Well, tomorrow I am taking my husband for an mri.  Since he was misdiagnosed with sinus infections and the only test done was a sinus xray, I would feel better knowing that they took a look to be sure nothing else could be causing these dreaded headaches.

He took the melatonin again tonight although last night it was of no benefit.  I told him that sometimes it takes up to a week or so to see the benefit. 

The oxygen has been a god send for him.  Makes this more tolerable.  Still gets the hits but most can be aborted fairly quickly.

The verapamil has helped with lessening the intesity of the hits although some very strong ones still get by.  Going to talk to the dr about raising the dosage.

I know I left for work this morning in tears because there is nothing I can do to help him.  I took care of 2 parents dying from cancer and never saw them in as much pain as I see my husband in.  If there was pain, there was always something we could do to control it.

The mri has me a little scared as I am afraid they might find something bad.  But then again, I am afraid they might find nothing and he will just have to deal with this for as long as it takes.  What a situation!?

More or less a rant.  Thanks for listening!

Lori

Lori - sending you a hug!  I think supporters have the tougher job - standing by and watching someone you love in pain - and being able to do nothing - must be very difficult.

Hang in there!

Carol

Rant away, love and hugs your way. The MRI is a great idea, undoubtedly not needed, but nice for the peace of mind. Don't sweat the CH. 32 year episodic here, it's controllable and manageable. Keep learning here, educated CH'ers hurt a lot less. ;)

Joe

Lori, you're doing great, hang in there!  Testing is always scary, regardless.   Just keep learning and you'll be prepared to help him through the attacks.  I know it's hard watching him suffer, but just believe relief is on the way soon.  Hang tough.. :)

Any doctor worth his or her salt would order an MRI to rule out the less than 1% chance that it's something else BEFORE they issue a diagnosis of CH. Not useless.

Think about it - what if a bunch of docs diagnosed a number of patients with CH throughout their careers, never ruling out a brain tumor with some pictures. Eventually one of these docs somewhere, sometime is going to get burned because it will turn out it WAS a brain tumor.

I can't imagine being a doctor and proclaiming that somebody had CH without eliminating the other possibilities.

You can't diagnose CH strictly on what it presents as - there are too many headache types that have very similar symptoms. You also have to know what it's NOT.

I had two people tell me over the Christmas holiday that they know someone who was having similar symptoms and in both cases it was a tumor on the pituitary gland.  Just made me think too much so I called the dr.

Brew wrote on Jan 4^th, 2011 at 9:30pm:

Any doctor worth his or her salt would order an MRI to rule out the less than 1% chance that it's something else BEFORE they issue a diagnosis of CH. Not useless. Think about it - what if a bunch of docs diagnosed a number of patients with CH throughout their careers, never ruling out a brain tumor with some pictures. Eventually one of these docs somewhere, sometime is going to get burned because it will turn out it WAS a brain tumor. I can't imagine being a doctor and proclaiming that somebody had CH without eliminating the other possibilities. You can't diagnose CH strictly on what it presents as - there are too many headache types that have very similar symptoms. You also have to know what it's NOT.

ABSOLUTELY TRUE!.....personal experience here with an acquaintance who exhibited "clusterlike" symptoms.

CT (after SECOND opinion ordered testing)revealed a, fortunately, benign brain tumor...surgery IMMEDIATELY performed...he's back home...no deficits...he was gonna wait it out...would have been fatal.

You don't mess with these symptoms......

Best,

Jon

I'm sorry if I was mis understood. My attempt was to re assure her, in her husbands case, the MRI will show nothing and all she has to worry about is CH. I whole heartedly agree and encourage anyone facing a CH diagnosis to go thru the full realm of exclusionary tests, to elinate the possibility of anything more sinister.

Joe

Guiseppi wrote on Jan 4^th, 2011 at 10:28pm:

I'm sorry if I was mis understood. My attempt was to re assure her, in her husbands case, the MRI will show nothing and all she has to worry about is CH. I whole heartedly agree and encourage anyone facing a CH diagnosis to go thru the full realm of exclusionary tests, to elinate the possibility of anything more sinister.

Joe...you did just fine....Lori needed to hear it.

Gotta rule out the possibilities...and I'm a little sensitive because I so often see folks wishing to bypass all those damn tests..."I already know what I got"....well, nope, maybe not....

Best,

Jon

I certainly took no offense to the suggestion that they will probably find nothing.  It was kind of our mind set anyway but when others displayed the same signs that I call cluster headaches and it was something else, something they could help with, I figured that we needed to explore the possibility that perhaps there may be a reason he is getting these blasted things.

Also really ticks me off that not much is known about them and when you try to explain that he has cluster headaches, people don't get it.  They don't understand just how they take over your life.  I even showed his parents a video on You Tube over the holidays of someone in the middle of a cluster attack to show them just what their son is going through.  Now they are worried.  Like I said, people just don't get it.  They hear headache and cannot relate a headache to being like what you all go through.  The girls at work looked at me like I had two heads when I told them we were getting oxygen for my husband.

Lori

Go here:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Print off a few copies and always have one handy to give to people who are interested.

You are right, people don't "get it" or understand and every body knows how to cure them really easy.  That's why I don't even talk about this stuff to any one except my doctor and the folks here.

Use the Collegue letter referred to, and then use the "Brain Freeze" analogy.  If you are drinking a slurpee and get a brain freeze and keep drinking it as fast as you can for about 45 mins it would equal about a Kip 5.  They will have no idea what a Kip 5 is, but it is about a mid level attack.  That analogy has helped a few friends "get it" after having read the letter.  No one really "gets it", but they sometimes try.

Jerry

Had to laugh today going to the MRI, hubby tells me about the weird dream he had last night.  Glad you warned me about the melatonin, so I warned him too!  He dreamed he ate one of our kids guinea pigs!  LOL!  I think he overfed them tonight to make it up to them!

Lori