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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> New to the site :)
        
(Message started by: chamber on Aug 8^th, 2004, 9:33pm)

Title: New to the site :)
Post by chamber on Aug 8^th, 2004, 9:33pm

Hi,

My name is Jessie. I was just lookingf or some advice.
For the past month and abit i have been getting these really agonising headaches on the left side of my face. They are often to my eye and temple and then also go down to my jaw.

I have gone to the doctor and one thought it was a sinus infection and now the other thinks that its Cluster Headaches. But my problem is that the headaches dont come every day, they do only happen at night, but they last for around 5 hours (really bad pain) then a headache for another 1/2 day or more..

i got one on saturday night at around 10pm and the pain didnt stop until about 5am then i had a genreal headache until around 11pm the next night. But i was fixed up on about 4 tablets of Prodiene Forte.

Im just wondering if any of you had the same type of symptoms? Because when i get these "attacks" my Jaw aches just as much as the headache and my teeth on the left side get so sensitive that if i even drink room temperature water that it hurts so much that i end up crying :(

I am going for a CT scan tomorrow, abit scared about all of that, but i guess it'll help.

Just wanted to know what you all think.

Jessie :)

Title: Re: New to the site :)
Post by karma on Aug 9^th, 2004, 7:17am

Hi Jessie,
Sorry to hear you've got pain. Check out the cluster quiz on the left it may help. I just found this site last week and it can be a bit depressing but their is a wealth of information that is helpful. The one thing thats helped me the most is the water trick. Drink tons of water during the day and during the periods of pain. It may help you to.
Good luck

Title: Re: New to the site :)
Post by pubgirl on Aug 9^th, 2004, 7:23am

Jessie

The CT scan is nothing to worry about, they don't hurt-honest and they will be doing it just to be on the safe side. If it is CH, nothing will show up on it.

Your symptoms aren't totally typical (frequency or duration- 7 hours would be very long for a Ch attack), but they don't readily suggest any other headache type either.
The best advice is to pressurise for a referral to a good neuro who specialises in headaches so you can get a sound diagnosis

Good luck tomorrow, and let us know how it goes

Wendy

Title: Re: New to the site :)
Post by thomas on Aug 10^th, 2004, 5:37pm

The ones at night, do they wake you up? If so, melatonin might be a good idea to take it an hour before bedtime. Talk to your doctor first though.

Title: Re: New to the site :)
Post by chamber on Aug 11^th, 2004, 11:45pm

CT scan went fine, nothing showed up. Went back to the doctors and saw another one for the results, and she said she wants me to go home, and write a journal of my headaches, i dont think she believes me!

so now i am getting them everyday and i am getting hardley any sleep, and they are so painful and i have no medication, except for prodiene forte, in which i have allready taken 6 (in 12 hours, max 8 in 24hours) and they have done little if anything at all.

And on the worse side, i have missed 2 weeks of uni, am behind on everything and have a essay due today that is worth 40% that i cant get done cause i cant it still and concentrate or even think!!!

I need like a quick fix to make it go away, anyone know of anything. i tried the water and it hasnt helped as yet
:(

Title: Re: New to the site :)
Post by UN_SOLVED on Aug 11^th, 2004, 11:54pm

What is prodiene forte ? Never heard of it. [smiley=huh.gif] [smiley=huh.gif]

Is it Meperdine or Demerol ??

PF Wishes,
Unsolved

Title: Re: New to the site :)
Post by E-Double on Aug 11^th, 2004, 11:54pm

on 08/11/04 at 23:45:44, chamber wrote:

So sorry chamber!
If it is Ch then none of that will unfortunately help.
Take some ice put it on you neck.
Take a towel and cover your head over a sink filled with scalding water making a steam bath and
Tons of Coffe!!
At night try to take melatonin so you can atleast sleep!
Do take notes on self and keep a detailed journal and demand help!!!
This will also help as far as school goes.
It can get better jsut stick around and take advice form some of the pros.
Although not docs we are experienced.

Hang in there and explain honestly to your professors!!!!

Can't hurt

Eric

Title: Re: New to the site :)
Post by ExplodingEyeBall on Aug 12^th, 2004, 9:44am

Jessie...

Don't worry about the CT scans and other tests. The docs like to do these first with any recurring head pain to rule out other causes like tumors, cancer, etc... It also gives them a good starting point on what kind of medication can or can't be used for treatment.

The duration of your head aches is incredibely long compared to most who suffer CH but every body has their own unique way of suffering these things.

Getting them at night time is not rare. My worst ones come at night time and last up to 4-5 hours and they ALWAYS wake me up from a sound sleep. Any CH sufferer you talk to will tell you that even this is a very long time for one to last.

Any day time HAs that I get are no where near as severe as the night time ones and last 30-45 minutes max.

I'm sure that every one here will be more than willing to give you advice on how they prevent them from happening or abort them once they start.

I myself choose not to use any preventives since I dealt with drug problems when I was younger. When I do get a bad HA at night time, I normally get up and chain smoke and drink coffee. Some here also use the same or similar method to deal with them. This may or may not do any thing for you but it is my personall way of dealing with it at night time.

My doctor has also given me some samples of Maxalt which is usually used for migraines but has also been known to help some CH sufferers.

Definitely check in to trying oxygen as an abortive for your headaches. There is information about this on this web site and many of the family here uses it.

Imitrex is another abortive that a lot of people here swear by. I have heard though that some have weird reactions to it.

If you are having these for up to 7 hours though, you REALLY need to find something to help. You definitely have my sympathy if you are getting them at night and having them last this long.

Before you do any thing though.........Make sure that you talk to a good neurologist who is CH friendly. Some still don't understand what these things actually are.

Hang in there and find a good neuro.

Keep checking back in at this web site and don't leave us. You'll learn a lot here.

*edytid fur speleeng*

Pat

Title: Re: New to the site :)
Post by marfanoidus on Aug 13^th, 2004, 2:18pm

OK ya'll - here I go again!

DO NOT ASSUME YOUR DOC CAN HELP YOU!!!!!!!!

Regardless of what your condition is, never assume your doc is fully competent and up-to-date in therapies. CHs are rare, and you may be the only case you doc will ever see - so don't be surprised if he's not capable of handling your condition.

If my doc told me to go home and keep a journal of my headaches, and then not prescribe something, I can't describe in this forum how badly I would curse him out and call him every name in the book.

If you want help with this, you have to find someone knowledgeable with CH, or at least specializes in HAs. CHs are horrible, and I have yet to find a way to adequately describe them to others.

But help is out there. A tapering prednisone regimen helps a lot of us to knock the cycle in the posterior long enough for preventives to kick in.

If I had to guess, I would say your trigeminal nerve is getting really flared and is what is causing your jaw to hurt, and for you to be unable to drink water during an attack (I am NOT a dr). I would liken that to how many of us have very sensitive areas in our scalps during attacks and cycles.

Two things:
1) you said this has been going on for a month or so - with any luck, the cycle may end on its own in 2-6 weeks.
2) oxygen shouldn't hurt your teeth, and its a favorite around here for aborting attacks.

good luck to you