Thanks E-Double!

How's life treating you these days? Still married?

alley

Well,  I Baaaa aaack!  Not happy about it but you all know how this beast does....

Here is what has happened to me in the last 2 years...( Trust me...It will relate eventually to this thread ).  The beast came 2 years ago and my husband and I decided to take our vacation quickly as possible, as it would be vertually IMPOSSIBLE as the cycle continued.  We live in Texas and we packed up the trunk of the car with O2 and headed for the Colorado Rocky Mts.  I was only about 3 weeks into a usual 3 month cycle.  By the time we made it up to Estes Park, the Clusters COMPLETELY dissappeared.  This was absolutlely unheard of in my 18 years of CH.  "Something" broke the cycle...scratching my head, I just thanked God and went cluster free for nearly 13 months.  Another cycle hit and a couple weeks into it we did the same thing....packed off to Estes Park, CO.  They stopped AGAIN!.  Praise God.  Some friends thought it might have something to do with essential oils up there or something.  Who knows?

Now....I have been working at a Bioidentical Hormone Treatment Dr. for a couple of years now.  We have done lots of testing and since I am 55 and though some levels would look " normal " to the untrained classic Dr....they aren't optimal...I HAVE TO STRESS THAT DR'S NOT USED TO PRESCRIBING BIOIDENTICAL HORMONES DO NOT REALLY GO FOR OPTIMAL.....THEY USUALLY THINK NORMAL IS THE USUAL FOR YOUR AGE....and of course it is "usual" for women after a certain age to die of heart attacks, strokes, and get osteoporosis ( all of which can be curbed through hormone treatment ) so I take Progesterone and a very little bit of estrogen and I get a testosterone pellet implant every 3 -4 months.  I am blessed to be able to get it free from my Dr.  I have optimal levels now and physically was feeling better than I have felt in my life.....and then...again the Beast came....unfortunately this time was right AFTER we returned from the Mts.  If the cycle doesn't break soon, I am very tempted to take a 4 day wekend and head for Estes Park to see if it breaks the clcle again.

On another note....I saw a thread earlier about Clomed being used to help clusters.  As you might know it is often prescribed for men to stop the conversion of Testosterone to Estrogen.  It is also used for fertility in women.  I believe it also somehow effects the hypothalmous....As I shared on the other thread I am going to experiment with hcg....a pregnancy hormone that is currently being used off label for weight loss.  I am about ready to start this diet....for the 2nd time.  I lost 20 lbs the first time and have kept it off.  I can stand to lose another 20, but am most interested in seeing if it breaks this cycle.  I hope to start it next weekend.  It is a 6 week thing, so I will keep you posted.  I am currently in week 2 of my usual 3 month cycle...

Sorry for rambling, but it has been a long time since I was here and wanted to catch up.

Hi E-Double...Hi Nani....and everybody that I met in Dallas a few years back!

I got the results of my blood test today. My Neuro ordered the test at my request but had my GP review it as it was quicker since I had an appointment today.

Results were enough to have my GP get more specific blood work ordered as my levels were a little low as were my platlets.

I'm grateful for this post. Thank you

Iddy

Just read this whole thread, and can't wait to see my doctor.

I hope you all keep it going, It is very interesting.

I have been in remision for 2 years, and am just back. Had my first big one last night (k-9) after 2 weeks of shadows....I have been reading and trying to catch up on the latest, before I go to the dr again.

Thanks a bunch     Lorac

still on testosterone and still in remission.

26 more days til I break my "longest remission" period in 30 years.

Fingers crossed!

Paul

MarkG253 wrote on Aug 25^th, 2009 at 2:14pm:



Fingers crossed for you Mark...a one month test should be enough to see if you respond at all to this treatment assuming you are in full cycle now.
Glad to hear your Doc has an open mind.
Paul

Paul, this is excellent news...!

I thought I would post this journal extract with similar positive results.

To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy.

Background.—Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized.

Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin. Results.—Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels.

The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration.

After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours.

Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission. Conclusions.—Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy.

In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.

Journal: Headache: The Journal of Head & Face Pain
Pub.: 2006-06
Volume: 46

Lefty..!

MarkG253 wrote on Aug 27^th, 2009 at 8:00pm:


Oh man, I hear ya...... but just a caution that my doc told me....that wishing it would work can be enough some time to tip the body's balance in favour of the result you want....the true test is over time.....after three months my doctor conceeded that now he was getting very excited about the effects of the testosterone....and now 8 1/2 months later he is absolutely convinced of the effects of the treatment.

I hope you are every bit as lucky....rock on, and enjoy every pain free minute.  My life has been transformed in such a way that only a chronic sufferer that becomes pain free can appreciate...I wish everyone will get the chance to experience it regardless of which type of treatment does it for them.

Paul

Hi everyone...it's been a while.

Every day now, I am breaking my own record for the longest remission ever since getting CH about 30 years ago...I am heading into 10 month territory.

I still feel shadows from time to time, but not one has broken through to cause the agony I have historically endured and only you fellow CHers can understand.

My testosterone therapy continues using Androgel and my levels are significantly above the range which would be considered normal....this concerns me somewhat as I wonder at what point the doctor will reduce my dose (to minimize risks associated with too much testosterone)...will a reduced dose result in the return of CH??

I will continue to post from time to time for those interested in this new approach to CH management for intractable cases.



Paul

John B wrote on Oct 7^th, 2009 at 1:24pm:



My doc had heard of this happening and the general concensus of the docs who prescribe hormone  for clusters, is that a slow release gel or pellets are the only way to stabilize and even out the amount of testosterone in the bloodstream. Rebounds are said to occur with injections due to the way they cause rapid rise and fall of hormone levels rather than a constant rate.

That being said, hormone manipulation only works for some just as other medications may only work for some.

P

Jimi wrote on Oct 7^th, 2009 at 3:26pm:

I am.

Hi

Try taking vitamin-D and get your blood level up between 50-80 ng/ml. It will regulate your testosterone, serotonin and melatonin level to normal. I haven’t had any CH for 8 months now. Another benefit is that my PSA has decreased over 20 %.

Niels   

Thank you for this post.
I am compiling a list of things for my husband to try as he's only recently been diagnosed, and he has an appointment with doc next week.. so I shall get him to have test.. fingers crossed!