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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › WHY don't we pay attention to this?

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WHY don't we pay attention to this? (Read 133589 times)

Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: WHY don't we pay attention to this? Reply #425 - Apr 15^th, 2012 at 10:35pm I sincerely hope you never need it again! jerry
Back to top	"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown) IP Logged

Louise Barham CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 343 Columbia, South Carolina Gender:	Re: WHY don't we pay attention to this? Reply #426 - Apr 19^th, 2012 at 5:47pm I have no idea!! This is the first I've heard about this. I will be talking with Adam's neuro about it tho. TOMORROW!!! Thanks, Louise
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MITYRARE CH.com Old Timer Offline autocross racer Posts: 361 Ontario, Canada Gender:	Re: WHY don't we pay attention to this? Reply #427 - Apr 20^th, 2012 at 4:34pm Thanks Jerry. Paul
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DennisM1045

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One wave at a time!

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Haverhill, Massachusetts, USA
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Re: WHY don't we pay attention to this?
Reply #428 - May 3^rd, 2012 at 8:42pm

I fear T therapy may be losing its mojo for me. I'm wrestling with the beast at least once a week now. It could just be a strong cycle breaking through. It is that time of year.

Because of changes to my insurance O2 became very expensive this year. I've had to switch to Imitrex. I'm getting 3 injections out of a vial and get four vials a month for $15. And it is effective, but I miss my green friends.

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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MITYRARE

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autocross racer

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Re: WHY don't we pay attention to this?
Reply #429 - May 6^th, 2012 at 11:32pm

So sorry to hear Dennis. Hope the trex helps.

Any chance you can take a testosterone hoiday when you are in remission?

.... that way it may be more effective to jump back on the beast when the cycles come on...that is the strategy I am working with.... going off Test. does take an adjustment but within a couple weeks the body normalizes.

What about Batches therapy?

Paul

Paul
"car crazy"

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: WHY don't we pay attention to this? Reply #430 - May 9^th, 2012 at 8:59pm I'm already doing a version of Batch's therapy. Things are settling down again so it looks like it was just a couple of "interesting weeks". Only three Trex jabs got me through so it's all good. I am real reluctant to stop the T-Gel. It's become my wooby -Dennis-
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superhawk2300

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New Berlin, WI
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Re: WHY don't we pay attention to this?
Reply #431 - May 10^th, 2012 at 12:07am

Hey Dennis. Interesting. So how much to you attribute to the gel? I've got some experience with the gel and shots and I can say for sure to get the same effect from the gel as the shots you'd have to bathe in the stuff, but I got some lying around so if you say it works in a fairly certain way I'd start rubbin it back on.

If its the gel you use you probably rub it on your shoulders, back of your arms, and other hairless areas. How do you get it so your shirt goest stick to it!?!?!?!? Angry

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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #432 - Jul 17^th, 2012 at 9:29pm

Superhawk... if you are still around i will tell you that you can buy different concentrations of gel and it is alcohol based and dries just as quick as hand sanitizer... realily absorbs into the bloodstream

A half dose of the weak stuff on my shoulders is all i need to stop clusters in their tracks (after about two weeks of application)...if i miss one day they return....i stay on until i am in complete remission which an easily be checked with the gas sniff (i do not condone gas sniffing lol) or cologne sniff test (triggers for me)

I know of 11 now that have exactly the same result as I...but the majority do not respond to this therapy.

paul

Paul
"car crazy"

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MITYRARE CH.com Old Timer Offline autocross racer Posts: 361 Ontario, Canada Gender:	Re: WHY don't we pay attention to this? Reply #433 - Aug 29^th, 2012 at 3:08pm I'm Back! Started getting hits this past week and I am restarting my seasonal hormone therapy...hopefully it will work as it has in the past. fingers crossed Paul
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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: WHY don't we pay attention to this?
Reply #434 - Aug 30^th, 2012 at 1:30am

Hey Dennis,

How much vitamin D3 are you taking daily? With the added exposure to the UV-B in sunlight, I've had to increase my intake of vitamin D3 from 10,000 IU/day to as much as 30,000 IU/day to stay PF...

At the doses of vitamin D3 we're taking to maintain a serum concentration of 25(OH)D > 60 ng/mL, my thinking is the extra exposure to sunlight this summer is triggering the body's natural down regulation of vitamin D3 metabolism and that's what's required the additional increase in my daily intake and add vitamin A at RDA...

Have you added vitamin A and have you had your 25(OH)D level tested? The vitamin A might just make a difference.

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Callico

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Re: WHY don't we pay attention to this?
Reply #435 - Sep 3^rd, 2012 at 2:00am

Paul,
I'm sorry, my friend! i hope it kicks the beast to the curb quickly for you like it has in the past.

When I first used it before it worked really well at first, and then with diminished returns, just like everything else I've tried. I still have some and think about giving it a go again, but I'm diabetic, an my sugar hasn't been behaving very well lately ( or I haven't Embarrassed

) so I'm leery of trying it right now.

All the best to you, my friend!

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: WHY don't we pay attention to this? Reply #436 - Sep 3^rd, 2012 at 2:02am Dennis, so sorry to hear you are having troubles too! I don't understand the short-sidedness of insurance companies. O2 is so much less expensive than Trex, and they don't have the liability of covering heart issues brought on by O2 either. I hope you can kick it to the curb soon. Jerry
Back to top	"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown) IP Logged

MITYRARE CH.com Old Timer Offline autocross racer Posts: 361 Ontario, Canada Gender:	Re: WHY don't we pay attention to this? Reply #437 - Oct 2^nd, 2012 at 5:50am It took three weeks to get my testosterone dose correct but I am once again pain free with only slight shadows to remind me the beast stirs within. paul
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: WHY don't we pay attention to this? Reply #438 - Oct 2^nd, 2012 at 2:46pm Good for you! As usual, whenever I think I've found something that works it quits shortly thereafter. Going through one of the worst high cycles in years now. Jerry
Back to top	"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown) IP Logged

MITYRARE

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autocross racer

Posts: 361
Ontario, Canada
Gender: male

Re: WHY don't we pay attention to this?
Reply #439 - Oct 2^nd, 2012 at 6:43pm

Callico wrote on Oct 2^nd, 2012 at 2:46pm:

Good for you!

As usual, whenever I think I've found something that works it quits shortly thereafter. Sad

Going through one of the worst high cycles in years now.

Jerry

Sorry to hear Jerry...damn this disease.

Where are the research people when we need them to find an effective universal treatment?

Keep experiementing and perhaps go back and try some stuff which had some limited success before....for me Verapamil plus a high dose of Valproic acid gave me some relief for a cycle or two.

Cluster headaches suck... so sorry you are still suffering.

p

Paul
"car crazy"

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capt scotty

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Re: WHY don't we pay attention to this?
Reply #440 - Oct 12^th, 2012 at 3:23pm

I was a episodic cluster head for the last 4 years. This year i believe i became chronic. I was getting 5 to 6 cluster attack nights a week sometimes getting hit twice a night. Constant shadows for 3 months. I started getting testosterone injections a few weeks back my first injection got me 8 days pf longest i have had in two years according to my headache chart. After 8 days they came back and i got clusters for 3 straight nights and shadows all day. I got a second shot and i have been pain free for 11 days. My neuro told me if he keeps chronic cluster patients above 900 in total testosterone they will be pain free. I am going through a roller coaster trying to get levels right but have been really enjoying the pft.

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ttnolan

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beats me

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Re: WHY don't we pay attention to this?
Reply #441 - Oct 12^th, 2012 at 4:17pm

Thanks for reporting scotty... you are in the T study in Florida right? For anyone else in Florida... here it is.
(From the clusterbusters board)<<<
The Florida Center for Headache and Sports Neurology has a current ongoing open label study on the use of testosterone in episodic and chronic cluster headache. If you are interested in paraticipating please call 1-877 OI THROB or 772-337-7272. As this study is investigator driven and does not have any pharma or federal support we cannot offer any reimbursement, only free care.

I plan on presenting the results at the IHS meeting in Boston next year.

Dr. Frank Conidi
Director.
>>>

Edit: If looking for a good CH doc in Florida...

« Last Edit: Oct 12^th, 2012 at 4:30pm by ttnolan »

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capt scotty CH.com Newbie Offline I Love CH.com! Posts: 5	Re: WHY don't we pay attention to this? Reply #442 - Oct 12^th, 2012 at 7:06pm yes thats me i can't believe how good this is working for me. nothing else has worked!!
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capt scotty CH.com Newbie Offline I Love CH.com! Posts: 5	Re: WHY don't we pay attention to this? Reply #443 - Oct 13^th, 2012 at 7:50am In case people are wondering my total testosterone was at 460 which is well in the normal range however when boosted to 900 clusters went away as soon as i went under 900 they came back. That seems to be the magic number for me and a few other patients this neuro has.
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MITYRARE

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Ontario, Canada
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Re: WHY don't we pay attention to this?
Reply #444 - Oct 20^th, 2012 at 8:35pm

Scotty

So glad to hear you are responding to testosterone treatment. It has been working amazing for me for a few years now.
I use the androgel as it keeps my levels more constant than the needles .
I can achieve remission but it doesnt completely kill the disorder...I say it hides it just under the surface... if I test by pushing my triggers in a cluster period I can still precipitate a cluster... albeit a very shadowy low kip cluster.
All the best....and great to hear someone is actually studying this again. We need more than the Stillman study to convince others to try it.

Paul

Paul
"car crazy"

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capt scotty

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Re: WHY don't we pay attention to this?
Reply #445 - Oct 21^st, 2012 at 7:52am

That is a great way to describe it. I still don't push it with triggers. i have had more pft in the last month than i have had in years. He was gonna do the gel to keep me more constant and just do shots when i was getting hammered. With the kids and the price of gels we agreed i could do a 200mg shot once a week. I have not had a full blown cluster since i have started this treatment. I would say the strongest was still only a kip4 and that was when i let my t-levels get low again. I wish i found this thread earlier 4 years of hell was way too long.

« Last Edit: Oct 21^st, 2012 at 7:56am by capt scotty »

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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #446 - Oct 21^st, 2012 at 7:33pm

scotty

If the needles work then that is awesome for you.

I hear you re. kids and gel...cross contamination with gel is a concern so my endocrinologist recommends applying immediately before going to work so its inactive by the time you get home to the family

Will the doc let you give yourself the shots...or is it always a doctor office visit?

Paul

Paul
"car crazy"

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capt scotty

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Re: WHY don't we pay attention to this?
Reply #447 - Oct 22^nd, 2012 at 7:52am

I am giving myself the shots. He gives me a 10ml vile which last 10 weeks. We are still trying to figure out levels. The first shot my testosterone shot up to 2100 which is super high. He said that happens sometimes when you are first introduced to testosterone. I am gonna take 200mg a week for two weeks and have blood levels retested. From what he says once we figure out how to keep me at a pain free level I will only need to see him a few times a year. We are still not sure if i went chronic or if this is just a really hard episode.

« Last Edit: Oct 22^nd, 2012 at 7:55am by capt scotty »

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MITYRARE CH.com Old Timer Offline autocross racer Posts: 361 Ontario, Canada Gender:	Re: WHY don't we pay attention to this? Reply #448 - Oct 23^rd, 2012 at 6:39pm Thats great to have the convenience of needling at home. It took me 30 years of suffering to find this thread but what a thread it has been for me...life changing....so you have a head start. Please keep us up to date with your progress. Paul
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MITYRARE CH.com Old Timer Offline autocross racer Posts: 361 Ontario, Canada Gender:	Re: WHY don't we pay attention to this? Reply #449 - Dec 3^rd, 2012 at 10:12pm bump
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