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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #175 - Jan 23^rd, 2010 at 12:07am

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-

Hands are good after washing... BUT ...No direct contact with the "site of your application" with the opposite sex for five (5) hours after application...or you could risk your wife/girlfriend/significant other, or all three, getting more hairy and deeper voiced. Shocked

Once you find the best application time that safely protects your partner from absorbing any hormone, it becomes routine...or you learn to have sex without touching certain areas of your body (application sites)...which can be risky and add an element of adventure to your sex life. Wink

Payl

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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 #176 - Jan 27^th, 2010 at 3:05pm Any worries about laundry? I wait till the application site is dry before putting on a shirt but there has to be some transfer. -Dennis-
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candid

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Guess who's got extremely low testosterone levels
Reply #177 - Feb 9^th, 2010 at 6:17pm

Guess who just got their testosterone test results back.
Me!
Guess who's testosterone levels are extremely low!
Guess who has fucking hope. And yes i know that if it doesn't pan out i'm going to crash hard but hey i believe everything happens for a reason and mightrare you may have saved my life. i live in Ontario too and if this works out...well we're going to have to have a long talk on how i can show you my gratitude.

Thank you so much for posting this I simply cant thank you enough.

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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 #178 - Feb 9^th, 2010 at 10:24pm Very interesting Sam I hope your doctor uses your test results wisely and gives you a chance to try hormone therapy. I sent you an email. Fingers crossed for you! 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 #179 - Feb 11^th, 2010 at 12:35pm Three weeks today since I started HRT. My Oxygen tanks are beginning to gather dust. I haven't even shot a shadow in over a week. I know this is early but my post Christmas cycle is usually getting started right about now. -Dennis- (cautiously optimistic)
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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #180 - Feb 11^th, 2010 at 5:46pm

DennisM1045 wrote on Feb 11^th, 2010 at 12:35pm:

Three weeks today since I started HRT.

My Oxygen tanks are beginning to gather dust. I haven't even shot a shadow in over a week. I

know this is early but my post Christmas cycle is usually getting started right about now.

-Dennis- (cautiously optimistic)

Sweeeet Dennis...continued good luck!

If you are like me you may be tempted to try a few known triggers just to see what happens (not recommended)...in my case when I "trigger" even tho I am not getting CH I can still induce a faint shadow... last summer during my traditional summer remission I tried and no shadow developed.... so I guess CH are always there when in regular cycle, just lying below the surface for me....but that is OK as the HRT is doing its job....for now:) I triggered last week and set off a mild shadow instantly ( definately in cycle).

My staff have been asking why this winter I am so "turned on" and ready to slay the marketplace with new sales campaigns...without CH I can now market all year round and last year's sales (while under HRT with no CH) were up over 25%....and all in a bad economy.
Maybe i'll be able to retire sooner than later:)

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 #181 - Feb 11^th, 2010 at 6:21pm I love the sound of progress!!! Jerry
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MinxKittten CH.com Junior Offline Supporter Posts: 57 Las Vegas, NV Gender:	Re: WHY don't we pay attention to this? Reply #182 - Feb 12^th, 2010 at 9:02pm Thank you for all of the great info. My husband has had CH for about 30 years. Right now is his worst cylce EVER. We have no insurance right now, and no money, but we're going to try to find a way to get him tested and try the HRT if he's low. Thank you very much!
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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 #183 - Feb 12^th, 2010 at 10:08pm Good luck! Be careful with hormone supplementation. Keep you CH arsenal handy.
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kas

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Re: WHY don't we pay attention to this?
Reply #184 - Feb 18^th, 2010 at 2:39pm

hello all, i have been reading about the low testosterone levels and i had my husband get tested, and lo and behold his levels are low. not sure how low yet he will go see his doctor in a day or two. he is right in the middle of a cluster cycle right now and nothing is helping with the pain! i started him on the kilowatt 3 supplements on Tuesday of this week and they haven't produced anything positive as of yet. he drinks red bull by the 12 pack. and takes the taurine capsules also. oxygen didn't seem to help him either. i have been searching high and low for something, anything that will give him some relief!!! it breaks my heart to see him like this!!! if anyone has any advise on the testosterone or some kind of pain relief we are open to advise!!! thank you all for your willingness to talk about this monster and your advise on coping!!! I'm just a loving wife searching for relief for my husband! when he is in a cycle he gets so down and out and feels like he will never find anything to help get the monster out of his head! thanks again for your help and support this site is a God send!!!!!

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Joni

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Re: WHY don't we pay attention to this?
Reply #185 - Feb 18^th, 2010 at 3:23pm

kas wrote on Feb 18^th, 2010 at 2:39pm:

hello all, i have been reading about the low testosterone levels and i had my husband get tested, and lo and behold his levels are low. not sure how low yet he will go see his doctor in a day or two. he is right in the middle of a cluster cycle right now and nothing is helping with the pain! i started him on the kilowatt 3 supplements on Tuesday of this week and they haven't produced anything positive as of yet. he drinks red bull by the 12 pack. and takes the taurine capsules also. oxygen didn't seem to help him either. i have been searching high and low for something, anything that will give him some relief!!! it breaks my heart to see him like this!!! if anyone has any advise on the testosterone or some kind of pain relief we are open to advise!!! thank you all for your willingness to talk about this monster and your advise on coping!!! I'm just a loving wife searching for relief for my husband! when he is in a cycle he gets so down and out and feels like he will never find anything to help get the monster out of his head! thanks again for your help and support this site is a God send!!!!!

You didn't mention if he takes medication to prevent and abort? It might be a better use of your time.

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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MinxKittten

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Re: WHY don't we pay attention to this?
Reply #186 - Feb 18^th, 2010 at 6:08pm

kas wrote on Feb 18^th, 2010 at 2:39pm:

hello all, i have been reading about the low testosterone levels and i had my husband get tested, and lo and behold his levels are low. not sure how low yet he will go see his doctor in a day or two. he is right in the middle of a cluster cycle right now and nothing is helping with the pain! i started him on the kilowatt 3 supplements on Tuesday of this week and they haven't produced anything positive as of yet. he drinks red bull by the 12 pack. and takes the taurine capsules also. oxygen didn't seem to help him either. i have been searching high and low for something, anything that will give him some relief!!! it breaks my heart to see him like this!!! if anyone has any advise on the testosterone or some kind of pain relief we are open to advise!!! thank you all for your willingness to talk about this monster and your advise on coping!!! I'm just a loving wife searching for relief for my husband! when he is in a cycle he gets so down and out and feels like he will never find anything to help get the monster out of his head! thanks again for your help and support this site is a God send!!!!!

Welcome!!
i can relate to your post, just a wife who feels so bad for what husband is going through and trying to find some relief. Per Joni's post below, the testosterone wasn't really found to prevent or abort, but just give some relief. less intense pain, less frequency, according to most of the studies.
from what i read, i don't believe low testosterone causes a cycle, but once in cycle, the hypothalmus is not properly functioning and that results in low testosertone. so the HRT, just seem to aleviate some of the severe symptoms.

he started on the androgel last saturday, the first 3 days he had immediate relief with pain and frequency almost cut in half, but the last 3 days, they are almost back to the unbearable level as before.
we're still hopful though that this will help.

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kas

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Re: WHY don't we pay attention to this?
Reply #187 - Feb 18^th, 2010 at 6:33pm

thank u both for ur reply! my husband takes hydracodone and oxycodone right now to try to abort. he has been on gabapentin, and one that made him violently sick(i cant remember the name of it right now), he has tried oxygen,nothings seems to work for him. he is very hard to medicate it takes way more for him than it does for most people so that adds to the frustration!!! and meds don't work on him for very long, his body builds a tolerance to everything! he has a wonderful doc, she is willing to try anything to see if it helps! I'm sure I'm forgetting things that he has tried! again thank you!!!

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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 #188 - Feb 18^th, 2010 at 6:43pm Narcotics will not help and will cause an additional problem!!!
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kas CH.com Newbie Offline Hubby's cluster=my heartache Posts: 10 new mexico Gender:	Re: WHY don't we pay attention to this? Reply #189 - Feb 18^th, 2010 at 7:40pm he only takes them at night!! what should he ask his doc for then! he has had clusters for 2 1/2 yrs now. we just dont know what he needs.
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MinxKittten

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Re: WHY don't we pay attention to this?
Reply #190 - Feb 18^th, 2010 at 8:42pm

any of those meds would only cause my husband to have more headaches.
there's a lot of different meds people take, i think none are 100% effective.

as a supporter, keep doing your research on here. print articles and studies, go with him to the doctor.

possible addiction to pain meds is not the way to go. its a painful condition but pain meds don't usually help the overall problem.

keep at it girl....you'll never cure it....but keep trying new stuff.

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Joni

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Re: WHY don't we pay attention to this?
Reply #191 - Feb 18^th, 2010 at 10:18pm

kas wrote on Feb 18^th, 2010 at 7:40pm:

he only takes them at night!! what should he ask his doc for then! he has had clusters for 2 1/2 yrs now. we just dont know what he needs.

Sounds like you need to do a lot of reading here. Start with the medical info on the left hand side. Then read other posts by newbies and you will see some answers there. Also, make a post in the newbie section describing his headaches...chronic or episodic, characteristics, and meds taken, etc. You will get more answers that way.

I take Verapamil as a preventative and Zyprexa as an abortive. I have never had a narcotic in my 25 years of headaches. Many here like oxygen, lithium, Imitrex...etc. Read, read, read!

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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MattyAA

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Re: WHY don't we pay attention to this?
Reply #192 - Feb 19^th, 2010 at 1:20am

Hey Kas, what Litres per minute oxygen is your husband using? What kind of mask is he using? Non-rebreathing type? Try asking him to deep breathe on oxygen as if tyring to hyperventilate, some people report only with higher flow and hyperventilating they acquire relief. Did he try Imitrex inject/nasal spray? Did he got prescribed Verapamil and/or Gabapentin/Neurotonin?

And like Joni said Zyprexa is a nice try to see if it aborts hits too.

But about topic, I think you could give the testosterone a go.

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kas

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Re: WHY don't we pay attention to this?
Reply #193 - Feb 19^th, 2010 at 9:50am

thanks again guys!! i have been reading lots of posts on here and i just get so confused, but u all have helped me so much! my husband will see his doc today and im gonna go with him and i have written down ya'lls suggestions. and im gonna get him to try the oxygen again too!!!! he has a wonderful doc that is willing to try anything to get him some relief, so he is blesssed there!! and im sure she will put him on an hrt since his levels r low and he has not been feeling well in other areas either and im sure that has to do with the low levels along with the clusters! i will keep u updated on what his doc puts him on! thanks all!!!

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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 #194 - Feb 19^th, 2010 at 3:38pm No problem Kas, one thing you need to stick to, try everything that is suggested here, until something works for your husband, and if something failed try with bigger dose if doc allows or try again.
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kas CH.com Newbie Offline Hubby's cluster=my heartache Posts: 10 new mexico Gender:	Re: WHY don't we pay attention to this? Reply #195 - Feb 19^th, 2010 at 5:25pm hello again, went to the doc with hubby this a.m. she put him on oxygen 15liters. propranolol 40mg. and androgel for the low testosterone. i will let ya'll know if it works.
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Callico

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Re: WHY don't we pay attention to this?
Reply #196 - Feb 19^th, 2010 at 6:36pm

Hi Kas,

I found the HRT to be very helpful. It didn't totally kill mine, but gave me about a 50% improvement. (very subjective I know. Hard to quantify)

He need s a good prevent to go with it. I've been using Kudzu for the last several years. Have found it to be more effective than the meds and with out the side effects I was experiencing with the Rx's.

The biggest thing about O2 usage is the method and the mask. I strongly suggest you get one of the O2ptimasks from the CH.com store. It costs a little more, but it was designed for clusterheads and has been a godsend for me. I bought two, and wouldn't go back to the old non-rebreather for anything! I would also suggest you consider buying a 25lpm regulator (or higher) and using it. I'm one who said oxygen didn't work for me and quit using it for several years. I had been on 15lpm with the old non-rebreather mask and had minimal results unless I got to it within a minute or two of the hit. Once it got beyond a K4 it wass to late to bother. Now with the new mask and 25lpm I can knock out most hits within 5-8 mins even whin they are in the high Kips. My next investment is probably going to be a demand valve.

Keep reading and asking questions. That is what we are here for.

Jerry

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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #197 - Feb 19^th, 2010 at 9:07pm

I' been away from home for a few days and just returned to see activity in this thread again.

My testosterone therapy (androgel) has resulted in only one CH in the last 14 months... may not seem like a long remission to some but to me this is a monumental positive change.

Throughout the whole time, I have continued to take 30mg of Amitriptyline at bedtime to induce sleep quickly beyond shallow REM sleep (where CH traditionally have hit me).

This combination has not cured anything, but has kept the clusters to the occassional very faint shadow that can be easily induced by my traditional triggers...but a full blown CH cannot be precipitated even if I try and force my known triggers.

HRT can be life changing for a lucky few....many have spoken to me about their excellent response to this treatment...HOWEVER...about almost as many others have had no change with HRT...in most cases those people have experienced some benefit from traditional drug therapies and /or Oxygen therapy.

The body of evidence that I have read/ heard and experienced personally, seems to indicate that those most likely to have a benefit using HRT are those where nothing else works at all (drugs, O2 etc) and whose testosterone levels are low during cycle.

For those with positive results, Some have reported complete remissions, some still had CH but with less frequency, and others only experienced substantially reduced pain levels, similar to some of the recent posts in this thread have indicated..

Results, if any, should start to be noticed within three weeks of the start of HRT...if nothing changes after 6 weeks, stop wasting your money.

Just my opinion as a person who is now in contact with quite a few people experiencing different levels of success with this approach.

So far, none that I have spoken with have found that the CH have found a way to come back with a vengance in the way they they often do with other drug therapies....perhaps that will eventually occur and If it does I will report those findings too... just as i did when I experienced a random CH in early November (which scared the hell out of me)...thank God, despite the fact I know I am in cycle, I have not had any other episodes since.

Good luck with this approach, it is not a silver bullit, but it has been documented to help a small population in the CH community.

Paul

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Paul
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MD from NC CH.com Newbie Offline I Love CH.com! Posts: 3	Re: WHY don't we pay attention to this? Reply #198 - Feb 24^th, 2010 at 8:56pm Could someone please inform me on how you are dividing up your 6mg imatrex shots into three separte doses? I really need to strech them out as I only receive limited supply from insurance....
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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 #199 - Feb 24^th, 2010 at 8:59pm There is a list of links to the left hand side of the screen. Click on the one labeled "imitrex tip". It's the 7th one down the list. -Dennis-
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