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

MD from NC CH.com Newbie Offline I Love CH.com! Posts: 3	Re: WHY don't we pay attention to this? Reply #200 - Feb 24^th, 2010 at 9:31pm Thanks Dennis
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 #201 - Mar 16^th, 2010 at 1:12am

Bump

Bad economy resulted in losses in most companies in my industry yet my business sales went up 35% and profits up 40%...

I attribute this entirely to not having to deal with CH... I am finally able to run my business year round (if I so choose) and not be off for months due to CH...

I am still on cloud nine over this therapy...wish it worked for everyone... and I selfishly hope it keeps working well for me

Paul

Back to top

Paul
"car crazy"

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 #202 - Mar 18^th, 2010 at 7:47am

This is a post of rambling....thoughts I've entertained since last talking with you guys.

I've been watching the progress of this thread and wish to applaud those of you who have partaken in this venture. I guess venture is the right word because this has certainly been "a course of action that involves risk and uncertainty".

Jerry, Dennis, Paul......thanks for keeping this alive and for your frank and honest answers. I really believe that this will eventually become a large study and research project, and it is you guys who have created a great deal of interest in it. I couldn't believe it when I saw the number of "views" to this thread.

Paul, your dairy is a great tool. Don't lose it because it might be valuable to the medical professionals. Is your own doctor still impressed? Someone should put a bug in Goadsby's ear.

My son started his therapy last summer and is having sweet success with it!! Last 2 cycles were "no shows". Boy, was he surprised when his first test results came in. He was 2 numbers from the bottom..big 6 ft. tall, muscular man. Isn't it a shame that the word "testosterone" has such a negative effect on people?

Anyway.....just wanted to stop by and say Hello and keep up the good work. There's such a long way to go yet. Just keep rowing. Maybe start a forum on this very subject. Get the word out........create interest.

Thanks for being here for others....you're great!

If I can help in any way, e-mail me.

Hugs,
Donna Har

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 #203 - Mar 20^th, 2010 at 9:24pm

Nice to see you post again Donna,

I know of 11 others that are currently using Testosterone with various degrees of success...from fewer hits, reduced pain, and 4 which have had instant extended remission as soon as they started the HRT...and of course my wonderful experience too!

Glad to hear your son is doing well also.

What we really need is a new CH researcher to take a fresh look...no disrespect to the current researchers and their current lines of research, but there are not enough CH researchers period, to keep up with scientific approach testing new and emerging treatment options such as HRT, psychedlics, occipital treatments etc.

...all of these have treatments have merit worth proving and improving for better treatment options.

The CH phenomenon is as varied as the people who have them and multi discipline research by as many reseachers as possible will provide the most relief to the largest population of sufferers in the shortest timeframe.

How does a researcher get intersted in this type of CH work and what is in it for them?

Paul

Back to top

Paul
"car crazy"

IP Logged

Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: WHY don't we pay attention to this? Reply #204 - Mar 20^th, 2010 at 10:10pm Your optimism is appreciated, however it is probably naive. Research = $$$$$$ = Most affected/Fatal/Contagious, etc., and CH doesn't fit that bill.
Back to top	Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis 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 #205 - Apr 10^th, 2010 at 10:12pm

Donna.m.har wrote on Mar 18^th, 2010 at 7:47am:

Is your own doctor still impressed?

Sorry I forgot to answer this question Donna. My doc is absolutely impressed.

My business partner's best friend is a doctor and he contacted me to find out about this whole hormone deal. He has now prescribed to three ch patients and two are doing fabulous and one has improved but not in total remission. He is also very impressed and is passing the word in the medical community here in Ontario.

P

Back to top

Paul
"car crazy"

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 #206 - Apr 22^nd, 2010 at 3:09pm

"How does a researcher get interested in this type of CH work and what is in it for them?

Paul"

I don't have a clue, but let's think about who would benefit most by such an accomplishment as to prove the relationship between CH, hormone distribution, the hypothalamus and whatever else might be involved. I would think that it would have to be someone not solely interested in the $, but also in the plight of the sufferer. I am thinking an "educator". Perhaps a neurology professor teaching in a hospital based university.

I know a young woman (who was an RN for Hospice until an unfortunate injury was inflicted upon her 2 years ago), who was such a great patient advocate that she is now thinking about going for her Master's degree so that she can teach a specific attitude/treatment she would use if she was able to be a nurse again. Personal experience really motivates. Mistreatment puts courage in the voice and spirit.

Know any journalists?

We must keep thinking...daring to be vocal....touching people. I wish I knew the answer. Brochures and fliers don't work...even in doctor's offices. We've tried that.

We've tried several things, but just haven't hit the right button yet.

Any ideas out there?

I have a 13 year old grandson who is suffering from severe, disabling "migraine" headaches right now. His father is my son who also started with "migraines" at age 12, which morphed into episodic clusters when he turned 17. I guess I have a very selfish reason for pushing this, guys and gals.

Having lived with clusterheadaches for 28 years myself, I can speak first hand as well.

Here's something curious I've just read........offspring with cluster headaches whose mothers were low in testosterone during pregnancy tend to have index fingers that are as long or longer than their ring fingers. (Not necessarily the mothers tho) They also use the artistic hemisphere of their brains more than those without CH, and are good in math.. This is true in my children....coincidence?

Pop quiz time.....LOL.

PFDN all.

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 #207 - Apr 27^th, 2010 at 9:38pm

Donna.m.har wrote on Apr 22^nd, 2010 at 3:09pm:

"How does a researcher get interested in this type of CH work and what is in it for them?

Paul"

I don't have a clue, but let's think about who would benefit most by such an accomplishment as to prove the relationship between CH, hormone distribution, the hypothalamus and whatever else might be involved. I would think that it would have to be someone not solely interested in the $, but also in the plight of the sufferer. I am thinking an "educator". Perhaps a neurology professor teaching in a hospital based university.

I know a young woman (who was an RN for Hospice until an unfortunate injury was inflicted upon her 2 years ago), who was such a great patient advocate that she is now thinking about going for her Master's degree so that she can teach a specific attitude/treatment she would use if she was able to be a nurse again. Personal experience really motivates. Mistreatment puts courage in the voice and spirit.

Know any journalists?

We must keep thinking...daring to be vocal....touching people. I wish I knew the answer. Brochures and fliers don't work...even in doctor's offices. We've tried that.

We've tried several things, but just haven't hit the right button yet.

Any ideas out there?

I have a 13 year old grandson who is suffering from severe, disabling "migraine" headaches right now. His father is my son who also started with "migraines" at age 12, which morphed into episodic clusters when he turned 17. I guess I have a very selfish reason for pushing this, guys and gals.

Having lived with clusterheadaches for 28 years myself, I can speak first hand as well.

Here's something curious I've just read........offspring with cluster headaches whose mothers were low in testosterone during pregnancy tend to have index fingers that are as long or longer than their ring fingers. (Not necessarily the mothers tho) They also use the artistic hemisphere of their brains more than those without CH, and are good in math.. This is true in my children....coincidence?

Pop quiz time.....LOL.

PFDN all.

Donna, great ideas.....

but, I was thinking of a different approach

....the hormone manufacturers certainly have an intestest in any application sales) of their product....the key to studies may be in their ability to grow their market a wee bit on a product already developed and marketed...

what would it cost for them to send out a memorandum to doctors indicating this probable headache/hormone relationship? and asking the medical community to undertake some trials and research?

P

Back to top

Paul
"car crazy"

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 #208 - Apr 28^th, 2010 at 2:22pm

That is a very good idea, Paul, and sounds like a workable idea.

Someone very knowledgeable (like your own doctor who has been working with you on this) might want to contact such a source and explain the success that you, and a few others that you know, have had.

If he isn't interested, I'm not too shy to do some inquiring. Making a few phone calls...writing a few letters.

If they were to become interested and informed, they would probably send out sales reps. to doctors offices, etc. This is one of the things that drug companies do...direct sales to the docs.

When I worked in doctors offices, we had rep's bringing in samples and literature, as well as great lunches, all of the time. They spend lunch time with the doctors and employees as a time for education about a new or improved product.

Is there still a chat room here? Or on the OUCH site? It would be interesting to get a group together and toss ideas around.

Now that we have a some results, and a few people paying attention to this, let's not let it go by the wayside.

Any ideas on how to approach this or any other methods?

Back to top

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 #209 - May 12^th, 2010 at 10:12pm Time for an update. It's been 4 months now and I'm still pain free. Could it be the HRT? Maybe. That's the only real change I've made. Spring cycle - skipped!!! Not even a shadow in months now. 1st time in years the beast has lost my address. -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 #210 - May 18^th, 2010 at 11:58pm

DennisM1045 wrote on May 12^th, 2010 at 10:12pm:

Time for an update. It's been 4 months now and I'm still pain free. Could it be the HRT? Maybe. That's the only real change I've made.

Spring cycle - skipped!!! Not even a shadow in months now.

1st time in years the beast has lost my address.

Smiley

-Dennis-

I am so happy for you Dennis.

Regardless of the source of your skipped cycle, you must be so happy to have the break from the "routine" we are all acustomed to.

You already know what I think about HRT.

Best wishes for a long term and well deserved remission. (as if any of us did not deserve a remission)...anyhow...enjoy life!!!!!!!!!!!!

Cheers
Paul

Back to top

Paul
"car crazy"

IP Logged

Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: WHY don't we pay attention to this? Reply #211 - May 19^th, 2010 at 12:17am When I started the preventive meds I am on now, I went 3 years without headaches. It is a wonderful feeling, isn't it?!!! Oh, how I wish it had lasted, but I sure enjoyed the break!!! It makes me hopeful to have another one some day. Good luck.
Back to top	Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis IP Logged

Donna.m.har CH.com Newbie Offline I Love CH.com! Posts: 13 Gainesville, Florida Gender:	Re: WHY don't we pay attention to this? Reply #212 - May 19^th, 2010 at 11:46am Whatever the reason, that's really great news, Dennis. Sure hope it lasts!!
Back to top	IP Logged

davidj35 CH.com Veteran Offline 02 is my best friend Posts: 151 x0\|LaGrange\|USA\|\|0\|0\|NY,New_York Gender:	Re: WHY don't we pay attention to this? Reply #213 - May 24^th, 2010 at 12:57pm I am trying RC seeds right now but once I get my insurance back sometime in June I will DEFINTLEY get my hormone balance checked. I just read through all 9 pages of this post and thanks to all who have been trying this. David
Back to top	IP Logged

Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: WHY don't we pay attention to this? Reply #214 - May 26^th, 2010 at 10:02pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Try these guys. They might have something for you. Potter
Back to top	IP Logged

Openminder

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Re: WHY don't we pay attention to this?
Reply #215 - May 29^th, 2010 at 5:09pm

This is very interesting and new to me. I was misdiagnosed for 39 yrs. and just found out about 3 weeks ago what this was. During the month before this last cycle began with actual attacks, my sexual desire dropped dramatically (no sex for a month) as well as during the cycle. outside of the cycle, there has never been a problem. infact it was more of the opposite. - I am responding fairly well to self treatment 9mg of melatonin every nite at 10pm

Back to top

IP Logged

1961mom

CH.com Junior

Offline

I Love CH.com!

Posts: 39
Eugene, Or
Gender: female

Re: WHY don't we pay attention to this?
Reply #216 - May 31^st, 2010 at 4:07am

davidj35 wrote on May 24^th, 2010 at 12:57pm:

I am trying RC seeds right now but once I get my insurance back sometime in June I will DEFINTLEY get my hormone balance checked. I just read through all 9 pages of this post and thanks to all who have been trying this.

David

So did I! I couldn't put this post down...even after taking my 8mg of melatonin. I've enjoyed reading this 2 year, 9 page post. Somehow I'd missed all the research regarding hormones. May have been due to the fact that I am female and subconsciously thought "this couldn't apply to me, I'm not supposed to have testosterone" and blew off this whole area. Many friends have suggested menopause may have been the trigger and as I read this I thought "man could I have been delaying a possible treatment just because of the way research papers structure their opening statement towards males?"

I think I'll take my laptop to my next gynecologist appointment!

Back to top

Thanking the Airline Industry for my borrowed quote
"Put your Oxygen mask on first, then assist others"

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 #217 - Jun 16^th, 2010 at 10:06am

Just a little personal update.

Still on HRT and still pain free.

Four years ago I was at my highest weight ever and morbidly obese. I feel that some part of the equation for me was my CH zapping my mental and physical energy and I tended to stay in the house in a very sedentary reclusive lifestyle... and food was a great comfort during those long long CH cycles.

Fast forward to today... with the help of HRT for the CH and a lot of effort on my part, I am now 101 pounds lighter than then and I am fortunate to have enlisted an excellent certified personal trainer to visit my home three times per week in order to bring back a level of fitness that has been unknow to me since clusters hit 30 years ago.

My three weekly sessions are based on this format...45 minutes of cardio on the treadmill at minimum 3.5 mph (up to 8 mph)and inclined between 3 to 8%... 50 minutes of plyometrics interspersed with core training and some free weights and kettlebells thrown in for interest sake....followed by 15 minutes of cardio warm down on the treadmill.

My diet has been drastically modified ( by a certified dietition)and I love the new foods, eat 5 times per day and do not miss most of the "bad" foods that I have pledged to never eat again.

I considered a before and after pic, but the before pics are really too gross for public viewing...I never even realized that I was that big, until my transformation took place.

Anyhow, I have a new life and I am making the most of it and as Doctor Oz might say, my biological age is most likey significantly lower than my chronological age, whereas before I started this my biological age was a ticking timebomb and many years advanced beyond my chronological age (and I really did not care...due to the CH...it messed up my thought process so much)

Anyhow, I hope everyone finds something to provide relief of these horrible CH and please try and keep your selves active as I was becoming plagued with health issues (age 51) until I took control...something I should have never have let get so far off track in the first place.

Take care

Paul

Back to top

Paul
"car crazy"

IP Logged

davidj35

CH.com Veteran

Offline

02 is my best friend

Posts: 151
x0|LaGrange|USA||0|0|NY,New_York
Gender: male

Re: WHY don't we pay attention to this?
Reply #218 - Jun 16^th, 2010 at 10:39am

Wow Paul, what fantastic news. Your exercise regime sounds like mine only I can't afford a personal trainer LOL. I too have found being in better shape and eating better seems to help, at minimum with my self esteem. I am getting my insurance this week and I have a Dr's appointment set, however I am going out of cycle and I believe from what I have read that you really need to be in cycle for the hormone test to be accurate? Thanks for this thread it has been very informative.

David

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 #219 - Jun 16^th, 2010 at 11:21am

davidj35 wrote on Jun 16^th, 2010 at 10:39am:

Wow Paul, what fantastic news. Your exercise regime sounds like mine only I can't afford a personal trainer LOL. I too have found being in better shape and eating better seems to help, at minimum with my self esteem. I am getting my insurance this week and I have a Dr's appointment set, however I am going out of cycle and I believe from what I have read that you really need to be in cycle for the hormone test to be accurate? Thanks for this thread it has been very informative.

David

Thanks David.

Yes you will get the lowest testosterone levels when you are in cycle (if you are one of those that have hormone imbalance induced CH)...so it may be a bit of a gamble and if your results come in the mid normal range your doc may be hesitant to retest when you are in cycle in the future.

My tests fell 15 points when I went into cycle (putting me just below low normal)...but now with HRT I am above the high end of the normal range for a guy my age:)

I must caution that as you adjust to hormone treatment, there can be some personality changes, shorter fuse etc that the people around u will notice...this should be closely monitorred by the doctor and your family input should count as they see and experience what u may not notice as a change in yourself... when the correct dose is sorted out eveything should be the same old you...personality wise.

Paul

Back to top

Paul
"car crazy"

IP Logged

davidj35 CH.com Veteran Offline 02 is my best friend Posts: 151 x0\|LaGrange\|USA\|\|0\|0\|NY,New_York Gender:	Re: WHY don't we pay attention to this? Reply #220 - Jun 16^th, 2010 at 12:43pm Thanks for the information Paul, as to the shorter fuse than I have already there will be no fuse .
Back to top	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 #221 - Jun 16^th, 2010 at 7:14pm

Great news Paul! Glad to hear from you again, and gladder still you are getting hold of life again! CH sucks the life right out of you if you aren't careful, taking all purpose from it so that you don't want to do anything constructive other than what must be done to maintain life and livelihood.

your comment about the changes in T levels when in cycle or not are something I've been noticing although I'm chronic. When getting hit hard and often my levels seem to be lower, but when the beast is just cruizing along at a lower level my numbers have been in the normal range. You've helped confirm what I plan to discuss with my Dr next week.

I did not find hormone therapy made my mood all that much worse. Perhaps because knowing it was a probability I worked harder at keeping it under control, but I also found after a few days on it and the resultant lessening of CH my mood actually improved. Right now I'm using it on a sporadic basis, using only when getting hit hard. It has never totally knocked mine out, just lessened them significantly, so when they are at the lower levels I don't use the hormone. I just don't see the need for using it when it is not doing anything constructive for the HA's.

Hope you will continue posting periodically sharing your success. There are a lot of newbies that need to know CH can be beaten.

Jerry
May your PF days never end!

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

MITYRARE

CH.com Old Timer

Offline

autocross racer

Posts: 361
Ontario, Canada
Gender: male

Re: WHY don't we pay attention to this?
Reply #222 - Jun 16^th, 2010 at 9:57pm

Callico wrote on Jun 16^th, 2010 at 7:14pm:

Great news Paul! Glad to hear from you again, and gladder still you are getting hold of life again! CH sucks the life right out of you if you aren't careful, taking all purpose from it so that you don't want to do anything constructive other than what must be done to maintain life and livelihood.

your comment about the changes in T levels when in cycle or not are something I've been noticing although I'm chronic. When getting hit hard and often my levels seem to be lower, but when the beast is just cruizing along at a lower level my numbers have been in the normal range. You've helped confirm what I plan to discuss with my Dr next week.

I did not find hormone therapy made my mood all that much worse. Perhaps because knowing it was a probability I worked harder at keeping it under control, but I also found after a few days on it and the resultant lessening of CH my mood actually improved. Right now I'm using it on a sporadic basis, using only when getting hit hard. It has never totally knocked mine out, just lessened them significantly, so when they are at the lower levels I don't use the hormone. I just don't see the need for using it when it is not doing anything constructive for the HA's.

Hope you will continue posting periodically sharing your success. There are a lot of newbies that need to know CH can be beaten.

Jerry
May your PF days never end!

Thanks for your insights Jerry. I think after a few mood issues early on, I now have a more positive and upbeat attitude which may be because i am not currently suffering or perhaps the hormone has provided that extra energy boost both mentally and physically...i dont know.

Just a thought Jerry but if you only use when you are being hit hard you may talk to your doc about getting injections for a quick entry into the blood versus the gel which takes its time and can take a couple weeks to ramp up to max effectiveness (which varies from person to person as you have noted)...just a thought (and here in Canada I have heard the injections are cheaper).

Thanks for posting again Jerry and here is hoping you get the break you need and deserve.

Paul

Back to top

Paul
"car crazy"

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 #223 - Jul 3^rd, 2010 at 5:42pm still setting my personal remission records every day:) p
Back to top	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 #224 - Jul 3^rd, 2010 at 5:50pm I love it! May it last forever! 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

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