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Topic: DHE therapy (Read 2226 times) |
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Ray
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Hello Clusterville:
I would like to hear from those who've received DHE push IV therapy and learn from you first hand how long of a pain free interval you've received from this therapy.
I've been approved for this therapy beginning next week. It's actually slightly modified as I insisted that I do this OUTPATIENT.
I will go in to the Neurology clinic at Ohio State University Hospital (OSU) 2x a day for the IV push DHE for 3 days, and use migranal NS for the 3rd dose.
Thank you,
Ray
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You have my prayers and compassion-I'm right there with you.
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*While we have the time, let us do good*
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Melissa
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Re: DHE therapy
« Reply #1 on: Oct 5th, 2007, 3:52pm » |
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Ray, if you type DHE into the Google search in the upper right hand corner, then click on search clusterheadaches.com, it'll show the posts that have been here on DHE. You should get back 197 results.
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| « Last Edit: Oct 5th, 2007, 3:53pm by Melissa » |
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E-Double
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Re: DHE therapy
« Reply #2 on: Oct 5th, 2007, 8:23pm » |
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Including one that i had today, I have had only 8 major attacks since July 8th when i was released from the hospital following a 3 day stay.
I shadow heavily somedays but overall despite not being completely PF, it is a world of difference.
good luck
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Brew
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Re: DHE therapy
« Reply #3 on: Oct 5th, 2007, 8:54pm » |
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Ray - I have had two rounds of DHE push therapy. Both times I was SLAMMED with K8+ headaches within 36 hours of release (I was inpatient). The headaches went on for about a week or so (not all K8's) and then stopped.
I enjoyed one respite of about 9 months, and the other, well, I'm still enjoying it 14 months later. This last one was helped by 6 mg of methysergide maleate per day for about 5 months, and is currently being supplemented by 900 mg of lithium per day.
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Ray
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Re: DHE therapy
« Reply #4 on: Oct 6th, 2007, 1:50am » |
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Hello Again Clustervillians:
I don't wish to have people repeat themselves unnecessarily, however, I looked through about 40 of the nearly 200 posts via the google search, and not many spoke of the relief or lack thereof. I would appreciate the feedback to continue here.
Although I am not exactly a pioneer in this therapy, I will be the first that this hospital has performed it on. I presented this to the neuro and he had the gumption to run it up through his superiors (he's a head resident neuro) and contact other centers, Jefferson among them, for their protocols. They even have to order the medication for the clinic as they do not have the IV formulation in stock.
They wanted me to come in for 3 days stay, but I feel that would put an undue hardship on my family.
Unless there's some problem obtaining the meds, I am going in Tuesday early AM, then Tuesday PM, and the next 2 days. I will be using Migranal NS for the evening dose.
I could really use the break. Although my total number of hits per 24 hours is down, 3-5 hits during sleep is pretty rough.
I know, wah wah wah.....
I'm looking to my cluster family for some answers, prayer, and support. My experiences will be reported back for all of you.
By the way, they are anticipating my procedure to take less than an hour each time and to let me drive home after each treatment. I do have to raise a little cash so that I can pay for their darned parking fees, but they are going to try to help me offset them in some way, if possible.
I am looking forward to the relief, but I have been very much disappointed in neurologists in the past and have some anxiety about the whole affair.
Thanks for listening (reading),
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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Brew
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Re: DHE therapy
« Reply #5 on: Oct 6th, 2007, 8:58am » |
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My only piece of advice, Ray - make 'em push that tiny amount of drug S-L-O-W-L-Y. Over about a 10-minute period. It burns if you don't.
Good luck.
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DennisM1045
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Re: DHE therapy
« Reply #6 on: Oct 6th, 2007, 9:11am » |
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I don't have any advice Ray. I only offer my vibes and some prayers that everything goes ok and you get a break.
-Dennis-
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E-Double
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Re: DHE therapy
« Reply #7 on: Oct 6th, 2007, 9:22am » |
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on Oct 6th, 2007, 8:58am, Brewcrew wrote:My only piece of advice, Ray - make 'em push that tiny amount of drug S-L-O-W-L-Y. Over about a 10-minute period. It burns if you don't.
Good luck. |
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though i feel the migranol had preventative qualities, it was nothing compared to the actual push.
good luck brother and remember what Bill said.
SLOWLY
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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rolo65
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Ray,
My experience with DHE was mixed. It did give me some PF days, but physically it takes a big toll. The DHE also was never able to break the pain long term. DHE is also very painful to inject.
I finally broke down and asked my neurologist for lithium, and it works with some side effects. I have been 95% PF for 45 days so far. It has been a godsend for a chronic cluster head like me. Only 1 M tank for 30 days!
Good luck with the DHE, and hope it helps more than it hurts!
BW&PFDAN,
Roland.
Edit because it was not 90 days, memory and lack of concentration are some of the lithium SE's.
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| « Last Edit: Oct 6th, 2007, 7:01pm by rolo65 » |
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thanksdad
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Re: DHE therapy
« Reply #9 on: Oct 6th, 2007, 10:24am » |
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Hi Ray,
Sorry, I can't answer. I can only tell you that my dad has had success with this treatment. My doc and nero have refused to give it to me. They told me its too toxic on the body. Unfortunatly, they would rather pust the narcotics. I am treating with topamax, nortriptyline, & plenty of imitrex injections. I have been pf for almost 6 days now.
good luck, my dad swears by it.
sheila
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cash5542
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Re: DHE therapy
« Reply #10 on: Oct 8th, 2007, 7:11am » |
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Ray,
I was talking to Lisa on the way home yesterday and she said the dhe injections at home were ineffective for her and the dhe iv in the hospital was ok but not long term results like she hoped for. I remember her getting it and it was painful and should be slow. Also flushed out afterwards. I'm sure the nurses know this. Most of all I wanted to wish you luck tomorrow. I hope this works. I am still amazed at how each drug has a different reaction with each patient. There definately isn't one answer and it's worth a shot (no pun intended  )
Charlotte
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Ray
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Re: DHE therapy
« Reply #11 on: Oct 8th, 2007, 5:37pm » |
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Hello Clusterville:
Thank you for those responses so far. I just got off the phone with OSU and they want to begin Wednesday instead of Tuesday (tomorrow). Just wanted to keep you all up to date.
With regards,
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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rolo65
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I’m sorry; I just read your original post.
I had a pick line in my arm and hit an ampoule every 8 hours for 6 days before I physically couldn’t take it any more.
One week later I was right back to 3-5 K7-9 bangers a day. That’s just me and all are different! I did use it for breaks when getting 5 hits a day and every other day for awhile.
A few times at the hospital for an IV push before that with no more than a week relief.
If you’re episodic it may kick you out of cycle (did I just say that and I swore to my self I would never type the word episodic on this site!), but in MHO if your chronic like me, it’s just another option to get some relief.
I truly hope it works, and if not at least you gave it a try and know what to expect if you decide to do it at home for a break now and then.
BW, Rolo..
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Ray
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Re: DHE therapy
« Reply #13 on: Oct 10th, 2007, 8:35am » |
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Hello:
Today begins day 1 of the DHE treatment. I leave here in about an hour. Get those prayers and vibrators errr, vibes reved up.
Thanks!
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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E-Double
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Re: DHE therapy
« Reply #14 on: Oct 10th, 2007, 9:04am » |
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REMEMBER>>>>>>SLOW PUSH!!!! and here is a tip
ask for a warm compress for the arm.
It certainly helped me with circulation and the ache that I had if they pushed even a tad bit to fast.
best of luck brother
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Ray
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Re: DHE therapy
« Reply #15 on: Oct 10th, 2007, 11:08am » |
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Hello:
I survived the first one. Not very uncomfortable. I still have the temporary IV port in my arm and back to OSU at 4:30 for the next one.
Regards,
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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Brew
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Re: DHE therapy
« Reply #16 on: Oct 10th, 2007, 11:27am » |
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What surprises me is that they don't seem interested in montoring your heart during the treatment. DHE is one powerful vasoconstrictor. Are you wearing a portable halter monitor that you can upload?
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Brew
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Re: DHE therapy
« Reply #17 on: Oct 10th, 2007, 11:27am » |
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P.S. - How you feeling, Ray?
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Lizzie2
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Re: DHE therapy
« Reply #18 on: Oct 10th, 2007, 11:50am » |
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Are they premedicating with anything? Reglan? Anything? I can only tolerate half the dose or else it makes me puke instantly. Even with the IM injections, it's that way for me. My former neuro would allow it to be reconstituted in a bag of saline and given over 15 minutes, but my current neuro feels it doesn't work as well that way, so let's just say I puke a lot more when it's pushed. I've never felt that it burns, but that's just me!
With the migranal at night, do make sure that you don't sniff it up your nose and swallow it. (Gross, sorry!) It must be absorbed by the lining of the nose to be effective. This is the main reason why migranal fails for most people.
I've received DHE many times IV - both inpatient and in the outpatient infusion center (at Jefferson - I'd go in for 8 hours a day for 3 days each and receive a myriad of IV treatments - but certainly could not drive home after any of them!), and it's gotten me various amounts of success. I've always had better success with it for my CH than for my chronic migraine, and after I went to the infusion center in April, I had about 4 months of reduced hits, which was wonderful!!
Best of luck, and I hope it works for you!!
Let us know how it's going!!
Hugz,
Carrie
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Ray
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Re: DHE therapy
« Reply #19 on: Oct 10th, 2007, 1:48pm » |
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Hello Everyone:
Thank youfor your concern, I am fine. I was a little sleepy from the Phenerergan which was the anti-emetic. The Phenergan and the DHE pushes were both diluted by saline. I have no portable heart monitor, but I was checked vigorously during the slow pushes.
I am taking it easy, and not doing anything more strenuous than typing at the computer or driving back to the hospital (10 mins).
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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http://www.shadesgarden.com
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Ray
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Re: DHE therapy
« Reply #20 on: Oct 10th, 2007, 11:21pm » |
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I survived the 2nd treatment too. Using Migranol now prior to bed. 8 AM appt. tomorrow morning. A bit beat from the treatments and the vein is sore from the pushes. All in all, not too bad.
PF wishes for you all,
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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sandie99
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Re: DHE therapy
« Reply #21 on: Oct 11th, 2007, 4:51am » |
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I only just read this thread. Lots of luck, Ray! I hope it works well!
Hugs & PF wishes,
Sanna
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Miz_D
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Re: DHE therapy
« Reply #22 on: Oct 11th, 2007, 6:41am » |
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Hi Ray,
Just wanted to say good luck to you and hope that the treatment gives you a much needed rest...
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Ray
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Re: DHE therapy
« Reply #23 on: Oct 11th, 2007, 1:34pm » |
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Hello everyone:
Once again, I had a treatment and survived. They have moved the IV port to the other arm, the first site was reddened. I don't think that it ruptured the vein, rather it got irritated. I go back in a couple of hours for another treatment.
They are giving me a lot of attention and taking their time with me.
Thank you all for your kind 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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E-Double
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Re: DHE therapy
« Reply #24 on: Oct 11th, 2007, 1:49pm » |
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warm compress.........wonders
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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