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heavyhead
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New here..Think I have the beast
« on: Dec 23rd, 2004, 4:09pm »
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Hello everyone.
I am new to the site, though I have been a member of a different headache forum for years now
 
I've been suffering from extreme 'headaches' since childhood. I was diagnosed with migraines back in my teens. I am now questioning that
 
I've had little luck with migraine specific medications and dont suffer enough (imo) to take daily preventatives
 
Recently, I noticed a BIG difference between me and the migraine community I belonged to. I was the only one that would trash around and beat my head against the wall during an attack. It was then someone suggested the possibility of clusters
 
I have looked around the site some, but was hoping for a little imput from any of you. Does any of this sound familiar....
 
My headaches come on very quickly! Once I am in the swings of a headache I have only about a 1/2 hour window for medications to work or it will progress to an 8 or higher
 
Triptans dont seem to work for me except on the rarest occasion. It seems they take too long to take effect and by the time they start working, I am in pain beyond the point of return
 
When I have a bad attack, I am like a crazy woman! (note I am female) I run around, scream, bang my head or otherwise get violent, fall to the floor in exhaustion etc etc
 
Unlike migraines which others say can last 24 or more, mine seem shorter in duration. A few hours or so. Oddly, it is hard for me to tell when and how they go away. I am usually in dire pain for 3 hours or so, then I pass out or something. I never really figured out what happens. When I 'wake' back up, its usually gone
 
Mine mostly occur around my menstrual cycle, though stress can bring it on,  and maybe allergies. Again, not quite sure
 
Does any of this ring true to others here?
Just to note, I am without insurance and am VERY limited as far as medical treatments go. I see my dr every 4 months. I cannot afford medications other than perocets which I currently take. They work well if I take a dose early enough. Triptans dont work and are too costly
 
Thanks for any imput you might have
hh
 
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JJA
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The way Re: New here..Think I have the beast
« Reply #1 on: Dec 23rd, 2004, 5:50pm »
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The way you act when you get a headache does sound like clusters.  Thrashing and head-beating is very common here.  Cluster headaches rarely last 3 hrs or more, but they can (in fact mine usually do).  Triptans work for a lot more cluster heads than percocet, so that is unlike CH.  You didn't say if they occurred daily.  CH occurs every day like clockwork for weeks, months or years (for most).  If you get "clusters" of headaches then you may have found your new home.  There's a cluster quiz over to the left.  Take the quiz and see how you do.  Also, you might want to see a neurologist if you can afford it.  I hope you don't have clusters, but if you do you may be able to find relief on this site.
 
Jesse
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Re: New here..Think I have the beast
« Reply #2 on: Dec 23rd, 2004, 6:51pm »
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Jesse, thank you for the reply!
 
To answer your question, my headaches were daily about 2 years ago. It was debilitating. They didnt always 'peak' but they would be there everyday. Usually starting early afternoon about 1pm
 
Now a days, I get them for about 4 days straight every month, and yes, usually at the same time of day. I thought they were migraines brought on by my hormonal cycle. Now I am not so sure. I dont know if this is what they mean by a 'pattern' or 'cycle' though.  
 
Other odd things I have noticed is that my nose gets stuffed up right before I get a big one. I do have allergies and I'm usually congested, but this is different. Normally nasal spray works fine, but before a headache..nothing unstuffs my nose! I can tell everytime
 
I do at times throwup during a really really bad attack, but it seems more like a reaction to the extreme pain than from being nauseous. I also have a hard time regulating my temperature. I start to sweat and burn up...then I am freezing. Almost like I am in shock or something
 
The problem with the triptans for me is that I think they take effect too slowly. The time in the ER that I got a shot of Imetrex, it worked great! But by pill or nasal spray, none of the triptans seem to get the job done. Sometimes Zomig meltables...but not always. Meltable Maxalt makes me ill!
 
I am not in the position of seeing a neuro. I have investigated it, but cant afford it. They all demand an MRI to be done, and from my research thats in the ballpark of $1200+  
I could save for years and still not be able to afford one!! *lol*
 
Again, thanks for the help Jesse. I hope I dont have clusters either, but the unimaginable pain I get is just unlike what I have read with most migraine sufferers, or at least "different"
 
Its like wishing you could cut a hole in your head to let the burning pain find a way out!!!
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bobbio56
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Re: New here..Think I have the beast
« Reply #3 on: Dec 23rd, 2004, 7:30pm »
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You're on the right track. Nose spray and melters only work for mild HAs. Trex  injection however, is a Godsend. Very fast and efficacious. Good neuro with cluster knowledge and some prophylactic treatment is what you need. You came to the right place. Best  of luck! Things get better with proper treatment. Bobbio.
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bobbio56
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Re: New here..Think I have the beast
« Reply #4 on: Dec 23rd, 2004, 7:40pm »
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Oops, about the neuro part.......I was diagnosed accurately about 8 yrs ago. When Imitrex statdose became available my insurance co. wouldn't touch it. They also wouldn't cover the MRIs etc.
 
So,  I went to 3 local walk-in  clinics until I found a Phys. Ass't who had a decent knowledge of clusters. He sympathized with my problem and would hound the drug reps for injections to save for me.  For 3 years this angel provided me relief that I otherwise wouldn't have gotten. Just another idea for you.
 
Best of luck..................take it from me........shameless begging for the proper meds works, if it falls on the right ears.
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Kris_in_SJ
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Re: New here..Think I have the beast
« Reply #5 on: Dec 23rd, 2004, 7:59pm »
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Hi and Welcome.  Sorry you have to be here, but it sounds like you might be in the right place.
 
In fact, it almost sounds as if you might have a couple things going on considering the monthly cycle.
 
My best suggestion is to read all you can and print out stuff to take to your doc.  I would also suggest that you make really good friends with the nurse.  Fact is, docs (even GP's) get lots of drug samples.  It's worth mentioning that the Trex statdose worked really well for you once, and you'd like to try it again but can't afford it.  Chances are, you'll go home with an injector and a number of free syringes.  In addition, Verapamil (a good preventative if taken in fairly high doses) is very inexpensive.
 
The next best bet is to go down to the local fire department and talk to them about your condition.  Then ask if you can come in next time you get a HA for about 15-20 minutes of oxygen therapy (with a rebreather mask and at a high flow rate).  It has worked for some.
 
Here's a link that might help - take it to your doc.
 
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
 
Best of luck and many hugs,
 
Kris
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JJA
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Re: New here..Think I have the beast
« Reply #6 on: Dec 23rd, 2004, 8:03pm »
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Well,
 
I've never heard of anyone with clusters for 4 days every month, its usually more like 6 weeks every year, but a lot of other things match pretty close with clusters.  The stuffy nose and inability to control temperature sounds very familiar.  If you can't afford to get to a proper diagnosis, at least stick around here, read and ask questions.  People here know more about clusters than most doctors anyway.  Really though, if there's any way to get to a neuro...  I understand what you mean about the MRI$$$
 
Good Luck
 
Jesse
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heavyhead
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Re: New here..Think I have the beast
« Reply #7 on: Dec 23rd, 2004, 8:20pm »
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Wow! Thanks for the responses everyone Smiley
 
Just a few comments to make
Bobbio...I will ask about the samples. My dr is usually good in giving me some on each of my visits, but its a grab bag! I never get the same sample twice. The Zomig meltables worked a few times, but he never has any to give. Next time I go I will suggest to someone that it would be greatly appreciated if they manage to get some  
 
Kris...thank you for the welcome! I would like to try the oxygen. How wonderful it would be if that worked!! The Verapamil, wasnt an option. My b/p is pretty low as it is, about 90/60 most times. My dr thought any heart medication would take all the life out of me. Oh well....
 
And Jesse, the 'cycles' are what confuse me most and why I never before suspected that I had clusters. After years of discussing migraines with people though, the one thing I have learned is that everyone and every headache is so very different! Maybe this holds true for clusters as well
 
The stuffy nose thing though......wow! All this time I thought I was just nuts. See, its finding out things like this that make these forums so helpful!
 
Thanks again for the advice and replies!
 
 
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JJA
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Re: New here..Think I have the beast
« Reply #8 on: Dec 23rd, 2004, 8:36pm »
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on Dec 23rd, 2004, 8:20pm, heavyhead wrote:
...one thing I have learned is that everyone and every headache is so very different! Maybe this holds true for clusters as well
 It does. It does.
 
Jesse
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