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        Supporter's Corner >> Supporter's Corner >> getting educated
        
(Message started by: jillybean on Dec 11^th, 2004, 4:17pm)

Title: getting educated
Post by jillybean on Dec 11^th, 2004, 4:17pm

Hi, I'm new. I have been lurking around and reading for about a week. That was the day the new neuro told hubby he thinks he has clusters.

My husband has been off work now since the 11th of November. He is in severe pain. But he does not seem to have short term "attacks." There is a range of severity, but he isn't pf. Is this still a form of clusters?

I encouraged him to come to this site, but he hasn't seemed interested. He's a little in the pity party stage. I don't blame him, mind you. He got up to a 10 one day and basically said his good byes. We were both scared. I know you identify with the helplessness feelings.

The best help has been sympathy and the "sharp teeth" with drs.

Monday will be a week on Topomax. I see poor opinions of this med on the board. That worries me. His pain has diminished over the past 3 days, tho.

I don't see a lot of activity on this board. But I feel uncomfortable whining on the sufferer sites. They have it so much worse. This site is great for information in non-medical language.

Jill

PS- Oh, and how do you find where you left a message? I jump around and read a lot and then can't find where I've posted to rejoin the discussion [smiley=worried.gif]

Title: Re: getting educated
Post by Grandma_Sweet_Boy on Dec 11^th, 2004, 5:33pm

Jill - if you've posted your email addy - then when you respond to a post, you'll see a little box that says something like - notify me of replies - it'll then send an email to you to let you know something you were interested in has been posted on that thread.

I'm sorry to hear about your husband - jump out there on the main board. There's a ton of help some who have suffered for years and are a huge help to others.

Has your hubby tried 02 yet at all. Have you checked all the boxes to the left of the message board? Again, lots of help there. Have him take the cluster quiz or you take it for him - I expect most supporters could answer the questions.

Sorry you have to be here, but you won't find a better group of people anywhere. Keep in mind - we're family here so sometimes like family does, we get a little testy with one another. At the end of the day though - we'd do anything in our power to help another of our family.

Hugs to you and your hubby.

Carol

Title: thanks
Post by jillybean on Dec 11^th, 2004, 6:15pm

for your reply.

The dr mentioned o2, but wants to wait on spinal tap before steriods or other treatment.

He has been treated for migraines for about 8 yrs. Two years ago he had a 3 wk "migraine," and they adjusted the dosage of migraine meds. Seemed to work...

Thanks for the advice on replies. I actually saw that box as I posted this and that's how I know you replied!

Be patient with us newsbies... we'll catch on eventually. This is my first message board.

I guess I can ask sufferers about the duration ?.

Jill

Title: Re: getting educated
Post by Redd715 on Dec 11^th, 2004, 8:06pm

Jilly probabgly best to take the cluster quiz ...there is a link to the left

<<over there...lol

It's still pretty rare to find a good Neuro who really understands clusters, so be patient. MRI's are usually the first line of tests...never heard of a spinal tap for dx'ing cluster, but then nothing suprises me anymore.

take the first 16 question quiz and then the 30 question one....you may come up with some answers...

From a suffere's point...never had an attack last more than three hours... please...take the quiz for your hubby...