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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >>  newbee to clusters
        
(Message started by: jodirtydoz on Sep 2nd, 2006, 4:14pm)
Title: newbee to clusters
Post by jodirtydoz on Sep 2nd, 2006, 4:14pm
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
Title: Re:  newbee to clusters
Post by Cathi04 on Sep 2nd, 2006, 8:17pm
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
Title: Re:  newbee to clusters
Post by jodirtydoz on Sep 2nd, 2006, 8:25pm
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
Title: Re:  newbee to clusters
Post by Cathi04 on Sep 2nd, 2006, 8:34pm
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
Title: Re:  newbee to clusters
Post by jodirtydoz on Sep 3rd, 2006, 12:25am
thanks will do
Title: Re:  newbee to clusters
Post by E-Double on Sep 3rd, 2006, 1:01am
I wrote this on your intro in who's who....



Quote:
on Sep 2nd, 2006, 5:16pm, jodirtydoz wrote:ok 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!!!!!
http://www.ninds.nih.gov/disorders/paroxysmal_hemicrania/paroxysmal_hemi crania.htm
Title: Re:  newbee to clusters
Post by jodirtydoz on Sep 3rd, 2006, 1:14am
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
Title: Re:  newbee to clusters
Post by E-Double on Sep 3rd, 2006, 2:12am
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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