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        New Message Board Archives >> 2003 Posts >> Neuro Diagnosis
        
(Message started by: Ghost Cluster on Dec 24^th, 2003, 7:49pm)

Title: Neuro Diagnosis
Post by Ghost Cluster on Dec 24^th, 2003, 7:49pm

Holiday Greetings to all ;)

Visited the Headache Clinic at the Univ of Pittsburgh Med Center yesterday. Dr. Kaniecki. Bad news I have CH's. Good news they are not as severe as most of yours. He prescribed 240 mg of Verapamil a day.

In addition to the eye, head, temple pain, today my face became very hot and my jaw ached and I had trouble opening and closing my mouth. Of course my wife prefers it shut..lol Anyone experience those kinds of symptoms? My pain has been constant the last 6 weeks when it started. No breaks, but I'm able to sleep. Thanks for the support and suggestions etc.

How do you respond to this statement?
All headaches occupy some position along a linear continuum from mild to severe. Headaches differ from one another only in degree of severity, allowing for individual variation in reported symptoms generally consistent with severity. With this model we don't have to keep inventing new disease catagories to cover every new reported variation in symptoms.

Title: Re: Neuro Diagnosis
Post by t_h_b on Dec 24^th, 2003, 9:43pm

Facial flushing, occasionally, but nothing with the jaw or mouth for me.

Maybe you have something other than/in addition to CH? Cluster pain isn't constant. If you have a headache that lasts for weeks, it's not a cluster headache. If you have pain in your jaw or trouble with your mouth that lasts weeks, it is probably not due to CH.

I could be wrong, I just haven't heard of symptoms like that associated with CH.

It could be that you're grinding your teeth from the pain and stress, maybe even when you're asleep. You can get a mouthguard from your dentist to prevent that.

Title: Re: Neuro Diagnosis
Post by Woobie on Dec 24^th, 2003, 10:42pm

TMJ???

Title: Re: Neuro Diagnosis
Post by Patrick_A on Dec 25^th, 2003, 12:23am

If you arent awakened in the middle of a sound sleep with that awful pain. I'd venture to say you DON'T have CH's.
I know thats not what you wanted to hear, but i am sorry. CH's CAN last a few hours, but i'd bet typically they last about 1-2 hours for most. A constant pain that lasts for more than 4 hours raises a red flag for me.
So actually i should say....I am happy to say, it doesnt sound like CH to me.

Merry Christmas, Patrick :)

Title: Re: Neuro Diagnosis
Post by ave on Dec 25^th, 2003, 9:05am

Sorry to disagree....

If the clusters are (still) comparatively light, or if the attacks come ONLY in the daytime, they will not wake anybody from sleep. If you don't get nighttime attacks you just can't say.

It is better to say: if they do, it is clusters for sure.

And why anybody should wantto hear they have clusters is beyond me. But then, a lot that's going on here is...

Merry Christmas

Title: Re: Neuro Diagnosis
Post by Patrick_A on Dec 25^th, 2003, 9:16am

You might be right Ave, But for sure i have never talked to anybody who could sleep with a CH, and i have never talked to anybody who had one constantly for 6 weeks. But i also know CH has very many different traits. I personally hope that Ghost Cluster doesnt have CH.

Merry Christmas, Patrick :)

Title: Re: Neuro Diagnosis
Post by jonny on Dec 25^th, 2003, 9:25am

See the fat yellow/orange nerve, that is the nerve that causes cluster pain. See how it runs into the eye, it also runs into the jaw.

What does this mean?...Go ask your Doc.....LOL ;;D

http://tinyurl.com/wxjd

...........................jonny

Title: Re: Neuro Diagnosis
Post by Patrick_A on Dec 25^th, 2003, 10:13am

Yup, And do you see that vein that is beside that yellow/orange nerve. I am inclined to beleive that it swells and puts pressure on that nerve that causes CH pain. Hence, reduce the swelling of that vein and no more pressure on that nerve!
Nice picture Jonny, never saw that one before!

Patrick :)

Title: Re: Neuro Diagnosis
Post by Ghost Cluster on Dec 25^th, 2003, 11:15am

Thanks for the replies....The Headache specialist said I have a type of CH...because of the severe pain behind my eye, tearing of the eye and some of the traits you all have. He said it's a mild CH because I can sleep at night. He ruled out Migranes because I'm not sensitive to light and don't have any other traits associated with them. I'm having an MRI of the brain next week and a blood test to rule out temporal arteritis. He thinks it could be a sinus related CH. Anyone ever here of that?

Yesterday I had severe pain behind my right eye that lasted all day and my head felt like it would burst. I know that's not typical of CH's. The Doc thinks because of my age 57 the CH's are not as severe. Any opinions?

Title: Re: Neuro Diagnosis
Post by Patrick_A on Dec 25^th, 2003, 11:21am

I just dont want to speculate GC. I truly hope ya dont have CH. But you are welcome here nevertheless. CH definitly has different traits. But some of the common traits tend to not veer too far from the normal CH.

Merry Christmas to you, patrick

Title: Re: Neuro Diagnosis
Post by don on Dec 26^th, 2003, 8:20am

Quote:

I'd venture to say you DON'T have CH's.
I know thats not what you wanted to hear, but i am sorry

Tell me that and I promise you will have nothing to be sorry about!

Title: Re: Neuro Diagnosis
Post by Ghost Cluster on Dec 26^th, 2003, 2:38pm

on 12/26/03 at 08:20:20, don wrote:

Tell me that and I promise you will have nothing to be sorry about!

Don...you are right...I truly would have nothing to feel sorry about if they aren't CH's. I pray that they aren't. I hope I haven't given the impression that I want CH's just so I can be part of the group..yikes... I wouldn't wish that suffering on anyone. The specialist said it's a form of CH's. I'm having some more tests MRI and blood. Mabye he will change his diagnosis then. I am not in anyway trying to compare my pain/suffering with anyone here. Whatever I have is truly painful...with many of the same symptoms of CH's. My heart goes out to all here who suffer. Whatever I have I will still stay connected to this site because it already has brought me some comfort and valuable information...regarding meds etc. Happy PF New Year to all!

Title: Re: Neuro Diagnosis
Post by Charlie on Dec 26^th, 2003, 2:54pm

Maybe we should give the MDs a chance. It'll be great if it isn't CH but it sounds too much like it to me. I truly hope they'll never wake him up.

I'm hoping he'll stick around and let us know how it works out. At least he's on the right track. My jaw was never affected but I like Jonny's point.

Charlie

Title: Re: Neuro Diagnosis
Post by kim on Dec 26^th, 2003, 2:57pm

There is no such thing as a "mild ch".........

PFDAN and well wishes

Title: Re: Neuro Diagnosis
Post by River_Rat on Dec 26^th, 2003, 3:18pm

I've had shadows that have lasted for days, with big time hits every few hours, thats when I'm peaking.

I have also had pain in my jaw, but not major.

I've also slept through the night while in cycle, but only while on meds. For some reason while taking Amerge AM and PM I was pretty much pain free at night. I would only get hit during the day.

Just my 2 cents

LEE

Title: Re: Neuro Diagnosis
Post by Renee on Dec 26^th, 2003, 6:00pm

GC,

Read up on CPH (chronic paroximal hemicrania), which is a headache in the cluster family where the pain is always there unless medicated just not at the massive intensity of a cluster.

I suffer from CPH and CH. CPH can be kept in control with Indocine and o2 and I have found that verapamil and topomax is a good CH preventative along with the o2.

CPH does cause me some jaw pain and pain behind the ear at times. Oh...if doc gives you Indocine..TAKE ON A FULL STOMACH ALWAYS!

Do you have any popping in your jaw when you eat or open jaw real far? The clenching/grinding of teeth is a contributor to my headaches and I can't find a way to stop doing these things, but I just continue to clench and grind thru the hard plastic tmj guards.

good luck and i.m. me if you have any questions about cph.

renee

Title: Re: Neuro Diagnosis
Post by Ghost Cluster on Dec 26^th, 2003, 8:40pm

How do you respond to this statement?

All headaches occupy some position along a linear continuum from mild to severe. Headaches differ from one another only in degree of severity, allowing for individual variation in reported symptoms generally consistent with severity. With this model we don't have to keep inventing new disease catagories to cover every new reported variation in symptoms.

Title: Re: Neuro Diagnosis
Post by chronic_chic on Dec 27^th, 2003, 1:59am

A brief article on CH (not going to endorse or condone) from Diamond Headache Clinic...discusses pain.

http://www.diamondheadache.com/article_archives/cluster_headache.html

Renee,

I have to read up on these headache types again, but correct me if I'm wrong. Isn't it Hemicrania Continua where the headache is present all the time at the moderate level with the stabbing headaches on top?

I thought with CPH you had breaks in between but the attack frequency had to be greater than 16 attacks per day, and the attacks are severe in nature, located around the orbital of the eye or at the temple.

In both cases, the headaches are one sided and relief is almost 100% guaranteed with indomethacin (indocin). Also, congestion and tearing are present on the afflicted side with both types of headaches. Droopy eye can be present with both types as well.

This is off the top of my head for now...I'd have to pull out my headache textbook and reread for more accuracy, but I thought this was what I remembered...
Let me know if I'm wrong...I'll have to double check the text in the morning! Take care!

~Lizzie :)

Title: Re: Neuro Diagnosis
Post by Prense on Dec 27^th, 2003, 8:53am

on 12/26/03 at 20:40:17, Ghost Cluster wrote:

That would be just fine if the same med worked for every type of HA. Since that is not true, there must be different categories for HAs. When a cure for CH is found, people that are misdiagnosed will truly be hating life... Symptoms allow for diagnosis...which leads to treatment. Therefore, I think the above statement is a load of crap.

Chris

Title: Re: Neuro Diagnosis
Post by don on Dec 27^th, 2003, 9:32am

Quote:

I wouldn't wish that suffering on anyone.

Having CH or being part of this group?

Title: Re: Neuro Diagnosis
Post by Ghost Cluster on Dec 27^th, 2003, 4:31pm

on 12/27/03 at 09:32:35, don wrote:

Having CH or being part of this group?

Don,

Hysterical ;;D

Title: Re: Neuro Diagnosis
Post by Unsolved on Dec 29^th, 2003, 12:13am

About the jaw pain...I noticed that others are not having this pain. I DO have this pain, mainly when it's a KIP 9 or KIP 10 ... then > You can just draw a line down the middle of my face and one whole side is POUNDING IN PAIN ... including my jaw, teeth, and ear. I think I know what it feels like to have your face crushed with a bat !

Unsolved