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Topic: please help! (Read 683 times) |
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dannyoct16
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please help!
« on: Jan 20th, 2006, 9:37pm » |
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I've been suffering for over ten years now with what i was told was a cluster headache. My last three years have been spent at the Cleveland Clinic with the best doctor telling me I was a classic cluster but...
I went to the American Migraine Center here in Cleveland to a doctor who told me it might not be a cluster.
I get them about three times a week and they are always in my left side. The pain is intense and last about an hour. She thinks it may not be a cluster because I get this huge knot in my left shoulder area near my neck and also a marble size knot in my neck.
DOES ANYONE GET THOSE WHO HAVE CLUSTERS?
My left nostril get congested, my eyes turn blood shot red and the pain is so bad I would never wish that on my worst enemy.
The Cleveland Clinic had me on 360mg of Verapamil 180 am, 180 pm. 15 mg melatonin and zomig when i got them. I have an o2 tank with a clustermax and they put me on topomax (dopomax!) when i was in real bad shape. I even had a DHE pack on for a week and had to self inject for another two weeks.
I had another MRI yesterday since my clinic doctor refused to do one since i was the "classic case".
Im 29, athletic, never smoked, very light social drinker and not sure why I still get them.
The verapamil worked the first year by tapering them off so that i got half as many as i used to but i figured i mine as well live with an extra one a week and stay off the prescriptions.
This new doctor has put me on a muscle relaxer that i take at night called Zanaflex. So far so good, no headaches! (hope i didnt jinx myself)
I know there are alot of educated people in here that suffer or have a loved one that suffers so any insight would be greatly appreciated. Especially about whether they get stiff around the neck and shoulder.
thank you,
dan
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dannyoct16
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Re: please help!
« Reply #1 on: Jan 20th, 2006, 9:43pm » |
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other important info...i never have had more than one in a day and they are never consistent with regards to time. they can happen as soon as i wake up to afternoon to right after as i fall asleep!
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AussieBrian
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Re: please help!
« Reply #2 on: Jan 20th, 2006, 10:01pm » |
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I know all about the knot in the back of my neck and for a long time thought it to be the cause - a pinched nerve or the like. I can help you out that far, at least.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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E-Double
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Re: please help!
« Reply #3 on: Jan 20th, 2006, 11:25pm » |
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Our beloved "cluster-lump"
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Linda_Howell
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Re: please help!
« Reply #4 on: Jan 20th, 2006, 11:51pm » |
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Yep, a lot of us do. Go to the link to the left of where you're reading this "cluster traits"
Danny?
Quote:| I know there are alot of educated people in here that suffer or have a loved one that suffers |
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You have no idea.!!!!  lmao
The people on this site are "THE" most well-informed people on the subject of cluster headaches.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Richr8
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No doubt.
« Reply #5 on: Jan 21st, 2006, 1:07am » |
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A mjor part of the condition although mine reside more toward the base of my neck at the top of my right shoulder b;ade. Horrible knotting.
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pf wishes,
Rich
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MJ
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Re: No doubt.
« Reply #6 on: Jan 21st, 2006, 1:25am » |
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on Jan 21st, 2006, 1:07am, Richr8 wrote:| mine reside more toward the base of my neck at the top of my right shoulder b;ade. Horrible knotting. |
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Ditto
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MJ
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Guiseppi
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Re: please help!
« Reply #7 on: Jan 21st, 2006, 1:52am » |
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I think you're a cluster. I get the knot on the right side of my shoulder, at the base of my neck. I bought one of those heated vibrating neck things that Wear when it gets really bad.
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agonymum
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Re: please help!
« Reply #8 on: Jan 21st, 2006, 2:52am » |
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yes i have the knotting too , on my right shoulder -cluster side .
i always thought it was from using the computer mouse too much .
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Barry_T_Coles
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Re: please help!
« Reply #9 on: Jan 21st, 2006, 5:54am » |
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Hi Dan
Yep get the same thing, bloody annoying and the whole area around it seems to tighten up, all the sinuous in the area creak & groan but then again that could be just me being an old fart.
I use a Mini Tens machine on the area and it gives me a great deal of relief.
Kind Regards
Barry
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godsjoy777
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Re: please help!
« Reply #10 on: Jan 21st, 2006, 7:46am » |
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Yes, Dan.....I also get the lump....sometimes there is one right behind my ear AND on my neck.....yuck......I was prescribed zaneflex too but haven't tried them regularly....hmmm.....
Not everyone is chronic.....You obviously aren't chronic in that you don't get a bunch of them every day of the year....The pain is still terrible and the condition is horrible....Our love and support is here for all types of sufferers.....Thank God for this group of people....Has gotten me through the last few of the 15 years of suffering with these %$$^%$&^%*&&* things!
Blessings,
Karen
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burnt-toast
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Re: please help!
« Reply #11 on: Jan 21st, 2006, 9:49am » |
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You appear to have all the classic CH symptoms - I don't get knot(s) during attacks but as you can see its fairly common. A little more work with your doc./meds. seems to be in order.
If you've had these a few day per week for three years your condition is chronic. It's a difficult battle but others like us are still going strong after much longer time periods. The key if finding something that helps tame this nightmare a little. It will take some work.
The most difficult task I experienced was finding the right meds., dosages and medication schedule (best times to take meds.) that worked. Good records and a headache journal was extremely useful. Things aren't perfect but they are now much more liveable.
Take the information you get from these responses and the site with you on your next visit to the doc. If the doc. doesn't seem willing to work with you there's no harm in looking for another doc. willing to work collaboratively with you.
Best wishes on your journey.
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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dannyoct16
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Re: please help!
« Reply #12 on: Jan 22nd, 2006, 7:05pm » |
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got hit last night about an hour into my sleep. two things i can of that started it. i went to a fundraiser and had two draft beers and also messed up my sleep pattern by three hours. there is no possible way i can go on a superbowl cruise for a week without drinking! i better stock up on the imitrex!
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Kris_in_SJ
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Re: please help!
« Reply #13 on: Jan 22nd, 2006, 7:50pm » |
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I'd never go on a cruise without my Trex.
Take it and have a good time.
Kris
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robertrickun
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Re: please help!
« Reply #14 on: Jan 24th, 2006, 2:44pm » |
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Hello Everyone
My clusters are back-i had forgotten how expensive the imitrex was-anybody find a cheap place to buy this stuff?
robertrickun@sbcglobal.net
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FramCire
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Re: please help!
« Reply #15 on: Jan 24th, 2006, 3:04pm » |
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Have you hit up your doctor for samples? Even Family Practice doctors sometimes get samples of it.
I'm sure you probably have already, but it is worth mentioning.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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maffumatt
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mine is on my jaw, one reason I used to think it was a dental problem.
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Ghost
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Re: please help!
« Reply #17 on: Jan 24th, 2006, 5:17pm » |
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Hey what is a Cleveland anyhow?
Good luck and fight on!!!
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