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Topic: Finially it makes sense (Read 403 times) |
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Chicharitta
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Finially it makes sense
« on: May 3rd, 2005, 2:33am » |
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Hi everyone, My name is Jess and heres whats going on with me. About 3 years ago I started having these"head things" as my co workers have called it where one minute I would be fine the next I would be on the floor shanking with this horrible pain in my head. These resulted in a few trips to the ER, one of which landed me in the hospital for 4 days because the Doc's were convinced I was having some sort of Seizures but couldnt find one test to back it up. All catscans, blodwork. etc. kept comming back negative. So finially they told me go home see the family doc and get her to send you tou a neuroligist. So I do that but the good ol family doc says no need for a Neurologist I know what you have its Migraines. So Im like ok good I have a diagnosis and I can move on with life. She gives me Fioricet and sends me on my way. As time goes on I realize my headaches are comming on in spells I can go for months and month perfectly fine then all of a sudden im hit with days and days of pain. A call to the doctor yields a here take more drugs! Well I just moved and hadnt yet found a new doctor when 4 days ago (friday) I wake up with one of my "head things" call out of work. Take my fioricet and it doesnt work Im like ohhh boy here we go. So I go to the ER get yelled at for taking up their time and get more drugs. Spend all weekend feeling like my left eyeball is going to shoot out of my face at any time and kill anyone in its path. Finially this morining Im able to function somewhat through the haze of the drugs. After spending 3 hours on the phone calling all the local doctors the best I can do is an appointment on the 17th. Somewhere after that my mom calls saying she saw something about migraines on tv i should go online and check it out. (thanks mom for the help) So somewhere submerged in all this headache info I find a small paragraph about these Clusterheadaches and Im like OMG I could be the poster child for this! From the pain around 1 eye the nasal congestion, the watery eye. So i give up the migraine hunt and switch to rescearching these clusterheadaches that untill 5 minutes ago I never knew existed and thats how I ended up here. Over the next two weeks I plan to dig up as much info as I can so I can enlighten the doctor when I finially get to see her and just maybe actually get a proper diagnosis. But at the same time Im scared to death because so far it doesnt look too good in terms of actually finding a succesful treatment for my so called "head things"
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John_Booth
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Re: Finially it makes sense
« Reply #1 on: May 3rd, 2005, 6:39am » |
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Welcome to the club, my friend. Sounds like you are also a clusterhead, and you have my sympathy. First, .. get an accurate diagnosis. There are tons of info here re: CH, .. even a letter you can give to close friends/family/doctor explaining what you deal with. I mentioned my CH to a VA psychiatrist who did not know what I was talking about, .... so don't be biased and reject everything BUT CH, but find someone who is professionally knowledgeable re: Cephalgia (head pain), .... INCLUDING CH.
CH is more rare than Migraine. Lately, there are a good number of effective treatments, ... preventive, prophylactic, and otherwise. You have a good chance of getting control if you find a Doc who knows what they are doing. Check out the oxygen info, medical info, and cluster traits in particular. You will find hope.
Sorry you are one of us, ... but glad you are here.
jb
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E-Double
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Re: Finially it makes sense
« Reply #2 on: May 3rd, 2005, 7:55am » |
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First of all get yourself a proper diagnosis......
from there proper treatment.
Many of us have gone decades without and have "suffered" thinking we were going to die or that we were going mad........
Take the "cluster quiz" located on the hyperlink to the left of the message board.
There are a few different types of HA that may present themselves similar to Cluster yet are different in duration and responsiveness to medications which is another reason you will NEED a proper diagnosis.
Arm yourself with information and try hardest to find either a cluster knowledgable doctor (a rare commodity) or a doctor willing to be educated. Research Research Research!!!!
If so you will need to present them with information that you should know like the back of your hand as well as them... if not better because it is your body!
Here is a greta resource with what is deemed appropriate treatment for Clusterheads...
http://www.brightok.net/~mnjday/chtherapy.pdf
You will also need to demand Oxygen (if diagnosed)...another great resource to know...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Read Read Read!
I hope this is not what you have but if it is then you have found a home for not only support but education!
Hang in there, stay as positive as you can and just live life!!!
Best,
Eric
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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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kissmyglass
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Re: Finially it makes sense
« Reply #3 on: May 3rd, 2005, 4:50pm » |
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Hi Jess,
I see you are from CT., me too. I'm in Ansonia and I have an outstanding cluster neurologist. I'll give you his # if you are interested. I guarantee he is worth the ride from where you are. A good neuro is key to battling this nightmare.
Hang tough,
Kev
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Margi
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Re: Finially it makes sense
« Reply #4 on: May 3rd, 2005, 5:18pm » |
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on May 3rd, 2005, 7:55am, E-Double wrote:First of all get yourself a proper diagnosis......
from there proper treatment.
Take the "cluster quiz" located on the hyperlink to the left of the message board.
Read Read Read!
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Excellent advice, Eric - maybe I'm interpreting the original post incorrectly, but it doesn't sound like cluster to me.
Take the quiz, Chicharitta and then get a diagnosis from a cluster knowledgeable neuro - there is a list of them over at www.clusterheadaches.org, first pull down menu above the map.
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E-Double
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Re: Finially it makes sense
« Reply #5 on: May 3rd, 2005, 5:51pm » |
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In CT??????
Contact NECH.....New England Center for Headache in Stamford
Good luck!!!
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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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TxBasslady
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Re: Finially it makes sense
« Reply #6 on: May 4th, 2005, 12:13am » |
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on May 3rd, 2005, 2:33am, Chicharitta wrote:| But at the same time Im scared to death because so far it doesnt look too good in terms of actually finding a succesful treatment for my so called "head things" |
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There are several ways to treat CH.....It's the cure that's the kicker.
Main purpose we are all sittin round here talkin to each other....we're lookin' for the cure. Someday.....surely it will come to pass.
Welcome, Jess.....enjoy your stay...let us know what the doc says.
PF vibes,
Jean
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mynm156
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Re: Finially it makes sense
« Reply #7 on: May 5th, 2005, 1:31pm » |
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No doubt my friend sounds like we have a neww Cluster Head among us.
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Giovanni
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Re: Finially it makes sense
« Reply #8 on: May 5th, 2005, 7:52pm » |
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Really sucks when you have to diagnose yourself and these "educated" medical professionals could not.
Sounds like to me that you have clusters--unfortunately.
A confirmed diagnosis by the neurologist will be the next step.
Oxygen theraphy as an abortive will probably be your best bet for quick relief during an attack. It has to be set up properly to work. Copy the information to your left and take it to the doctor. Keep us informed after your appointment.
John
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javi_spain
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Re: Finially it makes sense
« Reply #9 on: May 20th, 2005, 10:36pm » |
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Hi Jess, welcome to this site, sorry you may have this condition though.
You may want to check that you dont have Chronic Paroxysmal Hemicrania, have a look at this, just in case.
http://headaches.about.com/library/glossary/bl-chronic-parox.htm
I am really sorry that you got yelled at while asking for treatment at ER. People can be damn insensitive.
Remember, you may feel a bit down now, but keep in mind that although there is no cure for this condition (yet) there are many treatements available out there, so keep researching and find the one that works for you.
All the best
Javier
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