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hanisdee
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Help I am new to the board
« on: Apr 11th, 2003, 6:19pm » |
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I guess I am supposed to share my story. I have had "spells" of migraines as I have called them since I was 12, I am now 34 -yuck! With research on the internet I have now figured out I really do have clusters which my mom diagnosed years ago(as well as a neurologist) Right now I am in about my eighth week of them after a two year break and am not only exhausted and week but feel dreadfully sorry for my children and husband.
Is the hangover part really bad for everybody or is it just me? The pain itself is unbearable but I just don' t ever seem to recover completely before I am hit again.
I have read many interesting things on this board, one being the water and the other being oxygen both new to me, I will have to try.
I am sorry all of you suffer the way you do, but feel thankful to have people that understand what it feels like. Just a nightmare!!
Chrissy
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Chrissy
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jonny
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Re: Help I am new to the board
« Reply #1 on: Apr 11th, 2003, 6:23pm » |
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Chrissy,
Check your e-mail, all you need to know about 02 will be there.
...................................jonny
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hanisdee
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Re: Help I am new to the board
« Reply #2 on: Apr 11th, 2003, 6:24pm » |
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Thank you! 
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Chrissy
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cathy
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Re: Help I am new to the board
« Reply #3 on: Apr 11th, 2003, 6:26pm » |
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Hi Chrissy....sorry your a sufferer but I think you'll be pleased to know you couldn't have found a better site than this....but I don't think the word meegraine will go down too well...hope you get all the help and support you need from everyone here.
Cathy
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hanisdee
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Re: Help I am new to the board
« Reply #4 on: Apr 11th, 2003, 6:31pm » |
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That is the drift I am getting, they actually are not migraines, huh? They are their own entity-ugh... do you get the hangover thing where you just can't get out of the slump or once your pain is gone are you just perfect?
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Chrissy
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brain_cramps
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Re: Help I am new to the board
« Reply #5 on: Apr 11th, 2003, 6:58pm » |
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on Apr 11th, 2003, 6:31pm, hanisdee wrote:| do you get the hangover thing where you just can't get out of the slump or once your pain is gone are you just perfect? |
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Sounds like you're referring to what we refer to as shadows. They are very common between headaches. (ie. a shadow will quite often 'grow' into a 'real' CH)
Also, a number of people have shadows leading up to the start of a cycle and following the end of a cycle.
I hope this helps a bit.
PFDAN,
grant
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K.
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Re: Help I am new to the board
« Reply #6 on: Apr 11th, 2003, 8:22pm » |
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Welcome Chrissy,
Sorry you're going through this. There are lots of ways to help manage CH so try to learn all you can. For me it's verapamil and O2. I use imitrex if the O2 doesn't work.
There are a lot of great people here who really helped me. So don't be afraid to ask questions.
Wishing you PFD.
Karen
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Scotty_Dog
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Re: Help I am new to the board
« Reply #7 on: Apr 11th, 2003, 8:27pm » |
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Hi Chrissy,
Glad you found us, sorry you need us. If you are near the mountains of Virginia, have I got a Nero for you! He has the beast too and was the first Doc I trusted in 10 years. Acording to the replies I have recieved in my "Shadows??" forom, tha is what it sounds like you have with the Clusters. Bummer.
Please hang in there and seek out a good Nerologist,(did I spell that right?), and do not give up till you find one. Find someone on this board that lives near you and they can steer you clear of the Docs that will waist your time and money.
I think I can speak for everyone here and say, "do not feel sorry for any of us,...just send us money" ;D But seriously, I am glad you found us and may you be pain free soon.
Search this board and the links like www.ouch.com for as much info as you can get, there are new brakethroughs all the time, just no cure yet.
Scott
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Doc says,
"the pain is all in your head"
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don
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Re: Help I am new to the board
« Reply #8 on: Apr 11th, 2003, 10:00pm » |
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Hi Chrissy, welcome aboard.
You haven't mentioned if you are currently seeing a neuro or are being Rxed any meds.
Worse comes to worse if you get attacked go to your nearest fire station and they will administer some O2 for you.
Also, go down to your local market and get a bag of frozen peas. Apply it to the painfull areas when you are attacked.
Vigirous excercise aborts attacks for some. Run in place or whatever.
Over the counter dramamine has helped me get some sleep.
The OUCH website has a listing of recommended Docs. One may be in your area.
Apparently you are episodic and the shadows tend to hang around until your cycle breaks.
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| « Last Edit: Apr 11th, 2003, 10:10pm by don » |
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Frank
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Re: Help I am new to the board
« Reply #9 on: Apr 11th, 2003, 10:35pm » |
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on Apr 11th, 2003, 10:00pm, don wrote:| x-snip-xAlso go down to your local market and get a bag of frozen peas. Apply it to the painfull areas when you are attacked. x-snip-x |
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My doctor suggested this a few years ago, though not for clusters. 
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don
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Re: Help I am new to the board
« Reply #10 on: Apr 11th, 2003, 11:37pm » |
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Frank
FOFLMYBO.
That little ailment can be a bit of a cluster to. LMAO
Come to think of it that would also be abbreviated to CH
LMAO
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| « Last Edit: Apr 11th, 2003, 11:38pm by don » |
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catlind
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Re: Help I am new to the board
« Reply #11 on: Apr 12th, 2003, 3:04am » |
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Welcome aboard Chrissy,
I hope you are able to find something that works for you here. There is a wealth of information to be had, so read read read.
Hope you find pain relief soon.
Cat
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ZAIRA
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Re: Help I am new to the board
« Reply #12 on: Apr 12th, 2003, 8:11am » |
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Welcome Chrissy!!
In this site you are in the right place!! My suggestion is to try O2, for me it works and sometimes I don’t use Imitrex. This is to stop the attacks.
Verapamil and Lithium is also for me very helpful (talk to your Doctor).
Stay with us! All the best for you. 
Zaira, Italy ;D
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hanisdee
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Re: Help I am new to the board
« Reply #13 on: Apr 12th, 2003, 8:59pm » |
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I have not seen a neurologist since I was about 17 years old because they did not do anything for me. I have just gotten prescriptions from my general practitioner. They just gave me one yesterday called Maxalt and it actually worked last night to stop my pain and put me to sleep! Thank god because I had a very rough week.
Thanks for the support I am learning a lot on this site.
Chrissy
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Chrissy
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Mikey
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Re: Help I am new to the board
« Reply #14 on: Apr 12th, 2003, 9:27pm » |
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Welcome, Chrissy.
We were all at your possition at one time or another.
Then we found help through here or from an experienced Neuro with CH's. Finding an experienced Neuro is the very best thing you can do for your self right now, and coming here for info and help.
For me Imitex Inj. 6mil or the Nasal spray does good for me along with the preventives verapimil, Depakote and lexapro. O2 used to be one of my life savers, but is'nt any more because of other health problems i have that does'nt allow much oxygen into my blood stream, so it causes me to be on O2 all the time, thus decreasing the effect that it would have on my Ch's now. the bummer is the lack of O2 in my system is making my Ch's worse.
Lots of luck to ya, and may the beast just up and leave you forever.
I don't think that has ever happend to anyone, atleast anyone i've ever spoken to, but we can all have wishful thinking!
Mikey,
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CHRONIC and going crazy!! Want to come too?
Hope for PFDAN, peace and safety to you all!!
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Mark C
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Re: Help I am new to the board
« Reply #15 on: Apr 12th, 2003, 11:01pm » |
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Welcome Chrissy,
Sounds like you belong.....I am sorry. This is a good place, I just wish we didnt need such a place.
I am glad the Maxalt helped, it has helped me in the past also. Research this site and the OUCH site for your Clusterhead University Degree! I will attach a favorite link to get you started....click here.
PFDAN's
Mark
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Jarvis
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Re: Help I am new to the board
« Reply #16 on: Apr 12th, 2003, 11:40pm » |
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Hi chrissy - The hangover thing after a severe attack is normal, considering you have just been in battle with a true demon. Seems to use a lot of energy to fight the fights we fight. I would compare it to a ten mile sprint. Gonna have a hangover, exhaustion, whatever. I generally dont suffer the before shadows as most seem to. But I sure feel hungover at times.
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Charlie
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Re: Help I am new to the board
« Reply #17 on: Apr 13th, 2003, 10:09pm » |
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Welcome to the fold Chrissy. This place is full of good ideas. If you read and ask questions, you will find things here to help you, perhaps with pain as well. Here is something that most of the time, got me back to the real world:
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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Woobie
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Re: Help I am new to the board
« Reply #18 on: Apr 14th, 2003, 7:47am » |
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Welcome Chrissy..
Just a supporter here.. saying HI.. and welcome.
Tina
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catlind
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Re: Help I am new to the board
« Reply #19 on: Apr 14th, 2003, 8:58am » |
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on Apr 14th, 2003, 7:47am, Woobie wrote:Welcome Chrissy..
Just a supporter here.. saying HI.. and welcome.
Tina |
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Sheesh what are we going to have to do to get them to stop saying JUST a supporter!!! That is the hardest job in the world!! You supporters rock
Cat
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hanisdee
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Re: Help I am new to the board
« Reply #20 on: Apr 14th, 2003, 5:57pm » |
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thanks everyone for all of the support, I am astounded!! 
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Chrissy
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suzy617
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Re: Help I am new to the board
« Reply #21 on: Apr 14th, 2003, 6:41pm » |
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Hi Chrissy,
suzy
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Opus
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Re: Help I am new to the board
« Reply #22 on: Apr 14th, 2003, 7:57pm » |
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Chrissy,
It looks like the double post is getting double the response. All I can add is don't be afraid of the high doses most clusterheads take. It is needed. Stay away from narcotics, they can help some but may lead to addiction and for some it can make the pain worse. Stay away from Motin, tylonal and ect. They ae useless and if you take them for an attack you can end up with nausea on top of the pain.
Glad to see you have something to get through the night. If that stops working try sleeping in a recliner or propped up in bed. It stops the wake up calls in some. Here is a link for natural remedies. http://www.clusterheadaches.org/resources/non_script_treat.htm
Some seem strange but there have been reports that the blue cheese and vinegar treatment works.
Opus 
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