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Cluster Headache Help and Support >> Cluster Headache Specific >> Please work DHE, pleeease work. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1237339937 Message started by Pixie-elf on Mar 17th, 2009 at 9:32pm |
Title: Please work DHE, pleeease work. Post by Pixie-elf on Mar 17th, 2009 at 9:32pm
So, I was given the injections after my headache specialist viewed my MRI's and all.
I was also informed that if this did not work, I get to enjoy a lumbar puncture. (Same thing as a spinal tap, they just have a gauge to measure how much spinal fluid you have, and drain some off if needed.) DO NOT WANT lumbar puncture. I've had over 250 of these fuckers. (1-2 a week for 4 years straight, then more spaced out later on.) My back has enough scar tissue already, and quite honestly, my nerve roots dislike having needles jabbed into them. I have the sub-q injections, I took my first one at 8pm, almost 30 minutes ago. So now I am praying that it works. I take 0.25mg every 6 hours since I have such severe allergies. I'm hoping my oxygen tanks won't be put to use tonight, or any of the next 7 nights... And praying it breaks my cycle! PFDAN Mystina |
Title: Re: Please work DHE, pleeease work. Post by Sean C on Mar 17th, 2009 at 9:35pm
I'll pray with you Pix ;)
Fingers crossed too. Sean................................. |
Title: Re: Please work DHE, pleeease work. Post by George on Mar 17th, 2009 at 10:01pm
I really hope this works for you, Pix. Quite a few people here have had good results with it. Let us know how it goes, eh?
Best wishes, George |
Title: Re: Please work DHE, pleeease work. Post by Skyhawk5 on Mar 17th, 2009 at 10:01pm
Mystina,
I just started using DHE self injections in Oct. 08. Unfortunately the sub-q's didn't work for me so I had to go with the IM's (intramuscular) and that works great. It's not as bad as it sounds. I have read that the sub-q shots don't work for other CH sufferers. If you relax when you do the IM shot there is little if any pain. I hope the sub'q shots work for you but wanted to let you know my story. Let me know if you need advice. Your Dr. may say there shouldn't be a difference, but for me there is. Good Luck, Don |
Title: Re: Please work DHE, pleeease work. Post by Ray on Mar 18th, 2009 at 12:17am
I wish you success with DHE.
|
Title: Re: Please work DHE, pleeease work. Post by midwestbeth on Mar 18th, 2009 at 9:13am
Fingers crossed that the DHE work for you Mystina. Let us know how your night went.
Beth |
Title: Re: Please work DHE, pleeease work. Post by Jeannie on Mar 18th, 2009 at 9:44am
I hope it works for you, Mystina. Good luck!
Jeannie |
Title: Re: Please work DHE, pleeease work. Post by Guiseppi on Mar 18th, 2009 at 9:51am
Damnit child you are so due a break. Crossing fingers this is the break through for you. [smiley=hug.gif]
Joe |
Title: Re: Please work DHE, pleeease work. Post by Pixie-elf on Mar 18th, 2009 at 11:44pm
Thank you all. <3
So far the hits are not as severe as they had been, and I've finally gotten some good, quality sleep. I think it's the first time I've slept well in I don't know how long. It seems like an hour or so before it's time for the next injection the beast decides to act up. I'm just so thankful I haven't had ANY hives due to it. With injections it's usually instant. If nothing else the site will swell up...nothing! I feel like dancing. |
Title: Re: Please work DHE, pleeease work. Post by Guiseppi on Mar 18th, 2009 at 11:59pm
[smiley=shore.gif]
Then Dance!!!!!!!!! Joe |
Title: Re: Please work DHE, pleeease work. Post by Ray on Mar 19th, 2009 at 8:41am
We'll do the happy dance with you!
Ray |
Title: Re: Please work DHE, pleeease work. Post by Katie on Mar 19th, 2009 at 8:57am
From your other posts I know your treatment options are limited so I am really really hoping this does work for you.
I am so pleased you have not had any hives and so far so good. :) |
Title: Re: Please work DHE, pleeease work. Post by Pixie-elf on Mar 31st, 2009 at 10:56pm
So, here's an update for me...
I did experience relief from the DHE, it didn't break my cycle HOWEVER, I believe that was due to the low dose. I'm going to speak to my headache specialist about having more prescribed so I can use it to break my cycle... The real test for me? Was after taking a dose and sleeping for 10 minutes, I was woken up, found out little Jose was puking his guts up. I didn't have to worry about having to hop on the oxygen, or go get an ice pack, etc... For a few hours. I was able to lay down and hold him until he felt better. No shadows, nothing else. So I truly find this medication to be a miracle, I finally got the break I needed. I've also decided I'm going to let them do an LP if they feel like it'll rule out any other possibilities... At least I know I could take some DHE, and won't have to worry about having a hit during a tap. It takes them around 45 minutes to an hour or more to drain my spinal fluid. So the DHE will at least prevent me from being in a worse hell than I'll already be in. :D Thank you all for your well wishes. PFDAN Mystina |
Title: Re: Please work DHE, pleeease work. Post by Skyhawk5 on Apr 1st, 2009 at 3:21am
Glad to hear you're getting some relief. I forgot to mention in my earlier post, with the IM shot and 1ml. of DHE 45 I get a full 24 hours PF.
In my 20+ years of CH this is the first medicine that really works when my Oxygen fails. Imitrex doesn't work for me, none of the triptans do. Keep up the good fight, Don |
Title: Re: Please work DHE, pleeease work. Post by lonedog on Apr 22nd, 2009 at 12:05pm
HI:
I have had infusions of DHE in the hospital to break my CH cycles and it works well. I have never heard of self injection. Could you briefly explain how it works etc. My doctor is good about anything I want to try but even he hadn't heard of it. Any info would be a help and appreciated. Thanks.....Vern |
Title: Re: Please work DHE, pleeease work. Post by Skyhawk5 on Apr 22nd, 2009 at 6:14pm
First we must realize DHE-45 will only abort cycles for a select few. I spent 6 days inpatient for the DHE-IV treatment (3 extra days) and I got hit the night I got home.
Since my inpatient stay I've been to the E.R. a couple times and got a DHE injection and this got me some sleep after several days of little. Imitrex doesn't work for me and I just last year got DHE-45 home injections. The sub-q's didn't work but the IM (intramuscular) did. Giving me a full 24 hours pain free. A dangerous drug, but when the O2 fails and I have nothing better in my 21 years of trials, it will stop a runaway CH hit in 5 minutes. Best of Luck, Don |
Title: Re: Please work DHE, pleeease work. Post by Pixie-elf on Apr 23rd, 2009 at 12:05am
I have a little update.
My doctor allowed me to increase the DHE to the full dosage of 1ml, every 6-8 hours. I did it like that for 3 days straight. It didn't break my cycle, but it seems like my hits are milder now. At this point, anytime that I have to take an injection, I have between 6-12 hours pain free time, which is a blessing. When I need a break, it sure as hell gives me one! Sub-q worked somewhat okay, but after I had to start taking b12 injections, I tried the needles from that. They were 3/8's. I wound up going to a 1 inch needle, and that gives me the best results. I did have a weird reaction though, I'm now on the b12 shots once per month, but when I was on them daily, I could not take the DHE within 6 hours or so after the b12 shot. It gave me SEVERE hits that the 02 wouldn't even help. It also spikes my blood pressure to the same level it is during a K9-10. It's gone from 80/60 before/without the DHE to 140/90 with it. PFDAN Mystina |
Title: Re: Please work DHE, pleeease work. Post by Skyhawk5 on Apr 23rd, 2009 at 1:06am
Mystina,
I'm happy you're finding some relief. I use the 1 inch needles too. I haven't had any BP spikes with DHE, but I do get BP spikes during and after a major hit even without DHE. DHE is a potent vaso-constricter and like Imitrex, can be hard on the heart. I have a healthy heart, but my Doc was very worried that I would have a heart attack from DHE. I tolerate it quite well so when the O2 doesn't stop the hit I know DHE will. I've also used it to get a good nights sleep when the beast is at my door all night for days on end. Hoping it does break your cycle, Don |
Title: Re: Please work DHE, pleeease work. Post by Ray on Apr 23rd, 2009 at 10:35pm
Dear Mystina:
I, too, had gone thru the 3 day course of IV infusions of 1 mg DHE. The first time I had a couple months virtually PF. This year, I did the same thing as an inpatient and got about 9 days. I have some shots that I have for home use, but the vasoconstriction from DHE is much LESS specific than the triptans and therefore will spike your BP and you should monitor it frequently. I'm still hoping you find relief, Ray |
Title: Re: Please work DHE, pleeease work. Post by BarbaraD on Apr 24th, 2009 at 6:59am
Back in the OLD days when I was episodic, I could go in the hospital and get the IV DHE injections around the end of my cycle and break it (about 3 days of IV injections). Then after I went chronic, I could get a break with the IV injections for about a week or so.
The IM's work pretty good (taken every 8 hours - I get relief as long as I take them every 8 hours and usually a few days afterwards, but.... they just don't work like they used to). I've never taken the sub-q. My neuro said they're working on a nasal spray for DHE and it should be on the market in the next year or so and is supposed to work as well as the IV's. The one thing I've found with DHE is that it makes me terribly nauseaus and I have to take it with phenergan or I have another problem. Hope it works for you -- you could use a break. Hugs BD :-* |
Title: Re: Please work DHE, pleeease work. Post by Ray on Apr 24th, 2009 at 7:47am
Migranol is DHE Maleate nasal spray, less nausea, but major nasal stuffiness....
Ray |
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