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New Message Board Archives >> Medications, Treatments, Therapies 2003 >> New Treatment from Mayo Clinic
(Message started by: MarkHW on Oct 19th, 2003, 7:49am)

Title: New Treatment from Mayo Clinic
Post by MarkHW on Oct 19th, 2003, 7:49am
I haven't posted in a while (been a crazy time with my kids), but....

I was at Mayo clinic in Arizona a few months ago to look at the occipital nerve stimulator.  Before I go ahead with it they have been trying some drug therapies.

Well, nothing was working with traditional meds or combos of tradiitional meds and I was pretty resigned to the fact I was going to need the stimulator.

But, two weeks ago I started Clomid (it is actually usually used as a fertility drug for both men & women).

I haven't had a cluster since I started it!

They found the drug by accident... a patient that was highly resistant to other drugs was put on clomid by a fertility doctor. Suddenly his clusters stopped!  When they took him off of it the headaches returned.

Dr. Gladstone & Dodick are planning to write a paper about this treatment if it continues to work!

The only problem I've had with the drug (no side effects I can see) is my insurance.  Since it's a fertility drug... they didn't want to pay for it.  But... Dr. Gladstone called them himself and they are now covering a 6 month trial period.

Mark

Title: Re: New Treatment from Mayo Clinic
Post by Bob P on Oct 19th, 2003, 7:59am
Interesting that it acts on the hypothalamus:
~~~~~~~~~~~~~
Clomiphene citrate is capable of interacting with estrogen-receptor-containing tissues, including the hypothalamus, pituitary, ovary, endometrium. vagina, and cervix it may compete with estrogen for estrogen-receptor-binding sites and may delay replenishment of intracellular estrogen receptors. Clomiphene crtrate initiates a series of endocrine events culminating in a preovulatory gonadotropin surge and subsequent follicular rupture.
~~~~~~~~~~~~~~
Be careful the little lady doesn't knock you up though!

Title: Re: New Treatment from Mayo Clinic
Post by MarkHW on Oct 21st, 2003, 10:20am
Well, so far, so good... 2 1/2 weeks with absolutely no cluster!

I've had two migraines, but they are just annoying compared to the clusters.

I have seen no side effects so far.

I asked Dr. Gladstone if they would do the vasectomy at the same time I started the meds.... He just smiled.

Mark

Title: Re: New Treatment from Mayo Clinic
Post by jminmilwaukee on Oct 21st, 2003, 10:32am
Very interesting indeed. Please keep us posted on the progress. This could be a wonder drug for episodics such as myself assuming it could be taken for a two or three month period WITHOUT side effects.

Only problem I see is all the headaches that willl be caused by every clusterhead continually reproducing!!!

Yes, I'll have a vasectomy with that prescription thank you very much.

jmin

Title: Re: New Treatment from Mayo Clinic
Post by Woobie on Oct 22nd, 2003, 6:11am
this is very interesting.......

bump..

Title: Re: New Treatment from Mayo Clinic
Post by ave on Oct 22nd, 2003, 1:55pm
This verrry interesting, in as much that I cannot at this stage determine why a fertility doctor should give clomid to a male...

But I admit I have some reading up to do yet.

Title: Re: New Treatment from Mayo Clinic
Post by MarkHW on Oct 22nd, 2003, 3:59pm
So far so good... It's been 2 1/2 weeks with no problems.

Actually the reading I've done does say that Clomid can be given to men and women.  It increases sperm production in men.  It is more common for women to be put on it though.

Mark

Title: Re: New Treatment from Mayo Clinic
Post by Unsolved on Oct 23rd, 2003, 3:19pm
I start this drug this weekend. Hope it works.

Title: Re: New Treatment from Mayo Clinic
Post by Zonie on Oct 24th, 2003, 9:33pm
US, are you going to get the vasectomy with it, too?  I take it that your procedure isn't working as well as you hoped.  Did you get fitted for your C-Pap yet?

Title: Re: New Treatment from Mayo Clinic
Post by Unsolved on Oct 24th, 2003, 10:51pm
You are right. Last RF didn't work much. The 2 docs disagreed about which nerves to target and the anesthesiologist won (did I spell that right). They targeted my Facet nerves. Now they want to go back and target the Occipital nerves.
Yes, I got my machine...I use it when I sleep at night. But to be quite honest, it's very uncomfortable. It hurts my nose and I don't like it much. Don't know how long I can take it. Plus it slows me down getting all that stuff off and out of the way in the middle of the night when I'm staggering to get to my Imitrex injections.  :(
I start Clomid in 5 more days !
PS...I think i'll keep the family jewels  ;;D

Title: Re: New Treatment from Mayo Clinic
Post by MarkHW on Oct 27th, 2003, 4:29pm
Over 3 weeks cluster free....

I really hope it works for you, also!

Mark

Title: Re: New Treatment from Mayo Clinic
Post by Unsolved on Oct 28th, 2003, 8:57pm
Just got my script of Clomid 50 mg tablets.
Brand name is "Clomiphene Citrate".  Dosage is 1 tablet per day for 5 days then report back to docs. This was NOT covered by my insurance so I got the generic (Clomid) brand. 5 tablets @ 26.00. The pharmasist asked "why are you being presrcibed this medication ? ... Its for fetility ". He was stunned when I said clusterheadaches. lol
Wish me luck. Hope I don't start ovulating  :o     :-[

~ Unsolved ~

Title: Re: New Treatment from Mayo Clinic
Post by MarkHW on Nov 1st, 2003, 9:15am
I am now 4 weeks cluster free while on the Clomid!!!!

Unsolved, you won't start ovulating, but you will have increased sperm production.  Clomid works for both men and women.... So be careful out there!!!

The good thing is as a man you will have increased sperm production, but there isn't the high risk of multiple births that a woman has from the increased ovulation.

I also saw somewhere that some weight lifters take Clomid as an alternative to steroids.... HMMMMMM

As I stated in another message...

I will be contacting Mayoc Clinic Monday about my 4 weeks.  Dr. Gladstone said that at 4 weeks he would write it up.  I will ask if there is anything I can post on this site or on the OUCH site.

Mark

Title: Re: New Treatment from Mayo Clinic
Post by doogienj on Nov 1st, 2003, 4:46pm
This sounds promising.  I don't care if I get pregnant with twins, as long as the ch go away ;;D

Title: Re: New Treatment from Mayo Clinic
Post by MarkHW on Nov 1st, 2003, 9:11pm
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!!!


Mark

Title: Re: New Treatment from Mayo Clinic
Post by sixtyminuteman on Nov 2nd, 2003, 5:45pm
Unsolved...any results yet?  Good luck with it! Is the dosage 1 pill/day? Mark, how long before you got relief?

Title: Re: New Treatment from Mayo Clinic
Post by brewcrew on Nov 2nd, 2003, 7:55pm
Glad this drug is working for you. Sounds promising.

I find it hilarious that you mention two doctors named Dodick and Gladstone associated with reproductive issues. The urologist who did my vasectomy years ago was named Dr. Slocum.

Bill

Title: Re: New Treatment from Mayo Clinic
Post by Unsolved on Nov 2nd, 2003, 10:53pm
Just finished my first script of 5 Clomid ... will get more tomorrow...  
SO FAR  ~~  NO CLUSTERS
:D
~ Unsolved ~

Title: Re: New Treatment from Mayo Clinic
Post by MarkHW on Nov 3rd, 2003, 9:18pm
It only took about a day before I noticed a decrease and within 2 my clusters stopped completely.

Unsolved... that is awesome!  The fact that you are cluster free is great for you, but it also means that this drug may work for many!!!

I'm at 4 weeks 2 days....
Mark

Title: Re: New Treatment from Mayo Clinic
Post by sixtyminuteman on Nov 3rd, 2003, 10:48pm
This is very hopeful news. Thanks, guys...and, keep us posted!



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