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        Cluster Headache Help and Support >> Cluster Headache Specific >> strange cycleI
        
(Message started by: Jimmyl on Feb 20^th, 2007, 11:46pm)

Title: strange cycleI
Post by Jimmyl on Feb 20^th, 2007, 11:46pm

I thought I was coming to the end of my usual 6 - 8 weeks. I tapered off the verapamil, discontinued the oxygen. And things went ok for about a week. I had a headache start in the same general area that the clusters do, only this time I could feel my pulse beating in my ears, and my teeth were killing me. This never did get to a level of pain that was horrible, but it was uncomfortable. It was gone in about a 1/2 hour. Two days after that I was awakened by that familiar cluster pain but it never got bad either. I did make a dentist appointment and he put me on and anti-biotic for an tooth infection. That night I had three painful awakenings that were very cluster-like. I have gone to my md and he believes that I could have sinusitis. What I don't understand is.....if this is sinusitis, should it hurt like hell? I had an old tank of oxygen in my basement that I keep as a backup. I set it by my bed and sure enough I was awake at 1:00 with the pain. The oxygen worked in about 7 minutes. Now I am really perplexed, does oxygen work on sinusitis? I'm thinking that my clusters have returned (or didn't run their full cycle), and I have some sinus problem with them. What worries me most.....this is just different enough to make me think that the clusters have gotten worse.

If any of you have had sinus related problems I have a couple of questions for you.

Does it only hurt when you lay down or bring you out of a sleep like a cluster?

Has oxygen ever helped the pain from sinusitis?

Thanks so much,

JimmyL

Title: Re: strange cycleI
Post by Guiseppi on Feb 21^st, 2007, 9:18am

The only answer I have for you is never get comfortable with a routine because the beast will change. I went clockwork 12 weeks on 12 weeks off for over 15 years, with absolutely no night time wake up hits.

Then it went haywire, I had an 8 month cycle that kept starting and stopping and the dreaded night time hits started. I hope it is just a touch of sinus trouble for you but the oxygen working makes me wonder. Good luck and I hope it's a short lived problem.

Guiseppi

Title: Re: strange cycleI
Post by Mare on Feb 21^st, 2007, 11:00am

Hi Jimmyl, sorry to hear you're still in pain. I'd like you to remember that some of us here (myself included) were originally diagnosed and treated for sinus conditions. For me this was in the early 80's and I wasted 6 weeks on sinus meds that did nothing but make me sick.

My CH side of my face is sensitive to cold even when not in cycle, I have to be very protective of my ear on that side as even a warm breeze in the summer will give me an ear ache.

I should also tell you that while I'm having a HA, my teeth hurt like heck on that side and the amazing thing is............I have dentures!!!! Ok, ok, I know it's the nerve endings but it still makes me giggle to have a "toothache" where I have no teeth.

I said all that to say that maybe you're not completely out of cycle yet and the sinus thing is just confusion.

Wishing you pain-free days and nights.

Title: Re: strange cycleI
Post by Mattrf on Feb 21^st, 2007, 2:17pm

Hay Jimmy, I am a lifelong Sinusitis sufferer.
There are a couple things that might help you determine if it is sinus or not, I have always gotten relief from sinus pressure by soaking a wash cloth in very hot water, as hot as you can stand it and put it over the eye on the side that hurts. The heat causes an expansion of the sinus cavity lessoning the pressure and giving temporary relief, can’t tell you how many times I have stood in the shower with the water on as hot as I could go and drained the hot water heater. One other thing I do to test is plug your nose and mouth and blow, this will force pressure into the sinus and if there is an infection you will typically be awarded with a very sharp pain in the effected eye.
No guarantee these will work for you but they do for me.

Good luck hope you get some PF time soon.

Matt

Title: Re: strange cycleI
Post by starlight on Feb 21^st, 2007, 3:47pm

Sinusitis should not awaken you from sleep in the manner that you are describing nor should O2 treat it.
You may have discontinued the verapamil too quickly. It needs to be stopped a full 2 weeks after your cycle would have normally ended if in fact you were feeling no head pain at that time. You can't stop taking it judging on when your cycle would normally end. If you were feeling no head pain at the time when your cycle would have normally ended you need to add two weeks on before you discontinue.
If you feel head pain at all--twinges, shadows or actual headaches you need to wait a full two weeks after any head pain has completely stopped otherwise there is a great likelihood the headaches will start up. Good luck. I hope you feel better soon.

Title: Re: strange cycleI
Post by Jimmyl on Feb 21^st, 2007, 6:10pm

Thanks for the replies. I guess the cycles have gotten longer. I'm going back on the verapamil and see what happens from there.

Thank Starlight for confirming what I was thinking too. Sinus shouldn't wake you up like that.

Thanks again,

Title: Re: strange cycleI
Post by Wayne_B on Feb 22^nd, 2007, 9:27pm

Hi Jimmy,
I'm a 40 year survivor/the wife is a 40 year supporter of
this *&%*%$$ beast. I too was diagnosed with sinus/
teeth/nerve damage/ and treated for same by at least
10-15 so called doctors. Back when it first started, I was
18 and several doctors tuned in on the sinus thing. The treatments made the beast very, very pissed off. Another doctor wanted to extract several teeth......no way.....another doc. along the way finally defaulted to
"some type of allergy" and I took the shots until something caused a hit......finally, years later, a doctor put me on Ergot. I took the damn stuff until my hands and fingers went numb.....the beast just seemed to set the pole higher. Finally, I connected with a doctor Gold.
He had just written a book on clusters or co-authored it or did research for it....anyhow, this guy knew my beast inside and out.....we spoke at length and logged in to a
round of Calan (Verapamil) and O2 and prednisone program.
For me here is 40 years of lessons well learned.
My cycles happen every year in two distinct bouts. Jan...Feb. and again he revisits in Sept...Oct.
I use to get a warning that the &%&^%beast was about to return.....lots of sneezing two weeks prior,
upset stomach for no reason...more at queasy.....
some strange glitzs in the eye sight, etc.etc.

If I started the Calan during this pre-visit time, I can reduce the level of the bout, if I start the Calan at or on the first hit, it takes several days or a week or two to begin helping.....the Calan works the best of all so far.(Tried, Inderal no work for me......Calan once in your system is flushed out fairly quickly......ie, my doc. told me
to reduce the intake for 3 weeks before going to zero....during which time I look for any signs of the return of anything....and yes you can have a hit or string of hits begin if you get off the Calan too quickly or reduce before the cycle is truely over.....check with your doc. But over the years I have learned to give it a couple of weeks after "my system" feels like he has left town...then I to the taper off thing watching for any signs of the &^%$&$&^ doing a 180. Good luck with the Calan. Sience is beginning to work on stopping a given hit...but they are miles from reviewing the causes.

Title: Re: strange cycleI
Post by Jimmyl on Feb 26^th, 2007, 8:51am

Well I guess these are clusters in a slightly different form for me. I have a constant ache around and just below my eye on my cluster side. It never really hurts bad, but then never goes away either. I have been getting nightly hits that the oxygen takes care of, but none during the day. I have had clusters all my adult life, but these have been so different that it has me questioning everything I thought I knew about them.

This constant ache around the eye....anyone else have this?

In all my other cycles this never happened. And these have gone on now for almost 12 weeks, the first six wks. were the usual for me. Now this. And this has never happened before.

JimmyL

Title: Re: strange cycleI
Post by Mare on Feb 27^th, 2007, 12:07pm

Jimmy, I have this right now for the first time too. I'm assuming (yes, I know) that this is what everyone here is calling shadows. I don't remember this happening to me before.

It is a pain in the arse and a constant reminder that the beast is lurking. I think I'm at the end of my cycle and if these "shadows" are as bad as it gets right now, I'll be more than happy. If they continue for a long period of time then I don't know, how long do these things have to go on before one is considered "chronic"??