Click this link to read a post I like on the clusterheadaches.com message board...

May 5^th, 2024 at 12:19pm

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

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

(Moderators: Mrs Deej, DJ)

‹ Previous Topic | Next Topic ›

Pages: 1 ... 15 16 17 18 19

WHY don't we pay attention to this? (Read 133587 times)

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 #400 - Oct 28^th, 2011 at 4:03pm Good luck Paul. It sounds like you are in good hands. Thanks for the update. -Dennis-
Back to top	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. IP Logged

Donna.m.har

CH.com Newbie

Offline

I Love CH.com!

Posts: 13
Gainesville, Florida
Gender: female

Re: WHY don't we pay attention to this?
Reply #401 - Oct 31^st, 2011 at 8:16pm

Thank you, Paul, for the report. We are all hoping that this new start is successful and anxiously waiting for the next chapter.

Thank God that you were vigilant in being tested and that you had good docs working with you., You certainly went about this the right way, and in doing so, have taught us ALL a lesson.

In the meantime, let's hope that Angry

this ugly guy gives you a break.

Take care, and hope to hear from you again soon.

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 #402 - Nov 21^st, 2011 at 12:10pm

HRT is winning again!

From a month ago when I had my worst day in years with 6 distinctly different high Kip hits within a 24 hour period to now only faint shadows evey other day or so.

I will stay at this dose until the first week in January when the endo will review my blood levels, make sure the liver is doing its job and testosterone levels are stabil and not rising, and review my headache diary....

...if I can maintain this current level of headache control and not build up a toxicity I am golden

Fingers crossed.

Paul

Paul
"car crazy"

IP Logged

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 #403 - Nov 21^st, 2011 at 1:13pm Great news Paul! Long may it continue. Bobb
Back to top	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! IP Logged

DennisM1045

CH.com Alumnus

Offline

One wave at a time!

Posts: 3437
Haverhill, Massachusetts, USA
Gender: male

Re: WHY don't we pay attention to this?
Reply #404 - Nov 22^nd, 2011 at 12:54pm

Thanks for the update Paul. I've been checking back frequently wondering how you were making out. May your success continue!!!

Your recent experience has me thinking that maybe my levels are off again as I'm seeing a lot of break through hits in the last three weeks. They are becoming pretty regular, though thankfully not higher on the kip scale than a 5. Oxygen and energy drinks are working well to abort.

My Urologist didn't run my testosterone levels in September when I saw him. I have a physical scheduled with my primary in early December. I'll have her run my levels then. If necessary I'll circle back to my Urologist.

-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.

IP Logged

MattyAA

CH.com Veteran

Offline

I Love CH.com!

Posts: 242
Poland, EU
Gender: male

Re: WHY don't we pay attention to this?
Reply #405 - Nov 22^nd, 2011 at 6:52pm

Hey Paul,

Just read whole update for past year from you.

I must say I felt that pinch behind eye, when you mentioned after you stopped taking free T that headaches came back, but then slight relief, when you said you stopped having CHs only faint shadows, please update what is happening, how it looks like right now.

And wow this is such a huge data base of knowledge for medical professionals and all of us.

I mean, now we got another tool to try against CH, and to know what we should do when we get too much T.

You are a pioneer I think at this certain matter, of when someone intakes too much free T and struggles with CH.

Good luck Paul and I wish you good days with 0% thinking about CH and no shadows to remind you of this crap!

-Matty

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 #406 - Dec 3^rd, 2011 at 10:16pm

Thanks Matty

My Ch are fading away...not gone completely yet but getting close.

I need more bloodwork done in a couple weeks before the doc will add any more hormone...I'm right on the edge with my current dose...a drip or two more per day will kill the CH but i need to wait until the bloodwork gives the doc the ok.

Dennis, please give us an update on any new testing results or hormone adjustments you experience.

Question: What does a blood workup for testosterone levels cost in the USA?

All blood tests are free in Canada (couple of exceptions) so establishing levels and ongoing monitoring are a no brainer....

... i am sure if the cost is high for testing in the USA that there may be resistance to go the hormone route for CH sufferers that do not have adequate health insurance.

I'm feelin' great... and happy... bring on Christmas!

Paul

Paul
"car crazy"

IP Logged

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 #407 - Dec 4^th, 2011 at 4:54pm That's great news Paul! I hope you are able to stabilize and never have another hit. Thanks for the updates. jc
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 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 #408 - Dec 10^th, 2011 at 6:03am The cost of lab tests in the US is all about how good your insurance is. I'm lucky and mine covers 100%. So for me it's just a matter of getting in to have the tests ordered. Seeing my GP next Friday. I'll update this thread on results once I have them. -Dennis-
Back to top	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. 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 #409 - Dec 12^th, 2011 at 3:53pm

DennisM1045 wrote on Dec 10^th, 2011 at 6:03am:

The cost of lab tests in the US is all about how good your insurance is. I'm lucky and mine covers 100%. So for me it's just a matter of getting in to have the tests ordered. Seeing my GP next Friday. I'll update this thread on results once I have them.

-Dennis-

Pardon my ignorance Dennis, but do you have to personally buy medical insurance or do employers provide it as a benefit?

p

Paul
"car crazy"

IP Logged

Callico

CH.com Hall of Famer

Offline

Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
Gender: male

Re: WHY don't we pay attention to this?
Reply #410 - Dec 12^th, 2011 at 10:36pm

It depends on the employer. Many do, but with the escalation of health care and or insurance costs due to the Obama administrations policy many employers are having to discontinue providing the insurance. The last two years I worked my previous job insurance rates were raised 32% and 24% respectively. Those of us who are self employed and many others have to buy our own if we can afford it, or if we can find coverage that will accept us due to pre-existing conditions. (Either way, employer paid or self bought, the employee is essentially purchasing his own. It is just that the employer pays the bill rather than paying it in wages.)

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)

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 #411 - Dec 19^th, 2011 at 1:19am Thanks for the info Jerry.
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 #412 - Jan 17^th, 2012 at 12:53pm

I have been ch free once again over the past few weeks as my levels of testosterone found equilibrium in the medium to med-high normal range... perfect zone that works for me.

Ongoing monitorring will occur with the endo to make sure I do not develop another toxicity issue, and i will ramp down my doseage when out of cycle.

Happy!

Paul

Paul
"car crazy"

IP Logged

CC_stole_my_Harte

CH.com Junior

Offline

Life's a garden, DIG IT?!

Posts: 53
Tyler, Texas
Gender: female

Re: WHY don't we pay attention to this?
Reply #413 - Jan 17^th, 2012 at 7:30pm

I haven't been on the board since 2007, but all this about testosterone has gotten my attention. My husband, Chris doesn't get a whole lot of sleep thanks to his career as a personal trainer. He also is involved with really high intensity CrossFit workouts. We realized that his sleep schedule was hurting his testosterone level and raising his cortizol. We saw the evidence in his Xfit performance and was verified by a urologist that he is, in fact, low. Strange thing is though that he's been in the first remission in his life for 3.5 years now (since the start of his new career). During the summer, he started taking bi-weekly and then weekly testosterone shots as administered by the urologist. If all this related to him you'd think he wouldn't have started having HA's again (since this Saturday) since his testosterone is now higher than ever...? Undecided

IP Logged

Callico

CH.com Hall of Famer

Offline

Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
Gender: male

Re: WHY don't we pay attention to this?
Reply #414 - Jan 17^th, 2012 at 10:25pm

Great news Paul! For me, like other treatments, it started out really well, but I missed a few doses while on extended travel and when I started back up nothing happened. Angry

I may give it another try later on, but I'm getting ready to try Batch's regimen. I have that history though of something working for a while and then quitting. Ought to be used to it by now.

That does not diminish at all my excitement for you though! I always get excited when another clusterhead gets relief.

Jerry

IP Logged

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 #415 - Jan 17^th, 2012 at 10:28pm CC' I'm wondering if your husband's relief came as a result of his heavy exercise schedule and lack of sleep. I know if I get extra sleep or relax even a little bit I'm looking for a hard hit. I think it is Bob P that has as his signature line to never sleep. Works for me at least to a degree. 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

Purple (head404) CH.com Junior Offline clusterbusters.com Posts: 55	Re: WHY don't we pay attention to this? Reply #416 - Jan 18^th, 2012 at 3:24am Wow...!! This is amazing news!! I registered on this site a couple days ago... I've been reading good parts of this thread. I'm taking an appointment tomorrow to have my hormonal count done asap
Back to top	« Last Edit: Jan 21^st, 2012 at 5:12pm by Purple (head404) » IP Logged

Lookn4answers

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Re: WHY don't we pay attention to this?
Reply #417 - Feb 4^th, 2012 at 8:03pm

I just scanned through this thread and found it fascinating. I have been on Testosterone therapy for a number of years, though not because of the CHs. Here's what's interesting. My CH cycle has started immediately after forgetting a T dose, multiple times right after starting a new tube of T cream (ie, strengths must vary from tube to tube), or changing form/type (shots vs creme vs patch). So testostone definitely plays a role. Unfortunately, my T therapy has not proven to either abort a cycle or prevent a cycle - only lack of T therapy has started a cycle. Maybe I need to work with my Dr. to up my dosage...

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 #418 - Mar 7^th, 2012 at 12:15pm

Been away on vacation for 7 weeks...had a great time and only the occassional shadows...T therapy is holding its own once again for me:)

I received word from a doctor (friend of my biz partner) who now has three CH patients undergoing T treatment and 2 are in remission (in their traditional cluster period)and one has not responded.. seems like every other treatment out there where it helps some and not all.... and doesn't always work over the long term.

Paul

Paul
"car crazy"

IP Logged

Purple (head404)

CH.com Junior

Offline

clusterbusters.com

Posts: 55

Re: WHY don't we pay attention to this?
Reply #419 - Mar 7^th, 2012 at 3:51pm

I just got my tests results. My neuro said my testosterone level is normal. It stands at 13.3, and she says normal level is between 6 and 25. This was tested after my 1st bust (RC seeds), so still in cycle (it took me 3 busts to get PF). She said the free testo wasn't tested since my testo was normal o.0. Oestrogen levels she said was normal also, but I didn't pick up the data.
What does 13.3 testosterone level say to yas? Does that sound normal? I'm male 50 years old.

OK, adding this now:
I think I succeeded in translating my figures to the ones posted earlier on this thread by others... my 13.3 would be NMOL by liter, translating into 380 NG by deciliter, or 380 NG by 100 milliliters. Since I just turned 50, and that I was actually 49 at the time of the test, it sounds to me I'm on the very low side for a man younger than 50. If we consider I'm elderly LOL, over 50, 380 is right in the middle of what it should be, but I really don't feel (nor look at all) like a 50 years old.

And when I asked my neuro 13,3 what... ml? parts per millions??, she didn't even know, and she seemed to be referring exclusively to the lab test report to check if that level was good or not. For 50 years old I asked? Uhhhh, yes she said (not finding the answer on her paper).

This tells me that testosterone levels are really not her branch.
I'd appreciate anyone's comments

[/font]

« Last Edit: Mar 7^th, 2012 at 8:26pm by Purple (head404) »

IP Logged

Purple (head404) CH.com Junior Offline clusterbusters.com Posts: 55	Re: WHY don't we pay attention to this? Reply #420 - Mar 12^th, 2012 at 10:16am I was hoping for a comment... Is this thread too old, or no one has anything to comment? I think my testo test shows I'm on the low side and I would like to challenge my neuro on that, but I would appreciate a comment of anyone about it first.
Back to top	IP Logged

DennisM1045

CH.com Alumnus

Offline

One wave at a time!

Posts: 3437
Haverhill, Massachusetts, USA
Gender: male

Re: WHY don't we pay attention to this?
Reply #421 - Mar 19^th, 2012 at 1:56pm

Hey Purple. It sounds to me like your levels are normal. I was 116 when initially tested. I'm now at 280 and largely PF with just occasional shadows and breakthroughs. The only time I get real attacks now is if I get lazy with the applications.

So I think your Dr is right and, from what I understand, you would not be a good candidate for T-therapy.

Good luck...

-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.

IP Logged

Purple (head404)

CH.com Junior

Offline

clusterbusters.com

Posts: 55

Re: WHY don't we pay attention to this?
Reply #422 - Mar 19^th, 2012 at 3:25pm

thank you very much for answering, Dennis. I wasn't considering the TRT anyhow, but I just wanted to know if I was low or high. Well I still think I'm low, I just turned 50... but anyhow, thanks

I found clusterbusters since seeing this thread. After lots of reading and thinking, I figure busting is closer to the source of the problem than testosterone, D3 or other lacking chemicals, that I see more like collateral symptoms of a defective (or maybe rather different) hypothalamus. I'm thinking a lot and gathering data and my goal is to try to find the root of the problem. CH is part of me and will always be. I'm glad though some find relief from a TRT.
thanks again for answering

IP Logged

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 #423 - Mar 19^th, 2012 at 8:35pm No problem. As much as we all have in common we all still need to follow our own path. I wish you luck in your search for YOUR magic bullet. -Dennis-
Back to top	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. 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 #424 - Apr 15^th, 2012 at 7:51pm i'm now remission for the summer and I have now gone off the testosterone until needed when the beast returns next time. paul
Back to top	Paul "car crazy" IP Logged

Pages: 1 ... 15 16 17 18 19

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

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!