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Topic: Newbie w/ possible CH diagnosis (Read 333 times) |
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Bond007
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Newbie w/ possible CH diagnosis
« on: May 18th, 2006, 1:03pm » |
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Hello everyone. My name is Jamie, and my GP is beginning to think that I'm suffering from chronic CH's. I'm 38 and was originally diagnosed with migraines when I was 22. My first attack (1990) lasted 5 straight days without any relief. My 2nd attack was a few months later and lasted about 21 days with only a few days of relief through narcotic intervention. My neurologist at the time put me on Inderal to reduce the frequency and intensity of the attacks and it worked. After a couple of years, my doc pulled me off the drug, but I kept a script around of cafergot for the infrequent migraine attacks, of which there were only a few over the next several years.
Fast forward to last October, 15 years after my most serious "migraine" attack. I had another severe headache attack that lasted about a week. By this time, I'd changed migraine meds a few times and finally settled on Frova, which is what my mom takes for migraines and it seemed to work for my occasional headache attacks. Not so in October, though. I simply suffered through it until it finally ended. The end of December I had another one for about a week and my GP had me start a daily drug -- I can't remember the drug now. It seemed to control the attacks, but the side effects were devastating to me, so we switched to Topamax in February. The switch triggered a 15-day headache. I only got relief through a couple of days when my doc gave me injections of either Toradol or Stadol and then those only lasted for a few hours. Since then, I've had 2 additional attacks, one in March that lasted for 15 days and I'm currently in one right now that started Saturday around midnight.
I saw my GP on Tuesday and he postulated that I may be suffering from CH's as I'm waking up with these headaches or they're starting late in the day. Every headache is about the same -- all focused behind my left eye, my left sinus gets all stuffed. The last few times the left side of my face "feels" like it's drooping, but I can't see any visible sign in the mirror. I don't get any red or tearing eye with these headches. They kind of feel like the "brain freeze" you get when you drink a milk shake too fast, if that makes sense. The pain is piercing and extremely intense to the point of excruciating. I prefer to hit my head against the wall than to lie down and try to sleep. I've asked my GP to prescribe a pain-killer that will knock me out just so that I don't have to deal with the pain because when I'm having these damn things, I cannot sleep.
My GP's a great guy, and he has refered me to a neurologist (I've moved since 1990 and never got a new neurologist where I live), but I can't get in to see him until some time in July.
Anyway, I don't know what to expect going forward. This has become a pretty scary thing to accept. I'm either suffering from status migrainosus or CH's. What I do know is that I've had a severe headache almost everyday since mid February (there were a few PFDAN) in there.
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Cathi04
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Re: Newbie w/ possible CH diagnosis
« Reply #1 on: May 18th, 2006, 5:21pm » |
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Bond..James Bond..........do you shake or stir?? I'm sorry.a bit of levity to welcome you and tell you I am sorry you find a need to be here.
There are some questions.well,
specifically 1.when you say you are having attacks, how long do they last. As in, are they relatively short in duration, but repeating, or are they MORE than several hours in duration?
Have you read the info on the right here?
Have you taken the clusterquiz?
I
would soo appreciate it if you would do just that.
Please let us know how your clusterquiz turns out.
Meantime, wishing you PF and answers.
Cathi
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Bond007
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Re: Newbie w/ possible CH diagnosis
« Reply #2 on: May 19th, 2006, 9:00am » |
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No prob about the levity Cathi. I could really use some humor right about now. I took the clusterquiz yesterday and the results were really kind of inconclusive. My headaches never really go away, meaning they're almost completely constant. They will crescendo into something highly excruciating that lasts for several minutes to a few hours, but they will eventually subside into a dull ache that just sits and stews until the next crescendo. So, I answered "YES" to questions 1 & 2, but "NO" to questions 3-8. On questions 9-16 my answers were once again scattered. My headaches are ALWAYS on the left side behind my eye or left temple. They have never woken me from a sound sleep, then again, I've been taking prescription sleeping meds that would knock out an elephant -- for psychiatric reasons. 11-14 were "YES", but 15 was a "NO". Once my headaches start, I don't get a break. Like I said before, the minute they start, it's more of an up and down cycle of severe pain to a dull ache that goes on for days. 16 was a "YES".
So, I guess I'm left wondering where that leaves me? I know y'all aren't docs, but from what I've read around this forum, y'all have been through an awful lot and have a ton of experience and more knowledge than many medical practioners out there today.
Oh, and yes, I've read just about all the info on the right, as well as many other sites about CH's. And, I'm beginning to wonder if my 2nd serious attack when I 22 wasn't really a cluster headache rather than a migraine. I remember pacing, banging my head against anything harder than my skull, being HIGHLY aggitated, anxious, going from periods of relative pain-free moments to severe periods, several trips to the ER to get something, ANYTHING, just for the pain.
btw, it's shaken, not stirred! 
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Bond007
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Re: Newbie w/ possible CH diagnosis
« Reply #3 on: May 19th, 2006, 10:37am » |
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I also wanted to add that I've recently had an MRI (2 weeks ago) that showed no abnormalities with my brain, such as tumor, lesions, or stroke. I've also suffered no recent head trauma, so that leaves my GP really wondering why my headaches have so abruptly intensified.
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Bond007
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Re: Newbie w/ possible CH diagnosis
« Reply #4 on: May 22nd, 2006, 8:51am » |
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Hmmm, tough room! 
Anyway, the headaches ended at 3:00 pm last Friday like someone flipping a light switch. It was the strangest thing. I was able to get a nice weekend of PFDAN's, but that all ended Sunday night about midnight when the headache struck again. This really sucks.
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Sean_C
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Re: Newbie w/ possible CH diagnosis
« Reply #5 on: May 22nd, 2006, 9:06am » |
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I'm no doc but the symptoms appear to fall in this direction. Check out the link and let us know.
http://www.achenet.org/articles/6.php
Sean.......................................
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Bond007
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Re: Newbie w/ possible CH diagnosis
« Reply #6 on: May 22nd, 2006, 10:03am » |
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That's an awesome link, Sean! Thanks for taking the time. I truly appreciate it. I'm taking this to my GP tomorrow and see what he thinks. At this point we're both willing to try about anything!
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Bond007
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Re: Newbie w/ possible CH diagnosis
« Reply #7 on: May 25th, 2006, 12:20pm » |
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I took the info to my doc, and he started me on a round of indomethacin as well as tested me for temporal arteritis, which came back negative. That was Monday. The headache started to subside a bit on Tuesday as it was just intermittent, so I was hoping the drug was starting to work. Wednesday the headache became worse forcing me to go home. Today is worse than yesterday. I'm starting to wonder if the indomethacin is even going to work.
Almost all morning I could feel some discomfort, but within the last 15 - 20 minutes, my left nostril has become severly congested and my left temple/eye has begun to feel severe pain and it's gradually mounting.
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thebbz
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Re: Newbie w/ possible CH diagnosis
« Reply #8 on: May 25th, 2006, 8:49pm » |
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Hope your getting through it.  Hang tough.
all the best
jb
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Bond007
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Re: Newbie w/ possible CH diagnosis
« Reply #9 on: May 26th, 2006, 9:16am » |
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Thanks man! My doc and I are actually leaning towards CPH (Chronic Paroxysmal Hemicrania) at this point. I'm getting some relief from low dosages of indomethacin, as my headaches don't quite line up with HC. They are more simliar to CPH, however.
My heart (and head) really goes out to y'all. I can only imagine what you must go through during your attacks. And, I'm only getting a slight glimpse of the magnatude of the pain y'all suffer. I really do hope and pray for PFDAN's for all of you. And, I do sincerely thank you for the help and support I've found here. This site really is a fantastic source of information for all headache sufferers, particularly the "non-traditional" ones. Y'all should be proud of the community you've established.
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