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  New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › WHY don't we pay attention to this?
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WHY don't we pay attention to this? (Read 133447 times)
Ray
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Re: WHY don't we pay attention to this?
Reply #25 - Dec 5th, 2008 at 7:11pm  
On a lighter note...

I told my wife, Shade, AKA HerbLady, that I was going to be tested for low testosterone.  She informed me that she can barely keep up with me NOW, and I may wind up sleeping in another room if I get supplemented on my testosterone....


Grin

Ray
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MITYRARE
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Re: WHY don't we pay attention to this?
Reply #26 - Dec 5th, 2008 at 7:15pm  
Ray wrote on Dec 5th, 2008 at 7:11pm:
On a lighter note...

I told my wife, Shade, AKA HerbLady, that I was going to be tested for low testosterone.  She informed me that she can barely keep up with me NOW, and I may wind up sleeping in another room if I get supplemented on my testosterone....


Grin

Ray



I hear ya Ray....my wife had a million questions when I came home from the Dr. and informed her that i will be getting some testosterone therapy...she seemed genuinely worried...hahahah!
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« Last Edit: Dec 5th, 2008 at 7:16pm by MITYRARE »  
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Re: WHY don't we pay attention to this?
Reply #27 - Dec 5th, 2008 at 7:16pm  
Found one of them:

Low plasma testosterone levels in cluster headache
Alfredo Romiti , Paolo Martelletti , Maria Francesca Gallo and Mario Giacovazzo
  Headache Service, Department of Internal Medicine, H Clinica Medica, Rome University, Viale del Policlinico, 00161 Rome, Italy


*Data presented in part of the Fifth National Congress of the Italian Headache Society, L'Aquila, July 1981.

"Serum levels of various hormones have been estimated in cluster headache and non-cluster headache controls. Cluster headache patients were studied prior to, during, and after attack. During the cluster phase, plasma testosterone levels were low, whereas levels were within the reference limits in the remission period of episodic cluster headache. LH levels were within reference limits."

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Re: WHY don't we pay attention to this?
Reply #28 - Dec 5th, 2008 at 7:20pm  
Garys_Girl wrote on Dec 5th, 2008 at 7:16pm:
Found one of them:

Low plasma testosterone levels in cluster headache
Alfredo Romiti , Paolo Martelletti , Maria Francesca Gallo and Mario Giacovazzo
 Headache Service, Department of Internal Medicine, H Clinica Medica, Rome University, Viale del Policlinico, 00161 Rome, Italy


*Data presented in part of the Fifth National Congress of the Italian Headache Society, L'Aquila, July 1981.

"Serum levels of various hormones have been estimated in cluster headache and non-cluster headache controls. Cluster headache patients were studied prior to, during, and after attack. During the cluster phase, plasma testosterone levels were low, whereas levels were within the reference limits in the remission period of episodic cluster headache. LH levels were within reference limits."

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Laurie



This is exactly what my Dr. wants to track over the next couple of years worth of cycles, and see how hormone therapy affects our existing drug therapy and/ or go back and revisit previously tried therapies with enhanced hormone levels during cycles.

Paul
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Re: WHY don't we pay attention to this?
Reply #29 - Dec 6th, 2008 at 10:14pm  
Well, I can't afford it, but my doc is interested, and I sure am too- because right about the time it started creeping in this summer, I noticed that I was growing a friggin' beard! Now, all the women in my family have one or two beard-type hairs on their chin (as opposed to just some dark "vellus" or body hair)  but I noticed these buggers were coming in in spades- I have about 6 or 7 on each side now.  AND I'm breaking out.  Bad.  I'm 32, and back in college- and I look worse than the freshmen!!! Cheesy

Of course, the worst part was when I found a GRAY BEARD HAIR.  I just went back to bed for the day.  Grin
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Re: WHY don't we pay attention to this?
Reply #30 - Dec 7th, 2008 at 7:29am  
What about progesterone?  Those levels elevate when a woman is pregnant, and most (not all) women's attacks cease when their pregnant.

From Wiki (take it for what it's worth)

Quote:
Nervous system
Progesterone, like pregnenolone and dehydroepiandrosterone, belongs to the group of neurosteroids that are found in high concentrations in certain areas in the brain and are synthesized there.

Neurosteroids affect synaptic functioning, are neuroprotective, and affect myelination.[13] They are investigated for their potential to improve memory and cognitive ability.

Progesterone as neuroprotectant affects regulation of apoptotic genes.

Its effect as a neurosteroid works predominantly through the GSK-3 beta pathway, as an inhibitor. (Other GSK-3 beta inhibitors include bipolar mood stabilizers, lithium and valproic acid.)


Other systems
It raises epidermal growth factor-1 levels, a factor often used to induce proliferation, and used to sustain cultures, of stem cells.
It increases core temperature (thermogenic function) during ovulation.[14]
It reduces spasm and relaxes smooth muscle. Bronchi are widened and mucus regulated. (Progesterone receptors are widely present in submucosal tissue.)
It acts as an antiinflammatory agent and regulates the immune response.
It reduces gall-bladder activity.[15]
It normalizes blood clotting and vascular tone, zinc and copper levels, cell oxygen levels, and use of fat stores for energy.
It assists in thyroid function, in bone building by osteoblasts, in bone, teeth, gums, joint, tendon, ligament and skin resilience and in some cases healing by regulating various types of collagen, and in nerve function and healing by regulating myelin.
It appears to prevent endometrial cancer (involving the uterine lining) by regulating the effects of estrogen.


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Re: WHY don't we pay attention to this?
Reply #31 - Dec 11th, 2008 at 5:14am  
I've always been an episodic CHer until last week when I got my first ever cycle. I've been on Topimax for about two years and it kept the episodes away, but with this cycle I'm getting a very low level daily shadow that I can live with. I wanted to get into my doc for a complete hormone check, but she has been out. Hopefully I can get it checked before going out of cycle to add more data for the female sufferers.
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Re: WHY don't we pay attention to this?
Reply #32 - Dec 12th, 2008 at 3:19pm  
PSA test came back good and today the dreaded digital prostrate test checked out OK. The Dr. prescribed the gel testosterone which comes in a pump bottle like hand creme. You pump the # of pumps prescribed and then it is rubbed into the shoulders and bicept area of the arms. This provides a more even hormone balance in your system than the injection method, and is better (in my opinion) than wearing a patch around all the time. The stuff is like a clear glycerine gel that disappears into the skin in seconds.

Now the monitorring of both hormone levels and CH begins.

I'll keep you posted of any earth shattering remissions within hours of my first application haha!

Paul
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« Last Edit: Dec 12th, 2008 at 6:46pm by MITYRARE »  
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Re: WHY don't we pay attention to this?
Reply #33 - Dec 12th, 2008 at 7:49pm  
I don't have my results in front of me right now but if I remember correctly I had low FSH level (1 U/L) and low testosterone (but it was still in "normal values"). I am chronic.
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Re: WHY don't we pay attention to this?
Reply #34 - Dec 12th, 2008 at 8:25pm  

I posted about low testosterone during a cycle on the board 2 years ago and was poo-pooed by a lot of people here.

I read several articles on the finding of low testosterone and did the tests on my now late husband. His testosterone level was low during cycle and returned to normal when out of it.

He received testosterone supplement via injections which returned his level to normal, but did nothing for his headaches. Disappointedly he must have fallen into the 30% for which this would not work.

Testosterone is part of the hypothalamus-pituitary-gonadal axis so it can certainly be affected while the whole system malfunctions during a cycle. However, it is but one of the many things that can and do go wrong during a cycle, therefore fixing it may or may not help one particular person's headaches, but its worth checking and following up.
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Re: WHY don't we pay attention to this?
Reply #35 - Dec 12th, 2008 at 9:04pm  
Quote:
I posted about low testosterone during a cycle on the board 2 years ago and was poo-pooed by a lot of people here.

I read several articles on the finding of low testosterone and did the tests on my now late husband. His testosterone level was low during cycle and returned to normal when out of it.

He received testosterone supplement via injections which returned his level to normal, but did nothing for his headaches. Disappointedly he must have fallen into the 30% for which this would not work.

Testosterone is part of the hypothalamus-pituitary-gonadal axis so it can certainly be affected while the whole system malfunctions during a cycle. However, it is but one of the many things that can and do go wrong during a cycle, therefore fixing it may or may not help one particular person's headaches, but its worth checking and following up.



I am sorry to hear that you got "poo pooed", but i am not terribly surprised (considering what i have witnessed on the site from time to time with anything suggested other than the good old standard O2 and traditional drug therapies for the majority). Anything else is considered "quackery"
 
I have been lurking here on and off  for several years and just recently thought I should contribute seeing as I feel i have learned alot and then I noticed a post about hormone and a link to additional info which I took to my Dr. and now we are turning over this stone to see if it bears any piece of my neurological puzzle.

Thank you for your post and i agree with your last paragraph.

My doctor is very progressive and treats the whole person, not just the symptoms; as all the complexities of the body interact and the mystery of which imbalance in my body's interconnected systems causes these headaches, the quest that both my medical team and I are chasing. And yes, we are all wired/plumbed different, so what works for one does not always work for the next.

Paul
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Re: WHY don't we pay attention to this?
Reply #36 - Dec 13th, 2008 at 12:56am  
[quote author=5B5F424F44574453160 link=1228226896/35#35
My doctor is very progressive and treats the whole person, not just the symptoms; as all the complexities of the body interact and the mystery of which imbalance in my body's interconnected systems causes these headaches, the quest that both my medical team and I are chasing. And yes, we are all wired/plumbed different, so what works for one does not always work for the next.

Paul
[/quote]


Thanks Paul for the kind words. Its much appreciated.

I have been advocating for a multi-disciplinary course of treatment for CH where the whole person is looked at. Everything should be checked and reviewed from diet to sleeping patterns to musculoskeletal to mental health to even stopping smoking. CH affects many many aspects of the person: physically, mentally and emotionally.

The reason these suggestions have not been well received because each single treatment does not and can not stop CH. In combination they can help but then again the result varies from person to person.

I understand when a person is in the grip of this inhuman pain, he/she is desparate for a silver bullet that will stop the beast in its track. By this, we are talking abortive treatment, for which the best are still oxygen and ergotamine such as imitrex. Some psychometric meds and subtances show great promise also but they are less understood.

Multidiscipline regime is more for preventive. It takes time, it takes a lot of effort and the results can not be seen quickly enough for someone in the midst of pain.

Episodic CHers suffer so much during a cycle that as soon as it stops, they tend to prefer not to think about it and they want to go about living their lives to the fullest, doing all the things they cant do in a cycle like drinking and going out. The last thing they feel like doing is starting to modify their lifestyle, diet and fitness. They feel that having CH is restrictive enough, they dont want to have to modify their lives in any other way. I know because my late husband was like this too. When out of cycle, he did not want to even talk about it, preferring to deal with it if and when it does return. Unfortunately, by the time the cycle starts again, if the body is not in tiptop condition, ready for combat, its too late to start then.

Chronic suffers tend to have worked out their own effective ways of coping and managing, and they dont feel the need to try something new as much as someone first starting. From what I have read here, many chronic CHers already modify their diet, their lifestyle etc from their own experience dealing with the morphing beast. It is not viewed as " alternative medicine" but rather " one has to do what one has to do" to cope.

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Re: WHY don't we pay attention to this?
Reply #37 - Dec 13th, 2008 at 11:19am  



QUOTE "Thanks Paul for the kind words. Its much appreciated.

I have been advocating for a multi-disciplinary course of treatment for CH where the whole person is looked at. Everything should be checked and reviewed from diet to sleeping patterns to musculoskeletal to mental health to even stopping smoking. CH affects many many aspects of the person: physically, mentally and emotionally.

The reason these suggestions have not been well received because each single treatment does not and can not stop CH. In combination they can help but then again the result varies from person to person.

I understand when a person is in the grip of this inhuman pain, he/she is desparate for a silver bullet that will stop the beast in its track. By this, we are talking abortive treatment, for which the best are still oxygen and ergotamine such as imitrex. Some psychometric meds and subtances show great promise also but they are less understood.

Multidiscipline regime is more for preventive. It takes time, it takes a lot of effort and the results can not be seen quickly enough for someone in the midst of pain.

Episodic CHers suffer so much during a cycle that as soon as it stops, they tend to prefer not to think about it and they want to go about living their lives to the fullest, doing all the things they cant do in a cycle like drinking and going out. The last thing they feel like doing is starting to modify their lifestyle, diet and fitness. They feel that having CH is restrictive enough, they dont want to have to modify their lives in any other way. I know because my late husband was like this too. When out of cycle, he did not want to even talk about it, preferring to deal with it if and when it does return. Unfortunately, by the time the cycle starts again, if the body is not in tiptop condition, ready for combat, its too late to start then.

Chronic suffers tend to have worked out their own effective ways of coping and managing, and they dont feel the need to try something new as much as someone first starting. From what I have read here, many chronic CHers already modify their diet, their lifestyle etc from their own experience dealing with the morphing beast. It is not viewed as " alternative medicine" but rather " one has to do what one has to do" to cope.

[/quote]


Yes, I agree.
A little over two years ago, my mother in her seventies battled breast cancer and had to travel daily a long distance to Toronto for 36 consecutive days of extreme radiation ( more than is "normal" for breast cancer). When I saw what she could do to survive, I had my wake up call to get myself in order.
I enrolled in an extreme weight loss program...lost 85 pounds ...and have not gained any back in over two years..adjusted my eating habits...i am more active now....took up race car driving again ( now i fit in race cars again haha) and I am more focussed than ever to tackle every challenge in my business life and my health. My business had been successful before but in the last two years it has headed into uncharted territory and my health has been better than it has been in 20 years...now the CH is my last big hurdle...i have been resistant to almost every drug out there and in recent years a combo of amitryptilene and Topamax has taken the sharp edge off them ( down to Kip 7/8 or less when I am lucky) but in this most recent cycle the Topamax is losing its effectiveness....same old same old....hopefully the hormone balance issue may provide a base whereby traditional therapies may work...who knows.....maybe the CH will just vanish forever...even a remission would be nice....my longest in 30 years was only 9 months.
I feel like my time is coming soon to get a break with the beast.
Always the optimist
Paul
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« Last Edit: Dec 13th, 2008 at 11:23am by MITYRARE »  
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Re: WHY don't we pay attention to this?
Reply #38 - Dec 13th, 2008 at 2:04pm  
"Always the optimist.

Paul"

As you should be, Paul. I've been in remission now for 28 years, and have been advocating this testing since I arrived here 9 years ago.

As I explained in the Cluster Headache Specific section under "My experience with testosterone imbalance" on page 2 , I am certain that mine were directly related to hormone imbalance.

Nice to see you Annette.  I enjoy your posts.
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Re: WHY don't we pay attention to this?
Reply #39 - Dec 15th, 2008 at 6:14pm  
Lucky break?
Coincidence?

Four days into testosterone treatment....my 24/7 migraine like constant headache has diminished in intensity....and my 8 to 10 daily CH which last for 15 min to 45 min have in the last two days diminished to 5 per day and intensity has diminished from average of Kip 7/8 to 4/5 ....and I always experience a 2 1/2  to 3 hour major CH at least every other day and i have not had one since friday night/early saturday morning...i am still suffering but compared to "normal" this is a lucky break.

Has the change in weather (has gotten dramatically mild) made the difference?

Has the Topamax started to work again? (it has lost its effectiveness for me this year)

Has the hormone therapy changed something fundamental to the CH or the way in which the meds are working?

Am i just getting a lucky mid cycle break?

Ive seen weather changes before so I'm thinkin this hormone stuff might be doing something.....Thought it was worthy of an update...I am pleased regardless of the cause!

More follow ups as time passes.

Wishing you all pain free time with those you love.

Paul
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« Last Edit: Dec 15th, 2008 at 6:15pm by MITYRARE »  
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Re: WHY don't we pay attention to this?
Reply #40 - Dec 15th, 2008 at 7:33pm  
Well, that made my heart skip a beat!  

So happy to hear of your "little break", whatever the reason. I'm still wishing, hoping and praying that something comes of this HRT.

I'll be waiting for the next update.

Donna  Cool
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Re: WHY don't we pay attention to this?
Reply #41 - Dec 16th, 2008 at 10:03pm  
MITYRARE wrote on Dec 12th, 2008 at 3:19pm:
I'll keep you posted of any earth shattering remissions within hours of my first application


Is that "remissions" or "emissions" Paul?  heheheeheee  Wink
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Re: WHY don't we pay attention to this?
Reply #42 - Dec 17th, 2008 at 1:13am  
I know it was only 31 hours since i last posted but the weather has turned very cold and nasty again....and my head has continued to improve...mild migraine and 7 CH in the last 24 hours no more than KIP 4   STOP THE PRESSES...THIS IS MAJOR NEWS FOR ME

So now that the fair weather variable is out of the equation...either the Topamax is doing better than it ever has, or I am being miraculously healed( power of positive thinking maybe?) or HRT is working.

hmmmmmn

Time for an experiment (sssssshhhhh do not tell my neuro   i am going to start to taper off Topamax and see if CH symptoms change) As you know I will only drop 25 mg every 5 days and I will track any changes in CH should they occur and taper back up if trouble should erupt.


Stay tuned  - this is turning out to be the most interesting CH change for me in many years...coincidence or not (maybe just the power of positive thinking....but i am going to make the most of it)

Paul
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« Last Edit: Dec 17th, 2008 at 1:13am by MITYRARE »  
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Re: WHY don't we pay attention to this?
Reply #43 - Dec 17th, 2008 at 11:12am  
Reading this post, and with the line of non standard things that seem to help some people, some times, there just seems to be a common thread.

Few of these non drug things are mutually exclusive, like dialing in your diet, avoiding heat of cold, exercise or stretching, chem and testosterone levels, seasonal allergy tests for the seasonal types, maybe working on the muscles or bones, checking other glandular functions; to wit the whole body concept.

Remission in my peanut brain, is a state where somehow your body manages to conquer whatever things went out of sync to let an episode begin, after all, a healthy body isn't supposed to hurt like this.

We tend to try something new, then wait and see if it works, and do not much else. Other than perhaps the psychedelics, most everything we talk about is concentrated on stopping headaches, the O2, the drugs and such, usually while not working on the episode.

While we do all of these headache specific things, it just seems to make sense to keep working on the whole body. While no specific thing will cure everyone, I can't see where an overall group of common sense things, whole body if you will, can hurt, especially when done in conjunction with the standard drugs and things that the doctor has prescribed.

Sort of like standing in the shower after chugging a Red Bull, doing a sub lingual Relpax, while sucking on O2 (yesterday). Figure multi approaches sort of increases the odds in our favor.

Wish you all PF for the holidays, wouldn't it be nice?

Chris
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Re: WHY don't we pay attention to this?
Reply #44 - Dec 18th, 2008 at 12:15am  
It's funny- the whole talk about working on whole body health- because my mother just doesn't get it yet about CH and aside from all the stupid advice she gives me (and no, she hasn't even looked it up in the internet yet!) she was just bitching at me yesterday about all the CAFFEINE I drink, and how THAT is what's probably causing the headaches!!!  Grin Grin Grin

(come to think of it, I think my MOTHER causes CH.  I'll have to run some tests on that.)
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Re: WHY don't we pay attention to this?
Reply #45 - Dec 18th, 2008 at 11:43am  
"(come to think of it, I think my MOTHER causes CH.  I'll have to run some tests on that.)"
[/color]

You might be on to something![color=#ff33ff]
[color=#000000][/color]
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« Last Edit: Dec 18th, 2008 at 11:43am by MITYRARE »  
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Re: WHY don't we pay attention to this?
Reply #46 - Dec 19th, 2008 at 3:45pm  
MY WEEK #1 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

H
ave noticeably decreased pain levels of CH

Have noticeably decreased pain level of 24/7 chronic cluster period migraine

have had a 24 hour CH free period

have trouble sleeping even with increased doseage of Amitryptilene (common side effect of HRT)...have not had one minute of sleep in the past 36 hours and do not feel tired at all....really strange super-human feeling considering i am still at 175mg of Topamax per day....will continue to increase Amitrip. to compensate


I will drop another 25 mg of Topamax this week in my experiment to eliminate the Topamax as a factor in my CH improvement of late.

Till next week
Paul
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Re: WHY don't we pay attention to this?
Reply #47 - Dec 20th, 2008 at 9:35am  
I want to thank you for doing this, Paul.  This is a serious matter and I'm hoping some will take notice and join you. I wish the professionals would do a study announcing large scale percentages.


Donna  Cool
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Re: WHY don't we pay attention to this?
Reply #48 - Dec 22nd, 2008 at 6:35pm  
I have figured out the correct amount of amit. to have good sleep the last three nights now and WOW headaches getting fewer and farther between....
is this the power of positive thinking or the HRT?


This is going to be the least painful Christmas in memory. I am looking forward to enjoying it so much this year.

Unbelievable!

Why don't more CH people pay attention to this?
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Re: WHY don't we pay attention to this?
Reply #49 - Dec 22nd, 2008 at 7:11pm  
Got home from the docs with not the results I was hoping for. I had all hormones checked. The results were smack in the middle range for someone who has finished with the change of life; I was so hoping the results would be off and we would have a reason for the headaches. I did order a light therapy light in hopes that re-regulating the melatonin and seratonin might help.
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