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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> anyone know about the dhe i.v.?
        
(Message started by: ccbiggsoo7 on Jan 10^th, 2008, 2:12pm)

Title: anyone know about the dhe i.v.?
Post by ccbiggsoo7 on Jan 10^th, 2008, 2:12pm

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

Title: Re: anyone know about the dhe i.v.?
Post by thomas on Jan 10^th, 2008, 2:59pm

Haven't done an inpatient, but out-patient and at home dhe injections in the bum. Usually get a pretty good break from it.

Title: Re: anyone know about the dhe i.v.?
Post by Ray on Jan 10^th, 2008, 5:16pm

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?

Title: Re: anyone know about the dhe i.v.?
Post by thomas on Jan 10^th, 2008, 5:29pm

on 01/10/08 at 17:16:10, Ray wrote:

was very hard on my veins and burned like the dickens!

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.

Title: Re: anyone know about the dhe i.v.?
Post by DennisM1045 on Jan 11^th, 2008, 12:00pm

I wrote something up in the November OUCH Newsletter. Give it a read ;;D

http://www.ouch-us.org/newsletters/2007/11-07/11-2007.pdf

-Dennis-

Title: Re: anyone know about the dhe i.v.?
Post by Ray on Jan 11^th, 2008, 12:39pm

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

Title: Re: anyone know about the dhe i.v.?
Post by thomas on Jan 11^th, 2008, 1:18pm

on 01/11/08 at 12:39:16, Ray wrote:

Please note that the results are temporary, but it gave me a much needed break!

Ray

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.

Title: Re: anyone know about the dhe i.v.?
Post by ccbiggsoo7 on Jan 11^th, 2008, 10:46pm

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

Title: Re: anyone know about the dhe i.v.?
Post by brewcrew on Jan 11^th, 2008, 11:25pm

on 01/11/08 at 22:46:22, ccbiggsoo7 wrote:

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.

Title: Re: anyone know about the dhe i.v.?
Post by Ray on Jan 12^th, 2008, 7:18am

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

Title: Re: anyone know about the dhe i.v.?
Post by artonio7 on Jan 12^th, 2008, 7:29am

on 01/12/08 at 07:18:48, Ray wrote:

Here it is
http://tinyurl.com/3b2aub

with warm regards,
Tony

Title: Re: anyone know about the dhe i.v.?
Post by brewcrew on Jan 12^th, 2008, 8:54am

on 01/12/08 at 07:18:48, Ray wrote:

I did this therapy as an outpatient.

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?

Title: Re: anyone know about the dhe i.v.?
Post by cash5542 on Jan 12^th, 2008, 1:28pm

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

Title: Re: anyone know about the dhe i.v.?
Post by DennisM1045 on Jan 12^th, 2008, 2:08pm

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-

Title: Re: anyone know about the dhe i.v.?
Post by Ray on Jan 14^th, 2008, 2:04pm

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

Title: Re: anyone know about the dhe i.v.?
Post by Lizzie2 on Jan 14^th, 2008, 2:46pm

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 :)

Title: Re: anyone know about the dhe i.v.?
Post by jace77 on Jan 15^th, 2008, 10:40am

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.

Title: Re: anyone know about the dhe i.v.?
Post by Ray on Jan 15^th, 2008, 11:42pm

I saw a Dr. Novak at the OSU Neurology clinic.

Ray

Title: Re: anyone know about the dhe i.v.?
Post by jace77 on Jan 16^th, 2008, 12:15am

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

Title: Re: anyone know about the dhe i.v.?
Post by Ray on Jan 17^th, 2008, 12:03am

on 01/16/08 at 00:15:19, 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

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

Title: Re: anyone know about the dhe i.v.?
Post by jace77 on Jan 17^th, 2008, 8:12pm

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

Title: Re: anyone know about the dhe i.v.?
Post by Garys_Girl on Jan 19^th, 2008, 2:01pm

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