's about all I can say for that line of attack. A specialist neurologist offered me a course of seriously expensive injections into the bulge and they're without doubt the weirdest thing I've tried. It felt like crystallised urine being pushed out of a horse-needle and was just as effective. Made my wallet hurt more than my head. I've seen a number of proper scientific pictures that show the thing is real and it appears to be an inflammation of a ganglion of nerves in the back of the neck and these are in many ways associated with CH - so it's not entirely our imagination. Equally, a good friend of ch.com got excellent results with his TENS machine by putting one of the electrodes exactly on the cluster-bump. So is this lump the cause or the result? I'm still not sure, but even the tiniest hint of a twinge in just that spot still sends chills down my spine. Hope this helps, JJ, but in the meantime keep considering everything else as well. Keep working on the O2 because it's truly worth the effort and our friend Batch will send you everything you need to know about the D3 regimen which is showing excellent results. Only better days ahead, Brian down under. |
Title: Re: New Member Introduction Post by jjgarcia on May 30th, 2019 at 4:43pm jon019 wrote on May 29th, 2019 at 5:41pm:
Thank you! Link is not working. |
Title: Re: New Member Introduction Post by jjgarcia on May 30th, 2019 at 4:45pm jon019 wrote on May 29th, 2019 at 5:38pm:
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Title: Re: New Member Introduction Post by jjgarcia on May 30th, 2019 at 4:46pm
I just saw the recommendations. Getting used to this UI.
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Title: Re: New Member Introduction Post by jjgarcia on May 30th, 2019 at 4:49pm
Thank you!!! This makes total sense and I have a tens unit so I'll try it. I'll stay away from the crystallized urine for now haha
AussieBrian wrote on May 29th, 2019 at 11:47pm:
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