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        New Message Board Archives >> 2003 Posts >> New Drug (at least for clusters)
        
(Message started by: MarkHW on Oct 21^st, 2003, 10:28am)

Title: New Drug (at least for clusters)
Post by MarkHW on Oct 21^st, 2003, 10:28am

I already posted this on the drug board, but wanted to make sure everyone saw it.

I went to mayo clinic about 3 months ago to see about the stimulator implants they were doing. I was told I was a candidate, but that they wanted to try a few drugs first.

They tried some stuff I had already been on but in new combos... as I suspected, they didn't work.

The last trial was something they weren't sure of, but they wanted to give a shot.

2 1/2 weeks ago I started on Clomid (usually used for fertility in men and women). I went off most of my other meds and have not had a cluster since starting the Clomid. I am chronic and usually have 2-3 clusters a day without meds and with the huge cocktail I was on I was still having 1 cluster / day.

This 2 1/2 weeks is the longest I have gone since sansert stopped working for me. So far, no side effects.

Dr. Gladstone at mayo tried the drug because it worked (by accident) on another patient at the clinic. He did some research and saw that clomid does affect the hypothalmus. If this continues to work, he has said that a paper will be written on the subject.

The big problem is getting insurance to cover it. Since it is not FDA approved for headache of any kind and is used for fertility - I had to fight hard to get a 6 month trial coverage.

I am on the standard 50 mg dose / day.

Mark

Title: Re: New Drug (at least for clusters)
Post by Woobie on Oct 21^st, 2003, 9:58pm

WOW!!
I hope it continues to work!!!

Wouldn't that be cool?? to accidently find the magic pill?

- but - watch out- you could have quadruplets if you're not careful! [smiley=yikes.gif]

LOL! Let us know if it continues to work!!

tina :-*

Title: Re: New Drug (at least for clusters)
Post by athos12 on Oct 22^nd, 2003, 3:15am

A desired side effect?

Title: Re: New Drug (at least for clusters)
Post by Melissa on Oct 22^nd, 2003, 7:03am

Clomid is given to women to treat ovulation problems. I can see why your doctor said "given to another patient by accident", was it a man? LOL. I was on it myself for infertility problems, but couldn't handle the side effects so I stopped taking it. BUT I am so happy for you that you have found relief! I hope to see more "accidents" happening so we can find out a general consensus of how many ch'ers it would help. Please keep us updated of your progression!

Thanks,
:)mel

P.S. I can just see a bunch of male CH'ers heading to OBGYN's and fertility clinics now, LMAO

Title: Re: New Drug (at least for clusters)
Post by brain_cramps on Oct 22^nd, 2003, 7:10am

on 10/21/03 at 21:58:45, Woobie wrote:

...but - watch out- you could have quadruplets if you're not careful! [smiley=yikes.gif]...

GREAT use of the new smilies... Best I've seen so far. [smiley=crackup.gif]

grant [smiley=laugh.gif]

Title: Re: New Drug (at least for clusters)
Post by Donna on Oct 22^nd, 2003, 7:40am

See? My testosterone theory may not be so silly after all.

Title: Re: New Drug (at least for clusters)
Post by River_Rat on Oct 22^nd, 2003, 10:24am

[smiley=shore.gif]

SOUNDS LIKE GREAT NEWS!! Maybe this is it.

What kind of side effects did you have Mel?

LEE

Title: Re: New Drug (at least for clusters)
Post by Melissa on Oct 22^nd, 2003, 10:39am

Quote:

What kind of side effects did you have Mel?

Extreme mood swings and cramping.

The cramping was also due in part to my endometriosis, and I think the mood swings were so bad because of that also, but I was on antidepressants too at the time. I seem to get every side effect there is to any drug I take. ::)

Title: Re: New Drug (at least for clusters)
Post by MarkHW on Oct 22^nd, 2003, 2:30pm

Actually Clomid is giving to both men and women for fertility issues. It stops estrogen from binding, causing women to ovulate and men to have higher sperm counts.

The "accident" was that the Dr.s at mayo didn't put him on it. It was a fertility Dr. Then when his wife got pregnent they took him off and the clusters returned. He is now on it again.

I have had no side effects, but being male I don't ovulate, so.....

Still no cluster!
Mark

Title: Re: New Drug (at least for clusters)
Post by MarkHW on Oct 22^nd, 2003, 2:31pm

BTW Don posted in the other board that Clomid keeps Estrogen from binding to tissue including the Hypothalmus and pituitary glands. I wonder how seratonin is related???

Either way... it's working!
Mark

Title: Re: New Drug (at least for clusters)
Post by totka on Oct 22^nd, 2003, 2:50pm

This is a hypothalamus stimulating drug - it may be effective at CH ... but take care of pregnancy ;;D

Title: Re: New Drug (at least for clusters)
Post by Melissa on Oct 22^nd, 2003, 3:04pm

I had no idea men took it too! :o

Wow, learn somethin new each day around here. Anyhow, I am still happy for ya Mark! ;;D

Title: Re: New Drug (at least for clusters)
Post by MarkHW on Oct 22^nd, 2003, 3:44pm

I originally thought it was for women only also.
After Dr. Gladstone at Mayo mentioned it, I searched the web and found that most articles were about women, but they did have men taking it too.

I feel better about that.... Only because I would hate to be one of the first men taking a drug with no idea what side effects men would have on it.

Dr. Gladstone was supposed to talk to a Fertility specialist to see about long term effects.

This is the first drug that I've taken that hasn't required a dosage increase within days of starting it. It is also the first drug that has given me no visible side effects.

Thanks!
Mark

Title: Re: New Drug (at least for clusters)
Post by Woobie on Oct 22^nd, 2003, 4:03pm

WOW!!

This is good..

Title: Re: New Drug (at least for clusters)
Post by Unsolved on Oct 23^rd, 2003, 8:28pm

I also start taking this drug this weekend. Hope it works for me like it has for you. Also scheduled for a 2^nd RF procedure this time targeting the Occipital nerves (last time was the Facet nerves), but doc wants to wait to see how this drug effects my CH.

Title: Re: New Drug (at least for clusters)
Post by MarkHW on Oct 27^th, 2003, 4:16pm

Over 3 weeks cluster free... I seem to be getting 1 migraine a week, but this is nothing compared to multiple, daily clusters!!

Dr. Gladstone said that one more week cluster free and they will be doing the write up on Clomid for Clusters!

Mark

Title: Re: New Drug (at least for clusters)
Post by BarbaraD on Oct 27^th, 2003, 4:39pm

Wonder how it works on Post menapausal old broads? I'll take the quads if it comes to that, but wonder about the side effects. Never did well with harmones back before senility set in.

But I'm scared to death that the topamax is losing effect and that I'm going back to where I was in 1999 and that's freakin' me out. If this works.......

Please keep us posted. I'm sure my neuro is up to date on this, but just to be sure I'm sending him this post.

Hugs BD

Title: Re: New Drug (at least for clusters)
Post by Unsolved on Oct 28^th, 2003, 9:07pm

Clomid 50 mg tablets / 1 tablet a day for 5 days then report pregress to neuro's in Indiana and Michigan.
Brand name "Clomiphene Citrate"
Hope that helps.

Title: Re: New Drug (at least for clusters)
Post by Mastifflvr28 on Oct 29^th, 2003, 12:53am

Have you started yet Unsolved...and if so, how's it going?

Thanks for the updates guys,
Mast

Title: Re: New Drug (at least for clusters)
Post by Unsolved on Oct 29^th, 2003, 2:42am

I'll take my first pill on 10/29 @ around 8:30 am.
:o ??? :-/
Don't know much yet ...i'll post about it in a few days

Title: Re: New Drug (at least for clusters)
Post by Hirvimaki on Oct 29^th, 2003, 9:21am

Geez... Makes me want to swipe my wife's Clomid. Please keep us updated on your progress. I am very curious about this - especially with a bottle of the stuff sitting in the bathroom cabinet! :)

Hirvimaki

Title: Re: New Drug (at least for clusters)
Post by NotH20 on Oct 29^th, 2003, 10:03am

I'm truly amazed at these posts!! :o We've been going to the fertility doc for almost two years, During that time, I took two separate rounds of Clomid (very nasty medication w/ hot flashes and mood swings) and I was afraid during those two separate rounds that it would put into a cycle again. Luckily it didn't do that and I'm still ch free.

This is all sounding so positive and I surely hope that it works for sufferers.

Mark, please keep us posted of your progress.

Unsolved - today is the day - also please keep us posted on your experiences.

Good luck to you all....
Mia

Title: Re: New Drug (at least for clusters)
Post by MarkHW on Nov 1^st, 2003, 9:08am

Hey all...

It has now been 4 weeks and I am completely cluster free!

I have had some migraine, but that even seems to be tapering off.

I am very excited.

Dr. Gladstone at Mayo said that when I hit 4 weeks cluster free he would start writting this all up.

So... Look for news soon. I'm going to email him monday and I will ask if I can post anything here or on the OUCH site from him.

This rocks!!! Cluster Free and Fertile!!! ;;D
Mark

Title: Re: New Drug (at least for clusters)
Post by Cerberus on Nov 1^st, 2003, 9:15am

WOO HOO!!!!!!!!!!!!!!!!

That's awesome!!!

[smiley=heart.gif]Tina

Title: Re: New Drug (at least for clusters)
Post by MarkHW on Nov 1^st, 2003, 9:07pm

I did the ultimate test tonight...
I drank alcohol.

Usually even 1/3 of a glass of alcohol is enough to trigger a cluster within 30 minutes of consumption. Tonight I drank an entire bottle of hard cider and 3 hours later, I still have no cluster!!!

So far, so good!
Mark

Title: Re: New Drug (at least for clusters)
Post by Charlie on Nov 1^st, 2003, 10:59pm

Some interesting and good news. 8)

Clusterheads will no doubt put up with a hell of a lot of side-effects to kill this horror. Let us know how it works out.

Charlie

Title: Re: New Drug (at least for clusters)
Post by OneEyeBlind on Nov 2^nd, 2003, 5:56am

Whoooooooooo Hoooooooooooooo !!! Cluster free, fertile and have a slight buzz ....... does it get any better than that ?? :D

Title: Re: New Drug (at least for clusters)
Post by SommelierCH on Nov 2^nd, 2003, 6:58am

Very cool MarkHW! As we all know, none of the drugs that we use were made for ClusterHeadaches, serendipity plays a big role in what works for us. The fact that you cleaned yourself from your other drugs is a very interesting point. I’ve always wondered if all the drugs that are taken that don’t work on Clusters, keeps our bodies from being able to respond when the right drug shows up. Here is some more info, with the corresponding web site address.

Pain free days and nights to you, bro, our guinea pig.
David J.

(Excerpt from: http://www.inciid.org/clomidberger.html )

The InterNational Council
on Infertility Information
Dissemination, Inc.
Clomid Use and Abuse
Clomiphene Citrate (Clomid, Serophene)
by Gary S. Berger, M.D.

Some women can't get pregnant because they don't secrete enough LH and FSH at the right time during the cycle and, as a result, they don't ovulate. For these women, the first drug doctors often prescribe is clomiphene citrate (Clomid, Serophene). This synthetic drug stimulates the hypothalamus to release more GnRH, which then prompts the pituitary to release more LH and FSH, and thus increases the stimulation of the ovary to begin to produce a mature egg.

(Excerpt from: http://www.tryingtoconceive.com/clomid.htm )
CLOMID WARNING!!!
I just wanted to let your readers know that if you have EVER used
Clomid, no matter for how long or short of a time, you and maybe your
whole family is UNINSURABLE if you have to apply for individual
coverage. Individual coverage is most often used by someone who is
self-employed or doesn't have benefits at work. Although there are few
side effects and an extremely low rate of multiple births, insurance
companies use it as a cop-out to deny health care coverage. I was told
by a number of underwriters if you have ever taken it they won't insure
you, no matter what. My Dr. has helped me write letters but it's no use.
I loved the chance to have my children, but now my children don't have
insurance because of what I didn't know.
Sign me - cwm

(Excerpt from: http://www.conceivingconcepts.com/learning/articles/0020.html )
Can I afford it?
On a more positive note, Clomid is one of the more affordable fertility drugs, and it has a generic equivalent. A five-day supply of 50-mg tablets can run from $15 to $35. Obviously, it gets more expensive when you triple or even quadruple the dosage. Generally, research shows that if the drug doesn't work in four to six cycles, it isn't likely to work. However, if you take a break and start over, perhaps with the addition of HCG or an insulin sensitizer for women with PCOS, then you may elect to start the four to six cycles over again.

What are the risks?
As with most ovulation-inducing drugs, there is a risk of ovarian hyperstimulation. Cysts can erupt and ovaries can be enlarged. This is rarely serious and is more common with other fertility medications. However, if you are taking this medication and have unexplained pain, call your doctor. A quick ultrasound can determine if there are any problems. This drug should not be taken if you are pregnant or have a history of liver disease.
Several years ago, there research findings were reported stating that Clomid increased a woman's chance of getting cervical cancer. The data associated with that study have since been found to be flawed, and many physicians discredit the researchers' conclusions. However, if you have concerns, talk to your physician about them.

CONTINUED BELOW

Title: Re: New Drug (at least for clusters)
Post by SommelierCH on Nov 2^nd, 2003, 7:00am

(Excerpt from: http://www.deca-sustanon.com/clomid.htm )
How it works
While it has been claimed that Clomid "stimulates" production of LH and therefore of testosterone, in fact Clomid’s activity is achieved not by stimulation of the hypothalamus and pituitary, but by blocking their inhibition by estrogen.
Clomid is a mixed estrogen agonist/antagonist (activator/blocker) which, when bound to the estrogen receptor, puts it in a somewhat different conformation (shape) than does estradiol. The estrogen receptor requires binding of an estrogen or drug at its binding site and also the binding of any of several cofactors at different sites. Without the binding of the cofactor, the estrogen receptor is inactive. Different tissues use different cofactors. Some of these cofactors are able to bind to the estrogen receptor/Clomid complex, but others are blocked due to the change in shape. The result is that in some tissues Clomid acts as an antagonist - the cofactor used in that tissue cannot bind and so the receptor remains inactive - and in others Clomid acts as an agonist (activator), because the cofactors used in that tissue are able to bind.

Clomid is an effective antagonist in the hypothalamus and in breast tissue. It is an effective agonist in bone tissue, and for improving blood cholesterol.
Clomid also has the property of reducing the adverse effect of exercise-induced damage of muscle tissue. This is very significant for endurance athletes but is not very significant, if at all significant, with reasonable weight training. Clomid does not perceptibly affect gains of the weight trainer either favorably or adversely in my experience.
The claim that duration of intake should not exceed 10-14 days is incorrect. Clinical studies with male patients have been for periods of a year or longer. This error probably originates from the fact that, for use in women, due to the menstrual cycle there would obviously be no point in trying to stimulate ovulation all four weeks of the month. Thus, use in women is limited to 10-14 days. That limitation is not because of toxicity.

(Excerpt from: http://www.rscbayarea.com/articles/clomiphe.html )
Clomiphene citrate appears to act on the hypothalamus and is useful for women who do not ovulate because of hypothalamic or pituitary problems. Given early in the menstrual cycle (day three to seven), it suppresses the amount of naturally circulating estrogen. This "tricks" the pituitary into producing more follicular stimulating hormone (FSH) and luteinizing hormone (LH). These hormones then stimulate the ovary to ripen a follicle and release an egg. Of patients who are properly screened for use of this drug, about 70 percent will ovulate, and 40 percent of those will become pregnant. If a patient ovulates but does not become pregnant, the physician should check cervical factors. The anti-estrogenic effect of clomiphene citrate can create a "hostile" environment for conception.

(Excerpt from: http://infertility.about.com/gi/dynamic/offsite.htm?site=http%3A%2F%2Fwww.babycenter.com%2Frefcap%2Fpreconception%2Ffertilityproblems%2F4090.html )

Just as women need the right balance of hormones to ovulate regularly, men need certain hormones to produce healthy sperm. Surprisingly, the same substances control these reproductive functions in both men and women — so the same fertility drugs that stimulate ovulation stimulate sperm production.
The catch is that the drugs don't perform nearly as well for men (success rates are about a third of those for women), and the FDA hasn't yet approved them for use in men, though a specialist can prescribe them. Very few studies have been done on the effects of fertility drugs on men, and those few agree on just one thing: The drugs can help only men with specific hormonal imbalances.

The drugs and how they work
The two most popular fertility drugs for women, clomiphene and human menopausal gonadotropin (hMG) used with human chorionic gonadotropin (hCG), are also used to treat men with primary hypogonadotropic hypogonadism — a hormone deficiency in the pituitary gland or hypothalamus that prevents the testicles from receiving the signal to make sperm.
Clomiphene (taken daily as a pill) prompts the pituitary gland to make luteinizing hormone and follicle-stimulating hormone, which tell the testicles to produce testosterone and possibly more sperm. HCG (injected two to three times a week, sometimes with hMG) prompts the testes to produce testosterone and sperm directly.

Is it for you?
Your doctor may prescribe fertility drugs if you have a hormonal imbalance (originating in the pituitary gland or hypothalamus) linked to a low sperm count; sometimes a doctor will also prescribe them for poor sperm quality and motility (its ability to move). (To learn about other factors that can cause fertility problems in men, see our article.)

Title: Re: New Drug (at least for clusters)
Post by Ree on Nov 2^nd, 2003, 7:30am

this is great news and Donna I think your theory is right too... keep us up to date on this treatment... we would definately be interested......... ree

Title: Re: New Drug (at least for clusters)
Post by catlind on Nov 2^nd, 2003, 10:04am

I have copied your original post Mark and I have forwarded the info on to Dr. Bigal, one of the researchers for the New Headache Center for Headaches and research Institute.

I am hoping that if we can involve as many scientist type docs in this we may find the common denominator and we can get further information and research on why this drug has worked.

Good luck and keep us posted, and I will keep everyone posted if I hear back from the Doc.

Cat

Title: Re: New Drug (at least for clusters)
Post by Cooked Brain on Nov 2^nd, 2003, 10:18am

Good news Mark!

[smiley=thumb.gif]

Title: Re: New Drug (at least for clusters)
Post by firebrix on Nov 2^nd, 2003, 6:45pm

Great news Mark!
And thank you for all that interesting reading SommelierCH.
firebrix

Title: Re: New Drug (at least for clusters)
Post by MarkHW on Nov 3^rd, 2003, 9:12pm

Thanks for the info.

I sent my update in to Dr. Gladstone at Mayo Arizona today. We'll see what he has to say since I hit the 4 week mark with no cluster.

Mark