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smt805

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Life and symptoms after cluster headaches
Oct 12^th, 2009 at 7:36pm

Hi Everyone. I am one of the very fortunate ones that has, after 33 years, stopped having my headaches. It's been 3 years without a headache and I feel like I've been reborn. The last 4 years of my cycles I found that oxygen worked to relieve my pain every time.

My main question that I'm throwing out there is: After cluster headaches go away forever, is it common for the symptoms change from pain and pressure to something else. I'm experiencing hot flashes (I'm a man), slight pressure and dull soreness behind my left eye, and feelings in my head similar to the feelings I got before having a full blown headache. My doctors don't have any ideas. Lots of tests and everything is normal. Any ideas? Thanks.

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JustNotRight

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Re: Life and symptoms after cluster headaches
Reply #1 - Oct 12^th, 2009 at 9:20pm

Welcome smt805 glad to have you here.

You'll have to bare with me as I am just coming off a CH hit myself at the moment.

It sounds as if you've been in remission for 3 years, there have been cases of remission and then years later the attacks come back. I am hoping that yours do not come back at all, but this may be something to discuss with your doctor.

I have had hot feeling and cold feelings before a CH hit at times, so that aspect I don't really thing the sex of the person matters. There may be others here of either sex who can coo-berate that hot or cold feeling as well.

I hope you stay pain free and please let us know what if anything happens.

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MJ

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Re: Life and symptoms after cluster headaches
Reply #2 - Oct 12^th, 2009 at 11:22pm

SMT
If the symptoms you experience last in time similar to a full on cluster then most likely they are whats called Silent attacks. All the symptoms but no pain. hot flash and cold skin in the normal cluster zones is a good indication.

There are a few of us here who suffer the same. They can be annoying. Try the o2 and see if it helps them.

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MJ

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bejeeber

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Re: Life and symptoms after cluster headaches
Reply #3 - Oct 13^th, 2009 at 1:23am

smt805 wrote on Oct 12^th, 2009 at 7:36pm:

...After cluster headaches go away forever...

Here's hoping yours are gone forever, but I'm afraid a 3 year remission is not a reason to absolutely assume that.

Still, it's fantastic to have some long remissions! I know. I started experiencing episodic CH 30 years ago, being hit every year for many years. Gradually I started having longer remissions between episodes. I'm at the tail end (I hope) of an episode right now after having a 7.5 year remission!! Shocked

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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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lorac

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Re: Life and symptoms after cluster headaches
Reply #4 - Oct 13^th, 2009 at 6:38pm

I had those same feelings for 2 weeks, just before my cycle started this year.
I am kicking myself, because I could have been taking a Prevent, or the rc seeds, or something, and maybe prevented my cycle from even starting. I just kept telling myself that it must be alergies or something. (maybe a little hopeful thinking, or just denial) Embarrassed

Now in Hindsight, It was just a 2 week oncoming of the beast.

If I could have a do over, I would have ramped up right then on some calcium, Magnesium, Kudzu, and Melatonin at least. And had I known more about the seeds, I would have done that before I got all the meds in my system.
Err on the side of caution, and prepair for the worst just in case.
I would deffinately have the O2 on hand at the least.

There is no cure for this mean ol beast....I was in remision for 7 years once.
Don't mean to bum you out, ...Just want ya to be prepared. Just in case. Good Luck
Hoping the best for you! lorac

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void

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Re: Life and symptoms after cluster headaches
Reply #5 - Nov 20^th, 2009 at 8:15pm

I do not want to be a downer, but I've been stable at 3-3.5 years remissions for 4-6(?) cycles now. Before that I had a long period that could perhaps could be called chronic with 2-3 hits 4-7 days a week, that started having remissions and then the remission became longer until I finally thought they were gone.

But.. even though I get frightened and scared and angry and everything else every time I realize they are back, afterwards I really have to be thankful and appreciate how fortunate I have been so far.

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Joni

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Re: Life and symptoms after cluster headaches
Reply #6 - Nov 20^th, 2009 at 10:00pm

Sounds like you are getting ready to start a cycle to me. That is how mine have done sometimes since I have been older (or they are older). I am 55 and they are 25. I have had remission for up to 3 years and people on this site have had much longer only to start again. Many years ago, doctors use to tell us we would grow out of them, but I don't get that sentiment anymore from them. You could say that the doctors of long ago were nicer and more optimistic and today's docs are mean and pessimistic, but I don't think that would hold water:) Really, I don't think anyone really knows, yet. I hope you never have another one!

I will tell you that my mother didn't have them for the last 10 years of her life (58-68) and my older sister's are farther apart and not as bad at age 62, but the jury is still out on my sister and I don't know what would have happened if my mother had lived longer because she did have, what she called, sick headaches during that time, more like a migraine.

I am very encouraged by this site, the OUCH site, and others that the knowledge is spreading. At least you can google it and come up with lots of links. We should take a lesson from the Autism Society...you have to spread the word to get help!!!

Good luck!!!
Joni

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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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Jrcox

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Re: Life and symptoms after cluster headaches
Reply #7 - Nov 21^st, 2009 at 11:30am

lorac,
I'm the same way. Over a two or three week warning usually. Sometimes longer so I get complacent. Denial sucks. I was totally caught off gaurd this cycle. I dance several nights with te beats this past cycle. But it's going away the same way it started. It sometimes helps me to just ignore it, keep moving. It j dwell on it to much I get really depressed. But that came with price. I was unprepared for the worst. Never ever again. I can be prepared and not dwell. Or can i? Any suggestions. This is my biggests struggle. 1 to 2 year remissions. It's tough to go that long and then WHAM. Party time! Lol.

Wish you PFDAN

Jrcox

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Life and symptoms after cluster headaches Reply #8 - Nov 22^nd, 2009 at 11:14am To survive and thrive with any chronic disorder, we must learn how to avoid the trap of chronic worry, fretting, absorption, angst.... Learn to deal with what IS--and then turn loose. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Sandy_C

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Re: Life and symptoms after cluster headaches
Reply #9 - Nov 22^nd, 2009 at 2:20pm

I began my episodic clusters at the age of 53, in 1999, and suffered cycles every 12 to 18 months, each cycle lasting from 8 to 16 weeks. I have been in remission now going on four years. Do I believe that my CH is gone, never to return? Not a chance. I keep my O2 ready to roll at all times. The tank is gathering dust from lack of use, but she's still locked and loaded.

If you are experiencing even the smallest symptom resembling going into a cycle, get your weapons ready for battle, and start the pre-war right now.

Don't get me wrong, I am not a pessimist, I'm just a realist. I know the beast may come back someday, and if he does, I'm ready. I don't dwell in the possibility, but I'm prepared.

Know, I mean really KNOW your own body and what it's feeling. Your body will never lie to you, but your mind might. Trust your body.

Sandy

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