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Topic: Hello all... (Read 597 times) |
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yoyodyne
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Hello all...
« on: Dec 21st, 2002, 3:29am » |
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Hello all, my name is Francisco Dominguez, but everyone calls me Dom (it's a NAVY thing, most people couldn't pronounce my last name). I have been suffering from CH since the fall of 1998, but it wasn't until last Monday that I finally decided to seek medical attention. With the exception of last Sunday, I haven't had more than three hours of continous sleep for the last six weeks. My sleep deprivation (not that I sleep much anyway) is getting out of hand. This particular cycle that I'm in is the most viscious I have ever had. My last attack was a Kip 9.5. I'm just glad that I have found you, for it seems like a long road ahead, and like thay say, misery likes company. I started meds Monday night, and they don't seem to work, but then again, I probably have to give them time.
I'm glad that I have found all of you good people, and look forward to seeking your advice in this long, madness, twist of life, challenging existance, of living with cluster headaches.
Although I'm tired as hell, I don't want to, better yet, I'm affraid of going to sleep, because I know that I will be up in a couple of hours, whimpering and moaning, banging my head with my fists; but I have to work tomorrow, and I have to try to get some sleep.
With any luck, my preventive med will kick in tonight....
Dom
aka yoyo..
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Our stenght comes not from how much pain we are given, but rather from how we deal with the pain we are given...
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ave
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Hello Dom,
if it is indeed clusters you suffer from you have come to the right place. There is a lot of information under the buttons on the left.
Do the cluster quiz to see how much of what you go through tracks with others' experiences. And tell us more about your meds. If you are taking Verapamil as preventative, for instance, it takes tome to kick in and the dosage is of importance.
Also there is Oxygen... We can give you tips like you would not believe.
Tell us about it and sadly welcome to our weird family.
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OneEyeBlind
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Yea, I can do this
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Re: Hello all...
« Reply #2 on: Dec 21st, 2002, 5:15am » |
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Welcome to the board Dom. Here are a few suggestions in trying to get some sleep (take before going to bed)
Maxalt
Zomig
Dramamine
Benadryl
Imitrex tabet
There are probably lots of other suggestions as well. These are just a few. Do a search on "sleep deprivation" and you'll probably get a million hits !
Hope that helps, pull up a chair and start reading ... there is a ton of good info in the archives !!!!!!!!!
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SommelierCH
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I’m awed by the amazing resiliency that we possess
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Re: Hello all...
« Reply #3 on: Dec 21st, 2002, 5:30am » |
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Howdy Dom,
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. 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.
Good luck, friend,
David J.
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Jarvis
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Re: Hello all...
« Reply #4 on: Dec 21st, 2002, 9:20am » |
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yoyodyne hi. " Dominguez" not only can this bunch be there for you, but many could even pronounce your name....... welcome...... Its not so much the misery that likes the company as it is the "victory" over the battle that we all fight. Not many folks could spar with the beast as many times a day as some do here and to think that it is done with so little sleep and never enough training.
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Silver_Dolphins
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Do you nervously await the blows of cruel fate?
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Re: Hello all...
« Reply #5 on: Dec 21st, 2002, 9:31am » |
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Hi Dom.
I am so sorry that you had to seek this place out, but I am glad you found it. I discovered clusterheads.com and .org (OUCH) last week and have learned so much about our condtition since.
Become familliar with this website. Also, go to the OUCH web site and click away.
I hope the Beast gets bored with you soon.
PFDAN
Silver Dolphins a/k/a Barry
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Through the corridors of sleep, past the shadows dark and deep, my mind dances and leaps in confusion. I don't know what is real, I can't touch what I feel, and I hide behind the shield of my illusion
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domm
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I love YaBB 1G - SP1!
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Re: Hello all...
« Reply #6 on: Dec 21st, 2002, 11:14am » |
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Dom - (OK now I'm really confused.. ;D) Welcome to the board. We've been where you are now and this is one aspect of this beast that really stretches us to our limits. You didn't mention what meds you are starting, I use Oxygen and Imitrex as abortives and Verapamil as a preventative.
I hope the beast gives you a few days off or better yet, loses your address and moves on.
Hang tough
the other domm
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Cerberus
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Re: Hello all...
« Reply #7 on: Dec 21st, 2002, 2:23pm » |
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Hi Dom,
Welcome to the family, I didn't see what you have been taking already , but, Imitrex, Oxygen, and Verapamil seem to be the most common , at least, far as I can tell. I am on the above meds, and a host of other things as well, I wish you good luck experimenting.
The others are right there is a wealth of info here, use it and learn as much as you can.
PF to you soon..
Cerebus
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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Charlie
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Re: Hello all...
« Reply #8 on: Dec 21st, 2002, 8:57pm » |
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Welcome to our little corner. We do indeed understand sleep deprivation and all that goes with this horror. Here is a goofy sounding but for me, a very helpful technique:
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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Mark C
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Onward through the fog.
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Re: Hello all...
« Reply #9 on: Dec 21st, 2002, 9:19pm » |
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Welcome dom.............ditto to what has been said!
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cootie
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Re: Hello all...
« Reply #10 on: Dec 22nd, 2002, 2:37am » |
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Hi domm # 2......anyhow.....hope ya got some much needed sleep dude.........nice ta meet cha......Pam
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Azrael
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Re: Hello all...
« Reply #11 on: Dec 23rd, 2002, 12:44pm » |
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Welcome to the board! Sorry that the beast is using a particle accelerator to collide the atoms in your cranium one by one into a tiny fusion explosion. Good luck!
PFDAN....................................... Drk^Angel
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ZAIRA
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Re: Hello all...
« Reply #12 on: Dec 23rd, 2002, 1:11pm » |
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Hi, Dom.
Welcome in this family and good luck.
Zaira
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| « Last Edit: Dec 23rd, 2002, 1:11pm by ZAIRA » |
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