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        Cluster Headache Help and Support >> Cluster Headache Specific >> please help!
        
(Message started by: dannyoct16 on Jan 20^th, 2006, 9:37pm)

Title: please help!
Post by dannyoct16 on Jan 20^th, 2006, 9:37pm

I've been suffering for over ten years now with what i was told was a cluster headache. My last three years have been spent at the Cleveland Clinic with the best doctor telling me I was a classic cluster but...
I went to the American Migraine Center here in Cleveland to a doctor who told me it might not be a cluster.
I get them about three times a week and they are always in my left side. The pain is intense and last about an hour. She thinks it may not be a cluster because I get this huge knot in my left shoulder area near my neck and also a marble size knot in my neck.
DOES ANYONE GET THOSE WHO HAVE CLUSTERS?
My left nostril get congested, my eyes turn blood shot red and the pain is so bad I would never wish that on my worst enemy.
The Cleveland Clinic had me on 360mg of Verapamil 180 am, 180 pm. 15 mg melatonin and zomig when i got them. I have an o2 tank with a clustermax and they put me on topomax (dopomax!) when i was in real bad shape. I even had a DHE pack on for a week and had to self inject for another two weeks.
I had another MRI yesterday since my clinic doctor refused to do one since i was the "classic case".
Im 29, athletic, never smoked, very light social drinker and not sure why I still get them.
The verapamil worked the first year by tapering them off so that i got half as many as i used to but i figured i mine as well live with an extra one a week and stay off the prescriptions.
This new doctor has put me on a muscle relaxer that i take at night called Zanaflex. So far so good, no headaches! (hope i didnt jinx myself)
I know there are alot of educated people in here that suffer or have a loved one that suffers so any insight would be greatly appreciated. Especially about whether they get stiff around the neck and shoulder.
thank you,
dan

Title: Re: please help!
Post by dannyoct16 on Jan 20^th, 2006, 9:43pm

other important info...i never have had more than one in a day and they are never consistent with regards to time. they can happen as soon as i wake up to afternoon to right after as i fall asleep!

Title: Re: please help!
Post by AussieBrian on Jan 20^th, 2006, 10:01pm

I know all about the knot in the back of my neck and for a long time thought it to be the cause - a pinched nerve or the like. I can help you out that far, at least.

Title: Re: please help!
Post by E-Double on Jan 20^th, 2006, 11:25pm

Our beloved "cluster-lump"

Title: Re: please help!
Post by Linda_Howell on Jan 20^th, 2006, 11:51pm

Yep, a lot of us do. Go to the link to the left of where you're reading this "cluster traits"

Danny?

Quote:

I know there are alot of educated people in here that suffer or have a loved one that suffers

You have no idea.!!!! ;;D lmao

The people on this site are "THE" most well-informed people on the subject of cluster headaches.

Linda

Title: No doubt.
Post by Richr8 on Jan 21^st, 2006, 1:07am

A mjor part of the condition although mine reside more toward the base of my neck at the top of my right shoulder b;ade. Horrible knotting.

Title: Re: No doubt.
Post by MJ on Jan 21^st, 2006, 1:25am

on 01/21/06 at 01:07:26, Richr8 wrote:

mine reside more toward the base of my neck at the top of my right shoulder b;ade. Horrible knotting.

Ditto

Title: Re: please help!
Post by Guiseppi on Jan 21^st, 2006, 1:52am

I think you're a cluster. I get the knot on the right side of my shoulder, at the base of my neck. I bought one of those heated vibrating neck things that Wear when it gets really bad.

Title: Re: please help!
Post by agonymum on Jan 21^st, 2006, 2:52am

yes i have the knotting too , on my right shoulder -cluster side .
i always thought it was from using the computer mouse too much .

Title: Re: please help!
Post by Barry_T_Coles on Jan 21^st, 2006, 5:54am

Hi Dan
Yep get the same thing, bloody annoying and the whole area around it seems to tighten up, all the sinuous in the area creak & groan but then again that could be just me being an old fart.

I use a Mini Tens machine on the area and it gives me a great deal of relief.

Kind Regards
Barry

Title: Re: please help!
Post by godsjoy777 on Jan 21^st, 2006, 7:46am

Yes, Dan.....I also get the lump....sometimes there is one right behind my ear AND on my neck.....yuck......I was prescribed zaneflex too but haven't tried them regularly....hmmm.....

Not everyone is chronic.....You obviously aren't chronic in that you don't get a bunch of them every day of the year....The pain is still terrible and the condition is horrible....Our love and support is here for all types of sufferers.....Thank God for this group of people....Has gotten me through the last few of the 15 years of suffering with these %$$^%$&^%*&&* things!

Blessings,
Karen

Title: Re: please help!
Post by burnt-toast on Jan 21^st, 2006, 9:49am

You appear to have all the classic CH symptoms - I don't get knot(s) during attacks but as you can see its fairly common. A little more work with your doc./meds. seems to be in order.

If you've had these a few day per week for three years your condition is chronic. It's a difficult battle but others like us are still going strong after much longer time periods. The key if finding something that helps tame this nightmare a little. It will take some work.

The most difficult task I experienced was finding the right meds., dosages and medication schedule (best times to take meds.) that worked. Good records and a headache journal was extremely useful. Things aren't perfect but they are now much more liveable.

Take the information you get from these responses and the site with you on your next visit to the doc. If the doc. doesn't seem willing to work with you there's no harm in looking for another doc. willing to work collaboratively with you.

Best wishes on your journey.

Tom

Title: Re: please help!
Post by dannyoct16 on Jan 22^nd, 2006, 7:05pm

got hit last night about an hour into my sleep. two things i can of that started it. i went to a fundraiser and had two draft beers and also messed up my sleep pattern by three hours. there is no possible way i can go on a superbowl cruise for a week without drinking! i better stock up on the imitrex!

Title: Re: please help!
Post by Kris_in_SJ on Jan 22^nd, 2006, 7:50pm

I'd never go on a cruise without my Trex.

Take it and have a good time.

Kris

Title: Re: please help!
Post by robertrickun on Jan 24^th, 2006, 2:44pm

Hello Everyone
My clusters are back-i had forgotten how expensive the imitrex was-anybody find a cheap place to buy this stuff?
robertrickun@sbcglobal.net

Title: Re: please help!
Post by FramCire on Jan 24^th, 2006, 3:04pm

Have you hit up your doctor for samples? Even Family Practice doctors sometimes get samples of it.

I'm sure you probably have already, but it is worth mentioning.

Title: Re: please help!
Post by maffumatt on Jan 24^th, 2006, 5:12pm

mine is on my jaw, one reason I used to think it was a dental problem.

Title: Re: please help!
Post by Ghost on Jan 24^th, 2006, 5:17pm

Hey what is a Cleveland anyhow? ;;D ;;D ;;D
Good luck and fight on!!!