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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> I need help and info!!!
        
(Message started by: jaw_pain on Nov 26^th, 2005, 10:50pm)

Title: I need help and info!!!
Post by jaw_pain on Nov 26^th, 2005, 10:50pm

I am confused and in pain. I have read a lot of information about cluster headaches. But I hardly ever have pain in my eye.

My pain is almost always in my left jaw. It feels like a nagging tooth ache that progresses in to a worst one. Not really throbbing but very painful like a really bad toothache.

I go back and forth trying to decide if it is a toothache or something else. I had it about 2 years ago and I had a tooth pulled. Now it is back and has been for about 3 weeks.

I see a neurologist for my migraines. He has never brought up the subject of cluster headaches. I was told if the pain got too bad and the hydrocodone didn't help to go to the ER for a shot. When I went, they treated me like a drug addict

Please for give me if my spelling goes down hill. The pain is revving up.

Anyway, I usually give up on the idea of a toothache when the pain spreads to the entire length of the upper jaw and the bottom, but is confined to the left side.

It moves to the temporal area and the top of the check bone. Sometimes when it gets really bad, a different type of pain simultaneously goes from the hinge of the jaw, under the ear to the back of the head.

I have another appointment on Wednesday and I am going to bring up cluster headaches and take some info about it. I am also going to ask about oxygen treatment.

Everyone here seems to be pros on the topic of cluster headaches. Can someone give me some feed back on whether or not my pain could possibly be a cluster headache, since I rarely have eye pain and no droopy eyelid or runny nose.

PLEASE HELP!!!!

Title: Re: I need help and info!!!
Post by AussieBrian on Nov 26^th, 2005, 11:00pm

Happy to help, just please understand that we're not doctors. Jaw pain is not unheard of in cluster headache but start by doing the Cluster Quiz on the left.

Let us know how you get on and we'll take it from there.

Importantly, you're in the right place and we'll help you every inch of the way.

Title: Re: I need help and info!!!
Post by nani on Nov 26^th, 2005, 11:02pm

OW! Those symptoms sound a lot like my TMJ. It can be quite brutal. Why not see an oral surgeon, at least to rule it out. If it's TMJ, there are some effective treatments for it. Toradol (a non narcotic pain med), worked best for me along with hot compresses and muscle relaxants. Some dental work to adjust my bite helped immensely in the long term.
If it's not TMJ, and you still get the same pain, see a neourologist. Your pain doesn't sound like typical CH, since the pain doesn't affect your eye or temple. But if it hurts, there's got to be an answer. Good luck to you, and keep us posted. pain free wishes, nani

Title: Re: I need help and info!!!
Post by E-Double on Nov 26^th, 2005, 11:03pm

Take the quiz!!

Brian is correct. A wise man he is

How long does your pain last?

Do ya ever do odd things to alleviate it?

Does it wake you up ou tof a sound sleep?

Does it leave as quick as it comes on?

Never in the eye? or near?

Pain sucks!
Hope ya find answers

Title: Re: I need help and info!!!
Post by mcf69 on Nov 26^th, 2005, 11:06pm

Just a couple questions, how often do you have the pain, how long does it last, and when does it come on?Try the cluster quiz in the links on the side of the page. By the way you describe the pain it may be cluster headaches, but sounds a little bit more like trigeminal neuralgia, try a google search on it. Not all cases of CH have the classic signs, so it is deffinately something to look into with the neuro, please let us know how you make out, and welcome to the board.

Title: Re: I need help and info!!!
Post by jaw_pain on Nov 26^th, 2005, 11:35pm

Thanks for the fast response. I replied to this one because it seemed to combine all the questions that every one else asked.

I took the quiz before I found the message boards. I was still a little confused. I answered according to this specific pain. I do have migraines so I could have answered yes to almost all of them at different times. I did answer yes to most of the second half.

I answered the questions below.

on 11/26/05 at 23:03:40, E-Double wrote:

Take the quiz!!

Brian is correct. A wise man he is

How long does your pain last?

The pain lasts for a couple of hours at least. Most of the time I take so much medicine that I don't really know when it stops. I guess it dies down some, but it sometimes wakes me up after I have gone to sleep. But some times I can feel the affects of the meds but the pain wont let me sleep

Do ya ever do odd things to alleviate it?

No not really, most times I just sit in bed and hold it and twist and turn and moan. I try hard to go to relax and take deep breaths. I have sleep apnea so I usually put on my mask and take really deep breaths with the mask on (to bad I don't have oxygen hooked up to it :) )

Does it wake you up ou tof a sound sleep?

Yes sometimes

Does it leave as quick as it comes on?

Yes sometimes it does, but the last couple of days it seems to linger in varing degrees of pain

Never in the eye? or near?

It is rarely in the eye, for instance I feel a little pain in my eye now, but that is only after many hours of pain off and on in the jaw area. I guess it is near the eye but it is localized between the top of the jaw and the cheek bone

Pain sucks!
Hope ya find answers

Title: Re: I need help and info!!!
Post by jaw_pain on Nov 26^th, 2005, 11:37pm

My nuero keeps checking for that and he says that's not it. I have had MRIs and CTs that show nothing.

on 11/26/05 at 23:02:55, nani wrote:

Title: Re: I need help and info!!!
Post by Barry_T_Coles on Nov 27^th, 2005, 6:17pm

Hi jaw pain

I to get bad tooth ache when getting hit, had a wisdom tooth removed about six years ago during my first cycle, didn't stop the pain, last time around had the nerve removed from my only tooth left on the L side and still didn't stop the pain.

We are all different in the way the beast takes out it's pleasure on us.
Here's a link to TMJ hope it helps

http://www.tmj.org/basics.asp

Best of luck
Barry

Title: Re: I need help and info!!!
Post by BarbaraD on Nov 28^th, 2005, 7:16am

I've had my trigeminal nerve KILLED and have no feeling in my left side and still get tooth aches and ear aches and CH so go figure.

The MRI and CATs won't show anything if it's CH (that's the good news). They'll show up migraines, but not CH. Pet Scans MIGHT show something, but not always (the jury is still out on that one). We're VERY hard to diagnose and most neuros don't have a clue - we MUST educate them!

Ask questions of your neuro -- How many CH patients do you have? How many CH patients have you treated? Do you even know what CH is if it jumped up and bit you? If he/she cops an attitude with you -- Find another neuro and fast. Some of us went thru a lot of docs before we hit on one that knew something. I personally went thru some "world renowned" specialists who I called "kooks" to their faces until I found a nice little neuro who actually knew what CH was and has been treating me for the past 10 years. He has migraines and keeps telling me he's glad that's "all" he has. He treats numerous CH patients (I send him everyone I run into).

don't dispaire - help is available - you just have to look for it.

Hugs BD

Title: Re: I need help and info!!!
Post by StressFree on Nov 28^th, 2005, 3:17pm

Your headaches sound like cluster attacks to me. Mine started over 20 years ago with stuffy nostril and tearing eye, but the last few cycles I've had not every attack gives those symptoms. Also the way you describe the pain moving around is exactly what I get during cluster attacks. Similarly, more in the temple rather than eye area these days, as well as intense pain in jaw/cheek and around or through to the back of my head. Try the oxygen to abort at home, and Maxalt (if no heart troubles) when getting hit at work. Verapamil may break or reduce a cycle for you and seems to have the least side effects of cluster meds. Best of luck to you, Rich

Title: Re: I need help and info!!!
Post by imnotbub on Nov 28^th, 2005, 3:34pm

I have a broken tooth on the side I get 'hit' and thought it was related. It apparently is not, as once I am out of cycle, the tooth, which has had root canal, no longer bothers me. The pain almost always includes the upper gum area as well as the temple and eye, giving the impression of tooth ache. I have yet to have one without the eye being involved. Stay away from hydrocodone, too habit forming for me. This go around I have found Red Bull to be a godsend. Cheap, easy to get, and won't hurt you if it doesn't help.

Title: Re: I need help and info!!!
Post by Kris_in_SJ on Nov 28^th, 2005, 7:50pm

Hi and Welcome,

I can't tell you how many clusterheads have had teeth needlessly pulled over the years in an attempt to ease the pain.

It's not uncommon for people to have both Migraines and Clusters. Question your neurologist as suggested above. You might also find some useful info in this link.

http://www.brightok.net/~mnjday/chtherapy.pdf

Read it, print it out and take it with you to the neuro.

You might also want to keep a headache (eyeache) diary noting the times of day, length of duration, what relieves the pain and doesn't, etc. to take with you.

Personally, I have pain all along my trigeminal nerve when getting a cluster hit .... eye, ear, jaw, upper teeth, left sunus, left eyebrow and temple.

Best of luck getting a final diagnosis - hope it's not clusters. Hugs,

Kris

Title: Re: I need help and info!!!
Post by jaw_pain on Nov 29^th, 2005, 7:54am

Thanks for all your help. I haven't responded to all the replies but I have read all of them. Every time I get a notification I check the board.

I have been making notes and absorbing all of the input. I see my nuero tommorrow.

Thanks alot, keep the info coming

Title: Re: I need help and info!!!
Post by TxBasslady on Nov 29^th, 2005, 3:46pm

When first diagnosed with Ch, my symptoms were classic CH. Pain in and around the right eye and the temple area. A wake-up call at the same time every morning....an hour and 1/2 after going to bed...regular as clock work.

Over time, the CH pattern has changed and I have the pain more localized to the cheek area and the pain is much like what you describe. My teeth on the right side, upper and lower hurt and ache. The pain in the eye and temple area are secondary to what I feel in the jaw area.

What did not change, was the timing of the pain. No matter where the pain was located.....it always came at the same time as before.

I wish you luck in getting an accurate diagnosis. If you do have CH, there's great support and good information here. Let us know what you find out from your doc.

Jean