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Dihydroergotamine (Read 1787 times)
debohio
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Dihydroergotamine
Jan 18th, 2010 at 4:43pm
 
Anybody know anything about this?  I have been dealing with clusters for almost 14 years.  I just got done with my tenth bout of steroids in 18months.  I am on 900mg lithium and verapamil 3 times a day.  also end up doing 15L of oxygen thru non rebreather and 2 shots a day.  I am so ready for them to end.  Going back yet again to my nuero tomorrow and would love any thing to take to her. She is awesome and just wants to help me end this cycle!  I have never been chronic till last 18 months...usually I would cycle from august till march but last 18months has sucked!  let me know...PLEASE!
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Re: Dihydroergotamine
Reply #1 - Jan 18th, 2010 at 4:58pm
 
Welcome.

Try doing a search on this site on DHE or DHE-45. It works for some of us, but it's not a cure. Usually at the very least it's a nice 3-day break. I've had inpatient IV DHE treatments twice. The headaches stopped almost immediately, but once I got out of the hospital they came back with a vengeance 36 hours later. Lasted a week and then I had 9 months of pain-free time. Both times.
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NovellRed
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Re: Dihydroergotamine
Reply #2 - Jan 18th, 2010 at 7:23pm
 
I too have had in-patient IVs of DHE-45. Over the course of 3 days the Dr. would come in a couple of times a day and inject a syringe full into my IV.
The purpose was to break the cycle. It only worked while I was getting injected the first day without the treatment the monster was back.
Another time I kept a needle in for a week and would go by sickbay before and after work for DHE injections. That did not work either.
Wish I had better results for you, but it didn't work for me.
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Skyhawk5
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Re: Dihydroergotamine
Reply #3 - Jan 18th, 2010 at 8:24pm
 
I've had the same results with the inpatient DHE as those avove. There are a select few that it will break the cycle for.

Imitrex doesn't work for me so I now have self IM injections of DHE 45. This works great for me and will give me 24hrs PF.

To help your O2 work better you should look into the O2PTI mask available on CH.com.

Good Luck, Don
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Re: Dihydroergotamine
Reply #4 - Jan 18th, 2010 at 8:32pm
 
DHE-45 also comes in a nasal spray form called Migranal. Worked pretty well from what I remember, but completely plugged my nose for hours and hours.
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debohio
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Re: Dihydroergotamine
Reply #5 - Jan 18th, 2010 at 8:55pm
 
So they never stopped you cluster?  What about the post you said you had 9 months...what does that mean?
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debohio
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Re: Dihydroergotamine
Reply #6 - Jan 18th, 2010 at 8:56pm
 
So they never stopped you cluster?  What about the post you said you had 9 months...what does that mean?
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Re: Dihydroergotamine
Reply #7 - Jan 18th, 2010 at 9:25pm
 
debohio wrote on Jan 18th, 2010 at 8:56pm:
So they never stopped you cluster?  What about the post you said you had 9 months...what does that mean?

Exactly what I said: "...once I got out of the hospital they came back with a vengeance 36 hours later. Lasted a week and then I had 9 months of pain-free time."

Seems as though it broke my cycle after a week or so of particularly nasty time.
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amandaN
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Re: Dihydroergotamine
Reply #8 - Jan 18th, 2010 at 10:17pm
 
I've had clusters for 17yrs, past 9 chronic. 2 yrs ago I  did the 3 day DHE hosp. stay, and within hrs of getting out had a headache. I actually got on this website and looked around (I have tried SO many diff. meds) figured out what I needed to do differently-Verapamil higher dose (had to talk my neurologists into that one) topamax and lithium. I use O2 and migranal if I have to, but rarely. But unfortunately what works for one doesn't work all .  I hope you can get them under control, good luck.
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