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Topic: Hello clusterheads (Read 315 times) |
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brian trudeau
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his arms are around me and his tounge in my eye
 
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Hello clusterheads
« on: Nov 9th, 2006, 9:50pm » |
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Hello, My name is Brian I am a 34 yr old male who has been having a bad time with the cycles of my clusters. I started getting culster headaches about 15 years ago. At first I thought they must be migranes but could not believe the pain. Others with migranes would say they would lay down in a dark room and I used to ask "How can you lie down, my god" Being young and without health insurance at the time I dealt with it nightly awakening me from a sound sleep with that ice pick behind my left eye. Then they were gone, I was happy again, then and since then they have arrived 2 times a year usually around daylight savings time changes or season change and I am stuck in agony once again for about 3-4 weeks. It seems with age that each year has gotten worse or maybe its myself not being able to take it anymore. Now in the last 3 years and with health insurance I have been through so many test inculding MRI's Cat scans, EMG, and still having my doctors say they were migranes, stress headaches, sinus headaches. blah blah I even told them all the symptons I was having red eye drooping tears and left side runny nose and the god awful pain. I would explain to people I would rather have someone come in nightly kick me in the nuts and then break my fingers than go through these hour long tortures from hell. The first time my wife saw me with one she wanted to take me to the ER in fear I was for sure having a stroke. Now at 34 my left eye seems to be dropped even when not in a cycle there are folds where I clinch my face making permanent wrinkles in time,. I printed out what I could find and went to yet another small town doctor fresh out of med school. Thank God he actually said the word CLUSTER! I went off all other meds at the time and asked for just a script of o2. WOW first time in 14 years something has ever helped. Problem I find with the o2 is that it works good if you can catch it at the begining and since mine are usually when I am sound asleep It seems not so the miracle it seemed that first time using it. Even catching them at first now seems to almost to put out a delay effect. Letting you know Ill be back and even stronger with that heavy shadow almost.
Been to your site for a couple of years now and have to say thanks! Good to know I wasnt loosing my mind or that I am not alone. Real good to know it drives us crazy when people say dumb things they dont undestand to us like " I have migranes too, or I like tylenol when i get a headache" -Yeah that would be nice, and I should try that becomes my usual response. Nobody understanding what we are talking about. Thanks again and will post again soon.
Brian Trudeau
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...but then you make me crawl..and I cant be holding on to what you got...when all you got is hurt...
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thebbz
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Ow,Ow,Ow
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Re: Hello clusterheads
« Reply #1 on: Nov 9th, 2006, 9:57pm » |
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Welcome Brian,
You will have better luck with the 02 using a clustermasx. clustermasx.com
Melatonin will possibly help you get through the night hits. Good luck with the episode. PF wishes to ya.
jb
I sleep with my e-tank...oh and my wife too
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It wasn't me I didn't do it
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brian trudeau
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Re: Hello clusterheads
« Reply #3 on: Nov 9th, 2006, 10:37pm » |
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Thanks again and been on the site all night. So much good information. And good to have people to talk to about these things in which we can only truly understand, like me trying to go to sleep right now since I know what will be comming.
Brian
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...but then you make me crawl..and I cant be holding on to what you got...when all you got is hurt...
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E-Double
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Re: Hello clusterheads
« Reply #4 on: Nov 10th, 2006, 8:45am » |
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Welcome aboard brother!
Nice sig 
So appropeau 
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| « Last Edit: Nov 10th, 2006, 8:46am by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Bob_Johnson
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Re: Hello clusterheads
« Reply #5 on: Nov 11th, 2006, 11:56am » |
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Unfortunately, you are not alone:
Headache. 2000 Oct;40(9):730-5.
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.
Klapper JA, Klapper A, Voss T.
Colorado Neurology and Headache Center, Denver 80218, USA.
OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.
PMID: 11091291
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Bob Johnson
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brian trudeau
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his arms are around me and his tounge in my eye
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Re: Hello clusterheads
« Reply #6 on: Nov 13th, 2006, 3:48pm » |
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Hello everyone,
I Just got back from my doc today after a hard weekend of clusters and he is now trying me on Verapamil 40MG (2xs daily), also Prednisone 60mg a day also gave a script for Toradol 10mg for any lingering shadows that I may have. Said to pick up a bottle of Melatonin to try before bed as well.
Good to see he suggested all of these without me metioning any of these meds. He has me going to a head and pain neurological center on Monday and I am hoping that will help as well. Has anybody had luck with any of the above listed treatments also any luck with going to a speciality clinic. Thanks again for any responses and kind of bummed I am back on meds but the pain is not worth not trying them. Anything specific I should let the clinic know or tell them? Funny they asked me what my pain level was at this weekend and i said a heavy 9 if not a 10 they said there chart only goes to 5 and I laughed and said I will keep it at 9 then. Wishing all PFD's and send some my way,
Thanks again,
Brian
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...but then you make me crawl..and I cant be holding on to what you got...when all you got is hurt...
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brian trudeau
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his arms are around me and his tounge in my eye
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Re: Hello clusterheads
« Reply #7 on: Nov 13th, 2006, 4:35pm » |
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After reading around the site after posting the last message (still havent taken anything but o2 this cycle) I wanted to know what people thought about my Doc's choices he perscribed today:
Prednisone 10mg tab 6 x's daily for 5 days only (no tapering off either and I even asked, since my son uses pred for his asthma occ. and we always tappered his dosage) is kind of scaring me.
Verapmil 40mg tab 1 x twice daily
Toradal for pain (im sure it wont work anyways)
Suggestion of Meatonin but didnt say how much to take
any suggestions would be great
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...but then you make me crawl..and I cant be holding on to what you got...when all you got is hurt...
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kcopelin
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good grief
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Re: Hello clusterheads
« Reply #8 on: Nov 13th, 2006, 4:36pm » |
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Hi Brian,
Welcome, even though the reason you have to be here sucks. After more than enough times of misdiagnosis and clueless doctors, sounds like you have a good doc-although do they plan on increasing the verap? 80mg a day is pretty low-some are on as high as 960 mg-depends on your blood pressure, ect. Also, I love my clustermasx-have named him Henry  .
Melatonin can really be a God-send, hope it works for you. Did he prescribe any other abortive? Imitrex, Zomig?
Alot of us have the cluster-slide on our cluster side. Like we've had a minor stroke. Lots of lopsided grins around here.
Glad you found us and finally decided to post.
PFDAN y'all,
kathy
added: melatonin-6-12 mg a night, Tried shots of Toradol-did squat, but everyone's different.
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| « Last Edit: Nov 13th, 2006, 4:38pm by kcopelin » |
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brian trudeau
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Re: Hello clusterheads
« Reply #9 on: Nov 13th, 2006, 4:48pm » |
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Tried the zomig and Imitrex didnt seem to help
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...but then you make me crawl..and I cant be holding on to what you got...when all you got is hurt...
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chewy
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Prednisone was a good call but verapamil at 40 mg 2x a day is useless.
The minimum I use is 240 mg 2x a day.
Edited: Just noticed the "No taper"
Find a new Doc.
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| « Last Edit: Nov 13th, 2006, 5:07pm by chewy » |
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Sandy_C
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Re: Hello clusterheads
« Reply #11 on: Nov 13th, 2006, 5:08pm » |
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Hi Brian.
I'm sorry you have to be here, but I'm glad you found this site. The information you gain here is awesome - it has saved many lives.
I cannot speak personally to the medications your doc has prescribed for you because I learned last cycle, that I cannot take the meds. I'm episodic, with thankfully, 18 to 24 months between cycles - I'm one of the very fortunate ones.
I would recommend you read the Kudzu thread on the medications board. I've used it with mixed success, but many have had great success with it. Also 02, but make sure you have the correct mask and can crank it up to at least 15. Melatonin has been a Godsend to many, me included. I take 9mg every night about 30 minutes before bed. For me, it took a week before I really began to see a help in the hits. It takes quite a while to get in to your system before it will work, but it does work for many.
Simple abortives, ice packs (keep a bag of frozen peas in the fridge - it molds nicely to wherever you need to place it - please - never eat them later ), ice water, coffee, and above all Red Bull (or any other brand with high caffeine and taurine). Chug, do not sip, at the very first sign of a hit, or to get rid of the shadows.
Again, welcome.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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kcopelin
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Re: Hello clusterheads
« Reply #12 on: Nov 13th, 2006, 5:54pm » |
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Probably should really ask about the no taper thing. You shouldn't just stop pred-tapers are the norm to give the preventative (verap) a chance to kick in, and 80 mg of verap is really low.
kathy
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RichardN
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Re: Hello clusterheads
« Reply #13 on: Nov 14th, 2006, 12:15am » |
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Hi Brian
I can't speak for the Prednisone or Toradol (haven't tried), but there are plenty here who can give you their views on those drugs.
Verapamil worked for me in about 3 weeks . . . . had my first PF day (in a VERY long time) when I hit 240 mg. (had three attacks that night, but had the 02 to kill them . .. . but it was a GREAT day). I got to 360 mg . . . many here take much more and in combination with lithium and other meds. Verapamil can lower your blood pressure, so should be monitored . . . and can cause constipation for many (did me), easily handled by diet or stool softeners.
Be Safe, PFDFANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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