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leftsideonly
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Hi my name is Andre, I want to thank you all so very much for taking the time to post your stories and advise. Before I found this site I thought I was the only one that really knew what "I" was going through. I read the opening page and callapsed in tears about a month ago. It was what I really needed to read right then as I was entering my 9th week of my most recent eposode.
My clusters first started about 10 years ago. Like many I was diagnosed with sinus headaches as I do suffer from hayfever in the fall and winter months. This is when I usually get my attacks is in the fall and winter. The eposodes last anywhere from a month to four months. I get headaches all day ever 2 hours that last from thirty minutes to just over an hour. They are more consistant with the two hour thing at night when I try to sleep.
My "Dance" goes kinda like this - I wake from a dead sleep to the violence of the demon raging in my head. I immediately begin squeezing on my head and grasping my neck and shoulders violetly. I usually feel a little sick to my stomach and my whole body shakes and trembles - much like a bad panic attack. I pace the hallway of my house trying not to disturb my sleeping family while I suck on popsickles or ice. I find that the more intense the pain the fast I will walk - as though I could out run the pain or run toward its relief. If I am very lucky I throw up from the nausia and the headache sometimes subsides afterwards.My wife says I look like I'm drunk the way I stumble around in the darkness pacing the hallways. She feels so very helpless as I have told her to stay way from me during an attack. I feel very embarrassed about my behavior during the attacks. My children unfortunately, have seen me in a pile on the floor squeezing my head and crying out in pain. Not a proud moment for a strong and proud father and husband. The head squeezing goes on until the headache mysteriously disappears as quickly as it came on.
My skull is usually bruised for about a month after the eposode subsides. I try not to squeeze my head so hard but the panic and pain make me. I lost a total of 25 lbs. during this last eposode from being sick so much and not wanting to eat
I have found some releif from Zomig in the past. I used to get about 24 hours without a headache but this last time I was getting about 12 - 15 hours headache free. I take it during the night so I can Sleep (sometimes) but I suffer during the day when I work then. My physician told me that I woukd be better off without taking a thing because it will cause the headaches to go away quicker. He says they will go away in about a month if you don't use meds and won't return as soon. I don't know about that but I can assure you he has never suffered through one of these headaches to say "just deal with it. " I am self employed so I self insure which usually works just fine but the Zomig costs about $25.00 a pill. You do the math its like having a $200.00 a week drug habit -I joke with my wife and tell her shes married to a drug addict for the length of the headaches. I spent about 2000.00 for meds this last time. I'm not a rich man this crap hurts the finances pretty bad.
I thank you all for your stories and hope mine can make someone feel normal again - I have felt like such a freak of nature or the lone stranger for years now. THANKS FOR THIS FORUM!!
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George_J
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Re: First Post
« Reply #1 on: Oct 13th, 2006, 3:33am » |
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Welcome. leftsideonly.
I'm a lefty as well, and an episodic as you are. I also prefer to be left alone.
It sounds as if we have many things in common, although I've been getting them for longer than you have.
If you don't mind me asking, how old are you? I'm 52--I used to cycle twice a year, spring and fall, but my cycles have gotten farther and farther apart as I've grown older. My most recent cycle was in the spring of this year.
Again, welcome. I'm sure many others will be along to welcome you.
If you have not already done so, I'd encourage you to take a look at the "oxygen info" link at the left side of your screen. Oxygen, properly administered, has been of immense help to many here. It's also safe, cheap, and readily available.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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BB
CH.com Alumnus
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I love YaBB 1G - SP1!
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Re: First Post
« Reply #2 on: Oct 13th, 2006, 7:15am » |
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Hello Andre,
Yes, its amazing when you finally get to talk to someone who has the same condition, you only need to describe a couple of details and they understand you perfectly, thats the beauty of this forum. Plus its so full of wonderful information that even the best neurologist may not have known.
Your description of CH could well have been that of my DH Daniel who is the one with cluster, almost exactly the same.
I also suggest oxygen, you may be able to abort the attacks without having to take zomig. Another thing you may find helpful for the night hits are melatonin. Taking melatonin every day before bed has pretty much stopped all the night hits for Daniel. It took about 1 week for it to work properly but once it works its wonderful. He started at 9 mg and is now taking 12 mgs regularly.
For the day time hits you may want to drink a cold red bull energy drink really quickly, that may abort one also. If the gas in the drink is annoying you can unscrew the lid then leave it in the fridge.
Let us know how you go and hope your cycle ends soon.
Take care and painfree wishes.
Annette
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Giovanni
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Re: First Post
« Reply #3 on: Oct 13th, 2006, 7:59am » |
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Welcome Andre,
A lot of us including myself believe that the triptan drugs do prolong the cycles and increase the hits that we have. I believe that I'm starting to come out of the cycle that I've been in---one in which I've taken entirely too many Zomig and Imitrex.
Oxygen, red bulls, melatonin, might help you along with your hallway walks. I drink a ton of coffee which seems to help also.
Hope you have relief soon.
John
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Sandy_C
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Burn that bra!
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Re: First Post
« Reply #4 on: Oct 13th, 2006, 2:59pm » |
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Hello Andre, and welcome. I'm a "rightie", and episodic. I feel very lucky, in comparison to many on these boards, because my cycles are typically 18 to 24 months apart, and last about 8 weeks. My last cycle, I relied on Imitrex, which helped tremendously with the hits, but, my cycle lasted well beyond my normal 8 weeks. This one went from early February through May - 12 weeks. Then I had 4 lovely weeks of pain free time, but the cycle started up again and lasted for another 4 weeks - on the OPPOSITE side ???
I am at the 14 month mark of being out of cycle, and this time, I am going med free. Not only because I believe my cycle was extended by the trex, but also because I've since learned that triptans are probably not the best thing in the world for me to take with a family history of early/fatal heart attacks, strokes, blood clots. I know that CH won't kill me, but those meds could. I plan on relying on oxygen, melatonin, water/ice, and rc seeds.
Again, welcome Andre. Read everything you can on these boards, and please ask any questions you need. Someone is alway here, and we're all ready to help you in whatever way we can.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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Tata
Guest
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Hi Andre
I'm a lefty, fall/winter, pukey, panicky, shivery, pacing, episodic leave-me aloner just like you. I also have the helpless spouse and kids who've seen the beast tear me apart and leave me writhing on the floor. Disgusting as it is, I feel better after throwing up, too. No insurance here, either--one more fun fact to add to the anxiety. Freak of nature? Nah, you sound normal to me. Welcome.
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thebbz
CH.com Alumnus
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Ow,Ow,Ow
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Re: First Post
« Reply #6 on: Oct 15th, 2006, 3:26pm » |
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Hello Andre,
There is no need to suffer through even one cluster. I think the doc is somewhat correct in that, the less drugs you do to abort and prevent the shorter the episode. I am not aware of any solid study that proves that though.
There are lots of alternative therapies and less invasive techniques that are effective. Look into 02, caffeine, and a host of other alternatives. Again there is no reason to suffer through these. Your doc is full of poop in that respect.(opinion)
Lefty too
jb
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Mikey
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Rock till ya Drop and DON'T mess with the FAM!!!!!
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Re: First Post
« Reply #7 on: Oct 16th, 2006, 4:59pm » |
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Hi Leftsideonly, welcome aboard our cluster ship!!!
You have finally found a home here, with friends and a heck of a lot of INFO!!!!!!
I'm a chronic sufferer for about 12 years now, and I know I wouldn't be here now if it wasn't for this site that I found almost 7 years ago.........I thought I was the only person in the world with it at one time too. You soon find out here that, that's not true!! So anytime you need an ear, I'm here for ya and a lot of others as well, and like you, I am also a "tough me not" when i'm in an attack which is at least 6 times a day right now.......
Hope the best for ya, and your family!!!!!!!!!!
Mikey..... 
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I love to ROCK very HARD!!!
CHRONIC and going crazy!! Want to come too?
Hope for PFDAN, peace and safety to you all!!
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leftsideonly
New Board Newbie
We can make it - - TOGETHER!
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Re: First Post
« Reply #8 on: Oct 19th, 2006, 1:10am » |
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Thanks to you all so very much for the kind, insightful, encouraging words and thoughts. I am very impressed with this websites content and the people that grace its pages. I never felt so much a part of a group of people without knowing any of them. Not that this is a great club to be a member of but the company seems to be very genuine sincere and caring. Thanks SO VERY much!
Peace and pain free wishes to you all!!
Andre
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winshots
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autumn can kill, you know
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Re: First Post
« Reply #9 on: Oct 20th, 2006, 11:30am » |
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hey leftside (i'm a rightside  )
We've got a lot in common, as do all the folks here.
I've had CH's for about 18 years now, and i stumbled over this website the day before yesterday. Been crying ever since...
It is so so sad to see so many kind people suffer, and yet it is so so comforting to know that you are not alone.
Please show this website to your wife, maybe even to your kids. This is an enormous resource of experience, knowledge and support.
I'm here to stay. Can't do without it. Pulls me thru.
You can rely on these folks. They know what it is.
All the best wishes to you and your family.
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