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Back after FIVE pain free years WITH QUESTIONS (Read 1022 times)
stinkeesmom
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Back after FIVE pain free years WITH QUESTIONS
Aug 15th, 2010 at 5:08pm
 
he everybody, in the spring of 05 i started with a sudden sharp pain in my left eye like a claw in my eye trying to dig it out, after first visting a 100 eye doctors thinking there was something wrong with my eye, and no sucesss with my primary care doctor or with the first neurologist i saw, i finally made my way to a second neurologist who prescribed a week of steroids, the cycle and pain stopped completely after the first or second dose(but this was after 7 or 8 straight months of pain) and ironically in aug of 05, well now 5 years later last friday night the whole thing started again with a shatp pain in my RIGHT EYE instead and watering eye, with tears that felt like acid was pouring out of my eye,spent saturday in the er in case there was a remote possibility that i had injured my eye, they found nothing and gave me nothing for pain, only problem is the neurologist i saw 5 years ago doesnt take the insurance i have now, and is the only neurologist within 40 miles AND i have no car, plus my fear is that the steroids wont work this time and they were the only thing that worked last time.
do u think my current primary care doctor would be willing to prescribe the steroids?
my last question is, in between attacks im never completely pain free, which i guess is uncommon, although its not agonizing there is still a pulling sensation and feeling of having something stuck in my eye, even when im not having a full blown attack, so im basically in pain 24/7 does this mean its not clusters?
like the last time in 05 i was in pain for 7 to 8 months 24/7 even though the pain was very mild at times it never went away completely until the cycle ended with the steroids
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bejeeber
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Re: Back after FIVE pain free years WITH QUESTIONS
Reply #1 - Aug 15th, 2010 at 6:10pm
 
Sorry I can't offer a worthwhile opinion about your diagnosis, but I've been prescribed steroids (prednisone) for CH by a GP before and it certainly is common enough.

You'll find a lot of O2 enthusiasts here because the newer method for administering it tends to be very effective. you might wanna check out that oxygen info link to the left of this page for one of your first reads on this site.

Lately there seems to be more and more attention paid to the natural (although not always entirely legal) methods for combatting CH that have been used by indigenous peoples for a lonnnnng time. Some of our fellow CH'ers are reporting this approach to be more effective than any drug for long term eradication of CH symptoms.

This is the main topic of discussion over at clusterbusters.com, and here's a video talk on the subject: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register



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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Lettucehead
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Re: Back after FIVE pain free years WITH QUESTIONS
Reply #2 - Aug 15th, 2010 at 9:50pm
 
You've got a tough situation here!

Did you get a firm diagnosis the last time this happened?  Your symptoms and treatment sound quite a bit unusual for CH but not impossible.  Have you taken the CH quiz found to the left?  Have you been ruled out for an iritis or other inflammations of the eye?  If that was what was going on it would explain what sounds like primarily eye symptoms and how it was so fully treated by a round of steroids...

Talk to your primary care doc about what's going on - the main issue is that he/she is going to want to be very cautious that giving the steroids isn't going to be just covering up a more significant problem...
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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH
 
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wimsey1
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Re: Back after FIVE pain free years WITH QUESTIONS
Reply #3 - Aug 16th, 2010 at 7:47am
 
You need a firm medical diagnosis. And yes, your GP can be just as educable as an uninformed neuro, particularly if you explain you are having problems with insurance coverage. Go to your appointment armed with info from this site, humbly and persistent in asking for effective preventatives and abortives. A GP might order some tests, but might also be willing to diagnose based upon effective loss of symptoms following a successful intervention. It's really a matter for you and your GP to work out. Good luck, and God bless! lance
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Bob Johnson
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Re: Back after FIVE pain free years WITH QUESTIONS
Reply #4 - Aug 16th, 2010 at 10:53am
 
If your primary care is open to receiving medical literature which we can send then, yes, he can help you.

Print out the PDF file, below, and give to it to him and ask if he would work this way.

Re. non-stop pain,etc. Some folks using Verapamil 100% of the time, even when not in an active period, to handle such background experience.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (144 KB | 27 )

Bob Johnson
 
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stinkeesmom
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Re: Back after FIVE pain free years WITH QUESTIONS
Reply #5 - Aug 16th, 2010 at 5:03pm
 
sorry guys if i didnt clarify
when this happened in 05 the eye doctors insisted that there was nothing wrong with my eye, no iritis or any eye disorder to account for the pain in my left eye
the neurologist said it sounds most like cluster headaches, except that the pain remained 24/7 in some form(sometimes severe, sometimes mild) and lasted for 7 months straight in 2005 and then ive been completely pain free since last friday night when this started in my right eye, the ER doctor said nothing appears to be wrong with my right eye, no infection, no scratch, nothing, and now ive had the pain in my right eye nonstop since friday night, sometimes its excruciating and waters and then it stops but not completely, theres still a razorlike sensation in between the stabbing attacks
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stinkeesmom
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Re: Back after FIVE pain free years WITH QUESTIONS
Reply #6 - Aug 16th, 2010 at 5:08pm
 
forgot to add its been five years since this happened with my left eye, this time its my right eye.   the first time lasted 7 months until the steroids were prescribed, the neurologist called them "atypical cluster headaches" because the pain was 24 hours a day with the exception that sometimes it was aganozing like my eye was being forced out of its socket and other times it was just mildly painful.   eye doctor insisted there was nothing wrong with my eyes.
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stinkeesmom
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Re: Back after FIVE pain free years WITH QUESTIONS
Reply #7 - Aug 16th, 2010 at 5:39pm
 
sorry forgot to add when i said the only thing that worked in 05 was the steroids, i forgot the only other treatment besides the steroids that was tried was narcotics like percocet, demerol, etc and they didnt even touch the pain, they were prescribed by my primary care doc at the time, didnt touch the pain, then the first neurologist wanted to put me on depakote, and the second neurologist put me on steroids
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