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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #250 - Aug 30^th, 2010 at 5:25pm

Dennis,

I hope this works out.

As i have posted many times, the hormone therapy seems to "hide" the CH and they run just below the surface of the pain perceptability and make us feel "healed"...

....i would agree that sweating the gel off before the "5 hour soak in" period could be a problem and missing a dose is an invitiation to trouble as the testosterone levels must remain as consistent as possible to be effective...that is why many that tried needles found relief sporatic as their levels were getting boosted and dropped off quickly allowing the CH to break through.

I hope your lifestyle gets back to normal soon and I trust you will report both positive and negative experiences with the hormone therapy.

Take care

Paul

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Paul
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DennisM1045

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Re: WHY don't we pay attention to this?
Reply #251 - Sep 1^st, 2010 at 12:29pm

MITYRARE wrote on Aug 30^th, 2010 at 5:25pm:

As i have posted many times, the hormone therapy seems to "hide" the CH and they run just below the surface of the pain perceptability and make us feel "healed"...

This is exactly how I'm thinking about it now. The CH is still there but the "normal" Testerone levels are keeping the attacks at bay. My inconsistency in applications caused the beast to "wake up" at peak cycle.

Until this most recent experience I was honestly still skeptical about wether HRT was really helping with my CH. I am now a believer.

So I'm being as consistent as I can be. The only days that apps vary are PT days. I don't like to put it on before therapy. They make me sweat and there is no need to expose the therapist who is working on my back. So I make all the appointments for 8am. This makes the app roughly 2 hours later days a week.

Quote:

I trust you will report both positive and negative experiences with the hormone therapy.

You can count on it Wink

This is the only way we learn.

At this point things are still well in hand. Had an attack Saturday night and another this morning. Neither were over the top and were easily dispatched with O2. Some shadows come and go most days. This is a far cry from the 3-4 hits a day I was getting. I'm still carrying my tanks everywhere.

-Dennis-

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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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Callico

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Re: WHY don't we pay attention to this?
Reply #252 - Sep 2^nd, 2010 at 12:20am

I LOVE it when things come together for one of us. I'm so glad for you guys! It hasn't worked quite that well for me, but I'm happy with about a 50 percent decrease in hits and about the same in intensity. Recently I bumped up my Kudzu by a third, and I've gone a month now without hitting the oxygen and over two weeks with only one 5hr Energy. Been doing the happy dance for sure! Keep it up guys. You give us hope.

Jerry

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"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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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: WHY don't we pay attention to this? Reply #253 - Sep 2^nd, 2010 at 1:07am Yay for you all!!! Good to hear!
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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 #254 - Oct 5^th, 2010 at 10:58pm I'm still headache free!! Paul
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: WHY don't we pay attention to this? Reply #255 - Oct 5^th, 2010 at 11:48pm And that sir...is a beautiful thing!!! Joe
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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 #256 - Oct 7^th, 2010 at 12:09pm As Lawrence Welk used to say, "Wunnerful, Wunnerful, Wunnerful"! May it never end! 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

Racer1_NC

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Re: WHY don't we pay attention to this?
Reply #257 - Oct 7^th, 2010 at 1:46pm

I started on the testosterone replacement gel around 3.5 weeks ago. It does seem to be helping with the CH some. Time will tell if it's really that...or just time for my high cycle to calm down.

One thing I am convinced of.....it takes several different approaches to keep it beat down....at least for me. Those that know me know what I do to keep the beast at bay. Mix and match people.......complete the puzzle.

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alleyoop

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Re: WHY don't we pay attention to this?
Reply #258 - Oct 7^th, 2010 at 2:28pm

Racer1_NC wrote on Oct 7^th, 2010 at 1:46pm:

I started on the testosterone replacement gel around 3.5 weeks ago. It does seem to be helping with the CH some. Time will tell if it's really that...or just time for my high cycle to calm down.

One thing I am convinced of.....it takes several different approaches to keep it beat down....at least for me. Those that know me know what I do to keep the beast at bay. Mix and match people.......complete the puzzle.

Two words for one more approach: clomiphene citrate

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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!

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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: WHY don't we pay attention to this? Reply #259 - Oct 8^th, 2010 at 12:35pm Interesting......more reading is in order.... Thanks...
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alleyoop CH.com Hall of Famer Offline Am I self-centered or is it just me? Posts: 1177 Hiawassee, GA USA Gender:	Re: WHY don't we pay attention to this? Reply #260 - Oct 8^th, 2010 at 1:44pm Let me know, and I can send you a copy of Dr. Rozen's article in Headache about using clomiphene citrate for CCH.
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bonkers CH.com Old Timer Offline What is THIS? Posts: 308 San Diego, California Gender:	Re: WHY don't we pay attention to this? Reply #261 - Oct 8^th, 2010 at 3:30pm Hi alley, Please send me the link to Dr. Rozen's article too, if you will. I can't find it on the net except in a pay-for form. Thanks. Ron
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Donna.m.har

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Re: WHY don't we pay attention to this?
Reply #262 - Oct 16^th, 2010 at 1:42pm

I'm so happy that some of you really did pay attention to this thread, did some research, found some answers.

My fellow ch affected people on this board were ticked off by my insisting that someone listen.....for 9 years I kept pushing this issue and finally one day, Paul came along and tried it.

Every time I come back here to see if this thread is still up, and it is, it just makes my heart sing. Thank you Paul for taking the lead in this and all of the leg work, research, follow up, etc. You and Dennis have given others hope in finding some kind of relief from this horrible pain.

I have been free of ch pain since 1987...completely pf, and I hope and pray that at least a few more of you will find the same relief.

lyg's and gals,
Donna Har

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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 #263 - Oct 16^th, 2010 at 5:13pm Hi Donna! Miss you around here! I'm glad you kept pushing this. It hasn't worked as well for me as for Paul and Dennis, but I'll take a 50% reduction and smile! Glad you are still PF. Hope the remission never ends. 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

DennisM1045

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Re: WHY don't we pay attention to this?
Reply #264 - Oct 18^th, 2010 at 12:40pm

So long as I'm a good boy and faithful with my applications, life is pretty darn close to PF.

I can't thank you enough Donna for being the stubborn SOB we all love.

Donna, if you hadn't posted this thread and if Paul hadn't followed up on it I would never have had my levels tested. And I wouldn't have found significant relief from these terrible cycles of pain.

-Dennis-

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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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Ontario, Canada
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Re: WHY don't we pay attention to this?
Reply #265 - Oct 18^th, 2010 at 11:33pm

Donna you are my hero. You championed this research and treament long before I found this forum...and I am so grateful for everyone that freely offers their experiences with alternative treatments.

Everyone is different, and the management of these things require experimentation.

My life has been changed.

Before testosterone I was unmotivated and less than happy during my cycles, over ate in between hits, and struggled to provide my family with a normal daily life.

Today i ended a record setting profitable work season, I am 100 pounds less than 4 years ago, I walked 8.5 miles today in less than two and half hours whistling as I enjoyed the lake and natural surroundings which are far more inspiring than suffering in my bedroom, and I spent time online sharing good news with my grown children, and i played with the dog...all normal stuff that often suffered during CH cycles.

Life is good.

Thanks Donna.

Paul

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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 #266 - Oct 19^th, 2010 at 12:18am Paul, I hope you feel better soon! I'm so glad for you. Jerry
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black CH.com Old Timer Offline I Love CH.com! Posts: 347 Greece,Athens Gender:	Re: WHY don't we pay attention to this? Reply #267 - Oct 19^th, 2010 at 1:33am Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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plateglass

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Re: WHY don't we pay attention to this?
Reply #268 - Oct 22^nd, 2010 at 9:38am

Hello all, just checking in with an update on the replacement therapy. I was on 1 tube of Testim a day and my levels went up slightly, but not into the normal range. So the doc put me on 2 tubes a day, 6 wks later we find out that the levels went even lower than before Huh

Has anyone else had this issue? We are going to test again in 6 wks, if it don't go up by then he suggested injections.

Thanks
Steve

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DennisM1045

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Re: WHY don't we pay attention to this?
Reply #269 - Oct 22^nd, 2010 at 12:02pm

Hi Steve,

Here are the rules I follow:
o Take a hot shower and thoroughly drying skin. This gets the pours open.
o Apply to upper back, shoulders and chest
o Rub it into your skin until the Gel feels tacky
o Allow Gel to dry completely before putting on a shirt. 10-15 minutes.
o Don't work out or do anything else that would cause you to sweat heavily for at least five hours after putting it on.

Beyond application consistency there is the option of trying the other Gel on the market. T-Gel. This is the one I use. Though most here seem to use Testim. My Dr has seen results vary from paitient to patient with the two products. If one doesn't work he'll try the other.

The thing my Dr didn't like about injections was the sawtooth pattern that is seen in the level over the course of time. Your T level spikes right after the shot and then tappers off rapidly until the next shot.

The advantage of the Gel is that it gives your a much smoother T level over time.

I hope you find a simple fix. Good luck...

-Dennis-

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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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plateglass CH.com Junior Offline Posts: 67 Seaside Heights, NJ Gender:	Re: WHY don't we pay attention to this? Reply #270 - Oct 22^nd, 2010 at 3:42pm Thanks Dennis, I will try changing the timing of the shower, and waiting a little longer to put on the shirt. The injections would be a last resort, (ie:changing to Tgel) and what you say about the peaks and valleys does make alot of sense. I'll be keeping you posted. Steve
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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 #271 - Oct 22^nd, 2010 at 8:40pm Good luck steve. I use Androgel and it absorbs and dries very quickly on my dry skin. There are also time released testosterone pellets available. 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 #272 - Oct 22^nd, 2010 at 10:19pm I'm like Paul with Androgel. However, I use most of mine on my belly and use the excess on my arms and shoulders or thighs. Like Dennis I try to do mine right after I shower. I also try very hard not to work hard enough to sweat it off! Jerry
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Kurtz

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Re: WHY don't we pay attention to this?
Reply #273 - Oct 26^th, 2010 at 12:53pm

Hi guys, new to the site but long time sufferer of CH (going on 12 years). I think I may have something interesting to add to this discussion...

I am a user of anabolic steroids, and have been on and off since my early twenties (I am 33 now). I am in the middle of a 12 week cycle of anabolic steroids and have been suffering another cycle of CH for the last 3 months or so.

The dosage and types of steroids I am taking are as follows:

- T400, injectable, dosage: 500mg/week. T400 is a blend of 188mg/mL of Testosterone Cypionate, 187 mg/mL of Testosterone Enanthate, and 25 mg/mL of Testosterone Propionate.

- Anavar (oxandrolone), orally administered, dosage: 30mg/day

While this still obviously creates a testosterone imbalance in my system, it is not a shortage but an excess.

Unfortunately I can tell you that the test does absolutely nothing to help with my headaches. The CH cycle I am in now has been particularly long and painful. I am currently taking 450 mg/day of Verapmil and it's effect is waning by the day/week. I am considering further increasing the Verapmil dosage myself out of desperation, mostly due to sleep deprivation; however, last time (last cycle, last year) I went to 3x 180 Verap pills a day I started to develop irregular heartbeats and I got the feeling my body was warning me to back off.

These things are killin me though. I am an engineer at a refinery and a shift worker. My job requires me to be at the top of my game at all times, and sleep deprivation does not play well into that. Most "nights" sleep occur in a series of 1 to 1.5 hour shifts as I am repeatedly awoken with an all too familiar dull throbbing in my head that quickly escalates into the unimaginable agony I'm sure you are all aware of.

Anyhow, glad to be here. If you have any questions regarding my steroid usage or anything else for that matter feel free to ask. Undecided

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« Last Edit: Oct 26^th, 2010 at 12:55pm by Kurtz »

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DennisM1045

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Re: WHY don't we pay attention to this?
Reply #274 - Oct 26^th, 2010 at 1:36pm

Hi Kurtz,

I'm not sure that the injectable / oral combo has been shown to be effective for CH. So I guess it doesn't surprise me that you would see no benefit.

Someone correct me if I'm wrong here.

The reason gel works (as it was explained to me) is because of the sustained testosterone levels over time. Injections done weekly provide a spike followed by a fast decay.

Also, like every other CH therapy, HRT dosen't help everyone.

Verapamil:

Have you had an EKG done? If you are on Verapamil you should have one annually. CH won't kill you but heart rythm issues can and this is one of the listed side effects of Verapamil. The good news is that stopping the Verapamil seems to reverse the effects.

IMO it is never advisable to be Quote:

increasing the Verapmil dosage myself out of desperation

Using the immediate release formulation instead of the sustained release formulation can really make a difference. It did for me anyway. Search around for the info posted by Bob Johnson on Verapamil.

I hope you find something that works soon.

-Dennis-

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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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