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Not yet diagnosed (Read 1130 times)
Mike Bernardo
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Chesterfield, NJ
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Not yet diagnosed
Mar 4th, 2010 at 12:09pm
 
Hello, All.
I will bullet some of my background so as not to write a book here. I am 12 years diagnosed with Celiac Disease, have had multiple neurologic issues (undiagnosed) and at one point was told I may have MS (recently told I don't), have had 3 concussions, have never been a "headache" person, until a few years ago (I'm 39 now), and have been going through the last 8 or 9 weeks of the worst headaches ever. I have had "episodes" of headaches in the past, lasting a few weeks or so, but never like this. I have a general headache all day, then gets severe in the evening, and I wake up 95% of the time during the night, between 1 and 3 AM with splitting pains. I wake up with a headache that subsides in the early to late morning. I have a headache specialist appt at the end of March, but am suffering in the meantime. Nothing helps; aspirin, excedrin migraine, tylenol, Advil, Clonazepam, nothing. Oh, not true, the one thing that alleviates the pain temporarily is intense exercise. I'm a cyclist, and when I'm cycling at full throttle, with my heartrate between 148 and 170, I have no head pain.
So, I thought I'd say hello and maybe update you with a diagnosis in a few weeks. I don't "hope" I have CH, but I hope I find out what it is so I can begin to treat it.
Mike
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Re: Not yet diagnosed
Reply #1 - Mar 4th, 2010 at 12:23pm
 
Mike,

Please take the cluster quiz over to the left there
<<<<<< 4th link down. 

It sounds like some of your symptoms are CH like.  Good news is that CH isn't life threatening.  However, some other conditions can be, and the pain can mimick CH. 

Others will be along with further information, but knowing more about your history and the nature of the pain will help us help you better.
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"The goal of life living in agreement with Nature."  ~Zeno
peggflick ma_2_2  
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bejeeber
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Re: Not yet diagnosed
Reply #2 - Mar 4th, 2010 at 1:06pm
 
Hey Mike,

Nice how it is standard procedure for headache specialists to make patients in critical or what verges upon critical conditon wait at least weeks for an appointment, isn't it? They could leave one emergency slot open per week, or fit us in somehow, but I guess they can't be bothered.

Since vigorous exercise helps you, I'm going to wildly conjecture and wonder aloud whether oxygen therapy may end up being something that'll work for you as it does for us officially diagnosed CH-ers? There's an oxygen info link with info to the left of this page if you're curious.

Where in yer noggin is your pain centered BTW?

.

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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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Mike Bernardo
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Re: Not yet diagnosed
Reply #3 - Mar 4th, 2010 at 1:50pm
 
Thanks, both, for the quick responses. The pain is over the right side of my head. Now that I've been paying attention for the last few weeks since one doctor suggested migraines (which I don't think it is), I noticed that my sinuses get "clogged" or "stuffed", my eye twitches and sometimes tears, and within an hour, I have a massive pain that lasts seconds to minutes, and may repeat several times throughout the night (rarely does it happen in the day). I would say my pain generally starts around 6pm or so, and ends by the early to mid AM. It's not a pounding pain, like a headache you get with the flu, it literally feels like my head is cracking open on the top right. It has nearly knocked me off my feet several times. The worst is the shock of waking up with in at 1, 2, or 3 in the morning. As fast as I get it that's how fast it goes away. Also, I often feel exhausted after the pain subsides, but that's probably just from the stress of the severity and duration of the pain.
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bejeeber
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Re: Not yet diagnosed
Reply #4 - Mar 4th, 2010 at 2:13pm
 
Not attempting a diagnosis here, but pain on one side, eye tearing, waking up in wee hours of the morning, those symptoms are all quite familiar.

I  too have aborted attacks with a vigorous bike ride BTW (for me it's on a heavy bike, fat under infalated tires, up a hill, and I get winded quick!)  Tongue

FYI - O2 can be procured from welding supply places without a prescription if you get interested in it before your appointment with the criminally negligent "let's make 'em wait a LONG time!" headache specialist.



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« Last Edit: Mar 4th, 2010 at 4:12pm by bejeeber »  

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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Bob Johnson
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Re: Not yet diagnosed
Reply #5 - Mar 4th, 2010 at 3:31pm
 
Patience is a hard thing to encourage when you are in pain but:  With your medical history plus the fact that there are dozens of types of headache (including some disorders which mask as Cluster), it's excellent that you have a specialist coming into the picture. A good diagnosis is critical....
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« Last Edit: Mar 4th, 2010 at 3:50pm by Bob Johnson »  

Bob Johnson
 
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Re: Not yet diagnosed
Reply #6 - Mar 4th, 2010 at 9:11pm
 
Pain lasting "seconds to minutes" screams of NOT CH.

As Bob said, it's good you do have a specialist coming into the case, and I do hope you find relief.  Seriously.

As I indicated, the quiz to the left is pretty good to help point your way and help you form a basis for what you need to think about when getting a good diagnosis.

Please use it as a tool to get yourself on track to knowledge.

Correct diagnosis is key to relief.
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"The goal of life living in agreement with Nature."  ~Zeno
peggflick ma_2_2  
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Mike Bernardo
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Chesterfield, NJ
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Re: Not yet diagnosed
Reply #7 - Mar 5th, 2010 at 10:19am
 
Hi, thanks for the follow up. when I said "seconds to minutes" I meant the crazy intense pain; after that subsides, there is that constant pain left over, but it's like a blast of pain that leaves behind a "nasty headache" after.
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Skyhawk5
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Re: Not yet diagnosed
Reply #8 - Mar 5th, 2010 at 4:11pm
 
Welcome to CH.com,

You may want to check out 'Chronic paroxysmal hemicrania'. Similar to CH but shorter attacks.

Good Luck, Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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