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mkershaw
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My First Post!
« on: Dec 12th, 2002, 11:13am » |
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Well, hello all!!! My name is michael, I am 24 years old, and was diagnosed with cluster headaches about a year ago. When the doc was first telling me all about them i was like are you kidding me? i could not believe when he told me that he couldn't really do anything for me, and the fact that i'm going to get them for years to come. GRRREEEATT i was thinking...he gave me verapamil, naprelan, and imitrex......i don't really like the way imitrex makes me feel when i take it...so honestly, most of the clusters that i get, i just go med free....it's absolutely the most horrifying pain that i've ever gone through, but i just haven't found anything that actualy seems to work real well.
so it hasn't been quite a year yet and all of a sudden the past 2 or 3 weeks, i've been getting those wonderful headaches that it seems we all know. matter of fact, i was woken by one this morning...it only lasted about 20-25 minutes though....so i was thankful for that. only a few people that i know have seen me when i've had them...i try not to let anyone though...my wife just looks at me soo sympathetic when i'm getting one, but she just has no idea. i just sent her this web page that i came across today, and i'm really excited that i did come across it. just reading on the first page, i was like OMG....these people are experiecing 100% what i deal with all the time. i'm definitely not happy for them, but at the same time i'm happy that i finally have someone that knows exactly what i'm going through. welp, i'm probably just rambling a little now, and i imagine i will be posting pretty frequently here, so i'm going to get back to what i was doing....i just wanna say hello to everyone and i'm sry to hear that you deal with this horrible thing....but hey...we're all clusterheads together right??? 
michael
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Virginia
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Re: My First Post!
« Reply #1 on: Dec 12th, 2002, 11:31am » |
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Hey Michael,
Welcome to our family....sorry that you are suffering from these damn "headaches"  . I'm glad you found this site though. It's always a welcome relief when you discover that you're not crazy, and you're not alone.
If you're Dr. is not willing to try different options for treatment, try another Dr. And bring lots of information with you to your appointments. There's lots of reading on this site but it will be well worth your time. You will learn more about clusters than you could ever imagine!
I hope you find comfort in the fact that you have a new support system! 
Virginia
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The Clusterhead formerly known as 9erfan.
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Jimi
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Re: My First Post!
« Reply #2 on: Dec 12th, 2002, 11:31am » |
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I was 22 when I had my first bout with clusters and I am 52 now. So you can have a good life even as a clusterhead. I hope you read all the good info and research that has been gathered from all over the world on the left. I hope that you consider oxygen as a 1st line defense for aborting them. The info should tell you all that you need to know but if you have any questions, just ask. We are hard core clusterheads here with strong personalities (probably has something to do with why we get them LOL) but if you need info, all you gotta do is ask and we will stop what we are doing and try to help. Go luck and welcome.
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Mark C
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Re: My First Post!
« Reply #3 on: Dec 12th, 2002, 12:30pm » |
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Welcome Mike,
Sorry about the head, I know how you feel... 
Start your CH education right here and on the OUCH site, many things to read. You are lucky (?) to be diagnosed so young. A bunch of us are mis-diagnosed for a long time. Maybe the medical community is finally coming around.
Mark
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RevDeFord
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Pain is real if the neighbors know you have it!
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Re: My First Post!
« Reply #4 on: Dec 12th, 2002, 12:58pm » |
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Congratulations on being handed the biggest trophy one could receive - the one few can brag that they have and many will try and say that there's is bigger.
Ask about the O2. Oxygen is a great method for aborting clusters, is inexpensive, and easy to administer without all the side effects. Unless you put the mask over your ear instead of your mouth.....
Kinda like leftest Ted and Charlie here on the board....
Just joking guys.
Welcome to the board.
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I don' know why it hurts, but I pray it will stop.
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mkershaw
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Re: My First Post!
« Reply #5 on: Dec 12th, 2002, 3:05pm » |
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well thnx all..for the warm welcome...i'm sure i will finally learn more about the ol clusters...you wanna hear something that really pisses me off?? my father just gave me a call....and was like are you home from work today? i said yes..he goes well didn't u hear me at your door? i simply told him that i took some pills and layed down because i was whoooped up on today...i've had 2 so far.....and he just laughed at me....I was like WHOOA there...this is no laughing matter....he's like what...it's only a headache...i honestly could not believe that he said that to me....i felt like saying man..i wish you could just experience one of these bad boys...but then i restrained myself...because i honestly dont' wish that upon anyone...i just couldn't believe the way that he reacted....obviously i'm going to have to send him this link for him to get a little more educated about what his son is going through. DOUBT THAT WILL HELP...hehehe.. sry for venting....it just really pushed my buttons....
now..back to saying...thanks for the warm welcome and i absolutely will be asking my doctor about O2 very soon i imagine. so how long do these really last?? doc told me something like 10 years??? or is it something that i am just going to have to live with the rest of my life??? is there anything like caffeine or something that i should cut out of my diet?? i know that is often something that triggers migrains...i'm just kind of in the dark here about what I can do here. that's all for now...i have to go study up...i have to take a few tests tonight....
michael
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netniet
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Re: My First Post!
« Reply #6 on: Dec 12th, 2002, 3:36pm » |
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Hello michael,
I said it before, but I do think that the people near us, should feel the pain we have for one minute, so they understand what we are going through .
They will never laugh or call it "a headache" again 
(I don't mean a skip 10 that would cruel)
How do we explain something we can't describe ???
net-
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netniet
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Re: My First Post!
« Reply #7 on: Dec 12th, 2002, 3:37pm » |
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Hello michael,
I said it before, but I do think that the people near us, should feel the pain we have for one minute, so they understand what we are going through .
They will never laugh or call it "a headache" again
(I don't mean a skip 10 that would be cruel)
How do we explain something we can describe ???
net-
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tanner
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Re: My First Post!
« Reply #8 on: Dec 12th, 2002, 3:51pm » |
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hey michael, i'm really sorry to meet you ;D, i trust you get my drift. 24 huh, seems too young for this crap, but i guess thats cuz i'm old. i can only endorse what mark c. says above. being young and already having found your way to this information bank should save you from a world of erroneous shit. i hate the h word! ???
be talkin to ya, tim
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I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
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Virginia
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Re: My First Post!
« Reply #9 on: Dec 12th, 2002, 6:43pm » |
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Hey Michael,
No way to tell how long you will have them. I've had mine 17 years but plenty of people here have had them much longer.
As far as caffeine goes, you don't need to eliminate. In fact a lot of people on this board get positive results from drinking straight black coffee right when they are having a bad cluster. Doesn't work for me, but may work for you. Also, a lot of the headache meds out there have caffeine in them.
Good luck. Stick with us. Don't be too hard on your dad yet. He just needs to be educated. Trust me, we've all gone through it with our loved ones.
Virginia
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The Clusterhead formerly known as 9erfan.
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SommelierCH
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Re: My First Post!
« Reply #10 on: Dec 12th, 2002, 7:33pm » |
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As always a double edge welcome. Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in.
What works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks. (thanks again, Jonny). Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.
The cumulative amount of knowledge residing within these people on the board, is amazing. Give them as much info about your problem (see “Hints for your first post”) and they will be able to help that much more.
I found out through the years, that the only thing that grabs people’s attention and makes them read about cluster’s is sensationalism. You know, what the news programs do to attract and keep viewers. The common denominator for all of this is: pain. I put together this “handout” quoting several sources describing the indescribable pain that cluster headache sufferers go through. I gave this to the owners of my restaurant, the managers and posted it on the employee bulletin board. I hand wrote “Just in case you were wondering why I have been weirder than usual” in the bottom corner. This has made all the difference in the world, in the way everyone has treated me this cycle (my third at this job). Print this out and keep some copies with you. Give it to anyone who is in your circle and has an effect on your life. We have enough pain to deal with and this (I guarantee you) will get them off your back.
Exploding Eye/Suicide: CLUSTER HEADACHES____________________________________________
________________________________________________________________________ ___________
The pain is so severe that some have described it as feeling "like the eye is going to explode."
They've caused their victims to pace the floor in agony, unable to lie down; literally bang their heads against a wall; even, on rare occasions, to commit suicide to escape the pain. They're cluster headaches, and those who suffer from them are often called ClusterHeads.
Symptoms of Cluster Headaches
· excruciating pain, usually on one side of the head, often around the eye, often described as "piercing" or "stabbing"
· excessive tearing, swelling and redness of the eye on the affected side
· shrinking of the pupil (miosis) on the affected side
· inability to lie down or remain still
· drooping of the eye eyelid on the affected side
· sweaty forehead or face
· runny or stuffy nose on the affected side
· anxiety, depression, dejection, irritability
Cluster attacks produce pain nearly unimaginable in its intensity. Because it usually centers around the eye, the eye often feels a great deal of pressure, and some sufferers have described the pain as feeling "like the eye is going to explode" or "like someone plunged a hot fireplace poker into the eye”.
“Cluster headache (CH) is an excruciating syndrome and is probably ONE OF THE MOST PAINFUL CONDITIONS KNOWN TO MANKIND, with one female patient describing each attack as being worse than childbirth. The pain paroxysms are so severe that many patients are driven to desperate measures, including suicide.”
Prof Goadsby, clinical neurologist consultant and Dr Matharu, research registrar at the Headache Group, Institute of Neurology, London
___________________________________________________________________
1 Silberstein, Stephen D., Lipton, Richard B., Dalessio, Donald J.; Wolff's Headache and Other Head Pain, Seventh Edition, 2001. Chapter 12, Dodick, David W., Campbell, J. Keith "Cluster Headache: Diagnosis, Management and Treatment," 283-321.
2 Headache: The Journal of Head and Face Pain 41 (3), 330-342.
Available from: http://dx.doi.org/10.1046/j.1526-4610.2001.111006330.x
3 Eekers, Pje & Koehler, Pj
Naratriptan prophylactic treatment in cluster headache.
Cephalalgia 21 (1), 75-76.
Good Luck and PFDAN,
David J.
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Charlie
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Re: My First Post!
« Reply #11 on: Dec 13th, 2002, 6:23am » |
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Welcome and I'm always sad to hear of another with this horror. Man......are we alike. I was 23 when I got mine in 1969 and they lasted just about the same amount of time as yours. I would have between 3 and 5 a day with some rare variations. If you really are like me, they will show up two, maybe three times a year for between 3 and 6 weeks. The good news is that mine disappeared in 1991 when I was 45. I'm now 56 and have had zero pain for 11 years. The only drug I ever used was Inderal, the beta-blocker. For me, it would help after a week or so. I took it only during an attack.
Even though I was free of this thing for a long time, I was flabbergasted to find others. If only this place were around 30 years ago....
Anyway, for your father, here is a link to our friend Simon Bower who has written the best description for employers and family we have. It's worth a print out.
http://www.ouch-uk.org/ch/note_colleagues.cfm
Here is a technique I learned from an old neurologist that I post all the time here. As goofy as it sounds, it has been successful for many.
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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Opus
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Re: My First Post!
« Reply #12 on: Dec 13th, 2002, 7:03am » |
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Michael,
Sorry you have come to join us. Try sleeping in a recliner or propped up on pillows to help with the wake up calls. Also check this out for none med treatments http://www.clusterheadaches.org/resources/non_script_treat.htm
Opus 
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echo
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Re: My First Post!
« Reply #13 on: Dec 13th, 2002, 9:17am » |
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Welcome to the MB Michael.
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Dave_W
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Pain Free Days!!!
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Re: My First Post!
« Reply #14 on: Dec 13th, 2002, 9:32am » |
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Hi Michael!
Welcome and sorry! I have a lot of good support around home and work, so I don't have to put up with the 'just a headache, why don't you lie down a minute' cracks very often.
I'm a 20+ year clusterhead, but only found out what they were by finding this board about 4 years ago. My doc at the time confirmed what I brought him from here, it was cool. I manage much better now -- have a look at the medications section (button on the left) for lots of possible preventive things to try.
Since I had 'em for so long with no treatment at all, I learned to cope as you are doing, without any meds. The thing I always appreciated was how quickly an attack goes away -- even if it's an unusually long one (maybe 3 hours tops), when it's over I go from full pain to zero pain in just seconds -- quite a rush! The elation gets me thru to the next attack from the beast.
Enjoy your life between the headaches is my message to newcomers -- no sense worrying about the next one until it gets there. 
Here's to Pain Free Days (PFD's) soon and often for ya,
Old Dave
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Azrael
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Re: My First Post!
« Reply #15 on: Dec 13th, 2002, 12:23pm » |
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Welcome to the board! Sorry that the beast is ridin' your cranium down a rusty, hot, jagged slide covered with tacks and razor blades. Good luck!
PFDAN...................................... Drk^Angel
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Jarvis
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Re: My First Post!
« Reply #16 on: Dec 13th, 2002, 10:01pm » |
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Hi Michael. Say I like your docs ten year plan. Trouble is you will probably get a free subscription for ten more years when that plan runs out. I would say on diet, that every episode youll probly find something that aggravates one year but not the next. Coffee is good. Definately avoid alcohol in a cycle and you will be better off. Party hard when you can though. Make life memorable. CH is a pretty nasty crutch but the positive is that for most of us, they allways go away after an hour or so even though they come back.
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Ree
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Re: My First Post!
« Reply #17 on: Dec 13th, 2002, 10:12pm » |
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Welcome and tell your wife about the supporters MB and have her visit us often... ree
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