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Topic: Hi, all! New guy from AZ (Read 832 times) |
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RyanS2
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Hi, all! New guy from AZ
« on: Jul 7th, 2006, 10:25am » |
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Hi, everyone. Just thought I'd introduce myself.
I'm Ryan, 32, living in Mesa, AZ.
I've had CH for about 6 years, episodic, 4 attacks thus far. I'm actually in the midst of one now. This ones been going on for about three weeks, from 2-6 per day.
I haven't been officially diagnosed, yet, but CH is the only thing that fits what I go through. Last doctor I went prescribed Fioricet and called it a day. Didn't help too much. Currently, I use a cocktail of Alavert, Excedrine Migraine and Percocet that somewhat eases the pain (maybe 20-25% reduction in pain) until the whole thing subsides. Tha Alavert really does ease my sinus pressure after 10 mins. The Excedrine or Percocet, not usually until the end (I alternate them to hopefully sidestep the addictive nature of the Percocet).
Mine always strike an hour or so after going to sleep. I get up, do the dance, and anywhere from 30 mins to two hours later, I'm well enough to try to lay down again. I always get a second one (at a minimum) after falling alseep again. Rarely, do I get one during the day. I did have one at work when this attack started. Not a good thing to happen when you work in Tech Support.
Yesterday, (7/6, my birthday) I had 3 and only got maybe 3 hours sleep. Day before that, I had 4 with what felt like no sleep, maybe 2 or 3 hours. On top of that, I'm afraid to go to sleep because I know that an attack (or 2 or 3) is imminent.
All during this particular bout, I've felt the shadow. Kind of like a cat getting ready to pounce on a mouse. You know it's coming, it's just a question of when.
I'm definitely ready to see a doctor who knows about/specializes in CH. If anybody here knows of any Phoenix area doctors, I would really appreciate it.
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BobG
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Hi, all! New guy from AZ
« Reply #1 on: Jul 7th, 2006, 10:52am » |
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Hello Ryan, Welcome to the board. Sorry to hear you're hurting.
About the Alavert, Excedrine Migraine and Percocet...
Most cluster sufferers DO NOT use painkillers for cluster attacks. They don't work for us and can cause other problems.
There are some recommended Arizona doctors at the OUCH website.
Click this linky-thingy
http://www.ouch-us.org/chgeneral/doctors.htm
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Richr8
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Re: Hi, all! New guy from AZ
« Reply #2 on: Jul 7th, 2006, 10:54am » |
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Hi Ryan,
Welcome! You need to get that official diagnosis from a Neurologist and see that you get on a good plan to fight the beast. The Excedrin and percocet may numb you up a bit, but they do little to end cycles or abort individual attacks. In fact Excedrin will result in more (rebound) HAs if overused in addition to problems with the liver. Please read all the info at the link below and be sure to take it to your Doctor when you go. It outlines all of the known available treatments for CH, and BTW, you won't see percocet in there anywhere. Also, if you haven't tried Oxygen, hit the link on the left panel of this page. It's a miracle worker for many of us.
BTW-I'm just a little south of you in Tucson. I've been a sufferer (episodic) for fourteen years and never met anyone else that suffered until I found thi site in January of this year. The folks here are awesome and can answer any question you might have related to CH.
http://www.brightok.net/~mnjday/chtherapy.pdf
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Guiseppi
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Re: Hi, all! New guy from AZ
« Reply #3 on: Jul 7th, 2006, 11:36am » |
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Welcome to the site, I'm a little west of you in San Diego so almost as hot as your neck of the woods!
That being said, for heavens sake find a decent doctor and get some help! Get him to prescribe you oxygen, read the link on the left on how ro properly use it. Your doctor will not tell you how to use it right and it won't work. I can wake up at a kip 7 and be back asleep 15 minutes later pain free using the oxygen.
Print the link on the medications and get on a preventative. I use lithium, others use topomax, it's a trial and error to find what works.
Great to have you on board, I do hope you find something that helps, these things hurt!
Guiseppi
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MJ
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Re: Hi, all! New guy from AZ
« Reply #4 on: Jul 7th, 2006, 12:00pm » |
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on Jul 7th, 2006, 10:25am, RyanS2 wrote:Hi, everyone. Just thought I'd introduce myself.
in Mesa, AZ.
I'm definitely ready to see a doctor who knows about/specializes in CH. If anybody here knows of any Phoenix area doctors, I would really appreciate it. |
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Hi Ryan welcome.
2 knowledgable docs in your area I have seen.
Jeff Stier in scottsdale and a Dr Reese in scottsdale. Both are neuros and highly qualified.
Reese used to have an office by mesa lutheran as well, Not sure if he is still practicing. He diagnosed me when noone else could. back in the early 80s.
Add; Call the Mayo clinic too in Scottsdale they have a DR. list and are very up on CH.
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MJ
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Charlotte
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Re: Hi, all! New guy from AZ
« Reply #5 on: Jul 7th, 2006, 3:45pm » |
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Welcome aboard.
Please read http://med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu
All of the info on the menu to your left is very helpful.
Good luck finding an understanding dr. It will make a big difference.
Charlotte
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Linda_Howell
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Re: Hi, all! New guy from AZ
« Reply #6 on: Jul 7th, 2006, 3:59pm » |
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Ryan,
There are a lot of us here who live in your hot neck of the woods. Check out the link:
http://www.clusterheadaches.com/states.shtml
There is nothing like meeting up with another clusterhead who understands what you go through.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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alchemy
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Re: Hi, all! New guy from AZ
« Reply #7 on: Jul 8th, 2006, 7:40am » |
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Hey Ryan, just found your post. I'm just a little north of you in Phoenix near the cavecreek line. I drive down to Tempe twice a day. I'm checking out some doctors will let you know.
jim
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Linda_Howell
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Re: Hi, all! New guy from AZ
« Reply #8 on: Jul 8th, 2006, 11:36am » |
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I was hoping you'd see this post Jim. 
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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alchemy
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Re: Hi, all! New guy from AZ
« Reply #9 on: Jul 8th, 2006, 11:47am » |
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It took me abit but I got here
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Jonny
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Re: Hi, all! New guy from AZ
« Reply #10 on: Jul 8th, 2006, 5:37pm » |
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on Jul 8th, 2006, 11:47am, alchemy wrote:| It took me abit but I got here |
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Please, dont remind us!....LOL
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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alchemy
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Re: Hi, all! New guy from AZ
« Reply #11 on: Jul 8th, 2006, 6:23pm » |
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unsolved1
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Re: Hi, all! New guy from AZ
« Reply #12 on: Jul 13th, 2006, 11:24pm » |
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Hey Ryan ! Welcome to your new home on the net. Lots of great people that know clusters all too well. Read up! There's TONS of info.
Goodluck
UNsolved
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Summerbabe
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Re: Hi, all! New guy from AZ
« Reply #13 on: Jul 14th, 2006, 10:19am » |
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 Hi Ryan, welcome to the board , your symptoms sound like CH FOR SURE, You need to see a neurologists asap. Further more pain killers usually never work for us cluster heads ..they may do you more harm than good. It is part of the ferris wheel effect though with docs , they hear pain and presrcibe pain meds. However if you do get diagnosed with CH by a neuro..he will more than likely start you on an abortive channel blocker, and Immitrex or Zomig , and most of us here use Oxygen, yes we have tanks at our homes..its that bad!!! Let me tell ya though oxygen works...aborts the demon , I am up to 3-4 hits a night , exhausted , heading into mmy 6th week of this torture...we are here to help . see a neuro asap...check with your Insurance company for ones in your area, let us know how you are doing..All my best, Summer 
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TheDude
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Re: Hi, all! New guy from AZ
« Reply #14 on: Jul 17th, 2006, 1:55pm » |
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 Greetings from Chandler.
I'll keep this simple but as informative as possible. I am a 56 year old male.
I've had Cluster's for a good 20 years now and the one thing I can say from my experience is you never know when and for how long. I've found no treatment to prevent but believe there are remedy’s that help lessen the sessions and intensity. However, as Cluster’s are individual, roaming, and can alter their nature during a cycle, what appears to be their predictability and what works one day, can change and have no affect the next. One may experience a pattern like the same times each day. But I’ve experienced these can change with activity, atmospheric changes, diet, and one’s own attitude.
I’m not into whining about how terrible my pain is. It’s actually the same with everyone and to be honest, who cares about your pain when we have our own to deal with.
My current cycle started about June 28th in Albuquerque, NM., as just daily annoying sinus irritations. They’ve grown to being an actual cycle. It had been 6 years since my last cycle.
My current sessions of this cycle are what I call, “circling”. Like airplanes, they circle around looking for a place to land. The point of impact for mine are always in the same place. The left side of my face pinpointing the left temple. At their peak, they affect the entire left side of my head. I describe them as the creature from “Alien” trying to bust out of my head.
What has helped is maintaining a level of particular herbs. Note I said “maintaining” as one must keep taking them even if they feel relief. Here’s what gets me through the day.
With breakfast and before bed I have a “tea” made up of “Natural Calm” (magnesium), “Feverfew” with Dogroot extract, in a Ginger tea. A little honey or sugar can help. These help with nerve irritation and sudden blood vessel dilation.
4 to 6 times during the day I take “Gingko Biloba” extract capsules for blood circulation in the brain. One “Claritin” in the morning to reduce histamines. 3 to 4 “Quercetin” capsules also for histamines, and have a vile of Lavender and Peppermint oil to put on my left temple should I get an attack at work. At home I have a mix of 99% pure aloe gel and Cayenne pepper for my temple. I’d love to use this at work but the red Cayenne leaves a noticeable mark. During an attack, I can also put the Lavender/Peppermint oil into hot water to inhale.
The results so far are less frequent attacks (some days I have no attacks). Less intensity in more attacks than none (the “Alien” only knocks on the inside of my head). And a reduction in duration of more attacks than none (some dissipate in 5 minutes). I still have had a couple of lengthy (over 30 minutes) severe attacks. But only a couple instead of many to all. Standing in a hot shower helps pass the time. Being able to sleep reclined is touch and go. I spend more time sleeping upright in a nice, thick, comfy chair and ottoman.
But the biggest aid to helping me cope is my wife. Her help, love, and assistance makes the intolerable go by easier. Even though the attacks make you want to crawl away somewhere and be alone, having someone’s support is a big relief in itself. 
I hope this brings some idea’s to try and relief to y’all. As I mentioned above. What works for one may not work for another. What works today, may not work tomorrow. Cluster’s are as different as those who suffer with them. Drop me a line and let me know.
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