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Topic: newbee to clusters (Read 201 times) |
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jodirtydoz
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newbee to clusters
« on: Sep 2nd, 2006, 4:14pm » |
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hello to all and now i do know what you going threw im new to this it started last saterday 1 week ago been getting steady headace allday long since last sat having 15 to 35 attacks a day attacks as i call them you know pain in ear jaw eye nose throut {must excuse my spelling not too good lol} there lasting any were from 5 min to 2 hrs doing the walking pacing back and forth havent found any relief yet doc has tried a few diff meds and imatrex spray nothing at this time helping having for week now staright seems to be getting worse and longer on attacks , for now just dealing with it waiting for oppt with specialist in 2 week cosest time i could get !! glad to know but sorry there more out there than just me been getting i bit nervious because it new to me not shure if clusters is what im having but the doc seam to think so guess we shall see !! mine do move from side to side durring attacks and also will stay on 1 side or outher mostly on left side of face now started on right in beginning 7 days ago !! hope to have them over soon but it dont feel like it i usual get 1 or 2 time a day relief with no attacks these time last about 1 hr then the attacks start again get about 1 evry 15 min of no pain they last 5 min to 2 hrs then nothing for 15 min to 30 min then get next 1 this has been going on all day and all night been sleeping about 2 hrs a day funney thing not even tired well that enough about my prob im shure the rest of ya got bigger probs than me !! always thought i was healthy untill this!! thank you for this site whoever started it it is helping me to understand this privledge i have been given !! sorry my sence of humor a bit harsh
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Cathi04
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Re: newbee to clusters
« Reply #1 on: Sep 2nd, 2006, 8:17pm » |
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Joe, Sorry you need this place, but very glad you found it! Welcome, now pull up a chair and start reading.....see those buttons on your left side of the screen? First thing I'd do is read the Cluster Traits, then I'd take the cluster Quiz...please post again when you've done that let us know the results.
There is a TON of help here for you, so stay online and ask questions. The more you know about the beast, the easier it is to deal.
There's plenty of help and support here for you, and a lot of very experienced and good people.
Again, welcome, and I wish you
PF(that's pain-free)
Cathi
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Life is not measured by the number of breaths we take but by the moments that take our breath away.
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jodirtydoz
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Re: newbee to clusters
« Reply #2 on: Sep 2nd, 2006, 8:25pm » |
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un fort i did the test lol deff poss on clusters but like i said still waiting on specialist, weird how they come on so fast then hit with furry then be gone for 1 to 2 min hit again !! but im learning fast aboutthem i have been surffing this website for about 5 days now sorry so long to post but still not to computer happy at moment!! waiting for head to stop lol end in sight i hope soon lol
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Cathi04
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Re: newbee to clusters
« Reply #3 on: Sep 2nd, 2006, 8:34pm » |
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Joe, Good typing is not required here..we'll let ya know if we dont understand something.....and noone can type while getting hit, so don't worry!
Do me a favor, grab a bag of frozen peas from the freezer. Place it on the back of your neck.Peas aren't absolutely required..it's just they fit the space nicely and mold to your neck....frozen anything you've got will work. Lots of CHer's swear by 02. You can read about that in the Oxygen thread on the right. This will be a good thing to ask for when you see the Neuro.
Hang tight, Jo, it looks like you are joinig the ranks of the strongest people I know!
Cathi
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Life is not measured by the number of breaths we take but by the moments that take our breath away.
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jodirtydoz
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Re: newbee to clusters
« Reply #4 on: Sep 3rd, 2006, 12:25am » |
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thanks will do
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E-Double
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Re: newbee to clusters
« Reply #5 on: Sep 3rd, 2006, 1:01am » |
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I wrote this on your intro in who's who....
Quote:on Sep 2nd, 2006, 5:16pm, jodirtydoz wrote k total new to this started just 7 days ago having fun filled days of pain lol 15 to 20 attacks a day right now but im shure will get threw it i desirve it all lol good to meet ya all and see im not only 1 out there 42 year young and still going hehe havent fig out how to insert my pic so your all lucky so far
Sorry you are in pain!!!
A quick question..........
Has your doctor or you in your own research considered Paroxysmal Hemicrania.
It is a cousin of CH, however attacks come in higher frequency yet are shorter in duration.
They can be episodic (EPH) or Chronic (CPH) just like Clusters.
They are however near 100% responsive to indomethacin.
I ask this because if it is PH then relief is truly around the corner for you and fast!!!!!
[url]http://www.ninds.nih.gov/disorders/paroxysmal_hemicrania/paroxysmal_hemi crania.htm[/url] |
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| « Last Edit: Sep 3rd, 2006, 1:02am 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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jodirtydoz
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Re: newbee to clusters
« Reply #6 on: Sep 3rd, 2006, 1:14am » |
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when i go to nro in 2 weeks i'll mention it but my attacks art quick they been lasting any were from 15 to 90 min long its poss that it can be but i get them from 800 in morn till about 1 or 2 in after noon then short repreve untill 4 or 5 in afternoon then they start again i'll get up untill 4 in morn then repreve till 6 or 8 in morn when it starts all over again to day attacks were alot less prob only 7 so far but still not morning yet in eather case ive been doing a log of times duration intensity body temp and what places on my head they are hitting it was moving to diff areas in the beginning of the week from rtside at1 attack then left side next attack or both eyes so on and so on , now to day 85% of the attacks were on left side only mostly eye nose and ear jaw a few times but ive notices not hitting teeth as miuch , but will ask noro when i see her ty
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E-Double
CH.com Alumnus
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Re: newbee to clusters
« Reply #7 on: Sep 3rd, 2006, 2:12am » |
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Gotcha!
Ya know it can't hurt to ask for a trial of indo regardless.
there are several TAC's that present similar to CH but are responsive to different meds.
Pain sucks! Period!!!
I wish you the best and welcome!
E
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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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