Hmmm.  Looks like she didn't want to.

  If you should decide to come back..I need to tell you that the advice to get an accurate diagnosis  is something we tell a lot of folks.  It is good advice.

She has another post on the thread above.   

Cynthia I meant no disrespect.  I was just telling the others that you had posted on another thread so that they could read about you there.  The people that responded, I don't  think that they meant to be unkind.  Please don't stop visiting here.  There are MANY who are willing to help.

Jeannie

Don't let it get to you, I'm sure it wasn't meant to "get off here, go away" type of thing, it was just poorly worded.  Keep in mind that cluster headaches can be and are very painful and draining, both physically and emotionally so sometimes people get short, rude, what have you without meaning to.

"It's vascular, probably cluster headaches" really isn't the best diagnosis but I don't really know what he's basing that from.  What are your symptoms?  Did you go in with a headache diary?  On the left side of the page is a link to the OUCH site, go to Treatment and Other Information and scroll down to Sufferer Recommended Doctors.  Is your neuro on there?  These are doctors that other sufferers have had success with. 

We're here to help and we want to help.  Give us some more information and we'll do what we can to help.  We all know what it's like to go through doctor after doctor, test after test, etc.  Remember, emotions fly high when you're not feeling well and nothing was meant as a direct attack at you.

Cynthia,

Your original post doesn't show up anymore - maybe you deleted it (didn't know you could do that).  From what you wrote on the other thread, a diagnosis of CH is a bit suspect, but who knows!  This disease takes lots of forms.

I would highly reinforce the suggestion to keep a headache log.  I kept a 2-week log writing down every detail I could, took it to a headache specialist, and got the correct diagnosis on the spot after 8 years and dozens of doctors scratching their heads.

Note I said "headache specialist."  Just any old neuro may not do.  I saw two neuros who weren't specialized in headaches and they had no clue.


Finally, you may want to search yourself through the International Headache Society diagnostic criteria for primary headaches and see what fits best:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I'd look up the definitions on that site for hemicrania continua and paroxysmal hemicrania.  They're both one-sided, and can include autonomic activation (eye pressure/tearing and nasal congestion/dripping).

The "good" thing about those two is that they're supposed to respond 100% to an NSAID drug called indomethacin in a matter of days.

If you're going to have to wait awhile to see a ha specialist, print those two out, take them to your GP, and maybe he'll let you try the indo.
Also, have you been to an opthalmologist (not optometrist)?

HI Cynthia!

I was just wondering if you would re-post your symptoms and all of the meds you have tried.  I remember a little of it but not all.  I know you had asked about shadows.  Does it sound like that is what you are having?  Have you tried Red Bull or Rock Star for when you are not in a high pain time?  When I am in full cycle I feel bad for 3-4 months at a time.  Not all of that time is unbearable but I do no feel "right" till my cycle is over.   Please remind us what all is going on with you such as the symptoms that the docs shrugged their shoulders at.   Let us have a second chance to offer our help!

Jeannie

Thanks for the input, everyone.  I've never had to sort through an illness that was out of the ordinary and I'm not as up to speed at taking charge of it as I should be.  I went to the neurologist my primary sent me to, never thinking there might be a difference among them.  So, I've learned, I'll go find a headache expert.  I feel encouraged about that.

So, per request, my meds in the order that they did not work:
tons of ibuprofen
tons of coffee
less coffee
back to tons of coffee
Fioricet (like tylenol with caffeine)
topomax
indomethacin
DHE injection
prednisone
o2 in the neuro's office with just a nose tube
lidocaine nasal spray -- actually that works really well for the pain!  weird, but well. 
verapamil -- finally felt some lightening of my eye pressure, not gone, but lighter

symptoms:
left eye, puffy, droopy, watery, pressure, pain -- my boss asked me if I had had a stroke.
left nose, running, extremely congested, nosebleeds
left face, burning skin, numb skin
left brain, dull pain 24/7, much much more pain at 3am and mid morning
can't sleep lying down
started in Jan, got worse in Feb, gradually better each day since then, but still there, never a time when there is no sensation/pain, but you carry on because you can't lie down anyway

ct scan, normal
mri, normal
blood work, normal

I'm not asking you folks for a diagnosis, just to be clear.  I offered that info because someone requested it.  I also don't think I have true CH, although, maybe I'm just having shadows for ever and ever -- that's why I asked what you all meant by "shadows".  Anyway, I appreciate the time you take to offer your thoughts.

Cynthia

2 things stood out to me:
Burning face / face pain is more in line with trigeminal neuralgia - ask about that
I'm not sure what the effectiveness of prednisone is for CH, but I had thought it was 100%.  Has anyone ever heard of prednisone NOT working with CH?  Nothing has worked for me except for pred, at least before busting.

What wonderful information.  Very useful.  Thank you.  It helps a lot to know the relative effectiveness for different things. 

Another thank you to the person who introduced me to the idea of combining meds, some of this plus some of that.....my docs only offered one thing at a time, all or nothing.  So all this information is very very helpful.

And one more thank you for the idea that I could have more than one thing happening in my head. 

Many many good things to think about.

Two more sypmtoms I forgot to mention
LOUD squeaking in the arteries / veins in my head -- so loud I sometimes can't hear people talking to me (it's not a ringing, it's squeaking!)
and my blood pressure, normally very low, has gone through the roof in the last 3 months (the neuro said, "well, being in pain for so long could do that"...)

Audre wrote on Jun 22^nd, 2008 at 9:30am:


    I wasn't being rude,  I was being succinct .

       Potter

Interesting to know that someone else feels odd skin sensations on the pain side -- from numb to odd pinching to totally on fire, blistered and burnt, can't even think about touching my face or scalp. 

Anyone else feel that?