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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 #150 - Nov 20^th, 2009 at 10:40pm Setting a new personal remission record every day. PSA tests still great. Had a polyp removed in a routine colonoscopy last week (a frequent occurrance for me)...just keeping the fingers crossed that the pathology comes back OK so i can continue hormone treatment. 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 #151 - Nov 21^st, 2009 at 12:10am great news Paul! You have no idea how happy I am for you! I'll be praying about that pathology report. Jerry
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Jrcox CH.com Veteran Offline I Love CH.com! Posts: 123 FARMINGTON, MN Gender:	Re: WHY don't we pay attention to this? Reply #152 - Nov 21^st, 2009 at 11:44am Wow post is super long but fantastic info. I apologize for being redundant. But in summary, I want to try this test so I can report back my findings. I need to get a blood test to look at testostorone. Do I want to do this in cycle and out or both. Thanks Jrcox
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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 #153 - Nov 21^st, 2009 at 2:05pm Jason, I would think in cycle, because it seems to me most effective for those of us who are chronic. just my $.02 Jerry
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Re: WHY don't we pay attention to this?
Reply #154 - Nov 26^th, 2009 at 9:41pm

Jrcox wrote on Nov 21^st, 2009 at 11:44am:

Wow post is super long but fantastic info. I apologize for being redundant. But in summary, I want to try this test so I can report back my findings. I need to get a blood test to look at testostorone. Do I want to do this in cycle and out or both.

Thanks

Jrcox

If you have to pay for the test, then In-Cycle. If you are one of those that testosterone will help then your testosterone levels would be lowest in cycle.

For those in Canada where tests are free or for those of you elsewhere with a insurance plan that pays for tests, it is wise to have a baseline test out-of-cycle so that your doc can assess the hormone change once again when you are in cycle.

Hormones only help some...and if you are prone to dropping testosterone levels while in-cycle, you may be a better candidate for treatment than one whose levels are balanced both in and out of cycle.

P

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Re: WHY don't we pay attention to this?
Reply #155 - Nov 26^th, 2009 at 10:01pm

LONG SIGNIFICANT POST

I experienced an unwanted visit from someone from my past last night. Sad

As i have mentioned before in this long thread, I have experienced slight faint shadows that would indicate when I was in my cycle while on this hormone therapy, but i have been 100% CH free since december of 2008....and I am thankful for every pf day.

Last night i awoke to the head/eye pain that I have been so familiar with for 30 years. Only a kip 5 but very disappointing all the same. Cry

I will continue on with my hormone therapy with a positive attitude in the hopes that this was just a rare exception.

I have always felt that hormone treatment is a therapy for CH... not a cure...just another tool that may work for some.... just as oxygen therapy works for many, and just as pills, caffeine/taurine drinks, or illegal substances work as coping therapies for others.

I am absolutely thrilled with the longest remission ever experienced in 30 years...it was a much needed rest....the question is, do I get another 11 months before the next CH?

Stay tuned.

Fingers permanently crossed!
Paul

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« Last Edit: Nov 26^th, 2009 at 10:09pm by MITYRARE »

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sue_g CH.com Junior Offline I love YaBB 1G - SP1! Posts: 76 x0\|Gananoque\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: WHY don't we pay attention to this? Reply #156 - Nov 27^th, 2009 at 5:38am Sorry to here about that Paul... I just want to say: Thank you for all the info you have bought us. I will be meeting with my neuro next Thurs, Dec 3rd and have collected much information from you and the others. Hopefully the unwanted visit does not return and you get back on track pf.
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Re: WHY don't we pay attention to this?
Reply #157 - Nov 27^th, 2009 at 12:43pm

I have been tested both in and out of cycles do to my meds I'm on for my seizures they have not been hugely different for me granted a little lower during the cycle but never enough for the doc to want me to go on hormone therapy but that is just me like somethings work for some while others something totally different works

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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: WHY don't we pay attention to this? Reply #158 - Nov 27^th, 2009 at 1:37pm I was tested extensively for imbalances. Used bio-identical hormone replacement compounded specifically for me by the pharmacist for 2 years and I never had a break from my clusters. I did feel better, but stopped due to the long term possible side effects.
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MattyAA CH.com Veteran Offline I Love CH.com! Posts: 242 Poland, EU Gender:	Re: WHY don't we pay attention to this? Reply #159 - Nov 27^th, 2009 at 4:41pm I think I did not read it correctly, so what kind of hormone you used Joni and did they help in reducing ammount of headaches or?
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Re: WHY don't we pay attention to this?
Reply #160 - Nov 27^th, 2009 at 7:36pm

MattyAA wrote on Nov 27^th, 2009 at 4:41pm:

I think I did not read it correctly, so what kind of hormone you used Joni and did they help in reducing ammount of headaches or?

"I was tested extensively for imbalances. Used bio-identical hormone replacement compounded specifically for me by the pharmacist for 2 years and I never had a break from my clusters. I did feel better, but stopped due to the long term possible side effects."

I don't remember what all was in my bioidentical replacement therapy, but I do remember that Testosterone was one of them. It has been a few years ago. It was no help.

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MattyAA CH.com Veteran Offline I Love CH.com! Posts: 242 Poland, EU Gender:	Re: WHY don't we pay attention to this? Reply #161 - Nov 27^th, 2009 at 9:55pm Oh alright, thanks for explaining, english isn't my native language so... some shortcuts may be hard for me to understand.
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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 #162 - Nov 27^th, 2009 at 10:21pm Paul, Sorry for the visit. Hope it was just a rogue hit that got through, and you don't get any more. Will be watching with interest to see how you get on from here. Jerry
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Re: WHY don't we pay attention to this?
Reply #163 - Nov 30^th, 2009 at 6:11pm

Callico wrote on Nov 27^th, 2009 at 10:21pm:

Paul,

Sorry for the visit. Hope it was just a rogue hit that got through, and you don't get any more. Will be watching with interest to see how you get on from here.

Jerry

Thanks Jerry,

I hope you are correct that is was just a random "rogue hit" that got though the hormone barrier...not as much as a whisper of a shadow since.

You knowI willcontinue to post milestones in remission as well as any "rogue" hits or new cluster periods if and when they happen.

Take care.

Paul

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Re: WHY don't we pay attention to this?
Reply #164 - Dec 12^th, 2009 at 9:40pm

One year ago today I began Testosterone therapy for my CH.

...headaches diminished immediately and December 30th 2008 was my last CH (until one random one broke thru a few weeks ago).

Longest remission ever for me.

I can still tell when "in cycle" as distant faint shadows can be felt with clock-like regularity...they just do not break thru...Ok maybe once in a year!

Paul

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« Last Edit: Dec 12^th, 2009 at 9:41pm by MITYRARE »

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Grandma_Sweet_Boy CH.com Alumnus Offline What Goes Around Comes Around! Posts: 4496 Georgetown,Ontario Gender:	Re: WHY don't we pay attention to this? Reply #165 - Dec 12^th, 2009 at 10:36pm That's such good news Paul. Glad you seem to have found your magic bullet. Here's hoping that rogue hit doesn't ever find you again. Carol
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Re: WHY don't we pay attention to this?
Reply #166 - Dec 12^th, 2009 at 11:29pm

MITYRARE wrote on Dec 12^th, 2009 at 9:40pm:

One year ago today I began Testosterone therapy for my CH.

...headaches diminished immediately and December 30th 2008 was my last CH (until one random one broke thru a few weeks ago).

Longest remission ever for me.

I can still tell when "in cycle" as distant faint shadows can be felt with clock-like regularity...they just do not break thru...Ok maybe once in a year!

Paul

I have had that happen a few times when I started a new medication...it's a great break, but only until they learn how to get around it! The longest was 3 years.

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Re: WHY don't we pay attention to this?
Reply #167 - Dec 13^th, 2009 at 9:02am

Joni...I hear you, and I hope you are wrong.

Regardless, it is about quality of life ... and this past year has been a gift... I have been able to attend social functions, purchase a couple more race cars and actually be fit enough to race them, enjoy Christmas and Easter celebrations, and go for winter walks without CH following me home.

I do appreciate every PF day and should CH return, I can still feel great about this last/best year that i have enjoyed.... more than any other in the past 30 years.

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 #168 - Dec 26^th, 2009 at 9:11pm WOW...two consecutive Christmas celebrations without a headache! Paul Breaking my personal best headache-free record each and every day!
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MattyAA CH.com Veteran Offline I Love CH.com! Posts: 242 Poland, EU Gender:	Re: WHY don't we pay attention to this? Reply #169 - Dec 26^th, 2009 at 9:30pm Keep 'em comming Mitty! Cheers
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Re: WHY don't we pay attention to this?
Reply #170 - Jan 18^th, 2010 at 10:42pm

I was contacted by a Doctor some time ago regarding my testosterone therapy. He has two intractable patients that he had become frustrated with finding no solution.

I advised that they try the high flow oxygen with non-rebreather mask and see how that goes. One had already tried that (and I think is on this forum).

I also relayed my personal hormone therapy experience (so far so good...fingers crossed)

I received this email today...

"Hi Paul,

I have had great success with the testosterone in patients. What dose of the androgel did you switch to once the headaches went away with the injections?

Thanks"

To set the record straight, I never received injections first, but just started directly on the gel applications for a more even blood testosterone level. Some of the studies I referred to the Doc. some time ago suggested injections and I figure that is how he decided to approach the issue.

Testosterone is highly regulated here in Ontario, Canada and a gel prescription cannot be refilled one day before the dose runs out...so some doctors try by injection in their office and see what result they get before prescribing the gel which sells for a fortune on the black market here.

Thought this may be of interest to followers of this thread.

Paul

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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 #171 - Jan 21^st, 2010 at 2:10pm Count me in. Based on this thread and associated research I had my T level checked. 116 - should be at least 280. I started gel therapy today. -Dennis-
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Re: WHY don't we pay attention to this?
Reply #172 - Jan 22^nd, 2010 at 8:54am

DennisM1045 wrote on Jan 21^st, 2010 at 2:10pm:

Count me in. Based on this thread and associated research I had my T level checked.

116 - should be at least 280.

I started gel therapy today.

-Dennis-

My fingers are crossed for you Dennis

...how much gel are you starting with? (I have always been on 5 g... also known as 4 pumps of the bottle once per day...2 pumps on the left and 2 pumps on the right)

Please keep us posted...the next two to three weeks should show promise if you are one of the types that respond to testosterone for Clusters.

Paul

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DennisM1045

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Re: WHY don't we pay attention to this?
Reply #173 - Jan 22^nd, 2010 at 12:51pm

I'm on Testim. Not Androgel. It comes in single dose tubes. I'm not sure of the dosage. I'll have to look at it tonight.

I'm reading a lot of concern over accidental exposure. It has my wife a bit freaked out. From what I've read, if you wash your hands thoroughly and don't let anyone come in contact with your skin after application (while it's still wet) you should be safe. Right?

-Dennis-

-Dennis-

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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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Re: WHY don't we pay attention to this?
Reply #174 - Jan 22^nd, 2010 at 1:15pm

DennisM1045 wrote on Jan 22^nd, 2010 at 12:51pm:

I'm on Testim. Not Androgel. It comes in single dose tubes. I'm not sure of the dosage. I'll have to look at it tonight.

I'm reading a lot of concern over accidental exposure. It has my wife a bit freaked out. From what I've read, if you wash your hands thoroughly and don't let anyone come in contact with your skin after application (while it's still wet) you should be safe. Right?

-Dennis-

-Dennis-

And signing your name twice is not one of the side-effects. I don't think.

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