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Topic: anyone know about the dhe i.v.? (Read 1524 times) |
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ccbiggsoo7
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anyone know about the dhe i.v.?
« on: Jan 10th, 2008, 2:12pm » |
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been getting my ass kicked for about three months now with no breaks at all, maybe a day here and there. 4 or 5 kip8-10's a day, minimum 2 a day! Been chronic for about 11 years now and always have a lot harder time from nov thru feb. but this is just to much for this ol boy to take anymore. Gonna try a pred taper one last time today ,usually works but last time it didn't break it. So in about 4 or 5 days gonna do the dhe intravenus 3 day hospital stay i guess. Ain't looking forward to that shit at all, but not much options left. Anybody know about the success rate of this, i would appreciate any info? Thanks Chris
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thomas
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Re: anyone know about the dhe i.v.?
« Reply #1 on: Jan 10th, 2008, 2:59pm » |
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Haven't done an inpatient, but out-patient and at home dhe injections in the bum. Usually get a pretty good break from it.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Ray
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Re: anyone know about the dhe i.v.?
« Reply #2 on: Jan 10th, 2008, 5:16pm » |
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Dear Chris:
This past summer, I had the DHE IV therapy. It worked well for me. I have had a few hits, here and there, and O2 has been very effective to stop them. The drugs need to be diluted with saline and pushed very slowly. One other thing, do not use IV phenergan for nausea as it was very hard on my veins and burned like the dickens!
Do you have any specific questions?
Ray
PS. Dennis wrote an article for the OUCH newsletter recently, could someone post the link to the article on IV DHE?
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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thomas
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Re: anyone know about the dhe i.v.?
« Reply #3 on: Jan 10th, 2008, 5:29pm » |
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on Jan 10th, 2008, 5:16pm, Ray wrote:was very hard on my veins and burned like the dickens!
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Ray, I'm not doc, but I think that was probably the DHE that burned. Whoever was pushing the meds needs to slow down even more.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Ray
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Re: anyone know about the dhe i.v.?
« Reply #5 on: Jan 11th, 2008, 12:39pm » |
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Thank you Dennis!
Thomas:
The phenergan was given separately and before the DHE, so I'm confident that the phenergan was what hurt so much. After the first infusion, the nurse diluted the phenergan with sterile saline and it hurt less.
Anyway, the results were good for me, resulting in less CH and those that did occur over the next couple of months were more easily aborted with oxygen. Please note that the results are temporary, but it gave me a much needed break!
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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thomas
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Re: anyone know about the dhe i.v.?
« Reply #6 on: Jan 11th, 2008, 1:18pm » |
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on Jan 11th, 2008, 12:39pm, Ray wrote:Please note that the results are temporary, but it gave me a much needed break!
Ray |
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That is usually the case, but that break can be priceless. The first time I ever had it, it actually broke my cycle, haven't had that luck since. But I can certainly give you a good bit of time to "recharge" for the next battle.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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ccbiggsoo7
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Re: anyone know about the dhe i.v.?
« Reply #7 on: Jan 11th, 2008, 10:46pm » |
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Thomas Ray and Dennis Thank you for that info! Just one more thing on that, it says you can do this at an outpatient place 2 or 3 times a day. I asked my doc and he told me you had to be admitted. Maybe he was just mistaken. Did any of you do it as an outpatient or did you stay for the three days. Because i don't mind going , but i didn't want to stay all night. He told me if this didn't work that they would do the predisone i. v. Seems to me that would be better because it looks like this isn't that great for Chronic ch's anyway! Chris
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Brew
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Re: anyone know about the dhe i.v.?
« Reply #8 on: Jan 11th, 2008, 11:25pm » |
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on Jan 11th, 2008, 10:46pm, ccbiggsoo7 wrote:| Thomas Ray and Dennis Thank you for that info! Just one more thing on that, it says you can do this at an outpatient place 2 or 3 times a day. I asked my doc and he told me you had to be admitted. Maybe he was just mistaken. Did any of you do it as an outpatient or did you stay for the three days. Because i don't mind going , but i didn't want to stay all night. He told me if this didn't work that they would do the predisone i. v. Seems to me that would be better because it looks like this isn't that great for Chronic ch's anyway! Chris |
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I've done it inpatient for three days - twice. After getting my ass kicked for a week after I checked out, I got nice, long breaks afterward. About 4 months of a break each time.
If your doc is saying you have to be admitted, it may be either his personal policy or the hospital's policy. I've heard that you can do it outpatient, but I don't know anyone who ever has.
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Ray
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Re: anyone know about the dhe i.v.?
« Reply #9 on: Jan 12th, 2008, 7:18am » |
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Dear Chris:
I did this therapy as an outpatient. Please look about 5 pages back in this forum for a topic of "DHE therapy". I sort of blogged here about my progress with the therapy. This was in early October. Please let me know if you can't find it.
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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artonio7
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Re: anyone know about the dhe i.v.?
« Reply #10 on: Jan 12th, 2008, 7:29am » |
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on Jan 12th, 2008, 7:18am, Ray wrote:Dear Chris:
I did this therapy as an outpatient. Please look about 5 pages back in this forum for a topic of "DHE therapy". I sort of blogged here about my progress with the therapy. This was in early October. Please let me know if you can't find it.
Ray |
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Here it is
http://tinyurl.com/3b2aub
with warm regards,
Tony
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Brew
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Re: anyone know about the dhe i.v.?
« Reply #11 on: Jan 12th, 2008, 8:54am » |
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on Jan 12th, 2008, 7:18am, Ray wrote:| I did this therapy as an outpatient. |
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See? There you go. I did not know that you did it outpatient (or I didn't remember).
Do you think that Chris' doc told him "inpatient only" because it might be either his or the hospital's policy, or is it perhaps that the doc is just a little ignorant of the options?
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cash5542
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Re: anyone know about the dhe i.v.?
« Reply #12 on: Jan 12th, 2008, 1:28pm » |
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My daughter Lisa has used dhe 3 different ways. The first time was inpatient. I think she was admitted two seperate times and received it inpatient. The third time she went to the doctors office and repeated a series there. His reasoning was that after beig inpatient he was confident enough to let her leave and knew how she would respond to the medicine. I seem to remember this option wasn't a very clear thing for her either. This summer she was given dhe to give herself at home. She said that's not near as effective as the iv. I hope this may clarify a bit. I think some places will do it and others won't.
Charlotte
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DennisM1045
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Re: anyone know about the dhe i.v.?
« Reply #13 on: Jan 12th, 2008, 2:08pm » |
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I believe Ray had to dig up a protocol for his Dr as the Dr/Hospital didn't have an outpatient protocol of their own at the time (Ray, chime in here if I have this wrong)
-Dennis-
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Ray
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Re: anyone know about the dhe i.v.?
« Reply #14 on: Jan 14th, 2008, 2:04pm » |
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Hello:
I have been offline for a couple of days, sorry if this took a while....
I saw neurologists at the Ohio State University Hospital (OSU) clinic. I had a Sr. Resident and his "boss" check me out. When I was getting hammered with CH for weeks on end, I called my neuro and asked if we could do DHE therapy OUTPATIENT.
The clinic has an infusion suite and RN and all that was left was the exact protocol. They contacted their colleagues at Jefferson in Philadelphia and came up with one.
I went to OSU 2x a day, 7:30 AM, and 4:30 PM for about an hour each time. I received 25mg of Phenergan (anti emetic) and 1mg of DHE via IV push at each session. For the third dose of the day, I used Migranal Nasal Spray at home. I did this for each of three days in a row.
I did not want to be inpatient for a number of reasons, and I seemed to tolerate this therapy well, however the Phenergan did make me tired and I napped when I got home. It might be better if someone were to go with you and drive you to and from the appointments.
I hope that this information is helpful,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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Lizzie2
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Re: anyone know about the dhe i.v.?
« Reply #15 on: Jan 14th, 2008, 2:46pm » |
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I don't have time to write much of a reply now, but I have done DHE as injections at home, at an outpatient IV infusion center over 3 days (leaving each night), and as an inpatient. I would definitely be happy to share experiences with you!
As for what someone said above regarding phenergan, yes it does burn - but it's easier if diluted in saline. Many infusion centers/hospitals give reglan (metoclopromide) prior to DHE rather than phenergan, and reglan is generally well tolerated for most people.
At any rate, I'd love to write more when I get home from an appointment I'm leaving for!
Take care,
Carrie 
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jace77
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Re: anyone know about the dhe i.v.?
« Reply #16 on: Jan 15th, 2008, 10:40am » |
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what neuro do you see at OSU? We are in the columbus area and feel we have exhausted things here and are heading back to Cincy, seen neuro there twice, first time got the cycle to stop after 5+ years for almost a year and a half, second time for about 13 months.
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Ray
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Re: anyone know about the dhe i.v.?
« Reply #17 on: Jan 15th, 2008, 11:42pm » |
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I saw a Dr. Novak at the OSU Neurology clinic.
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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jace77
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Re: anyone know about the dhe i.v.?
« Reply #18 on: Jan 16th, 2008, 12:15am » |
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THank you Ray, will look into that tomorrow, Dr Odonnell imo is worthless and Dr Hussein is out of ideas, which is why we go to Cincy
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Ray
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Re: anyone know about the dhe i.v.?
« Reply #19 on: Jan 17th, 2008, 12:03am » |
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on Jan 16th, 2008, 12:15am, jace77 wrote:| THank you Ray, will look into that tomorrow, Dr Odonnell imo is worthless and Dr Hussein is out of ideas, which is why we go to Cincy |
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If you would like to talk it over with me, please send me a private message (PM) and I'll gladly share my phone number with you. If you contact Dr. Novak, at the OSU neurology clinic, feel free to mention me and tell him that you're considering a similar outpatient DHE protocol. He's young, energetic, and willing to try something new; at least with me.
With best wishes,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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jace77
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Re: anyone know about the dhe i.v.?
« Reply #20 on: Jan 17th, 2008, 8:12pm » |
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Our Neuro just ordered yesterday DHE for the first time and he is doing it at home - a 24 hour day infusion through a pump sub-cutan for 2-4 days depending on how it is tolerated. Hubby needs to get baseline labs done first and EKG then we will start it next week. He said it is not as hard on the stomach this way and seems to be just as effective, will take reglan 30 minutes prior to the start of infusion. This is a new treatment to us, so not sure what to expect
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Garys_Girl
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Re: anyone know about the dhe i.v.?
« Reply #21 on: Jan 19th, 2008, 2:01pm » |
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The DHE i.v. as administered on an inpatient basis is usually accompanied with regalan to help prevent the nausea. Some people here have met with great success, and it often gives chronics a much-needed break.
For hubby, it somehow reset something in his system that has caused chronic vomiting that hasn't stopped for 7 months now. No anti-emetics have worked, and it didn't stop his clusters at all.
Laurie
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