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        Cluster Headache Help and Support >> Cluster Headache Specific >> CH changes...anyone relate?
        
(Message started by: Asia on Nov 6^th, 2006, 11:26pm)

Title: CH changes...anyone relate?
Post by Asia on Nov 6^th, 2006, 11:26pm

Hi, I'm very new here, but I wanted to jump right in and ask some questions - so please excuse me if any have been asked before!

I'm in an unusually long cycle. I had them for two months, left side, 10's daily, then they tapered off. I thought I was fine for at least another year...three weeks later, they were back on the left side.

It's been two months now...the 10's have gotten less frequent, but I'll see a 7 or 8 about three times a week, a 1-4 the rest of the days, which is actually great (that sounds crazy, but it's true). Now, however, when the HA is gone, I will still have a sharp pain on the bone(?) behind my ear almost all the time. ANyone experience this?

I don't have insurance, so I got Prednisone from an ER doc (reluctantly) and just started 20mg 2x daily. The doc just wrote the script...I don't know if he actually knew what a CH dosage was. Is this what some of you take? He also gave me Hydrocodone, which does very little, but I take them anyway hoping it will take the edge off 10's.

I don't mean to ask for medical advice, but after reading what's here, I know that you folks are in my little world. Please let me know of any resources you may know of in Texas...I still haven't even learned how to navigate the interstates *smile*.

Thanks!

Title: Re: CH changes...anyone relate?
Post by G on Nov 7^th, 2006, 1:05am

Hi,I've been getting CH's for about 17 years left side only,kip 10's were all i would ever see for many many years,now i'm lucky ....they are not as intense ..so far ...but it seems they never want to leave, they started in the beginning of oct.and will probably last till feb. I get shadows all year and cluster pain can come at any time during the year,not just set cycles for me,right now the intense pain is lasting about 3-5 hours then they go to shadows kip4-6 is my guess? I get pain in the bone in front of my ear as well as what feels like my bones being scraped during shadows,no meds for me.although i've been slamming coffee as of late and plan to get a new 02 tank,i'm getting afraid to leave my house anymore,seems like ten min into my drive i'm pulling over for 4 hours >:( during intense pain it seems to be very irradic of late from eye to temple to jaw,even back of my head and neck ,only on my left ,i think i'd rather have 3-4 kip 10's a day lasting 45min a pop than it dragging out ....although i don't think theres much difference between my 8-10's just how i can handle them ,before i go ape shit, sorry didn't mean to turn your post into my rant :-/ hopefully I answered one of your questions ;;D

Title: Re: CH changes...anyone relate?
Post by Asia on Nov 7^th, 2006, 6:42am

lol...I'm not sure if you did...but so what? smile

Maybe I can give you some feedback. Here are some of the 101 things I do at different times that help in little ways when I have no meds.

1. Fresh air: Even though it can get uncomfy in summer, I kill the AC. For some reason, this helps me feel a little better. I open windows, try to even sit outside when I'm under a kip5.
2. My little cold tricks: Keep a bottled water in fridge to roll over my face. Fridge keeps it at a perfect, usually bearable temp, it's convenient and quick. A soother even if it doesn't stop it. Also, get zip lock bags, fill with about a cup of water, and add ice cubes to the temp you want. Better to me than towels that get warm or ice that burns and lasts longer.
3. For some bouts, I tried hot towels. Think it was a good distraction, but soon I realized it wouldn't work when the HA felt a certain way. The distraction was more in the activity...sitting on edge of tub and constantly re-heating towels.
4. Breathing techniques: More than anything, I need to calm down, not start crying or pace too much. I've taught myself to take measured deep breaths and count to 100. Takes a crapload of concentration and practice. But it helps a lot in not starting to sink into that depression mode and freaking out.
5. Get some kind of massager. Even when I don't have the meds, walking around the house tense is always a sure-fire way to start having 2-3 a day for me. So I try to keep my muscles loose, be conscious at all times when I'm tensing them, and after a bout is over, I use a massager to relax and make the most of that off time.

Hope that helps...I don't know about you, but I live on hope most of the time, and will try something new if it gives me a little bit of relief when it counts.

Title: Re: CH changes...anyone relate?
Post by AussieBrian on Nov 7^th, 2006, 7:10am

I"ve been duelling with this dragon for thirty years, mate, and never gone two rounds that were the same. One a day, six a day, left side, right side, backside inside out. The only consistancy is the total lack of consistancy.

Just reading the way you attack it, though, it seems to me you're on entirely the right track.

Many people get terrific relief from cooling it down while others recoil in terror at the thought and heat it up. Me, I do both and commonly at the same time. (If I can't beat it, I'll confuse it!) A common saying aroud here is, "Frozen peas are my friends" and it's also remarkable what a microwave will do to a damp towel.

Interesting about you're craving for fresh air and wonder if it's not your body's way of telling to read more about the use of oxygen in this fight, but it seems to me you've already harnessed the greatest weapon of all - attitude!

You're a victor, not a victim, and that'll carry you further than all the medications under the sun.

Here's to a new day tomorrow,

Brian down under.

Title: Re: CH changes...anyone relate?
Post by chewy on Nov 7^th, 2006, 7:58am

Quote:

I don't know if he actually knew what a CH dosage was.

He dont. A prednisone taper is the usual regimen.

Quote:

He also gave me Hydrocodone

Can trigger.

Title: Re: CH changes...anyone relate?
Post by MJ on Nov 7^th, 2006, 1:08pm

on 11/07/06 at 07:10:33, AussieBrian wrote:

it seems to me you've already harnessed the greatest weapon of all - attitude!

You're a victor, not a victim, and that'll carry you further than all the medications under the sun.

Brian down under.

Love that saying.

Thats the key ingredient to dealing with CH.

The pednisone tapers work for a lot of folks, if nothing else the pred may give you a temporary break.

If the oxycodone doesnt help I would drop it as these type drugs have a tendency to make things worse for many.

Title: Re: CH changes...anyone relate?
Post by Bob_Johnson on Nov 7^th, 2006, 2:08pm

Since he admits to no knowing about CH, give him this article:

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: CH changes...anyone relate?
Post by BB on Nov 7^th, 2006, 8:07pm

on 11/07/06 at 07:10:33, AussieBrian wrote:

If I can't beat it, I'll confuse it!

This is the most novel coping technique I have heard of and it sounds good to me, thanks Brian :).

However, since I dont have CH, I will apply this to dealing with life itself ;;D

Folks, from now on, if I confuse you, blame Brian! 8)

Painfree wishes to all

Annette

Title: Re: CH changes...anyone relate?
Post by mickey on Nov 8^th, 2006, 7:24pm

I have been suffering from these damn things for about 15 years and every cycle has been different for me. I have had them on the left I have had them on the right I have even had cycles where they are mostly on one side but one will pop up on the other side here and there. Every cycles triggers are different to. somtimes all I have to do is pop my neck thinking I am releasing pressure and that starts the headache. some I can drink all the alcohol I want but most if I have one beer thats all it takes. but all the triggers are diffrent. treatments are allways diffrent to. some cycles I like ice some I like heat I have even tried filling one sink with ice water and one with hot hot water and proceded to dunk my head from one sink to the other. I have tried all of the medications. Depacote, Topamax, Sansert, hydrocodone, Percocet, O2, Ralpak, and a lot of other stuff I can't even remember. But the only thing that seems to help is Imitrex. only the injectable. I take so many of them I get headaches from it. Cycles last anywhere from 3 weeks to 3 months. and i have had some cycles that i have 1 headache a day some that I have 4 to 5 a day. You have got alot of info here try it. DR's are idots none of them seem like they want to cure the problem they just want to guess at what to give you. I have seen 6 diffrent nuros now I just go to my family doc tell him what I need or might want to try and I am good to go. hope this helped. By the way what part of TX are you in ? I know some good doc's in Dallas.

Title: Re: CH changes...anyone relate?
Post by paul2006 on Nov 8^th, 2006, 9:31pm

on 11/08/06 at 19:24:07, mickey wrote:

But the only thing that seems to help is Imitrex. only the injectable. I take so many of them I get headaches from it.

My neuro says that if you have CH, Imigran [imitrex] injections do NOT cause HA's. If you have ANY other forms of HA's or migraine, the injections DO cause HA's.

You can only have 2 shots a day in any case...