Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 2 3 4 5 ... 19
Send Topic Print
WHY don't we pay attention to this? (Read 133331 times)
Pixie-elf
CH.com Hall of Famer
*****
Offline


I've tried the rest, and
busting is the best!


Posts: 517
Beaumont,Tx
Gender: female
Re: WHY don't we pay attention to this?
Reply #50 - Dec 22nd, 2008 at 10:22pm
 
This isn't in the same exact class of things but since you're talking about hormones... how many women with clusters have gynocological problems?
Back to top
« Last Edit: Dec 22nd, 2008 at 10:22pm by Pixie-elf »  

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.
 
IP Logged
 
DonnaH_again
Ex Member



Re: WHY don't we pay attention to this?
Reply #51 - Dec 22nd, 2008 at 11:38pm
 
Webgopher (what is your first name?)

Since you "have finished with the change of life", are you on hormone replacement therapy?  
Back to top
« Last Edit: Dec 22nd, 2008 at 11:40pm by N/A »  
 
IP Logged
 
webgopher
CH.com Junior
**
Offline


I may get older, but I
refuse to grow up.


Posts: 43
x0|Lafayette|USA||0|0|IN,Indiana
Gender: female
Re: WHY don't we pay attention to this?
Reply #52 - Dec 24th, 2008 at 11:53am
 
Hi, not on any HRT. There is a history of cancers on my mother's side of the family and I don't want to take risks with that bag of worms. I only had one or two hot flashes during the whole change time - I had a couple of basal cell tumors removed and am thinking I might also be predisposed to cancer. Other than having NO sex drive (thankfully the hubby does, too), I'd say I'm holding up pretty well. No CH yet and is almost noon - maybe a pain-free day today.
Back to top
  
 
IP Logged
 
Ray
CH.com Alumnus
***
Offline


Ray


Posts: 1996
Columbus, Ohio
Gender: male
Re: WHY don't we pay attention to this?
Reply #53 - Dec 24th, 2008 at 6:53pm
 
Back to the base note looking at the correlation of low testosterone with CH:  my testosterone tested in the normal range and I'm still in high cycle.  Then again, normal is a "cuss" word in my family... Cheesy

Ray
Back to top
  

You have my prayers and compassion-I'm right there with you.

Dum tempus habemus, operemur bonum

*While we have the time, let us do good*

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
WWW raymond.schwartz759 rayplace raymond.schwartz759 raymond759  
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #54 - Dec 26th, 2008 at 10:31pm
 
MY WEEK #2 HRT REPORT


No noticeable new hair growing where it shouldn't
Muscles have not bulked up noticeably
Have not worn out my wife any more than usual

Have noticeably decreased pain levels of CH
Have noticeably decreased pain level of 24/7 chronic cluster period migraine
Have had 4-24 hour CH free periods since beginning HRT (3 this week)
Increased doseage of Amitryptilene has solved sleep issues associated with testosterone therapy

I have decreased from 200 mg (pre hormone) to 125 mg (current)Topamax and will continue to taper off in an experiment to eliminate Topamax as a variable in headache condition improvement

I am still very much in cycle with almost no underlying Migraine ( normal for me but most days is now un noticed unless i stop and think about it)

CH hits are low grade pain of KIP 3/4 but i have missed 3 days in the last 7

Yesterday (Christmas) was the most painfree Christmas in 25 years although i did have a 5/6 late in the day which hit immediately when i inhaled some new Ferrari cologne (I never use cologne in cycle). The CH lasted 1 h 15min and then felt achy for an hour afterwards.  Proof positive that i am still in cycle.

Today, nothing..... nadda.......
fantastic!!!!!!


WHY DON'T WE PAY ATTENTION TO THIS!


Till next week
Paul
Back to top
  

Paul
"car crazy"
 
IP Logged
 
Rolomatic
Ex Member



Re: WHY don't we pay attention to this?
Reply #55 - Dec 26th, 2008 at 11:17pm
 
Thats great to hear Paul, I will be following this thread. I am making an apointment this comming week for the GP. My nero had no creedance in this train of thaught so I will have to figure out what to say to the GP to get the test done.

I would write more but the friend is showing up so I'm off to the O2 @ 25 LPM.

Roland.
Back to top
« Last Edit: Dec 26th, 2008 at 11:19pm by N/A »  
 
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #56 - Dec 26th, 2008 at 11:52pm
 
Quote:
Thats great to hear Paul, I will be following this thread. I am making an apointment this comming week for the GP. My nero had no creedance in this train of thaught so I will have to figure out what to say to the GP to get the test done.

I would write more but the friend is showing up so I'm off to the O2 @ 25 LPM.

Roland.



I had a blood test done the day i told the GP about it and he was all over it (he is really into the cluster challenge and has felt rather defeated in all his previous efforts).

"the friend is showing up" - are you some sort of freak!  I have used lots of words to describe the visitor, but I will die before describing him as a friend!

Remember....O2 is your friend!

Hope you are feeling better soon. 
Paul
Back to top
  

Paul
"car crazy"
 
IP Logged
 
Rolomatic
Ex Member



Re: WHY don't we pay attention to this?
Reply #57 - Dec 27th, 2008 at 12:05am
 
MITYRARE wrote on Dec 26th, 2008 at 11:52pm:
"the friend is showing up" - are you some sort of freak!  I have used lots of words to describe the visitor, but I will die before describing him as a friend!

Remember....O2 is your friend!

Paul


Part of the reason I say “my friend is coming” is because I have accepted the burden, I can not change it. I will not let him defeat me, for I am stronger than he is. I never worry about how bad it will be, I just think about how nice it would be if he left my home. He has let me know that he will say his part and I don’t waste the energy to evict him, so I accepted his presence.

PFW’s to all,

Roland. Wink
Back to top
  
 
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #58 - Dec 27th, 2008 at 12:34am
 
Quote:
Part of the reason I say “my friend is coming” is because I have accepted the burden, I can not change it. I will not let him defeat me, for I am stronger than he is. I never worry about how bad it will be, I just think about how nice it would be if he left my home. He has let me know that he will say his part and I don’t waste the energy to evict him, so I accepted his presence.

PFW’s to all,

Roland. Wink


If that works for you!

I'm not as at peace with him as you,  and as much as CH are part of me i still enjoy a good fight, and i am always willing to waste the energy in wrestling with the CH and kicking his ass all the way out the door. .....now with extra testosterone I should be able to kick him clear out of the country  haha



Back to top
« Last Edit: Dec 27th, 2008 at 12:36am by MITYRARE »  

Paul
"car crazy"
 
IP Logged
 
Rolomatic
Ex Member



Re: WHY don't we pay attention to this?
Reply #59 - Dec 27th, 2008 at 12:43am
 
I find the fight to be a waste of energy, you can't stop him. Fighting the pain only makes it worse for me. So I bide my time, and he leaves quicker because he can see that he can't get to me. This helps allot in relaxing during O2 therapy…and allows you to better concentrate on your breathing technique, so the O2 works that much faster…

Rolo… Wink
Back to top
« Last Edit: Dec 27th, 2008 at 12:45am by N/A »  
 
IP Logged
 
Pixie-elf
CH.com Hall of Famer
*****
Offline


I've tried the rest, and
busting is the best!


Posts: 517
Beaumont,Tx
Gender: female
Re: WHY don't we pay attention to this?
Reply #60 - Dec 27th, 2008 at 1:22am
 
Quote:
I find the fight to be a waste of energy, you can't stop him. Fighting the pain only makes it worse for me. So I bide my time, and he leaves quicker because he can see that he can't get to me. This helps allot in relaxing during O2 therapy…and allows you to better concentrate on your breathing technique, so the O2 works that much faster…

Rolo… Wink


That's exactly my position on it. I don't call it my friend, but fighting it takes too much out of me. I also just end up feeling worse, because I COULDN'T win against the beast in the end... Like I didn't fight him hard enough.

Fighting it leads to my body being more sore afterwards, and it just wears me out. So, I say "Alright. You're going to do this to me, but I don't have to make it worse on me."
Back to top
  

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.
 
IP Logged
 
Rolomatic
Ex Member



Re: WHY don't we pay attention to this?
Reply #61 - Dec 27th, 2008 at 1:34am
 
You guys are pretty dense if you don’t get the "friend thing"… Like a woman has her "friend every" month!?!

Rolo. Cheesy Lips Sealed
Back to top
« Last Edit: Dec 27th, 2008 at 1:39am by N/A »  
 
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #62 - Dec 27th, 2008 at 2:23am
 
"pretty dense" is exactly how my wife describes me...haha

I think of friend in terms of the hymn " what a friend we have in Jesus" and to me Jesus is LOVE and CH is NOT love.....so that is where my "dense" little mind is coming from.

Anyhow... its twenty past two in the morning and this testosterone buzz is still got me wide awake, so its time for some amitript and sleep....goodnite folks..talk to ya soon
Back to top
  

Paul
"car crazy"
 
IP Logged
 
DonnaH_again
Ex Member



Re: WHY don't we pay attention to this?
Reply #63 - Dec 27th, 2008 at 8:23am
 
Paul, I can't tell you how happy I am for you!! 

All others, refer your doctors to this thread if they're really interested in cluster headache research.  Otherwise, print out and take info with you.

I keep re-reading this thread and getting more out of it.
Back to top
  
 
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #64 - Dec 29th, 2008 at 11:31pm
 
VERY HAPPY MID-WEEK REPORT!

Last friday - 1 weak CH
Saturday  - no CH
Sunday - no CH
Today - no CH (weak shadow only)

Is my cycle ending two  months too soon? or is the testosterone therapy doing something?....I don't care...I FEEL GREAT!!!!!


Why don't we pay attention to this?
Back to top
  

Paul
"car crazy"
 
IP Logged
 
UnderTheRadar
CH.com Old Timer
****
Offline


Literally


Posts: 383
Texas
Gender: female
Re: WHY don't we pay attention to this?
Reply #65 - Dec 30th, 2008 at 5:37pm
 
Yay!!  I'm so happy for you!!!
Back to top
  

Remember- double-line the foil, shiny side out.
 
IP Logged
 
DonnaH_again
Ex Member



Re: WHY don't we pay attention to this?
Reply #66 - Dec 30th, 2008 at 7:23pm
 
So am I.

Holding my breath..........

Donna   Cool            
Back to top
  
 
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #67 - Dec 30th, 2008 at 9:22pm
 
Add another pain free day today!

If i am entering remission, it would be 9 weeks sooner than any other cycle in the past twenty two years...the only different variable being that i began Hormone Replacement Therapy on December 12.

I had noticably reduced pain levels on Dec 15 and was amazed enough by Dec 17 to start reducing preventive meds to eliminate that variable from the equation, and see if improvement would continue...and it most definately has.

Why don't we pay attention to this?


I SURE WILL FROM NOW ON!!!
Back to top
  

Paul
"car crazy"
 
IP Logged
 
echo
CH.com Alumnus
***
Offline


Chronic and still alive
--- I Win!


Posts: 4544
Overland Park, KS
Gender: male
Re: WHY don't we pay attention to this?
Reply #68 - Jan 2nd, 2009 at 11:25am
 
Had the test done for Testosterone levels about 3 weeks ago.  Found out I was basically growing a vagina.

For a man my age one on the levels should be between 241 and 827. I was at 201. For the other level of free testosterone it should be between 7.2 and 24.  I was at 6.3.

I've been taking the lowest dose of Androgel for about 3 weeks and had another test done on Wednesday.  Should know something next week.

One the CH side -------  WOW!!!!!!.  Lighter hits, shorter hits, and getting farther apart each day.  And I'm actually sleeping!!!
Even slept through a thunderstorm the other night.  Didn't hear it, and ole fuck stick didn't wake me up as he has done for 30 years.

There just may be something to this.----
Back to top
  

"If you love something, let it go.  If it doesn't come back,  hunt it down and kill it". Proud father of a US Marine,  Marine turned COP, Navy Corpsman, and KS Army National Guard. Our  4 sons serve.
 
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #69 - Jan 2nd, 2009 at 11:35am
 
echo wrote on Jan 2nd, 2009 at 11:25am:
Had the test done for Testosterone levels about 3 weeks ago.  Found out I was basically growing a vagina.

For a man my age one on the levels should be between 241 and 827. I was at 201. For the other level of free testosterone it should be between 7.2 and 24.  I was at 6.3.

I've been taking the lowest dose of Androgel for about 3 weeks and had another test done on Wednesday.  Should know something next week.

One the CH side -------  WOW!!!!!!.  Lighter hits, shorter hits, and getting farther apart each day.  And I'm actually sleeping!!!
Even slept through a thunderstorm the other night.  Didn't hear it, and ole fuck stick didn't wake me up as he has done for 30 years.

There just may be something to this.----



Thank you for the report Echo...i hope more look into this and perhaps we will hear this message "echo" throughout this thread.

It will be interesting to see if your test results warrant an increased dose that may kick the Ch right out the door...I am so hoping for the best for you!

Thanks for posting.

Paul
Back to top
  

Paul
"car crazy"
 
IP Logged
 
midwestbeth
CH.com Sponsor
***
Offline




Posts: 1123
Edwardsville, IL
Gender: female
Re: WHY don't we pay attention to this?
Reply #70 - Jan 2nd, 2009 at 9:22pm
 
This is very interesting.  I always thought my thyroid, wacky hormones, and ch were somehow related.  In hindsight, it's too much of a coincidence since it seemed to begin all at once.  Something to definately talk to the Dr. about.

Thanks for your persistence Donna.

Beth
Back to top
  

Dum vita est spes est
midwestbeth midwestbeth http://www.facebook.com/profile.php?ref=profile&id  
IP Logged
 
DonnaH_again
Ex Member



Re: WHY don't we pay attention to this?
Reply #71 - Jan 2nd, 2009 at 9:51pm
 
If it helps just one person, I'll be happy.....but I'm praying that it will help at least the 5 out of 7 that one of the research groups had the good fortune of producing.

I certainly give Paul a lot of credit for his reporting and encouraging of others.  Keep it up Paul!!  I'm right behind you backing you up.

Should we direct the "General Posts" population over here?  Otherwise, they might miss this important trial going on right here on ch.com.

Cool
Back to top
  
 
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #72 - Jan 2nd, 2009 at 11:51pm
 
Quote:
Should we direct the "General Posts" population over here?  Otherwise, they might miss this important trial going on right here on ch.com.

Cool



Done


Paul
Back to top
  

Paul
"car crazy"
 
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #73 - Jan 2nd, 2009 at 11:57pm
 
MY WEEK #3 HRT REPORT

CH free all week

I am still taking 40 mg amitrip. for sleep to compensate for the testosterone side effect of never feeling tired at all.
Topamax now tapered to 75mg per day...continuing to taper off.

I have the worst head cold i have had in years but still feel great about starting a new year headache free (first time in 24 years)

WHY DON'T WE PAY ATTENTION TO THIS!


Paul
Back to top
  

Paul
"car crazy"
 
IP Logged
 
MITYRARE
CH.com Old Timer
****
Offline


autocross racer


Posts: 361
Ontario, Canada
Gender: male
Re: WHY don't we pay attention to this?
Reply #74 - Jan 3rd, 2009 at 3:28pm
 
The Mayo Clinic says;

"Studies also indicate that people have abnormal levels of certain hormones, including melatonin and testosterone, during cluster periods. These hormonal changes are believed to be due to a problem with the hypothalamus. Other studies show activity in the hypothalamus during cluster attacks. But it remains unknown what causes these abnormalities in the first place."

Here is a link to the whole write up on CH from the mayo Clinic;

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

Paul
"car crazy"
 
IP Logged
 
Pages: 1 2 3 4 5 ... 19
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!