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Topic: Glad I'm not alone. (Read 282 times) |
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Gumby
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Glad I'm not alone.
« on: Mar 20th, 2005, 7:43pm » |
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I've been dealing with this for years and never realized how many people suffer from this. Just having someone else to talk to that understands is such a relief. 
Everyone else seems to think it's all "in my head".
(no pun intended)
Now that I'm in the club, would someone please give me the secret to breaking the cycle I'm in......
I won't tell.
Promise. 
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Kris_in_SJ
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There's no place like home.
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Re: Glad I'm not alone.
« Reply #1 on: Mar 20th, 2005, 7:48pm » |
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Hi Gumby,
There are very few secrets here. Everyone shares openly. It would help if we knew a little more about you. Are you episodic? What meds are you on now? What have you tried that works? What have you tried that doesn't work? How long have you been in cycle now and how long do they usually last?
We'll do the best we can to help.
Hugs,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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Gumby
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Re: Glad I'm not alone.
« Reply #2 on: Mar 20th, 2005, 8:04pm » |
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Thanks for the support but I was just kidding about the "super secret handshake".
I saw a neurologist a couple of years ago and tried a litany of meds, none worked. The bottom line seemed to be that I would eventually grow out of them.
(Still waiting)
I'm just happy to have people to talk to that can relate. (Actually I wish no one else could ever relate, but you know…)
I'm going back to my doctor on Tues to try and find another neurologist so we'll see.
I'm going back to my doctor on Tues to try and find another neurologist so we'll see.
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BobG
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Re: Glad I'm not alone.
« Reply #3 on: Mar 20th, 2005, 8:06pm » |
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Hey Gumby, glad to see you here but hate the reason.
Go to the Medications, Treatments, Therapies section of this site and scroll to the heading ‘no longer chronic’. It’s a great string on alternative treatment.
Or go to www.clusterbusters.com
Also you can scroll to the heading ‘5-HT activity in Kudzu’ for a discussion on another treatment.
Best of luck to you.
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Stay stressed. Never relax. Never sleep. Ever.
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kingsiren
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Re: Glad I'm not alone.
« Reply #4 on: Mar 21st, 2005, 12:28am » |
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Hi Gumby I went through the same experience for a few years, incompetent doctors, misdiagnosis, then they I went into remission they claimed success....morons. I have had luck in the past with Prednisone but this cycle has been particulary vicous and it hasn't helped. My doctor has started me on Topamax and I have to say that although the side effects suck I have only had a few attacks since I started it so it looks like it's working so far. Print out some of the info on here and bring it to your doctor and the new Neuro. Don't be afraid to ask for a second and even a third opinion, people have no idea how much we suffer.
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I have an ice pick being repeatedly stabbed through my eye, into my brain while 4160 Volts run through it as someone squeezes my eyeball. You get headaches buddy, I get the Beelzebub on Crystal Meth.
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Ellick
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Re: Glad I'm not alone.
« Reply #5 on: Mar 21st, 2005, 12:14pm » |
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Hi Gumby,
If you have'nt I recommend you try 02 while you check out the other stuff. I managed with lots of work to get off all the meds. Gives me the opportunity to try the alternatives.
In my opinion the treatments being tried outside of orthodox medication are much safer on the body and brain.
Good luck and look at medics under a microscope. Tricky lot.
ET.x
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ET
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Gumby
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Re: Glad I'm not alone.
« Reply #6 on: Mar 21st, 2005, 5:42pm » |
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Ok It's official. I am in the midst of the worst cycle I've ever had. I have read a lot in the past couple of days and would like to learn more about what has worked for other people. I am looking into alternative solutions but it doesnt' appear I know anyone who could help.
If anyone has any info and would like to E-mail me directly
gumbytm@msn.com
Pleas help this is my forth headache today. 
Thank you all.
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E-Double
CH.com Alumnus
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Re: Glad I'm not alone.
« Reply #7 on: Mar 21st, 2005, 6:03pm » |
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Here is a great resource to know like the back of your hand
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
Wishing you the best !!
Best,
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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jokrs2
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Eventually He will make us pain free!
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Re: Glad I'm not alone.
« Reply #8 on: Mar 21st, 2005, 7:01pm » |
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I'm just speaking for myself, but I take Kudzu (Planetary Formulas Kudzu Recovery) 2 pills 3x daily and I am having major success. Used to be kip 8-10 every day for a long, long time with hardly ever a break. Now seems to be being held at kip-3 or below. I can feel when the beast is ready to strike but the kudzu is closing the door on him. Still getting HA's but its just from my neck damage. The 2 are so different. Hope you find something. Joe
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Given strength, courage & a sound mind!
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Gumby
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Re: Glad I'm not alone.
« Reply #9 on: Mar 21st, 2005, 7:10pm » |
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Yea, I beat another one.
*looks forward to several pain free hours*
*grins like a fool*
Eric, thanks for the link, great read. I meat my new neurologist tommorow so at least I'll have some info.
I'm also going to check out the Kudzu.
May even go the clusterbuster route in hopes of at least preventing my next cycle.
I wish I had found this place a few years ago. I wouldn't have waited so long to get help if I had known there were so many options.
How long do neurologists go to school?
Don't they teach them this stuff?
Now if you'll excuse me I'm going to go back to grinning like a fool for a while.
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Giovanni
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Re: Glad I'm not alone.
« Reply #10 on: Mar 21st, 2005, 7:44pm » |
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Hi Gumby,
Sorry you are here, but welcome. I've personally tried dozens of traditional medications with little or no luck with measurable positive results. My best bottom line treatment has been with the clusterbusters with about 90-95% relief.
www.clusterbusters.com
Floridian has come up with a number of various herbs including Kudzu which appears to have helped many. Floridian is probably the best read researcher we have here. Here's a link to his book on cluster headaches:
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=HomePage& ;PHPSESSID=f6ffaf78f85197c6225c1d9e3f36c090
In the past I used hundreds of imitrex injections which would abort a headache within 5 minutes. I found that the volume of injections that I was taking would prolong my cycles by weeks perhaps months. A good abortive for me is O2 and appears to have little or no bad effects.
Whatever you do, the best of luck to your quick relief.
John
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Glad I'm not alone.
« Reply #11 on: Mar 22nd, 2005, 3:07pm » |
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Gumby,
warm welcome to CH "club"... 
I wish none of us had the membership, but as we do, we might as well enjoy while we're here, right?
Here you can find an answer everything you possibly want to know about treatments and meds other clusterheads have tried and always find someone to talk to. 
Best wishes & PFDays,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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