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dannyoct16
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please help!
« on: Jan 20th, 2006, 9:34pm »
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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 mayself)
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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nani
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Re: please help!
« Reply #2 on: Jan 20th, 2006, 10:05pm »
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Hi danny, welcome, and sorry you had to find us. I get that lump, too. My neck often has spasms during an attack, also. So do a few others here.  
You've found the best place to be if you have CH. There's tons of info and a lot of support here.  
pain free wishes, nani
 
edited to add: I've rarely had "regular" attacks.
« Last Edit: Jan 20th, 2006, 10:07pm by nani » IP Logged

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Re: please help!
« Reply #3 on: Jan 20th, 2006, 10:16pm »
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on Jan 20th, 2006, 9:34pm, dannyoct16 wrote:
The Cleveland Clinic had me on 360mg of Verapamil  
 
The verapamil worked the first year by tapering them off so that i got half as many as i used to...

 
480mg did a little better for me and 600mg was good for the harder times, I'm not rocking that boat for myself, but I've not had any stiffness, some may I've heard.
 
Glad it's helped you dan
« Last Edit: Jan 20th, 2006, 10:18pm by Kevin_M » IP Logged
alienspacebabe
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Re: please help!
« Reply #4 on: Jan 20th, 2006, 10:18pm »
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I sometimes get neck knots during clusters - happened at the Dallas convention.  You're not alone in that.
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Re: please help!
« Reply #5 on: Jan 20th, 2006, 10:59pm »
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Knot in the neck?  Ohhhh yes, very much so!  Nasty too, they don't like to go away easily...
 
I hate to say it, but it does acutally sound like you have CH's.  My most recent cycle had them coming whenever the heck they wanted to, but mostly at night, and most definately within a couple hours after falling asleep.  Sometimes I could even sleep for 6 hours before the damn things woke me up!  They are definately unpredictable.
 
Dan, you say you have an O2 tank with a Clustermasx, what lpm on the regulator do you use, and also, how long does it take for you to knock out an attack?
 
I'm very sorry you have this pain. Sad
 
take care,
melissa
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Bob P
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Re: please help!
« Reply #6 on: Jan 21st, 2006, 7:55am »
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Yep.  Many clusterheads report the next/shoulder stiffness and pain.  I get it during a cycle.
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Re: please help!
« Reply #7 on: Jan 21st, 2006, 7:59am »
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Sounds like cluster to me.If you were treated at the Cleveland Clinic why did you switch to the Migraine Center?
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Kevin_M
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Re: please help!
« Reply #8 on: Jan 21st, 2006, 8:08am »
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Zanaflex  (tizanidine hydrochloride)
 
active ingredient: tizanidine
 
(nationalmssociety.org)
Tizanidine is a short-acting drug for the management of spasticity. Its peak effectiveness occurs one to two hours after dosing, and is finished between three to six hours after dosing. Therefore, your physician will prescribe a dosing schedule that provides maximal relief during activities and periods of time of greatest importance to you
 
(drugs.com)
What is Zanaflex?  
   Zanaflex is a muscle relaxant. It works by blocking nerve impulses (or pain sensations) that are sent to your brain.  
   Zanaflex is used to treat increased muscle tone associated with spasticity.  
   Zanaflex may also be used for purposes other than those listed in this medication guide.  
 
(rxlist.com)
ZANAFLEX* (tizanidine hydrochloride) is a centrally acting a2-adrenergic agonist.
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dannyoct16
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Re: please help!
« Reply #9 on: Jan 21st, 2006, 11:36am »
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i went to the migraine center because they do alot with botox and needed another opinion since the verap wasnt helping and my doc was arrogant with regards to the meds.
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dannyoct16
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Re: please help!
« Reply #10 on: Jan 21st, 2006, 11:39am »
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melissa...i set my tank at 10 and use it for 10-12 minutes then take a 5 min break and use it again if its intense...o2 doesnt always work for me but i try not using over the counter or prescr meds unless im at work or out because of the side effects.
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Re: please help!
« Reply #11 on: Jan 21st, 2006, 11:48am »
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on Jan 21st, 2006, 11:39am, dannyoct16 wrote:
melissa...i set my tank at 10 and use it for 10-12 minutes then take a 5 min break and use it again if its intense...o2 doesnt always work for me but i try not using over the counter or prescr meds unless im at work or out because of the side effects.

Dan, have you tried using it no more than 20 min. steady?  That just might kill the attack all together.  At least, that is what I needed to do for the really bad ones.  O2 is safe to use for up to 20 min., it is not recommended to go longer than that.  
 
Have you considered trying Kudzu?  I had found that along with taking the Kudzu root (as a preventative), the O2 works much more effectively.
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dannyoct16
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Re: please help!
« Reply #12 on: Jan 21st, 2006, 12:56pm »
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i tried the kudzu for about a week and gave up since they beast was stronger than ever! i think i should have given it some more time...i am going on a superbowl cruise in two weeks and would just wish a week of fun without that s.o.b.!
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thebbz
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Re: please help!
« Reply #13 on: Jan 21st, 2006, 2:19pm »
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Knots in neck here as well. Cool Trapezius too.
jb
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dannyoct16
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Re: please help!
« Reply #14 on: Jan 22nd, 2006, 7:04pm »
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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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