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Topic: Hello from Wisconsin! (Read 247 times) |
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superhawk2300
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Hello from Wisconsin!
« on: Mar 27th, 2006, 6:19pm » |
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Hello from Wisconsin, fellow cluster sufferers. I just stumbled on this site a few nights ago trying to figure out what I am going to do when I run out of meds again.
My name is Jamey and I’m 35 and have had clusters since my early twenties. I am episodic sufferer and currently in the middle of a cycle (yay). My attacks are always left sided, usually occur 2-3 a.m. always have the “premonition headache”, and always suck as$. Up until this time they usually lasted 4-6 weeks (much like waiting for a mail order product from a box of cereal) and my remission time is usually a couple years. This run is going on 10 weeks and the headaches are starting to change attack times (an increase in daytime attacks) and I am having more of them, and instead of abortive measures killing them cleanly I am being left with residual headaches of a lesser intensity that last entire days.
So that is the shadow side of my affliction. The gold side is my pain has taught me to truly relish life and I am driven to live a happy, passionate, experienced, meaningful life. I have a disconcerting amount of hobbies and activities I undertake, often overdoing things a bit and I can have an addictive personality, especially when in times free of pain, but just recovering. This is because I am trying to make the maximum use of pain-free time.
I have a great neurologist, he is a friend of mine from a men’s group I belong to. This has been a life saver tons of times. Anyone in the area that needs a referral should contact me. He specializes in headaches, in quite knowledgeable and always does more than I ever expected in regards to meds. When I did not have this resource I truly was in Hell – now I am in Hell with a friend who provides some relief – much better than alone!
Speaking of meds, I respond quite well to oral medication (Relpax is the best by far), quite similar to the Imitrex shots. Too bad my insurance company doesn’t respond as well as I do. I’ve used Imitrex shots and pills, Relpax, Frova, Migranal nose spray, and O2 for abortive use. I’d like to use more O2 than meds but I am at the point to where I’d down dog-shi.t sandwiches if they helped the pain as my meds run out. For preventative measures I’ve used prednisone and Verapmil. Neither work that well.
I am looking forward to being a member of this exclusively unfortunate group. I am an open book and am willing to share as well as receive.
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| « Last Edit: Mar 10th, 2008, 12:26pm by superhawk2300 » |
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medic1852
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This will only hurt for a little while!
 
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Re: Hello from Wisconsin!
« Reply #1 on: Mar 27th, 2006, 6:25pm » |
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Hello, and welcome...Sorry your here. My name is Rodger. There is a lot of good information here and lots of good folks who are willing to help. Hope you get what you need. Look over the column to the left and read there is information there. Hope you find what your looking for here...
Rodger
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Shoot Low Sherrif He's Riding a Sheltland Pony!
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Jonny
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Re: Hello from Wisconsin!
« Reply #2 on: Mar 27th, 2006, 6:36pm » |
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on Mar 27th, 2006, 6:19pm, superhawk2300 wrote:| I am looking forward to being a member of this exclusively unfortunate group. I am an open book and am willing to share as well as receive. |
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Those are by far the best two sentences I have read in a first post, in the nearly seven years I have been here!!
Welcome aboard, Bro....we got your back, and remember....the only stupid question is the one you dont ask.
.....................................Jonny
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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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Guiseppi
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Re: Hello from Wisconsin!
« Reply #3 on: Mar 27th, 2006, 6:55pm » |
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I'm 46 and an episodic too. I've had great success using lithium when on cycle, I weigh 200 pounds take 1200 mg daily. It blocks 80% of the total headaches, and I never get the night hits. For the daytime ones that break through the lithium I use the oxygen on a demand regulator, with 2 cafergots to keep the beast at bay!
Do hope you find some relief and welcome to the house!
Guiseppi
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nani
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Re: Hello from Wisconsin!
« Reply #4 on: Mar 27th, 2006, 6:55pm » |
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Hi Jamey. Welcome.  We have more than a couple of Wisconsinites here. In fact...our annual convention will be held in Milwaukee in July. I think it would be awesome for you (and your doctor!) to attend.
In the meantime, make yourself at home. I'm so glad to see the positive outlook you have. It's so important (and often difficult) to keep this in perspective.
Stick around, we're here for you, and we need you to be here also.
pain free wishes, nani
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Others may come and go, but MY power is MINE.
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superhawk2300
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Re: Hello from Wisconsin!
« Reply #5 on: Mar 27th, 2006, 11:32pm » |
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Thanks for the warm welcome!
I’ve had a shadow all day so I am just sitting here getting ready for tonight’s activities to begin. This is the longest cycle I’ve been through and I am starting to get depressed a bit, but I am looking forward to it being over!
I certainly will be at this year’s convention and look forward to meeting people! I don’t live but a 10 minute drive from where it will be.
I
Well, I guess it is time to face the music. I can drive a lot for work and I am exhausted so I need to try to find some sleep before I suck.
“Tanks” for any help on the O2….
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| « Last Edit: Mar 28th, 2006, 4:30pm by superhawk2300 » |
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