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Helpful Hints - MUST READ!! (Read 17079 times)
nani
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Re: Helpful Hints - MUST READ!!
Reply #50 - Apr 17th, 2008 at 10:41pm
 
email sent, Torrey.  Smiley

nani, in NM
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ak_baumgard
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Re: Helpful Hints - MUST READ!!
Reply #51 - May 13th, 2008 at 9:14am
 
Hello, I'm new(not new to roadkill headache pain though!) I want to ask  the following:

Are any of you on the autism spectum,as I am?

I don't find topamax listed as a preventative very often.  I was on it for 5 yrs, up to 500 mg a day. Weaned myself off a few months ago, but the number of my ch's haven't decreased.

Has anyone been taking topamax or diagnosed as having temporal lobe seizures(what I was prescribed for)?

I take Midrin, an old headache RX as an abortificant; it helps most of the time AND it is CHEAP. Anyone else had success with this?

Hint:  During an attack I often use a q-tip loaded with a gob of white Tiger Balm up the nostril of my affected side; this often helps and surprisingly, doesn't burn.

Well, I hope to figure out soon how to add a photo and some personal information to introduce myself properly.

By the way I gave up Imitrex shots years ago; I called it the drug from hell as it felt like I was being scalped after I administered it.
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Brew
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Re: Helpful Hints - MUST READ!!
Reply #52 - May 14th, 2008 at 9:20pm
 
What's an autism spectum?

Can't tell you if I'm on it if I don't know what it is.
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judyjudyjudy
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Re: Helpful Hints - MUST READ!!
Reply #53 - May 15th, 2008 at 12:57pm
 
I used Midrin for several years, and it worked fabulously, but then stopped, as many other cluster wonders do.

What's with the white Tiger balm?  That's fascinating.  What can you tell me about it?
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« Last Edit: May 15th, 2008 at 12:58pm by judyjudyjudy »  
 
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Paige_H.
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Re: Helpful Hints - MUST READ!!
Reply #54 - May 15th, 2008 at 1:00pm
 
judyjudyjudy wrote on May 15th, 2008 at 12:57pm:
I used Midrin for several years, and it worked fabulously, but then stopped, as many other cluster wonders do.

What's with the white Tiger balm?  That's fascinating.  What can you tell me about it?


1.  I loved using Midrin.  It worked a decent part of the time, plus it helped my migraines also.  But I can't seem to get a doc to write it now.  It didn't work during the peak of my cycle though

2.  Where the heck can I find Tiger balm?  I have used it once, someone had some and let me try it.
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Chad
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Re: Helpful Hints - MUST READ!!
Reply #55 - Aug 5th, 2008 at 1:25pm
 
ak_baumgard wrote on May 13th, 2008 at 9:14am:
Hello, I'm new(not new to roadkill headache pain though!) I want to ask  the following:

Are any of you on the autism spectum,as I am?

I don't find topamax listed as a preventative very often.  I was on it for 5 yrs, up to 500 mg a day. Weaned myself off a few months ago, but the number of my ch's haven't decreased.

Has anyone been taking topamax or diagnosed as having temporal lobe seizures(what I was prescribed for)?

I take Midrin, an old headache RX as an abortificant; it helps most of the time AND it is CHEAP. Anyone else had success with this?

Hint:  During an attack I often use a q-tip loaded with a gob of white Tiger Balm up the nostril of my affected side; this often helps and surprisingly, doesn't burn.

Well, I hope to figure out soon how to add a photo and some personal information to introduce myself properly.

By the way I gave up Imitrex shots years ago; I called it the drug from hell as it felt like I was being scalped after I administered it.
My nuerologist from years ago tried to give me Topamax, but I never took it when my wife found out short term memory loss is a possible side affect  :) I'm very much against pills, but I know when we all feel this kind of pain, anything will do.

I use Imitrex usually on the first sign or onset.  It knocks out the pain within 20-30 minutes if taken in time.  Sometimes I take it before bed to get a good nights rest.  This is only 50 mg.  I usually get (2) 2-3 week bouts/year.
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Izzy
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Re: Helpful Hints - MUST READ!!
Reply #56 - Oct 8th, 2008 at 4:49pm
 
Kipp really helped us & we never even knew him. What a legacy. Thank you!!!
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Farzad
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Re: Helpful Hints - MUST READ!!
Reply #57 - Feb 18th, 2009 at 10:52pm
 
Dears
very useful tips, specially for the first visitors , I also agree and vote to save this very useful tips and support the idea to keep it.

regards

Fazrad
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Farzad
 
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onepfday
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Re: Helpful Hints - MUST READ!!
Reply #58 - Apr 17th, 2009 at 10:12am
 
Topamax never worked for me, Imatrex also made things worse in my head, but i could have had it too late into the ache too?! Midrin was wonderful, but it also has stopped working.   You arent alone. What is the balm?
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RareBird
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Re: Helpful Hints - MUST READ!!
Reply #59 - Sep 2nd, 2009 at 12:39pm
 
Dear OP,

Thanks A LOT for the hints!

Based on my CH knowledge, these hints ARE actually useful.
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Pixie-elf
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Re: Helpful Hints - MUST READ!!
Reply #60 - Sep 19th, 2009 at 10:16pm
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

You can get Tiger balm at some pharmacies, or, at that link to Amazon.com

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As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It's saved my life.
 
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Re: Helpful Hints - MUST READ!!
Reply #61 - Dec 25th, 2009 at 6:41am
 
here's what i do when ivegot no meds, ice back of neck you know the spot/10 min rarely that kills it/ then hot hot shower on the head intermittent with just relaxing withwater hittingmyback/ then usually 5 10 min back on the ice. just did it and I only got to about kip 4
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Tortured  Tom
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Re: Helpful Hints - MUST READ!!
Reply #62 - Mar 14th, 2010 at 8:09am
 
[quote author=77787F63642622100 link=1140471647/0#0 date=1140471646]

•      Twinge; Short burst of pain usually to fast to produce side effects.
•      Phantom; Body experiences all symptoms of an attack without measurable pain/burning sensation. (Droopy eye, Running nose, and Tearing.)

These were very useful, I'm glad others get these!
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Kat
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Re: Helpful Hints - MUST READ!!
Reply #63 - May 20th, 2010 at 7:12pm
 
Just read your message for the second time ... magnificant ... twinge is what i feel between attacks, good word for it, painful but not unbearable.
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Kat
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Re: Helpful Hints - MUST READ!!
Reply #64 - May 20th, 2010 at 7:17pm
 
here's what i do when ivegot no meds, ice back of neck you know the spot/10 min rarely that kills it/ then hot hot shower on the head intermittent with just relaxing withwater hittingmyback/ then usually 5 10 min back on the ice. just did it and I only got to about kip 4 [color=#ff3I also use ice on my neck, yeah, that spot! and I also use it to cool me off.  I get very hot, like lava throwing thru my veins when i have CH so I am reluctant to jump into hot water.[/color]
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Re: Helpful Hints - MUST READ!!
Reply #65 - Jan 15th, 2011 at 1:13am
 
Love this post, love it

The V.A.
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Dr J
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Re: Helpful Hints - MUST READ!!
Reply #66 - Jun 15th, 2011 at 8:00pm
 
This is a great site and I am sure I will become a significant contributor - I am a surgeon who has had clusters for the last 15 years but only had a proper diagnosis for the last 8 years.  The terminology works well and as a sufferer can definitely relate to shadows/phantoms etc.  I regard myself as lucky having twice yearly episodic attacks - roughly march-may/ sep-dec - but have 1. something that helps: sumitriptan 6mg s/c - and 2. a supportive wife!
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Guiseppi
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Re: Helpful Hints - MUST READ!!
Reply #67 - Jun 16th, 2011 at 9:07am
 
While I am sorry you have the beast for a companion....it's awesome to have a voice like yours in the medical field. As you discovered in your diagnostic journey, lack of CH awareness is still one of our biggest hurdles.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

If you haven't already, take a sec and read this link. How we use oxygen flies in the face of how organized medicine feels it should be used. We have found that getting 100% 02 to the lungs, at a rate to encourage hyperventilation, will abort attacks in as little as 5 minutes. Since you probably have unlimited access to 02 at work,  Wink and there are no side effects to worry about, certainly worth a shot. Welcome to the board!


Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Linda_Howell
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Re: Helpful Hints - MUST READ!!
Reply #68 - Jun 16th, 2011 at 11:26am
 
Hello and welcome Dr. J,

   If I might offer a suggestion for future postings...All the threads where we're writing right here... specifically "Helpful hints" and others are in a static or fixed area.   Most folks who have been here a while have already seen them so it gets very little exposure.   

In the three catagories of CH specific, Getting to know you & Meds, treatments & therapies..it's much better to post under "BOARD TOPICS" where it will be seen better. 

We most certainly look forward to your input on this condition we all have in common and especially from the viewpoint of a physician.  Over the years, we have had several physicians on our side, so to speak, but none that were actual sufferers themselves. 

Dr. Peter Goadsby, in fact..will be making a presentation at our annual convention again this year which will be July 14th to the 17th. in Nashville, Tn.   If there is anyway you can be there, you won't be disappointed, I guarantee it.  I'll be glad to provide more specifics if you'd like.

Linda
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Re: Helpful Hints - MUST READ!!
Reply #69 - Jun 23rd, 2011 at 11:47am
 
Dr J wrote on Jun 15th, 2011 at 8:00pm:
This is a great site and I am sure I will become a significant contributor - I am a surgeon who has had clusters for the last 15 years but only had a proper diagnosis for the last 8 years.  The terminology works well and as a sufferer can definitely relate to shadows/phantoms etc.  I regard myself as lucky having twice yearly episodic attacks - roughly march-may/ sep-dec - but have 1. something that helps: sumitriptan 6mg s/c - and 2. a supportive wife!

I have my doubts.  Ya spelled it wrong,  it's sumatriptan.

       Potter
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Re: Helpful Hints - MUST READ!!
Reply #70 - Aug 16th, 2011 at 6:08am
 
Thank for the info
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Re: Helpful Hints - MUST READ!!
Reply #71 - Sep 1st, 2011 at 5:46pm
 
thank you very much for this clear, concise post! it, this site and you fine people are so very helpful to all us newbies!
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Re: Helpful Hints - MUST READ!!
Reply #72 - Sep 9th, 2011 at 1:01pm
 
Glad to see someone knows what a chronic cluster headache is, mainly the duration. The problem that remains is; how does one explain to loved ones what you are going through.
motO2
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Re: Helpful Hints - MUST READ!!
Reply #73 - Jan 20th, 2012 at 10:06pm
 
Smiley I just spent over an hour watching my son suffer. I have not had a cluster episode in a few years now. He is in the worst it has been so far. I read your post and I will have him read it and hopefully he will join here and share and find a way to deal. He has 02 and now we can start to find something that may help. Red Bull also helps. It was a great post and I want to thank you. For those who are new to this, they won't feel so lost. Hugs and thanks
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Re: Helpful Hints - MUST READ!!
Reply #74 - Jul 11th, 2012 at 12:21am
 
I need Help I am in a Cluster Period they started the end of May I have tried everything I need to BREAK THIS Fn CYCLE HELP HELP
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