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Topic: New Drug (at least for clusters) (Read 785 times) |
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MarkHW
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New Drug (at least for clusters)
« on: Oct 21st, 2003, 10:28am » |
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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
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The clusterhead formerly known as williamsmh.
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Woobie
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Re: New Drug (at least for clusters)
« Reply #1 on: Oct 21st, 2003, 9:58pm » |
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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! 
LOL! Let us know if it continues to work!!
tina 
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athos
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Re: New Drug (at least for clusters)
« Reply #2 on: Oct 22nd, 2003, 3:15am » |
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A desired side effect?
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Melissa
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Re: New Drug (at least for clusters)
« Reply #3 on: Oct 22nd, 2003, 7:03am » |
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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
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| « Last Edit: Oct 22nd, 2003, 7:04am by Melissa » |
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brain_cramps
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Re: New Drug (at least for clusters)
« Reply #4 on: Oct 22nd, 2003, 7:10am » |
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on Oct 21st, 2003, 9:58pm, Woobie wrote:| ...but - watch out- you could have quadruplets if you're not careful! ... |
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GREAT use of the new smilies... Best I've seen so far. 
grant 
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Donna
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Re: New Drug (at least for clusters)
« Reply #5 on: Oct 22nd, 2003, 7:40am » |
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See? My testosterone theory may not be so silly after all.
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River_Rat
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Re: New Drug (at least for clusters)
« Reply #6 on: Oct 22nd, 2003, 10:24am » |
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SOUNDS LIKE GREAT NEWS!! Maybe this is it.
What kind of side effects did you have Mel?
LEE
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Melissa
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Re: New Drug (at least for clusters)
« Reply #7 on: Oct 22nd, 2003, 10:39am » |
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Quote:| What kind of side effects did you have Mel? |
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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. 
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MarkHW
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Re: New Drug (at least for clusters)
« Reply #8 on: Oct 22nd, 2003, 2:30pm » |
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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
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The clusterhead formerly known as williamsmh.
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MarkHW
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Re: New Drug (at least for clusters)
« Reply #9 on: Oct 22nd, 2003, 2:31pm » |
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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
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totka
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Re: New Drug (at least for clusters)
« Reply #10 on: Oct 22nd, 2003, 2:50pm » |
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This is a hypothalamus stimulating drug - it may be effective at CH ... but take care of pregnancy 
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Melissa
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Re: New Drug (at least for clusters)
« Reply #11 on: Oct 22nd, 2003, 3:04pm » |
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I had no idea men took it too! 
Wow, learn somethin new each day around here. Anyhow, I am still happy for ya Mark!
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MarkHW
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Re: New Drug (at least for clusters)
« Reply #12 on: Oct 22nd, 2003, 3:44pm » |
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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
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The clusterhead formerly known as williamsmh.
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Woobie
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Re: New Drug (at least for clusters)
« Reply #13 on: Oct 22nd, 2003, 4:03pm » |
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WOW!!
This is good..
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Unsolved
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Re: New Drug (at least for clusters)
« Reply #14 on: Oct 23rd, 2003, 8:28pm » |
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I also start taking this drug this weekend. Hope it works for me like it has for you. Also scheduled for a 2nd 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.
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MarkHW
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Re: New Drug (at least for clusters)
« Reply #15 on: Oct 27th, 2003, 4:16pm » |
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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
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The clusterhead formerly known as williamsmh.
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BarbaraD
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Re: New Drug (at least for clusters)
« Reply #16 on: Oct 27th, 2003, 4:39pm » |
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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
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Unsolved
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Re: New Drug (at least for clusters)
« Reply #17 on: Oct 28th, 2003, 9:07pm » |
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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.
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Unsolved
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Re: New Drug (at least for clusters)
« Reply #19 on: Oct 29th, 2003, 2:42am » |
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I'll take my first pill on 10/29 @ around 8:30 am.
??? 
Don't know much yet ...i'll post about it in a few days
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Hirvimaki
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Re: New Drug (at least for clusters)
« Reply #20 on: Oct 29th, 2003, 9:21am » |
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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
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NotH20
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Re: New Drug (at least for clusters)
« Reply #21 on: Oct 29th, 2003, 10:03am » |
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I'm truly amazed at these posts!! 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
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MarkHW
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Re: New Drug (at least for clusters)
« Reply #22 on: Nov 1st, 2003, 9:08am » |
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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!!!
Mark
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The clusterhead formerly known as williamsmh.
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Cerberus
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Re: New Drug (at least for clusters)
« Reply #23 on: Nov 1st, 2003, 9:15am » |
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WOO HOO!!!!!!!!!!!!!!!!
That's awesome!!!
 Tina
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| « Last Edit: Nov 1st, 2003, 9:15am by Cerberus » |
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MarkHW
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Re: New Drug (at least for clusters)
« Reply #24 on: Nov 1st, 2003, 9:07pm » |
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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
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The clusterhead formerly known as williamsmh.
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