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Topic: Dont know if I've got CH but I'm in pain! (Read 352 times) |
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jag128
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Dont know if I've got CH but I'm in pain!
« on: Aug 29th, 2005, 9:53pm » |
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I'm new here.. first post.. but wanted to share my story and get some feedback from those "in the know".
I've had sinus trouble my whole adult life. I'm male, now 31 yrs old, and have been to ENT doctors more frequently than I'd like to admit. Over the years I noticed that I could predict the weather due to sinus pain, and one of my doctors suggested getting a CT scan. The scan showed that my septum was horribly deviated and I had bone spurs nearly piercing one of my sinuses. I had the surgery (after getting a 2nd opinion) a month ago, and it was relatively painless.. so to speak. I can now breath much clearer through my nose, but unfortunately it appears I can still predict the weather.
Over the past 6 months, my headaches started getting really bad. Debilitatingly bad. I get major sinus pain, starting in the sides of my nose but really concentrated in the corner b/w my eye and nose. That pain is what really prompted my having the septum surgery, but the pain still exists.
Since the surgery, the doctors have said "you're still healing" numerous times and prescribed various pain meds/ anti-inflamitoiries/ decongestants/ antihistimines but the only thing that has worked so far is the narcotic pain meds (which i really dont want to take).
I went to visit a neurologist last week and got the cold shoulder. I felt like she didnt undertsand the pain and told me to take sudafed and call an ENT. She did request an MRI, which I went thru last week and am waiting for results. However, preliminary research on Cluster Headaches sounds like this might be what i'm suffering from all along.
It's hard to say, but my pain is solely on the left side 90% of the time. It is a flash of pain behind the eye, and the focal point is in that corner, almost above the eye but next to the nose. Placing my finger in that corner and pressing hard REALLY helps, but sometimes the pain is really bad and makes me cringe/eyes tear up/ stomach gets nautious. When i'm suffering an attack, the sharp pain usually lasts either a few mins ot a few hrs, though i do have mild discomfort (on a scale, its a 2 out of 10) almost all day long. Also, when i'm suffering people can tell... they tell me i look sick or that i look really tired (my eyes sink in and it's hard to keep them open as wide as they normally are)
I've stopped taking all the prescription pain meds, watched the foods that I eat to avoid alcohol (it's been a trigger recently) and i'm just using advil & sudafed but the pain still exists. It has totally ruined my summer and I'm at witts end with this. Friends and family are supportive but they just dont understand the pain and I feel like they all just want me to quit my whining and get over it. I dont know yet what the triggers are, but weather seems to be the predominant one - - when the pressure drops outside, the head hurts inside.
I'm not looking for a diagnosis, but just wanted to know if other people feel the way I do. Based on some of the stories, it seems like i'm right at home here. My headaches (or eye/nose aches are prob more appropriate) are totally ruining my life and I dont know what to do. I'm still waiting on the MRI results (can those show cluster headaches?) and still working with my ENT to find proper meds but this is just exhausting.
Please let me know i'm not alone. Or dont.. it was actually quite therapudic just typing this out.
Thanks for listening.
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AussieBrian
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Got beer?
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Re: Dont know if I've got CH but I'm in pain!
« Reply #1 on: Aug 29th, 2005, 10:01pm » |
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We'll listen to you, mate, and you can rant along to your heart's desire, but firstly and foremostly take the Cluster Quiz over on the left and let us know the result.
No, you're not alone. You're with friends now.
Kindest regards,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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jag128
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Re: Dont know if I've got CH but I'm in pain!
« Reply #2 on: Aug 29th, 2005, 10:10pm » |
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I took the quiz, and was definitely leaning towards "yes" for clusters. The one thing that really sets me apart though (and i think this is what turned off my neurologist to CH) was #9. About 10% of the time, my headache is on the opposite side (right side) only. Its as if the pain swaps sides, but stays in the same area (behind the eye/nose - just in the new corner). Then when that one goes away, the next one (and so on) are all back on the left side.
I know cluster headaches tend to be only one-side, and most of my pain is in that one Left corner, but for some reason I do get similar pain in the other corner every once and a while. Maybe I have 2 clusters?
(i'm stretching, i know.. but i'm looking for some sort of answer and this is the closest thing i've found so far) 
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Kevin_M
CH.com Alumnus
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withered branches grow green again.
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Re: Dont know if I've got CH but I'm in pain!
« Reply #3 on: Aug 29th, 2005, 11:30pm » |
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Of course, no doctor here, but there seems to be something leading me to think, not clusters, just to hope you keep looking for a correct doctor diagnosis. I don't know what the operation accomplished or what it was supposed to do or didn't do.
Quote:I get major sinus pain, starting in the sides of my nose but really concentrated in the corner b/w my eye and nose.
It is a flash of pain behind the eye, and the focal point is in that corner, almost above the eye but next to the nose. Placing my finger in that corner and pressing hard REALLY helps, but sometimes the pain is really bad and makes me cringe/eyes tear up/ stomach gets nautious. When i'm suffering an attack, the sharp pain usually lasts either a few mins ot a few hrs, though i do have mild discomfort (on a scale, its a 2 out of 10) almost all day long. |
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Kevin
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E-Double
CH.com Alumnus
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Are we ourselves?
  
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Re: Dont know if I've got CH but I'm in pain!
« Reply #4 on: Aug 30th, 2005, 11:31am » |
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It is possible.
Also have your doctor shoul do some more research!!!
There are studies on "ping-pong" cluster.
They are always unilateral yet will present on one side one time and then another a different attack.
Some also get the "renegade hit" Predominatly right sided then get whacked on the left. I'm like that.
As far as meds go, I'm hesitant to offer advice when there is no diagnosis. Not all treatments work for everyone and being that you have no meds @ this point nor have you been officially diagnosed, there are a few things that might be able to give you some relief non-medicinally.
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
Some tricks that I used to use and sometimes still do are:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.
Since you took the quiz and you are leaning towards a "YES" that you might have CH.....get a new doctor, read. read read and print the following out:
This is a great resource to know like the back of your hand...print it out and give it to the doc if/when you get properly diagnosed.
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
All in all , pain sucks but this place will offer you tons of support if you need to be here. Kinda saved my life and apparently thousands of others!!!
I hope it is not and though there are certain things that Kev pointed out , ya never know......
There are some different HA types that present similar to CH but differ in duration and responsiveness to medication!
Eric
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| « Last Edit: Aug 30th, 2005, 11:33am 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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yikes-another-one
New Board Old Timer
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Re: Dont know if I've got CH but I'm in pain!
« Reply #5 on: Sep 4th, 2005, 11:05am » |
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Rare but switcing sides happens.
i get a headache every morning at 6:30am.
always left side.
I sometimes get another at 7:15 on the right side.
then I get another at 9am on the left,
and the rest of them during the day will be left sided.
until finally at 10:30 pm
I have the last one for the day...left side.
there are nights I passout in exhaustion, at 1 am,
still raging at a level 5 or 6....
Sopemtimes the head hurts for 40 minutes,
sometimes for 4 hours.
this beast likes to surprise us more often than not.
and we all have something unique.
I just hope you get a different neuro.
I had to fire mine in May....as he was zero help
when I had a severe attack. He said, "go to the E.R.
if the pain doesn't go away" instead of getting me
a sample of soemthing to abort....
I am not a drug taker, but once it's a level 7
I will take anything, including draino (  ),
if someone told me it would stop the pain.
Best wishes for pain free dayas and nights.
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Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
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