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        New Message Board Archives >> 2007 General Board Posts >> Starting to look like a Cluster Head
        
(Message started by: peacestock on Jan 9^th, 2007, 12:14pm)

Title: Starting to look like a Cluster Head
Post by peacestock on Jan 9^th, 2007, 12:14pm

I notice that with each cycle, my eyebrows are in different positions. My left (the beastly side) is up higher and looks more youthful. My right it a little more relaxed and droopy. Now I always look perplexed!

I have also noticed that in the survey, the "other" list for abortives is quite high. Can ya'll give me some example of the "other" things that you try to get rid of the beast? I do an ice pack on my neck. It doesn't stop the pain, but it feels good.

I am in the middle of this cycle. Woke up at 6:00am with what felt like an axe pick in my head. What really sucked was I had to get up at 6:30 and I really wanted that extra half hour of sleep. Oh well. Could be much worse. This cycle isn't my worst so, I am counting blessings.

Peacestock
P.S. I also make loads of kidney stones. I belong to a support group for that as well; we call ourselves "stoners". People are going to start to wonder about me.

Title: Re: Starting to look like a Cluster Head
Post by Shedz on Jan 9^th, 2007, 12:28pm

I do the ice pack thing too, Red Bull helps to abort a hit :)

Title: Re: Starting to look like a Cluster Head
Post by Margi on Jan 9^th, 2007, 12:29pm

Hi Peacestock - I see you're in Calgary. Us too. My hubby is the clusterhead, blessedly still in remission.

The best abortive you will find is oxygen delivered at a high flow rate (>8 lpm) through a non-rebreather mask. You will need a prescription for the O2 AND the mask (which is stupid but a horribly long and boring story about our AHC system ::)). We use Medigas as our supplier, the one down by the new Costco off Glenmore and Deerfoot. Len is our guy there and he's wonderful. It's very inexpensive and Medigas delivers. We keep an S tank in our basement, it's 4' tall and lasts my hubby through about 30 attacks.

Sorry to hear you're suffering.

Go Flames. Get better, Iggy - we need you!! :-[

Title: Re: Starting to look like a Cluster Head
Post by peacestock on Jan 9^th, 2007, 1:39pm

I keep hearing good things about Red Bull. I might just give it a shot.

Nice to see a fellow Calgarian on here. Don't see too many Canadian flags in the upper left corner. I will ask my doctor about the oxygen, although he wants me to give Topamax a try.

Just found out dr. is moving to Ottawa, so now I have to find another md/gp and tell them my life history again. In some ways I think the American system of health care and ours should merge. I love the "free" health care, but you also get what you pay for.

Peacestock

Title: Re: Starting to look like a Cluster Head
Post by seasonalboomer on Jan 9^th, 2007, 1:49pm

don't let them shelve oxygen as an "after we try topomax" kind of thing. screw that. Oxygen is the BEST tool for a vast number of us. It works independent of other meds and will not affect the Topomax effectiveness but WILL, in all likelihood, give you relief from hits. Doctors can't seem to get it into their skulls. Oxygen plus other things, not other things and then we try oxygen.

shame your doctor into giving it to you. why would he deny the best tool in the bag. if he wanted a house built would he deny you a hammer? shame shame shame.

i get excited about this issue because i went through a battle with my doc and finally had to really have a conflict with him, and in his shame he gave me the prescription. and I took and am living happily ever after.

scott

Title: Re: Starting to look like a Cluster Head
Post by Margi on Jan 9^th, 2007, 1:51pm

well, good luck finding another doctor in Calgary. They're a dying breed. You can try the CRHA website for a list of GP's taking new patients. You can also go to a walk-in and ask for a referral to the headache clinic at the Foothills. We have seen Drs. Becker and Eloft there - they are the ones who finally did prescribe oxygen. Long waiting list but sometimes if you tell them you are a clusterhead and are desparate, they will try to get you in quicker.

Title: Re: Starting to look like a Cluster Head
Post by peacestock on Jan 9^th, 2007, 2:37pm

You are right. I do have to be the one in control of my health and not let the doctor piss around while he tries all these different things. It's my health and happiness at stake, not his.

I do get tired of fighting the good fight, though. I guess it's just easier to try everything they suggest until they finally come to the oxygen conclusion on their own. With my kidney stones I had to fight to get them to believe that I was in pain, then the ME trying to get them to believe there was something wrong with me, and now this (I hate sounding like "poor me"...someone slap me!)

*taking deep breath* I guess I have to get ready to fight the good fight yet again.

Peacestock
P.S. I gotta get into the headache clinic as I now get three different types.

Title: Re: Starting to look like a Cluster Head
Post by cootie on Jan 9^th, 2007, 3:02pm

Um....Um.......didn't I read that tomomox also causes stones ? Anyhow......I have had 4 docs in the past couple of years (I'm a supporter with my own issues but need to keep a good doc on hand for me and for Brad that is a ch'r)....they all keep quitting there practices and moveing out or state or town ! So I been stickin with new docs that come into the clinic and so far got lucky I like the newest of new ones real well. But.....he is only predicted to stay 4 years if he can stick it out. This is gettin REAL scarey !!!!! The wrath of the bigger Cleveland clinic docs are runnin town docs out of there own town. I don't want to drive HOURS to a docs office Pam

(I don't drive in bad weather....too many hills to climb)

Title: Re: Starting to look like a Cluster Head
Post by Charlie on Jan 9^th, 2007, 8:08pm

http://www.netsync.net/users/charlies/gifs/spock eyebrow.gif

Charlie

Title: Re: Starting to look like a Cluster Head
Post by peacestock on Jan 10^th, 2007, 1:21am

Charlie,

EXACTLY! I look just like that little smiley face! Laff!

Peacestock

Title: Re: Starting to look like a Cluster Head
Post by BarbaraD on Jan 10^th, 2007, 4:48am

Peace

Get some Red Bull - chug-a-lug it when the CH first hits.
Get some cranberry pills for the stones - it does help - take enough to do some good.

Coffee, coffee.

And don't let them put you off the O2. For most of us it's better than meds.

Melatonin at night will help (most of the time) to get that extra 1/2 hour sleep.

Hope this is a short cycle for ya

Hugs BD

Title: Re: Starting to look like a Cluster Head
Post by nani on Jan 10^th, 2007, 9:17am

Hi peacestock. Cootie is right about Topamax and kidney stones. I wouldn't try it if I were you.
There are other preventatives that are safer for you to try. Look into verapamil, and lithium.
pain free wishes, nani

Title: Re: Starting to look like a Cluster Head
Post by kcopelin on Jan 10^th, 2007, 9:45am

Ditto on the Topamax-kidney stones are a side-effect and many people get them-if you already have a problem with that it would be a bad idea, IMHO.
Good luck!
PFDAN y'all
kathy

Title: slightly worried
Post by pubgirl on Jan 10^th, 2007, 6:35pm

Peacestock.

I am posting this here as well as elsewhere as I am slightly worried by other posts of yours and you have posted here (which isn't the best place to talk about CH itself!) so here goes:

You said on another post:

"I do get more than one head ache, of that I am sure. I get migraines - the kind that causes headaches, and also the kind with no headache but it looks and feels like I have had a stroke"

Could you explain what you meant by the "stroke" comment? I am not being nosy, there is a reason for the question.

You also said:

"I have never tried any meds for my clusters. As noted, they come and go so fast, I just wait them out"

How long do you usually have to wait?

I promise I am only trying to help here.

Wendy