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Jangly Mark

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Is this unusual?
Oct 2^nd, 2010 at 9:23pm

Hi, all

I got over my late July/early August bout

I should (if previous years are any indication) be CH free until mid-late November

I am, however, experiencing something that I've never experienced before...

Firstly, I got a couple of VERY mild CH attacks out of season...the worst, I would describe as a kip 2, lasting just over 40 minutes - without any medication. A couple of kip 1's, but, not enough to disrupt anything and nothing that would stop me sleeping.

I thought I was in for another bout, out of season (for me). Thankfully, it would seen that is not the case.

BUT....it would seem I am getting shadows...most notably the pain behhind my eye, but also, the vein on the side of my head being a little bit 'up'.

While alcohol has never been a trigger for me (doesn't seem to affect an attack eithor way - I've tried both drinking my way out of pain (it does NOT work) and not drinking at all), the tightness in the eyes does seem to be made a little worse with a drink. If I don't drink, it's still there, but, slightly less promounced.

Also, it's really draining me. I always assumed that when I was in a CH cycle, I was so tired as they happen at night for me, so, put it down to simple lack of sleep.

Having said all that, I am not getting headaches. All the usual signs are there...if I was getting these signs when in cycle, I'd expect a kip 8-10.

Usually, when I'm in remission (usually about 45 weeks out of 52), there are no symptoms at all.

Is it unusual to get shadows without headaches? I'm genuinely baffled by this...I've been suffering for over 10 years and this is a new one on me....

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« Last Edit: Oct 2^nd, 2010 at 9:24pm by Jangly Mark »

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bejeeber

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Re: Is this unusual?
Reply #1 - Oct 2^nd, 2010 at 11:25pm

I believe it is very common to get shadows when "out of cycle" without full on CH hits.

it certainly is for me.

And it doesn't sound particularly surprising that things would change after 10 years. As a 30+ year CH'er I can tell you that this pesky beast can lay some new surprises on you even after decades of consistent behavior. Angry

The best preventative for mild out of cycle shadows that I have found is a non intoxicating 50 seed dose of Rivea Corymbosa.

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« Last Edit: Oct 3^rd, 2010 at 8:44pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Headache Boy uk

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Matthew ch 11 v 28

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Re: Is this unusual?
Reply #2 - Oct 3^rd, 2010 at 12:13pm

Being as I have only had one cycle so far I don't have any history to go on but ever since that cycle ended last December I've had shadows several times a day every day , some really mild an some may be hitting a k3 or4 .

If the shadows get really annoying I can usually see them off with a can of red bull .

From what I've read on here this is not unusual and the beast often changes tack just to spite you .

God bless

Nigel

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You can't speak a kind word too soon, For you never know how soon it will be too late.

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Lauren17

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Re: Is this unusual?
Reply #3 - Oct 3^rd, 2010 at 1:18pm

Sorry the beast is knocking. One of the most important things I've learned here in the short time my husband and I have been on this site is that change is the name of the game with these things! Hopefully it's just off season shadows that don't progress. Stockpile your arsenal to be prepared when it does raise it's ugly head, though I sincerely hope that is a long long time from now! Keep us posted!

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Never, never, never give up.

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Is this unusual? Reply #4 - Oct 3^rd, 2010 at 6:54pm G'day Jangles, and you've just described what we call phantom CH. Those of us who get them know exactly what you're talking about and everybody else thinks we're completely mad.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

MJ

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Re: Is this unusual?
Reply #5 - Oct 4^th, 2010 at 1:14am

Silent attacks, phantoms. They are normal for some of us Jangly.
I can go through several months of these whithout having full on hits with similar frequencies as regular hits.
You get to see them as a bit different than in cycle shadows though.

AussieBrian wrote on Oct 3^rd, 2010 at 6:54pm:

G'day Jangles, and you've just described what we call phantom CH. Those of us who get them know exactly what you're talking about and everybody else thinks we're completely mad.

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MJ

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Agostino Leyre CH.com Sponsor Offline "Hit like a phillips head into my brain." Posts: 3803 Madison WI USA Gender:	Re: Is this unusual? Reply #6 - Oct 4^th, 2010 at 10:48am The last 6 years or so I've been having shadows all the time. It was a little frustrating at first, because I thought I had a cycle coming on but now I just "live with it" and take excedrin when I have to.
Back to top	Triptans cause increased number of hits and increased intensity. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.&& IP Logged

shaggyparasol

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Re: Is this unusual?
Reply #7 - Oct 4^th, 2010 at 8:05pm

Hola everyone. 2 comments:

First for any excedrin users (since it came up in the last post). I used to swear by the stuff until I learned that of the 3 ingredients, only caffeine helped me. As excedrin is acetameniphen, aspirin and caffeine I believe that 2 of the 3 do not work for most of us. So taking excedrin will work for many of us, it is just the 65mg of caffeine per pill that is the winner. I switched to caffeine tablets several years ago when needed and it has worked well. Coffee, tea and soda work well for me too, so I don't always need the 200mg of the nodoz/vivarin pills. So if this seems true for ya'll, save your stomach and skip the excedrin.

numero 2. This may not apply because I get random shadows and I am not sure if it is the same as phantom hits but....Once I started busting with psilocybes I have more frequent shadows between cycles. Used to be (before the mushroom medicine) I would have my painful 2 month cycle and not feel anything else until the next cycle started. Now I don't have the cluster cycle, but have random shadows at various times. Others have reported similar things once they medicate with various medicines.

Like I said, don't know if this is your case, but thought I would throw it into the mix.

Live long and prosper!

--Shaggy Angry

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Peter B

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Re: Is this unusual?
Reply #8 - Oct 4^th, 2010 at 9:17pm

'Phantoms' - I like that. I have described them as shadow shadows. I will sometimes get everything in the headache but the pain (and no one understands that but my neuro). Very light sensitive, runny nose, pressure (but no pain), find myself rubbing my head...

...strange, unpleasant feelings but hey, much better than with the pain too!

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Martin

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Re: Is this unusual?
Reply #9 - Oct 15^th, 2010 at 9:45am

Hi Mark,

Everything about clusters is unusual; people here have stories of how the CLUSTER ATTACKS change. I'm only 24, 2-years diagnosed with clusters, and every year mine are different. 17-20 years old, I would get them daily for weeks at a time, 21-22 I'd get 3 clusters a year, last year I had a 3 month bout with several a day, and this year....

I've been free for a year, but instead of new clusters starting up this September I've been having shawdows everyday. I'm drinking red bull and coffee, and the caffeine is either keeping them at shadows or clusters never were going to come; either way I'm happy my cycle's changed and my Oxygen tanks are still gathering dust.

Best of luck to you, hope the shadows are the worst you have to deal with.

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Joni

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Re: Is this unusual?
Reply #10 - Oct 26^th, 2010 at 2:50am

My cycles were the same way for 25 years...when they were over, they were over! Then a couple of years ago after a cycle, I have the same feeling you are describing for almost a year. I had CT scans, etc. and everything was fine. I started taking Verapamil in small doses twice daily and it is finally gone. I still take the prophylactic Verapamil dose...10mg Am and PM. Of course you know every person and every HA is different. Food for thought.

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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