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Topic: Is this cluster??? (Read 424 times) |
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Cendie
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Is this cluster???
« on: Jul 19th, 2003, 10:35am » |
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I have migraine, I know this isn't it. This is the 3rd such episode I have had, it lasts for about month, hit in 97,00, and now 03, in the summer each time. This time I had diagnosed myself into believing it was a sinus infection until the xray yesterday showed it wasn't sinus.
I'm literally banging my head against the wall and my fists against my head. I'm having far too many fantasies about plunging sharp objects into my left eye. My eye hurts, my forehead hurts, my nose hurts, my upper jaw hurts, I can't take it anymore.
I'm the OTC queen, but before the stuff has had a chance to kick in, the intensity is gone. I'm not painfree, there is still a slight nagging headache on my left temple/forehead area.
 I still have a sensitivity to light, some days.. it's not like migraine though, I don't get any sparklies in my vision to warn me that this thing is coming.
I've run the rat race they put you through when you complain of headaches, I've done the tests, etc, my brain is fine... except for the fact it is trying to force my eye out of its socket!
Any info would be greatly appreciated.
Thanks,
Cendie
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brain_cramps
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Re: Is this cluster???
« Reply #1 on: Jul 19th, 2003, 10:46am » |
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Cendie:
Sorry you're getting hit like this.
on Jul 19th, 2003, 10:35am, Cendie wrote:| I'm literally banging my head against the wall and my fists against my head. I'm having far too many fantasies about plunging sharp objects into my left eye. My eye hurts, my forehead hurts, my nose hurts, my upper jaw hurts, I can't take it anymore. |
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So far, its sounds SO familiar.
on Jul 19th, 2003, 10:35am, Cendie wrote:| I'm the OTC queen, but before the stuff has had a chance to kick in, the intensity is gone. |
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Just a couple of questions:
- How long do they generally last?
- How frequent are the headaches within a cycle?
- Do they consistently come at the same time of day?
- Do they wake you up out of a sound sleep?
Take the "Cluster Quiz" on the left and let us know how you do.
PFDAN,
grant
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cathy
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Re: Is this cluster???
« Reply #2 on: Jul 19th, 2003, 10:51am » |
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Hi and welcome, yep sounds like it to me, but you should get a professional diagnosis. Print off as much info as possible and take it to your GP.
Keep us informed...wishing you PF times.
Cathy 
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Cendie
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Re: Is this cluster???
« Reply #3 on: Jul 19th, 2003, 11:53am » |
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I don't know if they hit at the same time, 'til yesterday I just figured it was sinus and hadn't been keeping ye ole "headache journal". I have been woken up a few times, I know it usually hits in the morning, mid afternoon, and before I go to bed.
They don't last long, usually by the time I calm down from freaking out, and crying it's over, it's probably about 30 minutes, maybe less.
I know that OTC's don't touch this thing, I've been sprinkling OTC's on my cornflakes (j/k) I'm taking 4 Excedrine every few hours.. it's not touching it.
I get this psycho pain at least twice a day, I hadn't counted before, I've had 2 today, it's 20:00 here,
GMT -2.
Thanks for all the info and support =)
Cendie
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Mark C
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Re: Is this cluster???
« Reply #4 on: Jul 19th, 2003, 12:21pm » |
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Welcome to the nuthouse Cendie, grab an oar and start rowing!
How about a few links to get you started....here is a Cluster Quiz to aid your plight...here is a good comparison table, and here is a good ole HA diary.
Never quit, never quit!
PFDAN's
Mark
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Jayne
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Re: Is this cluster???
« Reply #5 on: Jul 19th, 2003, 12:58pm » |
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First.....Find a good doctor who understands about Clusterheadachesl. Ask him if you would be ok to take verapamil (which is the drug of choice here) you have to take this everyday,,,,,it is a preventative drug and it should help you a lot as it has many of us.
Ask him about oxygen to abort your attacks and Imitrex injections as well.
Keep us informed. We understand your pain
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Jimi
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Re: Is this cluster???
« Reply #6 on: Jul 19th, 2003, 4:30pm » |
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Since you know that Excedrine is not touching it, you need to quit taking them. They can cause rebound headaches as well. Get to a neuro and if he agrees, tell him that you want imitrix and oxygen. Good luck.
Hi Brit . You're looking good these days 
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smfaison
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Re: Is this cluster???
« Reply #7 on: Jul 19th, 2003, 6:24pm » |
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Hi Cendie,
Too bad about the CH. I have had them all of my life. I am now 47. I used to get them in late summer in even years. Then, inexplicably, I skipped 2000. But I got them in 01, and am now in a cycle. I used to take 40 mg of Prednisone and 4 Sansert 2 mg tablets a day to try and control them. If all else failed, I had the Imitrex shot, which was hugely successful for me. But now, Sansert is off the market in the U.S. So my new neuro started me on Depakote. I take 1000 mg a day. I also take Verapamil 180 mg twice a day. I was taking the Verapamil anyway for my BP. I was also taking 40 mg of Prednisone, but I was getting hit with 1-2 CH per day. Then my neuro put me on Bellaspas, which is ergotamine and phenobarbitol and my headaches have all but stopped. I had 1 horrible one two weeks ago today after mowing the yard in the heat of the day. But I will be completely off the Prednisone by Monday and the CH's have stayed away. Ask your doc about this. It does seem from what I've read here from everyone, that the treatments are different as far as what works. Also, since I started on the Bellaspas, my neuro says I can't do the Imitrex anymore. He gave me Stadol, which is a nasal spray, but I haven't had to use it yet. Hope this helps
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Charlie
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Re: Is this cluster???
« Reply #8 on: Jul 20th, 2003, 10:56pm » |
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I'm pretty sure you have clusters from your description. I also think you should go to a neurologist for help. It does exist. Try to make sure he'll consider CH as a diagnosis. MDs hate to do it for several reasons, one being that it's frustrating for them as well.
Neurological exams are painless, strange and incredibly boring after a time. Good luck and you're welcome to stick around
Charlie
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Cendie
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Re: Is this cluster???
« Reply #9 on: Jul 21st, 2003, 3:16am » |
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Thank you all for the wonderful information you've given me. Thanks for suggesting I stop taking Excedrine if it's not working... I take A LOT of OTCs and have to switch around to keep them somewhat effective. I've never taken so many Excedrine (because of the aspirin) and it's always been relatively helpful for me, I don't want to ruin that.
I'm in Athens, Greece atm, and my experience with doctors here has been very negative, (worse than back home in the States even) they shot me with Apotel (600mg tylenol... ROFL) prescribed me Imigram tablets after I told them *triptans didn't work for me (for migraine), and narcotics are very, very, very hard to get here, the nurse said they didn't even have demerol here.
I've been thru the headache ratrace with docs, I can't do it again, especially in a country whose language is still very foreign to me. My boyfriend's father brought me Maxalt sol. tabs the other day, and I did experience some relief with them. *Triptans are available at the pharmacy to anyone who can afford them. I picked up some Imitrex nasal spray, and some more Maxalt, which was successful twice yesterday when used correctly, as soon as my eye started tingling.. I didn't get to the psycho place yesterday =))
I've decided through information provided here that I probably do have cluster headaches, I'm very lucky in the respect I have had 3 years between each episode (97,00,03). I've accepted this is probably going to last another 2 weeks, and my goal is to make it through this alive, and I hope not to see them again for another 3 years.
In 2000 my USA doc (GP, who had been treating my migraines for 4 years) put me on beta-blockers for a month and kept me pretty doped up most of the time, I did experience relief with Zomig during that episode (which finally convinced him that it was indeed migraine... silly doctors), and as soon as this thing hit, I knew it was the same beast. I am somewhat afraid of not having narcotics available this go around.
Thank you all for the support and wonderful information provided in this site, it's provided me a lot of answers.
Cendie
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Edna
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Re: Is this cluster???
« Reply #10 on: Jul 21st, 2003, 4:57am » |
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Hi Cendie,
Glad you found this place if it is indeed clusters you suffer from. Hope all your reading here brings you help with your treatment.
Other than what I've read that's already been told to you, I can only add that I would think you should stop any OTC that does not work. Believe me, been there, done that...they don't help for clusters. I know, lived that way for years. Get yourself to a doc that can provide a type of treatment suited for you.
And also, it might not be so bad without being able to get your hands on narcotics........they don't really work anyway.
Good luck and hope the pain ends soon.......as it will. And then count yourself lucky that you do end your cycle, unlike the many here that live it day in and day out.
After that, stick around here, you're quite welcome to remain with us.
Keep us posted,
EDNA
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goaway
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Re: Is this cluster???
« Reply #11 on: Aug 9th, 2003, 10:44am » |
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Cendie-
I just read all the replies. Just wondering.....
did you ever take the Cluster Quiz on this site? I believe others mentioned it as well. If yes, how did you do? Are you a CH like the rest of us?
Sorry you're having the pain.
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Hound_Dogg
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Cendie...one thing that's almost a definite amongst Cluster Sufferers is the Nostril (usually on the side of the pain) being completely "clogged" during an attack. Not to sound too disgusting...but it feels like your one nostril is gonna explode. Also the one eye gets red and droops.
oh yeah...and the pain is unbelievably horrible. If you add these symptoms...it definitely sounds like a cluster to me. But see your doc.
Jim
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forgetfulnot
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Just something to think about,
Almost all patients with chronic or episodic paroxysmal hemicrania have their headaches eliminated by indomethacin, which for CPH generally has to be taken for years. Sometimes large doses (200 mg per day) are needed to suppress the attacks. Indomethacin, like other non-steroidal anti-inflammatory drugs (NSAIDS) can produce intolerable dyspepsia, which may or may not be alleviated by antacids, such as cimetidine, and it can cause perforated or bleeding stomach or duodenal ulcers. When indomethacin is not tolerated (or effective) other drugs should be tried. One case report (Warner et al., 1994) stated that a patient with CPH unresponsive to indomethacin had her headaches suppressed by acetazolamide (Diamox) in a dosage of 250 mg three times daily. More recently, Mathew et al. (2000) reported a woman with CPH who had to discontinue indomethacin for intolerable gastric symptoms due to multiple ulcers. She was then treated with celecoxib (Celebrex), a drug in a new class of NSAIDs which decrease prostaglandin synthesis by inhibiting the enzyme cyclo-oxygenase-2 (COX-2) without affecting cyclo-oxygenase-1, as does indomethacin and the older NSAIDs such as aspirin, ibuprofen, etc. On a dose of 200 mg twice daily, her headache attacks remitted within 3 days and remained absent for the 3-month follow up--and without gastric symptoms.
Check out CPH couldn't hurt 
Lee
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| « Last Edit: Aug 9th, 2003, 3:24pm by forgetful » |
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Gofishgriff
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Re: Is this cluster???
« Reply #14 on: Aug 9th, 2003, 3:53pm » |
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Hi Cendie,
Welcome aboard, sorry you had to find us. 
I've been to Athens a couple of times and loved the place. Are you there permanently? From your post, it sounds like your from the states.
Cheapest taxi fares in the world are in Athens. They will take you miles for a couple of bucks. Try that here in Orlando!
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