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Cluster Headache Help and Support >> Getting to Know Ya >> Not sure yet if I am a CH...
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Message started by belinda on Aug 16th, 2008 at 12:22pm

Title: Not sure yet if I am a CH...
Post by belinda on Aug 16th, 2008 at 12:22pm
Hi everyone,
I have had this pain for about 20 years off/on...Dr.'s have guessed that's it's migraine/and or sinus..eventhough I've had 2 CT's done during an attack and sinuses come back "normal"...

It's a sharp CONSTANT STABBING pain in my right eye..goes through to my right temple and I can feel it down the back of the right side of my neck......the SHORTEST time it has lasted was 4 hours..which was 2 weeks ago..it normally last atleast 8 hours....That morning when I woke up my right eyelid was droopy..which I had never noticed before...and my right nostril always "drains" which has always made peole think it was sinus related...sometimes my right eye tears as well...

NOTHING OTC will come close to offering me any relief..the only hope I have when I get the pain is to take 3-4 Tylenol PM and knock myself out....if I sleep it off, the pain still "lingers" the next day...dull stabbing pain...and it also feels like someone is trying to rip my eyeball out and all of the tendons attached into my temple...my last stabbing pain attack of 2 weeks ago and I still have a tender, sore, right temple..and dull pain in my eye.

My PCP prescribed me Imitrex for the next attack, and also wants me to see a neurologist......we don't know if it's a type of CH...or a migraine......I also get very severe headaches from strong smells..perfume...cleaning products...candles...etc....they don't always coincide with the stabbing eye pain......but sometimes do........

IT IS JUST VERY FRUSTRATING.........

Thanks for listening..and any input from your knowledge and experience would be greatly appreciated.

:D

Title: Re: Not sure yet if I am a CH...
Post by BrianJ on Aug 16th, 2008 at 12:32pm
Hi and Welcome

alot of it does sound like CH but a big factor of CH is the fact they last no longer than 3 hours usually, it could just be that you have both CH and migrane take the cluster quiz to the left and make sure you read the whole page and answer all the questions I hope to god that you dont have CH and it is migrane although migrane is very painful to so i would not wish that on you eather, i am one of the unlucky ones who have both Pain Free wishes to you

Regards
Brian

Title: Re: Not sure yet if I am a CH...
Post by Charlotte on Aug 16th, 2008 at 1:32pm
hello Belinda and welcome aboard.

Many of us have more than one type of headache.  The one sided drip and lasting 3 hours or less and being a righty are all in my bag of tricks too.

Many people here use imitrex injections.  I use maxalt melt which works 70% of the time, and verapamil as a preventative for ch and Indomethacin for paroxysmal hemicrania (cousin to ch).  O2 and slamming a red bull at the first sign of a hit help.

If you do see the neurologist, make a list or chart of the things that occur during a full day or so, and take some of the literature people here will probably provide you a link for.

My neurologist had little experience with ch but was willing to learn and helpfull in peeling the layers of my different kind of headaches.  Sometimes willingess and kindness are more important than experience, in my opinion, and well worth cultivating.

Your gp sounds good too, in the listening department, and sounds willing to do a little research on your behalf.  The gp could help you try verapamil and set you up with O2.

Good luck,

Charlotte

Title: Re: Not sure yet if I am a CH...
Post by mezza on Aug 16th, 2008 at 10:42pm
Hi

I don't have much to add because you've gotten some great advice already-  but in terms of a 4 hour headache.  sometimes when people say they have a 4 hour headache they mean that the Cluster lasts 30 minutes to an hour or so, for some longer,    but they "shadow"  for the rest of the time.  Shadowing is still headachey but not a full on attack.   When I am shadowing after an attack or before attacks,  my temple hurts, neck sore and still pain in temple, but still not a full on attack with the droopy eye, runny nose, holding my head, rocking , whimpering .   Look at the kip scale on left.  A shadow for me is a 2 or 3 and sometimes I shadow all day in between attacks when I am in high cycle.


Kelly


Title: Re: Not sure yet if I am a CH...
Post by Ungweliante on Aug 17th, 2008 at 5:34am
4-8 hour headaches - you can take pain medicines and sleep them off.

To me, that doesn't sound like a cluster headache. A CH lasts a maximum of three hours, which to my understanding is rare. Usually they last around an hour.

Also, it's impossible to sleep a CH off. The pain is so intense that sleeping is not an option.

- Best regards,
Rosa

Title: Re: Not sure yet if I am a CH...
Post by Bob_Johnson on Aug 17th, 2008 at 10:23am
Locating headache specialist.

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.





Title: Re: Not sure yet if I am a CH...
Post by Guiseppi on Aug 18th, 2008 at 10:42am
Glad you found us, now let's see if we can help you.

First off, read Bob's post carefully, until you get a decent neuro you're liable to be grasping at straws. Start keeping a VERY detailed diary on your headaches. When they start, how fast they build, how high they build, (Use the KIP scale on the left for measuring the pain), how long they stay at peak, where the pain manifests itself, and how fast they recede. To put it mildly, the brain is a complex mechanism! The diagnosis is difficult and will be found in the details.

People like Charlotte have the toughest time getting the initial diagnosis because they have multiple headache types. This may be the case with you, making it critical your diary is detailed enough to allow the doctor to see the difference in your diary.

Hoping you get an answer soon, headaches suck!

Guiseppi

Title: Re: Not sure yet if I am a CH...
Post by belinda on Aug 18th, 2008 at 6:55pm
Thanks everyone for your input so far.  I have been keeping a "headache diary" for about the past 2 months..as that is about as long as this last cycle has lasted for me.  :(

I live in a very small town...so my options are somewhat limited.  I was advised this this Neurological Association deals with headaches, clusters & migraines....my appt. is not until Sept. 3rd, unless there is a cancellation.

I will keep you posted as to the outcome.

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