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Topic: Hello (Read 301 times) |
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LisaJ
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I love YaBB 1G - SP1!
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Hi everyone.
Glad to have found this website  Ive suffered with CH's for about 10 years. Ive been to countless doctors and have countless bottles of meds that *dont work* If you were to see my medcine cabinet you would think dang a junkies paradise. The first thing a doctor wants to do is put you on anti depressants that again *dont work* im in pain not depressed dude. My headaches wake me around 2 in the morning I too cannot laydown i just have to get up get some water rub and rub my head pull my hair take something that I pray works and finally sweet relief. Then around 4 am do it all again. I pray each night dear god please dont let me wake up with a headache tonight sometimes that works sometimes it dont. My Grandmother had these headaches just like me so i guess i came by it honest eh lol, What scares me most is that the pain is so bad sometimes I think i might have an anurism.
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E-Double
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Re: Hello
« Reply #1 on: Jun 21st, 2005, 10:22pm » |
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This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
Ask for a script and if needed FIGHT fOR Oxygen...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Educate your doctors!!!
Since you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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marlinsfan
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Re: Hello
« Reply #2 on: Jun 21st, 2005, 10:23pm » |
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Hi and welcome. Other than praying, what has worked? Anything? have you tried oxygen? I abort with O2 when I get night attacks. 99% of mine are at night....
I started taking melatonin before going to sleep. at 6 mg I had 2 nights with no pain and 2 nights with attackes. Since increasing to 9 mg, no pain for 3 nights in a row.
Read up, lots of good info here. I've been here less than a month, but my life is a million times better!
Sleep well.
Jose
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Gator
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Re: Hello
« Reply #3 on: Jun 22nd, 2005, 3:16am » |
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Welcome Lisa. It is not uncommon for doctors to prescribe anti-depressants for ch, especially in combination with other meds. There are some people for whom these drugs work. You'll find lots of people here either took or are still taking Nortriptyline, Amitriptyline, Wellbutrin, Effexor and others. Besides that, during the worst part of a cycle clusterheads can become very depressed. The anti-depressants can help stave off the Suicide part of the Suicide Headace.
A cabinet full of ineffective meds is another common trait of clusterheads. I have a desk drawer full as I type this. So what exactly have you taken for ch? How long do your attacks last?
Oxygen has been mentioned and links provided. Read them. As well as it works, I'm surprised at the resistance of some doctors to prescribe it. It has to be used properly to be effective. It should be prescribed up to 15 liters per minute via a non-rebreathing mask (plug all the outside air inlets and cut the straps off) for no more than 20 minutes at a time. If the standard 7 - 10 lpm doesn't work for you, crank it on up a little at a time until it does work or until you hit 15lpm. Many find that if they keep breathing for approximately 5 minutes after the attack is over, they get better results. Regardless of how you do it, you really don't want to go over 20 minutes.
Here is some research to show your doc if s/he balks at a high flow rate:
http://www.chhelp.org/mhni.html
Besides all the links you've been given in this thread, read the links to the left and the posts on the various message boards. Tons of information there.
Again, welcome. I wish no one had a reason to be here, but if you have CH, there is no better place in the world for info and support.
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LisaJ
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I love YaBB 1G - SP1!
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Re: Hello
« Reply #4 on: Jun 22nd, 2005, 12:25pm » |
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Thanks for big hello's everyone!
For what i have took for my headaches are paxil, effexor,antitriplamine, xanax, imtrex, maxalt,zomig,adavan,migranal. flexareel (sorry bout the spelling lol) what triggers mine: could be anything to nothing at all. I've monitered food ive eatin, stress levels, weather conditions, so I really never know. mine that come in the night last from 30 to 45 minutes and the ones that come in the day can last for 2 to 3 days. What seems to help keep one away is if a take 3 tylenol pm's about an hour before sleep, some people say 3! I would be assleep for 2 or 3 days but when you've took as much as I have I think you build up a tolerence for stuff like that. I don't drink alcohol because that is a sure way to get a really bad one...one drink for me ends up with a headache for some reason. Oh yeah I have took demoral for headaches when I was pregnant with my son because I was in and out of the hospital so much with those things I had Home health care...Thank God for insurance lol I was sent to a neurologist for them and he gave me thorozine when I got so far along I couldnt take the demoral. I'm going to go get some of the melatonin today and see how that works for a preventive. Ive had MRI scans CT scans and nothing was found. I Think Ive just got THE CURSE OF THE HEADACHE! lol Again thanks everyone for the welcome!
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lionsound
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Re: Hello
« Reply #5 on: Jun 22nd, 2005, 12:45pm » |
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on Jun 22nd, 2005, 12:25pm, LisaJ wrote:Thanks for big hello's everyone!
mine that come in the night last from 30 to 45 minutes and the ones that come in the day can last for 2 to 3 days. |
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Welcome Lisa! 
just curious...could you explain the day ones a little better? Do you mean that the pain goes non-stop for two or three days or do you get the 45 min ones for two or three days in a row. How long in actual time does each day headache last?
sorry you are in so much pain,
be well and Pain free,
-lionsound
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KMT
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Re: Hello
« Reply #6 on: Jun 22nd, 2005, 1:27pm » |
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Welcome to the family Lisa but sorry you had to seek us out. Lots of good information up above and to the left. Just wanted to welcome you.......KimY
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aka...................................................... KimY
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LisaJ
New Board Newbie
I love YaBB 1G - SP1!
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Re: Hello
« Reply #7 on: Jun 23rd, 2005, 8:12am » |
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Hey thanks for the welcome Kim!
Lion...my headaches that come in the day arent as sever or a sharp of pain like the ones that come in the night. When they start during the day its like a dull pain on the left side of my head and the left side of my nose. The ones that come in the night are like Boom Boom Pain that you can't hardly stand...The ones like that last the shortest thank God.
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LisaJ
New Board Newbie
I love YaBB 1G - SP1!
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Re: Hello
« Reply #8 on: Jun 23rd, 2005, 8:15am » |
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Oh guys sorry if that last post sounded screwy  We;ve just gotten back from the hospital with my son who is 9 . He stepped on a toothpick and it broke off in his foot. So they had to put him to sleep to get it out..First they tried to do a local block but that didnt work so they put him out.
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lionsound
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Re: Hello
« Reply #9 on: Jun 23rd, 2005, 10:44am » |
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hi Lisa,
Totally understand about the kiddo I have a ten year old myself. hope he's feeling better.
I'm no doc...but the day ones sound not like the night cluster ones. They could be a diferent kind of headache like migraine or or maybe rebound form the tylenol or other meds or something else entirely. Could be your version of a the "shadow" of a CH too.
The night ones you've got timed...how about the day ones...do they fade or stick around?Do you know how long n minutes they last? Sometimes keeping a HA diary is helpful because we can see better for ourselves what is going on.
Is your doctor a headache specialist?Neuros that claim to know things about HA's aren't always specialists. A good neuro can help you sort out what's going on.
be well,
Rori
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unsolved1
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Welcome Lisa!
Grab an oar and start rowing
PF Wishes
Unsolved
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