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Topic: New Sufferer (Read 609 times) |
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kc430
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New Sufferer
« on: Oct 16th, 2007, 1:15pm » |
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Hi fellow sufferers!
I was recently diagnosed with cluster headaches from my neurologist.
At first, I thought that it was a tumor causing my problems, because it was unlike anything I had ever experienced.
The first time I experienced a cluster headache, the pain over my left eye was so intense, that it actually forced my eye shut.
My left eye watered more as the pain became more intolerable. The area around my eye swelled and turned reddish-purple in color. It sorta looked as though I had been rubbing the area.
The entire area over my left eye was sensitive to the touch.
I can honestly say that my cluster headaches equal in intensity to the migraines that I get, but in a totally different way. They are completely different experiences.
The euphoria that I experience after the pain and throbbing decreases is amazing. I can only compare it to the feeling you get after a hot shower. Refreshed.
I seem to get a bad cluster headache once or twice every couple of weeks. It starts out as a dull pain over my left eye when I wake up in the morning (and sometimes wakes me up) then gradually builds to ultimate pain where I suffer for a good 30-60 minutes when the pain finally subsides.
However, the headache (dull pain) itself remains for several hours afterwards. Only on rare occassions does the intense pain/throbbing come back.
Right now, im taking amitryptilin. My doctor calls it preventive medicine. I've been taking it for about 3-4 weeks. I dont really notice a difference. He may have to up my dosage.
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Guiseppi
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Re: New Sufferer
« Reply #1 on: Oct 16th, 2007, 1:22pm » |
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Welcome to the board, although very sorry you had to find us. Talk to your doctor about oxygen. It should be your first line abortive strategy. Here's how it works.
You must breathe pure oxygen, using a non rebreather mask, at a high flow rate, 15 LPM or better. You must not take in any outside air, and you mustn't rebreathe any of your exhaled air, both will dramatically decrease the effectiveness of the treatment. I can abort most headaches in less then 10 minutes, often in as little as 6 minutes. The biggest advantage in my book is when I abort with oxygen, I don't get the head ache hangover. That dull lingering pain you described.
For whatever reason, doctors are very hesitant to prescribe it, preferring to dose you with narcotics which carry so many other risks!!! Print out the oxygen info on the left and take it to your doctor.
For now, try using energy drinks for those shadows and even to abort your attacks. Monster, Rock Star, any containing the combination of caffeine and Taurine, might help alleviate some of the hits for you. Welcome to your new second home!!!
Guiseppi
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kc430
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I love YaBB 1G - SP1!
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Re: New Sufferer
« Reply #2 on: Oct 16th, 2007, 1:48pm » |
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Thank you for the advice! I appreciate it! I will definately check into that!
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Rosybabe
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Re: New Sufferer
« Reply #3 on: Oct 16th, 2007, 1:57pm » |
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Welcome Home Kc!!
you can get more information at the O.U.C.H website, here is the link:
http://www.ouch-us.org/index.shtml
Oxygen, Oxygen, demand Oxygen on your next Doctor visit!!
Melatonin may also help for night hits.
Wishing you a very short cycle!
Rosy.
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DennisM1045
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Re: New Sufferer
« Reply #4 on: Oct 17th, 2007, 7:45am » |
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Hi KC,
I'm sorry to hear you have CH. You've found the best place on the Internet for info and support though. Welcome to your new home 
I don't have any experience with Amatrypiline so I can't comment there. There are a bunch of threads here on the board though. You should read through them and form your own opinion. Just google "Amitriptyline site:www.clusterheadaches.com" to find them.
If that med doesn't work out there are lots of other options. Read thorugh the info here: http://www.plainboard.com/ch/chtherapy.pdf. One thing is certain about CH; nothing works for everyone but there is something out there that will work for you.
My main abortive is 100% Oxygen at 15lpm. 15 minutes on the mask will send 90% of my attacks on their way. No side effects other than some dryness. Drinking lots of water help with that. You should look at the info here: http://www.ouch-us.org/medications/oxygen/o2links.htm. You'll find good material on proper usage and research info to help get your Dr on board.
Anyway, I hope some of this helps. You aren't alone in this fight. Stick around and let us know how things go for you.
-Dennis-
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sldrswyfe
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Re: New Sufferer
« Reply #5 on: Oct 19th, 2007, 2:27pm » |
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Welcome...so glad you found ch.com.
Amytryptilline can be a good thing...for me, it had very bizarre side effects though.
Such as, being in that sleep/dream state and saying crazy stuff out loud...but KNOWING I was and not being ABLE to stop. Proceed with caution.
For a lack of a better word, sleep-walking. I one time, in that state, made oatmeal and put ketchup in it...but KNEW I was doing it, couldn't stop it, but at the same time KNEW it wasn't right...(no, I didn't eat it, I went back to bed).
I shudder at the thought. But it can also be a wonderful help for some.
You are at the best place you can possibly be for information. DJ, our webmaster, is wonderful at keeping everything updated...keeping us informed.. running a very tight ship.
Im just glad you found us...so you're not alone. Thoughtfully, Sherri
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"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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Mikella
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Re: New Sufferer
« Reply #6 on: Oct 20th, 2007, 2:01pm » |
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Hi & welcome to the site, I'm new here as well. I was on amitriptyline for 2 years. What dose are you on now? It takes a while to notice a difference... probably almost 2 months........ but don't lose hope, it is worth a try. For me, it LESSENED my pain, but did not take it away. It was not the answer for me, but surely better than nothing at the time (I wasn't diagnosed with clusters then). I do hope you have good luck with it. No doubt, you will notice an improvement. Remember that it is an old drug that is loaded with side effects. I didn't have TOO much of a problem with them to be honest, but it did increase my appetite biiiiiiiiiiiiig time, and I gained weight (not a lot, I'm petite, so it wasn't a big issue, but if you're female, you'll understand). I was also on a LOW dose (only 20 mg per night!... sometimes I would take more). So the side effects would probably be worse on higher doses. But higher doses may very well be better for treating clusters as well! I want to warn you about coming off of amitriptyline.... Difficult. Just remember that. Don't worry about it, contact me if you want when you go off of it and I can give you some advice. You'll be just fine. My psychiatrist took me off tooooooo fast. It took me a month or so to come around at all.. but no doubt you'll be a-ok just going super slow WHEN the time comes. Not something to worry about now. I really hope ami is your answer! Keep posting around here and people will help you out. GL and pain-free wishes.
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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barry_sword
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Re: New Sufferer
« Reply #7 on: Oct 20th, 2007, 3:07pm » |
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Hi kc. Welcome to your new home. You will find a lot of support here and a ton of info to read.
You must try to get the o2 as mentioned by others. I was more than skeptical about it until I tried it.
A non-rebreather mask, 15lpm regulator and I was able to abort a very bad hit within a few minutes. I am on 480mg Verapamil as a preventative and that is what is working for me so far.
Print off the o2 info to your left and take it to your Doc. I hope he listens to your requests.
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Annette
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Re: New Sufferer
« Reply #8 on: Oct 20th, 2007, 8:21pm » |
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Welcome to the family, sorry that you are here with us because of pain but we are glad we can offer you a family with real understanding.
There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on.
Regarding medication to control CH, a few things are a must to try, as they work so well for many.
1- Oxygen : cheap and fairly safe, and can abort an attack in mins. Make sure you have a regulator that can go up to 15L/min and a NON-rebreather mask. The best is the clustermasx which can be bought online at www.clustermasx.com. Its designed and manufactured by one of our own Cher, Ben. He is very helpful too.
2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins. The best is the injection, nasal spray is a bit slower and tablet is pretty useless as it can take up to 1 hr to work.
3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns. You need to talk to your doctor about this.
4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks.
5- For night attacks, try Melatonin from 3mg to 15 mg per night.
6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc.
7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps.
8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need.
9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also.
10- Other goodies to be discovered at a later date
Take care and wishing you many PFDAN ahead.
Annette
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Shedz
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Re: New Sufferer
« Reply #9 on: Oct 20th, 2007, 8:24pm » |
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Welcome to the board KC, crap that you have to be here but you've found the right place. 
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I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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Mikella
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Re: New Sufferer
« Reply #10 on: Oct 21st, 2007, 8:57am » |
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Annette, that was a really good summary of info, helped me a lot too lol Tnks
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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