Click this link to read a post I like on the clusterheadaches.com message board...

Joshl924

CH.com Junior

Offline

I Love CH.com!

Posts: 84

need advice, everything has changed
Apr 17^th, 2011 at 9:20pm

So .....

I know I have a tendency to be long winded so I will keep it short and sweet

Ever since I did a 10 day taper of Prednisone, I just have a constant headache... Its like a shadow cluster vice like feeling that shifts in the manner that it feels...

I sometimes get the homer syndrome as well... my eye lid started to droop once when I wasnt even doing that poorly

OTC pain relievers work(ed) but a new doc I have been seeing that I was sort of forced into going to has me on indomethicin which means I cant take any OTC or even vicodin

Has anyone had this... Literally a constant headache somewhat low level pain.

Ive taken zomig once or twice when I was going out. it helped on 2 occasions and didnt work at all on a 3rd

May try imitrex as an experiment tmw.

I know I should be thankful for not getting major hits like I was, but....this is in certain ways worse becuase it is just constant.

Should I go on prednisone again? is it possible it could get knocked out totally?

anyone heard of this or dealt with this.... ?

I feel like its murphys law over here

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Skyhawk5

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1320
Ypsilanti, Mi. USA
Gender: male

Re: need advice, everything has changed
Reply #1 - Apr 17^th, 2011 at 11:21pm

At my cycle peak, during uncontrolled, fullblown Kip-9-10, I sometimes get what I call the afterburn, K-5-7+, that lasts for days and once 9 days.

O2 works for me on these but uses a lot of O2, but for me lower level O2 helps with this. Just VERY frustrating. Then it abrubtly stops. I have not found any drug that stops this for me.

Prednisone is very helpful, but it can be quite dangerous at high, prolonged doses, just be aware. I've used Pred many times, to get me thru Funerals, weddings, and one trip to Vegas.

After many years of on cycle use, I developed a problem with my blood work, I was watched for Cancer for over a year, because my counts were so far out of whack..

Hope this helps, Don

Back to top

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

IP Logged

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: need advice, everything has changed
Reply #2 - Apr 18^th, 2011 at 8:47am

Josh, I'm still not clear on whether you've tried high flow O2 with a nonrebreather mask or not. Have you? And why not try imitrex, or migranal, or DHE45 injections? Or olanzapine? You still have a number of abortives avaialbe. Like Don, I've experienced the constant "background" headache which O2 will eliminate until it returns and I'm back on the O2. I do go through quite a lot of it, but it's better than feeling miserable. I have noticed an energy drink coupled with O2 tends to be more effective at this than O2 alone. Blessings. lance

Back to top

IP Logged

krys

CH.com Junior

Offline

I Love CH.com!

Posts: 44
DC/VA

Re: need advice, everything has changed
Reply #3 - Apr 18^th, 2011 at 9:24am

my husband has had a constant headache since a few days after he started a prednisone taper in mid-feb (second week of his cluster headaches). he described it as between 6-7 on the pain scale, and constant, it hasn't gone away for one second since it started in feb. it's gotten worse in the last week and is now between 8-9 on the pain scale; oxygen hasn't helped, dhe hasn't helped, percocet or dilaudid take the edge off a little but the pain still remains (and 48 h ours later we're back in the ER needing more narcotics). he was on indomethacin to rule out hemicrania continua a month or so ago, but the headache was both sides then..and now it's just one side, same as the attacks. he just started prednisone again last week (on the second day of the higher pain) and it hasn't helped so far...

(not that any of this helps except to know someone else is dealing with the same thing.) the doctor has mentioned hemicrania continua, but said he can't take indomethacin while taking prednisone..and has also mentioned new daily peristent headache (which..it doesn't look like there is anything that will help).

Back to top

IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: need advice, everything has changed Reply #4 - Apr 18^th, 2011 at 9:55am I also battle strong shadows, sometimes for weeks at a time. The droopy eye is there too. O2 chases them away for a bit but they come right back. Red Bull and Excedrin Migraine helps a little too. Pf wishes, Jeannie edited for wording.
Back to top	« Last Edit: Apr 18^th, 2011 at 12:31pm by Jeannie » "It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: need advice, everything has changed Reply #5 - Apr 18^th, 2011 at 10:04am Yes Ive had the all day shadow. Are you positive it's a shadow and not migraine? Is it really dull and painful, wrenching? We can get both. Why are you taking indomethacin? did the doctor give you a rationale? Anyway take a breath and live
Back to top	I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again. IP Logged

ClosetCHer

CH.com Junior

Offline

Posts: 52
United States
Gender: male

Re: need advice, everything has changed
Reply #6 - Apr 18^th, 2011 at 12:04pm

I've never taken prednison or any other prescription med for CH, but I do have long shadows. Just in the last few weeks I've had shadows that lasted the entire time I was awake, which isn't fun but better then a CH. On other days, I won't have any shadows or a shadow that will last an hour or two. This is the first cycle that I've been having shadows this long.

Back to top

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: need advice, everything has changed
Reply #7 - Apr 18^th, 2011 at 1:37pm

ClosetCHer,

Do either of the ICHD II headache classifications ring a bell?

4.7 Hemicrania continua

A. Headache for >3 mo fulfilling criteria B-D
B. All of the following characteristics:
1. unilateral pain without side-shift
2.daily and continuous, without pain-free periods
3.moderate intensity, with exacerbations of severe pain
C. At least one of the following autonomic features occurs
during exacerbations, ipsilateral to the pain:
1. conjunctival injection and/or lacrimation
2.nasal congestion and/or rhinorrhoea
3.ptosis and/or miosis
D.Complete response to therapeutic doses of indomethacin
E. Not attributed to another disorder

4.8 New daily-persistent headache

A. Headache for >3 mo fulfilling criteria B-D
B. Headache is daily and unremitting from onset or from
<3 d from onset
C. At least two of the following pain characteristics:
1. bilateral location
2.pressing/tightening (non-pulsating) quality
3.mild or moderate intensity
4.not aggravated by routine physical activity
D.Both of the following:
1. not >1 of photophobia, phonophobia or mild nausea
2.neither moderate or severe nausea nor vomiting
E. Not attributed to another disorder

Take care,

V/R, Batch

Back to top

« Last Edit: Apr 18^th, 2011 at 1:45pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

Joshl924

CH.com Junior

Offline

I Love CH.com!

Posts: 84

Re: need advice, everything has changed
Reply #8 - Apr 19^th, 2011 at 11:13am

Ill try to address each question

Wimsey: I cant get the damn (insert 58 curse words here) mask to work honestly.. It wont let me suck back in without creating a vaccum..... thinking of going back to crappy mask at least I can get some 02 in me... I really dont know how to use the damn thing

batch ive read about that... but I was having traditional CH for awhile and in fact woke UP WITH HIT this morning prob a 6-7.. so Im back to good ole standard CH.

noticed myself stopping looking both ways before I cross the st....

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Joshl924 CH.com Junior Offline I Love CH.com! Posts: 84	Re: need advice, everything has changed Reply #9 - Apr 19^th, 2011 at 11:16am yea... Ive been on indo for almost a week and other than my inability to take advil tylenol or excedrin on it, it seems like a huge waste of time... as the teenagers say FML
Back to top	IP Logged

Potter

CH.com Alumnus

Offline

Team MOOSE DROOL Stinky
Stuff on a Hook Prostaff

Posts: 3600
Blgs.Mt.
Gender: male

Re: need advice, everything has changed
Reply #10 - Apr 19^th, 2011 at 11:19am

Joshl924 wrote on Apr 19^th, 2011 at 11:13am:

Ill try to address each question

Wimsey: I cant get the damn (insert 58 curse words here) mask to work honestly.. It wont let me suck back in without creating a vaccum..... thinking of going back to crappy mask at least I can get some 02 in me... I really dont know how to use the damn thing

batch ive read about that... but I was having traditional CH for awhile and in fact woke UP WITH HIT this morning prob a 6-7.. so Im back to good ole standard CH.

noticed myself stopping looking both ways before I cross the st....

That's impossible, try turning the oxygen on, it must keep the bag full.

Potter

Back to top

IP Logged

Skyhawk5

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1320
Ypsilanti, Mi. USA
Gender: male

Re: need advice, everything has changed
Reply #11 - Apr 19^th, 2011 at 10:54pm

Josh, we need to get that O2PTImask going for you. Please read thru the link below to the section that shows the O2PTImask. There are photo's of the mask assembled, put it together like the photo's.
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

If need be I'll talk you thru it on the phone, just let me know.

Don

Back to top

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

IP Logged

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: need advice, everything has changed
Reply #12 - Apr 20^th, 2011 at 8:16am

Josh, what flow rate does your regulator permit? I know when I was "stuck" at 12-15lpm I also emptied the bag because I was breathing so rapidly and deeply. When I first hit the O2 I need a 25lpm flow just to keep the bag inflated between hits. I have also found the demand flow valve works best when coupled with the non rebreather mask. Take Don up on his offer. He and Batch were great help to me not so very long ago. And so was Brew; he wouldn't be here if he didn't care. Some use, as do I on my E tanks, a T-connector to be sure I get full use of the O2 and do not have to bother with a mask. Get on this, Josh. Proper technique and equipment are vital to O2 effectiveness. Blessings. lance

Back to top

IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: need advice, everything has changed Reply #13 - Apr 20^th, 2011 at 9:46am Same thing was happening to me at 15lpm. I was sucking the bag flat then having to wait for it to refill. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Bought myself one of these and it has made a world of difference. ( Thanks Racer ) Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Joshl924 CH.com Junior Offline I Love CH.com! Posts: 84	Re: need advice, everything has changed Reply #14 - Apr 20^th, 2011 at 12:24pm yes... 15 is the highest my regulator permits.... So you guys are saying its not the mask its the flow rate?
Back to top	IP Logged

Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: need advice, everything has changed Reply #15 - Apr 20^th, 2011 at 12:41pm Does the bag fill? Potter
Back to top	IP Logged

Joshl924 CH.com Junior Offline I Love CH.com! Posts: 84	Re: need advice, everything has changed Reply #16 - Apr 20^th, 2011 at 1:17pm kinda.... I dont know what the deal is.. also the last time I got it refiled, the flow got alot slower.. but the gauge said it was fine and when guy lifted it off a bunch came out the O2 is giving me a headache joking...
Back to top	IP Logged

Click Here to visit the CH.com Facebook page!

Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: need advice, everything has changed Reply #17 - Apr 20^th, 2011 at 1:51pm Crank it up. Potter
Back to top	IP Logged

Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: need advice, everything has changed Reply #18 - Apr 20^th, 2011 at 3:41pm Maybe the regulator got turned down during the tank change? Try it on 15lpm, that's where you should start, for faster aborts. Check for bent O2 line. It's best to do these things when not getting hit. Don
Back to top	« Last Edit: Apr 20^th, 2011 at 3:43pm by Skyhawk5 » Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: need advice, everything has changed
Reply #19 - Apr 21^st, 2011 at 8:35am

Joshl924 wrote on Apr 20^th, 2011 at 12:24pm:

yes... 15 is the highest my regulator permits....

So you guys are saying its not the mask its the flow rate?

We're saying the flow rate is probably too low although even at 15lpm, the bag should fill up like a balloon if you aren't breathing through it. The mask needs to be a nonrebreather type or you will be mixing room air with pure O2, messing up the O2's effectiveness. You either make up a couple of valve flaps to cover the two holes on your mask, or cover them entirely. Hope this helps. lance

Back to top

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!